Moral luck, agent regret and the doctor as drug.

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

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

“There’s a little boy under the car!”

My heart stopped.

Where’s Billy?

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

“There’s a little boy under the car!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Further reading

 

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

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

 

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

 

[4] Moral Luck. Internet Encyclopaedia of Philosophy

 

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

 

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

 

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

Care dot data

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

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

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

Address: 30 Chester House. Hoxton N1 5HL

Ethnicity: white British. Religion: Catholic

Problem: Type 2 diabetes

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

No previous DKA/ last HbA1c 7.9

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

Results: Alcohol consumption 69 units/ week

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

Problem: Bereavement.

History: see under T2 DM entry

Problem: Moderate depressive episode

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

Results: PHQ9 18

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

Problem: Essential hypertension

History: see entry under T2DM

Results: BP 140/80

Problem: Tinnitis

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

Examination: ear canals clear, Webers/Rhinnies symmetrical.

Referral: Audiology

Active medications:

Acute:

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

Repeat:

Metformin 500mg. Take 2 tabs bd

Amlodipine 10mg. Take 1 tab od.

Ramipril 5mg. Take 1 tab od.

Atorvastatin 10mg. Take 1 tab at night.

Allergies: Penicillin

Recent results: 12/02/2014

Hb A1c 7.9 (marker of diabetic control)

Cholesterol 3.9

Creatinine 110 (marker of kidney function)

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

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

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

Potential risks.

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

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

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

Insurance companies.

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

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

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

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

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

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

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

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

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

Update 25/02/2014

Unanswered questions via Bengoldacre today:

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

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

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

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

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

Links:

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

NHS Choices

Care data leaflet

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

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

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

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

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

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

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

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

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

Dr Neil Bhatia. GP website about care.data

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

Alcohol unit calculator. 

When doctors become patients

It’s taken me over 20 years to appreciate just how little attention is paid in medical education to what it’s like to be a patient.

Often, only the experience of becoming seriously ill finally compels [doctors] to change their thinking, and see themselves and their work more broadly, and from a different vantage point to realize how their prior professional view is just one of several possible perspectives. When Doctors Become Patients

I decided to write this blog after reading The Other Side, by Dr Kate Granger. Kate is a young doctor and a cancer patient dying from a rare and aggressive form of cancer. She wrote The Other Side to help health professionals ‘to be better able to understand exactly what being the patient is really like and how their behaviours, no matter how small can impact massively on the people they look after.’ Her book succeeds in doing this better than anything I have experienced in formal medical education. Doctors’ illness narratives have a particular power in part because there is the inescapable sense that if it happened to ‘one of us, it could also happen to me’. But there is more to it than that. It is easy, particularly for a student or a young doctor to treat one patient’s account of illness as a strictly personal tale, with little generalisability – interesting, but of little obvious educational value. On the other hand, when an experienced doctor, even a relatively young one, writes about their experience as a patient, with an explicitly educational purpose, we pay closer attention to what they have to say.

Kate’s book is one of a growing number of books, articles and blogs written by doctors about their experience of illness, many written with similar intentions, for example, a GP writing about bipolar disorder for the British Medical Journal in 2001,

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

One of the first of these educational narratives was published in the Lancet in 1982 with a longer pamphlet version produced for use in medical education at Queen’s University Belfast. Dr Campbell Moreland was diagnosed with testicular cancer at the age of 28 and in common with many doctor-patients wanted to emphasise the importance of communication skills, especially in relation to end of life care, when treatment was no longer curative,

If a doctor’s satisfaction comes from the concept of disease/diagnosis/treatment/cure, then he or she is likely to be disappointed and may travel along the path of narrow-minded, self-centred glory. When this linear process breaks down, as in chronic relapsing illness or terminal illness, the doctor will fail to achieve job satisfaction by his own definition. The patient will expect the doctor to understand his or her situation, but since the doctor cannot, the patient will feel rejected.

He noticed this not only among the doctors who were treating him, but also among his colleagues,

As [the cancer] became more chronic, some lost interest, and … others who met me completely ignored the fact that I was ill despite my appearance … This may have been another manifestation of the denial mechanism- my colleagues denying that I was ill and protecting themselves from a reminder of their own vulnerability to disease. Doctors often forget that they are also human.

This blog accompanies a lecture that I have given to medical students at Guys and St Thomas’ and GP trainees from Tower Hamlets. I will be soon be presenting it to students at Bristol and Imperial Medical Schools. I would like to present it elsewhere and continue to develop it. From the narratives I have read there emerged four themes, which are presented as a discussion here and as quotations from doctor-patients in the slides. A great deal of what follows is also quoted from doctors who are, or were patients.

The themes:

Loss of identity

Stigma, shame and loneliness

Being seen as a person

The poor standards of care -and medical scepticism

Loss of identity

Illness comes from the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick … although we prefer to use only the good passport, sooner or later each of us is obliged, a least for a spell, to identify ourselves as citizens of that other place. Susan Sontag, Illness as Metaphor.

Doctor-patients are reminiscent of our ancient forebears, Shaman and traditional healers. They were a special caste, uniquely able to access both human and spirit worlds and act as intermediaries between them. It took special powers bought about by careful selection, arduous training and demanding rituals, sometimes-involving hallucinogenic drugs to be able to do this.

The Wounded Healer in medicine and theology is one who has special healing powers by virtue of their experience of illness.

