#hellomynameis

card

If you haven’t been following the wonderful Dr Kate Granger on twitter, #hellomynameis is her bold and brilliant attempt to get healthcare workers to introduce themselves. She was admitted to hospital with a serious medical condition and was seen by a series of doctors and nurses of different grades, none of whom told her their name.

Being ill, or even thinking that you might be ill, is anxiety provoking – it stops you thinking clearly, it makes it very hard to remember almost anything, and some of us, myself included, have problems remembering names at the best of times.

Kate asked for some ideas to give #hellomynameis some traction.

I think every NHS worker, doctors in particular, should carry some cards with their name and position and contact details and give them to the patient or relative/ carer so that they know who they have seen. My father has several different medical conditions and can never remember after an appointment if he saw the consultant, a trainee or a nurse specialist, let alone their name.

My patients are the same, they come back from their outpatient appointments confused by what they’ve been told about their disease and the plans for management and can almost never remember who they’ve seen.

Patients who don’t have their own GP frequently complain that they see a different doctor every time and cannot remember who it was they saw last time, but wouldn’t mind seeing them again, if only so they don’t have to repeat their story.

If in each of these situations the doctor had given the patient a card, then the patient or relative or GP would be able to ask to speak to the right doctor in case of concerns or complications.

Often during an in-patient stay, and sometimes during an outpatient visit patients meet a bewildering number of doctors. To mitigate the confusion of having a box-full of cards to take away, hospitals should take responsibility for the cards which should all include the name of a consultant, so that lines of responsibility are clear.

Once it started to become normal practice, patients would start asking if they weren’t offered one. It would improve continuity of care and accountability, increase trust, reduce anxiety, save time and embarrassment.

For more on #hellomynameis click on names

How to save the NHS

NHS SOS Edited by Raymond Tallis and Jacky Davis. Oneworld publications

nhs-sos-jpeg

Available from Keep Our NHS Public 

There are few things that staff can agree on in an organization as vast and multi-cultural as the NHS, but there are two fundamental points that almost everyone from porters and pathologists to receptionists and senior management can agree on, a dislike of constant government interference and a belief that healthcare should be provided according to need. The coalition’s NHS reforms managed to combine a massive government imposed re(dis)organization with the end of the legal duty of government to ensure healthcare is provided where and when it is needed. Given this, one wonders how they got away with it. NHS SOS explains how it happened, why it matters and what we can do about it. It documents the failures of democracy, the penetration of government by lobbyists, the uncritical regurgitation of government rhetoric by the media and the inability of the medical professions to mount a united front.

The principles underlying the reforms are that the traditional model of medicine as a vocation, health care as a public good and the sick patient as a vulnerable citizen who has a right to care and for whom the state has a duty of care are no longer fit for purpose in an era of market values where medicine is a business, health care a transaction and the sick patient a customer. Professor Allyson Pollock has been sounding the warning bells of NHS privatization since some members of the coalition were still at school and has co-authored a chapter with researcher David Price. They explain that the first clause of the Health and Social Care Act 2012 has repealed the duty of the Secretary of State to provide or secure a comprehensive health service. They assert the pivotal significance of this,

This repeal was the fulcrum of the free-market agenda, since this long-standing duty compelled the minister to allocate resources according to need instead of leaving allocation to market forces and unaccountable organisations.

Theirs, the seventh chapter of the book is the clearest statement of why it is so important to defend a publicly funded and provided, planned and accountable National Health Service, and is a good place to start for anyone still wondering what all the fuss is about.

Stephen Dorrell, past Conservative Health Secretary and present chair of the Health Select Committee was right when he said that the NHS reforms were revolutionary because of the £20bn cuts to funding by 2015 – unprecedented in any national healthcare system anywhere in the world and evolutionary because they continued the process of privatization that started roughly thirty years before. The long view is shared by the contributors to NHS SOS most of whom have been working in and campaigning for the NHS for long enough to harbor no illusions that this is a problem merely of the coalition’s making. One of the contributing editors, Raymond Tallis notes in his introduction that conservative Ken Clarke said in 2008,

Labour secretaries of state have got away with introducing private sector providers into the NHS on a scale which would have led the Labour Party onto the streets in demonstration if a Conservative government had ever tried it. In the later 1980s I would have said it is politically impossible to do what we are now doing. I strongly approve.

The righteous anger that comes across in NHS SOS comes from the knowledge that the reforms will punish the poor, the elderly and the chronically sick and will harm the rest of us when we are most vulnerable. I’ve recently been studying medical professionals’ accounts of their own illnesses. What is particularly striking is just how vulnerable they feel. Serious illness is unpredictable, frightening and exhausting, decisions that seem clear when we’re feeling healthy and confident are anxiety provoking and sometimes overwhelming when our own precarious health is at stake. No amount of re-branding patients as consumers, nor the rhetoric of patient choice used to justify the reforms can change this.

This book is not so much a lament for the NHS as it is for democracy.  Democracy, the contributors of NHS SOS argue in painstaking detail, is in crisis, from political parties to unions and academic royal colleges and the media; all are charged and found guilty – there is too much lobbying, too many vested interests, and amongst those uncontaminated by these sins, too little understanding of what is at stake.

It is all too easy to feel dismayed by what has happened and is happing to our NHS, but the strength of the book, and something that comes across strongly if you are lucky enough to hear any of the contributors talk – and they are all still campaigning, is their indefatigable and contagious passion for genuine public engagement upon which a national health service that puts patients before profits depends. The final section of the book is a guide to ‘What you can do to save the NHS’. In essence it’s a guide to how to become a politically engaged citizen. It would appear that we are only going to be able to save the NHS if we can save democracy while we’re at it.

Other reviews:

Guardian

Socialist Health Association

Open Democracy

NHS Managers

Forgiveness Society Lecture 2013

Last year’s lecture made a huge impression on me. Although I didn’t attend, I did watch the video, which is at the end of this poster, several times. I wrote a blog about it, Forgiveness, Narrative and listening, and I continue to think about how important it is to engage seriously with forgiveness and to practice forgiving. Compassionate care depends on the ability to forgive each other and our selves and to learn from our mistakes. I’m very pleased to be attending this year.

