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?’
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?’
“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 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:
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”.
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.
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.
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)
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.
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.
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.
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.”
“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.”
“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.
How to respond to the recently bereaved. DocMum blog.
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.
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.
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:
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?
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.
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.
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.
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.
“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.