In the traditional African Xhosa culture, becoming a healer is a process that involves experiences of illness, physical injury and pain. One of the Xhosa rites of initiation is Thwasa, a state of illness. The person experiencing it will undergo ailment and pain of body and mind and be made to suffer stomach aches, nervousness, and severe ache in the back, as well as possible periods of unconsciousness. During these attacks, this person might also become emotionally withdrawn and be troubled by dreams. Thwasa is crucial for becoming a healer. Illness is regarded in this case as the state through which communication from the person’s ancestors occurs. In Xhosa culture, it is believed that a person is chosen to protect and heal people by becoming an igqira (healer), and his ability to enter a state of Thwasa is both a part of his training and an indication that the ancestors have preferred him. The process of Thwasa demonstrates how close this tradition is to the Western concept of the wounded healer: the interpretation of illness in Xhosa society is based on the rationale that it is from experiencing illness that the person undergoing training will learn how to observe, diagnose and treat other people’s illnesses.

By contrast, in modern medicine, ‘the nature of doctors’ training results in a deep rooted sense of being special and the institutionalisation of [our] professional identity’ which (re)enforces the divide between us, the healthy doctors, and them, the sick patients. But it is not only our good health, but also our refusal to ‘give in’ to sickness that divides us.

A qualitative study of GP attitudes to their own health summarised the views of 27 GPs by means of an ‘informal shadow contract’ which emphasised this attitude,

I undertake to protect my partners from the consequences of my being ill. These include having to cover for me and paying locums. I will protect my partners by working through any illness up to the point where I am unable to walk. If I have to take time off, I will return at the earliest possible opportunity. I expect my partners to do the same and reserve the right to make them feel uncomfortable if they violate this contract.

In order to keep to the contract I will act on the assumption that all my partners are healthy enough to work at all times. This may mean that from time to time it is appropriate to ignore evidence of their physical and mental distress and to disregard threats to their wellbeing. I will also expect my partners not to remind me of my own distress when I am working while sick.

Last Wednesday as I cycled to work, I rode far too fast over the cobbles at the end of the street, barely 100 meters from my surgery. I went flying. My left hand hit the cobbles, hard. It hurt a lot more than I was expecting. I arrived and scrubbed the dirt out of a bleeding hole in my palm and asked our practice nurse to help me put a dressing on it. But most of the pain was coming from the base of my thumb, and I suspected strongly that it was fractured (broken). I had an evening surgery with 15 booked appointments; three of them were patients with severe learning difficulties here for an annual check up. So I took two paracetamol and saw my patients. I finished at 8pm and cycled home – about 25 minutes in the dark. I was too tired to go to hospital and so the following morning I went to A&E and an Xray confirmed a Bennet’s fracture and I left in plaster. I did the same thing when I fractured my scaphoid a few years ago.

A survey of British doctors back in the ’90s found that 87 percent of G.P.’s said they would not call in sick for a severe cold (compared to 32 percent of office workers who were asked the same question). In Norway, a 2001 survey revealed that 80 percent of doctors had reported to work while sick with illnesses for which they would have advised their own patients to stay home. Two-thirds of these illnesses were considered contagious. Why Doctors Don’t Take Sick Days Daniele Ofri, New York Times

Not ‘giving in’ is an important part of the way doctors think about and judge themselves. Many would deny that they judged others in the same way, but doctors who have been patients give us reason to doubt that. The less frequently referenced continuation of  Susan Sontag’s quote above is particularly perceptive,

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

Despite the biological substrate of clinical depression or the genetic underpinnings of alcoholism, many physicians still believe these disorders are evidence of a lapse of will or moral failure, especially when they appear in other physicians.

Stigma, shame and loneliness.

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

Many patients experience shame and stigma, and in one study 71% of doctors described themselves as embarrassed when seeing another doctor. Doctors with mental illness appear to be particularly vulnerable, as described by this psychiatrist with psychotic depression,

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

Anya de Longh was forced to give up her medical studies because of a rare and severe neurological disease. In her latest blog she writes about the self-stigmatisation and shame that arose when the possibility was raised that some of her neurological symptoms couldn’t be explained by her disease,

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

Shame is associated with drug and alcohol abuse, both of which are more prevalent among doctors than their non-medical peers. Shame also causes social withdrawal and isolation and stops us seeking help when we need it, because we are too strong, or not worthy;

We feel shame and we fear being judged and stigmatized so we tend to suffer in silence and carry on in a profession that prides itself on stoicism and bravado Wallace

Shame is feeling that I am not worthy of love, care and attention … Underpinning shame is excruciating vulnerability, the fear of being seen as we really are.
Brené Brown: The power of vulnerability

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

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

Loneliness

Many doctors spend so much time at their work that when they are unable to continue because of sickness, and are cut off from their busy peers, they become lonely and depressed.

