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Where do we start? Evidence-Based Medicine and antibiotic prescribing.

Fahima was my third patient of the day. I was running almost on time and relatively unstressed.

She bought in two of her children with her, and opened the consultation by saying that she had made the consultation for herself, but now the girls were ill, so she wanted  me to see them instead. This happens quite a lot. I also have patients cancel or fail to attend appointments if they feel too ill to attend or refuse home visits if they don’t feel well enough to make themselves or their homes presentable.

Like many GP practices, we still have ten minute appointments for each patient even though they might have one or several, straightforward or complex complaints. Now there are two, or possibly three patients who may have three related or otherwise, simple or ill-defined problems to work through. Medicine is a practice that continually involves decisions about what to do in unexpected situations like this.

The practice of medicine is cultural, social and philosophical and far more besides being scientific or ‘evidence based’. My decision to attempt to deal with Fahima and her daughters in a single appointment is in part driven by anxiety, ‘what if I miss something serious?’ In part it is pragmatism, ‘I’m pretty certain they’re here with straightforward, related complaints – in fact, they all appear to have colds, I know them and I can hopefully deal with them effectively in the time I have’. I hope that I can use the opportunity to invest some time exploring Fahima’s concerns, that might then reduce their likelihood of attending with the same problem next time. It’s also moral, ‘I’m the kind of doctor that helps patients when they need me, so I’m not going to send them away to book another appointment with another doctor or go to A&E’. These decisions, conscious, but implicit are also evidence-based. There is evidence that continuity of care and exploring parental anxiety improves the safety and effectiveness of care. But I also happen to be the kind of doctor that feels guilty for making subsequent patients wait when this consultation takes longer than ten minutes, and I wonder how harmful this might be.

I know Fahima and her daughters well. I know that her husband used to beat her and they were separated but now he has come back, and though she denies it, I’m not sure he isn’t beating her still. Social services are involved. I know that she has struggled to look after her children, that they are under-nourished and have both been in hospital with chest infections and their asthma and eczema is under-treated despite input from community paediatric nurse specialists. I know that Fahima has panic attacks and her oldest daughter Aisha, who is only 9, has missed school a lot to look after her mother. They have a constantly changing stream of relatives and relative-strangers in their damp, two bedroom flat, many of whom sit up at night, smoking and playing cards with their dad. I’m wondering how ‘evidence-based medicine’ can help me here.

The modern pioneer of evidence-based-medicine (EBM) David Sackett, described EBM in 1996 as the integration of individual clinical expertise with the best available external evidence and the patient’s values and expectations. 

EBM = clinical expertise + external evidence + patient values/expectations

Sackett was well aware of its limitations,

Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient.

There is a now a critical campaign for a renaissance of ‘real EBM’, headed by Prof. Trish Greenhalgh. According to these critics, the evidence in EBM is misappropriated by vested interests, excessive in volume, of dubious significance, unreliable in the kind of complex patients seen in practice and management-led rather than patient-centred. All of which might be true, and I suspect they are right. After all, doctors are not very good at understanding the statistics on which most evidence is based, and it does seem that evidence is still seen by many health professionals as being authoritarian rather than facilitative. But evidence is only one part of the equation. Much of their criticism focuses on the unreliable external evidence squeezing out clinical expertise and patient values. There may be more fundamental problems.

For one thing, it’s not clear why clinical expertise is on the right side of the equation – as if it is somehow separate from evidence and patient values rather than the ability to integrate them. Why not,

Clinical expertise = external evidence + patient values?

More importantly though, patient expertise and clinician values are excluded despite it being obvious, if under-appreciated that patients are experts and clinician values influence care. Greater attention to clinician values and patient expertise is almost certainly key to understanding variations in care.

A better formulation might be,

Clinical practice is the integration of the best evidence with the combined values and expertise of patients and clinicians.

The degree to which the expertise and values of both parties is drawn upon varies considerably according to changing contexts such as how strongly values are held and how much expertise each party has, or is willing to share. Many patients have strong opinions for or against antibiotics, and some have suffered unusually severe throat infections that take significantly longer than average to resolve and know from experience that antibiotics are effective.

Qualitative research can help to reveal hidden values and expectations. In one study from 1976, GPs were found to be far more likely to prescribe antibiotics if they expected patients to have difficulty getting to the practice, if they had an exam or travel commitments the next day or if a sibling was in hospital with pneumonia. I used to look after an opera singer who expected antibiotics within hours of every sore throat, and was very upset when I attempted to challenge this. I was relieved to read in a study published this year that I wasn’t alone in prescribing antibiotics to avoid an unpleasant confrontation with patients. The same study raised the point that GPs tend to over-estimate how often patients want antibiotics and perhaps we expect conflict too often. Almost certainly if we are stressed this is more likely.

Stress and burnout is a serious problem among GPs and is associated with a reduced ability to tolerate uncertainty, for example the point at which an antibiotic prescription may be appropriate. Many GPs will admit in private that they are more likely to prescribe antibiotics at the end of a busy clinic that is running late than at the beginning of a clinic that is running on time. In part this is because prescribing is quicker when delivered with, all you need to do to get better is to take the pills, rather than explaining why antibiotics are not required and discussing how else the patient (or parent) might mange their symptoms. Obviously conversations about what else can be done should happen whether or not a prescription is issued and discussions about why antibiotics are prescribed are just as important as discussions about why they are unnecessary. A point we are well aware of but might skip over in order to keep to time.

One way that doctors try to avoid conflict is to use the clinical examination to build a rapport with patients and the strength of the rapport influences whether they are able to take control of the decision to prescribe. The clinical examination is often used as a time for reflection or an opportunity to uncover a patients’ hopes and fears. In another study from 2002, GPs who were least likely to prescribe were more likely to be older, to spend longer with patients and be more interested in their relationships with patients. Those who prescribed more often described their role with patients in terms of a ‘professional service’ or a business exchange. Interestingly they were also more likely to describe themselves as being ‘firm believers in evidence based medicine’ than their peers who prescribed least. Low cost prescribing doctors had a more relaxed attitude to evidence, being less likely to attend educational meetings and were less concerned with labelling symptoms with a diagnosis.

Continuity of care enables doctors and patients to get to know and trust each other and also increases the likelihood that antibiotics will be prescribed prudently. Continuity and mutual trust can make a brief consultation successful, but lack of continuity can eliminate the effects of knowledge and professional skills. One reason parents expect antibiotics when they, or their children have a cold or a sore throat is that they lack confidence in their ability to cope. A known and trusted doctor is more likely than a stranger to give them the confidence they need.

All of this takes place in a wider social context. I am only able to make a decision that combines evidence, expertise and values if there is a meeting between myself and Fahima and her children. A system of healthcare that enables people to see a GP without charge, when they need, makes this possible. The culture of my GP partnership values timely access and continuity of care and allows doctors the autonomy to see extra-patients where necessary and the time required to discuss values and share expertise. We provide protected time for supervision to help reduce the risk of burnout and give staff the opportunity to discuss difficult cases.

In a broader social context, national culture has a significant influence over decisions to prescribe antibiotics as well. A Dutch GP working over here thinks we’re terribly laissez-faire but we point out that we prescribe less than half as many antibiotics as the French.

Antibiotic prescribing rates by country

Why we prescribe antibiotics matters because of the growing problem of antibiotic resistance, where bacteria previously sensitive to the effects of antibiotics develop resistance as a result of excessive exposure.

If we think we (or the French) are to blame, then we need to look also at what is happening in developing countries. I have worked in Afghanistan, Nepal and India with doctors and nurses whose careers have taken them all over the world. A very common situation is as follows. A poor person goes to see a doctor or other healthcare professional with a cough. The ‘professional’ assesses their ability to pay for treatment and gives them a scrap of paper with a list including antibiotics, pain-killers, vitamins, antihistamines and possibly more and sends them to their brother’s pharmacy where they buy whatever they can afford. Often they won’t complete the course of antibiotics, so they give (or sell) them to someone else. In many, perhaps most poor countries it is possible to buy antibiotics direct from pharmacies, and during the avian flu panic a few years ago there was a roaring trade in antiviral drugs being sold from online pharmacies in rich and poor countries. The widespread use of antibiotics and antiviral in intensive livestock farming is also alarming. In the case of TB (tuberculosis) the problem of resistance is significant because antibiotic treatment has to continue for several months and is frequently interrupted by conflict, natural disaster and so on. Medications are frequently sold or exchanged for other medications, food, etc. Unsurprisingly totally drug resistant TB is now, officially a thing.

I don’t wish to ignore the  enormous efforts to circumvent these problems with directly observed TB treatment programs and attempts to provide Universal Healthcare Coverage in poor countries, but the damage is being done all the time.

The future for prudent antibiotic prescribing at home isn’t much brighter. A political agenda that is aggressively encouraging patients to consume and professionals to compete and be judged according to superficial measures of patient satisfaction, combined with a loss of continuity of care and the premature retirement of older GPs is worrying to say the least. External evidence – about when antibiotics should be prescribed-  is occupying too much attention in our efforts to make medicine more ‘evidence-based’.

Back in my own surgery I am faced with Fahima. Her experience of healthcare in Turkey was that colds were quite frequently treated with antibiotics and other medicines and it has taken me about two years to build the trust necessary to convince her that she and her children can manage without them. Nevertheless she is very anxious, both children have been sick recently and I had seen one of them with symptoms of a cold about a week before they were admitted to hospital with a chest infection and her confidence in my diagnostic skills has taken a blow. In fact my confidence in myself took a knock after that. She spends most of the allotted appointment time complaining about the overcrowding at home and how much it is contributing to her children’s ill health so we have almost no time to discuss the use of antibiotics. Most of the conversation takes place as I examine them all one by one, on the couch. I’m examining their behaviour as much as I am their lungs. When the examinations comes to an end, I am prepared to talk about antibiotics and self-care, even though I am running late, but Fahima is gathering her bags and getting ready to leave,

“They’re OK? Yes?” she asks, with her hand on the door.

“Yes, they’ll be fine” I say, taken by surprise.

“Thanks doctor, thanks for listening”

 

 

Critical Voices

I’ll be speaking at this on Saturday and asking the question, ‘how do we doctors know what it’s like to be a patient?’

Critical Voices A4 Flyer-1

 

Critical Voices A4 Flyer (1)-2

Diagnosing cancer

“What do you think this is, doc?”

Mike opened his mouth as wide as possible and pointed to his right tonsil.

It was about the size of a conker and grey. I’d never seen anything like it.

“I’ve never seen anything like it” I said. “But I really don’t like the look of it”

“So what could it be?” he asked.

“Mike, I’ve never seen tonsil cancer before, but I really think we should find out what that is as soon as possible.”

“Thanks doc, what do we do now?”

I referred him to the local ENT specialist and 2 weeks later he was diagnosed with cancer of his tonsil.

****

“Could you sign my insurance form please?”

Aimee had been seeing a private physiotherapist for her back pain which started a month ago while she was gardening.

“Is the physio helping?” I asked. Aimee was a fit-looking 32 year old who worked for a city bank.

“Not much yet” she said. “I’m still taking pain-killers and doing the exercises though”

I’m not sure I examined her, she was in a rush, I was running late and she looked well.

Three months later I discovered that she had metastatic breast cancer. The back pain started when one of the vertebrae (bones) in her back fractured because the cancer had metastasised (spread) there. She saw three other doctors before one of them arranged for blood tests which showed signs of inflammation, then a bone-scan showed the metastatic spread and further tests revealed the breast cancer.

Both Mike and Aimee died last year.

I see about 2-3 new cases of cancer a year. Some are like Mike, some are like Aimee.

The secretary of state for Health, Jeremy Hunt has announced, to cheering headlines from the Mail and the Mirror, that GPs who are slower than average to diagnose cancer will be ‘named and shamed’. If I have two patients like Mike I’ll be fine, two like Aimee and I’ll be named and shamed. One year green for good, the next year red for dangerous. If you want to wait until I’ve seen enough patients with cancer to be statistically significant, you might have to wait another 20 years.

Another problem is about which of the three GPs, one A&E doctor and two physiotherapists is responsible. I only saw her once. Guidelines recommend that we start investigating when a new episode of back pain hasn’t resolved by six weeks, but she had only had it for a month when she saw me.

After Aimee’s diagnosis our practice arranged a meeting with all the doctors and trainees to discuss how we could have helped her sooner. I reviewed all the literature I could find on back pain and breast cancer and presented a summary to the other doctors. We read the hospital reports and discussed Aimees concerns and opinions. We instituted a policy of every patient having a usual doctor, because one factor in the delay was seeing different doctors who were more likely to watch and wait than a doctor who had already made their own assessment and done that once. We also made a decision to discuss every patient who was diagnosed with cancer, whether or not their diagnosis is delayed, like Joan who didn’t see a GP until her breast was covered with a giant cancerous ulcer.

I don’t know if it has made a difference, because as a practice of 12000 patients we only see about 20 new cases of cancer a year. But we haven’t had any significant delays in cancer diagnoses since then and all of us really appreciate learning from the cases. Cancer very often presents in ways we don’t expect.

 

Shame is never useful. The natural response to shame is to hide, oneself or one’s actions or both. Another response might be to refer every patient who might possibly have cancer so that someone else, anyone else is responsible, but not you. That would be a disaster. Shame and blame are the last things you want if you’re looking for a culture of openness and safe patient care. The Francis and Berwick reports after Mid Staffs, both pointed to the dangers of a culture of fear,

Honest failure is something that needs to be protected otherwise people will continue to live in fear, will not admit their mistakes and the knowledge to prevent serious harm will be buried with the patient. Francis

Abandon blame as a tool and trust the goodwill and good intentions of NHS staff.  Berwick

According to airline and patient safety expert Sidney Dekker,

Accountability is the willingness to share accounts.

Fear is a grave risk to patient safety.

Shame as a policy satisfies our desire for a simple explanation, a bad doctor for example. This is an ancient myth we tell our children and ourselves; if we can identify the bogeymen, in this case the bad doctors, then we’ll be safe. Shame is also the product of a desire for retribution. Behind policies designed to shame people are not simply newspaper editors looking for headlines, or politicians looking for simple answers to complex problems, but aggrieved relatives, policy-makers or journalists trying to cope with a delayed diagnosis or a medical error.

Their concerns deserve to be taken seriously, very seriously indeed.

But if shame continues to shape policy, it will be a disaster for patient safety.

Of course, this policy may have nothing whatsoever to do with patient safety. It has always been a fantasy of Tim Kelsey (who Paul Nuki from NHS Choices said might be behind this idea) and other policy makers that patients should act more like consumers. In order to do that, the bond between patients and their GPs who they know and trust (but may be a little slower than average in diagnosing cancer) needs to be broken. One might even wonder if the constant denigration of GPs is part of this project. Then with alarming headlines and league tables patients will be scared (enabled) to choose another GP …. (thanks to Richardblogger for pointing this out here)

Further reading/ watching:

Patient safety and quality: An evidence-based handbook for nurses. Chapter 35 Error reporting and disclosure.

Patient safety depends on NHS staff feeling valued, respected, engaged and supported: Culture and behaviour in the English NHS. Mary Dixon-Woods

Referring patients. Doctors’ anxiety has a lot to do with it.

Narrative, listening and forgiveness.  How the process of grieving can lead to forgiveness

Shame – and how it presents in clinical encounters.

The emotional labour of care. Health care is emotional labour.

 

Sidney Dekker- airline and patient safety expert and brilliant speaker: Lecture on Just Culture:

Short version

Full version

My Reality of Do Not Attempt Cardio-pulmonary Resuscitation Decisions

A Story by Dr Gordon Caldwell (@doctorcaldwell on twitter)

There was a frail old man struggling with his breathing in the first bed on the right as our team entered the six bedded bay to see our patient in the next bed. I think there was a nurse with him, but that may just be wishful thinking to salve my conscience. Our night doctors had been busy and needed to get away from their 13 hours shift, to grab some sleep before starting again that evening. We went to see our patient, and of course to maintain dignity and a semblance of confidentiality, we pulled the curtains around his bed. I was concentrating on our patient’s problems and was aware of disturbance from the next bed. Our Registrar left to help out. Soon the whole cardiac arrest team arrived and started cardio-pulmonary resuscitation (CPR) on the frail old man. The bay filled up with more staff, as usually happens during daytime cardiac arrest calls. We finished the consultation with our patient, reassured him as much as we could, and after checking our help was not needed, left to see the remaining patients. Later I went back to ask Sister what had happened. The man had died. The CPR attempt was called off after about 10 minutes. When the admission notes were read out, he had been admitted from a nursing home in the small hours of the morning. He had severe emphysema and poor mobility. I asked the year 3 doctor about his thinking when he had admitted the patient. He thought that the patient was probably dying, but felt he was too junior to make that decision. He chose to wait until the Consultant round in the morning, thinking that the Consultant would make the “Do not attempt cardio-pulmonary resuscitation” (DNACPR) decision. The patient suffered an undignified death, with one doctor doing chest compressions, another attempting to intubate his airway and a host of clinical staff looking on. The atmosphere in the ward was one of shock. The other patients in the bay were clearly distressed as were the nurses, who had wanted to provide kind care to a frail old man as he died. The doctors in the cardiac arrest team were also subdued. I felt that I should not have gone to see our patient, but dealt with the frail old man, although he was under the care of another Consultant. What he needed was a nurse to sit with him and hold his hand as he died; probably he needed some oral morphine to relieve the distress of breathlessness. He certainly did not need CPR.

I have told this story, warts and all, because it encapsulates our dilemmas in hospital about DNACPR decisions. Of course you can criticise all of us in the story. The year 3 doctor should have spoken to the night Registrar, but maybe the Registrar was busy transferring another patient to the Intensive Care Unit. So the year 3 doctor should have phoned the Consultant in the middle of the night to get the decision, but maybe he thought the patient would make it through to the ward round, or maybe he was frightened to phone a Consultant at night. Very likely the year 3 doctor had a host of other patients and tasks to see to, with his bleep going off all the time. When Sister came on at 7 am, perhaps she should have called the Consultant, but it is possible she had not even had time to see the patient and had only had a verbal handover. I could have stepped aside and attended the patient. The Nursing Home staff or General Practitioner could have discussed this with the man, and made an advanced care plan. The man himself could have thought this through, if he still had capacity.

Some of my thinking about this story

All of these potential criticisms are true, and what also is true is that right now, every day, hospital doctors face this sort of problem. I think it will be many more years, before we get to the stage where most people with very frail health have had these CPR issues resolved prior to arriving in hospital. In the meantime hospital clinicians are in an unenviable position. In 2014 there is a steady stream of frail, usually elderly frail, patients arriving in hospitals. Some are inevitably dying and the others despite their frailty will survive this admission, but are at a small risk of unanticipated sudden decline.

Talking with a frail patient who is inevitably dying and with his family is emotional and draining, but straightforward. The decision about DNACPR is also usually straightforward, because most patients want to die with the family around them, in comfort, and with “no heroics”. Discussions with frail patients who will probably survive the admission are complex, emotional and take a long time, but the diseases in all our cohort of patients are running ahead around us. Most acute clinicians do not have the time for these discussions, yet we don’t want to see out patients dying like the frail old man. Why don’t we have the time? Last Saturday I saw 20 acute admissions, of which I thought that 15 had sufficiently frail health that they could not survive a CPR, although none looked as if they were imminently dying. The work of diagnosis, investigation, treatment, documentation, explanation and handover took 8 hours. Another 15 hours of discussion about CPR status, would leave 1 hour before starting to see the next 20 patients that I had to see on Sunday morning. As a clinical team we have to make a judgement that the frail patients, in the event of a sudden unanticipated deterioration, would not survive a CPR, to save them from a violent and undignified death, distressing to patient, family, other patients and hospital staff, who went into their careers to provide intelligently kind care.

Words and Meanings

George Orwell was passionate about the meaning of words. In the book 1984 he showed a society in which words lost their meaning. In 2014 we live in a world in which “wicked” can mean a really great experience. The meaning of the words in this debate really matter.

Cardio-pulmonary Resuscitation (CPR)

A defibrillator is a device that delivers an electric shock across the skin and through the heart. The shock is like the Alt Ctrl Delete key combination, shutting a Windows computer down, in the hope that it will reboot successfully. The electric shock to the heart stops the heart’s electrical timing activity in the hope that the heart will reset itself into the right rhythm (sinus rhythm, SR). Defibrillators came into use in the 1960s to treat ventricular fibrillation (VF) and ventricular tachycardia (VT) in patients who had had a coronary thrombosis.

Coronary Thrombosis, Ventricular Fibrillation (VF), Ventricular Tachycardia (VT), Asystole and Pulseless Electrical Activity (PEA)

A coronary thrombosis or myocardial infarction (the words mean the same) is commonly called a “heart attack”. One of the arteries supplying blood carrying oxygen and glucose to the heart gets blocked by a blood clot. Usually the patient experiences severe crushing pain or tightness in the middle of chest.

When parts of the heart are starved of oxygen and glucose, the heart muscle eventually dies and turns to fibrous tissue. These days, with early interventions, the damage can often be limited. In the early minutes after the blood clot has blocked the artery, in a few patients, the heart rhythm becomes very unstable and the patient suddenly collapses into unconsciousness. Here is one place where words really matter. This collapse can also be called a “heart attack” by patients and the media, whereas doctors would call this a “cardiac arrest”. In a cardiac arrest a patient suffering a coronary thrombosis develops unstable electrical activity so that the heart stops pumping blood. Unless urgent action is taken, the patient will die.

The unstable electrical activity can be VF, VT, asystole or PEA.

In VF the ventricles, the main pumping chambers of the heart, develop a totally chaotic electrical activity. In VT the ventricles beat so fast that the heart scarcely pumps any blood at all.

In asystole the electrical activity stops completely. In PEA the electrical activity continues, but the signalling between the electrical activity and the heart muscle is broken.

The defibrillator is more effective in VF and VT than in asystole and PEA. In VF and VT, the electrical shocks can reset the timing processes and sometimes the heart starts beating again in the normal rhythm. When this happens it can be really exciting and dramatic. I have seen patients collapse unconscious in front of me, and the heart is in VF. In a coronary care unit it is possible to charge up the defibrillator and apply a shock very quickly, so that the patient comes round almost at once. On rare occasions the patient can even resume the sentence he was speaking. Without a defibrillator he would have died. Sometimes the shocks do not work, it is impossible to get the heart rhythm reset and the patient dies. I can recall many, many more failed defibrillations than successful ones.

During a coronary thrombosis asystole and PEA are very difficult to treat and the prognosis (chance of success) for restarting the heart is far worse.

After the introduction of the defibrillator it soon became apparent that permanent brain damage can ensue unless a good blood flow from the heart beat is established, in adults, within a few minutes. Some blood can be pushed around the body by cardiac compressions. In cardiac compressions, provided the patient is on a firm surface, compression of the sternum by forceful downwards pressure of the hands, blood gets squeezed out of the heart to the brain and other vital organs. The force required is substantial – much more than kneading bread, perhaps more like using a large bilge pump on a boat. The amount of blood squeezed out is more if the lungs get filled and emptied of air. During CPR it is common to intubate the trachea and use a bag to force extra oxygen into the lungs, and also so that if the patient vomits, the vomit does not go down into the lungs. Cardiac compressions are forceful and can cause damage. Post mortem studies after failed CPR commonly show fractures of the sternum and ribs, and these are inevitable in old people with osteoporosis. The injuries are similar to hitting a steering wheel in a car crash in the days before seat belts and airbags. I can right now, as I type, still feel from many years ago that peculiar sensation with the first compression as the sternum gives way and a number of ribs crack.

