Listening and learning from people living with dementia

Peter

My father at his 79th birthday in 2012

Earlier this month, I was invited to Elizabeth Bartlett’s house in Salisbury. Funded by Wiltshire council, she holds weekly experiential memory support groups for people with dementia and their carers. We were warmly invited with tea, coffee and biscuits and then divided into two groups, one –  for the people with dementia facilitated by Elizabeth and one for the carers, facilitated by her husband John. I spent 45 minutes with each group. They meet to share their experiences of living with dementia and living with people with dementia.

I was invited partly because my parents have been going to the group for the last few months and finding it incredibly supportive, but also because of my enduring professional and recent academic interest in the relationships between doctors and patients. The carers especially, were hoping that I would be able to share their concerns and experiences with other GPs and medical students.

Context matters.

Patients, on the whole, are afraid to criticise their own GP in person. Too much hinges on good relations, and rather than confront each other when things go badly, they tend to go elsewhere. There are of course, exceptions. All GPs, myself included get complaints and not infrequently, doctors and their patients fall out for a while and get back together again. I bring this up because one of my first impressions was that we had the kind of frank conversations that I probably would not have had with my own patients or even patients from my own surgery or even perhaps in a healthcare setting. Being in Elizabeth’s home and being in groups, which had a self-evident camaraderie gave their members greater confidence to speak out, uncovered shared experiences and changed the balance of power.

It mattered also that I was there to listen to the groups talk about their experiences. I wasn’t there to give advice, make a referral, review their medication, or do anything. I was conscious of the importance of listening and Dr Iona Heath’s remarkable essay, The Art of Doing Nothing. This morning I read through my medical students’ learning objectives and realised that even from the second year at medical school there is more emphasis on the advice they’re expected to give patients than the depth of understanding they’re expected to gain about their experiences. I’ve been trying hard to subvert this, but students are understandably focused on stuff they expect to be examined on.

Getting lost.

I began with the dementia group. One of the new members said that after she had passed the GP’s dementia test her daughter complained, ‘but mum, that’s because you’re so competitive!” I remember my father’s delight at passing the more sophisticated Adenbrooke’s dementia score. I wondered whether he might have been diagnosed earlier if the psychologist had come over for a family meal or sent him out with a shopping list. We would have happily cooked or suggested some groceries.

Both the dementia group and the carers said that getting lost was one of the first things they noticed. One of the carers told us that her husband got lost and wandered into a hotel in Salisbury where the staff made him a cup of tea and offered to get a taxi to take him home.  When he could not remember where he lived the hotel staff asked the taxi driver to drive him around until he recognised his home, which, before long, he did.  His very grateful wife offered to pay the taxi driver but he told her he had already been paid by the hotel and it had been a pleasure to help. Getting lost, and having trouble with shopping lists, was often apparent before problems with memory or confusion.

Familiar tasks and familiar places may be much easier and mask dementia. The brother of one of the group who has a rare form of early-onset dementia was working as a GP when he was diagnosed with dementia. He was still competent in his work and loved by his patients but had to retire. Many of his patients protested and said they didn’t care!

The importance of a diagnosis and fears about screening.

Everyone, in both groups agreed that a diagnosis helped a great deal. For most, but not all, the relief exceed the anxiety about prognosis, but for those with an earlier onset dementia, for example Pick’s disease, it was a great worry. Some of the carers and those with dementia had been upset by GPs that had dismissed or tried to normalise their concerns as forgetfulness. One carer recalled their GP saying, “Oh my father’s like that, it’s just old age’. They were equally disturbed by the thought of unsolicited dementia screening and thought that older people had been afraid that their GP might use any opportunity to diagnose them with dementia. They were, on the whole, relieved that the planned NHS screening programme had been dropped but felt strongly that someone coming to their GP with concerns about dementia should be taken seriously. Doctors, like everyone else, are value-laden and some believe that forgetfulness is normal or that trying to diagnose dementia in its early stages is futile or impossible. Before my father was diagnosed, I pushed for a diagnosis, but I pushed too soon, he wasn’t ready and I over-reacted after that, thinking that an early diagnosis was futile and harmful. Both groups and I confessed many GPs, shared concerns that even the most sophisticated tests for dementia can be unreliable but it shouldn’t stop us trying to find what’s causing worrying symptoms. Time, attention and re-testing are all important. Those with dementia, whose symptoms were incredibly diverse, wanted me to know that dementia wasn’t just forgetfulness. “We’re all different”, they said, almost in unison. It is often said that if you’ve met just one person with dementia, you’ve met just one person with dementia.

Better relations between doctors, patients and carers.