The physical effects of illness compound this, as these two young doctors with metastatic cancer explain,

I had unfailing family support and the best treatment available, yet I have experienced the acute sense of isolation and, occasionally, the despair endured by many cancer patients Tertoma of the Trestis. Lancet 1982

Unpredictable, treatment-induced fatigue means I can’t reliably attend social events. I dread small talk. The inevitable “What do you do?” “I’m not working, because I’ve got cancer.” “Oh, you’ll be fine.” “Um, no, actually; I might not be. It’s quite advanced. Miracles happen, though” “Oh.” Person exits right to stiff drink. (The other version of this conversation concerns my now-permanent baldness: “But of course your hair will come back.” “Actually no.” “Oh.” Exit right. Etc.) I don’t blame people for coming to an abrupt halt in the conversation: what are they supposed to say? Before I got ill, I was exactly the same. Who wants to talk about the precarious nature of life and death when you could be networking? Social events aren’t designed to hold these kinds of conversations. Anna Donald

Seeing a patient as a person

One of the most common themes to doctors’ accounts of being patients was the importance of being seen as a person.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability Hippocratic Oath – Modern Version

One time medical student and now full-time patient, Anya De Longh described the contrast between being a medical student and a patient in an outpatient clinic,

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

Dr Kate Granger, revealed in several passages in The Other Side how shockingly often healthcare staff failed to introduce themselves, such as on this occasion when she was admitted to hospital with an infection due to complications from her chemotherapy,

I am laid on a trolley in the emergency department feeling extremely unwell. My temperature is 39 C and my pulse is 150. It is about 36 hours since I underwent a routine extra-anatomic stent exchange, and I have developed sepsis. A young surgical doctor clerks me in. He does not introduce himself by name, instead plumping for, “I’m one of the doctors” A nurse comes to administer my IV antibiotics. She does not introduce herself at all. Over the 5 day admission I lost count of the number of times I have to ask staff members for their names. It feels awkward and wrong.

In my experience, medical students rarely ever fail to introduce themselves, but once they become infected with the culture of working life, they (we) slip into bad habits.

Kate’s campaign to get us to start introducing ourselves again is called, #hellomynameis. She explains;

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

When was the last time you stopped and had a conversation with someone on the ward just for the sake of having a conversation? We all blame being too busy on not doing this but are we really? Do we not have 10 minutes to sit down and explore someone’s worries? Having a chat can be therapeutic in itself. I know this. A few months ago when I was struggling with the uncertainty of my prognosis and the effect this was going to have on my career I had a long chat with my Oncologist. There was no examination, no diagnosing, no investigations and no prescribing; just talking. And it helped. It really didKate Granger

Continuity of care, the deliberate organisation of patient care so that the same doctors and nurses attend to the patient, was mentioned by several doctors. Having a serious, complicated illness and feeling exhausted doesn’t leave patients in the mood for answering the same questions over and over again. As medical sociologist and anthropologist Arthur Frank writes, “Th[e] structured disruption of continuity of relational care is more than an organisation problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other.”

Poor standards of care and medical scepticism.

Lack of courtesy is just one aspect of poor care. Many doctors dread illness because they are acutely aware of modern medicine’s weaknesses and limitations. Albert Klitzman interviewed doctors who were patients for his book, When Doctors Become Patients,

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

Kate Granger gives another example,

The following morning I notice that MRI is written next to my name on the ward white board. At first I wonder if this is just an administrative error and it is actually meant to say ultrasound. They wouldn’t have requested an MRI without talking to me first surely. I get claustrophobic sat in the back of a three-door car so the thought of having an MRI is not a pleasant one.

The next thing I know a porter has arrived with a wheelchair to take me for the mysterious MRI. I question if it is a mistake so we read the medical notes. A discussion between my Consultant and the Gynae-Oncology team is clearly documented the previous evening suggesting an urgent MRI abdomen and pelvis in addition to the rest of the management plan. I can see that it is a completely appropriate investigation but I’m absolutely fuming she did not bother to discuss this with me. As I have no other choice I sit myself in the chair and am wheeled off to the scanner. My heart is pounding the whole way. The Other Side

After I gave this presentation to the Guy’s and St Thomas’ medical students, several described how shocked and disappointed they had been at the standards of care they had seen when they had accompanied relatives to hospital. Often it related to junior doctors trying to cover up for their obvious lack of knowledge, giving an evasive answer instead of saying ‘I don’t know’. When I fractured my finger last year I watched a junior orthopedic surgeon attempt to put a wholly inadequate splint on it and even when challenged, he persisted. Among the narratives I have read, communication skills are at least, if not more of a concern than clinical skills, as Campbell Moreland, the young GP with metastatic testicular cancer described,

In March, 1980, I underwent chest tomograms and a creatinine clearance test. I suspected lung secondaries but was not informed. I asked a junior doctor about my X-ray results. He went to the X-ray department, came back, and told me the films were normal. I know this was a blatant lie, as did he. My trust in him was irreversibly damaged. How much better had he said, “I don’t know, but I’ll find out. If it is bad news do you want to discuss it?” Junior doctors are shy of giving a patient bad news because they are afraid both of the patient’s reaction and of their consultant” Tertoma of the Trestis. Lancet 1982

The third day of admission brings me some examples of doctor’s communication skills being the worst I could possibly imagine under the most painful of circumstances. First thing today I have been crying. It is the day of the MDT meeting, I am frightened and it feels as though nobody is talking to me. I know my MRI report is available, but again no-one has taken the time to discuss this with me so I know it must be bad news.   I’m laid in a hospital bed sobbing and scared, about at the most vulnerable a patient could be. Kate Granger

Other doctors who had been patients appreciated the anxiety patients suffered whilst waiting for results,

Many ill doctors now came to identify more with their patients (e.g., getting results to patients faster); gay doctors with HIV who treated members of the gay community often encountered this issue with added urgency. Klitzman

Medical knowledge also makes doctors more aware of the limitations of medical care. Of particular note, doctors choose less intensive treatment at the end of life than they recommend for their patients.

