The Wounded Healers

John barely noticed the rain that soaked through his expensive shoes and made his cigarette smoulder. Lisa’s pink fur slippers soaked up the rain like sponges but her feet were warm enough. Anna stood more comfortably between them in brown suede boots, as they leaned over the railings in front of the Accident and Emergency department gazing blankly through the rain. Ambulances rolled in almost silently, lights flashing, sirens off. It was raining less heavily than it had during the day, but it made the darkness feel closer. They smoked in silence. Across the car park, they could see the glows from near the gates, where those inhaling more pungent substances huddled together, occasionally sharing their smokes with the security guards.

The rain tapped on the windows as lights pulsed from machines that pipped quietly in the night, controlling the drip of fluids in and data out of Sally’s arms. She looked peaceful now, so different from when her ambulance rushed her in this morning. John had watched helplessly, banished to the side-lines as paediatricians and anaesthetists worked their way through their protocols. Watching was unbearable, and not only because it was his own child being stabbed repeatedly with needles, masked, bound and gagged, blooded and drugged, which is of course the brutal reality of what happens when emergency care meets serious illness. Worse was watching the blundered cannulations, the repeated transgressions of aseptic technique, the delays in administering drugs, the failure to find the right piece of equipment, the delay in summoning the consultant, the arguments about whether to transfer her to another hospital. This was unbearable.

On one of the wards one of the nurses had left her evening medication round to help a distressed and demented patient, “Somebody’s stolen my slippers!” the old lady wailed and other patients called out to tell her to be quiet. The drug trolley was left open and unsupervised as together they looked under her bed. Nearby, they noticed a little pool of intravenous fluids dripping onto the floor. Lisa’s bed was empty. In the treatment room, the ward manager and senior sister argued in hushed, but heated voices about forty milligrams of morphine that had gone missing that afternoon.

Calls from patients were stacking up slowly in the out of hours GP co-op, located in an annex to the A&E department. By this time, most people had given up on finding a cure for their symptoms before Christmas day and were prepared to wait until at least after the turkey and mince pies. A late cancellation by another doctor whose daughter had been admitted to hospital meant that the night shift needed filling at just a few hours’ notice. Anna had volunteered with barely a thought. It paid well, but she didn’t need the money, she did it because they needed her. She got a faint glow of satisfaction when her manager called her straight back to express her gratitude, but she shrugged it off, she was only doing her job. The same feelings of satisfaction she used to get from grateful patients barely registered any more. She wondered why.

It was impossible to recollect clearly what had happened that morning. Sally had been feverish all night and had to be woken up. They were late for her ballet class and John had been irritable and impatient getting her ready. Of course he hadn’t performed a clinical examination, he was her dad. Like a hundred or more children he had seen at work that week he’d felt sure it was ‘just a virus’. Once, about a year ago, when her younger brother had burned himself, Sally had told her father to take him to the doctor. ‘But it’s ok, daddy’s a doctor’, he had said in his reassuring, doctorly voice. ‘No’ she replied firmly. ‘You’re not the doctor, you’re daddy’. He related this to his colleagues at the time and one by one they out-did each-other with tales of broken bones, metabolic disorders, and overwhelming infections that were left way beyond what they would expect or hope from their patients. He imagined how outraged Sally would be to hear them.

Lisa left her flat in the early hours of the Friday morning. She cannot remember quite what she had intended, but imagined that she’d gone in search of something else to drink or something to jump off. Until ten days before, she had managed to continue working without fault, as the senior clinician in her department. She noted with some satisfaction that in spite of drinking the best part of a bottle of gin a day for the last 2 months she still performed better than her colleagues. An invitation to apply for the post of clinical director, almost unheard of at her age, sat with a star on it among her emails to be dealt with. Drinking, in her mind was about testing boundaries, she liked messing with her head. Her mother had schizophrenia and coped remarkably well with it and was a successful geneticist, researching her own condition – what else? Lisa explored her mind in other ways, experimenting with hallucinogenic drugs in adolescence and at medical school and then, in the interests of trying to understand what her patients had to go through, tried all the different psychiatric drugs she was expected to prescribe for her patients.

