The only normal person I know.

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

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

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

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

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

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

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

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

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

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

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

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

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

RCGP Put Patients First Campaign.

BMA Your GP Cares

 

 

 

 

Medicine and social justice? plus ça change …

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

Rudolf Virchow 1848

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

Bernard Shaw. Preface to A Doctor’s Dilemma 1909

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

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

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

Henry Sigerist 1941

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

Ian Kennedy Reith Lectures 1980

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

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

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

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

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

The Marmot Review 2010

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

General Practitioners at the deep end.  Glasgow University 2013

 

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

To clarify my position,

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

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

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

 

Further reading:

Medical Advocacy

A Perfect Storm: Welfare meets Healthcare

 

4 Problems

Published first on BMJ blogs

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

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

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

“I’ve made a list”

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

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

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

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

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

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

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

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

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

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

I smile.

“What was the prescription you needed?”

“My pill”

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

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

I lie.

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

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

I feel bad about lying.

I tell her the truth.

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

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

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

But I don’t.

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

“There was one more thing” she says.

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

I can’t let it go.

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

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

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

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

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

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

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

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

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

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

Patient centred care: Rhetoric and reality

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Further reading:

The Importance of Knowing patients

Patients, customers, clients or consumers?

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

Knowing one another

406px-Francisco_Goya_Self-Portrait_with_Dr_Arrieta_MIA_5214

Goya: Self Portrait with Dr Arrieta

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Moral luck, agent regret and the doctor as drug.

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

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

“There’s a little boy under the car!”

My heart stopped.

Where’s Billy?

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

“There’s a little boy under the car!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Further reading

 

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

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

 

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

 

[4] Moral Luck. Internet Encyclopaedia of Philosophy

 

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

 

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

 

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

Care dot data

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

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

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

Address: 30 Chester House. Hoxton N1 5HL

Ethnicity: white British. Religion: Catholic

Problem: Type 2 diabetes

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

No previous DKA/ last HbA1c 7.9

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

Results: Alcohol consumption 69 units/ week

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

Problem: Bereavement.

History: see under T2 DM entry

Problem: Moderate depressive episode

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

Results: PHQ9 18

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

Problem: Essential hypertension

History: see entry under T2DM

Results: BP 140/80

Problem: Tinnitis

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

Examination: ear canals clear, Webers/Rhinnies symmetrical.

Referral: Audiology

Active medications:

Acute:

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

Repeat:

Metformin 500mg. Take 2 tabs bd

Amlodipine 10mg. Take 1 tab od.

Ramipril 5mg. Take 1 tab od.

Atorvastatin 10mg. Take 1 tab at night.

Allergies: Penicillin

Recent results: 12/02/2014

Hb A1c 7.9 (marker of diabetic control)

Cholesterol 3.9

Creatinine 110 (marker of kidney function)

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

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

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

Potential risks.

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

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

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

Insurance companies.

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

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

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

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

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

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

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

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

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

Update 25/02/2014

Unanswered questions via Bengoldacre today:

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

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

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

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

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

Links:

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

NHS Choices

Care data leaflet

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

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

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

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

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

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

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

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

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

Dr Neil Bhatia. GP website about care.data

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

Alcohol unit calculator.