We talked in both groups about how to improve relations with GPs and I told them that I have found Atul Gawande’s questions from his new book, Being Mortal, slightly modified, incredibly useful. They make other discussions about care so much easier.
(1) What is your understanding of your health or condition?
(2) What matters to you?  Examples might be, staying at home, staying out of hospital or a nursing home, Staying alive long-enough to see your children marry or your grandchildren graduate,  Being able to see your friends, Having the trip of a lifetime, Keeping your interests going as long as possible.
(3) What are your fears? Examples might be; being in pain, getting lost, not getting to the toilet in time, falling over, being alone, dying, not recognising your spouse/ children etc.
(4) What trade-offs are you are willing to make and not willing to make? For example will you do anything to live longer? Take any amount of medication?Spend any amount of money? Take any risks? Where might you draw the line and why?

I think after speaking to the carers today that they are useful questions for a carer to ask the person they care for and to ask themselves. I think doctors should ask them too. I’ve written a blog about how to make sense of risk and what to ask (or tell) your doctor here. In it I suggest that if your doctor doesn’t think to ask these questions it would be really helpful (from my GP perspective) if someone came along to tell me what they thought about them.

I think it’s important to let the person who is affected to answer them. Apart from the obvious fact that it’s their life we’re talking about, it is also, on the whole, much harder for families to let go. In Gawande’s book he notes that about 2/3 of patients with cancer are willing to undergo treatment they don’t want, if their families want them to. In neurosurgeon Henry Marsh’s incredible book, Do No Harm, he gives an example of a young man with a serious brain injury with little hope of survival. He explains that you can ask the family the same question in one of two ways, “What would you like us to do?” or “What do you think your son/husband/brother would want us to do?” The way the first question is phrased you’re asking, “Do you love him enough to care for him after we’ve operated and he’s severely disabled with no hope of recovery?” The second question lifts that burden of responsibility, yet you can love him still.

Thinking about care and carers.

I think the physical, social, economic, emotional etc. burdens of responsibility on care-givers – who are mostly women, unpaid and under-supported, are enormous and without a doubt under-appreciated. The emotional labour of caring for someone with dementia can be enormous. Psychiatrist/ anthropologist Arthur Kleinman writes beautifully about the nature and moral responsibility of caring for his wife with dementia,

My own experience of being the primary caregiver for my wife, on account of her neurodegenerative disorder, convinces me yet further that caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge

The conversations reminded me that I don’t think I am very good at thinking about care. A doctor’s work is mostly diagnosis and treatment, but surprisingly little involves care. One can be caring, but the physical work of care goes on out of sight of many, perhaps most doctors. Kleinman explains that from his experience he has learned that it’s almost impossible to appreciate what goes on if you’re not physically and emotionally involved in giving care yourself. In GP Dr Margaret McCartney’s book, Living with Dying, she describes how the emphasis – driven by healthy young men in policy, politics and research, is driven towards drugs and technology, which diverts resources and attention away from the immediately necessary human support that people need. The carers reminded me of how important it is that GPs care about the carers and one of them told me about someone she knew who committed suicide because of the stress of looking after someone with dementia. I was ashamed recently when a podiatrist form the local foot clinic wrote to tell me that the daughter of one of my patients with dementia cried at his appointment as she talked about how stressed she was. Even though I’d seen her with her father many times before, I really hadn’t paid enough attention to how she was coping. I called her and we met later the same day and I listened to how she struggled to cope. I don’t think I did anything much beyond listen sympathetically, but I am sure that it helped that I knew what she was going through.  It’s important for GPs not to take what patients and carers say at face-value. They want to put on a brave face and want desperately to be seen as coping. As a GP I’d want to validate that but not miss the fact that they really might need help.

Continuity of care.

An issue that was shared between people with dementia and their carers was the importance of continuity of care. It was at least as important for the carers as it was for the people with dementia, because it mattered so much that the professionals involved knew something of the context in which they were living and caring with dementia. In my own practice of 12 part-time doctors and over 13 thousand patients we have, by hard work and determination increased the proportion of appointments where a patient sees their own doctor, from 50% to 80% in 2 years. If we can do it, so can other surgeries. We prioritise people who have long term-conditions for whom it matters most, but try to make it happen for everyone.

The conversations were especially valuable in part, because we were not in a hospital or GP surgery, where the balance of power leans towards the health professionals and participants are more reluctant to criticise those that are responsible for their care. Having a group of people with different experiences and different GPs allowed me to hear about how experiences shared and diverged, about good and bad. It’s easy for me, or any health-professional to assume that our way of working is typical, or that we know about patient experiences because we know our own patients, but this showed me how limited my own perspective can be.

Stepping out of my surgery and into Elizabeth’s house has taught me a lot about how living with dementia affects people and families, and about the importance of context, power and relationships and the nature of care. It was obvious that for those people living with dementia, like my parents, the group is incredibly supportive and I can easily imagine how much groups like this could help carers and people who are cared for, for whom loneliness and isolation can massively add to their work.

I think that health professionals in training and in practice could learn some profoundly valuable lessons from taking a seat among those we are here to serve, and listening to their concerns and their experiences.