Here is a summary of this year’s lecture compiled from twitter. I will write my next blog about empathy between doctors and patients.

forgiveness“Erosion of empathy is a state of mind that can be found in any culture”

The Forgiveness Project’s Fourth Annual Lecture 2013

Zero Degrees of Empathy: Exploring explanations of human cruelty & kindness

Tuesday 17th September 18:45 20:30 (Doors open at 18:15)

Ondaatje Theatre, Royal Geographical Society 1 Kensington Gore, SW7 2AR

For more information visit: theforgivenessproject.com/event-2013-annual- lecture

Simon Baron-Cohen, Professor of Developmental Psychopathology at the University of Cambridge gives the keynote speech at The Forgiveness Project’s fourth annual lecture. This will be followed by a panel discussion with Mary Foley, Peter Woolf & Marina Cantacuzino, Chaired by Fergal Keane.

Mary Foley’s daughter was murdered in 2005 in an unprovoked attack. She has since corresponded with her daughter’s killer. Mary has shared her story in The Forgiveness Project’s RESTORE prison programme for the last five years.

Peter Woolf was a career criminal until 2002 when he broke into the home of a businessman, resulting in a three year sentence. During his sentence Peter met his victim through a restorative justice conference. Since then Peter has devoted his life to promoting restorative principles.

Marina Cantacuzino started collecting personal stories of atrocity and terrorism in 2003 in the lead up to the Iraq war. The stories formed a body of work in the celebrated F Word exhibition and led to Marina founding The Forgiveness Project.

All speakers are available for interview

The Forgiveness Project is a charitable organisation that uses real life stories to explore forgiveness in the face of atrocity, working with the public, schools, prisons, faith communities, and with any group who wishes to explore a way out of conflict, either in a wider political context or within their own lives.

For more information contact: info@theforgivenessproject.com | Tel: +44 (0)207 821 0035

Video from last year’s lecture

Forgiveness, Narratives and Listening. My blog in response to last year’s lecture.

How doctors respond to chronic pain

6a00d8341bfb1653ef0192aace21ed970d-500wiFrida Kahlo, The Broken Column, 1944

That [Kahlo] became a world legend is in part due to the fact that … under the new world order, the sharing of pain is one of the essential preconditions for a redefining of dignity and hope. John Berger

 Please don’t come back!

My forehead thumped down on my desk after a ten minute appointment that had stretched out to over half an hour, I felt completely exhausted and still I had another 17 patients to see and I was now running 25 minutes late. It wasn’t just that I felt exhausted, I felt useless and demoralized and more than that, I felt angry, really pissed off.

I had spent the last 30 minutes listening to Sharon describe her pains, which shifted from the somatic – how they feel, to despair – how she feels, and anger – how she feels about me. Why didn’t I know what was wrong with her? Why didn’t I refer her for more investigations? Why didn’t I send her to a [another] specialist? Why didn’t I listen? At some point I tried to introduce the idea that perhaps a pain-psychologist might help but this merely ignited the oil I’d been trying to pour on troubled waters. “You don’t even know what’s wrong with me and now you’re trying to tell me it’s all in my head, you’re not listening to me!” she all but screamed at me, tears welling up in her eyes. “No, no, no, not at all!” I actually held my hands up in front of me in self-defence, “but pain, whatever the cause, is always emotional and physical.” I believed what I was saying as I dug myself deeper into a hole I wasn’t going to dig myself out of. She was in fighting form and I was floundering. She took advantage, “You’ve done nothing for me, nothing! I want to see someone else.” I’ve been her doctor for almost 10 years and have seen her health deteriorate dramatically, her marriage take the strain and recover, her children in and out of illness and her husband through his redundancy and depression and more. I’d visited her at home and referred her to rheumatologists, physiotherapists and a pain clinic. I felt like I had nothing else left to offer. Her killer blow left me speechless. “I don’t know what to say,” I admitted, defeated, barely able to maintain eye-contact. She stood up and left.

The sufferer is in a state of high alertness and of anger looking for a cause. What strikes me is that (in my case anyway) anger comes before the pain: a wash of strong, predictive, irritation emotion that I don’t feel at any other time. Hilary Mantel

I’ve had this consultation in various forms too many times to count and I’ve discussed the problems with colleagues enough to know I’m not alone. Why then is it so hard for doctors and patients to cope with chronic pain?

Restitution and chaos

Yet most people who decide to become doctors respond to a deep intuition about life and their own lives. To become a doctor implicitly places us on the side of those who believe that the world can change – that the chains of pain and suffering in the world can be broken. For every medical act challenges the apparent inevitability of the world as it is, and the natural history of illness, disability, and death. Every antibiotic, every surgical intervention, every consultation and diagnosis becomes part of an effort to interfere with the “natural” course of events. Thus, at a profound, even instinctual level – because it precedes rational analysis – people become physicians to find a way to say “no” to disease and pain, and to hopelessness and despair – in short, to place themselves squarely on the side of those who intervene in the present to change the future. Jonathan Mann

This moving statement helps to explain why responding to our patients pain, especially chronic pain for which we emphatically cannot say “no”, is such a challenge. We are naturally solution-focused and the stories doctors like to tell about our work and our patients like to tell about their illnesses is a ‘restitution narrative’ in which illness is overcome and good health restored. We find it difficult to describe alternative narratives and this leaves us and our patients with chronic pain deeply frustrated. Doctors who cannot make their patients better, or even relieve their symptoms, suffer crises of identity and purpose and seek to avoid the situations that make us feel like this. In cancer care, barely 2% of spending is on palliative care and the proportion is even less for other diseases where suffering is at least as unpleasant and prolonged. Doctors have traditionally abdicated responsibility for the relief of suffering to nurses and now we’ve created specialist pain and palliative care services to do this difficult work for us. And yet our patients still come back to us. And then what happens? Instead of restitution we end up with chaos. In a chaos narrative, patients and doctors are stuck. According to medical sociologist Arthur Frank, “people live chaos, but chaos cannot in its purest form be told”, “if medical communications often fail people living in chaos, it is equally true that living in chaos makes it difficult to communicate”. Doctors and patients with chronic pain often find ourselves lost for words as I did with Sharon. This is one reason why we stop talking altogether and resort to questionnaires from which we choose words like burning, aching, sharp, dull, stabbing, gnawing, shooting, throbbing etc. instead of exploring narratives.

