Everyday ethics

schonIn the varied topography of professional practice, there is a high, hard ground overlooking a swamp. On the high ground, manageable problems lend themselves to solution through the application of research-based theory and technique. In the swampy lowland, messy confusing problems defy technical solution. The irony of this situation, is that the problems of the high ground tend to be relatively unimportant to individuals or society at large, however great their technical interest may be, while in the swamp lie the problems of greatest human concern. The practitioner must chose. Shall he remain on the high ground where he can solve relatively unimportant problems according to prevailing standards of rigor, or shall he descend to the swamp of important problems and non-rigorous inquiry? Donald Schon, 1987, p.3

Schon was referring to reflective practice, as very nicely described by Clare Morris on the Medical Education Matters blog. But he could just have easily have been talking about medical research or, the subject of this blog, medical ethics education.

A review of ethics curriculae in 2000 concluded that, there is a consensus that the ultimate goal of medical ethics, and indeed of medical education as a whole, is to create ‘good doctors’ (Goldie, 2000)

This surprised me and will probably surprise most medical students. Not only does medical ethics play a relatively small role compared to traditional subjects, but it is still possible in many medical schools to graduate without passing ethics assessments. Even when students do pass it’s relatively easy for a bright student to know what to say irrespective of whether or not they believe it, and even if they do believe it, the links between ethical thought and ethical action are tenuous.

What constitutes a ‘good doctor’ may at first to appear somewhat nebulous, but conceptions have been remarkably consistent. Whitehead studied discourses of the ‘good doctor’ over the last century and described them as a carousel, with different aspects rising and falling in prominence. To take one example, apparently contemporary concerns about the lack of humanity in care were also around in 1927 when Francis Peabody wrote in a keynote to Harvard Medical School,

“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 bluntly, they are too scientific and do not know how to take care of patients.” 

What is required to be a ‘good doctor’ is also context dependent, for example there will be times when technical competence takes precedence over sensitivity or quick decision-making takes precedence over patience.

The most interesting work about what it means to be a ‘good doctor’ is being carried out be Charlotte Rees and Louise Montroux who are studying medical students conceptions and experiences of professional behaviour. Unsurprisingly perhaps, students tend to think about professionalism in terms of individual character and action, rather than more general terms, such the GMC ‘Duties of a Doctor’ or the succinct 2005 Royal College of Physicians definition of professionalism,

A set of values, behaviours, and relationships that underpin the trust the public has in doctors.

The contrast between institutional definitions and medical student experiences of professionalism (and the ‘good doctor’) is perfectly described by Donald Schon’s quote above. An overemphasis on teaching principles has left medical students, professionals and patients sceptical about whether we are serious about helping students and doctors to ‘be good’.

A brief history.

For the first half of the twentieth century there was little or no concern with educating for professionalism- a medical ethics reliant on etiquette and paternalism was assumed because a doctor was ethical by virtue of the being the kind of ‘gentlemen’ that doctors were, and medical ethics was not a subject that could be studied as, “One acquired it in the course of learning to become a good doctor,”

Doctors were assumed to be ‘good eggs’ and that was reason enough to dismiss attempts to introduce anything resembling professionalism/ ethics or communication skills training. The problem with this approach was the rather obvious fact that there had always been ‘bad eggs’. Medical ethics education was slowly introduced in the 80s and 90s, but it’s still possible to graduate at the end of medical school without passing exams in medical ethics. Even if a student passed exams in medical ethics it was highly doubtful that knowledge of ethics translated into ethical action anyway. Among the profession, the problem of scandals involving ‘bad eggs’ in recent years caused such a stink that the laissez-faire approach to professional self-regulation could no longer be tolerated. And so the state took stepped in and now we have inspections and regulations, appraisals and revalidation which have demoralised professionals with administrative burdens while doing nothing to improve professionalism or restore public trust.

It has become increasingly obvious that neither medical ethics education, nor professional laissez-faire self-regulation, and certainly not state bureaucratic inspection and regulation are contributing to professional, ‘good’ doctors.

How to become and stay, a professional, good doctor.

The 2010 Royal College of Physicians, Future Physician report said,

We call on all doctors to recognise that medical professionalism in a changing world looks beyond the boundries of medicine. (RCP, 2010)

The first, and most important thing to do is realise that being a professional good doctor more than anything else, is in order to benefit patients and society. According to George Bernard Shaw, ‘all professions are a conspiracy against the laity’, and the medical profession is singled out as ‘a conspiracy to hide its own shortcomings’. This is still a popular belief and can only be addressed if professionalism is conceived, taught and practiced in partnership with patients and the public.

The most important part of partnership is humility. The definition of evidence-based medicine as the integration of scientific evidence with professional expertise and patient values, demonstrates the paternalism that still dominates medical thinking. Missing from this conception are the professional’s own values, the patient’s expertise and the expertise and values of other important stakeholders such as family and carers. Putting our own values into perspective can be achieved by values Based Practice. Narrative medicine teaches us narrative humility, the awareness that patients have not only medical, but also personal histories and the awareness that illnesses fit into the context of real lives.  Teaching about epistemic justice reveals that patients have ways of interpreting illness, suffering and medical interventions that are of profound importance.