The Case for Intelligent Kindness

Here is a link to a wonderful editorial by Penny Campling about the role of Intelligent Kindness in Healthcare. It’s the kind of thing I’d love to have written myself. Please take time to read it and share it.

The virtuous cycle of kindness:

IK

Editorial: Reforming the culture of healthcare: the case for intelligent kindness

by Penelope Campling

Narrative and reflection

Day 2 of Narrative and Medicine

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The first 2 presentations shifted the attention to the flip side of the narrative coin, reflection.

A narrative, in the context of a therapeutic relationship, demands a response. Morally we are duty-bound to act and the action begins with reflection. Reflection comes more naturally to some people than others, but, as the superb presentations this morning showed, reflection encompasses skills that can be taught, but to be of value must be practiced. This paper by Carmen Caeiro and Carla Pereira showed how a narrative reasoning course helped physiotherapists develop understanding of patients’ experiences and themselves as well as embedding reflective practices in clinical practice. I’ve highlighted the last bit because I think it’s of tremendous importance for medical education in general and medical ethics education in particular because reflective practice is embedded in most medical curricula with little evidence about what it’s doing or whether it continues into clinical practice. The power of the hidden curriculum, the culture that socialises professionals into ways of thinking and acting, is formidable. Reflective practices are subversive of culture because they equip professionals with the conceptual tools and deliberative practices that challenge established cultural norms. The presentation by Alan Weber about a narrative and reflective writing course in Qatar, bought this into a sharp perspective.The Qatari poet Mohamed Rashid al-Ajami was jailed in 2012 for 15 years for a piece of public reflection, a poem that criticised governments across the Gulf region in the wake of the Arab Spring uprisings. Alan’s students have grown up in a culture where personal reflection is discouraged and even to begin to teach the skills has been a huge challenge. By critically analysing safe subjects like arts and literature the students developed the confidence and critical skills which they were then able to turn on themselves, the practice of medicine and culture beyond. They chose to write reflectively about issues like virginity examinations, autonomy, sexuality and other taboo issues, some too dangerous to publish, though many of their essays have been published, albeit anonymously in three volumes. It’s easy for us to think about the Qatar students as being something ‘other’, we’re reflective they are not, we can write about controversial subjects, they can not but I was reminded of Rees and Monrouxe’s work with UK medical students’ professionalism dilemmas. They asked students write about unprofessional behaviour they witnessed, which included doctors inviting students to perform intimate examinations on anaesthetised patients without their consent and bullying of students and other professionals. Reports from Kirkup and Mid Staffs about dreadful, unprofessional behaviour should remind us that we have our own taboos which are being uncovered, but all too rarely discussed in a supportive, reflective setting, where something can be done before it’s too late. If we teach reflective skills and embed reflective practices – which as I argue in a forthcoming paper we should, it can help us challenge our own and others behaviour every day. It can undermine hierarchies and make professionals more sensitive to patients’ experiences. Reflective practices teach us humility and show us that there are multiple perspectives and help us reveal them, value them and judge them sensitively and seriously.

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Teaching reflective skills is not easy. When I go to the annual tutors’ day at Barts and the London it’s very common for tutors to admit their lack of confidence. Careiro and Pereira have both undertaken post-graduate studies in medical humanities at the university in Lisbon and involve sociologists and psychologists in their teaching. Their students have an 8 week course and read challenging texts by Kafka and Nietzsche as well as watching films like One Flew Over the Cookoo’s Nest and The Diving Bell and The Butterfly before each small group tutorial. The course was introduced into a new curriculum with the support of their university. For those of us working in long-established medical schools without their skills, replicating their work will be difficult, but far from impossible.

From Dr Interpretive to Dr Discursive

In Emmanuel and Emmanuel’s classic paper about four models of the doctor-patient relationship they describe an evolution from Paternalistic, via Informative and interpretive to discursive. One of the problems about narrative and medicine is that there is a tendency to get stuck on the interpretive. There is a lot of fascinating theory about how to interpret narratives. In the afternoon sessions we heard about narrative’s interpretive limits in a paper given by A. Sile about the book Exploding Into Life by Dorothea Lynch and her photographer partner Eugene Richards. The book, about Lynch’s experiences with breast cancer is illustrated with Richards’ photographs. Neither narrative nor image stand alone, both are different representations of Lynch’s experiences. Later, Richards who was a professional documentary photographer, said that he wouldn’t trust a photograph without text, and one suspects, text without a picture. I was reminded of UK artist Emma Barnard’s fantastic photographic portraits of patients who have had head and neck surgery for her patient as paper project. The photographs are presented on X-Ray acetates and then the patients are invited to respond by writing and drawing on their portraits. What she shows, beautifully and simply, is that patients can be represented in multiple forms by others and by themselves.