Another patient came in to see me, full of anger and frustration. Over and again she said how sick she was of explaining to other people why she couldn’t come out, help out or do the things she used to do. I hardly had a chance to speak, every now and again she challenged me to offer her an investigation or a treatment she hadn’t tried that would relieve her pain or chronic fatigue. I knew her well, but had failed her several times before and she no longer saw me as her usual GP. As gently as I could I asked her to describe why it was such a struggle to explain how she felt and she said that she had given up and how isolated she was. I said that in my experience this was all too common and asked if I could show her something that might help. When I showed her the Kahlo picture (above) she burst into tears.

Chronic pain extends to the limits of language and beyond. This was the first time I’ve tried showing a picture to a patient – and it felt very odd, it’s not in the NICE guidelines for chronic pain, but having researched this essay I was acutely aware of how words often fail. The tension in the room was relieved when words were no longer necessary.

Listening to accounts of pain

Patients’ accounts of pain are valued by doctors for the contribution they make to a diagnosis, to help, for example distinguish between the recurrent, severe, unilateral headaches lasting up to 3 days with nausea that typify migraines and the recurrent, severe, unilateral headaches with a watering eye that can last for a few weeks, that typify cluster headaches. I remember vividly a lecture from a distinguished neurologist who explained that we could diagnose headaches by watching him listen to a patient’s history.  Listening to a patient describe a ‘feature-full’ migraine, he would be alert and interested, but listening to a patient describe an equally disabling, but ‘feature-less’ chronic tension headache, the neurologist would look bored and distracted. Doctors often loose interest once they’ve got the information they want.

We are taught to take a clinical history by listening selectively to our patient’s stories to remove the particular, subjective features, which are deemed irrelevant to the diagnostic science of medicine.

I learned early in my life that a pain is almost never just a pain. The ripples spread from the nervous system into the sufferer’s whole life. If you stub your toe or burn your finger, it hurts but it’s quickly over. Anything more complicated – and especially the kind of pain that is recurring or chronic – impacts on the patient’s personality and relationship with the world. Pain does not happen in a laboratory. It happens to an individual, and there is a cultural context that informs the individual’s experience’. What a pain is, and whether it matters, is not just a medical question. Hilary Mantel

Philosopher Havi Carel uses the term “epistemic injustice” to explain the gap between what doctors want to know and what patients want them to know. Our refusal to pay due attention and respect to our patients’ account of suffering is a “wrong done to someone specifically in their capacity as knower”. At its core is the “denigrating or downgrading of [patients] testimonies and interpretations which are dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming”. All of which must (ought to be) be familiar to doctors who have struggled with patients in chronic pain.

Patients give their bodies over to doctors and hospitals only to encounter inattention and indifference, not because they cannot express their suffering, but because their language is unvalued and unrecognized in medical culture.

Doctors are taught to be sceptical of patients’ accounts, treating them as unreliable, insufficiently articulate, and subordinate to their own interpretation. But a degree of scepticism is necessary, not simply because accounts are sometimes inconsistent and inauthentic, but because accounts of suffering serve a multitude of context-dependent purposes and warrant a wide range of responses, for example, not everyone wants sympathy or action.

For patients in chronic pain questions such as, “Why me? Why now? Why does is hurt so much? Why can’t you tell me what’s wrong? Why can’t anyone help?” – and, just as important, their own, tentative answers to those questions – still need acknowledging even if they cannot be answered. When Sharon accused me of not listening to her, the problem was not simply that I was not listening, but that I was listening in the wrong way, I had failed to acknowledge her suffering and she didn’t believe that I believed her. In order to ask the right questions about pain we have to unlearn what we have learned about taking a clinical history; we cannot presume to know about suffering from a clinical history.

The pain with no name

The pain clinic, neurosurgeons and psychologists discharge patients when their course of treatment is over, relieving them of patients for whom “nothing more can be done”: “I am discharging this patient back to your care”, “surgery was not indicated”, “your patient wasn’t suited to the psychological milieu”, “no cause for your patient’s pain was found”, “serious pathology was excluded”. As medicine becomes more specialized and fragmented, it is increasingly common for patients to be discharged back to the GP with the specialist satisfied that their organ of special interest is not responsible for the patient’s symptoms: “non-cardiac chest pain”, “functional abdominal pain”, “referred knee pain”, “mechanical back pain”. Our patients are rarely ever satisfied with the lack of diagnosis and the GP remains to face the patient’s pain and frustration. GPs are the ones who have to care for patients for whom “nothing more can be done” or for whom, “no cause for their pain can be identified”.

On the psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words, shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name it has an independent existence from them. They can now struggle of complain against it. To have a complaint recognized, that is to say defined, limited and depersonalized is to be made stronger. John Berger

Brenda recently joined our practice. “Doctor, I have to tell you, I have cancer and a headache and I’m not worried about the cancer.” It was the first time we had met and I was the first doctor she had seen in years. “I have seen about the cancer on the telly, and I know that a woman of my age shouldn’t have no bleeding and that means it’s cancer and they’re going to do an operation and I’ll be ok.” This is exactly what she said and though it’s unusual that someone is so direct, it serves my point well. “It’s the headache I cannot stand doctor, what is the cause of it?”

Pain we cannot explain is frightening because of what it might be. Even though there is little or no relationship between what we can see from scans of your knees or back and the amount of pain in you’re suffering we make good use of the therapeutic value of explaining your pain in terms of arthritis or a slipped disc. Brain scans are of no use at all for the vast majority of headaches. The resulting anxiety is felt most acutely by patients, but for doctors dealing with headaches, a great deal of the variation in specialist referrals is due to our own inability to cope with uncertainty.

The uncomfortable truth is that most of the time we just don’t know why pain hurts so much.

[Pain is] … a Cartesian dualism by its subdivision into “sensory” and “psychological”. This is an intellectual artifice invented to preserve a concept of divided brain and mind. There is not a scrap of physiological or psychological data to support the dualism. (Wall see Diski / Jean Jackson essay)

In seizing upon simple explanations we contribute to the shame and stigma felt by people suffering chronic pain. Faced with chronic pain from undiagnosed endometriosis, author Hilary Mantel experienced this:

I was aware that my condition was exacerbated by stress, and I knew that if I confessed to this, stress would be blamed for everything … besides, every visit to every doctor would begin with a lecture about my weight.