Awareness that  our own, medical perspective is only one of many requires us to engage with voices and opinions we might not come across in our usual practice. Social media offers huge potential because it is here that people using blogs, Facebook, Twitter and so on are writing their own stories about their experience of illness, suffering and overcoming and about healthcare and professional behaviour. Conversations between patients and professionals are challenging and reinforcing conceptions of professionalism, the good doctor and the good medical profession.

Remaining professional and being good in the ‘swampy lowlands’ of clinical practice requires career-long sustenance. Narrative-based supervision combines aspects of narrative medicine and clinical supervision in a form that students and professionals can use to support each-other with the ethical problems they face every day. This gives greater emphasis to the importance of teamwork, shared responsibility and learning, and mutual support that makes participants active in their own professional identity formation. A model of group support that enables staff of all backgrounds and levels to come together and talk about how they are affected by caring for patients, called Schwartz rounds, is already taking place at over 300 English NHS institutions. Both narrative-based supervision and Schwartz rounds allow more senior professionals to take on the role of supervisee, so that in so doing they role-model clinical uncertainty, ethical difficulty and professional vulnerability, in short – humility.

Traditional ethics, based on principles and case-based discussions should not be abandoned. It comprises part of the instructional scaffolding  necessary for deeper learning and ethically informed practice. Combining technical expertise with moral sensitivity is the art of medicine known as practical wisdom or phronesis.

Combining medical ethics with practical humility would be a sound basis for training, nurturing and sustaining professional, good doctors now and in the future.

What is healthcare for?

Review of Humanising Healthcare by Margaret Hannah

“Who and what is the healthcare for?” is a deceptively simple question, and it’s one which Margaret Hannah has tackled with courage and compassion. At its heart is a conception of health that is based on positive relationships, itself a radical conception in the face of a post-war consensus of individual rights and individual autonomy. She describes the origins of the Pioneer Health Centre in Peckham,

Back in the 1920s a pair of doctors in South London broke ranks with their peers in deciding to discover the enabling conditions that might lead to health rather than the patterns of disease. They found that the key to good health was family and friendship: it was impossible to be healthy alone.

The importance of relationships runs like a golden thread through this book, and with the challenge of an ageing population who fear becoming lonely and a burden more than death itself, this is a message that will resonate strongly.

In his third, and strongest Reith lecture, US surgeon/ writer Atul Gawande turned to the theme of his latest book, Being Mortal. He interviewed over 200 people and families for whom the end of life seemed pressing as well as people specialising in end-of-life care and distilled their wisdom down to two important themes. The first was that we need something outside of ourselves to live for. He gave examples of nursing/ residential homes that introduced pets and plants for the residents to take care of. Being the carer – and not just the cared-for gave them a new lease of life. As Hannah puts it,

We all need something to get out of bed for in the morning. In a metaphorical sense, meaning and purpose are like vitamins and their lack curtails life and flourishing. Meaning and purpose cannot be achieved alone but are built with the hope and belief of others.

Gawande’s second insight was that healthcare professionals need to ask patients about their goals and what really matters to them, and then tailor our medicine to help them achieve that.  This is an aspect of what Professor of General Practice Ed Piele calls Values Based Practice. A serious clinical consultation isn’t just an exchange of facts, but a mutual exploration of values which are frequently messy and contradictory – a world away from clear-cut, simplistic clinical guidelines. Psychiatrist and ethnographer, Arthur Kleinmann highlights the problem,

As patient and primary caregiver for a wife who is in the terrible terminality of Alzheimer’s disease, practitioners and even family members are better prepared by our culture and our health-care systems to express and respond to lists of stereotypes and clear-cut rules than they are ready to deal with divided emotions and hidden values.

Kleinmann argues that we need to teach healthcare professionals skills at critical self-reflection on the complexity and irony of what really matters. Gawande says that we need to ask patients what they understand, what matters and what sacrifices they are, or are not willing to make. This isn’t as easy as it sounds. In one study Gawande quotes, less than 30% of patients and families expected to die within four months had these conversations about what matters with their medical teams. Patients and physicians will recognise that awkward moment in a consultation, when it’s clear the treatment isn’t going well and values are hanging in the air, aching to be pulled down and spread out, but instead of dealing with them, the doctor turns to the computer and says, “I’ll just check the guideline…” Hannah gives an example of a doctor who has changed his practice to put values at the centre of care, describing the tendency to revert to his old disease-centred ways, he confesses, “I am a recovering physician” 

In Humanising Healthcare, Hannah says that we urgently need to ask what we understand, what matters and what we’re willing to do, not just with our patients but with our healthcare system. We need, as the other authors also argue, to get our values on the table. There will be consensus and dissensus, it won’t be easy, but we cannot go on as we are. It’s not just that we’re unlikely ever to be governed by politicians who will raise taxes to spend ever more on healthcare, but there are more fundamental problems with a healthcare system designed around diseases rather than people.