Anna’s husband and kids would all be in bed by now. She had meant to call them, but didn’t think to stop and have a break until it was too late. They were pretty understanding really, they had to be with a doctor for a mum. She wondered whether other families were less forgiving, made their medical relatives feel guilty about the all the time they spent at work, the unsocial hours and unscheduled shifts. The kids had protested in their own way, when they scrawled with crayons across the calendar, ‘mum’s at work, mum’s at work, mum’s at work …’ She had tried to make it up to them by bringing presents home after spending last weekend at a conference, but they had taken the presents and ignored her. She felt cold as she thought about it. It wasn’t just the December rain.

By 6 years of age Sally was already showing precocious talents at whatever she, or more accurately, her parents, chose. John had always felt that he could have done a lot more with his life and didn’t want Sally to grow up, plagued by his regrets. None of his family had been to university and his parents had been incredibly proud, if a little bemused when he managed it. He chose medicine, a little half-heartedly, ‘to keep his options open’. At the time, he saw it as serving an apprenticeship and having a trade to fall back on, but what he really wanted was to play football, or the guitar. A medical degree was just supposed to be insurance, but gradually, medicine took over his life. John the centre-forward and Jonny the lead guitarist were subsumed by Doctor Davis the A&E consultant. He had recently lost interest in watching football or listening to music as the stars grew ever younger and reminded him of what was no longer possible.

Lisa’s childhood had a mixture of benign neglect or liberal laissez faire and she was naturally adventurous and talented. She found success wherever she applied herself and not infrequently in places where she didn’t try. She entered medicine because she thought it would be a challenge, but found her peers intellectually dull and unsophisticated with the exception of a clique who seemed destined for psychiatry. She had a natural affinity for her work, and an easy empathetic way with patients and staff, and progressed quickly in her academic and clinical roles. She was an obvious choice to run the sick doctors programme. She quickly became very close another psychiatrist with schizophrenia who she had for a long time admired. Their professional relationship was bound by the strictest confidences, but they shared a rebellious desire to test boundaries and experiment not only with medications but their roles.

Anna’s parents separated when she was twelve, just after her mother’s second breast cancer. She never forgave her father for abandoning them after everything they had been through, while her mother was in the depths of depression and undergoing palliative chemotherapy. She cared for her mother for the last year of her life and knew from then on that she was destined to be a doctor. She quickly became disillusioned by how impersonal and scientific medical education was, compared to her experiences with her mother and the doctor she wanted to be. She wanted to right the wrongs, to re-humanise care, to make doctors talk honestly with patients and families about death and dying, to admit when care was futile, not to abandon them at their time of need. She found her home in palliative care and general practice, where she had time to build up relationships with patients. By drawing on her own painful experiences she discovered her gifts for empathy and caring.

 

We have made virtues of independence and objectivity, though it is where lives intersect that medicine is practiced. We teach doctors about clinical depression but very little about human misery and we teach them how to treat cancer but next to nothing about how to deal with the fear of death. We train doctors to be scientist problem solvers, viscera-mechanics rather than holistic practitioners who will sooner or later discover that what ails the body also ails the soul.[i] In part this is because medicine has provided us with a taxonomy of suffering according to whether it can provide diagnostic proof, therapeutic intervention or profits. What falls outside is none of our business, in the widest sense of the word. We propagate a medical persona, individually and collectively internalised, that unlike our patients we are healthy, resilient, rational and indefatigable.[ii] We proudly display our passports for the kingdom of the healthy, because secretly, we believe that the kingdom of the sick is a punishment for weakness of the will, lack of stamina or moral torpitude.[iii] [iv] Little surprise then that for too many doctors, death is preferable to being seen to be vulnerable or weak.[v] Ours is a one-way mirror, designed to protect us from our own suffering and vulnerability, but allowing us to look right through it and see in others what we fear in ourselves.