In the 1960s Cardiac Arrest Teams were trained to do cardiac compression and intubation with ventilation, whilst the defibrillator was brought along in the hope of correcting the heart rhythm. Some patients with coronary thrombosis, who would otherwise have died, were brought back to life. This led to the development of coronary care units (CCU). Then the cardiac arrest teams started going out on “crash calls” to patients who collapsed abruptly on the general wards. The success rate on the wards was far less, mainly because these patients were not suffering a coronary thrombosis, but dying of other conditions like blood clot to the lungs (pulmonary embolism), pneumonia or cancer. In all deaths the heart stops, but in very few deaths is the cause a myocardial infarction and potentially reversible VF or VT. Nonetheless by the 1980s, in some hospitals, it had almost got to the point where a patient could not die without a crash call and a CPR attempt. This may have been one of the reasons for the development of Hospices; to save patients from the traumatic CPR death. I was involved in many crash calls in the 1980s, and I am ashamed to admit that many of us took the opportunity to use these to learn how to place central lines or practice draining a cardiac tamponade. For junior anaesthetists it was a chance to hone skills in urgent intubation. Thank goodness we now have good simulation suites.

Then someone thought that it would be good to try using defibrillators outside hospital in “Out of hospital cardiac arrests”. Again in some circumstances this worked and lives are being saved every day. You can see defibrillators at railway stations, airports, and popular tourist destinations. In general these were used on people very different from those in general wards in hospitals. In the 1980s if you had reached Victoria Station and as you rushed to the Tube, had a coronary thrombosis complicated by VF, in medical terms you were a medically fit person. “Medically fit” these days pretty much means you can go up one flight of stairs at a good pace, and that every day you usually walk outside your house under your own steam. So CPR on Victoria station in the 1980s was only being done on a selected group of medically fit people. In 2014 with electric buggies people who are “medically not fit”, can get all the way around the world!

In broad terms, and clinicians are well aware of all the other causes of VT and VF, CPR was developed to try to reverse chaotic heart rhythms during a coronary thrombosis. Success was much more likely the earlier defibrillation was done, and was much more likely in patients under 70 years of age. Significant brain damage occurs in an important proportion of survivors. CPR and defibrillation was very unsuccessful in “medically not fit” patients on the wards, but had limited success in out of hospital cardiac arrests.

Medical Emergency Team (MET)

However some patients really benefitted from the cardiac arrest team’s arrival. A lot of “crash calls” were not for patients with a cardiac arrest, and viewed as false alarms. Some had epileptic convulsions, some had major haemorrhages, low blood glucose levels, obstructed breathing, or sepsis. Today many hospitals have Medical Emergency Teams (MET) or outreach teams from the Intensive Care Unit. If a patient is listed as DNACPR, he must not be automatically excluded from MET or outreach calls. Many frail patients can benefit from fairly invasive treatments provided by a MET, and may even need to go to a high dependency unit. Being listed for DNACPR must not mean “do not attempt any clinical care”.

Respiratory Problems

I heard a story that a patient with an obstructed airway was allowed to die by paramedics, because the patient had a DNACPR in place. Once again words really matter. Interventions to restore breathing are in general far less traumatic than cardiac compressions. A very simple suction device can remove sputum that a frail patient cannot cough up, or a lump of meat that has gone down the wrong way. It may be far better to have a code for “Do not attempt cardiac compressions” (DNACC) than “DNACPR”. Obstructed breathing is extremely unpleasant and should nearly always be actively relieved.

Frailty

I have mentioned frailty many times, without defining it. Physical frailty has little to do with quality of life, it is to do with physical quantity of function of the body. Of course someone with very little physical function can enjoy a “good” quality of life, enjoying family, reading, TV, even getting out of the house. Many Junior Doctors seem to think that because someone is a “nice” person, can play bridge and read a book, they should be listed for CPR, because he has a good quality of life!

I try to explain this concept of quantity of function of the body in terms of Jenga bricks. Imagine in the tower of bricks there are four labelled “Heart”, four “Breathing”, four “Brain”, four “Kidneys”, four “Skin” and so on for all the vital organs and processes, and four bricks for “Cancer”. Now imagine you are 80 years old and are playing Jenga with your grandson and you each have your own Jenga tower. Please don’t do this, its far too morbid!. Of course you want him to win, so you allow him to remove bricks from the top of his tower, but you have to take bricks from the lower half of your tower. Even losing 2 Heart bricks for the youngster hardly matters e.g. hole in the heart repaired, his tower stands firm. However your tower becomes wobbly after a heart (heart attack), lung (emphysema), diabetes, kidney, and brain (minor stroke) brick have been removed. Eventually even a little jiggle of the table e.g. a urine infection, is enough to bring your whole tower down. If someone came along with a hammer (CPR) your tower would inevitably fall. Ageism is inappropriate in many areas of medical practice, but not in relation to CPR. The chances of survival after a CPR attempt diminish progressively with age.

So if you are 80 years old and being treated for angina and heart failure, emphysema, diabetes, kidney disease, have had an operation for bowel cancer, and arthritis so bad you cannot get out of your house, your health is frail. Some younger people can also have very frail health, a few very old people have robust health. Mobility really matters, so if a relative of yours is 85 and spending 50% of daytime hours in bed day in, day out, health is frail.

Of course our population is getting older. Dementia is becoming more common. This means that a large proportion of patients admitted to hospital as emergencies are now in frail health. If they have advanced dementia or delirium then they may no longer have the capacity to make decisions about treatment or choosing not to have treatment. I strongly suspect an important proportion of frail patients don’t want all the tests and treatments a big modern hospital processes them through in obedience to guidelines and pathways. Very few of them are admitted having a coronary thrombosis, and thus at risk of VF or VT. Even if they did, with their frail health, the treatment simply would not work.

Resuscitation

This is the word that causes huge misunderstanding.

By Resuscitation Doctors mean “Cardiac compressions, intubation, ventilation and attempts to restart the heart, when the heart is in VF, VT, asystole or PEA, because of heart disease”. So “DNACPR” should mean just that and still do everything else that is appropriate, but do not attempt an invasive process that is doomed to fail and serves no one any good at all.

Unfortunately even nursing staff can interpret DNACPR as “we are not really trying any more with this patient”.

For the patient and carers “Do not resuscitate” can also sound like “Oh they are not going to look after me anymore” and of course easily becomes “I must be about to die very soon, and they won’t care for me.”

Are you baffled now? I am feeling baffled. How did we get to the point that almost by law and certainly by recommendation of the General Medical Council (GMC) Doctors are meant to actively discuss DNACPR decisions with patients are relatives. CPR “works” in very specific circumstances of a coronary thrombosis (and a few other conditions) complicated by VF or VT, and even then is far from universally successful. (I know there are other circumstances in which it works like primary VF). In other circumstances, in simple terms, CPR does not work, and it certainly does not work in frail elderly people. There are many other treatments that do “work” in frail elderly (see MET above), and much we can and ethically must do for these frail patients.

So what’s the problem, Gordon?

The patient who is inevitably dying

If the patient is inevitably dying there is usually no need, other than the GMC and law’s orders, to discuss CPR status. In full open discussion with the patient, carers and clinical team the patient’s wishes are explored. Commonly patients envisage dying surrounded by caring people, as the patient is kept pain free, warm and clean. No mention is made of wanting a cardiac arrest team to arrive as the patient slips into death. So why do we have to actively explain CPR to the patient and carers, to say we are not going to do something that they don’t want and won’t work? The use of the words “not resuscitate” in this emotional and difficult conversation can easily be misinterpreted as “They are saying that there is nothing they can do, they are going to abandon me”. Even worse we doctors often say “There is nothing we can do”, when we mean “Your cancer had caught up with you, you are dying, we are going to be with you through this, come to you, help you, talk, relieve your pain, laugh and cry with you.”

The frail patient who slowly deteriorates after admission

Again this situation is straightforward, even if painful and emotional. The main problem now in hospital with shift working and lack of continuity of supervision is spotting that they patient is inexorably deteriorating. Sometimes we also forget to review the CPR status, as time slips by. However once the clinicians recognise the inexorable deterioration, this leads to conversations about death and dying. As above unless the patient or carers raise the issue, I cannot see that discussion about not using a futile invasive treatment that the patients does not envisage, is helpful in any way. Of course sometimes patients or carers raise the issue and then it is all straightforward, as everyone agrees “No heroics”.
Should the patient or carers ask for or demand CPR a very ugly situation ensues. By law and by medical ethics it is clear that such a demand does not have to be fulfilled. So why do we pretend to offer a choice, when should the patient say “I want it” we then have to say “No”! The outcome is usually then that the patient gets relisted as “For CPR” and at the moment of death the cardiac arrest team comes, the family are rushed out of the room and the team undertakes a cursory attempt at CPR. Someone in the team reads out “78 years old, bedbound for the last 6 months with metastatic cancer” and the leader calls “Stop”.

The frail patient who is expected to recover and go home, but who would not survive a CPR

So, finally to the nub of the problem. The majority of patients admitted under my care are over 80 years old, or over 75 years with multiple health problems so that their condition can be described as “medically frail”. I am not a Geriatrician, I am a General Physician and this has been a major demographic change since I qualified in 1980.

Although these patients are “frail elderly” only about 3% die during an admission under my care. Most of these cases are inevitable deaths from advanced cancer or advanced dementia with immobility. You could argue that they should not come to hospital at all, but they do! As I described above, the care is straightforward but challenging and can be very rewarding.

However a small proportion of frail patients expected to survive to discharge from hospital, suffer an unexpected major deterioration, and whilst the patient is dying the cardiac arrest team will be called unless a DNACPR is put in place. This deterioration can happen any time after admission, so to save the patient invasive futile harmful treatment the clinical team has to decide “DNACPR” very shortly after admission, at the very same time as the team is most in demand for acute care of a cohort of patients. Even for the patient in question there will be a lot to do – start the antibiotics for pneumonia, explain that there may be a lung cancer on the X ray, arrange blood tests for the next day, speak to the partner who is worried at home, write a referral to physio and OT etc. Then there are all the other patients to be seen, for example there may be a patient with meningitis or another with a major bleed from a duodenal ulcer, in need of urgent treatment. Would it be right to spend an hour agreeing a DNACPR, maybe with a relative on the other side of the world, in a patient who probably won’t deteriorate, whilst we leave two acutely ill patients with treatable conditions, to deteriorate? The clinical team cannot get it right; it is in an impossible situation and one that neither the patient nor the clinical team should be in. For the clinical teams on our general wards it is now both everyday and ordinary. As I said, last weekend I was responsible for about 40 admissions over 2 days. The majority of whom would not survive a CPR, but most of whom survived to discharge. They need a protective DNACPR decision, whilst we do all their complex difficult clinical care of diagnosis, treatment, review and all the time with lots of communication!

The experience of CPR discussions can be disturbing for the frail patient. For example our team may review a patient and she is told she has pneumonia, emphysema, weight loss, diabetes, some temporary damage to the way the kidneys work, and of course she knows she had a stroke and a heart attack last year. We are treating her with 48 hours of intravenous antibiotics, and hope she will be good to go home in 4 days time, if the physios help her back onto her feet. Then we are meant to have the discussion about CPR. So I will dramatise the conversation “Oh yes, and in the meantime, should your heart stop, would you like us to have a go at restarting it? Personally I would not recommend it”, “No”, “Ok lets sign the red form” (I have heard conversations not much different from that!). Then the patient is left asking herself “Did they say I am going home in 4 days, or that my heart is going to stop and I will be left to die?” I know because a patient told me this a few months ago, after someone had had the CPR talk with her. You could say “Well the nurse will explain it all to her after the round.” For 65% of my bedside reviews there is now no nurse there to hear the conversation, to then be able to explain what was said. This is the reality of working life on General Wards in many NHS Hospitals. It is far better on specialist units.

What lies ahead, is there any hope?

The hope is that society and individuals wake up to the fact that death is eventually inevitable and increasingly likely after the age of 80 in previously fit people and in those over 75 with “frail health”.

We need to learn to think ahead to how we would like to die, when the time comes. Most doctors would relish patients and carers who come wanting help and advice on this. Medical professionals also need to learn to be straightforward in communication as well as curious about patient’s actual understanding. For example oncologists tend to be optimistic people and communicate to patients receiving palliative chemotherapy that it is a treatment. Patients take this to meant “a curative treatment” whilst the oncologist thinks he has communicated “This is quite a toxic and time consuming treatment that may prolong your life a bit”. It can be a great shock to these patients when they arrive in hospital and we give a prognosis of days. However it can be difficult for Doctors to give advice about CPR, because the number of CPR calls is falling, so they may not have any first hand experience of what a CPR is like. The numbers are falling because we are getting better at recognising frailty and better at discussing impending end of life and so avoid futile CPR.

GPs using the “Gold Service Framework” are taught to ask “Would I be surprised if this patient died in the next year?” If the answer is “No, I would not be surprised”, this can provide the GP with a prompt to open up discussions. We should do this much more in hospital, but time pressures are a major barrier. All hospital doctors have ward patients, clinic lists, and possibly operating lists. Most already have completely full days, and are working beyond hours, often with few breaks. We could take on this important aspect of patient care, if we had the time. Senior nurses are as capable (more capable?) at these conversations, but are also under huge pressure. We know from Mid Staffs that nurses can be so task saturated that even their humanity can be eroded. A nurse frustrated that she does not have enough time to provide basic human care, is not going to be in the right frame of mind for an emotional one hour conversation about DNACPR.

So, as ever, it is mainly in the hands of our patients and carers to prepare themselves. Failing to prepare is preparing to fail. The emotional traumas of dying and death can be lessened by anticipation and planning. Advanced care directives talked through with a trusted doctor or nurse and validated by a lawyer can be very helpful. Have the courage to ask your Doctors about prognosis. If you don’t want heroics, even if you want to cut down your huge list of medications, talk with your family, talk with us.

I believe when you ask us to “Do everything, Doc” what you really mean is “Do everything that you as an ethical medical professional believe is wise, likely to work and kind and not cause unnecessary suffering.” I say that because when a patient dies the very first question the relative usually asks is “He didn’t suffer, did he doctor?” A death under CPR inevitably causes suffering.

That frail old man in the first bed could have died quietly with one of our lovely nurses holding his hand and talking with him. It is misunderstandings about words and their meaning that robbed him of a calm end of life.

Dr Gordon Caldwell FRCP London
GMC 2648903 (should you want to report me to the GMC after reading this)

Further reading:

Do not resuscitate My own experience of CPR as a junior doctor.

Is discussing futile treatments really best for dying patients?  Margaret McCartney BMJ June 27th 2014

Doctors and Death A story. Includes lots of references and teaching material.

Death in the life of a GP

Presentation to the Royal Society of Medicine Palliative Care section.

My first death was at the age of 17. I was working at Winchester hospital as a nursing assistant in 1988 and the ward sister asked me to spend my night shift with an elderly woman who was expected to die. She had advanced dementia and had suffered a stroke so that she was paralysed down her left side. She slept peacefully, occasionally moaning when she moved. As the night went on the ward sister bought me cups of tea so I wouldn’t have to leave my patient. At about 4.30 her breathing began to change, it slowed and became irregular. I called the sister who came over and drew the curtains around. I held the old lady’s hand and watched her silently and intently. She had no family, no friends left alive with whom to share her last night on earth. Her breaths were so quiet, I hardly dared breathe myself. At about 6am she stopped breathing. With the ward sister’s help we washed her and wrapped her in a sheet before the porters came to take her to the morgue. It was one of the most formative experiences of my life.

 

Sociologist Arthur Frank described 3 narratives that we tell about the practice of medicine.

 

The first is Restitution,

 

Restitution is the story we are familiar with from medical dramas – it’s the one we tell each-other in medical school. In the restitution narrative the doctor as hero rescues the patient from the disease and health is restored. Note that the patient is merely the field on which the doctor and the disease do battle. The restorative narrative of palliative care is one in which the heroic doctor relieves the patient’s suffering and death is dignified. In Winchester hospital that night I was part of a restitution narrative, I was simply sitting up all night with someone who was dying, but it felt heroic. It’s worth reflecting on our attachment to and desire for the restitution narrative, especially when things don’t work out this way.

 

When things don’t work out we have Frank’s second narrative, which he calls Chaos.

Marjorie 1956

This was my grandmother in 1956. When she died I was 21 and half-way through medical school. I remember her vividly from very early in my childhood. I adored her. In the ‘30s she modelled for Vogue magazine and was always beautifully dressed. For the last 5 or 6 years of her life I barely saw her. The woman I knew and loved had Alzheimer’s disease, she was violent and psychotic. Physically she was incredibly strong, but her mind was completely gone and she needed specialist care. The last time I saw her she was sedated and couldn’t speak. It was extraordinarily upsetting, I completely withdrew from her for the last few years of her life and felt – and continue to feel guilty – for abandoning her, and my parents at that time.

80.29

Her son, my father, Peter pictured here at his 80th birthday party, saw the same thing happen to his father and his youngest brother, and has lived his life in fear that the same thing would happen to him. He has staved it off for as long as possible, but for the last 2 or 3 years the signs have become increasingly clear. He had enough insight to develop a deep depression which has been impossible to shift, but it’s now reaching the point where his insight along with his balance and his continence are failing. I’m not entirely sure I’m going to manage this any better than I did with my grandmother.

According to Frank,

“To deny the living truth of the chaos narrative is to intensify the suffering of whoever lives this narrative. The problem is how to honor the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism.”

The chaos narrative presents the greatest difficulties for those of us whose job it is to listen. We are left with a sense of unbearable helplessness and if we cannot cope, we respond by withdrawing or running away. Some of us become doctors to deal with this helplessness, as one consultant psychiatrist writing about her own experience of mental illness says,

… some of us self select medicine in order to deal with our worst fears by helping those who present with what would be to us, intolerable illnesses, but by working on them in our patients we master some hidden angst.

Writer Jonathan Mann expresses clearly our attachment to restitution,

Yet most people who decide to become doctors respond to a deep intuition about life and their own lives. To become a doctor implicitly places us on the side of those who believe that the world can change – that the chains of pain and suffering in the world can be broken. For every medical act challenges the apparent inevitability of the world as it is, and the natural history of illness, disability, and death. Every antibiotic, every surgical intervention, every consultation and diagnosis becomes part of an effort to interfere with the “natural” course of events. Thus, at a profound, even instinctual level – because it precedes rational analysis – people become physicians to find a way to say “no” to disease and pain, and to hopelessness and despair – in short, to place themselves squarely on the side of those who intervene in the present to change the future. 

But if a story can be told then it is not entirely chaos and in that there may be a therapeutic opening. The challenge is not to push toward this opening prematurely with our own restitution narrative. ‘The chaos narrative is already populated with others telling the suffering person that “it can’t be that bad”, “there’s always someone worse off”, “don’t give up hope”, “it’ll be OK”; and other statements that ill people often hear as allowing those who have nothing to offer feel as if they have offered something”.’

How then can we honour suffering without imposing our own desire for a restitution narrative?

The final narrative Frank describes is ‘Quest’

“Quest stories carry the unavoidable message that the restitution narrative will, one day, prove inadequate. Quest stories are about being forced to accept life unconditionally; finding a grateful life in conditions that the previously healthy self would have considered unacceptable.”

A story.

“I couldn’t possibly ask Dr Brown, it would break her heart”

This wasn’t the first time I’d been put in this situation, but it doesn’t happen often.

“She’s known me for such a long time, I’d feel like I was letting her down”

I began to wonder if my own patients were having similar conversations with other doctors.

“She’s such a lovely doctor, and I’m sure you are too …”

She smiled a little to sweetly for comfort.

“You will help me won’t you doctor?”

“Tell me” I ventured, “why do you think you would be letting Dr Brown down?”

“Oh, she’s done so much for me, I couldn’t have asked for a better doctor. She’s literally saved my life. But now I’ve had enough, I’ve had a good life, don’t get me wrong, but I don’t want to go on forever, the ones I loved are all gone, and I don’t want to wait for another stroke.”

“Have you tried discussing it with Dr Brown?” I asked.

“I don’t think it would be fair to ask Dr Brown, I know her very well you see. She spent years looking after me and my husband and it was very hard on her when he died.”

“What happened?”

“Do you have time doctor? I don’t want to keep you.”

I knew from the outset that this wasn’t a consultation that could be rapidly resolved.

“Jim was a lovely man – and he was very fond of Dr Brown as well. She was his doctor for years too. I remember when he was diagnosed how upset Dr Brown was, I don’t blame her, but I still think she blames herself for not spotting it sooner. You see, Jim didn’t like to bother the doctor. He and Dr Brown used to joke that he was just coming in for his check-ups so that Dr Brown could tick all the boxes so she could get paid. He used to tell her, ‘you can tell them I’m taking whatever pills you want – I’ll take ‘em if you tell me, except mostly when I feel like, but you just tick your boxes and make sure you get paid. You deserve it and we need you. And while you’re at it my colly-esterol is none of their business, but it’s whatever you need it to be and I’m giving up smoking and taking up cycling and you can put that down too. And if you need to check my prostate, well that’s ok an’ all, but if you don’t mind not right now, but just make sure you tick that box and say I’ve agreed to it. There’s much sicker than me that need you Dr Brown and I don’t want to be wasting your time’”.

There were tears at the corners of her eyes while she reminisced.

“It was funny really, he’d say that, about not wasting her time, and they they’d talk about cricket or politics for another ten minutes. It’s sad really, there are people who are really struggling who have to wait to see their doctor”.

I agreed with her, but was conscious of time and tried to steer the conversation,

“What happened with Jim’s diagnosis?”

“Oh well, he was feeling tired and weak for a few weeks and had been dropping things quite a bit, which wasn’t like him at all and I eventually made him go and see Dr Brown. But I didn’t go with him and I don’t think he really told her what was going on, but she did some tests and they came back all normal. He told her that he was OK and he didn’t want to make a fuss and so she didn’t do anything else for a while. Thing was they trusted each-other, if he told her he was OK and didn’t want any bother she respected that. I don’t think she could have done anything different. But he wasn’t himself. Then he had a nasty fall when he was out walking the dog. He broke his shoulder and when he was in hospital they did some more tests because there was something wrong with his muscles and they said that he had motor-neurone disease and he had probably had it for at least a year. I think that’s when Dr Brown felt guilty because it was about that long that he had been feeling weak. To be honest, she was fantastic after that, he hated for her to come around because he didn’t like the idea of wasting the doctor’s time, but when it was too difficult for him to come to the surgery she would come in the evenings or in her lunch-breaks.

They never really talked about death, I think they wanted to but were too afraid. I remembered once she asked him if he’d thought about it or made any plans, and he told her not to worry about it, ‘I’m much more interested in living,’ he would say and then ask her what she thought about the cricket.

And then one day he got all confused and we tried to call Dr Brown, but she had gone away on holiday, I remember because she called us back from Italy but by then he was in hospital and they were giving him all sorts and he didn’t last long, but it’s not what he would have wanted.

Thing is doctor, I don’t want any of that to happen to me, I don’t want to be any bother to anyone, blocking up a hospital bed, surrounded by strangers. I was just hoping you might be able to give me something, so that when I’m ready I can go into a nice deep sleep.”