Prof. Trish Greenhalgh reckons that multi-morbidy will be Evidence Based Medicine’s nemesis, like weather forecasting, every new diagnosis and changing social context is a complexity multiplier. Now we live for years with heart, brain, lung, neurological etc. diseases that once would have killed us. Evidence based on single diseases becomes ever-less certain in the face of multi-morbidity. Multiple specialists, clinics and medications add up to an intolerable burden of care. We need specialists in people and relationship-based care, now more than ever.

Hannah explains how a system of healthcare based on shared values and meaningful relationships can be created by describing the development of the South Central Foundation (SCF) healthcare system in Alaska,

Realising that nothing short of a radical reform would both improve services and control costs, SCF … undertook a two-year community listening process to find out what the people really wanted from their health service and how they wanted to be treated. Then they delivered it.  

Few places in the world have the opportunity to start afresh, but evolving ourselves out of the mess we’re in is likely to result in more fire-fighting just to survive until the next financial year. Hannah describes a three horizons model of change. The first horizon is where we are at present and the third is where we would like to be. The second horizon is where these competing visions collide, a zone of numerous initiatives and innovations. Like conversations about values with patients, these collisions will be difficult, but we have to get our values on the table in order to have a vision about what kind of healthcare we want. And if it is healthy relationships and compassionate care that we want, then continuity of care, minimally disruptive medicine, values based practiceresisted medicalisation and patient involvement are a few of the things happening right now that we can carry forward.

Humanising Healthcare is a book that makes us think, ‘what does it mean to be healthy and what do we want from healthcare?’ It reminds us that medicine is only one of the ways to good health. What she thinks, and I agree, is that we need a healthcare system that supports healthy living and healthy relationships, one that calls on medicine only when it’s needed.

 

 

What are we afraid of?

Review of

Atul Gawande: Being Mortal: Medicine and What Matters in the End. Profile Books

Margaret McCartney: Living with Dying. Pinter and Martin

First published on BMJ Blogs

Surgeon, professor, and best-selling writer Atul Gawande confesses, half way through his new book, Being Mortal, ‘I felt foolish to still be learning how to talk to people at this stage in my career’. Like every conscientious, solution-focused surgeon he has found an answer by way of a simple, honest phrase to share with his patients, ‘“I’m worried.” ‘They were such simple words’ he says, ‘but it wasn’t hard to see how much they communicated.’

The patient might very well respond, ‘But I’m the sick one, what the hell are you worried about?’ This is an excellent question. Among the things doctors worry about is their own mortality and their inability to cope when they cannot cure. In 2012, Professor of General Practice, Keiran Sweeney found out he had incurable lung-cancer by reading his hospital discharge summary at home. He believed that the other doctors hadn’t told him because, ‘they were afraid to confront the metaphysics of my predicament, I am a man without hope.’ Many doctors are afraid to confront death, and others cannot bear to bear witness to suffering they cannot relieve.

One of the other things doctors worry about most is uncertainty, and as Iona Heath has recently argued, failure to manage uncertainty is an important cause of over-treatment, at the end of life especially. Faced with the question, ‘How long have I got, doc?’ doctors are particularly unsettled. Not wanting to disappoint their patients, or perhaps suffering over-inflated opinions about their treatments, many cancer-specialists tend to over-estimate life expectancy. But the disease of the modern age isn’t just cancer, where life expectancy is hard enough to predict, so much as multi-morbidity, the accumulation of several long-term conditions of which cancer may be one. Any single morbidity can deteriorate at any time, causing the others to buckle under the strain, but with intensive medical intervention you may be brought back to life; or not. You might survive for days or years. The awful truth is that we cannot tell how long you’ve got, and as Margaret McCartney explains at the beginning of her book, Living with Dying, life expectancy isn’t a problem that science looks likely to solve for the foreseeable future. Her previous book, The Patient Paradox was, among other things, a warning against the false predictive certainty of screening, and in Living with Dying she urges continued caution at the end of life. McCartney is a GP who works at the interface between suffering and disease where symptoms frequently defy explanation and the course of action is negotiated in the consultation between doctor and patient. For a conscientious GP, a consultation is as much of a skill and a matter of pride as an operation is for a surgeon. This is why GPs devote a considerable part of their training to consultation skills while surgeons are practicing their technical skills.

Remembering his communication skills training from medical school, Gawande notes that we have moved from Dr Knows-Best to Dr Informative, from paternalism to consumerism. But patients are neither children nor customers, despite the insistence of old surgeons and young policy makers. They are, unless they choose otherwise, our partners in care. Making the shift from Dr Informative to Dr Interpretive (I prefer ‘interested’), Gawande noticed that he was doing a lot less talking and a lot more listening in his consultations. Carefully eliciting our patients’ understanding of their condition, what matters to them, their goals, and how far they are willing to go down a medical route to achieving those goals is, or ought to be the aim of any consultation, not just those pertaining to the end of life. We wouldn’t expect a surgeon to be as skilled in the art of consulting as a GP, any more than a GP would be able to perform surgery, but a decision to operate, without exploring a patient’s values may be the wrong decision.