 

As they turned to go back to the hospital, they caught sight of one-another for the first time. There was something familiar about the mixture of sadness and determination. The roots perhaps of their vocation.

 

Further reading:

The Bad Doctor: The Troubled Life and Times of Dr Iwan James. Brilliant comic book delving deep into the life of a GP.

The Emotional Labour of Care

Do Doctors need to be kind?

References

[i] Kennedy I. Reith Lectures: 1980 Unmasking Medicine Lecture 2: The New Magicians

[ii] Zigmond D. Physician Heal Thyself: The Paradox of the Wounded Healer http://www.marco-learningsystems.com/pages/david-zigmond/physician-heal-thyself-3.htm accessed 28/02/2014

[iii] Sontag S. Illness as Metaphor and AIDS and its Metaphors. Penguin Books 1983

[iv] Wallace J. Mental Health and Stigma in the medical profession. Health (London) 2012 16: 3

[v] http://www.kevinmd.com/blog/2014/02/doctors-commit-suicide.html Accessed 28/03/2014

Transforming the culture of healthcare: Sick doctors and the GMC

Originally posted on the Centre for Health and the Public Interest

 

Two recent reports from Civitas and UK and international researchersabout the treatment of doctors under investigation by the GMC raise very serious concerns. Their findings can be summarised in a quote from recent chair of the Royal College of GPs, Clare Gerada, in her capacity as a director of the Practitioner Health Programme – an organisation that provides confidential care for sick doctors:

‘The GMC is “traumatising” unwell doctors and may be undermining patient safety.’

Doctors are traumatised by a lack of support and help with personal illnesses, intimidating communications, and excessively prolonged and poorly handled investigations.

 

Few doctors would seriously doubt that investigation by the GMC is extremely stressful. A powerfulpersonal account from Dr Shibley Rahman illustrates the devastating consequences of a failure to provide support during an excessively prolonged investigation of an obviously sick and vulnerable doctor. Ninety six doctors died while under investigation by the GMC between 2004 and 2013. It is likely that some of these deaths were suicides but an investigation announced by the GMC last September has yet to be published. The Civitas report concludes that the GMC and NHS employers are failing in their duty of care to sick and vulnerable doctors and this is a risk to the safety and quality of patient care.

 

Nevertheless the report leaves out a lot of evidence that can strengthen their case for reform. Just culture and patient safety, kindness and compassion and patient-professional partnerships are vital components of a culture of care that includes both patients and professionals. Doctors’ health is threatened not only by the regulatory and disciplinary culture of the GMC but also a pernicious regulatory, target-driven NHS culture and the pressures of ever-increasing workloads in a climate of inadequate funding, under-staffing and increasing competition.

Just culture

 

A just culture is one in which people are not afraid to admit mistakes because they are confident that they will be dealt with fairly. Recommendation 86 of the 2001 Bristol inquiry states:

‘The culture of blame is a major barrier to the openness required if sentinel events are to be reported, lessons learned and safety improved.’

The Francis report 2013 quotes Liam Donaldson:

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.

The Berwick report into patient safety begins:

‘Abandon blame as a tool, NHS staff are not to blame – in the vast majority of cases it is the systems, procedures, conditions, environment and constraints they face that lead to patient safety problems.’

When airline pilot Martin Bromiley’s wife died in 2005 during a routine operation he wanted to find out what happened:

‘…he assumed that the next step would be an investigation – standard practice in the airline industry after every accident. “You get an independent team in. You investigate. You learn.” When he asked the head of the intensive-care unit about this, the doctor shook his head. “That’s not how we do things in the health service. Not unless somebody complains or sues.” ‘

This captures so much of what is wrong with how we deal with errors and complaints. Bromiley set up the Clinical Human Factors Group with just culture at its heart.

 

The ability of patients to speak up and share their concerns about care is also vital for safety and they need to be able to express their concerns, and complaints if necessary, without contributing to an adversarial culture. The GMC at present is contributing to an adversarial culture in which doctors are afraid to admit their mistakes.