Faced with a terminal diagnosis some doctors turn to alternative therapies and become more interested in the spiritual aspects of care.  In his academic account of doctors as patients, Albert Klitzman was particularly moved by this,

Their scientific training did not inure these physicians against irrational, nonscientific beliefs and behaviors. The degree to which “magic” and irrationality persisted in the lives of these scientifically trained doctors surprised me. They often perceived medical knowledge as overrated, and magically imbued. Despite this age of ever-increasing scientific knowledge, magic endures.

Dr Anna Donald blogged for the British Medical Journal about her experience as a patient with metastatic breast cancer. She was an exceptional academic in the field of evidence-based medicine, and yet her blogs are full of descriptions of prayer and meditation. She described the value of massage and alternative diets, and became a firm advocate of Emotional Freedom Technique (EFT) 

Conclusions

Our professional identity shapes what are often destructive attitudes towards ourselves and our patients, especially when the diagnosis is unclear, the symptoms hard to treat and the prognosis poor.

Protests from patients that doctors are too busy to talk or that we lack sympathy or empathy are often met with defensiveness and excuses, but doctors who have experienced the isolation, fear and despair of serious illness are keen to emphasise the importance of humanity in care.

Our colleagues who have suffered as patients often feel compelled to report back, and what they have been telling us has been remarkably consistent over the years. It is time we paid more attention.

I conclude with a quote from GP, Dr Liam Farrell, who wrote about his experience of, and recovery from addiction,

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

References and Further Reading:

Superb article by the late Professor Keiran Sweeny who was diagnosed with Mesothelioma, followed by video interview below. http://www.bmj.com/content/339/bmj.b2862

 General articles:

Dr Kate Granger’s blog.

Anya de Longh’s blog

Sue Eckstein’s blog

When Doctors become Patients. Book by Robert Klitzman.

Dr Anna Donald. From the Other Side. Series of blogs for the BMJ during and up to her death from metastatic breast cancer.

When GPs burn out, why does the medical profession continue to let down its own? Pulsetoday

 Why Doctors Don’t Take Sick Days  Daniele Ofri New York Times

Do you have your own doctor, doctor? BJGP 2008

The Mental Health of Doctors: A Systematic Literature Review August 2010

Stress and depression among medical students: a cross-sectional study. Med. Ed. 2005

Physicians can be better doctors by being patients. Kevin MD.

Doctors get sick too. The Lancet 2009

Helping physicians cope with their own chronic illnesses West J Med 2001

On breaking one’s neck. Arnold Relman in the New York Review of Books

How do medical students cope when illness hits close to home? Guardian Feb 10th 2014

Loss of identity

Illness as Metaphor and AIDS as its Metaphors. Susan Sontag 1978

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

The Wounded Healer as Cultural Archetype 

The wounded healer

Healing ourselves: ethical issues in the care of sick doctors

Stigma, shame and loneliness.

Doctors go Mad Too. Royal College of Psychiatrists 2013

Challenge of culture, conscience, and contract to general practitioners’ care of their own health: qualitative study BMJ 2001

Doctors’ health: stigma and the professional discomfort in seeking help Psychiatric Bulletin 2012

Shame! Self-stigmatisation as an obstacle to sick doctors returning to work: a qualitative study BMJ Open 2012

Mental health and stigma in the medical profession Wallace J.E. Health (London) 2012 16: 3

Doctors as patients: a systematic review of doctors health access and the barriers they experience. Br J Gen Pract. 2008 July 1; 58(552): 501–508.

Bulletproofcardie. A GP with breast cancer:  “the shocking hostility that some healthcare professionals display towards vulnerable colleagues”

 Doctors and depression: Guardian October 2013

An insider’s guide to depression. A GP writes for the BMJ 2001

Review of literature on the mental health of doctors: Are specialist services needed? Journal of Mental Health 2011

Being Seen as a Person

Kate Granger: Painting the Picture Blog

Anya De Longh. From Medical Student to Patient. Blog

Treating the whole patient: passing time-honoured skills for building doctor–patient relationships on to generations of doctors Medical Education Jan 2014

Continuity of Care. Needed now more than ever. Blog with references.

Poor standards of care and medical scepticism

When Doctors become patients. NY Times.

Doctors and Death. Blog with references.

Anna Donald. Blog

Further reading.

An extremely interesting time to die. Ann McPherson. BMJ

Mom at bedside, appears calm. Doctor’s description of being a mother to a sick child,

People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.

What it’s like to take and withdraw from morphine. Dr Liam Farrell.

The Disabled Medic blog

Tales of pain and healing from a physician who knows both

Mental health and stigma in the medical profession http://hea.sagepub.com/content/16/1/3.abstract

http://giasison.blogspot.com/

http://tellingknots.wordpress.com/

How having terminal cancer has made me a better doctor | Mail Online 

Doctors get cancer too. BMJ 

“When Doctors Get Sick,” by Dr. Mallika Dhawan on Vimeo

YJHM: When Doctors Get Sick: A Reprise 

When doctors get sick it ain’t pretty

When Doctors Get Sick – Google Books 

http://sydney.edu.au/medicine/alumni/radius/2009/mar.pdf

Cases – Doctor, Please Carve Out the Time to Heal Thyself – NYTimes.com

What Happens When One of the World’s Leading Breast Cancer Doctors Gets Breast Cancer? http://www.phillymag.com/articles/feature-what-happens-when-one-of-the-world-s-leading-breast-cancer-doctors-gets-breast-cancer/

Doctors as patients: book documenting mental illnesses in GPs and others:http://www.bmj.com/content/330/7505/1454.2

The relationship between resilience and personality traits in doctors: implications for enhancing well being 

What is patient experience? Suzanne Shale @ethicsconsult 

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Doctors and empathy

nelson-mandela

“My back is killing me doctor, I’ve barely been able to get out of the house for the last few days, I’ve hardly slept, I’m in agony”

“uh huh … and, um, when did it start?”