 

Doctors often avoid difficult discussions about death to protect themselves. And patients – especially when they care about their doctor, avoid these conversations to protect their doctors too.To talk about death requires doctors to confront their own attitudes to death and be attentive to their own emotional needs including the need to be protected from conversations about death.

The experience of suffering is often one in which old friends disappear, in which others may be lost for words or uncomfortable hearing about sickness. Many patients become isolated and alone because their illnesses have become so overwhelming that they feel they have nothing left to talk about and they don’t want to burden their friends, or even their doctors, ‘who have troubles enough of their own’. We may be poor listeners because we ‘want to steer the person back to being the person they were before’ rather than the new person they have become.

In her essay, The Art of Doing Nothing, Iona Heath explains that in medicine, “the art of doing nothing is active, considered, and deliberate. It is an antidote to the pressure to do and it takes many forms.” She quotes Arthur Kleinman, the American anthropologist and psychiatrist, who says:

… empathic witnessing … is the existential commitment to be with the sick person and to facilitate his or her building of an illness narrative that will make sense of and give value to the experience. … This I take to be the moral core of doctoring and of the experience of illness.

Bearing witness by empathic listening is emotional labour. Any doctor who has felt tired or forlorn after spending time with a patient in chronic pain, understands the burden that we feel when our patients share their suffering. We know that this is hard work, indeed, compassion means ‘to suffer together’.

Emotional labour is of a very different quality to technical labour. The ways we teach the technical labour of surgery or pharmacology are not suited to teaching ‘empathic witnessing’. Anyone who doubts the importance of these human skills should read the accounts of doctors who have experienced serious illnesses. Iona Heath again says what we know to be true,

‘I know I can see you through this’ is the commitment doctors can make to the dying when doing has become futile and even cruel. Simply being there and bearing witness is never futile.

Empathic witnessing is a practice that needs lifelong nurturing. Professionals need not only enough time to spend with patients but also regular opportunities to reflect and discuss the emotional and ethical issues that comprise this work. Narrative supervision is one way we can help with this.

I hope that by reflecting on and sharing my own experiences I will have more courage to bear witness and accompany my patients and my family up until the end of their lives.

 

Further reading:

Do Not Resuscitate

Doctors and Death

Narrative Palliative Care: A Method For Building Empathy

The Inner Life of Physicians and Care of the Seriously Ill 

Arthur Frank, The Wounded Storyteller

Arthur Kleinman: The Illness Narratives, Suffering, Healing and the Human Condition.

David Zigmund, Physician Health Thyself, The Paradox of the Wounded Healer

How to respond to the recently bereaved. DocMum blog.

Iona Heath, Matters of Life and Death

 

 

 

 

 

 

 

 

 

The Future of General Practice?

Originally published on the Centre for Health and the Public Interest Blog. Please visit their excellent website http://chpi.org.uk/ for detailed papers looking seriously at health-policy that relates to the public interest.

 

The government has laid out its ‘Plans to Improve Primary Care’, focusing on GPs. Few GPs will read this tediously repetitive, wordy document, full of un-evidenced assumptions – that IT, home care and schemes to avoid hospital admissions will save money. Gimmicks like a named GP for patients over the age of 75 reveal how little they understand which patients most need continuity of care and the ‘Friends and Family test’ has not been shown to have any effect on quality. Labour’s response, apledge that patients can book to see a GP within 48 hours is a political target that has nothing to do with clinical need and will be fiddled, fudged and ignored. Such gimmicks from both sides will not help patients and will only add to the frustrations and lack of trust towards government among the profession.

What could the future of General Practice look like, realistically – taking into account patient needs, increasing demand, and policy and financial pressures?What follows is a description of what is already possible. I am not aware of any practice that works exactly like this, but some practices are very close. You will see that one aspect is the way appointments are organized. One GP surgery’s experience of changing its appointment system has been written up in a blog by GP Heather Wetherell. Evidence of confidence in this kind of system can be seen by commercial organisations like Doctor First and Patient Access that help GPs make the change. Another aspect is patients’ access to their GP records.  Amir Hannan, Brian Fisher and Patients Know Best have pioneered ways for patients to access their GP records. Many practices are incorporating these changes. They are being driven by GPs in response to patient needs, increasing demand and policy pressure.

The Future of Primary Care – a possible scenario

Five doctors, all GPs, and two nurse practitioners are sitting in a large room wearing headsets. They are separated by booths so that neighbouring conversations cannot be overheard by patients. Two of the GPs have a trainee listening-in through a second headset. It is a Monday morning and they are managing the demand from a practice with thirteen-thousand registered patients. The calls come through to the receptionists who add them to a single list that appears on the screens in front of the GPs. Patients who are distressed or have serious symptoms like breathlessness or chest pain are highlighted. Patients who are unable to use a phone or cannot speak English still come in to the surgery. On a Monday morning they handle about 250 calls, see 40 patients face to face and do 3 visits. Other days tend to be much less busy. Occasionally a patient is put on hold and the doctor or nurse asks one or more of their colleagues in the room for advice.

The nature of a clinical encounter is far more suited to a phone-call than email because of the quite intense nature of listening, questioning, clarifying, mutual understanding and reassuring that goes on. In a consultation, narratives are explored and created. This is far more suited to a conversation than an email exchange. Email still accounts for a tiny proportion of interactions. On the policy advice of mostly young, fit men, there is a risk that the government will squander millions on secure on-line consultation technology that will lie largely unused. Such is the nature of healthcare schemes dreamed up by fit, young men.

Calls take anything from a minute or two to half an hour or more. The written documentation has to be thorough and records are audited regularly by listening to the calls that have been recorded and reading the notes. I’m found guilty of writing too little and it’s a useful bit of feedback. My practice improves.

Every few minutes one of the doctors or nurse practitioners gets up and goes into the waiting room to call a patient that they have invited to come in to the surgery. They lead them into one of five consulting rooms and are with them from 2 to 30 minutes depending on the patient’s needs. Average consultations are about 12 minutes, but the doctors and nurses have the advantage of knowing in advance why the patient is attending. The problem of patients failing to attend appointments has almost been eliminated.

Four or five times a day a doctor goes out to visit a patient at home. Around here where I work in Hackney, most doctors do their visits on bicycle or foot simply because it is the easiest way to get around. Dealing with demand by phone has reduced the need for visits, perhaps because patients are more confident of getting through to a doctor when they need to.

Every patient will be registered with their own doctor, and if they are on duty will be called by them. Both doctors and patients value continuity of care. Patients will often wait to call on a day when they know their own doctor will be on duty. If they cannot, and their problem is complex or longstanding, another doctor will ensure it’s safe to wait and arrange for the usual doctor to call back. Out of hours calls and A&E attendances have also significantly reduced.

The practice has invested several thousand pounds setting up the call center and telephone bills have increased significantly, but they have saved on space by reducing the number of consulting rooms, and are sending far fewer letters. In a few years they hope to recoup their costs.

The service runs from 8am to 6.30pm Monday to Friday with later evening booked appointments. Once access improved, demand for late appointments diminished and hours were cut to save money. GPs are usually working until 8 or 9pm to finish their admin. When the surgery is closed, local practices share the workload using a similar model working shifts with the local social enterprise which comprises 34 GP surgeries. Patients can speak to a local GP at any time of day or night, but most prefer, and are encouraged, to speak to their own GP for reasons of continuity and safety. The ability to access every patient’s electronic record is still a pipe dream that extends back and forwards into the mists of time, littered by untold billions of wasted pounds. Fortunately most patients can access their own records and though many of the most vulnerable are unable or unwilling, it helps somewhat.

Doctors work shifts with protected time set aside for administrative tasks, teaching sessions and meetings. Their shifts are advertised so that their patients know when they are available. Patients are surprised to find out that each full-time GP is responsible for over 1500 patients, takes over 50 phone calls a day and spends over 2 hours a day on admin and up to 6 hours a week in meetings, teaching, etc. Every month the practice publishes data showing how many patients have been seen and how long they waited for their call to be answered and for the doctor to call them back. They also publish an anonymised summary of patient complaints and the actions they are taking in response. Complaints have reduced from several a week to a handful each month and patient satisfaction has increased from just over 70% to over 90%.

Planned care for chronic diseases like heart-disease, diabetes, asthma, contraception and antenatal care is still booked in advance with the practice nurses and midwives face to face. Patients needing blood tests, ECGs and breathing tests are seen by nursing assistants, some by appointment and some by a walk-in service. The nursing assistants are also trained as receptionists and when the phones are busiest, they work in reception. Patients are also offered minor surgery, physiotherapy, psychology and antenatal care. Patients from local GP surgeries who do not offer these tests because they lack the space or resources can come to a neighbouring surgery than has the facilities. A contract has been set up so that practices that are willing and able to offer services which others cannot, will be paid to do so. This way, patients do not have to go far for their tests and can stick with their local GP who they know. Local surgeries are supported and share resources and expertise. The contracts are repeatedly contested by private companies like Virgin and Serco, but thanks to campaigning by local patients we are able to keep the services in GP surgeries where patients actually want to go. The time and costs involved in tendering for the contracts is burdensome and takes clinicians and money away from patient care.

There are downsides.

Making the changes is very stressful, as described by Dr Heather Wetherell. In many cases practices eventually change when present systems have become intolerable and those that are working in them are already stressed. The changes are designed to improve the experience for patients rather than those that are looking after them and for some doctors the added pressure of major change is too much. Nevertheless, practice staff do feel satisfied knowing that they can help every patient that needs them, appointments are never wasted, complaints are down and patients are happier. Receptionists no longer have to tell patients they cannot see their doctor for 2 or 3 weeks. Doctors are working even later into the evenings than used to be the case in order to finish their administrative tasks and the pressure to answer a never-ending queue of calls is relentless. Finding suitably experienced nurse practitioners is extremely difficult and understaffing is a serious problem. It takes about 6 months for the new system to bed-in and inevitably, some patients are angry and confused to start with despite efforts to explain the changes.

If a doctor or receptionist is off because of sickness, pre-booked appointments rarely have to be cancelled as they are now, but the work has to be covered by the remaining staff and the time taken to return calls from patients increases significantly and everybody who can ends up staying late. Resentment towards those who cannot stay late has to be managed. It is very difficult for doctors to plan work after their shifts are supposed to finish.

It doesn’t suit some patients who cannot use the telephone because of speech and language barriers, cost, etc. – some don’t have phones, and some don’t like using them. Allowances are made to ensure that these patients can book appointments directly and because of the flexible appointment system they can be seen on the day if necessary. Making a diagnosis on the basis of what I see when I meet a patient face-to-face remains an important part of my job and I’m worried about patients now being able to choose to see me.

Final comment.

With the exception of A&E, other parts of the NHS are being forced to restrict access to cope with serious and prolonged underfunding. A system of GP access that is demand-led means that GPs cannot restrict access and so will take the strain when other parts of the system do. A letter from senior NHS managers in the Guardian highlights the dire situation now. Of particular concern are changes to the GP contract that could see up to 100 GP practices, including ours, close. We are set to lose up to £200,000 a year, equivalent to 2.5 full time GPs or 300 appointments a week.

This could be The Future of Primary Care, but we do not have enough GPs to meet patient demand. The risk is that GPs will put up barriers to protect themselves from demand they cannot possibly hope to meet.

It is vital that we remind those in power that despite being an oft-repeated command to dying institutions, the ability to do more with less is an inherent impossibility.’

How to destroy General Practice. Margaret McCartney. BMJ June 16th 2014

GP numbers tumble in England as recruitment crisis bites. Guardian June 14th 2014

Almost 40% of GP training places unfilled in some places in the UK Pulse June 14th 2014

Plans to shift hospital care into the community doomed as district nurse numbers tumble. Guardian June 17th 2014

Something is profoundly wrong with the NHS today. Clare Gerada. BMJ Careers June

Save Our Surgeries: campaign to help surgeries threatened with closure under the new GP contract.

RCGP Put Patients First Campaign.

BMA Your GP Cares

The Doctor will Skype you now. A few words of caution about not seeing the patient face to face.

Three papers I use to teach trainee GPs about phone consultations:

http://qualitysafety.bmj.com/content/23/5/398.short?rss=1

http://qir.bmj.com/content/2/1/u202013.w1227.full

http://pmj.bmj.com/content/85/1008/560.full.pdf

 

 

 

 

 

Lessons from “the other side”: teaching and learning from doctors’ illness narratives

An abridged version was published on the British Medical Journal website here and the full version is below.

I am happy to teach medical students, doctors and educators – I am teaching in london this week and next. For a public discussion I am presenting at Critical Voices on July 5th with artist Emma Barnard on the theme of how do we know how patients feel and why does it matter?

Contexts

 

Doctors have written about their experiences as patients for years in the hope that other doctors might learn something from what they have been through. They are motivated by the often-shocking realisation that medical education and clinical practice have prepared them so poorly. They are keen to explain what it is like to be a patient, the particular problems that doctors have coping with illness and the health risks associated with their profession1-3. Their continued efforts and the consistent, recurring themes suggest that we as educators are failing to honor their experiences and share their lessons. It is recommended4 that medical students and trainees are taught about patient experiences and health problems among doctors and I propose that reflective engagement with the narratives of doctor-patients is an effective way of achieving these aims.

 

Methods

 

I read books, professional and lay articles, and blogs written by doctors who were patients and others who wrote about doctors’ experience of illness. I summarised my findings online in a blog5 and used quotes from doctor-patients to make up slides6 for a lecture, which I have given to medical students and postgraduate trainee GPs. I have run reflective, discussion sessions with each group after the lectures.

 

Observations

 

Four major themes arose from my reading: the loss of professional identity, shame and stigma, the need to be seen as a person and poor standards of care. There was little difference in the emphasis between recent and older narratives. In the reflective sessions, students shared their personal experiences of illness and were particularly interested in issues around being a doctor and a patient. Here I discuss the literature, the distinguishing features of the doctor as patient, my experience of teaching and suggestions for further use in medical education.

 

 

Why do we need doctors to tell us what it is like to be a patient?

 

One strength of doctors’ narratives is that what readers are expected to learn is usually stated and almost always implied, for example they should introduce themselves, listen to their patients, respect privacy, and remember their patients are afraid or lonely and so on. Other, more complex medical narratives require quite demanding skills of literary interpretation and criticism7,8,9 that students and teachers may not have. Professional identity is particularly strong in doctors and medical students10, and perhaps more than their non-medical peers they assimilate this into their personal identity. Doctors’ illness narratives therefore have a particular power because of the inescapable sense that if it happened to ‘one of us, it could also happen to me’11. Trainee doctors are sensitive to criticism like the rest of us and most doctors’ illness narratives show appreciation of this. For example, when a sick doctor complains that their doctor did not make time to talk to them, they do so with the knowledge and understanding that their doctor may be tired and busy and have other sick patients to see to. Patient narratives might be too easily dismissed if they fail or refuse to show sensitivity or understanding of the pressures that doctors are under.

 

Doctors, who know by virtue of personal experience what it is like to be a patient, also have a special role as ‘wounded educators’ able to teach from first-hand experience about being a doctor and a patient. In medicine and theology a ‘wounded healer’ is one who has healing powers by virtue of their experience of illness or suffering and in traditional cultures this was understood to be so important that training or initiation rites often involved deliberate injury or poisoning12-15.

 

There are risks in using doctors’ narratives if patients’ narratives are excluded. Either type can pre-empt critical reading or alternative interpretations because it is hard to criticize a book written by someone who is seriously suffering16,17, in part because expectations that medical students demonstrate empathy can lead them to take a non-judgemental position. This is made additionally difficult18,19 when the author has the authority of a more experienced doctor because students may feel they lack both experience and expertise.

 

The experiences of doctors, who have the all the other advantages of socioeconomic status, clearly may not be typical of patients who are poor, very young or old, illiterate or immigrants, with the risk that these important perspectives are less understood. There are risks20,21 that medical students may give greater credence to their professional elders as the source of medical education, even though patients are beginning to be seen as educators, rather than solely as educational material.

 

How we treat patients

 

Many doctors are driven to describe their experiences as patients because they are concerned about the way they were treated and the way they themselves treated patients before they became patients. Dr Kay McKall22, a GP who suffered with bipolar disorder wrote for the British Medical Journal in 2001,

 

“I’ve become sensitive to mistakes that other doctors make when managing me, and I have translated those mistakes into corrections in how I myself manage people with depression. The point of this article is to share these with you.”

 

Dr Kate Granger23,a young doctor with metastatic sarcoma wrote her book, ‘The Other Side’ to help health professionals,

 

‘to be better able to understand exactly what being the patient is really like and how their behaviours, no matter how small can impact massively on the people they look after.’

 

For a long time, doctors as patients have been concerned by how poorly doctors give bad news. In 1952 Professor Henry Sigerist1 (page 8) wrote,

 

“medical colleagues were incredibly secretive … I was never told results, only general answers, not the facts and figures I wanted to know. The result of this secrecy was that for a number of years I never again consulted a doctor.”

 

Things were little better thirty years later, when Campbell Moreland24, a 28 year old doctor with testicular cancer was told that his chest X-ray, showing metastases, was normal,  “ My trust … was irreversibly damaged.” In 2009, Professior Keiran Sweeney25, found out he had lung cancer by reading his discharge summary at home. He is in tears as he describes it in an interview online26.

 

Loss of identity.

 

It is generally acknowledged that doctors make bad patients. One reason is our professional identity which, in contrast to traditional healers, (re)enforces the divide between us, the healthy doctors, and them, our sick patients. Writing about doctors who were patients, Klitzman3(location 151) notes, in common with many others,

 

“Often, only the experience of becoming seriously ill finally compels them to change their thinking, and see themselves and their work more broadly, and from a different vantage point to realize how their prior professional view is just one of several possible perspectives.”

 

Rebecca Lawrence27, a psychiatrist describing her experience of psychotic depression wrote,

 

“I thought my training as a psychiatrist would help, but it was quite the opposite. The experience forced me to cross the border from provider to patient, and taught me how much I did not know. When I read a textbook description of psychotic depression, my diagnosis, I can’t marry it with how I feel. I do feel low, but also agitated and frightened, and simply very ill. I have always felt like two people – the psychiatrist and the psychiatric patient – and it is very difficult when the overlap.”

 

Chronic illness is associated with loneliness and isolation14,28 and doctors who are unable to work because of illness feel this acutely if they can no longer associate with their peers.

 

It is not only professional boundaries that separate doctors from patients but also our perceived attitudes to illness. In a qualitative study of GP attitudes to their own health29, one doctor is quoted, “we think we’re superhuman and that we don’t get ill, or if we do, we can cope with it.” Doctors’ belief that they can cope better than their patients is sometimes expressed as a refusal to ‘give in’ to illness. The same study29 summed up GP attitudes by means of an ‘informal shadow contract’ which included working through illness, ignoring symptoms of distress and expecting their colleagues to do the same.

 

Not ‘giving in’ is an important part of the way doctors think about and judge not only ourselves but also our colleagues and, one fears, others who are sick. Susan Sontag30, a writer and philosopher who suffered from breast cancer was particularly perceptive about difficulties accepting illness,

‘[it is] not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation’.

 

Shame and Stigma

 

The divide and the associated fantasies are nowhere stronger than in mental health and many of the doctor-patient narratives and related articles I found22,31-33 were about mental illnesses. Doctors have the same rates of depression, schizophrenia and bipolar disorder as their patients but are much more likely than their patients to commit suicide; female doctors are two and a half times more likely than their non-medical counterparts33(p.2). The Australian Beyond Blue study34 last year showed that one-in-five medical students and one-in-ten doctors had suicidal thoughts in the past year, compared with one in 45 people in the wider community. Only two weeks before I gave this lecture about doctor-patients to 4th year medical students at Guy’s and St Thomas’ hospital, one of their year had committed suicide.

 

The following description32 by a psychiatrist with bipolar disorder was typical of many doctor-patients,

 

“I had become a psychiatric patient and am embarrassed to say the stigma made me feel physically sick. I felt ashamed of being “weak” and hated the idea that personal information and “failings” were going to be kept on an NHS database. As a psychiatrist it is deplorable that I had such negative cognitions about mental illness. I can put some of it down to my depressed thinking at the time, but not all of it. Despite the Royal College of Psychiatrists anti-stigma campaign and some eminent psychiatrists and celebrities being candid about their illnesses- stigma is alive and well.”

 

Feelings of shame and stigma applies not only to mental illnesses but to a wide range of illnesses, especially when they stop the doctor working35-37.  Feelings are imposed internally and externally, as discovered by a GP38 recovering from breast cancer,

“the shocking hostility that some healthcare professionals display towards vulnerable colleagues did not manifest itself until I went back to work.”

 

Anya de Longh39 was forced to give up her medical studies because of a rare and severe neurological disease. In her blog she wrote about her shame when she realized that some of her symptoms might be psychosomatic,

 

“I fear about being so open about the psychological aspects of my illness because the stigma I apply to myself is likely to be applied by others. Writing this and being so open about the conflicting emotions that it entails has made me question my own sanity on more than one occasion!”

 

Doctor-patients fear being judged and stigmatized40 so tend to suffer in silence and carry on in a profession that prides itself on stoicism and bravado.

Sometimes it is a more-straightforward denial that stops us seeking care, as explained by Kay McKall22, a GP with bipolar-disorder,

“Don’t assume depressed doctors know that they’re sick. The view is quite different from this side of the sanity divide. Chances are that we think that we are only stressed by work, and are distressed by our perceived inability to cope.”

 

Shame nearly led to my death as a junior doctor, because I was ashamed at my inability to diagnose myself, and I feared humiliation more than death:

I had less than a month to go before the end of my second hospital job after qualification in 1996. I had been working as a surgical house officer for 5 months, and had taken off a weeks holiday to go walking in Scotland. I caught the train to Glasgow and the whole journey felt nauseous and feverish. When I arrived I met a friend and he could see I looked unwell. I joked that it was probably psychosomatic or Munchausen’s disease, because I imagined I might have appendicitis, one of the commonest conditions I dealt with as a junior surgeon. My stomach grumbled and I sweated uncomfortably for a few hours before catching the train on to Fort William. I prodded my stomach trying to elicit the clinical signs of appendicitis – rebound tenderness or guarding overMcBurney’s point – without success.

At Fort William I figured that if I really had appendicitis I would be in far more pain, so I changed my working diagnosis to gastroenteritis and set off up the glen of Nevis. I made slow progress due to hopeless map-reading skills as much as deteriorating health, but eventually found a bothy before nightfall. Unfortunately a group of school children occupied it and I had to pitch my tent outside. I spent the night pouring with sweat and shivering with fevers, whilst insects feasted on my naked torso that hung outside the tent because the heat I was generating inside was unbearable. The following morning I felt worse than ever and I decided that I must have appendicitis. I asked the teacher supervising the group if I could use his phone -in those days a mobile phone weighed as much as a brick, had a battery-life of minutes, and cost a small fortune to use. He told me that he could only use it for emergencies for his group. I was in no state to argue, but in part I didn’t want to push it because of the nagging doubt that I might be wrong about my diagnosis. There was a rainbow in the sky before I left, and in the visitors book I wrote, that if I should die, then I’d like my friends and family to know that one of the last things I saw was a a beautiful rainbow.