 

Doctors as victims

 

The emphasis in the Civitas report is on doctors as victims, not only of the excessive and bungling efforts of the GMC, but also of vexatious patients or employers, an intrusive and salacious media, and unaccountable users of social media and feedback websites. We should be very wary of implicitly blaming patients. On page 11, they claim that the rhetoric of patient entitlement and choice has contributed to ‘a massive escalation in cases dealt with by the GMC‘.

 

A report from Plymouth University commissioned by the GMC showed that complaints are fuelled by traditional media’s portrayal of ‘bad doctors’ and facilitated by social media. They describe the considerable public confusion about complaints procedures that is leading to complaints being made to the GMC that ought to have been dealt with locally without escalation. In common with the Civitas report, they found ‘a general perception that the nature of the doctor-patient relationship has changed, with patients becoming less deferential, better informed and more willing to question the care they receive.’

 

The authors of the Civitas report appear to view this as a threat (page 33/34), rather than an opportunity. There are a considerable number of doctors like myself and patients who use social media to challenge one another and the wider goals of medicine and health policy in a spirit of enthusiastic curiosity. There are vigorous and encouraging debates challenging medical paternalism and the notion of doctors as victims. The Kings Fund and the BMJ are doing excellent work with patients as partners. Shared decision-making between patients and professionals is not only a philosophical/moral position that challenges medical paternalism, but has a rapidly growing evidence-base and an NHS websitePatients’ preferences matter and so does good communication.

 

The rose-tinted view of the competent, skilful doctor who ‘lacks empathy and wastes little time on social niceties‘ as the innocent victim of unreasonable complaints (page 33) doesn’t stand up to the evidence above linking good communication with appropriate clinical decision making, nor the importance of kindness in care. Patients have every right to want to be treated kindly and involved in decisions about their care and doctors (even older, male surgeons) can do this.

 

Wider cultural issues

 

The extent to which the activities of the GMC are responsible for doctors’ distress is important and under-appreciated. The authors of the Civitas report are absolutely right to draw our attention to the sad fact that the GMC is not providing support where is needed and is almost certainly contributing to the problem. Nevertheless there are many other important reasons for doctors’ distress at present, some of which will increase the likelihood of a doctor being reported to the GMC.

 

Surgeons and physicians who make errors are badly affected even without being investigated. They tend to blame themselves and are more prone to burnout and future errors. Burnout is a serious issue among doctors, and recruitment to general practice has reached crisis point. The government policy of naming and shaming GPs who are below average in diagnosing cancer adds to our despair. Increasing competition at a time of austerity in hospitals leads to them being castigated for ‘failing’, leading to a spiral of decline, demoralisation, and cultural drift. Work pressures and poor management identified after Mid Staffs remain a serious cause of stress and illness for many NHS staff who are under increasing pressure to work when they feel unwell. All these factors are undermining the good health of professionals on whom patients depend.

Conclusions

 

It is essential that patients are protected from doctors whose behaviour puts them at risk, but we need better preventive as well as treatment measures and we need to minimise the harms when GMC involvement is necessary. Professional isolation and a lack of insight correlate well with under-performance and better support and teamworking, for example through coaching and mentoring can help.

 

This is a very important report with implications far wider than the treatment of individual doctors by the GMC. It is the interests of patients that doctors caring for them are cared for themselves. Added to evidence about just culture, patient safety, kindness in healthcare and doctor-patient relationships – this should prompt a significant cultural shift towards much more compassionate relationships between institutions, professionals and patients which will benefit us all.

 

Further reading

Ballatt J, Campling P. Intelligent Kindness: Reforming the Culture of Healthcare. RCPsych Publications 2012

Anthony Cooper QC to probe GMC investigations of former whistleblowing doctors. HSJ 01.08.2014

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”

Update

16/10/2014 Prescribing of antibiotics by GPs in England fell by 4.5% between 2012 & 2103. https://www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report

05/08/2014: Public Health England study into antibiotic prescribing in General Practice 

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