Much has been made of a tendency to medicalise the end of life, but both authors are clear that medicine still has a lot to offer. Many diseases can cause frightening and agonising deaths and good medical care, especially palliative care has a lot to offer. The last chapter in Gawande’s book, about his father’s death from spinal cancer is particularly harrowing, especially because his pain appeared to be so poorly controlled. I couldn’t help wishing he’d had better palliative care and a subcutaneous morphine pump. Symptom control can be very difficult and I think McCartney is right to be sceptical about the emphasis on helping people die at home. Some of us will require more help than others, and she is right to say, ‘how we die may be more important than where we die.’

Another consequence of medicalisation is to treat death as an illness. Because illness is embodied, a war on cancer or against death becomes a war on people with cancer or a war on the dying. It is an objectionable metaphor, but disturbingly apposite, and both Gawande and McCartney describe patients who suffer the full, brutal, futile force of fourth-line chemotherapy and cardiopulmonary resuscitation attempts. Freud balked at the ideas of doctors practicing psychoanalysis, as they would attempt to cure, rather than illuminate psychic suffering. Around the same time, in 1927, Francis Peabody wrote, ‘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 bluntly, they are too scientific and do not know how to take care of patients.’ In Being Mortal, Gawande writes, ‘We’ve put ourselves in the hands of the medical profession, valued more for their technical prowess than their understanding of human needs.’ We are still not very good at shifting our efforts from curing to caring or even providing both together.

Both books are, in fact, less about how we manage death, than how we care for the frail elderly, who with their multi-morbidities, may have years yet to live. As McCartney explains, frailty is a more reliable prognostic indicator than any medical diagnosis, but there is no drug or technical solution for frailty. My father saw both of his parents and his younger brother, suffer terrible psychotic, personality destroying dementia. Like many elderly people he fears losing his dignity, and his personality, being in pain or being a burden on his family more than death. And yet, as arthritis, heart and stroke-disease, diabetes and dementia take their toll, his greatest fears are unavoidable. And it is on my mother, above all, that the burden of care has fallen. At least he has his family and mostly, though his hearing is poor, his senses. Many elderly people are very lonely, without friends or family, or shut off from the world by the loss of their senses. As the proportion of elderly people rises and families become more fragmented, inter-generational age-gaps widen and austerity bites, the burden on care-givers will inevitably increase. Our inability as a society to provide sufficient resources for this is reason enough to fear aging more than death. The inspirational care-home menageries and independent living schemes Gawande describes are not the places most of us will spend the end of our lives. Carers are poorly paid (if at all), poorly trained (if at all) and for the most part under-supported, but no political party is willing to increase taxation to pay for better care.

With this grim thought in mind, we cannot avoid thinking about assisted dying (AD), though as McCartney, the more political writer says, ‘if we are fearing our death, let us at least not fear the things society can and should provide’. In my view, excellent personal and palliative care at the end of life will minimise, but not entirely eliminate requests for AD, but the spectre of inadequately funded care makes me worry that people will chose AD to avoid being a burden.

There are reasons to be hopeful. Gawande will be giving this year’s Reith Lectures and these issues will be given the high profile and public debates that they fully deserve. The Royal College of Physicians Future Hospital Commission has called for more expert generalists and geriatricians who specialise in managing multi-morbidity and care of the frail elderly. Palliative care, where it can be accessed is usually excellent. Many GPs are prioritising continuity of care, in our own practice, the percentage of appointments where a patient sees their own GP has risen from 50% to 80% in 2 years. Websites like Dying Matters and Death Café are facilitating conversations about death and My Ageing Parent is full of useful advice and support.

It is great that these two doctors have bought these issues to our attention. Gawande’s book is an easier read, in part because he is a brilliant writer, but also because he tells us what we want to hear, but it is Margaret McCartney who has long-known what Gawande has only just discovered, who is telling us what we need to hear. It is up to society and politicians to decide if we are prepared to provide the support so desperately needed for our ageing population.

How’s my consulting?

A couple of weeks ago I invited Sarah, another GP in our practice to observe one of my surgeries. All the patients were warned before-hand that another doctor would be there. She watched and listened intensely and took notes as I consulted. Before calling in some of my patients, I explained about their background:

I’ve known Brian for about 7 years, he was diagnosed with Parkinson’s disease when he was just 45, and has had several falls, fracturing his hip and shoulder in the last couple of years. He had to take early retirement and sell his building firm and has been severely depressed. His wife does everything she can to look after him, but she’s at a loss, and to be honest so am I. He’s lost a lot of weight because he stopped eating. I asked the psychiatrists to see him but he hasn’t had an appointment yet. I’ve really been worrying about him.

Being able to describe to another clinician, an experienced, trusted peer, how much I knew about my patients along with my concerns and fears, was really powerful. Like every doctor who values continuity of care I know the majority of my patients, but being given the opportunity to describe them to Sarah, really made me think about how important this is.