It took me all day to walk back to Fort William even without getting lost. The last couple of miles into town were along a road. I was so tired and sick I really didn’t think I could make it, so I lay down in the road hoping someone would stop and pick me up. One car drove past, the driver swearing at me to get out of the fucking road, so I got up and staggered all the way to Fort William Hospital. I walked up to the main doors and stopped. I prodded my stomach again … and again. What if it wasn’t appendicitis? I could imagine the surgeon inside examining me sceptically, asking me where I trained and worked, and then asking me to list the signs and symptoms if appendicitis. I began to panic, I had come all this way, but I couldn’t go in to the hospital. Instead I turned around and headed into town to find a phone-box so that I could call a friend. I burst into tears as soon as Becky answered the phone and I blubbed my story. “What on earth are you waiting for? Go back to the hospital, of course it’s ok!” The relief was enormous, I went straight back and into the hospital. The surgeon couldn’t have been kinder, though when he told me that he thought I had a retro-peritoneal abscess and the last time they tried to treat one surgically they had ended up removing half the patient’s colon and this left them with a colostomy (or at least that’s how I remember it) I burst into tears again. Luckily for me, after 10 days of intravenous antibiotics and fluids I recovered without surgery.

Medical education has traditionally involved large amounts of shame and humiliation, with public interrogations of students on ward rounds in front of patients and peers. The fear of being unable to answer is so overwhelming that I was more afraid of mistaking something benign, like gastroenteritis for something potentially life threatening, with apparently classic signs and symptoms, like appendicitis, that I couldn’t present myself to hospital.

Being treated as a person

 

Complaints that doctors fail to see the person in the patient go back to 192741 and continue to the present day42. The introduction to a book1 (p.xiv) published in 1952 containing short essays by doctors with conditions as varied as heart disease and tuberculosis concluded,

“The first need … is the recognition … that every disease is psychosomatic, that is, that it effects both body and soul.”

 

Concerns that the personal aspects of care are neglected have been a consistent feature of doctors’ reports ‘from the other side’. It is worth noting that most of the doctors who have written or been interviewed about their experiences as patients have suffered either mental illnesses or cancer and some of the best known accounts are from patients with terminal cancer. Fewer have had acute conditions or other chronic diseases suggesting that the unmet need to be treated ‘as a person’ may be have been a reason for writing about their experiences.

 

One time medical student and now full-time patient, Anya De Longh43, who teaches medical students about patient experiences, described the contrast between being a medical student and a patient in an outpatient clinic,

 

“In my first rotation, orthopaedics and rheumatology, I lost track within the first week of how many outpatient appointments I sat in on. I didn’t really think anything of them – they are just another 15 minute slot of time filled with learning in a very busy day. As a patient, my perspective couldn’t be more different. I have one appointment with my consultant a year, and spend weeks planning and preparing, then a month recovering emotionally.”

 

Time spent with patients was considered very important to many doctor-patients. Many doctors themselves would like more time to spend with their patients, but feel that the pressure of their work and administrative burdens are barriers44. Doctor-patients often wanted to stress that it ought not to be an excuse, as Kate Granger45 explained,

 

“If being ill has taught me anything about being a doctor it is the importance of seeing a patient as a person and not merely a condition or disease sat in a hospital bed. It is amazing what you learn about people if you just ask. I have looked after a world record-breaking knitter, an Olympic cyclist and a lady who had eleven children in the last few months. The disease focused clinicians may see these facts as irrelevant, but I think they are central to understanding the person, how their pathology impacts on them and why they are special to their family.”

 

In my experience, medical students rarely ever fail to introduce themselves to patients, but once they become infected with the culture of working life, they (we) slip into bad habits. Doctors as patients were struck by the lack of common courtesy they experienced. Kate Granger has started a campaign46,47 that has rapidly gained massive support from grassroots healthcare workers to NHS England called, #hellomynameis to get healthcare professionals to start introducing ourselves again.

 

 

Mistakes and magic.

 

Most mistakes in health care are not noticed by patients. When interviewed about his book about doctors who were patients, Albert Klitzman48 said,

“[doctors as patients] also became more aware of how many mistakes are made, like the wrong dose of medication. They were astonished by that.”

My own experience as a patient and a relative of sick family members has made me acutely aware of how frequently mistakes are made. Other doctors including Kate Granger23 emphasised their distress when waiting for results,

 

“I am frightened and it feels as though nobody is talking to me. I know my MRI report is available, but again no-one has taken the time to discuss this with me so I know this must be bad news. I am laid in a hospital bed sobbing and scared, about at the most vulnerable a patient could be.”

 

Klitzman3 noted that doctors with HIV got results back to their patients, ‘with added urgency’.

 

“Doctors as patients also became more aware of the limits of care. Doctors interviewed about end of life care49 chose less intervention than patients and less than they recommended for their patients.Doctors with serious illnesses, even Anna Donald50 an exceptional academic in the field of evidence-based medicine, chose to use massage, meditation and alternative diets.Klitzman3 (location 3581) was surprised by the ‘degree to which “magic” and irrationality persisted in the lives of these scientifically trained doctors”.

 

Teaching and learning.

 

Doctors who have been patients and experienced ‘the other side’ often feel compelled to report back, and what they have been telling us has been remarkably consistent over the years. Their powerful accounts include lessons which can help us better understand what patients go through and the difficulties doctors have coming to terms with their own health problems. Little has been made of this in medical education and so I have presented my findings on three occasions to 2nd, 4th and final year medical students and GP VTS trainees in the form of a short lecture with quotations from doctor-patients, followed by small group discussions. In the groups the students choose themes they wish to discuss, such as professional identity, stigma, courtesy or medical errors. On each occasion there were some trainees for whom the presentation had particular resonance, and for some of those it was very supportive and for others quite upsetting. I was grateful for the support of the student welfare service at Guys and St Thomas’ and the Tower Hamlets VTS course organisers for their expert facilitation of the small groups.

 

Future prospects.

 

In addition to the subjects outlined about, this work can be used to help doctors develop the reflective skills and personal insight necessary for them to better understand their own predispositions to illness. It can also be an important component of pastoral care, helping students and doctors about how to care for each other and tackle shame and stigma in the profession.

 

GP Dr Liam Farrell, who wrote about his experience of, and recovery from opiate addiction makes this point very powerfully51,

 

“when you are faced so starkly with your own vulnerability, it does make you understand patients so much better … We are frail, we are human — bad things can happen to us, just like anybody else. I think we have to be aware of our own mortality and our own frailty as well, and not be ashamed to look for help if we need it, and also to watch out for each other – not in a ‘big brother’ kind of way — but I think we have to look out for each other’s health.”

This essay is dedicated to Kate Granger.

References.

  1. Pinner M, Miller B F (eds.) When Doctors Are Patients. W.W. Norton and Company inc. New York 1952.
  2. Jones P (ed) Doctors as Patients Radcliffe Publishing. 2005
  3. Klitzman R. When Doctors Become Patients. Oxford University Press; 1 2007
  4. Field R. Haslam D. Do you have your own doctor, doctor? Tackling barriers to health care. Br J Gen Pract. 2008 July 1; 58(552): 462-464
  5. Tomlinson J. Doctors as Patients: A Better NHS blog: http://abetternhs.wordpress.com/2014/01/27/dr-patients/ (accessed 14 March 2014)
  6. Tomlinson J. Lecture slides online: A Better NHS blog. http://abetternhs.wordpress.com/?attachment_id=4007 (accessed 14 March 2014)
  7. Columbia University Program in Narrative Medicine, mission statement. http://www.narrativemedicine.org/mission.html (accessed 10 Mar 2014)
  8. Jurecic A. Illness as Narrative. University of Pittsburgh Press 2013
  9. Greenhalgh T. Narrative Based Medicine in an Evidence Based World. BMJ 1999;318;323. 1
  10. Sinclair S. Making Doctors. An institutional apprenticeship. Berg Publishers. 1997
  11. Carson A. That’s another story: narrative methods and ethical practice. J Med Ethics 2001;27:198-202
  12. Sigerist H. A History of Medicine. Primitive and Archaic Medicine Oxford University Press 1951
  13. Sigerist H. A History of Medicine. Early Greek, Hindu and Persian Medicine Oxford University Press 1961
  14. Wessely A. Gerada C. When doctors need treatment: an anthropological approach to why doctors make bad patients. BMJ Careers 12 Nov 2013
  15. Benziman G. Kannai R. et al. The Wounded Healer as Cultural Archetype. Comparative Literature and Culture 14.1 (2012)
  16. Batt-Rawden SA et al. Teaching empathy to medical students: an updated, systematic review. Acad Med. 2013 Aug;88(8):1171-7
  17. Tomlinson J. Doctors and Empathy A Better NHS blog. (accessed 24 March 2014)
  18. Pattison S. Dickinson D. et al. Do case studies mislead about the nature of reality? J Med Ethics. 1999 February; 25(1): 42-46.
  19. Higgs R. Do studies of the nature of cases mislead about the nature of reality? A response to Pattison et al. J Med Ethics. 1999 February; 25(1): 47-50
  20. Lauckner H. Doucet S. Patients as educators: the challenges and benefits of sharing experiences with students. Medical Education. Vol. 46(10):992-1000
  21. Wykurz G. Kelly D. Developing the role of patients as teachers: literature review. BMJ 2002;325:818
  22. McKall K. An Insider’s Guide to Depression. BMJ 2001;323:1011.1
  23. Granger K. The Other Side. 2012
  24. Moreland C. Teratoma of the Testis. The Lancet – 24 July 1982 ( Vol. 320, Issue 8291, Pages 203-205 )
  25. Sweeney K. A Patient’s Journey: Mesothelioma. BMJ 2009;339:b2862
  26. Kieran Sweeney interview. http://youtu.be/3TignNvHNx4 (accessed 14 March 2014)
  27. Lawrence R. Psychotic Depression. BMJ 2012;345;e6994
  28. Loneliness and Isolation Evidence Review for Health Professionals. Age UK. 2010
  29. Thompson W. Cupples M. et al. Challenge of culture, conscience nd contract to general pracitioners’ care of their own health: qualitative study. BMJ 2001;323:728
  30. Sontag S. Illness as Metaphor and AIDS and its Metaphors. Penguin Books 1983
  31. Lawrence R. A Patient’s Journey. Psychotic Depression. BMJ 2012;345:e6994
  32. Polkinghorn C. Doctors go mad too. Royal College of Psychiatrists http://www.rcpsych.ac.uk/pdf/Doctors%20Go%20Mad%20Too.pdf (accessed 14 March 2014)
  33. Shooter M. Jones P. Doctors as Patients. Radcliffe Publishing Ltd 2005
  34. Beyond Blue launches world-first doctors mental health survey results. http://www.beyondblue.org.au/about-us/news/news/2013/10/07/beyondblue-launches-world-first-doctors-mental-health-survey-results (Accessed 13 March 2014)
  35. Henderson M. Brooks S. Shame! Self stigmatisation as obstacle to sick doctors returning to work. A qualitative study. BMJ Open 2012;2:e001776
  36. Kay M. Mitchell G. Doctors as patients: a systematic review of doctors’ health access and the barriers they experience. Br J Gen Pract. 2008 July 1; 58(552): 501-508
  37. Garelick A. Doctors’ health: stigma and the professional discomfort in seeking help. The psychiatric bulletin 2012;36:81-84
  38. Anon. Cancer Journey. Bullet Proof Cardie. Blog. http://bulletproofcardie.wordpress.com/2013/11/04/cancer-journey/
  39. De Longh. Getting my head around functional neurological symptoms. The Patient Patient Blog. http://thepatientpatient2011.blogspot.co.uk/2014/01/getting-my-head-around-functional.html
  40. Chapple A. Ziebland S. et al. Stigma, shame and blame experienced by patients with lung cancer; qualitative study. BMJ 2004;328:1470
  41. Peabody F. Care of the Patient. JAMA Vol. 88, pp. 877-882, Mar.19,1927
  42. Jiwa N. A Hungry Patient is a Grumpy Patient. Bulletin of the Royal College of Surgeons of England. Volume 96, Number 3, March 2014, pp.78-79(2)
  43. De Longh A. About the Patient Patient. The Patient Patient blog: http://thepatientpatient2011.blogspot.co.uk/p/about-patient-patient.html
  44. Swinglehust D. Greenhalgh T. et al. Computer templates in chronic disease management: ethnographic case study in general practice. BMJ Open 2012;2:e001754
  45. Granger K. Painting the Picture. Dr Kate Granger Blog http://drkategranger.wordpress.com/2013/08/04/painting-the-picture/
  46. Granger K. Healthcare staff must properly introduce themselves. BMJ 2013; 347
  47. Campaigning doctor to speak at Health and Care Innovation Expo 2014 http://www.england.nhs.uk/2014/01/22/kate-granger-expo-2014/(accessed 14 March 2014)
  48. When Doctors Become Patients. New York Times. http://well.blogs.nytimes.com/2008/02/08/when-doctors-become-patients/?_php=true&_type=blogs&_r=0 (accessed 10 March 2014)
  49. Murray K. Doctors really do die differently. Zocalo Public Square. http://www.zocalopublicsquare.org/2012/07/23/doctors-really-do-die-differently/ideas/nexus/ (accessed 14 March 2014)
  50. Donald A. From the other side. BMJ Blog http://blogs.bmj.com/bmj/category/from-the-other-side/ (accessed March 14 2014)
  51. Farrell L. The Professional Path to Recovery. Irish Medical Times http://www.imt.ie/features-opinion/2013/07/the-professional-path-to-recovery.html (accessed 14 March 2014)

 

 

 

 

 

The only normal person I know.

“Oh, no, not again”. I looked at the email form Pentonville prison asking me for Keith’s medical history and list of medications. I filled it in: Methadone for heroin substitution, Diazepam – also for addiction and chronic anxiety, Citalopram for depression. He was in and out of prison pretty frequently for fighting or shoplifting, so I guessed I’d be seeing him out again soon.

The next letter was to let me know that Dawn hadn’t attended her hospital appointment. They, ‘assumed she no longer wanted to be seen’, and so had discharged her from their clinic. “Please don’t hesitate to refer her again if you think she needs to be seen”. The language annoys me intensely. Nobody from hospitals ever phones patients to find out why they don’t attend. One study has done exactly that and found that half the patients who didn’t attend felt too ill to come in. Other patients never receive their appointment or are too chaotic and disorganised, some make a choice that other things like caring for relatives or hanging on to their job, are more important than their health. The reason patients who do not attend are discharged is partly to reduce the waiting times for others but also because hospitals get paid more for a new referral than a follow up appointment. But can I blame them when waiting times are increasing, tariffs are being slashed and so many hospitals are in debt?

Incidentally, I’m going through letters because Dawn hasn’t turned up for a double appointment she booked with me. I tried to leave a message on her phone, but I suspect that she’s run out of credit again. I had wanted to have enough time to talk to her about her recent hospital admission with septiciaemia – a complication of her dreadfully controlled diabetes. She is only 40 years old but is already on dialysis because of the damage caused by the diabetes to her kidneys and can barely see because of the damage to her eyes. I don’t expect her to survive the year, but I cannot give up trying.

The next letter is asking me to sign a petition saying that charging patients who fail to attend GP appointments will harm patients. With what is going through my mind I cannot ignore it, so I sign it. It’s little surprise though that my colleagues are thinking the unthinkable, with over 80% of GPs saying they don’t have enough resources to provide the access and quality that patients need. We cannot continue to do more with less.

The next letter is handwritten on a scrap of paper from Brian asking for something to help him sleep. I haven’t seen him for almost a year. A few years ago I managed to help him stop drinking. He had been an alcoholic for about 20 years and would stagger into the surgery with a can of lager and start arguing with the receptionists. I used to have to call him in to my room as soon as he arrived and escort him back outside so that he wouldn’t upset the other patients. About a week after he stopped drinking he stopped going outside and hasn’t left his flat since. It was only by getting almost blind drunk that he could summon up the courage to face the world. Nothing that I could do, with the help of psychiatrists and psychologists, could get him out. I was shocked when I last saw him. He had lost a lot of weight, his hands were heavily nicotine stained and his voice was so hoarse it was hard to discern his words. His skin was covered with sores from not washing and there was the unmistakeable sickly sweet almondy smell of lice. His flat was strewn with empty cans, over-flowing ashtrays and fast-food waste bought in by a couple of his old drinking buddies. There was no point phoning him – he didn’t have a phone. I resolved to go round to see him after surgery.

The next letter – I was making good use of the unexpected gap in the middle of my surgery – was from the local A&E department telling me that Selina had attended after taking an overdose. It was her tenth A&E attendance this year and it’s only May. The summary was very brief, “overdose of antidepressants after argument with boyfriend, observed in department, self-discharged against medical advice, GP to follow up”. We’re being told that  have to stop patients like Selina going to A&E – I wonder if they realise that we see her at least twice for every A&E attendance, that her brother committed suicide last year and another brother is in prison. Compared to them I think she’s doing OK. I’ve run out of ideas to stop her going to A&E.

The next letter was also from A&E. Nicola had been there with Danielle, her 18 month daughter, again the summary was brief, “cough and runny nose, slight fever for 7 days: on examination: Temp 36.9, chest clear, child happy and active, ears and throat not inflamed. Diagnosis: common cold. GP to follow up.” There was nothing about Nicola’s frequent panic attacks, a lot worse recently after a one-night stand with her violent ex-partner led to him trying to move back in with her. I had seen her with Danielle only a few hours before they went to A&E – I wondered if they had gone there because it was somewhere safe. I added her to a long list of patients to call. My patients aren’t surprised to get a call after 8pm these days.

The next letter was from the district nurses asking me to see Ray because they were worried that he was becoming depressed and not eating. Ray is 87, he is very breathless because of COPD and hasn’t been out for years. He’s also very lonely and isolated. I visit him 3 or 4 times a year, and other than a carer and the district nurses I’ve been his only social contact for the last decade. He’s never been interested in a befriending service or lunch clubs, insisting that he prefers his own company. I’ve little doubt that he was happier when he was in prison – where he spent 40 years before being released shortly after his 75th birthday. He’s not an easy man to like, even now.

Ray was in prison for child sexual abuse. All of the patients I described before Ray were abused as children. An enormous part of my work as a GP, and I have little doubt, a significant and often unrecognised part of the work of A&E, mental health and paediatric services in particular is the care of adults who were abused as children. I doubt that any part of the NHS is unaffected. The damage is lifelong and extends through generations. The anger, anxiety and self-loathing that victims feel creates huge challenges for healthcare professionals who are torn between the deepest compassion and the most intense frustration.

The only thing that I have found to be consistently helpful is continuity of care. For people who have never been able to trust others because of what happened in childhood, a long-term relationship with a stable adult who knows them is literally life-saving. As many of my patients have told me, “Doc, you’re the only normal person I know”

This post is dedicated to all the patients who can identify themselves in any way. It’s based on 14 years of general practice and nearly 20 years working as a Doctor. All the descriptions are intended to be authentic, but to represent no single person.
Jonathon

Joshua Children’s Foundation for victims of child sexual abuse.

GPs say “no” to charging patients but warned that services were being stretched so much that services were being put at risk. BBC news.

RCGP Put Patients First Campaign.

BMA Your GP Cares

 

 

 

 

Medicine and social justice? plus ça change …

“Medicine is a social science, and politics is nothing else but medicine on a large scale. Medicine, as a social science, as the science of human beings, has the obligation to point out problems and to attempt their theoretical solution: the politician, the practical anthropologist, must find the means for their actual solution… The physicians are the natural attorneys of the poor, and social problems fall to a large extent within their jurisdiction.”

Rudolf Virchow 1848

“… it is useless to tell him that what he or his sick child needs is not medicine, but more leisure, better clothes, better food, and a better drained and ventilated house. It is kinder to give him a bottle of something … and tell him to come again … if it does not cure him. When you have done that over and over again every day for a week, how much scientific conscience have you left?”

Bernard Shaw. Preface to A Doctor’s Dilemma 1909

“The most common criticism made at present by older practitioners is that young graduates have been taught a great deal about the mechanism of disease, but very little about the practice of medicine—or, to put it more bluntly, they are too “scientific” and do not know how to take care of patients.”

Francis W. Peabody, The Care of the Patient. 1925

“… large sections of the population have no medical care at all or certainly not enough. The technology of medicine has outrun its sociology. Many health problems have been solved medically but remain socially untouched, thus defeating the progress and wasting the grians of medical science.”

Henry Sigerist 1941

“We have all been willing participants in allowing the creation of a myth, because it seems to serve our interests to believe that illness can be vanquished and death postponed until further notice. … inequalities, or iniquities, cannot be shrugged off, yet successive governments seem oblivious to them. The extent of the re-examination and reorientation of values called for is breathtaking. But so also is the extent of the human wastage and misery which we tolerate now with hardly a thought as to whether things might be otherwise …”

Ian Kennedy Reith Lectures 1980

“The current culture of medicine does not incorporate social issues as central to its practice; moreover, when such a perspective is incorporated into medical education or residency training, issues including health care disparities, culturally and linguistically accessible care, homelessness, poverty and immigration are usually afforded a one-hour lecture block at the end of a long day of physiology and pathology or situated in the middle of rigorous hospital-based clinical responsibilities. This not only reinforces a perception of social justice issues as an “add-on” to the central curriculum but also fails to engage trainees in effective ways.”

Sayatani Dasgupta: Medical Education for Social Justice: Paulo Freire Revisited 2006

“A strong case is made that the present content, organisation, and delivery of health professionals’ education have failed to serve the needs and interests of patients and populations. To take one example: there is a gross mismatch between the supply and demand of doctors and nurses, with massive shortfalls where health professionals are needed most.”

Richard Horton, A New Epoch for Health Professionals’ Education. The Lancet 2010

“There is a social gradient in health – the lower a person’s social position, the worse his or her health. Economic growth is not the most important measure of our country’s success. Action on health inequalities requires … the fair distribution of health, well-being and sustainability … “

The Marmot Review 2010

“I observe this again and again that I cannot address medical issues as I have to deal with the patient’s agenda first, which is getting money to feed and heat.”

General Practitioners at the deep end.  Glasgow University 2013

 

I am grateful for the first comment and link to Bastian Cole’s defence of a medical general practitioner  which resonates strongly with many, if not most GPs.

To clarify my position,

Whilst I strongly support the holistic practitioner whose practice is attentive to each patient’s narrative history and individual circumstances,

I strongly believe that the NHS – like every so-called-healthcare-service is called upon to cope with the consequences of political decisions that create inequalities and dis-empower people, that fails in a duty to provide adequate education, employment, housing and financial security and then blames people for their illnesses and berates them for being a burden on hospitals and GP surgeries.

The burden on the NHS – as I intended to highlight with the quotes above – is the failure of those in power to adequately share the benefits that power bestows and tackle the social determinants of health so that fewer people are dependent on the social and emotional support that the NHS is increasingly called upon to provide.

 

Further reading:

Medical Advocacy

A Perfect Storm: Welfare meets Healthcare

 

4 Problems

Published first on BMJ blogs

I had only three patients left to see at the end of my morning surgery. It was 12.30. I had started at 8am, taking urgent phone-calls for an hour before starting face to face appointments. It had been a typically challenging morning. Many patients had complicated mixtures of physical, mental and social problems which is typical of all general practice, especially in deprived areas like Hackney. As a result I was running about half an hour behind and feeling pretty harried.

My next patient was a young, healthy looking, smartly dressed woman, in contrast to my previous patient, an elderly Turkish man with depression and chronic back pain who didn’t speak a word of English and came without an interpreter. The young woman was cheerful and friendly. ‘This shouldn’t take too long’, I thought as I called her in.

“Hello doctor, I won’t take too much of your time” she said, reading my mind. My heart sank.