“A few days ago … I’m really worried, I’ve got two kids, I’m on my own and if I don’t get to work I don’t get paid, I’ve been in tears all morning, I can’t cope any more …”

“mmm, right, and er, have you had pain like this before?”

“yes, but never this bad, sorry -[cries] do you have any tissues?”

“oh, yeah, sure, there you go. So, um, have you taken anything for it?”

etc.

I wonder why it is that not a single medical practitioner has said to me that they are sorry to hear I am ill. Such a banal social convention: I am sorry to hear about your illness. Why does this convention cease to apply as soon as one enters a hospital ward or a doctor’s clinic? Havi Carel, Illness.

When I read this, barely three months ago, I pulled up, like a race-horse in front of a fence that I expected to clear without breaking my reading stride. “She’s talking about me!” In my haste to make a diagnosis, rule out a serious cause or uncover my patients’ ideas, concerns or expectations, I all too rarely showed concern, expressed sorrow or sympathy. I was good at showing interest I think, but never showed a social convention so banal as, “I’m so sorry,” on giving a diagnosis of cancer, or “that sounds awful for you,” to someone whose operation went badly, or “I can barely imagine how hard that must be, tell me how do you cope?” to someone who is depressed, or, “I can see you’re frightened, it’s ok, I’m going to look after you”, to someone having an asthma attack.

I don’t think I’m a bad doctor, or even an indifferent or cruel one. But I’ve long suspected that empathy is not one of my strengths. I tested this hypothesis by asking my wife and close friends and they concurred. Sceptical about their easy agreement and this unscientific method, I completed an online empathy test, which showed that I ‘have a lower than average ability for understanding how others feel and responding appropriately’. My friends knew this already, but when I shared the results via social media (twitter) it was met with general disbelief from people who know me only through my writing.

This raises several questions. What is empathy? Are we faking it and does that matter? Why is everyone talking about empathy now? Can it be lost? Can it be taught? What is empathy for?

What is empathy?

Studies about empathy,  such as those listed at the end of this article, tend to have somewhat idiosyncratic definitions of empathy. I wasn’t surprised to discover that it has been described as ‘difficult to define and hard to measure’.

“Empathy is the feeling that persons or objects arouse in us as projections of our feelings and thoughts. It is evident when “I and you” becomes “I am you,” or at least, “I might be you.” Spiro

[E]mpathy is a multi-step process whereby the doctor’s awareness of the patient’s concerns produces a sequence of emotional engagement, compassion, and an urge to help the patient. Benbassat and Baumal

A predominantly cognitive (as opposed to affective or emotional) attribute that involves an understanding (as opposed to feeling) of patients’ experiences, concerns, and perspectives combined with a capacity to communicate this understanding. An intention to help by preventing and alleviating pain and suffering is an additional feature of empathy in the context of patient care. Hojat et al. 

In writing about the moral development of medical students, Branch describes moral behaviour in a very similar way,

[the] components that contribute to moral behaviour [are]- moral sensitivity, commitment and implementation, in addition to moral reasoning.

Many take care to make a distinction between empathy and sympathy, for example,

“Sympathy is ‘concern for the welfare of the other’, while empathy is the ability to appreciate the emotions and feelings of others” Smajdor

I looked into the crowed waiting room and saw two small children playing happily. I had been on duty for nearly 5 hours without a break and was exhausted. I had agreed to see them after speaking to their mum on the phone earlier. She said they had been up all night and were feverish and struggling to breathe. Now they were jumping up and down. I watched them irritably for a short while, I felt far more unwell than they looked. Perhaps I should keep them waiting while I made some more phone calls or checked some blood results. ‘Why are they here?’ I muttered to myself, ‘they’re obviously not ill’. My subsequent consultation was brief and brusque.

Three years later, I’m struggling. I’m at work at 7pm on Thursday night with two patients left to see. I’ve not slept in days. At home my 2 children have been run-down with colds for the last week, noses completely blocked, they’ve been getting up several times at night crying and /or climbing into my bed and then wriggling, snoring and coughing constantly. A couple of times I tried and failed to sleep on the floor or in one of their 4 foot beds. I was woken last night by a feverish, shivering child beside me. I cannot think clearly, my mind is grinding through the gears like a tractor going up the side of a mountain. It takes me twice as long to make a decision as it should and I can barely remember what my patients have told me when I try to type up their notes. Now I know something of what it’s like to be up all night with a sick child, how hard it is to make a rational decision when the night’s fog rolls through the clear light of day, of the enormous contrast between the pale, feverish, wheezing child of the night and the happy, playful child of the day.

“You look shattered”, is the first thing I say to the mum as she brings her children in. “You too doctor”, she replies. We understand each-other. The subsequent consultation was friendly and productive.

Cognitive and affective empathy.