The loneliness of pain

I think therefore I am in pain quickly becomes I think therefore I am alone. Jenny Diski

“I’ve had this since university, but none of my friends know about it.” Toby, a 27 year-old accountant looked fit, athletic and confident. He was asked to attend the surgery because everyone on our list with inflammatory arthritis has to be assessed for his or her cardiovascular risk factors. He has arthritis in his left knee. “Do you think I’ll ever be able to play tennis again?” he asked me. This was yet another ten-minute consultation that extended well beyond its brief and timeframe. The last time he played tennis was at university, six years ago. “There are weeks when I don’t see anyone except at work, I can’t stand in a bar, dance in a club, or even walk anywhere. I don’t want anyone to see me when I’m like that.” “So what do you do?” I asked, “Nothing”, “Nothing?” “I just stay at home watching TV, I don’t even answer the phone, I don’t want to have to explain or make excuses. After a while, people stop asking.”

“Since you ask, I do still get headaches, almost every day,” I interviewed my wife for this essay. “Rarely a day goes past without a headache. They’re horrendous, they’re from the back of my neck to the top of my head, they’re exhausting. If I work for a day, they’re twice as bad for the next three days. I love to swim, but twenty minutes of swimming brings on a migraine – once a week I can just about bear it, but I can hardly speak for most of the rest of the day. They make me feel irritable which I hate, so I avoid people until they settle down. They’ve been like this for years; I’ve seen GPs, neurologists, physiotherapists, massage therapists and a psychiatrist. I’ve had acupuncture and done yoga, but they’re no different now from how they were 15 years ago, and I expect they’ll be the same in another 15 years.”

People with chronic pain grow tired of telling the same story over again. There is none of the drama of cancer or an attack as in heart, gout or the runs. Chronic pain is dull and exhausting. Most of my patients with chronic pain are tired of making excuses, trying to explain why they cannot join in or help out. ‘No-one gets flowers for chronic pain’, most suffering goes on without witnesses.

(Pain) shows us, too, how those around us

do not, and cannot, share

our being: though men talk animatedly

and challenge silence with laughter

and women bring their engendering smiles

and eyes of famous mercy,

these kind things slide away

like rain beating on a filthy window

when pain interposes. John Updike (quoted in Leder)

Doctors are uneasy about spending time with the lonely. In an age of ever increasing demands for healthcare productivity, where the heavy hand of state surveillance scrutinizes the details of every clinical encounter, doctors feel increasingly anxious about consultations spent listing, bearing witness to suffering or providing comfort instead of diagnosing and treating, measuring vital statistics or giving lifestyle advice, all of which are recorded measured and paid for. How close I came to sticking to the cardiovascular risk-factor script when Toby came in, but how much more I learned by discovering about his isolation, his fears and his experience of chronic pain. It’s a tragedy of modern healthcare that we spend so much time with people who feel perfectly healthy, yet have risk-factors for disease such as raised blood pressure or cholesterol, and yet have so little time for people who are in pain all the time, but have nothing to show for it and nothing to measure.

Lonely patients are twice as likely to visit their GP, and yet the blogs and other testimonies of people with chronic pain are full of people who have given up going to their GP, often because their GP has given up on them. I know the feeling of despair when Sharon is on my appointment list, “Why does she keep coming back? What can I possibly do?” It is this despair that’s motivated this essay and driven others away.

It is little surprise that patients with chronic pain experience acutely the sense of being unwanted and unwelcome.

Chronic pain patients sufferers typically report experiences of isolation and alienation from their physicians and providers, from their care-givers, and even from their own bodies. … chronic pain sufferers rate the alienation they experience from their physicians as qualitatively worse than alienation from loved ones. Daniel Goldberg

Pain and the body

The healthy body is transparent, taken for granted. This transparency is the hallmark of health and normal function. We do not stop to consider any of its processes because as long as everything is going smoothly, it remains in the background.“The body tries to stay out of the way so that we can get on with our task; it tends to efface itself on its way to its intentional goal.” This does not mean that we have no experience of the body, but rather that the sensations it constantly provides are neutral and tacit. A good example is that of the sensation of clothes against out skin. This sensation is only noticed when we draw attention to it, or when we undress. Havi Carel

Chronic pain is a constant reminder of a broken body. In Kahlo’s self-portrait above, the white straps represent the metal corset she had to wear after she broke her spine in a coach crash as a young woman. They also represent being chained to a broken body – she cannot escape her shattered spine or the nails in her flesh. She is beautiful and sensual, but the biggest nails are over her heart because the pain of love is as real as any other, and her face is brave and stoical and yet tears roll down her cheeks. The land behind her, the context in which she stands is barren and forlorn.

Marian came in with her husband to ask if I could help with his impotence. He looked down at the floor and didn’t seem too keen to join in the consultation. I was prepared for this because we had discussed his problem when he last came in alone. It wasn’t that he was impotent, but that even when they made love as cautiously as possible, his back-pain afterwards was so severe that it was impossible for him to continue waiting tables for the next couple of days and his job, at one of London’s finest restaurants, was on the line. “Everyone who waits tables has back pain”, he explained, “so you don’t talk about it, you certainly don’t complain about it, you just get on with it. And you certainly don’t take time off for it.” Pain’s isolating tendencies have no respect for sexual intimacy.

Conclusions

My motivation for writing this essay came out of despair. My intention was to confront and examine why I felt like that and in my conclusion I will try to articulate what I might be able to do about it.

In her essay, The Art of Doing Nothing, Iona Heath explains that, “in medicine, the art of doing nothing is active, considered, and deliberate. It is an antidote to the pressure to DO and it takes many forms.” Too often when confronted by patients which chronic pain, we “do something” in order to get rid of them, we send them for another investigation or another opinion or we prescribe more drugs. I don’t doubt that this partly explains why the rates of deaths from prescription pain-killers are so high. Another reason for “doing something” is because chronic pain traps us in the present and destroys a sense of progress. “Doing something” sets us in motion again, even if we’re only going round in circles.