Medicine is, of course an interpretive practice, we interpret a medical history, signs and symptoms, blood tests and scan results, response to treatment and so on. And the things we interpret are themselves representations of the ‘thing’ we are trying to diagnose. Layer upon layer of representation and interpretation. Medicine is not a science, or even an interpretive science, though it is informed by science. It is, among other thing an interpretive practice. Kathryn Monrgomery, another narrative medicine pioneer has written about this in her book, How Doctors Think.

In the last paper I heard today, Briege Casey, who teaches a medical humanities course to nursing students in Dublin, described how established pedagogic practices such as Imagework by Iain Edgar and Ekphrasis can equip educators with simple tools to teach students sophisticated interpretive skills. With these we can help to teach wisdom and intellectual curiosity.

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She finished with a quote from one of her students that is of profound importance to anyone concerned with patient-centred care,

how would your patients choose to represent you?

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Keynote by Rita Charon

Narrative justice, competence and humility.

Day 1 of the Narrative Medicine conference in Lisbon.

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Details of the conference are here: http://narrativmedicin.wix.com/conference2015

This isn’t a comprehensive review for the most part because I struggled to keep up with the Portuguese interpreting, even though it was pretty amazing that they kept it up all day, in time with the speakers.

Narrative medicine is a branch of the medical humanities that has a particular power because clinical practice already begins with a patient’s history which is a natural space where narratives can be introduced. There is no equivalent for the visual or performing arts.  Medicine then shares its power selectively with the narrative medical humanities and we have conferences in beautiful places like the Calouste Galbenkian Foundation. It’s worth thinking about, but I’m not complaining. Not only because I’m here, but because I do find narratives very useful. More to the point, patients and families complain all the time that they are not given the opportunity to tell their story, their version of events, their interpretation of their symptoms, their experience of care, their fears and so on. Narrative medicine is the conceptual toolkit that enables this. It’s worth emphasising that this is not simply a matter of time, though that’s often the excuse that professionals give.

Taking a structured medical history is not the same as allowing a patient or carer (which is of increasing importance) to tell their story. I’ll be publishing a blog shortly about what people with dementia and their carers think about GPs … It’s a medical maxim that 80% or more of a diagnosis is contained in the patient’s history a figure that has barely changed in the last few decades of technological advance. And yet comparatively little close attention is given to what goes on when a history is given and received. Dinosaurs of the medical education establishment barely conceal their contempt for communication skills training and this rubs off on medical students who see it as fluffy and unscientific.

Applying scholarly rigour, Zsófia Demjen and Elena Semino explained how linguistics could reveal unappreciated aspects of the text of Henry’s Demons, a book written by a father and his son who has schizophrenia. Examples included the different types of language used to describe auditory hallucinations and how the overuse of the pronouns like ‘I, me and my’ were associated with a deteriorating mental state. Their analysis made me think that health professionals would benefit from listening more carefully to the way patients describe their symptoms and the words they use, and not just the factual content.

Narrative is not just about how we listen but how we read. E. Koopman interviewed readers who had differing experiences of depression, during and after they read 3 books about depression; The Bell Jar by Sylvia Plath, Mr Chartwell by Rebecca Hunt and The Noonday Demon by Andrew Soloman. What she discovered was that different texts affect different readers in different ways, which may seem obvious, but it is perhaps more of a concern if we think about why different doctors respond differently to a patient with depression. She showed that readers didn’t have to respond emotionally (or with empathy) to develop a deeper understanding of the experience of depression. I’ve long been sceptical about the possibilities of teaching empathy and this adds to my thoughts that it’s more important to teach medical students about how patients experience illness. Differences in the way they respond depend on their experience of depression and their intrinsic empathy, and to the way the depression narrative is told. How a patient might alter their narrative I’m not sure, but it does raise questions about narrative competence.

Narrative competence as commonly understood is the ability of professionals to be competent at taking a narrative history, but it is also how competent a patient is at giving their account. It’s essential for the professional to have narrative competence for the patient to be at ease and have sufficient trust in order to share their story, the professional must be a good listener and ask perceptive questions sensitively. But even with this (probably too rare) situation to start with, some people just aren’t very narratively inclined. Anthropologist Arthur Frank – one of the early pioneers of medical narratives, described some narratives as chaos and Galen Strawson argues that there are deeply non-Narrative people. Some people are natural story tellers, most of us know people who have ‘a gift’ for telling stories, others are masters or mistresses of poetry or literature. Some of us really struggle to find the words to describe our experiences and infants and those rendered voiceless by disease lack narrative competence.

If patients need narrative competence for narrative to ‘work’ then professionals need narrative humility to recognise that there are a usually several stories to be told, including their own, the patient’s, the carer’s, and any others who might be involved. The evening session with Alexandra Cheira, Cecilia Beecher Martins, Marijke Boucherie and Elisabete Lopes reminded me that narrative may be one of many means to justice. Philosopher Havi Carel whose work I’ve found to be extremely helpful  in everyday practice, united the speakers’ concern that health professionals do justice to patients in their capacity as knowers. Carel describes giving justice to their narratives as ‘testimonial justice’ but she also describes ‘hermeneutic justice’ in which patients’ interpretations are actively solicited and taken seriously. This need not involve narrative. Professor of general practice, Ed Piele has developed Values Based Practice in which patients’ and professional’s values are given serious attention and lead to another kind of justice. This session, like those that had gone before reminded me that for justice to be done, at the very least, there should be patients telling their own stories, or turning their analysis on professionals’ narratives and their use of patient narratives.