According to psychology Professor Simon Baron Cohen it is helpful to distinguish between two types of empathy: cognitive and affective (emotional). Empathy is distributed unevenly among us, so that we can have low, average or high levels of either type. Baron Cohen’s area of research is autism and at the severe end of the autistic spectrum, people have very low levels of cognitive empathy as a result of a strong drive to systematize things. This includes attempting to systematize people’s emotions and behaviour, which cannot be clearly systematized, and so they find it hard to pick up social cues. Interestingly though, they often have high levels of affective empathy so that they are easily and profoundly moved by other peoples’ emotional states. Baron Cohen contrasts people with autism with people lacking affective empathy. In severe cases, this is characteristic of people with borderline, psychopathic and narcissistic personality disorders. People with psychopathic traits typically have high levels of cognitive empathy, which enables them to manipulate other people, but ‘they don’t have the appropriate emotional response to someone else’s state of mind, the feeling of wanting to alleviate distress if someone’s in pain, [that suggests that] the affective part of empathy is not functioning normally.’

I think that this is a very important distinction and I shall come back to it towards the end of this essay. It is important to note that the none of the studies about medical professionals and empathy make this distinction.

Why is everyone talking about empathy now? Is it being lost? And if so why?

The thought that a healthcare professional might lack the emotional response  necessary to want to alleviate distress is deeply worrying to most people. Recent high profile revelations from Winterbourne View care home for people with learning difficulties, where undercover footage showed staff repeatedly assaulting patients, and from Mid Staffordshire hospital where elderly patients were neglected, has led many people to ask whether health professionals have lost empathy and compassion. The ideas that medical professionals lack empathy and that medical education and clinical culture erode empathy have been hotly debated for years, and as the articles below suggest, the weight of opinion is that there is an erosion of empathy during the process of becoming a doctor. It is easy to think of reasons why:

  • In medical education students do not experience as much care and support from those that teach them as they experience humiliation and neglect
  • The focus of medical education is on learning  facts about diseases rather than learning how to understand people with diseases
  •  Medical education pays little attention to the social and political determinants of health
  • A lack of role models. One study found that 34% of medical students identified a lack of good role models as a barrier to learning about empathy. In the same study, 64% of students said that time pressure was a barrier. These are serious concerns in a medical culture that is increasingly time pressured and in which ever increasing amounts of education are being delivered electronically.
  • The undergraduate curriculum and the working conditions of medical staff are intensely pressured
  • Years of under-funding and under-staffing are now being compounded by cuts and targets
  • An increasingly competitive environment
  • An increasingly threatening environment: Threats cannot make healthcare workers more compassionate
  • The loss of continuity of care which is essential for relationships to develop between patients and professionals

Empathy and the hidden curriculum

The culture of medical education, as distinct from the subjects taught, is referred to as ‘the hidden curriculum’. It is here that behaviour or virtues are learned, as distinct from the ethics taught in the lecture theatres:

… medical training above all else involves the transmission of a distinctive medical morality… To recognise medical training as a process of moral socialisation is to acknowledge medicine’s cultural distinction between attitudes and behaviour for what it is – something much more ideological than rational. What students learn about the core values of medicine and medical work takes place not so much in the content of formal lectures … or at the bedside (medicine’s preeminent metaphor) but via its more insidious and evil twin, “the corridor”. It is time medicine started claiming ownership of both realms. Hafferty 1994

If at one level empathy can be demonstrated by a ‘banal social convention’ such as acknowledging my patient’s suffering, at another, empathy is inseparable from the moral obligation to care. When we say that doctors and nurses lack empathy, at one level we might actually mean that they simply lack basic courtesy and at another deeper level we mean that they don’t actually care.

Perhaps etiquette is a thinner version of empathy as ethicist Anna Smajdor, in an excellent paper about the limits of empathy in medical education and practice concludes. She suggests that we should settle for teaching this stripped down version of empathy. After all, it is clearly in short supply as any patient or health professional will testify. Kate Granger’s experiences of being a patient with cancer, led to her powerful call for healthcare professionals to introduce themselves. #hellomynameis has made a great and lasting impression.

What is empathy for?

Smajdor is not alone in suggesting that we settle for a limited version of empathy, Hojat et. al. in common with, and more explicitly than other authors, share the opinion that cognitive empathy is good for doctor patient relationships, but affective empathy, which is more like sympathy, is bad

Cognitively defined empathy always leads to personal growth, career satisfaction, and optimal clinical outcomes, whereas affectively defined sympathy can lead to career burnout, compassion fatigue, exhaustion, and vicarious traumatization.

I can understand the risks, I experience the emotional labour of care every day, I know what it is like to visit a dying patient at home and then see a mother with post-natal depression and another 20 patients in a single morning and then repeat work of the same emotional intensity in the afternoon, and the next day and the next. But if an excess of affective empathy can lead to burn out, then losing the ability to engage emotionally is a sign that we are burning out. Empathetic, emotional encounters are the highlights of my working life. They may be bitter-sweet, but I wouldn’t ever wish to be without them. This isn’t something that GPs need but not surgeons. After an extraordinary and profoundly empathetic account of trying and failing, to save a young man’s life, South African tauma-surgeon, Bongi concludes,

I no longer wanted to be what i am. i no longer wanted to struggle and fight in theater against the odds to stave off the inevitability of death. i no longer wanted to see the snuffing out of promise and life. i no longer wanted to think about the devastation left in the wake of the disasters that cross my table. i no longer wanted to be a surgeon. Thumbs Up

You have to read the full account to appreciate that his is not an essay about the dangers of too much empathy, but an account of the great pain that is sometimes, in extraordinary circumstances a necessary and essential part of care. It makes our work deep and meaningful. Whilst it is possible to suffer from too much empathy and over-identify with patients, I think we worry too much about this, even if there are times when we are not as composed as our patients need us to be,