“Doing nothing” needs to be qualified, it is far from passive and far from easy.  Heath wrote her essay at the end of a long career distinguished by exceptionally deep and considered reflection. Instead of “doing something” we should learn again how to listen, think, acknowledge and bear witness.

Listening to stories about chronic pain makes doctors feel helpless, exhausted, anxious and at a loss for words. Paying close attention we might recognise that this is because the restitution narrative is inadequate and that we are trapped in chaos. I’ve explained how to listen for these different narratives in a recent essay about forgiveness: it’s both a warning and a ray of hope that we might be stuck in chaos for a long time (in the case I discuss, it’s 18 years). Recognising this is in itself a therapeutic opening. As a doctor I must resist the temptation to push toward this opening prematurely. The chaos narrative is already populated with others telling the ill person that “it can’t be that bad”, “there’s always someone worse off”, “don’t give up hope”; and other statements that ill people often hear as allowing those who have nothing to offer feel as if they have offered something.

To deny the living truth of the chaos narrative is to intensify the suffering of whoever lives this narrative. The problem is how to honor the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism. Arthur Frank

When Frank wrote his classic book on medical narratives, The Wounded Storyteller in 1995, he wanted to help clinicians listen to their patients. He wanted to show that the stories patients tell make a moral case for doctors to be transformed by bearing witness.

Bearing witness is different from witnessing alone. Any doctor who has felt tired or forlorn after spending time with a patient in chronic pain, understands the burden that we feel when our patients share their suffering. We know that this is hard work, indeed, compassion means ‘to suffer together with’.

Chronic pain blogger Jessica Martin offers us a mantra,

I don’t want you to save me, I want you to stand by my side as I save myself.

The word mantra comes from manas (mind) and tra (liberate). The repetition of a mantra is transformative and this captures very well the transformation that doctors need to undergo to better serve our patients with chronic pain. Finding the right balance of proximity and distance is a challenge. Too close and we project too many of our own feelings on our patients, too far and we have abandoned them.

Proximity demands recognizing that yes, the monster is in the room and that the clinician take a stand with the patient in facing that monster. The first and crucial clinical move is to express the commitment to stay with the patient, to be there to do whatever can be done. It is an enormous defect of health-care organizations that professionals often cannot express this commitment because there are constant territorial disruptions over who stays how long and does what. This structured disruption of continuity of relational care is more than an organization problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other. Arthur Frank

Writer Susan Sontag wrote about her experience of suffering as she endured two different types of cancer. She also wrote books about how we respond to images of suffering. She clearly wants her writing to give access to what is real, to create knowledge and the conditions for compassionate understanding and ethical action. Indeed, the project of many of Sontag’s best known, early essays is to protect reality from the distorting influence of representation. She wants her essays to affect and change minds and culture (see Ann Jurecic).

Frank’s final narrative is the quest. For the last two months while researching this essay I’ve been swimming in narratives of chronic pain. The chaos narrative is one that cannot be told and so it is perhaps little surprise that they are hard to find. When the story finally can be told, it is the quest. Jessica Martin’s excellent blog, ‘No-one gets flowers for chronic pain‘ is a great example.

Quest stories carry the unavoidable message that the restitution narrative will, one day, prove inadequate. Quest stories are about being forced to accept life unconditionally; finding a grateful life in conditions that the previously healthy self would have considered unacceptable.

Lastly, taking care of patients suffering chronic pain is one of the hardest things I do as a GP. It’s been my experience that patients quite frequently realise this too.

My other concern is with the doctors and nurses who have to deal with patients who are in pain. I think it must be a depressing and unsettling business, unless you are well-trained and supported. Sometimes medics seem callous, and I often wonder if they are frozen because they are afraid. People who are suffering often have an aura of unapproachability. They are cut off, turned inward, preoccupied with their inner experience. Pain requires a kind of concentration, and it’s easy to feel helpless and useless in the face of the patient’s otherness. What healers need to do is muster their own resources of personality and professional knowledge and address the fear as well as the pain: to provide reasoned reassurance, information, and above all, hope. Hilary Mantel

Hilary Mantel quotes © Copyright 2013 International Association for the Study of Pain. Reproduced with permission. All rights reserved.

References and further reading

The Buddhist practice of Tonglen uses things we find difficult to “wake up” instead of being a big obstacle. We learn patience, compassion etc. from people who push our buttons. “The job of the spiritual friend is to insult you … you need people around to provoke you so you know what you need to do.” It has been very useful in thinking about how I manage patients with chronic pain. The key is to engage with the difficult emotions and find better ways to cope rather than avoiding them.

No-one gets flowers for chronic pain. Great chronic pain blog demonstrating narrative as quest.

How to understand someone with chronic pain. Good advice via Wikihow

Spoon theory: A simple way to explain chronic pain to others

The Lived Experiences of Chronic Pain. Daniel Goldberg 2012

Asking the right question about pain: Narrative and Phronesis. Arthur Frank 2004

Illness as Narrative. Ann Jurecic 2012

Stigma, Liminality and chronic pain: Mind-body borderlands. Jean Jackson American Ethnologist 2005

Mantel_IASPInsightJune2013 copy © Copyright 2013 International Association for the Study of Pain. Reproduced with permission. All rights reserved.

How doctors respond to patients’ shame.

Do Doctors need to be kind?

Love, Hate and Comittment.

Medical advocacy.

The Compassionate Brain: Humans Detect Intensity of Pain from Another’s Face http://cercor.oxfordjournals.org/content/17/1/230.full

Pain: Science, Medicine, History, Culture. Wellcome Collection.