So much of what we do in clinical practice is done in silence. While I listened calmly and intently to Mehmet my mind was silently whirling, trying to identify clues that might help me make sense of his constellation of symptoms and the investigations he’d been through and medications he had tried. So much of general practice is spent in the ‘swampy lowlands’ between suffering and disease, where symptoms are far easier to describe than to explain. The tools of our trade: protocols, pathways, guidelines and diagnostic categories can be applied to a minority of the problems our patients present with. Multimorbidity is the price we’re paying for longevity, so we can now survive with an array of diseased organs, but they’re intricately connected; a drug for one is poison for another, and if one fails the others struggle to take the strain, in often unpredictable ways.

But working in isolation, we rarely articulate the uncertainty that characterises so much of our work. The limits to how much we can tolerate move in and out with the tide of our resilience. Confidence and strength, far from being sure of the answer, is being able to live with the anxiety of not yet, or perhaps never knowing. My friends and colleagues are more stressed than ever before, and an inevitable consequence appears to be more referrals to hospital where the burden of uncertainty can be shared, a phenomenon already understood. Sarah and I shared the uncertainty, and discussed how to help Mehmet.

I had watched Sarah in a surgery the week before. One of the things she asked me to look for was the way she concluded consultations, she wanted to know how to conclude a difficult discussion with one patient and not keep the others waiting – we have only 12 minutes for each appointment. I had written recently about how we give reassurance, whether we do so for our benefit or our patients, and how giving confidence might differ. I took notes and we discussed how she worked, how patients responded, where she thought it went well, and how it might go better.

Opening your practice up to close scrutiny and learning from the experience, means being able to say, ‘I’m struggling with this’, it’s not about showing off, so much as exposing yourself. The majority of doctors never do this. To do this requires trust; that the person you’ve invited in, understands what you’re trying to do and that they are there to help. John Launer’s wonderful work on clinical supervision, teaches us that a very powerful way to help one-another learn is by curious questioning – helping the person you’re supervising to think deeply about the way they’re consulting. He concludes,

Collectively, good conversations can be transform a working culture from one that is technocratic, impersonal and potentially dangerous, to one that is both kinder and safer.

The Berwick and Francis reports into poor patient care at Mid Staffordshire hospital recommended above all, that patient safety depends on lifelong learning, aware perhaps, that the features that unite under-performing doctors are isolation and lack of insight. Sadly all of the emphasis has been on more regulation and inspection and the experience of many clinicians is that they have less time for education and are less supported than ever before.

US surgeon and writer, Atul Gawande argues convincingly that the most experienced doctors can benefit from coaching in the same way as professional sportsmen and women do. Gawande, an experienced surgeon, was used to operating independently, without supervision, but invited a respected colleague to watch him perform a routine operation. His colleague made several critical observations that made Gawande realise that unless supervision is required or actively solicited, opportunities to improve the quality and safety of patient care will be missed.

We owe it to our patients and each other to open ourselves and our practice up to our peers who can provide education and support in equal measure. Clinical supervision should be for life, we cannot afford not to make time for this.

Postscript.

Several people have asked how we found time.

We both came in on our half-day to observe, in our free time. This isn’t sustainable, but it was far more valuable than many (most) conferences or ‘educational’ meetings I have been to, and I would happily use some of my study leave to do this in future.

How much do you cost the NHS?

First published on Open Democracy

Tory MP Jesse Norman has come up with an idea to send everyone who uses the NHS an Annual Healthcare Statement. It is designed to dissuade people from presenting to hospital or GP surgeries unnecessarily by showing them how much they have cost the NHS and ‘by implication the value of NHS services’. The report goes further to suggest that ‘more incentives’ could be added in the future.

Fear that a free NHS would result in overwhelming demand has been around since the very idea of an NHS and has been superbly deconstructed by Julian Tudor Hart. Politicians and economists couldn’t believe that free healthcare wouldn’t result in unsustainable demand and in a panic, introduced prescription charges which led to Nye Bevan’s resignation.

In 1951 the first postwar Conservative government set up a Royal Commission to measure abuse and extravagance. After painstaking studies the Guillebaud Commission found no evidence of either, only hard-working staff and stoical patients, underfunded and lacking investment.

Study of a poor inner city area in the early 1970s showed that for each person who consulted with a minor problem, more than two others failed to consult at all, despite recent severe or worrying symptoms. Contrary to subjective impressions of overworked doctors, fear and denial of illness were more powerful than avidity for free consultations. Despite free universal access to the NHS, for most important chronic conditions less than half are medically recognised, of which roughly half are treated, and roughly half of these are controlled. Far from expecting infinitely, NHS patients expect too little.

The most vulnerable patients already fear that they are a burden on the NHS and consequently attend too little, or fail to attend because they are feeling ashamed, or even because they are feeling too unwell. Parents of young children feel strongly influenced by a sense of responsibility to act as competent parents and the fear of overwhelming guilt should they fail to do so. And consequently feel ashamed and stigmatised if they are made to feel they are wasting professionals’ time. I have had a patient present with a breast cancer that had almost completely destroyed one breast, another that had a stroke but waited 3 days until they could see me instead of going to A&E, and another who ended up on a ventilator because she thought she was wasting NHS resources because her asthma is so difficult to control.