Nevertheless it is patients’ narratives that are central to this conference and I like to think that another early pioneer of narrative medicine, Arthur Kleinman, would be pleased.

Competition, choice and commitment

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Photo © Lee Jeffries flickr 500px

People who were least able to take advantage of competition and choice were,

less educated, less well-off, more likely to describe themselves as struggling financially, less likely to own their own home, less likely to have internet access, more likely to be disabled or a single parent.

They were also more likely to stick with providers with whom they had an established relationship.

They were identified in the Competition and Markets Authority (CMA) report on competition and choice between energy suppliers. Because of the associations between poverty and ill health these vulnerable people also stand to benefit least from competition and choice in healthcare.

Dr Smith was well past his due retirement, but was unable to find anyone to take over his surgery in a pretty rough part of town where he had been a single partner for nearly 40 years. His wife had been the practice manager until she had a stroke and then had to be cared for in a nursing home. He had been struggling to make money from the surgery for the last few years due to the cost of locum GPs and a locum manager. The building was desperately in need of repair. Dr Smith was tired and struggled to keep up with the paperwork, coming into work every weekend and staying late into the evenings. He hadn’t had a holiday in the last 3 years. He had survived his annual appraisals and revalidation by the General Medical Council and he was allowed to continue working even after the Care Quality Commission made a long list of recommendations after inspecting the practice. Like many GPs it was his considered opinion that the only things guaranteed by regulation and inspection were time taken away from patient care and low professional morale. Dr Smith was loved by many of his patients who known him for years and trusted him unquestioningly, though his treatment regimes were often out of date and he was tended to be pretty blunt.

One day, at work, Dr Smith had a heart-attack and died at his desk. When Dr Jones and partners took over his list, they found that the patients were more likely to be,

less educated, less well-off, more likely to describe themselves as struggling financially, less likely to own their own home, less likely to have internet access, more likely to be disabled or a single parent.

They were also more likely to be over 65 and have cognitive-impairment, learning difficulties or long-term mental illnesses. Other patients had changed GP long before Dr Smith retired. They didn’t need Friends and Family tests, NHS choices feedback, ‘I want great care’ or any other on-line rating system to recognise that the shabby waiting room and the ever-changing locum GPs weren’t ‘great’. But many of those that remained valued the long relationship that they had with Dr Smith and everything they had been through together. A fair few had been born at home and delivered by Dr Smith – twenty or thirty years ago it was common for GPs to deliver babies. He had cared for their parents and grandparents, their children and grandchildren. Personal care from a doctor they considered a family friend was of more significance than anything that could be measured and listed on a GP comparison site. According to the CMA report, energy consumers who valued long-term relationships based on trust and familiarity were also not served well by competition and choice.

The NHS is founded on the basis of equality and fraternity but liberty, as defined by competition and choice are new values for the NHS. ‘Liberating the NHS’ was the name of the 2010 government white paper that preceded the NHS Act, and the focus on liberty has increasingly eclipsed equality and fraternity. Competition and choice are enforced by a new NHS organisation called Monitor and strongly advocated by government advisers including Tim Kelsey, National Director for patients and information and Andrew Taylor, founding director of the NHS Competition and Cooperation Panel and now adviser to NHS providers on competition issues.

A situation where there is less transparency and no choice between providers cannot reasonably be defended, but questions need to be asked such as, What is the point of competition and choice in healthcare? Why must it be enforced? Who will benefit and who will lose out? What if patients don’t want to behave like consumers? What are the alternatives?

The point of choice is that it demonstrates respect for autonomy. Proponents argue that since quality between providers of care varies, patients have a right to know who is best so that they choose accordingly. They argue that if patients choose the best or cheapest providers then all providers will have to increase their quality or reduce their costs to stay in business. When choosing energy supply the cost is not the only consideration, though you wouldn’t know it from the CMA report. Other issues include ‘green energy’ and customer service and the confidence that comes with staying with an established provider.

When choosing healthcare, measuring quality is extremely difficult. Other factors like access, location, continuity or ‘customer service’ may be more important or even conflicting. For example, a service with better continuity of care – assuming such a thing is measured, may be hard to access. Quality, whatever that means, may not be the same as ‘what matters’, because what matters to a young mother joining a GP surgery may be very different for a working man with diabetes or a frail, elderly couple. ‘Choice’ when you are having a miscarriage, when you’ve broken your neck, when you have cancer or when you’ve got depression, hepatitis and diabetes all together or if you are housebound with severe agoraphobia and heart-failure may have very little to do with choice of healthcare provider and a lot to do with the quality of the relationships you have with health professionals. Leaving Dr Smith who has looked after you for 20 years because Dr Jones has got a better CQC report doesn’t make so much sense when you think about the importance of therapeutic relationships.