“I’ve made a list”

My heart sank some more. Any consultation that starts with the promise of brevity is guaranteed to exceed its allotted time. I looked her in the eyes, gestured for her to sit down and smiled with warmth and empathy, and greeted her with the words I use about forty times a day,

“Hello, my name is Jonathon Tomlinson, I’m sorry to keep you waiting, how can I help?”

“Hi Jonathon, I’m Charlotte, I hope you don’t mind, but I’ve got four things I’d like to discuss this morning, they’ll all be quick”

“Of course” I lied, shifting my expression from a smile of greeting to friendly concern, “Can you tell me what they are?”

“Well the first one’s easy, I just need a repeat of my prescription, the second one is my knee, you see it’s been hurting after I go running, after about three or four miles it’s really hard to go on. And the other one is about my irritable bowel, my nutritionist says I need some blood tests and she’s given me a list to give to you.”

As she rumaged in her bag for the list of blood tests, I glanced at the computer. Alerts were flashing up demanding that I asked her about her smoking status and alcohol consumption, checked her weight and blood pressure, screened her for depression and offered her a smear. I scowled at it and turned off the screen so that it couldn’t irritate me any more.

“Here you are” she said helpfully, handing me a list of about a dozen blood tests, few of which I would have recommended myself and a few of which I had no idea if our local lab could even test for. There was no information from the nutritionist – who she had seen privately – about why she thought the tests were necessary. Unlike dieticians, who need a degree, are state-registered and work with us all the time, nutritionists have variable training, are unregulated and don’t work for the NHS. “Thanks”, I said taking the list and putting it on my desk. The symptoms of irritable bowel syndrome vary considerably between different people. For some, it causes severe abdominal cramps, pain and bloating, sudden, unpredictable bouts of diarrhoea with urgency – so that when sufferers need to go, they really need to go. It makes them tired and miserable and in some cases depressed and anxious. I’m very sympathetic. But I cannot justify the time and money involved in arranging the blood tests her nutritionist wants. Unlike the nutritionist, I am responsible for not only the costs, but I will have to justify them to the lab and take responsibility for acting on the results.

It’s a situation I’ve come across before. Previously patients have understood my concerns, but only after spending a long time taking a detailed history of their symptoms and exploring the impact on their life and relationships. Only when they believe that I am as interested in their symptoms, as concerned and as keen to help as their nutritionist, is it possible to broach the subject of why I’m not going to organise the blood tests.

All this is worrying me, mostly because of how long it’s going to take, when I say, “Shall I have a look at your knee?” I gesture to the couch. She had to take off her boots and jeans so that I can examine her knee. I was expecting her to have a common condition called patello-femoral pain syndrome so I was surprised to see that her knee was swollen and warm. After a careful examination and asking several more questions I’m concerned that there is something more serious going on and have to continue to examine the rest of her joints before she gets dressed again. As she gets dressed I explain my concerns and what I think we need to do. I’m concerned about an inflammatory arthritis and think she should have some blood tests and see a rheumatologist. I imagine myself arguing with an invisible health policy wonk who is standing in the corner of the room accusing me of inexcusable paternalism and contempt for patient choice as I recommend that I do the blood test now and refer her directly to our excellent local rheumatologist. I’m in a bad mood.

By now the consultation has gone on for over 15 minutes. In another 15 minutes it will be 1pm and a health visitor will be here to discuss a child-protection case we’re both very worried about. There are two patients left to see. I start to panic. I’m feeling irritable and anxious.

I smile.

“What was the prescription you needed?”

“My pill”

Her review is overdue, so I need to check her blood pressure. I use the 9o seconds it takes to ask her about her smoking and alcohol consumption, but the blood-pressure machine is confused if patients talk when it’s measuring, so I have to do it again. I collect the bottles for the blood tests in silence while the machine beeps happily.

Charlotte asks if I can do the blood tests her nutritionist has requested at the same time as the tests for her arthritis.

I lie.

“I can do some of them, I’m not sure if they’re all available at our local lab”

There are some I don’t want to do, because they’re not necessary.

I feel bad about lying.

I tell her the truth.

“Some of the blood tests your nutritionist has asked for I think are really useful for someone with your symptoms, but some really aren’t and there’s one missing which I think you need.”

“That’s ok,” she says, “I think I trust you more than the nutritionist”

I’m extraordinarily relieved, I want to hug her and tell her she’s made my day.

But I don’t.

I do the blood test. I’ve taken over 20 minutes. It’s gone ten to one. A message on my screen pops up to say the health visitor is here. I start to get anxious again.

“There was one more thing” she says.

I was hoping she might have forgotten. Usually when patients have something serious to discuss, especially if it’s something embarrassing, they save it until last. Quite often they get up to leave, walk to the door, open it, pause, turn around and say, … “I was just wondering about the lump in my breast/ blood in my pee/ sudden loss of vision/ terrible crushing chest pain, etc.”

I can’t let it go.

“What was it?” I ask with gentle concern. I’m feeling benevolent in spite of the time, because of what she said about trusting me more than the nutritionist.

“My brother died last month, he was knocked off his bike and run over. I haven’t been able to sleep and I keep crying all the time, I’m not coping with work and I was wondering if I could have a bit of time off”

“Of course” I say, I feel sick and my heart races as I think about my own son being run over last month.

“I’m so, so sorry. We should meet again though, when we’ve got a bit more time. Can I give you a note for a week and we’ll meet again then?”

Tears are rolling down her cheeks, “Thanks so much, I really appreciate that”

I felt incredibly sad as she left. Not just because I was still imagining what it must be like to have lost her brother, but because nobody in policy – such those behind last week’s report into the future of Primary Care – seems to understand what it is we GPs do all day. The gap between their proposals for more technology and our need for more time and human interaction seem to be getting wider than ever.

I know I don’t have any free appointments in a week. So I arrange to see her 15 minutes before my evening surgery starts. Almost every surgery has extra patients booked before it starts and after it’s supposed to finish.

It’s five to one when I step out into the waiting room. The health visitor looks up and waves. A middle aged man is asking the receptionist when he’s going to be seen. An elderly man has fallen asleep in a wheelchair, his carer has left and promised to come back to collect him at 1pm. He is my next patient. I wheel him into my room. He thinks he might have broken his hip.

He had broken his hip, it took nearly 20 minutes to help him to get from his wheelchair onto the couch, undress him, examine him, dress him again, and arrange for him to go to hospital. When I finished, I found my last patient had left after making a complaint. There was a message from the practice manager asking me to discuss it with her. It’s my third complaint this month.

It was nearly 1.20 when I finished. The health visitor was standing up looking concerned. We have only 10 minutes to discuss the child-protection case.

Patient centred care: Rhetoric and reality

Published first by the excellent Centre for Health and the Public Interest

Patient-centred care is high up the political and policy agendas, with Jeremy Hunt announcing last month,

One year on from Francis, my top priority remains to support you in creating a more patient-centred, compassionate NHS.

The ambition of making the NHS more patient-centered, or  in the case of Andy Burnham, person-centered, is shared by most political and health policy leaders.

Confusions about what patient-centered care really means can produce efforts that are superficial and unconvincing, such as policies, like friends and family tests and treating patients as customers,  promoted by National Director for Patients and Information Tim Kelsey.

An excellent report by the Health Foundation rightly puts relationships at the heart of patient-centered care and makes the important link between the structure of the health service and the possibility of relationships:

relationships in healthcare … do not exist and evolve in isolation but are strongly influenced by the context(s) within which they take place. This includes the structure of the wider health system and the policies governing the interactions  … alongside factors that influence the service user and service provider… e.g. the users social status or access to other support networks.

The structure of the NHS is shifting from a public service in which patients are vulnerable citizens in need of care to a market-place in which patients are consumers, and this is putting patient-centered care at risk.

For patient-centered care to flourish, the NHS has to allow the right kinds of relationships between professionals and patients to develop.  Epstein contrasts transactional relationships, such as Kelsey’s concept of patients as consumers, with interactional relationships, in which the patient is a person:

At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end a transactional approach focuses on knowledge about the patient, information as commodity, negotiation, consent and individual autonomy.

Interactional relationships requiring knowing the patient as a person, and to emphasise this point Starfield suggests that whereas patient-centered care relates to a single encounter, ‘person-focused care’ is based on an accumulated knowledge of a person and their needs in the broader context of their life. In order for knowledge to accumulate, relationships need to develop over time. Explaining what an evidence-based response to Mid Staffs would look like, Greener points out the importance of giving professionals the time and space to provide quality care and working with their intrinsic motivations, rather than adding targets and protocols. MuntheGreenhalgh and many others note the importance of allowing time for narratives, the stories patients tell about their lives, that give their symptoms context and meaning. One meeting is rarely enough, especially when caring for patients with complex or long-term conditions. Getting to know a patient as a person depends on continuity of care, a point repeatedly emphasised by many doctors who have experienced being patients themselves.

Few people who have experienced what it is like to be a patient, especially with a serious, long-term illness would dispute the value of patient -centered care, but proving why it is important is more problematic. The Health Foundation concluded that evidence linking patient-centered care with disease-centered outcomes is mixed and inconclusive. The problem is that patient-centered outcomes are so hard to define. For one thing, in primary care many presenting symptoms remain ill-defined and undiagnosed, but are nevertheless distressing for patients and make up a considerable part of General Practice workload. For another, patients are increasingly suffering from multi-morbidities where two or more medical conditions co-exist and interact, for example cancer and heart-disease, or diabetes and depression. By the age of 65 most of the population have at least 2 morbidities, but young and middle aged people in the most deprived areas have rates of multimorbidity equivalent to those of people 10 to 15 years older in the most affluent areas. Treatments can interact adversely, or simultaneously improve one condition and worsen another.NICE guidelinesShared-Decision Making toolsQoF incentives are all designed for a disease-centered model of care that diverges further from patient-centered care the more complex patients’ problems become. A recent review of new cholesterol and blood pressure guidelines observed,

Many guidelines have a paternalistic tone. The embedded assumption is that it is possible to tell physicians what should be done based on some limited clinical characteristics of the patients—and that the patients’ role in the decision is absent.

Almost certainly we’re not measuring the outcomes that matter to these patients, despite some promising research. I agree with Rowland’s conclusion that, “multimorbidity introduces clinical uncertainty in a way that is unlikely to be resolved by ever more sophisticated guidelines”

So what do we need to make the NHS more patient-centered?

Further reading:

The Importance of Knowing patients

Patients, customers, clients or consumers?

Measuring what really matters. New report from The Health Foundation: http://www.health.org.uk/publications/measuring-what-really-matters

Knowing one another

406px-Francisco_Goya_Self-Portrait_with_Dr_Arrieta_MIA_5214

Goya: Self Portrait with Dr Arrieta

Getting presents from appreciative patients when you leave a practice is lovely, but coming back presents are an unexpected pleasure.

I recently returned to my usual practice after four months spent helping out at a different practice, working for our Out of Hours GP service and finding my feet in an academic post. The welcome home from patients and staff has been exceptionally warm and friendly. Many of my most frail and vulnerable patients, some with only a few months left to live, some with new diagnoses of cancer, most with multiple multi-morbidities (co-existing medical conditions) had arranged to see me, so that my first six sessions were full of familiar faces. I’ve been extraordinarily busy trying to catch up, but these have been some of my most enjoyable days in more than a decade of general practice.

What was so overwhelmingly apparent, was how important it is for doctors and patients with long-term problems to know one-another.

When I first met Dylan he was wrapped in several layers, a woollen jumper over a sweatshirt and a puffy jacket over the top, despite the mild weather. I remembered working as a junior paediatrician in a clinic for children who were failing to thrive, all of whom would be bought in wrapped up to make them look as big as possible. The more layers we had to peel off, the thinner the child was underneath. The list of possible reasons encompasses almost everything from cancer which was fotunately rare to parental neglect which sadly wasn’t. Dylan’s mother, Kim, who I didn’t know, had seen three or four different doctors with Dylan in the weeks before me, and had taken him to A&E several times. “None of you lot are doing anything for him,” she complained angrily, avoiding eye-contact and refusing to sit down. 

It took a few weeks of regular appointments to  diagnose Dylan with Coeliac disease and then begin to gain Kim’s trust. It took a few months to help her engage with a parental support group and to see a psychologist to help with her panic attacks. About a year after we first met, she told me about her husband, Steve, who was due to be released from prison and needed a GP and help with his mental health and drug problems. I didn’t get off to a good start with Steve, the wall of my consulting room still bears the scars from where he slammed the door open knocking a hole in the plaster after I refused to give him a prescription for diazepam. Three years later, I’m still not prescribing diazepam and Steve is relatively stable on a methadone prescription and we meet on friendly terms every month.

Stan comes in to see medical students with me every few weeks. He has end-stage chronic obstructive pulmonary disease, meaning he can barely breathe. He pulls along an old shopping basket on wheels with an oxygen cylinder inside attached to a long hose with plastic prongs at the end that stick up his nose. He insists, to his wife’s frustration, on walking to the surgery even though he has to stop every few steps. “The only time I go outside these days is to come here, and I only come here because it’s Doctor Tomlinson asking”, he tells the medical students. His wife, Maureen suggests it not much of an exaggeration. Last year I diagnosed Maureen with bowel cancer.

Maureen has spent a good deal of her life under the care of gynaecologists and pain specialists with unexplained pelvic pain. An enormous number of scans, surgical procedures, hormonal treatments and analgesic cocktails served only to distract her from a tempestuous marriage with little effect on her pain. When she was diagnosed with cancer she seemed relieved as much as anything. Many, if not most , presenting symptoms in General Practice remain ill-defined and undiagnosed. They are distressing for patients and frustrating for GPs and make up a considerable part of our workload.

This has probably always been the case. More than 60 years ago, the introduction to a book containing 33 autobiographical accounts by doctors of their experiences as patients with illnesses as diverse and serious as heart failure, cancer and tuberculosis, stated,

This collection of case reports can only emphasize again, and, I believe, in a peculiarly urgent and moving way, how essential it is to treat the whole patient, unless we as physicians want our patients to seek relief in pseudo-religious or fraudulent medicine. The first need is not, in my opinion, diagnosis and specific treatment of so-called psychosomatic diseases, but the recognition – which is not new, but so frequently forgotten and ignored – that every disease is psychosomatic, that is, that it affects both body and soul.

I discovered only recently that Kim is Stan and Maureen’s daughter. I found out when I was seeing Stan with my students. I have been teaching medical students how to take a narrative history, how to listen to and listen for the stories patients have to tell, rather than just the stories we want them to tell. Kim, Steve and Dylan all played their role in how Stan was affected by his breathing and how Maureen and Stan are able to deal with life and illnesses.

In an introductory paper to the use of narratives in medical education, Professor Trish Greenhalgh notes that narratives,

offer a method for addressing existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and may even constitute, people’s illnesses.

In contrast to a structured medical history, taking a “narrative history” means allowing a patient to tell their story in their own way, choosing themselves which events are significant, giving context and perspective to the social, spiritual and emotional aspects of their condition,

narrowing the gap between objective assessments of wellbeing in illness and subjective experiences which are varied and diverse; developing a more attuned dialogue between physicians and patients, based on a thick understanding of illness … [and] providing medical staff with a concrete understanding of the impact of the illness on the life-world of the patient.

Another professor of general practice, Barbara Starfield suggests that what GPs strive to provide is, ‘person-focused care’, based on an accumulated knowledge of a person and their needs in the broader context of their life. In order for knowledge to accumulate, relationships need to develop over time. Explaining what an evidence-based response to Mid Staffs would look like, Greener points out the importance of giving professionals the time and space necessary to provide person-focused care and working with their intrinsic motivations to do this, rather than adding targets and protocols. Munthe, Greenhalgh and many others note the importance of allowing time for narratives, the stories patients tell about their lives, that give their symptoms context and meaning. Every interaction matters, but one meeting is rarely enough, especially when caring for patients with complex or long-term conditions. Getting to know a patient as a person therefore depends on continuity of care, a point repeatedly emphasised by many doctors who have experienced being patients themselves.

For this kind of care to flourish, the NHS has to allow and actively encourage these kinds of relationships between professionals and patients to develop. Epstein contrasts transactional relationships in which patients are likened to consumers, favoured by many in the health policy world, with interactional relationships, in which the patient is a person:

At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end a transactional approach focuses on knowledge about the patient, information as commodity, negotiation, consent and individual autonomy.

Leaving my patients for four months and coming back has made me realise more than ever before the importance of long-term caring relationships, of working through difficulties with patients and getting to know one another.

 

 

Moral luck, agent regret and the doctor as drug.

First published on BMJ Blogs
 I was in front, crossing the road with Cedric my two year old son on my shoulders. We stopped on the traffic island in the middle of the road.

There was a screech of rubber, a bump and a crunch and I turned around to see lots of people screaming – a stopped car and a frightened woman stepping out of the driver’s seat. There was nobody lying in the road, no sign of damage. I imagined for a moment that someone had been running across the road, caught a glancing blow and then run off again. People were still shouting and crying,

“There’s a little boy under the car!”

My heart stopped.

Where’s Billy?

I suddenly realised my four year old wasn’t with me.

“There’s a little boy under the car!”

“Oh no! please God, no!, Not Billy … please, no!”

I couldn’t see him, the woman driving the car had got back in and was reversing, I tried to shout to stop her, but I couldn’t make any sounds come out of my mouth.

She was driving her kids to their auntie’s house. They were excitable and laughing in the back of the car, and she glanced back at them in the mirror. Then she saw him, a little boy in a green hoodie, stood right in front of the car, hands outstretched, trying to protect himself, staring at her, terrified. Time stood still. She’ll never forget his face, staring at her, head barely above the bonnet. She stamped on the brakes, her children screamed, she let out a cry, the little boy disappeared under the front of her car. The car stopped, but it was too late. For a moment time stood still, with his face imprinted on her memory, then the screams from outside the car, people hammering on her windows, shouting at her, “You’ve just run over that little boy!” She panicked, got out of the car, got back in and reversed.

Both of us, the driver and I, blamed ourselves for what had happened. I’ve killed my son, I thought, I’ve killed that little boy, she thought.

This week George and Angela came to see me. Both of them, husband and wife, have had breast cancer. “What did we do to deserve this?” they asked, in all seriousness.

There is no getting away from the fact that when terrible things happen, we look for someone to blame, no matter how little control we have. Moral judgement in cases like this is referred to as ‘moral luck’. Very often we blame ourselves. This is ‘agent regret’, but when you think you are to blame for a child’s death, regret is a woefully inadequate word for the depths of remorse, shame and sorrow.

Healthcare professionals are particularly prone to moral luck and agent regret.

“What is the drug you use with patients all the time?” “The doctor is the drug[1]” M. Balint 1952

Professional identity is particularly strong in doctors and medical students[2] [3], and perhaps more than our non-medical peers we assimilate this into our personal identity. With this, comes an enhanced sense of moral responsibility; we cannot avoid thinking that we are morally responsible for what happens to our patients.

This spectrum of moral responsibility is intrinsic to our underlying constitution and moral predispositions. The efforts of lawyers, ethicists and moral philosphers[4] to impose definitions seem far removed from experiences like those described above and our self-imposed moral standards.

It is not only our attachment to our professional identity, but the nature of our work that makes us vulnerable to moral luck and agent regret. For example,

We might judge a doctor who fails to ask a patient about allergies (as we all have done at least once) before administering penicillin more harshly if the patient is allergic and suffers a fatal anaphylactic reaction than if the patient is not allergic and not only suffers no harm, but also recovers from their infection. Our judgement of a doctor whose patient suffers an irritating, but non-fatal allergic reaction might fall somewhere in between. In none of the cases did the doctor ask about allergies, so the only significant difference is in how the patients responded to the drugs.

Intuitively there is something worrying about the idea that moral judgement or moral standing depends on factors outside our control. One immediately obvious problem is that the degrees to which factors are within someone’s control are easily contested. If we take any case of a patient who died while receiving active medical treatment, then the multiple decisions that led to the interventions before their death, described by way of example here[5], could always have been different. Likewise I could have held Billy’s hand when I crossed the road and the driver could have driven more cautiously. To different degrees, depending on a multitude of factors, moral luck and ‘agent regret’ will always come into play.

For philosopher Thomas Nagel4 there are four types of moral luck,

  1.        Resultant Luck: “luck in the way one’s actions and projects turn out.”
  2.       Circumstantial Luck: the luck involved in “the kind of problems and situations one faces”
  3.       Causal Luck: “luck in how one is determined by antecedent circumstances.”
  4.       Constitutive Luck: the luck involved in one’s having the “inclinations, capacities and temperament” that one does. (Nagel, 1993, 60)

Healthcare professionals are vulnerable to ‘resultant luck’ because the way things turn out in medicine can be life or death, or to a lesser degree, in the relief or worsening of our patients’ suffering or disability. We are at risk too, of ‘constitutional luck’ because we are faced with sick patients in pressured situations. Increasingly under-resourced, we are forced to work without sufficient support or rest. Our inclinations, capacities and temperament lie on a spectrum which is determined by our genes and upbringing as much as our training and professionalism. For doctors and other healthcare professionals, moral luck is an unavoidable part of the job.

We are most at risk when we are most emotionally involved with our work, and it is unsurprising therefore that psychiatrists and GPs present to organisations like the Practitioner Health Programme most frequently, needing help with our own ‘agent regret’ which can lead to depression and substance abuse as we try and fail to cope with it or blank it out.

The demands for more compassionate, patient-centred, empathetic care in the aftermath of well publicised cases where this was lacking, like Mid Staffordshire Hospital, pay little or no regard[6] [7]to just how much moral responsibility healthcare workers already feel and what can, or more importantly, cannot be done about it.

If we are to become more empathetic and take greater moral responsibility for our patients, something few people would disagree with, then we must appreciate that how much it affects us and our patients depends to a significant and under-appreciated degree, on luck.

The car reversed and there lying in the road, trembling, crying and terrified was Billy. He had been knocked flat on his back and went right between the wheels. When I asked him later what happened, he said, “It was magic daddy, the car went right over me and I’m not dead”

Further reading

 

[1] Edlund M. The Doctor is a Drug. Psychology Today. http://www.psychologytoday.com/blog/the-power-rest/201103/the-doctor-is-drug (accessed 26th March 2014)

[2] Sinclair S. Making Doctors. An institutional apprenticeship. Berg Publishers. 1997

 

[3] Wessely A. Gerada C. When doctors need treatment: an anthropological approach to why doctors make bad patients. BMJ Careers 12 Nov 2013

 

[4] Moral Luck. Internet Encyclopaedia of Philosophy

 

[5] Berry P. 5 days of escalation creep. Illusions of Autonomy blog. http://illusionsofautonomy.wordpress.com/2013/07/04/5-days-a-tale-of-escalation-creep/ (accessed 26th March 2014)

 

[6] Zulueta P. Compassion in Healthcare. Clinical Ethics December 2013 vol. 8 no.487-90

 

[7] Campling P. The last thing the NHS needs is a compassion pill. BMJ Blogs May 13th 2013

Care dot data

Care dot data was explained to every English household by way of a leaflet delivered with the junk mail. I don’t think I got one, though I haven’t been through my recycling to see if it ended up there, but I have looked at the online leaflet. It explains that your GP is required to upload your electronic coded data to the Health and Social Care Information Centre (HSCIC)

Care.data will extract coded data only. When you visit your GP, certain words are coded when they are added to your electronic record. GPs vary considerably in how much data they code. A significant part of our income is linked to accurate registers for heart disease or cancer, or for numbers of patients who have smoking status recorded, or for blood pressure control under a certain level. Codes enable us to count these up, see how good we are at identifying patients with different conditions and at treating blood pressure, diabetes or other conditions. The things we have to code change frequently and so some GPs try to code absolutely everything, to be on the ‘safe side’, whilst others don’t code enough. The following is an example of a GP consultation. I have written all the information that is coded, usually automatically as it is typed in, in bold:

Harold Smith. Male D.o.B. 14/10/1948. NHS number 4744 4394 3205

Address: 30 Chester House. Hoxton N1 5HL

Ethnicity: white British. Religion: Catholic

Problem: Type 2 diabetes

History: since bereavement hasn’t been taking meds regularly, often misses doses, tired/ tearful.