For the last two years GPs have been required to review their patients who attend out of hours, A&E and the GP surgery most frequently in order to try to identify whether they can be better cared for. The majority are very sick with severe heart, lung or neurological diseases, often requiring intensive treatment. I can think of one patient who spent 6 months in hospital with recurrent perforations of his intestine due to his Crohn’s disease.Under Jesse Norman’s proposal patients like him would be presented with the highest bills. Others have serious mental illnesses, sometimes compounded by illicit drug or alcohol use.  There are certain groups of patients who attend frequently, who on superficial analysis might be assumed to be attending inappropriately. Some of them are suffering from ‘medically unexplained symptoms’. These are physical symptoms like chest and abdominal pain, headaches, blurred vision, numbness and tingling, weakness and so on. In some cases they represent serious, difficult to diagnose disease, and in other cases the symptoms are a manifestation of unresolved, and often unresolvable psychological pain.

Other groups that frequently attend are patients who are extremely anxious, those that are suffering domestic violence, those that have been abused and the the very lonely. Experienced GP John Launer has asked, ‘What is an emergency?‘ He recalls diagnosing a child with meningitis who appeared, at the time they came into his surgery, entirely well. He continues,

I will happily accept having seen tens of thousands of mildly snotty toddlers over the years, giving their anxious parents a bit of friendly advice and education, and seeing them on their way in less than 5 min. We cannot, in other words, preach the importance of our own expertise and at the same time berate people for making use of it.

Jesse Norman said to me this morning, that it would be very easy to see a GP reviewing an annual account with a very vulnerable patient and encouraging better use of services with better outcomes. He said that it would be ‘especially valuable to the most vulnerable patients’.

When we meet with our most vulnerable patients, we spend the time trying to work out how best to help them. Usually we know them very well, because they come to their GP a lot as well. I have a pretty good idea about the impact of an Annual Statement. It will almost certainly add to their sense of being a burden on society and the NHS, something that they already feel. It will add to the anxiety parents of young children feel when they try to identify the goldilocks zone where their child is sick enough to warrant medical advice, but not so sick that they’ve left it too late. It will encourage a superficial view of healthcare as a commodity, rather than care as something complex that happens between people. Something recorded as a minor illness on a hospital letter happens to someone with a history and a home-life, hopes and fears. Once you start to understand these, you might come to the conclusion that there’s no such thing as a trivial consultation.

Which coincidentally was the first blog I ever wrote.

How to handle shame

“I feel so ashamed”

Vivienne had just been told by Hannah, the young gynaecologist that she had pelvic inflammatory disease (PID), an inflammatory condition caused by sexually transmitted infections.

“I didn’t know how to respond” Hannah later confessed. “I wanted to tell her that it was nothing to be ashamed about, but that seemed so insensitive, because she she really did feel ashamed. But also I didn’t want to say, “it’s OK to feel ashamed”, because then she might think that I was saying, “yes, you ought to feel ashamed”.”

We had been discussing an essay I had written about how shame presents in clinical encounters.

The bottom line is that shame is never a good thing. Which is not to say that shame never leads to a positive personal transformation, because there are plenty of testimonies to show that it sometimes does, but rather that the negative consequences of self-harm and self-loathing, isolation and the rebound effects – doing more of the things one has been shamed about – considerably outweigh the positives.

Shame often leads to unbearable loneliness so one of the best things we can do for people who are feeling ashamed is simply to stick with them and see them through it.

Brene Brown uses the example of someone who is feeling ashamed sitting at the bottom of a pit to show how we can helpfully respond.

Vivienne is sitting at the bottom of a deep, dark pit.

Hannah is walking past with another doctor. Her colleague peers in.

“Oh dear” her colleagues says, “Sorry to see you there, it looks pretty bad. I hope you can get out soon.”

She walks off.

Hannah looks down.

“Hi, I’m sorry you’re stuck in the pit”

silence

“I’d like to come down and see what it’s like, but it’s too far”

silence

“Is it as cold and dark as it looks down there?”

“It is. It’s really dark. And cold and damp too”

“oh, that sounds awful”

“it’s the cold I hate the most”

“Would you like a blanket?”

“Yes please”

“I’ll get one for you”

“Thanks”

“Are you on your own? Is there anything else down there?”

“I prefer not to see anyone. Sometimes my sister comes down, but not much. I think it’s too dark and damp for her”

“I’m sorry to hear that, do you get lonely?”

“I do, but I can’t really handle other people, and I don’t think they can really handle me either”

… continues …

When Brown describes empathy she describes someone climbing down into the pit to sit with the person. She proposes that what people need when they are feeling ashamed is empathy, someone willing to let them know that they too also feel ashamed and vulnerable at times. I think that this is too much to ask of young doctors who have probably never experienced anything like what their patients are going through. It’s made even harder by differences in age, class, culture, power and so on.

What I think matters, in these professional interactions, is showing an interest, a gentle curiosity, a sincere desire to know what it’s like to be at the bottom of a deep pit, – that is, what is like to live with a chronic illness, or be faced with an serious or incurable disease, or to feel ashamed. We need to let our patients tell their stories.