Healthcare is, for the most part, dependent on the quality of relationships between patients and professionals. It is interactional and cooperative. It is full of uncertainty about the nature of the problems and what should be done. More than ever it is about the care and support of patients with multiple long-term conditions in which long-term therapeutic relationships are most important. At other times care is for emergencies in which speed, not choice is key. Less often health care is transactional -for example when a patient has a clearly defined problem and is in need of a standard procedure for which outcomes are relatively easy to measure and relationships relatively unimportant. Here competition and choice may have value. But for most health care, the relationships between patients and professionals are both complex and caring and depend on mutual trust and respect and time to get to know one another.

Both the CMA and those directing health policy are of the opinion that the problems of choice and competition can be overcome by offering more choice and making it easier to choose at the same time as increasing competition. Underlying their bullish confidence is the morbid conviction that online league tables are more trustworthy than human relationships. Even more disturbingly, because choice and competition can be taken advantage of by the powerful far more easily than the vulnerable, the gap between them will be forced ever wider.

See also:

Competition, choice and quality in general practice

Patient centred care, rhetoric and reality

What’s the point of patient choice?

What’s in a name? Patients, clients or consumers?

High profile public reporting of quality doesn’t affect choice of maternity services

Making it up as we go along

Phil’s spinal surgery hadn’t gone well. From a self-defined 70% of full painless function, he was down to about 30% after the operation. We spent an hour talking and I was struck by how much the poor quality of the interpersonal, relational care was at least as much of a disappointment as the failure of the operation to improve his symptoms. He reminded me of General Practice Professor, Kieran Sweeney who complained, in tears, that while the transactional aspects of his care with cancer was faultless, the relational aspects simply were not.

Medicine is not solely a technical activity and pursuit, medicine is understanding and being with people at the edge of the human predicament.

He goes on to make the distinction between being cared for and being cared about. Those caring for him were kind and competent, but those who cared about him, went beyond this to find out what really mattered to him.

At the end of our chat, Phil (a friend, not a patient) asked if I would give a talk about doctors and patients at his shop, Cyclefit which runs public-lectures. Without either hesitation or thought, I agreed and quite hastily came up with the title, ‘How to tell if your healthcare professional is making it up as they go along’

Making it up

The link to the slides is here and the notes are below.

Art, Science or Practice?

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Science has made such enormous strides and contributed so much to modern medicine that it is tempting think that medicine needs to be more scientific. Indeed there is evidence that doctors cannot interpret even the most basic statistics that are used to present the findings of most medical research and the lack of statistical literacy has been described as a large-scale ethical problem. On the other hand, there are those who think that modern medicine lacks humanity and doctors need more training in the arts and humanities. Being embedded in one camp or the other, there are those who believe that a doctor who becomes more of one will become less of the other, and most people if forced to choose between competence and kindness will err towards cold-hearted technical skill rather than compassionate ineptitude.

But they are not mutually exclusive and medicine is neither art nor science, but a practice, in which clinical judgement is not only knowledge of what could be done, but wisdom to decide what should be done. This practical wisdom, or phronesis, the skill to combine expertise and value, science and subjectivity is what makes doctors practitioners, rather than scientists or artists.

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Brain surgeon, Henry Marsh’s extraordinary book sets the scene at the beginning of many of the chapters: in a darkened room his trainees are looking up at the projected brain-scans of patients admitted overnight who are being considered for surgery. Eager to impress, they are often quick and confident as they identify the anatomy and the diagnosis and possible surgical interventions. On the question of what ought to be done, whether the risks of surgery or the likely prognosis warrants intervention they are far more reticent. He notes, more than once that, ‘few people outside medicine realise that what tortures doctors most is uncertainty’ a point also made by US surgeon/writer Atul Gawande in his book about care at the end of life.

Evidence-Based-Medicine

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

EBM = clinical expertise + external evidence + patient values

Sackett was well aware of its limitations,

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

There may be more fundamental problems.

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

Clinical expertise = external evidence + patient values?

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

A better formulation might be,

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

Taking into account values and expertise is no easy task, and has been the subject of many of my blogs, but the science itself is too often of dubious quality and reliability and most associations tend to be overstated. Clinical judgment is inescapably uncertain.

Making sense of stats.

The misinterpretation of statistics by public figures is a common source of educational material. President Eisenhower’s astonishment and alarm at discovering that half of all Americans have below average intelligence being a well known example. New York Mayor, Rudi Giuliani’s relief at being diagnosed with prostate cancer in the US where survival is twice that in the UK is a good example of how screening can effect survival rates.