No previous DKA/ last HbA1c 7.9

Has also been drinking up to bottle of wine at night to help with sleep, would like a few sleeping tabs. Has used them before when she was on ITU last year. No concerns r/e overuse. Discussed risks with alcohol. Prefers not to drink.

Results: Alcohol consumption 69 units/ week

Plan: see other entries/ review at next apt in 2w

Problem: Bereavement.

History: see under T2 DM entry

Problem: Moderate depressive episode

History: 1 month since Evie’s death. Unexpected. Still v. upset. Prefers not to see bereavement counsellor, daughter Sue is around / supportive. No sig. PMH depression/ no suicidal thoughts

Results: PHQ9 18

Prescription: Zopiclone 7.5mg 7 tabs. One to be taken at night prn.

Problem: Essential hypertension

History: see entry under T2DM

Results: BP 140/80

Problem: Tinnitis

History: worse since Evie died. Bilateral. Assoc with hearing loss. Interferes with sleep/ conversation. Would like ref to audiology

Examination: ear canals clear, Webers/Rhinnies symmetrical.

Referral: Audiology

Active medications:

Acute:

Zopiclone 7.5mg. 7 tabs. One to be taken at night prn.

Repeat:

Metformin 500mg. Take 2 tabs bd

Amlodipine 10mg. Take 1 tab od.

Ramipril 5mg. Take 1 tab od.

Atorvastatin 10mg. Take 1 tab at night.

Allergies: Penicillin

Recent results: 12/02/2014

Hb A1c 7.9 (marker of diabetic control)

Cholesterol 3.9

Creatinine 110 (marker of kidney function)

ALP 122 (liver enzyme, measured in patients taking medication to lower cholesterol)

It is important to note that none of the conversations are coded, only words referring to diagnoses, results and medications. Some of the care.data will be fully anonymised so that any details that could link this to a particular person are not included. This will allow us to study disease prevalences, medication use and so on. Some of the care.data will be pseudonomysed by the  HSCIC so that the dataset they intend to release to researchers and public health analysts will have a pseudonymised ID number (to filter all records by that patient), a five year age band rather than a date of birth, and an output area rather than a postcode. This will make it possible to see, for example, how many elderly white men in an a particular area with diabetes are being prescribed Atrovastatin and what affect it is having on cholesterol levels and compare it to different parts of the country or different ethnic groups. In theory, someone could back track and identify you with this data, but it would be pretty difficult and illegal. It is worth noting that in Wales and Scotland they’ve decided that the English method of pseudonymising isn’t sufficiently secure and have opted to do things differently.

But like the vast majority of doctors and researchers, and many patients, I think care.data has great potential. When very large numbers of people are studied, researchers are more likely to spot rare effects or rare conditions. You could study, for example whether different drugs used to treat high blood pressure are better at preventing strokes in men or women of different ages or ethnicities. It can help to monitor the effects of the massive changes and swingeing cuts to the NHS by looking at, for example inequalities in referral rates for physiotherapy or fertility treatment in different parts of the country.

Potential risks.

One of the main risks is that the data is inaccurate. In the example above, Harold has a code for ‘Moderate depressive episode’, but he is not depressed and has no past history of depression. The code will stay in his records unless someone deletes it. The alcohol consumption has also been coded and will stay on his record. It is quite common for results like this to be coded when a patient presents in exceptional circumstances, in a particular context. Unfortunately a code doesn’t come with a context and once the circumstances have changed, the doctor and the patient may know that alcohol is no longer a problem, but not add a new code. In my experience of working in GP surgeries for the last 14 years, every patient with a significant medical history, has erroneous codes. Often they are relatively minor, such as a code for ‘sciatica’ instead of ‘back pain’, but it’s quite common to have a code for ‘angina’ which is due to heart disease, instead of ‘chest pain’, which can be due to anything.

It’s important to understand that GP records are like a notebook or aide-memoire for GPs who might be trying to figure out what to make of their patients’ symptoms. We note down lists of potential diagnoses, different symptoms and possible investigations as we go along. The coding was designed to facilitate payments but not to help us with diagnostic puzzles. To make the coding easier, words are recognised and allocated a code, whether or not they are significant. Many GPs uncode words as they go along, but it can slow things down so others are less fastidious, thinking, not unreasonably that it makes no difference, because they are not treating it as a diagnostic code, for insurance or research purposes, but as a form of note-keeping. When codes are extracted from GP records, they are stripped of context. If coding was designed for insurance or research purposes it wouldn’t work the way it does.

I think that a pre-condition for care.data should be that patients can check their coded data. A tiny minority of GP surgeries already allow this, and it would help improve the accuracy of the records and improve trust. At the same time, this coded data should be available for hospitals to access should you be admitted, saving time and improving safety. Whilst some GPs are worried that anxious patients will be made more anxious by having access to their data, evidence refutes this. In nearly 20 years of working in the NHS in hospitals and general practice, there have been constant complaints that information about medical conditions, medications and allergies cannot be easily shared. Unfortunately care.data doesn’t address this.

Insurance companies.

Hospital data is already being sold to health insurance companies. If you apply for health insurance you have to disclose your present and past medical history and any medications you are taking and your GP has to confirm that the information is correct. It is likely that in the event of care.data being made to insurance companies, it will be significantly more detailed than the information you are required to disclose at present, unless they ask for your entire GP record, which they can do, but only with your signed consent. A lifetime of coded GP data, is clearly much more detailed than the boxes ticked on a form that you fill in yourself. This is very important, especially when you consider the practice of rescission, when an insurance company will retrospectively examine a patient’s medical records to find a reason to cancel the policy. In the example given above, the code for alcohol consumption will be picked up, but the context – contained in the free-text- will not. As a result, the insurance premiums may be increased and any conditions related to excessive alcohol consumption, whether or not they are caused by it, may be excluded.

Effective care depends on doctors and patients being able to trust each-other, especially in general practice where very personal, emotional issues are so often wrapped around other health concerns. If patients are afraid that everything they say will be coded and potentially used against them, trust will very rapidly and perhaps irreparably, be lost.

Where things also get interesting is in the use of care.data for commissioning and how this might relate to insurance companies.

Most commissioning in the NHS is done by groups of GPs in Clinical Commissioning Groups (CCG). They work with local hospital and community healthcare providers to design contracts for everything from diabetic eye checks, physiotherapy, cancer-care and so on. After the NHS act, Clinical Support Units were developed to support groups of CCGs because commissioning is technical, legalistic work beyond the skill set or capacity of CCGs working alone. The government have announced that CSUs can be privately run and managed and are actively seeking private investors.

It is generally acknowledged that care.data is essential for effective commissioning which in essence is the planning and contracting of care for a population. This kind of work is also done by health insurance companies. They are also in the business of risk selection – picking individuals at low risk of disease who least likely to cost them money, and service restriction – contracting with a limited range of providers for a limited range of services. The think tank Reform, whose recent chief executive Nick Seddon was appointed adviser to David Cameron, have been employed by the Shelford group of top NHS trusts to look at, amongst other things, personal payments for NHS care. Changing the NHS to an insurance system might be political suicide but technically it would be enormously facilitated by care.data.

The main effect of the NHS reforms has been a massive destabilisation of the NHS with the future of hospitals and services less certain than in any time in its 65 year history. Many of us are very concerned that out of this chaos, insurance companies will be given the job of NHS commissioning and care.data is part of that. This does not negate the enormous potential benefits for research and public health, but does help to explain the concerns of people who are objecting.

Ben Goldacre wrote an excellent summary of care.data which complements this blog. In short he says that the government must explain what data will be used, by who and for what. They must give examples of what will be allowed and what will not. Secondly they must explain how this data will save lives and how risks will be mitigated. Finally they must make it clear very severe penalties must be imposed for misuse of data, fines, for example, are useless. (I await news on this with baited breath, Ben suggests hanging miscreants from lamposts …)

An opt-in system would mean that overwhelmingly patients who are vulnerable, demented, illiterate and disorganised will not be included. This risks leaving the people who most need care out of research.

The government promised no more top-down reorganisations, no NHS privatisation and ‘nothing about patients, without patients’. When we raised concerns, we were patronised and told that we didn’t understand the reforms properly. They paused the reforms, ‘re-communicated’ them and continued without any substantive changes. The pause just announced in the care.data programme is highly reminiscent. They have lost public trust, and will have to work very hard to gain it back before the pause is over.

Update 25/02/2014

Unanswered questions via Bengoldacre today:

1.Do care.data team accept they should’ve had processes in place, to adjudicate on applications for data, *before* launching to public?

2. Do they accept this is more than a comms problem; and will they set a *date* for making a proper, concrete offer for the public?

3. Will HSCIC make fully available ALL documentation on the dodgy applications they incorrectly approved: minutes, attenders, application.

4. What are the data security risks for the organisations and individuals for whom the HSCIC incorrectly gave millions of patients re-identifiable patient data?

MPs say care.data is at risk after Tim Kelsey and other members of the HSCIC give evidence to the Health Select Committee today. BBC News.

Links:

If you use twitter, read tweets from @bengoldacre and #caredata to see the proceedings of the Health Select Committee today (25/02/2014) in which those in charge of the care.data program gave a pitiful performance and were completely unable to give any assurances about data safety.

NHS Choices

Care data leaflet

HSCIC admits rules were not followed when hospital data was handed to insurance industry’.  BBC News 24/02/2014 This report is particularly worrying because the HSCIC won’t say which rules were broken, nor will they say who data was shared with until ‘later this year’…

Ben Goldacre: The NHS plans to share data can save lives, but must be done right. Guardian: 22/02/2014

Summary of my views about care.data by Professor Sir Brian Jarman. Technical, but clear and critical analysis of confidentiality issues. 

Paul Bernal. Care.data and the community. Excellent blog about other potential misuses of care.data. 23/02/2014

Flying Blind – Assumptions, metaphors and an alternative way of looking at the care.data scheme. – NHS staff are drowning in data, they need time with patients and time for dialogue. David Gilbert. Centre for Patient Leadership

Care Data. Why are Scotland and Wales doing it differently? Margaret McCartney British Medical Journal.

Will Care.Data Lansleyism prefigure reconfiguration conflagration? Health Policy Insight

Your bits in their hands. Kings Fund Health Economist John Appleby on lessons from hospital data sharing.

NHS England’s director of patients and information Tim Kelsey says ‘pseudonymisation at source’ technology is not ready for use on the care.data programme. E-Health insider. 21.02.2014

Dr Neil Bhatia. GP website about care.data

Allyson Pollock: Why the public should opt in to care.data and out of data privatisation.

Alcohol unit calculator. 

When doctors become patients

It’s taken me over 20 years to appreciate just how little attention is paid in medical education to what it’s like to be a patient.

Often, only the experience of becoming seriously ill finally compels [doctors] to change their thinking, and see themselves and their work more broadly, and from a different vantage point to realize how their prior professional view is just one of several possible perspectives. When Doctors Become Patients

I decided to write this blog after reading The Other Side, by Dr Kate Granger. Kate is a young doctor and a cancer patient dying from a rare and aggressive form of cancer. She wrote The Other Side to help health professionals ‘to be better able to understand exactly what being the patient is really like and how their behaviours, no matter how small can impact massively on the people they look after.’ Her book succeeds in doing this better than anything I have experienced in formal medical education. Doctors’ illness narratives have a particular power in part because there is the inescapable sense that if it happened to ‘one of us, it could also happen to me’. But there is more to it than that. It is easy, particularly for a student or a young doctor to treat one patient’s account of illness as a strictly personal tale, with little generalisability – interesting, but of little obvious educational value. On the other hand, when an experienced doctor, even a relatively young one, writes about their experience as a patient, with an explicitly educational purpose, we pay closer attention to what they have to say.

Kate’s book is one of a growing number of books, articles and blogs written by doctors about their experience of illness, many written with similar intentions, for example, a GP writing about bipolar disorder for the British Medical Journal in 2001,

I’ve become sensitive to mistakes that other doctors make when managing me, and I have translated those mistakes into corrections in how I myself manage people with depression. The point of this article is to share these with you.

One of the first of these educational narratives was published in the Lancet in 1982 with a longer pamphlet version produced for use in medical education at Queen’s University Belfast. Dr Campbell Moreland was diagnosed with testicular cancer at the age of 28 and in common with many doctor-patients wanted to emphasise the importance of communication skills, especially in relation to end of life care, when treatment was no longer curative,

If a doctor’s satisfaction comes from the concept of disease/diagnosis/treatment/cure, then he or she is likely to be disappointed and may travel along the path of narrow-minded, self-centred glory. When this linear process breaks down, as in chronic relapsing illness or terminal illness, the doctor will fail to achieve job satisfaction by his own definition. The patient will expect the doctor to understand his or her situation, but since the doctor cannot, the patient will feel rejected.

He noticed this not only among the doctors who were treating him, but also among his colleagues,

As [the cancer] became more chronic, some lost interest, and … others who met me completely ignored the fact that I was ill despite my appearance … This may have been another manifestation of the denial mechanism- my colleagues denying that I was ill and protecting themselves from a reminder of their own vulnerability to disease. Doctors often forget that they are also human.

This blog accompanies a lecture that I have given to medical students at Guys and St Thomas’ and GP trainees from Tower Hamlets. I will be soon be presenting it to students at Bristol and Imperial Medical Schools. I would like to present it elsewhere and continue to develop it. From the narratives I have read there emerged four themes, which are presented as a discussion here and as quotations from doctor-patients in the slides. A great deal of what follows is also quoted from doctors who are, or were patients.

The themes:

Loss of identity

Stigma, shame and loneliness

Being seen as a person

The poor standards of care -and medical scepticism

Loss of identity

Illness comes from the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick … although we prefer to use only the good passport, sooner or later each of us is obliged, a least for a spell, to identify ourselves as citizens of that other place. Susan Sontag, Illness as Metaphor.

Doctor-patients are reminiscent of our ancient forebears, Shaman and traditional healers. They were a special caste, uniquely able to access both human and spirit worlds and act as intermediaries between them. It took special powers bought about by careful selection, arduous training and demanding rituals, sometimes-involving hallucinogenic drugs to be able to do this.

The Wounded Healer in medicine and theology is one who has special healing powers by virtue of their experience of illness.

In the traditional African Xhosa culture, becoming a healer is a process that involves experiences of illness, physical injury and pain. One of the Xhosa rites of initiation is Thwasa, a state of illness. The person experiencing it will undergo ailment and pain of body and mind and be made to suffer stomach aches, nervousness, and severe ache in the back, as well as possible periods of unconsciousness. During these attacks, this person might also become emotionally withdrawn and be troubled by dreams. Thwasa is crucial for becoming a healer. Illness is regarded in this case as the state through which communication from the person’s ancestors occurs. In Xhosa culture, it is believed that a person is chosen to protect and heal people by becoming an igqira (healer), and his ability to enter a state of Thwasa is both a part of his training and an indication that the ancestors have preferred him. The process of Thwasa demonstrates how close this tradition is to the Western concept of the wounded healer: the interpretation of illness in Xhosa society is based on the rationale that it is from experiencing illness that the person undergoing training will learn how to observe, diagnose and treat other people’s illnesses.

By contrast, in modern medicine, ‘the nature of doctors’ training results in a deep rooted sense of being special and the institutionalisation of [our] professional identity’ which (re)enforces the divide between us, the healthy doctors, and them, the sick patients. But it is not only our good health, but also our refusal to ‘give in’ to sickness that divides us.

A qualitative study of GP attitudes to their own health summarised the views of 27 GPs by means of an ‘informal shadow contract’ which emphasised this attitude,

I undertake to protect my partners from the consequences of my being ill. These include having to cover for me and paying locums. I will protect my partners by working through any illness up to the point where I am unable to walk. If I have to take time off, I will return at the earliest possible opportunity. I expect my partners to do the same and reserve the right to make them feel uncomfortable if they violate this contract.

In order to keep to the contract I will act on the assumption that all my partners are healthy enough to work at all times. This may mean that from time to time it is appropriate to ignore evidence of their physical and mental distress and to disregard threats to their wellbeing. I will also expect my partners not to remind me of my own distress when I am working while sick.

Last Wednesday as I cycled to work, I rode far too fast over the cobbles at the end of the street, barely 100 meters from my surgery. I went flying. My left hand hit the cobbles, hard. It hurt a lot more than I was expecting. I arrived and scrubbed the dirt out of a bleeding hole in my palm and asked our practice nurse to help me put a dressing on it. But most of the pain was coming from the base of my thumb, and I suspected strongly that it was fractured (broken). I had an evening surgery with 15 booked appointments; three of them were patients with severe learning difficulties here for an annual check up. So I took two paracetamol and saw my patients. I finished at 8pm and cycled home – about 25 minutes in the dark. I was too tired to go to hospital and so the following morning I went to A&E and an Xray confirmed a Bennet’s fracture and I left in plaster. I did the same thing when I fractured my scaphoid a few years ago.

A survey of British doctors back in the ’90s found that 87 percent of G.P.’s said they would not call in sick for a severe cold (compared to 32 percent of office workers who were asked the same question). In Norway, a 2001 survey revealed that 80 percent of doctors had reported to work while sick with illnesses for which they would have advised their own patients to stay home. Two-thirds of these illnesses were considered contagious. Why Doctors Don’t Take Sick Days Daniele Ofri, New York Times

Not ‘giving in’ is an important part of the way doctors think about and judge themselves. Many would deny that they judged others in the same way, but doctors who have been patients give us reason to doubt that. The less frequently referenced continuation of  Susan Sontag’s quote above is particularly perceptive,

‘[it is] not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation’.

Despite the biological substrate of clinical depression or the genetic underpinnings of alcoholism, many physicians still believe these disorders are evidence of a lapse of will or moral failure, especially when they appear in other physicians.

Stigma, shame and loneliness.

The divide, and the associated fantasies are nowhere stronger than in mental health. Perhaps unsurprisingly then, the majority of the doctor-patient narratives I found were about mental illness. Doctors have the same rates of depression, schizophrenia and bipolar disorder as their patients but are much more likely than their patients to commit suicide; female doctors are two and a half times more likely than their non-medical counterparts. The Australian Beyond Blue study last year showed that one-in-five medical students and one-in-ten doctors had suicidal thoughts in the past year, compared with one in 45 people in the wider community. Only two weeks before I gave this lecture about doctor-patients to 4th year medical students at Guy’s and St Thomas’ hospital, one of their year had committed suicide.

Many patients experience shame and stigma, and in one study 71% of doctors described themselves as embarrassed when seeing another doctor. Doctors with mental illness appear to be particularly vulnerable, as described by this psychiatrist with psychotic depression,

I had become a psychiatric patient and am embarrassed to say the stigma made me feel physically sick. I felt ashamed of being “weak” and hated the idea that personal information and “failings” were going to be kept on an NHS database. As a psychiatrist it is deplorable that I had such negative cognitions about mental illness. I can put some of it down to my depressed thinking at the time, but not all of it. Despite the Royal College of Psychiatrists anti-stigma campaign and some eminent psychiatrists and celebrities being candid about their illnesses- stigma is alive and well.

Anya de Longh was forced to give up her medical studies because of a rare and severe neurological disease. In her latest blog she writes about the self-stigmatisation and shame that arose when the possibility was raised that some of her neurological symptoms couldn’t be explained by her disease,

I fear about being so open about the psychological aspects of my illness because the stigma I apply to myself is likely to be applied by others. Writing this and being so open about the conflicting emotions that it entails has made me question my own sanity on more than one occasion!

Shame is associated with drug and alcohol abuse, both of which are more prevalent among doctors than their non-medical peers. Shame also causes social withdrawal and isolation and stops us seeking help when we need it, because we are too strong, or not worthy;

We feel shame and we fear being judged and stigmatized so we tend to suffer in silence and carry on in a profession that prides itself on stoicism and bravado Wallace

Shame is feeling that I am not worthy of love, care and attention … Underpinning shame is excruciating vulnerability, the fear of being seen as we really are.
Brené Brown: The power of vulnerability

Sometimes it is a more-straightforward denial that stops us seeking care, as explained by this GP with bipolar-disorder,

Don’t assume depressed doctors know that they’re sick. The view is quite different from this side of the sanity divide. Chances are that we think that we are only stressed by work, and are distressed by our perceived inability to cope. An insiders guide to depression.

Loneliness

Many doctors spend so much time at their work that when they are unable to continue because of sickness, and are cut off from their busy peers, they become lonely and depressed.

The physical effects of illness compound this, as these two young doctors with metastatic cancer explain,

I had unfailing family support and the best treatment available, yet I have experienced the acute sense of isolation and, occasionally, the despair endured by many cancer patients Tertoma of the Trestis. Lancet 1982

Unpredictable, treatment-induced fatigue means I can’t reliably attend social events. I dread small talk. The inevitable “What do you do?” “I’m not working, because I’ve got cancer.” “Oh, you’ll be fine.” “Um, no, actually; I might not be. It’s quite advanced. Miracles happen, though” “Oh.” Person exits right to stiff drink. (The other version of this conversation concerns my now-permanent baldness: “But of course your hair will come back.” “Actually no.” “Oh.” Exit right. Etc.) I don’t blame people for coming to an abrupt halt in the conversation: what are they supposed to say? Before I got ill, I was exactly the same. Who wants to talk about the precarious nature of life and death when you could be networking? Social events aren’t designed to hold these kinds of conversations. Anna Donald

Seeing a patient as a person

One of the most common themes to doctors’ accounts of being patients was the importance of being seen as a person.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability Hippocratic Oath – Modern Version

One time medical student and now full-time patient, Anya De Longh described the contrast between being a medical student and a patient in an outpatient clinic,

In my first rotation, orthopaedics and rheumatology, I lost track within the first week of how many outpatient appointments I sat in on. I didn’t really think anything of them – they are just another 15 minute slot of time filled with learning in a very busy day. As a patient, my perspective couldn’t be more different. I have one appointment with my consultant a year, and spend weeks planning and preparing, then a month recovering emotionally.

Dr Kate Granger, revealed in several passages in The Other Side how shockingly often healthcare staff failed to introduce themselves, such as on this occasion when she was admitted to hospital with an infection due to complications from her chemotherapy,

I am laid on a trolley in the emergency department feeling extremely unwell. My temperature is 39 C and my pulse is 150. It is about 36 hours since I underwent a routine extra-anatomic stent exchange, and I have developed sepsis. A young surgical doctor clerks me in. He does not introduce himself by name, instead plumping for, “I’m one of the doctors” A nurse comes to administer my IV antibiotics. She does not introduce herself at all. Over the 5 day admission I lost count of the number of times I have to ask staff members for their names. It feels awkward and wrong.

In my experience, medical students rarely ever fail to introduce themselves, but once they become infected with the culture of working life, they (we) slip into bad habits.