Why is is so difficult to find better methods of chronic pain management? This ain’t livin’ blog

Living with Chronic Pain. Indepenedent 2013

To just be a person and not a patient any more. Heart Sisters blog

Pain really is in the mind, but not the way you think. The Conversation

How Chronic Pain has made me happier. Robert Heaton

Agency without mastery, Chronic Pain and Posthuman writing

Chronic low back pain, self management from Saveyourself

http://www.scoop.it/t/chronic-pain-and-occupational-therapy

Chronic regional pain syndrome

Psychological therapies for chronic pain: very modest benefits

Psychological therapy for adults with longstanding distressing pain and disability – See more at: http://summaries.cochrane.org/CD007407/psychological-therapy-for-adults-with-longstanding-distressing-pain-and-disability#sthash.Se27mPZK.dpuf

The best evidence strongly indicates that these stuctural findings on X-Ray and MRI are not clearly related to the onset, severity, duration or prognosis of low back pain http://www.bodyinmind.org/spinal-mri-and-back-pain/

Healthtalk online: Videos of patients discussing life with chronic pain: http://www.healthtalkonline.org/chronichealthissues/Chronic_Pain

Havi Carel epistemic injustice: via Kings Fund

“The placebo effect is the effect of everything surrounding the fake pill, or the real pill,” he says. “It’s the compassion, trust, and care. It’s the ritual and symbols. It’s the doctor-patient interaction.” http://www.fastcoexist.com/3016012/the-placebo-effect-is-real-now-doctors-just-have-to-work-out-how-to-use-it

Jenny Diski: Feel the burn. LRB

Roy Porter: Pain, Rey observes, remains poorly understood because it ‘has no clearly defined status’; all divisions between ‘real’ and ‘subjective’ pain, having been founded on archaic metaphysical body/mind dualisms, are plainly problematic, not to say question-begging. LRB

The body in pain LRB

Pain Toolkit. Resources for living with chronic pain. Excellent UK website

Living With Arthritis

 

Pain. Is it all in your mind?

Understanding pain in 5 minutes

Doctors and death

“I wish she were dead”

Joy had spent most of her life trying to avoid thinking about death or dying, or anything to do with it, so wishing her own mother was dead was even more unwelcome and intrusive a line of thought than it ought to be. Repelled by anything to do with death, she had tried for the last 40 years to focus her efforts and attention on the living.

Her mother, like her grandmother, her aunt and, she increasingly suspected, her sister, had Alzheimer’s dementia. A few years ago her mother had been found hanging happily upside down from her seat-belt in her upturned mini in the middle of Peterborough. She had written off several cars and smashed the front of Top Shop. It was a wonder no-one, including her, had been killed, but at 4.30am on a Wednesday morning there fortunately weren’t many people about. Her family knew she was getting forgetful, but she seemed cheerful enough and was fiercely and doggedly determined to hang on to her independence. In the months before ‘the crash’ her car had become progressively dented as her driving became more and more erratic. A few family arguments had been simmering in that time. Joy had defended her mother’s right to independence and quality of life, whilst her sister pleaded for the safety of other road users, street furniture and pavement dwellers. Joy fought for her mother’s right to drive to the end, on the grounds that no-one had actually been hurt, whilst her sister pointed out that it was absurd to wait for a calamity. After ‘the crash’, their mother was taken to hospital where she was judged to be suffering from dementia and her car, to the family’s relief, was judged to be a write-off. Their mother never fully understood why she shouldn’t be allowed to drive again and became isolated and depressed in spite, or perhaps because of her family rallying around. The car had been her means of escape.

This afternoon, 4 years after ‘the crash’, Joy had been to visit her mother for lunch. It wasn’t one of the better days for either of them. Usually, at this time of day, Joy is less stressed, and her mother less agitated than in the mornings. In the evenings Joy is frequently as exhausted as her mother is psychotically paranoid; a little, but more than enough.

Her mother was sitting in her rocking chair looking out of the window into the garden. The sandwiches left by her carer had been pushed around on the table in front of her but not eaten. “Come on mother, you’ve got to eat something”, Joy pleaded. “Don’t tell me what to do!” her mother hissed back at her.

“Don’t fucking start.” The words came out of Joy’s mouth before she had time to hold the thought back and compose herself. Her mother grabbed the sandwiches and clenched them in her fists, she was still easily strong enough to squeeze the cheese and cucumber and white bread through her fingers. She scowled at Joy when she finished.

“What on earth is wrong with you?!” Joy protested.

“Oh go away!”

After ‘the crash’ Joy thought it best for her mother to move in with her, she was working part-time and selling her mother’s house raised enough money to pay for extra care when she wasn’t around. She was increasingly regretting the decision. It wasn’t that her mother actually needed all that much care, it was worse than that. The bouts of confusion, paranoia and rage – the rage that all seemed to be directed at her – were increasingly difficult to cope with. Physically, at least, her mother had the constitution of an ox, and whilst her dementia was slowly and steadily progressing, her fearsome determination was beating Joy down. Joy spent her evenings alone tearfully with a bottle of wine, increasingly hopeless for her future. Her mother was 80 and looked like she could keep this up for another 20 years or more, far longer than Joy could cope with.

Forty years ago in the same room in which they argued, Joy’s son Tom had died. Barely 7 months old, he had been born with severe congenital heart disease and had spent his life in hospital. When he was finally discharged, painfully thin, breathless and wheezy, all he could do was lie back and pant. His arms and legs were scarred from all the needles, his lips were tinged blue from lack of oxygen and his eyes, when they were open, looked anxious and distant. Joy and Roger, her husband, had brought Tom home in the morning. Neither of them felt prepared to be alone with him without the support of the hospital medical staff. They knew they could call for advice at any time, but were ashamed to admit they were scared and couldn’t cope. Neither of them had slept properly since Tom’s birth and on the night after his discharge they took turns to sit with him while the other lay fitfully in bed. It was a sweltering hot night, Joy remembered clearly lying on top of her bed, holding her breath so that she could hear the little squeaks and wheezes from Tom’s room.

Eventually she fell asleep. She awoke with a start, it was a shock to find herself asleep after such a long time. She sat up and held her breath … silence. She walked into Tom’s room hardly daring to breathe, and saw Roger sitting by the window, staring outside, lit by moonlight, holding Tom in his lap. For the first time in his life, Tom looked relaxed, head tilted back against his father’s shoulder, arms and legs flopped over him. For a few moments she stood in the doorway, at peace for the first time since his birth. What happened next she cannot clearly recollect. They fought, she knows that, even though the memories are of pain and fury, grief and loss, and not physical violence. The doctor who examined Tom’s body – the doctor who had never met them, never spoken to them and knew nothing of what they had been through – insisted on a post-mortem because somehow, in their – her – distress, his body, for God’s sake, he wasn’t even alive, had been bruised, and they, Tom’s parents, were under suspicion.

