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

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

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

Contexts

 

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

 

Methods

 

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

 

Observations

 

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

 

 

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

 

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

 

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

 

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

 

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

 

How we treat patients

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Loss of identity.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

Shame and Stigma

 

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

 

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

 

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

 

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

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

 

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

 

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

 

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

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

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

 

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

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

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

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

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

Being treated as a person

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

Mistakes and magic.

 

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

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

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

 

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

 

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

 

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

 

Teaching and learning.

 

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

 

Future prospects.

 

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

 

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

 

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

This essay is dedicated to Kate Granger.

References.

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  23. Granger K. The Other Side. 2012
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  26. Kieran Sweeney interview. http://youtu.be/3TignNvHNx4 (accessed 14 March 2014)
  27. Lawrence R. Psychotic Depression. BMJ 2012;345;e6994
  28. Loneliness and Isolation Evidence Review for Health Professionals. Age UK. 2010
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  30. Sontag S. Illness as Metaphor and AIDS and its Metaphors. Penguin Books 1983
  31. Lawrence R. A Patient’s Journey. Psychotic Depression. BMJ 2012;345:e6994
  32. Polkinghorn C. Doctors go mad too. Royal College of Psychiatrists http://www.rcpsych.ac.uk/pdf/Doctors%20Go%20Mad%20Too.pdf (accessed 14 March 2014)
  33. Shooter M. Jones P. Doctors as Patients. Radcliffe Publishing Ltd 2005
  34. Beyond Blue launches world-first doctors mental health survey results. http://www.beyondblue.org.au/about-us/news/news/2013/10/07/beyondblue-launches-world-first-doctors-mental-health-survey-results (Accessed 13 March 2014)
  35. Henderson M. Brooks S. Shame! Self stigmatisation as obstacle to sick doctors returning to work. A qualitative study. BMJ Open 2012;2:e001776
  36. Kay M. Mitchell G. Doctors as patients: a systematic review of doctors’ health access and the barriers they experience. Br J Gen Pract. 2008 July 1; 58(552): 501-508
  37. Garelick A. Doctors’ health: stigma and the professional discomfort in seeking help. The psychiatric bulletin 2012;36:81-84
  38. Anon. Cancer Journey. Bullet Proof Cardie. Blog. http://bulletproofcardie.wordpress.com/2013/11/04/cancer-journey/
  39. De Longh. Getting my head around functional neurological symptoms. The Patient Patient Blog. http://thepatientpatient2011.blogspot.co.uk/2014/01/getting-my-head-around-functional.html
  40. Chapple A. Ziebland S. et al. Stigma, shame and blame experienced by patients with lung cancer; qualitative study. BMJ 2004;328:1470
  41. Peabody F. Care of the Patient. JAMA Vol. 88, pp. 877-882, Mar.19,1927
  42. Jiwa N. A Hungry Patient is a Grumpy Patient. Bulletin of the Royal College of Surgeons of England. Volume 96, Number 3, March 2014, pp.78-79(2)
  43. De Longh A. About the Patient Patient. The Patient Patient blog: http://thepatientpatient2011.blogspot.co.uk/p/about-patient-patient.html
  44. Swinglehust D. Greenhalgh T. et al. Computer templates in chronic disease management: ethnographic case study in general practice. BMJ Open 2012;2:e001754
  45. Granger K. Painting the Picture. Dr Kate Granger Blog http://drkategranger.wordpress.com/2013/08/04/painting-the-picture/
  46. Granger K. Healthcare staff must properly introduce themselves. BMJ 2013; 347
  47. Campaigning doctor to speak at Health and Care Innovation Expo 2014 http://www.england.nhs.uk/2014/01/22/kate-granger-expo-2014/(accessed 14 March 2014)
  48. When Doctors Become Patients. New York Times. http://well.blogs.nytimes.com/2008/02/08/when-doctors-become-patients/?_php=true&_type=blogs&_r=0 (accessed 10 March 2014)
  49. Murray K. Doctors really do die differently. Zocalo Public Square. http://www.zocalopublicsquare.org/2012/07/23/doctors-really-do-die-differently/ideas/nexus/ (accessed 14 March 2014)
  50. Donald A. From the other side. BMJ Blog http://blogs.bmj.com/bmj/category/from-the-other-side/ (accessed March 14 2014)
  51. Farrell L. The Professional Path to Recovery. Irish Medical Times http://www.imt.ie/features-opinion/2013/07/the-professional-path-to-recovery.html (accessed 14 March 2014)

 

 

 

 

 

The only normal person I know.

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

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

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

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

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

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

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

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

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

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

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

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

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

RCGP Put Patients First Campaign.

BMA Your GP Cares

 

 

 

 

Medicine and social justice? plus ça change …

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

Rudolf Virchow 1848

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

Bernard Shaw. Preface to A Doctor’s Dilemma 1909

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

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

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

Henry Sigerist 1941

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

Ian Kennedy Reith Lectures 1980

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

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

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

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

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

The Marmot Review 2010

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

General Practitioners at the deep end.  Glasgow University 2013

 

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

To clarify my position,

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

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

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

 

Further reading:

Medical Advocacy

A Perfect Storm: Welfare meets Healthcare

 

4 Problems

Published first on BMJ blogs

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

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

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

“I’ve made a list”

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

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

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

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

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

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

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

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

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

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

I smile.

“What was the prescription you needed?”

“My pill”

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

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

I lie.

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

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

I feel bad about lying.

I tell her the truth.

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

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

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

But I don’t.

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

“There was one more thing” she says.

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

I can’t let it go.

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

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

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

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

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

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

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

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

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

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

Patient centred care: Rhetoric and reality

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Further reading:

The Importance of Knowing patients

Patients, customers, clients or consumers?

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

Knowing one another

406px-Francisco_Goya_Self-Portrait_with_Dr_Arrieta_MIA_5214

Goya: Self Portrait with Dr Arrieta

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Moral luck, agent regret and the doctor as drug.

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

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

“There’s a little boy under the car!”

My heart stopped.

Where’s Billy?

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

“There’s a little boy under the car!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Further reading

 

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

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

 

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

 

[4] Moral Luck. Internet Encyclopaedia of Philosophy

 

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

 

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

 

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