Kate’s campaign to get us to start introducing ourselves again is called, #hellomynameis. She explains;

If being ill has taught me anything about being a doctor it is the importance of seeing a patient as a person and not merely a condition or disease sat in a hospital bed. It is amazing what you learn about people if you just ask. I have looked after a world record breaking knitter, an Olympic cyclist and a lady who had eleven children in the last few months. The disease focused clinicians may see these facts as irrelevant, but I think they are central to understanding the person, how their pathology impacts on them and why they are special to their family.

When was the last time you stopped and had a conversation with someone on the ward just for the sake of having a conversation? We all blame being too busy on not doing this but are we really? Do we not have 10 minutes to sit down and explore someone’s worries? Having a chat can be therapeutic in itself. I know this. A few months ago when I was struggling with the uncertainty of my prognosis and the effect this was going to have on my career I had a long chat with my Oncologist. There was no examination, no diagnosing, no investigations and no prescribing; just talking. And it helped. It really didKate Granger

Continuity of care, the deliberate organisation of patient care so that the same doctors and nurses attend to the patient, was mentioned by several doctors. Having a serious, complicated illness and feeling exhausted doesn’t leave patients in the mood for answering the same questions over and over again. As medical sociologist and anthropologist Arthur Frank writes, “Th[e] structured disruption of continuity of relational care is more than an organisation problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other.”

Poor standards of care and medical scepticism.

Lack of courtesy is just one aspect of poor care. Many doctors dread illness because they are acutely aware of modern medicine’s weaknesses and limitations. Albert Klitzman interviewed doctors who were patients for his book, When Doctors Become Patients,

[Doctors as patients] also became aware of how many mistakes are made, like the wrong dose of medication. They were astonished by that.

Kate Granger gives another example,

The following morning I notice that MRI is written next to my name on the ward white board. At first I wonder if this is just an administrative error and it is actually meant to say ultrasound. They wouldn’t have requested an MRI without talking to me first surely. I get claustrophobic sat in the back of a three-door car so the thought of having an MRI is not a pleasant one.

The next thing I know a porter has arrived with a wheelchair to take me for the mysterious MRI. I question if it is a mistake so we read the medical notes. A discussion between my Consultant and the Gynae-Oncology team is clearly documented the previous evening suggesting an urgent MRI abdomen and pelvis in addition to the rest of the management plan. I can see that it is a completely appropriate investigation but I’m absolutely fuming she did not bother to discuss this with me. As I have no other choice I sit myself in the chair and am wheeled off to the scanner. My heart is pounding the whole way. The Other Side

After I gave this presentation to the Guy’s and St Thomas’ medical students, several described how shocked and disappointed they had been at the standards of care they had seen when they had accompanied relatives to hospital. Often it related to junior doctors trying to cover up for their obvious lack of knowledge, giving an evasive answer instead of saying ‘I don’t know’. When I fractured my finger last year I watched a junior orthopedic surgeon attempt to put a wholly inadequate splint on it and even when challenged, he persisted. Among the narratives I have read, communication skills are at least, if not more of a concern than clinical skills, as Campbell Moreland, the young GP with metastatic testicular cancer described,

In March, 1980, I underwent chest tomograms and a creatinine clearance test. I suspected lung secondaries but was not informed. I asked a junior doctor about my X-ray results. He went to the X-ray department, came back, and told me the films were normal. I know this was a blatant lie, as did he. My trust in him was irreversibly damaged. How much better had he said, “I don’t know, but I’ll find out. If it is bad news do you want to discuss it?” Junior doctors are shy of giving a patient bad news because they are afraid both of the patient’s reaction and of their consultant” Tertoma of the Trestis. Lancet 1982

The third day of admission brings me some examples of doctor’s communication skills being the worst I could possibly imagine under the most painful of circumstances. First thing today I have been crying. It is the day of the MDT meeting, I am frightened and it feels as though nobody is talking to me. I know my MRI report is available, but again no-one has taken the time to discuss this with me so I know it must be bad news.   I’m laid in a hospital bed sobbing and scared, about at the most vulnerable a patient could be. Kate Granger

Other doctors who had been patients appreciated the anxiety patients suffered whilst waiting for results,

Many ill doctors now came to identify more with their patients (e.g., getting results to patients faster); gay doctors with HIV who treated members of the gay community often encountered this issue with added urgency. Klitzman

Medical knowledge also makes doctors more aware of the limitations of medical care. Of particular note, doctors choose less intensive treatment at the end of life than they recommend for their patients.

Faced with a terminal diagnosis some doctors turn to alternative therapies and become more interested in the spiritual aspects of care.  In his academic account of doctors as patients, Albert Klitzman was particularly moved by this,

Their scientific training did not inure these physicians against irrational, nonscientific beliefs and behaviors. The degree to which “magic” and irrationality persisted in the lives of these scientifically trained doctors surprised me. They often perceived medical knowledge as overrated, and magically imbued. Despite this age of ever-increasing scientific knowledge, magic endures.

Dr Anna Donald blogged for the British Medical Journal about her experience as a patient with metastatic breast cancer. She was an exceptional academic in the field of evidence-based medicine, and yet her blogs are full of descriptions of prayer and meditation. She described the value of massage and alternative diets, and became a firm advocate of Emotional Freedom Technique (EFT) 

Conclusions

Our professional identity shapes what are often destructive attitudes towards ourselves and our patients, especially when the diagnosis is unclear, the symptoms hard to treat and the prognosis poor.

Protests from patients that doctors are too busy to talk or that we lack sympathy or empathy are often met with defensiveness and excuses, but doctors who have experienced the isolation, fear and despair of serious illness are keen to emphasise the importance of humanity in care.

Our colleagues who have suffered as patients often feel compelled to report back, and what they have been telling us has been remarkably consistent over the years. It is time we paid more attention.

I conclude with a quote from GP, Dr Liam Farrell, who wrote about his experience of, and recovery from addiction,

when you are faced so starkly with your own vulnerability, it does make you understand patients so much better … We are frail, we are human — bad things can happen to us, just like anybody else. I think we have to be aware of our own mortality and our own frailty as well, and not be ashamed to look for help if we need it, and also to watch out for each other – not in a ‘big brother’ kind of way — but I think we have to look out for each other’s health.

References and Further Reading:

Superb article by the late Professor Keiran Sweeny who was diagnosed with Mesothelioma, followed by video interview below. http://www.bmj.com/content/339/bmj.b2862

 General articles:

Dr Kate Granger’s blog.

Anya de Longh’s blog

Sue Eckstein’s blog

When Doctors become Patients. Book by Robert Klitzman.

Dr Anna Donald. From the Other Side. Series of blogs for the BMJ during and up to her death from metastatic breast cancer.

How to be a bad gastroenterologist: A doctor’s experience of a poor bedside manner

When GPs burn out, why does the medical profession continue to let down its own? Pulsetoday

 Why Doctors Don’t Take Sick Days  Daniele Ofri New York Times

Do you have your own doctor, doctor? BJGP 2008

The Mental Health of Doctors: A Systematic Literature Review August 2010

Stress and depression among medical students: a cross-sectional study. Med. Ed. 2005

Physicians can be better doctors by being patients. Kevin MD.

Doctors get sick too. The Lancet 2009

Helping physicians cope with their own chronic illnesses West J Med 2001

On breaking one’s neck. Arnold Relman in the New York Review of Books

How do medical students cope when illness hits close to home? Guardian Feb 10th 2014

Loss of identity

Illness as Metaphor and AIDS as its Metaphors. Susan Sontag 1978

 When doctors need treatment: an anthropological approach to why doctors make bad patients Gerada C, Wessely, A BMJ Careers 12 Nov 2013

The Wounded Healer as Cultural Archetype 

The wounded healer

Healing ourselves: ethical issues in the care of sick doctors

Stigma, shame and loneliness.

Doctors go Mad Too. Royal College of Psychiatrists 2013

Challenge of culture, conscience, and contract to general practitioners’ care of their own health: qualitative study BMJ 2001

Doctors’ health: stigma and the professional discomfort in seeking help Psychiatric Bulletin 2012

Shame! Self-stigmatisation as an obstacle to sick doctors returning to work: a qualitative study BMJ Open 2012

Mental health and stigma in the medical profession Wallace J.E. Health (London) 2012 16: 3

Doctors as patients: a systematic review of doctors health access and the barriers they experience. Br J Gen Pract. 2008 July 1; 58(552): 501–508.

Bulletproofcardie. A GP with breast cancer:  “the shocking hostility that some healthcare professionals display towards vulnerable colleagues”

 Doctors and depression: Guardian October 2013

An insider’s guide to depression. A GP writes for the BMJ 2001

Review of literature on the mental health of doctors: Are specialist services needed? Journal of Mental Health 2011

Being Seen as a Person

Kate Granger: Painting the Picture Blog

Anya De Longh. From Medical Student to Patient. Blog

Treating the whole patient: passing time-honoured skills for building doctor–patient relationships on to generations of doctors Medical Education Jan 2014

Continuity of Care. Needed now more than ever. Blog with references.

Poor standards of care and medical scepticism

When Doctors become patients. NY Times.

Doctors and Death. Blog with references.

Anna Donald. Blog

Further reading.

An extremely interesting time to die. Ann McPherson. BMJ

Mom at bedside, appears calm. Doctor’s description of being a mother to a sick child,

People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.

What it’s like to take and withdraw from morphine. Dr Liam Farrell.

The Disabled Medic blog

Tales of pain and healing from a physician who knows both

Mental health and stigma in the medical profession http://hea.sagepub.com/content/16/1/3.abstract

http://giasison.blogspot.com/

http://tellingknots.wordpress.com/

How having terminal cancer has made me a better doctor | Mail Online 

Doctors get cancer too. BMJ 

“When Doctors Get Sick,” by Dr. Mallika Dhawan on Vimeo

YJHM: When Doctors Get Sick: A Reprise 

When doctors get sick it ain’t pretty

When Doctors Get Sick – Google Books 

http://sydney.edu.au/medicine/alumni/radius/2009/mar.pdf

Cases – Doctor, Please Carve Out the Time to Heal Thyself – NYTimes.com

What Happens When One of the World’s Leading Breast Cancer Doctors Gets Breast Cancer? http://www.phillymag.com/articles/feature-what-happens-when-one-of-the-world-s-leading-breast-cancer-doctors-gets-breast-cancer/

Doctors as patients: book documenting mental illnesses in GPs and others:http://www.bmj.com/content/330/7505/1454.2

The relationship between resilience and personality traits in doctors: implications for enhancing well being 

What is patient experience? Suzanne Shale @ethicsconsult 

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Doctors and empathy

nelson-mandela

“My back is killing me doctor, I’ve barely been able to get out of the house for the last few days, I’ve hardly slept, I’m in agony”

“uh huh … and, um, when did it start?”

“A few days ago … I’m really worried, I’ve got two kids, I’m on my own and if I don’t get to work I don’t get paid, I’ve been in tears all morning, I can’t cope any more …”

“mmm, right, and er, have you had pain like this before?”

“yes, but never this bad, sorry -[cries] do you have any tissues?”

“oh, yeah, sure, there you go. So, um, have you taken anything for it?”

etc.

I wonder why it is that not a single medical practitioner has said to me that they are sorry to hear I am ill. Such a banal social convention: I am sorry to hear about your illness. Why does this convention cease to apply as soon as one enters a hospital ward or a doctor’s clinic? Havi Carel, Illness.

When I read this, barely three months ago, I pulled up, like a race-horse in front of a fence that I expected to clear without breaking my reading stride. “She’s talking about me!” In my haste to make a diagnosis, rule out a serious cause or uncover my patients’ ideas, concerns or expectations, I all too rarely showed concern, expressed sorrow or sympathy. I was good at showing interest I think, but never showed a social convention so banal as, “I’m so sorry,” on giving a diagnosis of cancer, or “that sounds awful for you,” to someone whose operation went badly, or “I can barely imagine how hard that must be, tell me how do you cope?” to someone who is depressed, or, “I can see you’re frightened, it’s ok, I’m going to look after you”, to someone having an asthma attack.

I don’t think I’m a bad doctor, or even an indifferent or cruel one. But I’ve long suspected that empathy is not one of my strengths. I tested this hypothesis by asking my wife and close friends and they concurred. Sceptical about their easy agreement and this unscientific method, I completed an online empathy test, which showed that I ‘have a lower than average ability for understanding how others feel and responding appropriately’. My friends knew this already, but when I shared the results via social media (twitter) it was met with general disbelief from people who know me only through my writing.

This raises several questions. What is empathy? Are we faking it and does that matter? Why is everyone talking about empathy now? Can it be lost? Can it be taught? What is empathy for?

What is empathy?

Studies about empathy,  such as those listed at the end of this article, tend to have somewhat idiosyncratic definitions of empathy. I wasn’t surprised to discover that it has been described as ‘difficult to define and hard to measure’.

“Empathy is the feeling that persons or objects arouse in us as projections of our feelings and thoughts. It is evident when “I and you” becomes “I am you,” or at least, “I might be you.” Spiro

[E]mpathy is a multi-step process whereby the doctor’s awareness of the patient’s concerns produces a sequence of emotional engagement, compassion, and an urge to help the patient. Benbassat and Baumal

A predominantly cognitive (as opposed to affective or emotional) attribute that involves an understanding (as opposed to feeling) of patients’ experiences, concerns, and perspectives combined with a capacity to communicate this understanding. An intention to help by preventing and alleviating pain and suffering is an additional feature of empathy in the context of patient care. Hojat et al. 

In writing about the moral development of medical students, Branch describes moral behaviour in a very similar way,

[the] components that contribute to moral behaviour [are]- moral sensitivity, commitment and implementation, in addition to moral reasoning.

Many take care to make a distinction between empathy and sympathy, for example,

“Sympathy is ‘concern for the welfare of the other’, while empathy is the ability to appreciate the emotions and feelings of others” Smajdor

I looked into the crowed waiting room and saw two small children playing happily. I had been on duty for nearly 5 hours without a break and was exhausted. I had agreed to see them after speaking to their mum on the phone earlier. She said they had been up all night and were feverish and struggling to breathe. Now they were jumping up and down. I watched them irritably for a short while, I felt far more unwell than they looked. Perhaps I should keep them waiting while I made some more phone calls or checked some blood results. ‘Why are they here?’ I muttered to myself, ‘they’re obviously not ill’. My subsequent consultation was brief and brusque.

Three years later, I’m struggling. I’m at work at 7pm on Thursday night with two patients left to see. I’ve not slept in days. At home my 2 children have been run-down with colds for the last week, noses completely blocked, they’ve been getting up several times at night crying and /or climbing into my bed and then wriggling, snoring and coughing constantly. A couple of times I tried and failed to sleep on the floor or in one of their 4 foot beds. I was woken last night by a feverish, shivering child beside me. I cannot think clearly, my mind is grinding through the gears like a tractor going up the side of a mountain. It takes me twice as long to make a decision as it should and I can barely remember what my patients have told me when I try to type up their notes. Now I know something of what it’s like to be up all night with a sick child, how hard it is to make a rational decision when the night’s fog rolls through the clear light of day, of the enormous contrast between the pale, feverish, wheezing child of the night and the happy, playful child of the day.

“You look shattered”, is the first thing I say to the mum as she brings her children in. “You too doctor”, she replies. We understand each-other. The subsequent consultation was friendly and productive.

Cognitive and affective empathy.

According to psychology Professor Simon Baron Cohen it is helpful to distinguish between two types of empathy: cognitive and affective (emotional). Empathy is distributed unevenly among us, so that we can have low, average or high levels of either type. Baron Cohen’s area of research is autism and at the severe end of the autistic spectrum, people have very low levels of cognitive empathy as a result of a strong drive to systematize things. This includes attempting to systematize people’s emotions and behaviour, which cannot be clearly systematized, and so they find it hard to pick up social cues. Interestingly though, they often have high levels of affective empathy so that they are easily and profoundly moved by other peoples’ emotional states. Baron Cohen contrasts people with autism with people lacking affective empathy. In severe cases, this is characteristic of people with borderline, psychopathic and narcissistic personality disorders. People with psychopathic traits typically have high levels of cognitive empathy, which enables them to manipulate other people, but ‘they don’t have the appropriate emotional response to someone else’s state of mind, the feeling of wanting to alleviate distress if someone’s in pain, [that suggests that] the affective part of empathy is not functioning normally.’

I think that this is a very important distinction and I shall come back to it towards the end of this essay. It is important to note that the none of the studies about medical professionals and empathy make this distinction.

Why is everyone talking about empathy now? Is it being lost? And if so why?

The thought that a healthcare professional might lack the emotional response  necessary to want to alleviate distress is deeply worrying to most people. Recent high profile revelations from Winterbourne View care home for people with learning difficulties, where undercover footage showed staff repeatedly assaulting patients, and from Mid Staffordshire hospital where elderly patients were neglected, has led many people to ask whether health professionals have lost empathy and compassion. The ideas that medical professionals lack empathy and that medical education and clinical culture erode empathy have been hotly debated for years, and as the articles below suggest, the weight of opinion is that there is an erosion of empathy during the process of becoming a doctor. It is easy to think of reasons why:

  • In medical education students do not experience as much care and support from those that teach them as they experience humiliation and neglect
  • The focus of medical education is on learning  facts about diseases rather than learning how to understand people with diseases
  •  Medical education pays little attention to the social and political determinants of health
  • A lack of role models. One study found that 34% of medical students identified a lack of good role models as a barrier to learning about empathy. In the same study, 64% of students said that time pressure was a barrier. These are serious concerns in a medical culture that is increasingly time pressured and in which ever increasing amounts of education are being delivered electronically.
  • The undergraduate curriculum and the working conditions of medical staff are intensely pressured
  • Years of under-funding and under-staffing are now being compounded by cuts and targets
  • An increasingly competitive environment
  • An increasingly threatening environment: Threats cannot make healthcare workers more compassionate
  • The loss of continuity of care which is essential for relationships to develop between patients and professionals

Empathy and the hidden curriculum

The culture of medical education, as distinct from the subjects taught, is referred to as ‘the hidden curriculum’. It is here that behaviour or virtues are learned, as distinct from the ethics taught in the lecture theatres:

… medical training above all else involves the transmission of a distinctive medical morality… To recognise medical training as a process of moral socialisation is to acknowledge medicine’s cultural distinction between attitudes and behaviour for what it is – something much more ideological than rational. What students learn about the core values of medicine and medical work takes place not so much in the content of formal lectures … or at the bedside (medicine’s preeminent metaphor) but via its more insidious and evil twin, “the corridor”. It is time medicine started claiming ownership of both realms. Hafferty 1994

If at one level empathy can be demonstrated by a ‘banal social convention’ such as acknowledging my patient’s suffering, at another, empathy is inseparable from the moral obligation to care. When we say that doctors and nurses lack empathy, at one level we might actually mean that they simply lack basic courtesy and at another deeper level we mean that they don’t actually care.

Perhaps etiquette is a thinner version of empathy as ethicist Anna Smajdor, in an excellent paper about the limits of empathy in medical education and practice concludes. She suggests that we should settle for teaching this stripped down version of empathy. After all, it is clearly in short supply as any patient or health professional will testify. Kate Granger’s experiences of being a patient with cancer, led to her powerful call for healthcare professionals to introduce themselves. #hellomynameis has made a great and lasting impression.

What is empathy for?

Smajdor is not alone in suggesting that we settle for a limited version of empathy, Hojat et. al. in common with, and more explicitly than other authors, share the opinion that cognitive empathy is good for doctor patient relationships, but affective empathy, which is more like sympathy, is bad

Cognitively defined empathy always leads to personal growth, career satisfaction, and optimal clinical outcomes, whereas affectively defined sympathy can lead to career burnout, compassion fatigue, exhaustion, and vicarious traumatization.

I can understand the risks, I experience the emotional labour of care every day, I know what it is like to visit a dying patient at home and then see a mother with post-natal depression and another 20 patients in a single morning and then repeat work of the same emotional intensity in the afternoon, and the next day and the next. But if an excess of affective empathy can lead to burn out, then losing the ability to engage emotionally is a sign that we are burning out. Empathetic, emotional encounters are the highlights of my working life. They may be bitter-sweet, but I wouldn’t ever wish to be without them. This isn’t something that GPs need but not surgeons. After an extraordinary and profoundly empathetic account of trying and failing, to save a young man’s life, South African tauma-surgeon, Bongi concludes,

I no longer wanted to be what i am. i no longer wanted to struggle and fight in theater against the odds to stave off the inevitability of death. i no longer wanted to see the snuffing out of promise and life. i no longer wanted to think about the devastation left in the wake of the disasters that cross my table. i no longer wanted to be a surgeon. Thumbs Up

You have to read the full account to appreciate that his is not an essay about the dangers of too much empathy, but an account of the great pain that is sometimes, in extraordinary circumstances a necessary and essential part of care. It makes our work deep and meaningful. Whilst it is possible to suffer from too much empathy and over-identify with patients, I think we worry too much about this, even if there are times when we are not as composed as our patients need us to be,

“I could see you struggling not to cry and I thought God if my doctor is crying, it must be bad, really bad. I needed you to be strong then, strong for me…………” GP, Dr Michelle Sinclair

We cannot, as professionals engage with the same degrees of empathy at all times, and yet I am deeply concerned that the growing interest in teaching empathy is an attempt to pour oil on a storm brewing in an ocean of medical (and more broadly, social/political) culture. As noted above, it is neither bioethics lectures or clinical skills training that shape doctors’ moral character and empathy for their patients, but the hidden curriculum, the cultures in which we living and working. Smajdor and other seem resigned to this,

What students can learn in their ‘soft skills’ training is perhaps more akin to the McDonalds style, ‘You have a nice day now’ than to the rich nuanced and individualised conception of empathy… But this is no bad thing – as long as we are able to recognise that this is the case and ensure that our doctors have at least this basic ability. As Jodi Halpern writes:’… physicians today are increasingly caring for strangers in bureacracies’. In these circumstances we lack the resources to be truly empathetic.’ Smajdor 2010

A culture that lacks the resources to be truly empathetic, for reasons I’ve suggested above and more, destroys that capacity for affective empathy most of all. A thin veil of courtesy may be all that remains after trying to look after too many patients with too few resources for too long in a threatening and bullying culture torn between cuts and targets. As Baron Cohen notes, people lacking affective empathy share is a childhood scarred by abuse and neglect. If we treat our healthcare workers this way, what we risk creating, is no less that what Baron Cohen described above, doctors and nurses trained in high levels of cognitive empathy, but stripped of affective empathy, in essence, psychopaths.

Empathy and the critic

English professor Ann Jurecic has written an excellent book, Illness and narrative about the multiple ways in which we read and interpret literature about illness and suffering. She pays particular attention to the complex nature and often conflicting uses of empathy, for example,

when public figures such as writers, entertainers, and politicians, evoke positive or negative emotions—from empathy and love to fear, agony, and shame—these feelings serve existing structures of power. Compassion, for instance, has been claimed by politicians across the political spectrum. In his 2000 presidential campaign, George W. Bush advocated a politics of “compassionate conservatism.” He used the term to suggest that dependence on free-market economics demonstrated compassion for society as a whole and justified reduction of the social safety net for the disadvantaged. To Bush’s opposition, the phrase came to signify a cynical politics that favored the wealthy while obscuring the deepening political and economic divide between the “haves” and “have nots.”