Philosopher Havi Carel is very helpful here.

Living with a serious illness herself she reminds us,

  • Describing to others what it is like to live with and experience a serious illness can be really difficult (even for a philosopher). Patients might need our help to do this
  • Doctors and healthcare professionals are interested in symptoms, but rarely ask patients what it is like to actually live with and experience illness
  • Patients’ interpretations are often uninvited, unrecognised or ignored because of lack of time, or a perception that they are unimportant
  • Patients are afraid to offer descriptions of their lived experience – what Carel also calls the phenomenology or embodied experience of illness because professionals are in a position of power over patients and only allow patients to tell the medical narratives they want to hear
  • I would go further and say that at a policy level there is no accounting for the time and continuity of relationships necessary to have these conversations

In Illness as Narrative, Ann Jurecic explains,

“if one of the consequences of modernity is that we no longer depend on traditional explanations for suffering, loss and morality, and if doctors’ offices and hospitals cannot function as spaces where personal meaning can be developed, then the existential questions about human fragility and significance have to be asked and answered elsewhere” (Jurecic 2012)

Patients may feel very exposed when they tell these stories, especially if they include shame or fear of death, disability or loss of independence. They need to be invited, not forced to share them with us. Doctors may be afraid of inviting patients to tell these stories because we share the same fears ourselves. The lessons of doctors who have been patients is that when we do this both doctors and patients benefit.

As medicine continues its transformation from being curative to supportive because more patients are living longer with more serious conditions it will become increasingly important for us to understand their experiences. The sacking of NHS managers, impossible to achieve savings, and an obsession with regulation and targets is forcing doctors and nurses to spend ever-more time staring at computers and sitting in meetings, leaving little time to listen to patients.

Closer attention to our patients’ narratives can make our work more humane and effective. We must demand more time with our patients and better continuity of care, so that we can do this.

Further reading:

Listening and measuring. Abetternhs blog.

Patient reassured. How to give patients confidence. Abetternhs blog.

Patient voices. Illness and epistemic injustice. Havi Carel

Epistemic injustice in healthcare: a philosophical analysis: Havi Carel

Seen but not heard. Children and epistemic injustice: Havi Carel

Patient stories, narratives of resistance and the ethics of humane care: a la recherche du temps perdu Mishler 2005

Perceived weight discrimination and changes in weight, waist circumference, and weight status. 2014

‘Care left undone’ during nursing shifts: associations with workload and perceived quality of care. BMJ Quality Safety 2014

Computer templates in chronic disease management. Swinglhurst 2012

Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice. 2001

“Patient reassured”

“Patient reassured”

GPs write this so often in patients’ records that by the time we’ve written Pat… the software has completed the phrase. It’s almost certainly the commonest concluding remark of a consultation, especially one involving a parent of a sick child or someone worried about a symptom that they had associated with something serious like cancer. We spend a lot of time learning about communication in medical school and afterwards in our GP training (believe it or not), and I am still learning.

Maisy’s ears look fine, her throat is a little pink, her glands are a little enlarged, her chest is clear and her tummy feels fine, and her temperature is just a little bit up at 37.8 It looks like she’s got a viral infection and I expect she will be like this for another two or three days before she gets better

I watched Keris, the trainee GP describe her examination findings to three-year-old Maisy’s mum. Keris looked kind, friendly and concerned as she faced Maisy’s mum, consciously ignoring the computer screen next to her. Maisy looked tired and pale and sat on her mother’s lap with her head leaning against her chest. Her mum looked tired and worried. Keris noticed this,

“Was there anything else you were worried about?”

“No not really, thank you. I suppose, well you’ve checked her and you’ve said she’s going to be OK”

“If she gets any worse, or you’re worried, you can always call us again and we can see her if necessary”

“Thanks, and thanks for seeing us so quickly” Maisy and her mum left and Keris turned to finish typing up her consultation. She began to type, “Pat …”

We looked at each other, was Maisy’s mum really reassured? Was reassurance what she wanted or needed?

A series of studies looking at parents of sick children suggested that what parents want is not only reassurance – that there are no signs of serious illness and their children will be OK, but reassurance that they have done the right thing at the right time, by asking for medical advice. Beyond reassurance, the articles suggest that what parents want and need is confidence in the doctor and confidence in their own abilities.

In one study, parents

felt excluded from the apparent mystique of the professional’s assessment. The commonest example was seeking advice about a chld’s cough when they feared infection “on the chest” because the child’s chest sounded, and even felt, “rattly”. However the doctor would pronounce the lungs “clear” on examination despite apparent evidence to the contrary. Parents would then find it difficult to question the doctor’s authority and were left feeling silly for worrying or still perplexed by the problem.

The significance of this is highlighted by another study about parents experience of criticism when presenting with sick children,

Parents reported being made to feel stupid or silly in these negative encounters with health care professionals, usually doctors. They felt that they had been criticised, even when no directly critical comments were made the criticism was communicated through the attitude or manner of the doctor concerned.