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It is easily assumed that the earlier something is diagnosed the better, but there are reasons to be cautious. For one, it may not be possible to do anything to prevent the progression of the condition, so an early diagnosis may just increase the number of years that you’ve got to worry about it. For another, the natural progression of many conditions can be variable and difficult to predict. In these cases, erring on one side of caution results in more investigations and treatment which can do more harm than good, as in the case of breast cancer. A recent review concluded that lives were not being saved by screening adults with no symptoms. Choosing Wisely is one of many movements dedicated to helping doctors and patients make sense of screening and other medical interventions.

Relative and Absolute risk reduction.

RRRARR

Statins, the drugs that reduce cholesterol levels are now the world’s most widely prescribed drugs, but most people taking them don’t know how much benefit they’re getting from them, or whether the benefits are likely to outweigh the risks. There are excellent online decision tools, here, here and here and many others. As statin can reduce your risk of heart attack or stroke by about 30%. This is the Relative Risk Reduction (RRR) and is the same for everybody. The Absolute Risk Reduction (ARR) depends on your personal risk of heart attack or stroke to begin with and so is specific to you. This is the one that matters. If you are at high risk, for example your parents had heart attacks, you have diabetes and high blood pressure, you’re overweight and smoke, then you’ll have a lot to gain – about a 30% ARR. But if you’re a fit 40 year old with none of those risk factors, you will have very little to gain, because your starting risk is so low, about 0.7%, and 30% of 0.7  is about a 0.2% ARR. In the slides I compare 50 year old smoker, Nigel Farage, with 43 year old, recently retired professional cyclist, Jens Voigt. The Numbers Needed to Treat (NNT) is a measure of how many people, like you (or Jens) will need treatment to prevent one heart attack or stroke. For Nigel it’s about 12 and for Jens it’s about 500. It’s worth considering that stopping smoking or eating nuts and olive oil every day would do Nigel more good than taking a statin and that either of them could have other risk or protective factors we don’t know about. Risk prediction is a very uncertain science.

Relative Risk Increase

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RIR

Newspapers, especially tabloids, make good use of relative-risk increase statistics, for example the Daily Mail: ‘3 rashers of bacon a day increases your risk of breast cancer by 20%’ headline. As with a risk reduction, a risk increase depends on what your risk of breast cancer is to begin with. Breast cancer is the most common cancer in the UK, affecting 1 in 8 (12.5%) of women. Fortunately almost 80% of women are still alive more than 10 years after diagnosis, but this doesn’t make it much less frightening. Assuming you are at average risk, a 20% increase on top of a 12.5% starting risk means an extra 2.5% risk, which equates to 2.5 cases of breast cancers over the lifetime of a hundred women who eat 3 slices of bacon every day for the rest of their lives. Professor of the public understanding of risk, David Spiegelhalter explains this in a video about bacon and bowel cancer.

What to ask your doctor and what to tell your doctor.

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One thing that would be good for patients to ask their doctor before taking a statin (or any medication designed to prevent some future illness) is, ‘What’s my risk to start with?’ It may not be possible to put a figure on it, but its definitely worth bearing in mind that the higher your starting risk, the more you’ll have to gain from taking the drug and vice versa. It might help to ask, ‘how many people like me would need to be treated for one to benefit?’ There is a great explanation of numbers needed to treat (NNT) here. I would also ask about what are the risks of side effects of the treatment and the numbers needed to harm (NNH).

Other things that are often overlooked are,

  • What do you know?
  • What is your interpretation?
  • What matters to you?
  • What are you afraid of?
  • What are you (not) willing to do?

These are questions that a good doctor should ask you, but often they won’t, perhaps because they weren’t trained that way. They’re taken from Atul Gawande’s book, Being Mortal. It took him almost 20 years to realise how important they are. They help you build a partnership with your doctor to answer the hardest clinical question of all, ‘what should we do?’

Be careful what you ask for

refscan

It may be tempting to skip the GP and go straight to a specialist, but the specialists’ diagnostic powers depend in part on the GP referring them only patients who have a significantly higher than average risk of disease. Brain surgeon Henry Marsh wrote that the experience he had gained by the end of his career made him much more cautious about who he operated on. Young specialists tend to be keen to intervene and tend to overestimate the value of their interventions. It’s tempting for patients and doctors, to skip this difficult, getting-to-know one-another phase and go straight for a scan or a referral, but without context and background information it can be extremely difficult to interpret results. For example, by the age of 50, 80% of people with no symptoms of back pain will have ‘disc-degeneration’ on an MRI scan.