She had a breakdown of sorts after that. She had always considered a ‘breakdown’ to be hopelessly vague as a term, but much like ‘being beside herself’ it was an apposite term for what she went through. To the present day she bitterly resented the hospital for sending Tom home; why didn’t they tell her he was going to die? Obviously he was sick, but if they expected him to die, why did they send him home? Why? Because they didn’t want another death on their unit? Because they couldn’t cope with it? What about us, or me? Roger left soon after, we couldn’t bear to be together after that. Is it like that for hospital doctors too? Is it too much to bear to face death and bereavement? Is that driving the pressure for patients to die at home today? She couldn’t see the point of it herself.

From that day on her left breast had ached terribly. She put it down to grief for the first few weeks, but when it refused to settle, she visited her GP who arranged some tests to check her heart and a mammogram to check her breast for cancer. The tests came back fine and she accepted it from then on as a stigmata, the physical manifestation of her mental grief.

Joy sat in her car outside her office after visiting her mother, wiping tears from her cheeks and checking her make-up in the rear-view mirror. Her breast ached more than ever, punishment she believed, for wishing her mother dead.

She slipped her hand inside her bra to rub the pain away … oh Christ, no! She cursed her mother, the witch, it was her fault. It wasn’t the first time she had felt the lump, it was there last week, and the week before and she was sure it would go, but if it didn’t she would deal with it, make an appointment to see her GP, but not now, not today, not this week. She had too much to deal with already this week.

Joy got out of her car and let herself through the back door into her office, switched on her computer, straightened her jacket and checked her appearance one last time in the office mirror. Taking a deep breath, she walked into the waiting room and called in her first patient.

Further reading and inspiration:

Dr Kate Granger Extraordinary blog by doctor & terminally ill cancer patient musing about life & death

Our unrealistic attitudes about death, through a doctor’s eyes. Excellent essay via the Washington Post. Dec. 2013

Why are newly qualified doctors unprepared to care for patients at the end of life?

“Newly qualified doctors perceive that they receive little formal teaching about palliative or end-of-life care in their new role and the culture within the hospital setting does not encourage learning about this subject”

Junior doctors experience of death. Personal accounts of being with patients who die. Excellent narratives from Student BMJ

On Death and Fear: A Personal Reflection on the Value of Social Psychology Research to the Practice of Oncologists. J. Clinical Oncology. Sept. 3rd 2013

5 days: a tale of escalation creep. A tale of a hospital death, explaining why it is is so hard to die well in hospital.

Dying Matters. Blog by hospital doctor, Elin Roddy explaining how she is affected by the death of her patients.

Caring for a dying patient in hospital. BMJ article written by clinical lecturer in palliative care, Katherine Sleeman

Dying Matters. Website with award-winning films, support and end of life education for everyone

This is how you healthcare. An American death in London. Extraordinary writing, worth the subscription cost.

How Doctors Die: It’s Not Like the Rest of Us, But It Should Be

Doctors Really Do Die Differently: Research Says That More Physicians Plan Ahead, Reject CPR, and Die In Peace

Doctors’ Secret For How to Die Right. Oct 2013

How Doctors Die: Showing Others the Way NY Times 19/11/2013

Discussing and Planning for How to Die. British Social Attitudes Survey.

Shared Decision Making: Place of Death. SDM NHS Right Care

The Facts of Death. Presented by Dr John Launer

A Good Death. Richard Smith British Medical Journal

Waking the dead? Some things you should know about dying

Mortality and the imagination, talk by Iona Heath at the North West Arts and Health Network, July 7th 2013

How doctors choose to die (infographic via Passare.com)

How-Doctors-Choose-To-Die-SM

Competition, choice and quality in general practice

The evidence in favour of using competition between GP surgeries to improve the quality of patient care rests almost entirely on a 2010 report by the Competition and Cooperation Panel, a so-called: Empirical analysis of the effects of GP competition. This showed that GPs with neighbouring practices less than 500m away made fewer referrals for certain conditions and had patients who were 0.1 percent more satisfied than patients from practices without such close neighbours.

I have lived and worked as a GP in densely populated urban areas with many close, neighbouring practices for the last 12 years and so I read with interest and dismay a blog written by entrepreneurial doctor Neil Bacon on the website of one of the most respected health think tanks, The Nuffield Trust.

Bacon concluded, much like the authors of the paper, unambiguously and without criticism that, ‘everyone who truly believes in improving patient care should be arguing for increased and fully regulated competition in primary care. Fact.’

There are many problems with the CCP report, not least are the difficulties in defining quality in care, explored in detail at a recent conference I attended at Cumberland Lodge, and in brief in the British Journal of General Practice. My own practice has roughly a 30% turnover of patients a year with a list size of 12 000 patients, so over 3000 patients leave and join our practice every year. This is not unusual in inner city practices. I ask new patients why they join us. Quality, whatever that means, is not the same as ‘what matters’. What matters to a family with young children, is very different to that of a housebound elderly man with a complex neurological disorder, a busy businesswoman with an endocrine disease requiring regular monitoring or a patient preparing to undergo gender reassignment.

In my experience neither the patients I speak to, not the GPs I know behave in the way that the authors of the paper, or Bacon, assume. Nowhere in the 51 pages of the CCP paper do the authors study how, or even whether patients are choosing, or GPs are competing in the manner they imagine.

There is a contrast between the traditional model of medicine as a vocation, health care as a public good and the sick patient as a vulnerable citizen who has a right to care (and for whom the clinician has a duty of care) and a new era of market values where medicine is a business, health care a transaction and the sick patient a customer.

The formulation of the patient as a ‘rational chooser’ underpins contemporary political policy, but is contradicted by studies about the experience of illness, the nature of suffering, the practice of care and the wishes of patients.

Most of my time as a GP is bound up in therapeutic relationships with patients who have multiple, long-term conditions and/ or mental health problems. That this is the case for my practice which has a younger than average patient population, suggests that for the majority of GPs with a greater proportion of older patients this is typical of even more of their work. One of the commonest questions new patients ask is, ‘will you be my doctor?’