One reason empathy can serve power is by standing in the way of understanding. This can have important implications for doctors and patients. Brene Brown, one of the most widely quoted researchers in the field of empathy, says that ‘staying out of judgement’ is one of the four qualities of empathy. Patients often complain about being judged by doctors, and teaching empathy to doctors seeks, in part to overcome this. But a lack of judgement is at odds with critical, analytical, skeptical or otherwise thoughtful ways of responding to what our patients tell us about their illnesses. The practice of medicine is especially demanding because we are expected to be empathetic and skeptical at the same time.

It is also important to note that patients do not always want or need empathy so much as thorough professionalism. In her essay about living in pain, author Hilary Mantel describes meeting a neurologist,

His hour with me stands as a shining example of good practice. His history taking was so structured, so searching, so thorough, that I felt for the first time my pain was being listened to. The consultation itself was theraputic.

In her essay, Empathy and the Critic, Jurecic warns those who want to teach empathy to doctors,

the lived complexity of empathy cannot be reduced to an outcome to be assessed, a feeling to be argued out of, or a neurological response. For these writers, empathy is instead an inexhaustible subject for the practices of contemplation, exploration,  and creation.

Rescuing empathy.

Empathy depends on how we care for and relate to one another. The importance of continuity of care cannot be stated often enough. Its failure is encountered as often in general practice as it is in outpatient departments and hospital beds. Dr Kate Granger, in her book, The Other Side written to teach doctors what they can learn from her experience of being a patient with cancer writes,

A middle aged woman breezes into my room without knocking and announces her unpronounceable name, which I have no hope of remembering as she does not wear a name badge. She says she is a Gynaecology Registrar and has been assigned presenting my case at the MDT meeting. I think this strange as I have never met her before but continuity of care has already been sadly lacking since my admission. She continues to ask me inane questions in broken English, which make me think she has not even read my medical notes. I am really not in the mood to repeat myself yet again so am polite but relatively short with her in my manner.   She then says something that I still cannot fully comprehend to this day. She asks me why I am upset to which I respond “because I’m 29 years old and I’ve got cancer”. Her astonishing reply to my frank yet accurate answer is “do not be silly, this won’t turn out to be cancer, you are too young.”

Continuity of care is part of the price paid for convenience and consumerism as the government forces on the NHS ever-increasing opening hours, spreading human resources ever thinner. It is undermined by fragmented care from multiple providers, increasing specialisation and a loss of general medical and nursing skills as professionals find lower paid assistants take over ever more of their duties,

It is an enormous defect of health-care organizations that professionals often cannot express this commitment [to continuity] because there are constant territorial disruptions over who stays how long and does what. This structured disruption of continuity of relational care is more than an organization problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other. Arthur Frank

The relationship between doctors and patients depends on trust. This is because far more often than we care to admit, illness undermines autonomy, so that when we are sick we need to be able to hand over our bodies, our children or our elderly relatives to professionals to take care of them. The imbalance in power is inescapable, so we need to demand higher moral standards than mere etiquette. The relationship is, to borrow a legal term, ‘fiduciary’,

A fiduciary duty[3] is the highest standard of care at either equity or law. A fiduciary (abbreviation fid) is expected to be extremely loyal to the person to whom he owes the duty (the “principal“): he must not put his personal interests before the duty, and must not profit from his position as a fiduciary, unless the principal consents.

Until now, I’ve argued vehemently that patients are not customers, clients or consumers, but my detractors have stuck to their insistence that patients are customers. The process of patients becoming customers is beautifully portrayed in the satirical play, Knock, A Study in Medical Cynicism, The traditional model of medicine as a vocation, health care as a public good and the sick patient as a vulnerable citizen who has a right to care (and for whom the clinician has a duty of care) is steadily being replaced by a new era of market values where medicine is a business, health care a transaction and the sick patient a customer.

The consequence of this change in culture, as we shall see, increasingly I fear, is that empathy becomes little more than a mask to cover up and compensate for a culture that makes empathic behaviour extraordinarily hard.

It is not empathy training that we need, but a change in culture, in medical education, clinical practice and managerial and political culture, one based on mutual respect, trust, kindness and meaningful relationships,

we should emphasize that empathy is multidimensional, flawed, fascinating, and inescapably—for better and worse—at the heart of social relationships. Jurecic. Empathy and the Critic

As I concluded in my essay about kindness,

The relentless focus on efficiency and productivity in healthcare highlights the intrusion of market values into the NHS. There is an urgent need to to defend the values of social solidarity and rediscover an intellectual and emotional understanding that self-interest and the interests of others are bound together and acting upon that understandingBy committing ourselves to a change of culture that nurtures kindness we may yet rescue the NHS.

 

References and further reading:

What is Empathy?

Empathy doesn’t have to be intuitive to be real. Lovely article with Ethicist, Deborah Bowman. June 4th 2014

The Empathy Exams. An actress writes about receiving empathy when playing patients during medical student exams. Wonderful writing

A Compassionate New Year’s resolution? There is no compassion left in the NHS. Or so many reports would have us believe. Guardian 28/12/2013

What is empathy and can it be taught? Spiro 1992

Commentary by Spiro 

 What Is Empathy, and How Can It Be Promoted during Clinical Clerkships? Academic Medicine 2004

Thinking about empathy

Empathy’s failures. It’s easier to care for fewer people than more. Badscience 2010

Clarifying misconceptions about compassionate care Dewar 2013

The empathic surgeon: Thumbs up 

The Empathic GP, too much empathy?

The Doctors are not alright. “Recently one of my colleagues told me that they are emotionally incapable of caring for their patients any more. How can I help them?”

How your doctor feels about you could affect your care: The Hidden Curriculum 3.30-4.00  There is the explicit curriculum – what you’re taught and the hidden curriculum, what you see in practice. Also see paper on role models and empathy. 6.00 Clinical curiosity is a form of empathy. 10.50 Most of us when we’re sick want to be taken care of

Why doctors should be more empathic, but not too much more. Scientific American 2011

Empathy lost and found

When do medical students lose their empathy? Kevin MD 2013

Help, I’m losing patient-centredness! Experiences of medical students and their teachers. ASME 2010

Empathy, lost or found in medical education?

Is There Hardening of the Heart During
Medical School? 

The Devil is in the Third Year: A Longitudinal Study of Erosion of Empathy in Medical School AAMC 2009

Reports of the Decline of Empathy During Medical Education Are Greatly Exaggerated Colliver 2011

Teaching empathy

Empathy’s blind spot. John Slaby. Medicine, Health and Philosophy.

Teaching empathy to medical students: an updated, systematic review. December 2013

Teaching the Human Dimensions of Care in Clinical Settings

The limits of empathy: problems in medical education and practice Smajdor 2010

 From detached concern to empathy. Humanising medical practice

The hidden curriculum, ethics teaching, and the structure of medical education 

Supporting the Moral Development of Medical Students Branch 2000

The Ethics of Caring and Medical Education.

Is ethical development impeded in young doctors? Branch 2001 

Care for Nurses Only? Medicine and the Perceiving Eye

Medical Students’ Perspectives on Clinical Empathy Training

Should medical schools be schools for virtue?

Better learning, better doctors, better community: how transforming clinical education can help repair society Hirsh 2013

Patients’ Trust in Physicians: Many Theories, Few Measures, and Little Data Pearson 2000

On Kindness, John Launer: “I’m not a clever doctor, but I am a kind one.”

Association of Perceived Medical Errors With Resident Distress and Empathy

Reification and compassion in medicine: A tale of two systems

Compassion in healthcare Zulueta. Clinical Ethics December 2013 It is clear that attempting to force individuals to be compassionate whilst creating systems that militate against it will fail. Trying to harmonise conflicting ideologies is also undoubtedly a very difficult task. Perhaps we do need a radical paradigm shift

Clinical Ethics

Compassion isn’t the key to NHS failings according to UEA report (above)

The last thing the NHS needs is a compassion pill. Penny Campling, author of Kindness in Healthcare

Zero degrees of empathy. Simon Baron Cohen

Test your empathy

Phenomenology and its application in medicine

Patient enablement requires physician empathy: a cross-sectional study of general practice consultations in areas of high and low socioeconomic deprivation in Scotland

Empathy flowing both ways: The empathic patient

The Developing Physician, becoming a Professional  NEJM

A prescription for what ails: We need to promote great medical education today, and this requires that we renew our focus on building meaningful relationships between three essential people: the learner, the educator, and the patient

Brene Brown, The Power of Empathy Open Culture

The Emotional Labour of Care

A response to Medicine Unboxed Voice 2013

I was 17 years old, working as a health care assistant on an elderly care ward at Winchester hospital in 1988. I remember a morning shift when I was responsible for helping six patients get washed and dressed. No matter how demented or unaware of their surroundings, we wanted every patient to be properly dressed and “sat out”. Maureen was 81 years old, suffering from Alzheimer’s disease, her confusion compounded by a recent stroke and a urine infection. She was lying in bed, calling out, “Na! Na! Na! Na! Na! Na! Na! Naaaaaa!” I pushed my trolley with a bowl of warm soapy water, wipes, fresh clothes and clean linen up to her bed and pulled the curtains around. I squeezed her hand and said, “Good morning Maureen, I’ve come to help you get ready for the day”. She looked at me and continued saying, “Na!” I pulled back the sheet and saw that she had managed to pull off her padded incontinence knickers, faeces were all over the sheets, down her legs, up her back all the way to the nape of her neck and in her hair. She seemed completely unaware. I had been working on the ward for a month and was used to bodily fluids, but the smell still made me retch. I quickly stepped outside the curtains as my mouth filled with saliva and my stomach tightened. I concentrated on my breathing for a minute and went back inside to see Maureen holding her faeces-covered hands in front of her face. I grabbed a cloth and without having time to put on gloves or an apron, wrapped it around her hands. Instinctively she snatched them away – she shocked me with her strength and left my bare-hands covered in brown slime.

Eventually, she was sitting in the chair beside her bed, washed and dressed; it was 8.30am. I had another 5 patients to go. As I pulled back the curtains, I heard an unmistakeable squelching sound and its accompanying smell. Perhaps, I hoped, I was mistaken. Other patients were lying in soiled sheets and incontinence pads, calling out for help, or too confused or weak to call. Briefly I looked at Maureen, my bag full of soiled cloths, the bowl of tepid dirty, soapy water and the clock on the breakfast trolley, slowly cooling porridge congealing. Should I pull the curtains around again, start all over again? Keep the other patients waiting? I didn’t know, I really didn’t. I closed my eyes, gritted my teeth and I moved on to my next patient.

Eight years later I was 25 years old, working as a casualty doctor in Greenwich. It was about 2.30am, there were perhaps 12 patients waiting to be seen and the time between arrival and my assessment was about 3 hours: about average for that time of the night. The call came out on the PA to say that a serious trauma call was coming in by ambulance. I made my apologies to the tearful young woman who was having a miscarriage and ran to the desk. It was only my fifth day as a junior casualty doctor and it was my first trauma call. The nurse in charge took me aside. She explained that the three young women coming in were already dead, killed in a car crash. It was my job to certify them. All I had to do was go into the ambulance and check their vital signs. I remember standing outside in the icy february night. My heart was pounding in the back of my throat when the ambulance pulled up, blue lights on, siren off. The doors opened and one of the paramedics held the door open. I climbed in. It was the first time I had ever been in an ambulance. I can only remember one of the faces, or perhaps so long after the event what I can remember is an amalgamation of all three. She was the same age as me. Her face was grotesquely twisted, like her unbroken face might have looked like an hour ago, reflected in a broken mirror. Micropore tape held her jaw and temples roughly straight. Her eyes were wide open, each staring, frightened, in different directions. Certification of death meant shining a light into her eyes and listening to her heart and lungs. Kneeling down, praying or sobbing all seemed more appropriate. I performed my duty, solemnly, terrified, utterly unprepared. I walked back into the department, straight into an angry relative, demanding, drunkenly, when – the fuck – I was going to see his wife.

This week aged 42, I finished my morning GP duty session at 1.30pm after taking 53 calls from anxious patients, seeing 10 patients face-to-face and doing one home visit. I sent one woman to hospital with an infected knee, spent 30 minutes with a man who since his teenage daughter was diagnosed with schizophrenia has lost his job, been arrested for drunk driving and bought rat-poison with the intention of suicide, and stopped half the regular prescriptions for an elderly woman who told me she wanted to stop postponing death. I was just about to slip out to get some lunch when the practice manager called to ask if she could speak to me urgently, one of my patients had complained about me and had written to the local newspaper, the MP and the parliamentary health ombudsman. I opened my door to find one of our trainees waiting outside – “Please can you help me?” she asked. My next session was due to start at 2pm, there were 15 patients booked in, I had 43 blood results to check, a boxful of hospital letters, and a message from a social worker about a patient that was expected to die. I hadn’t had anything to eat or drink, or even time to pee since I left home at 7.15.

Work like this constitutes a normal working day for health professionals, but at the same time it is completely abnormal. To do this, and to engage seriously, compassionately and with full attention and moral seriousness demands what Iona Heath has described with eloquent passion as a “Labour of Love”. It is emotional labour. If we expect healthcare professionals to treat care as a vocation and patients with empathy and compassion, we need to appreciate the enormous burden of patient-centred care. We must treat carers with the kindness and respect we expect them to treat their patients. We must make time to help them give the personal care their patients need and time to listen to them. We must listen to their concerns, their doubts, fears and distress.

Not a day goes by without someone in health policy or politics claiming that the NHS has put professionals before patients for too long, or that public service propagates professional complacency or that the threat of competition or prison is needed to improve care or compassion. These claims are profoundly depressing and so far removed from my experiences of 25 years of personal care, so insulting to all the dedicated, caring professionals I’ve worked with, and so, so wrong for patients.

Why Managing Emotion is Such a Crucial Task

Menzies Lyth, the emotional labour of care and social defences, blog by Richard Smith

Thinking about the emotional labour of nursing –
supporting nurses to care Sawbridge Y, Hewison A 2013

How do you care? Wonderful blog by a nurse about how she cares for elderly paitents.

Threats cannot make healthcare workers more compassionate

The last thing the NHS needs is a compassion pill 

Do Doctors Need to be Kind?

Iona Heath Love’s Labours Lost: Why Society is Straitjacketing its Professionals and How We Might Release Them

A very similar experience described by a newly qualified nurse

Charging patients who Do Not Attend (DNA)

Patients should not be charged for failing to attend appointments.

 Originally published in Pulsetoday 

The introduction of a fine, either in terms of a refundable fee for making an appointment or a charge after non-attendance is an example of a zombie policy. Zombie policies, like user-charges for healthcare are repeatedly resurrected and killed.

The point about zombies is that no matter how many times we kill them they keep coming back. No matter how heavily armed I am with evidence or how deadly my arguments I will not kill them for long. Never mind for that matter, how loosely assembled the zombies are; their limbs may fall off with a slight tug or a casual wallop with a shovel, or they auto-decapitate with an accidental bump on a low doorway, they rise up again with a single brainless purpose, “we … will … punish the non-attenders… ”

Evidence for the effectiveness or even cost-effectiveness of zombies in reducing the numbers of DNAs is lacking. Evidence of cost-effectiveness for most health interventions is lacking, so perhaps it’s unfair to pick on zombies. Evidence for the health gain achieved by introducing zombies is also lacking. Ditto many health interventions.

Zombies and zombie policies nevertheless have a cult following. Some evidence comes from a government e-petition set up last year which ‘suggested that patients who DNA “should be given a small fine such as £30 or £50 – this will encourage patients to attend appointments or cancel them if they don’t need them.”The overwhelmingly enthusiastic respondents who have commented raise another important zombie theme, moral outrage. Moral outrage is usually more apparent when there is no evidence to be debated.

According to the comments after the e-petition, patients who DNA are “time-wasters”, “abuse the system”, “inconvenience other patients”, “don’t care”, “cost millions” and so on. A few people tried to raise concerns about the poor, vulnerable, elderly, forgetful and so on, but were outnumbered by those cheering for the zombie-policy.

Perhaps the most thoughtful analysis of why patients do not attend psychiatric outpatient appointments concluded that, “Low and high illness severity predict non-attendance. In other words the most common reason for not attending a first appointment is feeling better but the most serious is feeling too unwell”[i] Patients with mental health problems are the most frequently encountered in general practice, accounting for 30-40% of all appointments. In deprived areas, rural and urban, the proportions are higher. In other words, Zombie policies are a good way of impoverishing people with mental illnesses that are having a bad day.

Armed with this knowledge, a more humane response to a patient who fails to attend would be to phone them up and ask them if they are ok. Patients who are contemplating suicide might discover the will to live, and patients who forgot might be invited in to discuss their failing memory, or otherwise feel adequately chastised that they don’t do it again. If you take continuity of care seriously, then the patient will have their own doctor and a call can be a powerful force for good. But is it an evidence-based intervention for reducing patient DNAs? Who knows? We also have a range of other interventions including texting, emailing, not booking appointments too far in advance, allowing patients to choose times that are convenient for them, and so on.  An appointment system called “Patient Access” claims an 80% reduction in DNA rates as well as fewer A&E attendances, reduced doctor stress and lower patient waiting times.[ii]

But zombies are by definition brain-dead and cannot be fought with arguments about making things better for patients. For them, the fundamental point is that, ‘patients who do not attend are bad, and need to be fined’. Theirs is a moral vacuum, a market society where money governs social relations.

The final zombie-lesson and the reason we cannot kill them, is that they are a reminder of what we have ourselves become, stripped away of complexity. They are an expression of our base instincts. When we are feeling overwhelmed and bunt-out and want to scream, “I just can’t take it any more!” and we are paralysed and unable to think and just want to do something to protect ourselves – instead of thinking about our patients.


[i] Mitchell & SelmesWhy don’t patients attend their appointments? Maintaining engagement with psychiatric services  Advances in Psychiatric Treatment (2007) 13: 423-434 doi: 10.1192/apt.bp.106.003202

#hellomynameis

card

If you haven’t been following the wonderful Dr Kate Granger on twitter, #hellomynameis is her bold and brilliant attempt to get healthcare workers to introduce themselves. She was admitted to hospital with a serious medical condition and was seen by a series of doctors and nurses of different grades, none of whom told her their name.

Being ill, or even thinking that you might be ill, is anxiety provoking – it stops you thinking clearly, it makes it very hard to remember almost anything, and some of us, myself included, have problems remembering names at the best of times.

Kate asked for some ideas to give #hellomynameis some traction.

I think every NHS worker, doctors in particular, should carry some cards with their name and position and contact details and give them to the patient or relative/ carer so that they know who they have seen. My father has several different medical conditions and can never remember after an appointment if he saw the consultant, a trainee or a nurse specialist, let alone their name.

My patients are the same, they come back from their outpatient appointments confused by what they’ve been told about their disease and the plans for management and can almost never remember who they’ve seen.

Patients who don’t have their own GP frequently complain that they see a different doctor every time and cannot remember who it was they saw last time, but wouldn’t mind seeing them again, if only so they don’t have to repeat their story.

If in each of these situations the doctor had given the patient a card, then the patient or relative or GP would be able to ask to speak to the right doctor in case of concerns or complications.

Often during an in-patient stay, and sometimes during an outpatient visit patients meet a bewildering number of doctors. To mitigate the confusion of having a box-full of cards to take away, hospitals should take responsibility for the cards which should all include the name of a consultant, so that lines of responsibility are clear.

Once it started to become normal practice, patients would start asking if they weren’t offered one. It would improve continuity of care and accountability, increase trust, reduce anxiety, save time and embarrassment.

For more on #hellomynameis click on names

How to save the NHS

NHS SOS Edited by Raymond Tallis and Jacky Davis. Oneworld publications

nhs-sos-jpeg

Available from Keep Our NHS Public 

There are few things that staff can agree on in an organization as vast and multi-cultural as the NHS, but there are two fundamental points that almost everyone from porters and pathologists to receptionists and senior management can agree on, a dislike of constant government interference and a belief that healthcare should be provided according to need. The coalition’s NHS reforms managed to combine a massive government imposed re(dis)organization with the end of the legal duty of government to ensure healthcare is provided where and when it is needed. Given this, one wonders how they got away with it. NHS SOS explains how it happened, why it matters and what we can do about it. It documents the failures of democracy, the penetration of government by lobbyists, the uncritical regurgitation of government rhetoric by the media and the inability of the medical professions to mount a united front.

The principles underlying the reforms are that the traditional model of medicine as a vocation, health care as a public good and the sick patient as a vulnerable citizen who has a right to care and for whom the state has a duty of care are no longer fit for purpose in an era of market values where medicine is a business, health care a transaction and the sick patient a customer. Professor Allyson Pollock has been sounding the warning bells of NHS privatization since some members of the coalition were still at school and has co-authored a chapter with researcher David Price. They explain that the first clause of the Health and Social Care Act 2012 has repealed the duty of the Secretary of State to provide or secure a comprehensive health service. They assert the pivotal significance of this,

This repeal was the fulcrum of the free-market agenda, since this long-standing duty compelled the minister to allocate resources according to need instead of leaving allocation to market forces and unaccountable organisations.

Theirs, the seventh chapter of the book is the clearest statement of why it is so important to defend a publicly funded and provided, planned and accountable National Health Service, and is a good place to start for anyone still wondering what all the fuss is about.

Stephen Dorrell, past Conservative Health Secretary and present chair of the Health Select Committee was right when he said that the NHS reforms were revolutionary because of the £20bn cuts to funding by 2015 – unprecedented in any national healthcare system anywhere in the world and evolutionary because they continued the process of privatization that started roughly thirty years before. The long view is shared by the contributors to NHS SOS most of whom have been working in and campaigning for the NHS for long enough to harbor no illusions that this is a problem merely of the coalition’s making. One of the contributing editors, Raymond Tallis notes in his introduction that conservative Ken Clarke said in 2008,

Labour secretaries of state have got away with introducing private sector providers into the NHS on a scale which would have led the Labour Party onto the streets in demonstration if a Conservative government had ever tried it. In the later 1980s I would have said it is politically impossible to do what we are now doing. I strongly approve.

The righteous anger that comes across in NHS SOS comes from the knowledge that the reforms will punish the poor, the elderly and the chronically sick and will harm the rest of us when we are most vulnerable. I’ve recently been studying medical professionals’ accounts of their own illnesses. What is particularly striking is just how vulnerable they feel. Serious illness is unpredictable, frightening and exhausting, decisions that seem clear when we’re feeling healthy and confident are anxiety provoking and sometimes overwhelming when our own precarious health is at stake. No amount of re-branding patients as consumers, nor the rhetoric of patient choice used to justify the reforms can change this.

This book is not so much a lament for the NHS as it is for democracy.  Democracy, the contributors of NHS SOS argue in painstaking detail, is in crisis, from political parties to unions and academic royal colleges and the media; all are charged and found guilty – there is too much lobbying, too many vested interests, and amongst those uncontaminated by these sins, too little understanding of what is at stake.

It is all too easy to feel dismayed by what has happened and is happing to our NHS, but the strength of the book, and something that comes across strongly if you are lucky enough to hear any of the contributors talk – and they are all still campaigning, is their indefatigable and contagious passion for genuine public engagement upon which a national health service that puts patients before profits depends. The final section of the book is a guide to ‘What you can do to save the NHS’. In essence it’s a guide to how to become a politically engaged citizen. It would appear that we are only going to be able to save the NHS if we can save democracy while we’re at it.

Other reviews:

Guardian

Socialist Health Association

Open Democracy

NHS Managers