Once you’ve told the GP about your problem and they’ve examined you, they will often wait and see. When Voltaire said that ‘the art of medicine consists of amusing the patient while nature cures the disease’ he was, for most conditions absolutely right. The most articulate of GPs, Iona Heath has described what we do as The Art of Doing Nothing. But doing nothing may require great strength to bear witness and support patients during terrible suffering, or very serious and careful listening. A good doctor will tell you how long your symptoms should last and make sure you’re seen again promptly if they don’t resolve in the expected time. By now the probability that you’re suffering from something more serious might have increased from 1 in a thousand to one in a hundred or even less. This excellent paper shows you how much time contributes to diagnostic accuracy in general practice and this online tool shows how changing the likelihood that a patient has a condition, radically improves the reliability of medical tests.

Good doctors make it up as they go along. 

Bayes

In the 18th century, Thomas Bayes developed a simple mathematical formula to show how adjusting prior probabilities affected future predictions. Doctors, who do this all the time, have been described as natural Bayesians. The history contributes up to 90% of a diagnosis and most of the remainder is contributed by physical examination and simple tests. Every question in a medical history and every sign in a physical examination changess the prior probability of a particular diagnosis.

Like the cyclists in the presentation, who have prepared as well as they possibly can, but need to be constantly vigilant of changes along the way, doctors are continually reappraising their patients, open to new information and changing circumstances. Good doctors are partners with their patients, sharing information in ways that they both understand, discussing values, risks and uncertainty and creating narratives that make sense to them both … making it up, as they go along.

Further reading:

The James Lind Library

Less is More Medicine

Going the distance

“I have to tell you, good medicine goes the distance with the living and the dead… The dead don’t care much but they do matter. And your presence with those people for whom they matter …  your showing up and pitching in and doing your part, is part of the very best medicine that you’ll ever do.”

Thomas Lynch, Undertaker-poet was speaking to an audience that included many medical professionals at the wonderfully eclectic Dotmed conference in Dublin. His work starts when ours finishes and as he gently reminded us a little overlap might do us all good. His words stuck with me, and were still very much in mind when I got news of John’s death.

At the age of only 29 he died in a motorbike accident just before Christmas. The first thing I did when I found out was to call his sister, Tessa. She was with her mum and they asked if they could come to the surgery, ‘Of course, come as soon as you can’

We met and shared our memories of John and they invited me to say a few words at his funeral. Here is what I said, with some added context and a couple of other memories I didn’t have time to include.

I was John’s GP for 11 years. I work in a practice that has a policy of every patient having their own doctor. Doctors and patients are possessive of, and loyal to each other. I got to know John as a result of asking him to come in for an hour at a time to help teach medical students about eczema. His was pretty severe. But what he taught us was that you can’t really get to know and understand what’s going on with someone’s skin, if you don’t make the effort to get to know and understand what’s going on inside their head. It’s a lesson every doctor with an interest in any organ needs to learn.

I remember the time he came in complaining that he felt ‘weak’. It’s probably the worst thing you can say to a GP because it’s the most common complaint and the least specific. It really isn’t helpful, diagnostically speaking. Inwardly, and sometimes outwardly too, we groan when patients complain of feeling weak. “It’s kind of interfering with my job”, John continued. He was a welder and I imagined him welding panels to the sides of ships. He was thin, but hard and wiry. “OK, OK, I said. Let’s examine you”. I gestured for him to stand up and we stood facing each other. “Now, lift your arms, like this,” I raised my arms out to the sides and above my head. John shrugged his shoulders and with all the strength he could muster, swung his hands up as far as his shoulders. They flopped back down again. ‘oh God,’ I thought, ‘this is terrible’, my fear and frustration came out when I pleaded with him, “Why the hell didn’t you come in sooner, I mean, in what way, exactly is could it possibly not be interfering with your work?!” His understatement had reached an unprecedented level. I called the National Hospital for Neurology there and then, and they said that they could see him in a couple of days. I told him to pack an overnight bag. They kept him in for 2 weeks of intensive investigations and after a couple of years back and forth to their outpatients, eventually he mostly recovered.

Not complaining was typical of John. If he was having a hard time, there was no point asking, ‘how are things?’ because he didn’t like to disappoint you or take up your time. After a while we found our ways of talking about ‘how things were’. Hard as my job is, I suspect it would be a lot harder if more of my patients told me how they were really feeling.

Another thing John taught me was that happiness, good health and self-confidence come from feeling you’re in control. One of the last times we met, he told me he’d been cooking. This was when we were watching Breaking Bad, and I felt a little nervous. I hear a lot of confessions in my line of work but I needn’t have worried, because John had been cooking eczema cream, out of beeswax, olive oil and brine. He had jars of it all over his flat. I tried to coax the recipe out of him, but what he’d really come in to tell me, was that it worked better than anything I’d ever prescribed. As if to prove it he didn’t pick up any of his monthly prescriptions for about six months after that.

What I’ve learned from John has relevance to almost all my teaching and my practice because it is about what it means to be a good doctor: the importance of listening, of not taking what patients say at face value and the importance of being able to manage without doctors.

What I’ve also learned is that the dead do matter and being John’s GP for just a little longer than I had expected was one of the most moving and rewarding things I have ever done.