“I could see you struggling not to cry and I thought God if my doctor is crying, it must be bad, really bad. I needed you to be strong then, strong for me…………” GP, Dr Michelle Sinclair

We cannot, as professionals engage with the same degrees of empathy at all times, and yet I am deeply concerned that the growing interest in teaching empathy is an attempt to pour oil on a storm brewing in an ocean of medical (and more broadly, social/political) culture. As noted above, it is neither bioethics lectures or clinical skills training that shape doctors’ moral character and empathy for their patients, but the hidden curriculum, the cultures in which we living and working. Smajdor and other seem resigned to this,

What students can learn in their ‘soft skills’ training is perhaps more akin to the McDonalds style, ‘You have a nice day now’ than to the rich nuanced and individualised conception of empathy… But this is no bad thing – as long as we are able to recognise that this is the case and ensure that our doctors have at least this basic ability. As Jodi Halpern writes:’… physicians today are increasingly caring for strangers in bureacracies’. In these circumstances we lack the resources to be truly empathetic.’ Smajdor 2010

A culture that lacks the resources to be truly empathetic, for reasons I’ve suggested above and more, destroys that capacity for affective empathy most of all. A thin veil of courtesy may be all that remains after trying to look after too many patients with too few resources for too long in a threatening and bullying culture torn between cuts and targets. As Baron Cohen notes, people lacking affective empathy share is a childhood scarred by abuse and neglect. If we treat our healthcare workers this way, what we risk creating, is no less that what Baron Cohen described above, doctors and nurses trained in high levels of cognitive empathy, but stripped of affective empathy, in essence, psychopaths.

Empathy and the critic

English professor Ann Jurecic has written an excellent book, Illness and narrative about the multiple ways in which we read and interpret literature about illness and suffering. She pays particular attention to the complex nature and often conflicting uses of empathy, for example,

when public figures such as writers, entertainers, and politicians, evoke positive or negative emotions—from empathy and love to fear, agony, and shame—these feelings serve existing structures of power. Compassion, for instance, has been claimed by politicians across the political spectrum. In his 2000 presidential campaign, George W. Bush advocated a politics of “compassionate conservatism.” He used the term to suggest that dependence on free-market economics demonstrated compassion for society as a whole and justified reduction of the social safety net for the disadvantaged. To Bush’s opposition, the phrase came to signify a cynical politics that favored the wealthy while obscuring the deepening political and economic divide between the “haves” and “have nots.”

One reason empathy can serve power is by standing in the way of understanding. This can have important implications for doctors and patients. Brene Brown, one of the most widely quoted researchers in the field of empathy, says that ‘staying out of judgement’ is one of the four qualities of empathy. Patients often complain about being judged by doctors, and teaching empathy to doctors seeks, in part to overcome this. But a lack of judgement is at odds with critical, analytical, skeptical or otherwise thoughtful ways of responding to what our patients tell us about their illnesses. The practice of medicine is especially demanding because we are expected to be empathetic and skeptical at the same time.

It is also important to note that patients do not always want or need empathy so much as thorough professionalism. In her essay about living in pain, author Hilary Mantel describes meeting a neurologist,

His hour with me stands as a shining example of good practice. His history taking was so structured, so searching, so thorough, that I felt for the first time my pain was being listened to. The consultation itself was theraputic.

In her essay, Empathy and the Critic, Jurecic warns those who want to teach empathy to doctors,

the lived complexity of empathy cannot be reduced to an outcome to be assessed, a feeling to be argued out of, or a neurological response. For these writers, empathy is instead an inexhaustible subject for the practices of contemplation, exploration,  and creation.

Rescuing empathy.

Empathy depends on how we care for and relate to one another. The importance of continuity of care cannot be stated often enough. Its failure is encountered as often in general practice as it is in outpatient departments and hospital beds. Dr Kate Granger, in her book, The Other Side written to teach doctors what they can learn from her experience of being a patient with cancer writes,

A middle aged woman breezes into my room without knocking and announces her unpronounceable name, which I have no hope of remembering as she does not wear a name badge. She says she is a Gynaecology Registrar and has been assigned presenting my case at the MDT meeting. I think this strange as I have never met her before but continuity of care has already been sadly lacking since my admission. She continues to ask me inane questions in broken English, which make me think she has not even read my medical notes. I am really not in the mood to repeat myself yet again so am polite but relatively short with her in my manner.   She then says something that I still cannot fully comprehend to this day. She asks me why I am upset to which I respond “because I’m 29 years old and I’ve got cancer”. Her astonishing reply to my frank yet accurate answer is “do not be silly, this won’t turn out to be cancer, you are too young.”

Continuity of care is part of the price paid for convenience and consumerism as the government forces on the NHS ever-increasing opening hours, spreading human resources ever thinner. It is undermined by fragmented care from multiple providers, increasing specialisation and a loss of general medical and nursing skills as professionals find lower paid assistants take over ever more of their duties,

It is an enormous defect of health-care organizations that professionals often cannot express this commitment [to continuity] 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

The relationship between doctors and patients depends on trust. This is because far more often than we care to admit, illness undermines autonomy, so that when we are sick we need to be able to hand over our bodies, our children or our elderly relatives to professionals to take care of them. The imbalance in power is inescapable, so we need to demand higher moral standards than mere etiquette. The relationship is, to borrow a legal term, ‘fiduciary’,

A fiduciary duty[3] is the highest standard of care at either equity or law. A fiduciary (abbreviation fid) is expected to be extremely loyal to the person to whom he owes the duty (the “principal“): he must not put his personal interests before the duty, and must not profit from his position as a fiduciary, unless the principal consents.