Relationships between doctors and patients are built up over time and involve trust and commitment on behalf of both parties. Because of the investment in time that this takes, patients are loathe to leave a doctor that they trust, even if they suspect he might not be the best doctor around. Counter to the claims of competition and choice advocates, the importance of continuity of care is being recognized as being fundamental to the safe and effective management of patients with complex multiple conditions and even in our practice, where we have 14 doctors, none of whom work more than 7 clinical sessions a week, we have made continuity of care a priority and are succeeding in making sure that every patient has their own doctor.

From the perspective of most patients, a doctor who they have gotten to trust and that knows them is more tangible and therefore valuable than some abstract notion of ‘quality’.

Fortunately for patients, doctors are motivated by a wide range of factors of which a deep understanding of what needs to be done to deliver high quality care, a culture of commitment, supporting colleagues, and education are the most important.

The introduction of clinical commissioning groups (CCGs), although greeted with great scepticism because GPs are being scapegoated for the failings of the NHS reforms, is resulting in renewed enthusiasm for these intrinsically collaborative activities. Unfortunately the funding for our CCG is only 40% of the funding that was given to the PCT (the Primary Care Trust that it replaced on April 1st 2013). My own experience is that commitments to my patients and medical students doesn’t permit me sufficient time to devote to the CCG. The future of many, if not most CCGs hangs precariously in the balance.

I believe that patient choice demonstrates that we as doctors treat our patients with dignity and respect for their values and opinions, as partners, willing and able to share decisions about their medical care. As conceived by the proponents of competition, patient choice has nothing to do with this, but instead it is to be used as a tool to promote a medical market using patient feedback websites, the like of which Neil Bacon promotes. Competition and choice risk increasing inequalities because GPs seeking to maximise their income may design services to satisfy those patients most capable and likely to exercise choice by changing practice – the young and healthy rather than the housebound, seriously ill or impoverished who need most care. Providing a minimal service to a large patient list remains one of the most profitable tactics of unscrupulous GPs.

It is both futile and inappropriate to make patient choice the servant of a medical market place and a tool for quality improvement, especially on the basis of such poor understanding of the complexities of patient choice and the quality and nature of patient care.

A shorter version of this blog is due for publication on the Nuffield Trust website today.

See also:

Berwick review: it is counterproductive to use staff survey and attitude data as a performance management tool or to compare organisations.

Competition in the NHS: Is the toothpaste out of the tube? Blog by the founding director of the Competition and Cooperation Panel

Competition in Healthcare: The Risks Blog on abetternhs

Betrayal of the NHS must end, it’s time for doctors to fight back

Reblogged from the Guardian: Written by Jacky Davis: http://www.guardian.co.uk/commentisfree/2013/jun/23/betrayals-nhs-doctors-fight-back-bma

This week hundreds of doctors meeting for the annual BMA conference in Edinburgh will debate the wreckage left by Lansley’s Health and Social Care Act. When first proposed in 2010 hopes ran high after the government promised that spending decisions would go to GPs and power to patients. But the profession is now contemplating the betrayal of those promises, as cuts lead to rationing and GPs are forced to tender out all services to the private sector. As one GP grimly remarked: “We’ve got less money, more complexity and all of the blame.”

But it is not only the politicians who have betrayed the NHS. The media, who should have asked hard questions as the Act passed through parliament, and the medical establishment, who should have stood up to the government, share the blame. It is no surprise that the Tories betrayed the NHS. In his book Never Again, Nick Timmins describes how Lansley’s initial plans for the NHS were redrafted by Oliver Letwin and Danny Alexander. Letwin, at the heart of Tory policy-making for 25 years and author of Privatising the World, reportedly told a meeting that the “NHS will not exist” within five years of a Conservative election victory, and he is close to being proved right. That the Lib Dems went along with this against the wishes of their supporters was a shocking violation of their party’s democratic processes. Without Lib Dem support, a minority Conservative government could not have passed this legislation.

It is not the responsibility of the media to blindly defend the NHS but it is their job, as Lord Justice Leveson said, to provide an “essential check on all aspects of public life” – and with a few exceptions they failed in their duty. The BBC, trusted and relied on for in-depth political coverage, frequently acted like a mouthpiece for the government, regurgitating the official mantra that the bill was about “putting patients at the heart of the NHS” and “empowering GPs”. This was still the line on the day the bill, by then the subject of a long bitter battle, was passed. Important stories, including the web of financial interests behind the bill, were ignored.

The failure of the medical establishment to recognise the dangers and oppose the “reforms” is the most difficult thing to explain. The medical royal colleges, with the notable exception of the RCGP led by Clare Gerada, were myopic and supine. They focused on details while ignoring the real threat – that it would be impossible to deliver their remit of high standards of medical training and patient care within an NHS that was being broken up and tendered out to the private sector. The BMA’s response was led by influential GPs, many of whom were naturally attracted by the prospect of holding the majority of the NHS budget. Their initial policy of “critical engagement” was pursued long after it became clear that the government had no intention of engaging. Surveys conducted by other organisations showed the profession overwhelmingly rejected Lansley’s proposals but the BMA never consulted its 150,000 members about the possibility of opposing the reforms or of a boycott of the increasingly discredited GP commissioning. If the medical establishment had been united it could have brought down bill which purported to put clinicians in charge, but the leaders of the profession vacillated, prevaricated and ultimately failed the test.

What might the BMA do to redeem its failure to fight the Act? It could begin by spending some of its considerable resources on a high-profile campaign to tell the public why the NHS is in danger and what we stand to lose if we don’t defend it. It should ensure that the NHS becomes an election issue in 2015, hold Labour to its promise to repeal the Act and back Lord Owen’s bill to restore the secretary of state’s responsibility for the NHS. It should produce evidence to counter the self-serving attacks by politicians on the service, including closures masquerading as “reconfigurations”, and it should defend its staff when they are blamed for the chaos that is a result of “reforms”. And since the holy grail of GP commissioning is turning to base metal before our eyes it should “critically engage” its members on whether they think it’s time to withdraw from the process. It should rediscover its voice as a trade union, abandon appeasement and come out fighting.

See also, the book: “NHS SOS” edited by Raymond Tallis and Jacky Davis