Being made to feel stupid or silly makes parents feel of guilty or ashamed, for example that they’ve wasted health-professionals’ time or that they are bad parents. The consequence of this felt or enacted criticism was that parents tended to feel more anxious about their abilities to recognise and manage their childrens’ illnesses. Thinking back on my own experience as an inexperienced A&E doctor and an exhausted GP, particularly before I had children of my own, I have no doubts that I left parents feeling bad about wasting my time. My intention, in a rather careless, ignorant or callous way, was to try to make sure they didn’t come back with a similar problem in future. My role was conflicted between my duty to my patients and my duty to stem the tide of demand. These pressures are even higher now as a result of cuts to NHS funding at the same time as rising demand and increasing emphasis on individual responsibility. Parents feel in a double bind, expected to find the ‘Goldilocks zone’ where their child is sick enough to warrant medical advice, but not so sick that they’ve left it too late, whatever the illness. Signs on buses and A&E (Emergency) departments warning parents and patients not to waste healthcare professionals’ time highlight the ignorance of government advisers, suggesting, “You won’t get any sympathy here if you’re child isn’t seriously ill”. GP and educator, John Launer has asked, rhetorically, “What is an emergency [anyway]?

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Doctors who make parents feel bad about bringing in sick children may believe they are avoiding patient dependency especially when the parents don’t come back. But,

Parents leave such encounters without the capacity to manage the situation, still anxious about their child’s illness and therefore may need to seek advice again.

And so, still anxious, they present elsewhere where they are less likely to see the same health professional again or where they think they are less likely to be criticised. It has been suggested that because of their position of authority, doctors are more likely to be perceived as critical than nurses. I’ve met gentle doctors and fierce nurses, but in general this rings true.

What should we do?

We should start by acknowledging, explicitly if possible, that parents are,

strongly influenced by a sense of responsibilty to act as competent parents and the fear of overwhelming guilt should they fail to do so. (Kai)

So we should reassure them, not only that their child is OK, but that they are not wasting our time and we understand their concerns. GPs are taught to explore parents ideas, concerns and expectations, but while these shouldn’t be pre-empted, it helps to know that in one study, parents of children coughing worried that their children might die, by choking to death or that they might develop long-term damage like asthma. Almost all parents have experienced a child who has been listless, feverish, coughing and miserable all night only to perk-up as soon as they get to the GP or hospital and wonder how or why they did that.

Secondly, the experiences of parents of sick children reveals that we need to go beyond learning about ideas, concerns and expectations to understand informal social rules, our  role as moral agents, how actual or perceived criticism can lead to guilt or shame, and how to use our own power to empower parents (and other patients).

Thirdly, we need to give explanations that make sense to parents. In the first study, If the doctor told them that,

their child had ‘a virus’ or ‘a bug’ it was confusing, provoking anxiety rather than reassurance, and sometimes anger. Some parents believed that a viral explanation was offered when the doctor was unsure about the diagnosis.

Finally, we need to go beyond reassurance, to give parents and patients confidence in themselves and their ability to cope. One of the reason this is difficult, especially for inexperienced doctors is that first they have to reassure themselves that the child is OK, and have confidence in their own abilities. Sometimes when we think we’re reassuring patients, we’re really just trying to reassure ourselves, like Keris above. My own experience and that of other older doctors is that trainees these days have more anxiety-provoking assessments, but less confidence-building experience than they used to. We also need to think critically about patient choice and information – the twin obsessions of policy makers, because they are only means to the ends of patient reassurance and confidence. Used carelessly, too much choice and information and can worsen parents’ anxiety and undermine confidence.

One of the most effective ways I learn is by watching my colleagues and trainees work and by inviting them to watch me. When experienced surgeon Atul Gawande noted that even the most experienced sports-stars benefit from a coach he invited a colleague to watch him at work and was amazed by how much he could learn. I’m in a fortunate position of teaching trainees when I work, but I’m now making time for my experienced colleagues to watch one another.

Even though I’ve been a GP for 14 years, I still find this useful. Just as parents share stories, which often take the form of moral tales, about their experiences with sick children and medical professionals, by sharing stores about how we struggle to be better doctors, we realise we’re struggling with the same issues. To be a good GP – or indeed any healthcare professional, is difficult because it’s bound up with sensitive relationships. We need to articulate this to policy makers who think our work can be automated or industrialised and we need to support one another and know that we can help each other change.

Further reading: 

Why do mother’s consult when their children cough? http://www.ncbi.nlm.nih.gov/pubmed/8359610 1983

What worries parents when their preschool children are acutely ill, and why: a qualitative study http://www.ncbi.nlm.nih.gov/pubmed/8892420 1996

Parents’ difficulties and information needs in coping with acute illness in preschool children: a qualitative study http://www.bmj.com/content/313/7063/987 1996

The role of felt or enacted criticism in understanding parent’s help seeking in acute childhood illness at home: a grounded theory study. http://www.ncbi.nlm.nih.gov/pubmed/22137590

Shame. How it affects patients and their relationships with health care professionals. https://abetternhs.wordpress.com/2012/11/16/shame/

What is an emergency? John Launer

Conversations inviting change. John Launer