Until now, I’ve argued vehemently that patients are not customers, clients or consumers, but my detractors have stuck to their insistence that patients are customers. The process of patients becoming customers is beautifully portrayed in the satirical play, Knock, A Study in Medical Cynicism, 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) is steadily being replaced by a new era of market values where medicine is a business, health care a transaction and the sick patient a customer.

The consequence of this change in culture, as we shall see, increasingly I fear, is that empathy becomes little more than a mask to cover up and compensate for a culture that makes empathic behaviour extraordinarily hard.

It is not empathy training that we need, but a change in culture, in medical education, clinical practice and managerial and political culture, one based on mutual respect, trust, kindness and meaningful relationships,

we should emphasize that empathy is multidimensional, flawed, fascinating, and inescapably—for better and worse—at the heart of social relationships. Jurecic. Empathy and the Critic

As I concluded in my essay about kindness,

The relentless focus on efficiency and productivity in healthcare highlights the intrusion of market values into the NHS. There is an urgent need to to defend the values of social solidarity and rediscover an intellectual and emotional understanding that self-interest and the interests of others are bound together and acting upon that understandingBy committing ourselves to a change of culture that nurtures kindness we may yet rescue the NHS.

 

References and further reading:

What is Empathy?

The Empathy Exams. An actress writes about receiving empathy when playing patients during medical student exams. Wonderful writing

A Compassionate New Year’s resolution? There is no compassion left in the NHS. Or so many reports would have us believe. Guardian 28/12/2013

What is empathy and can it be taught? Spiro 1992

Commentary by Spiro 

 What Is Empathy, and How Can It Be Promoted during Clinical Clerkships? Academic Medicine 2004

Thinking about empathy

Clarifying misconceptions about compassionate care Dewar 2013

The empathic surgeon: Thumbs up 

The Empathic GP, too much empathy?

The Doctors are not alright. “Recently one of my colleagues told me that they are emotionally incapable of caring for their patients any more. How can I help them?”

How your doctor feels about you could affect your care: The Hidden Curriculum 3.30-4.00  There is the explicit curriculum – what you’re taught and the hidden curriculum, what you see in practice. Also see paper on role models and empathy. 6.00 Clinical curiosity is a form of empathy. 10.50 Most of us when we’re sick want to be taken care of

Why doctors should be more empathic, but not too much more. Scientific American 2011

Empathy lost and found

When do medical students lose their empathy? Kevin MD 2013

Help, I’m losing patient-centredness! Experiences of medical students and their teachers. ASME 2010

Empathy, lost or found in medical education?

Is There Hardening of the Heart During
Medical School? 

The Devil is in the Third Year: A Longitudinal Study of Erosion of Empathy in Medical School AAMC 2009

Reports of the Decline of Empathy During Medical Education Are Greatly Exaggerated Colliver 2011

Teaching empathy

Empathy’s blind spot. John Slaby. Medicine, Health and Philosophy.

Teaching empathy to medical students: an updated, systematic review. December 2013

Teaching the Human Dimensions of Care in Clinical Settings

The limits of empathy: problems in medical education and practice Smajdor 2010

 From detached concern to empathy. Humanising medical practice

The hidden curriculum, ethics teaching, and the structure of medical education 

Supporting the Moral Development of Medical Students Branch 2000

The Ethics of Caring and Medical Education.

Is ethical development impeded in young doctors? Branch 2001 

Care for Nurses Only? Medicine and the Perceiving Eye

Medical Students’ Perspectives on Clinical Empathy Training

Should medical schools be schools for virtue?

Better learning, better doctors, better community: how transforming clinical education can help repair society Hirsh 2013

Patients’ Trust in Physicians: Many Theories, Few Measures, and Little Data Pearson 2000

On Kindness, John Launer: “I’m not a clever doctor, but I am a kind one.”

Association of Perceived Medical Errors With Resident Distress and Empathy

Reification and compassion in medicine: A tale of two systems

Compassion in healthcare Zulueta. Clinical Ethics December 2013 It is clear that attempting to force individuals to be compassionate whilst creating systems that militate against it will fail. Trying to harmonise conflicting ideologies is also undoubtedly a very difficult task. Perhaps we do need a radical paradigm shift

Clinical Ethics

Compassion isn’t the key to NHS failings according to UEA report (above)

The last thing the NHS needs is a compassion pill. Penny Campling, author of Kindness in Healthcare

Zero degrees of empathy. Simon Baron Cohen

Test your empathy

Phenomenology and its application in medicine

Patient enablement requires physician empathy: a cross-sectional study of general practice consultations in areas of high and low socioeconomic deprivation in Scotland

Empathy flowing both ways: The empathic patient

The Developing Physician, becoming a Professional  NEJM

A prescription for what ails: We need to promote great medical education today, and this requires that we renew our focus on building meaningful relationships between three essential people: the learner, the educator, and the patient

Brene Brown, The Power of Empathy Open Culture

The Emotional Labour of Care

A response to Medicine Unboxed Voice 2013

I was 17 years old, working as a health care assistant on an elderly care ward at Winchester hospital in 1988. I remember a morning shift when I was responsible for helping six patients get washed and dressed. No matter how demented or unaware of their surroundings, we wanted every patient to be properly dressed and “sat out”. Maureen was 81 years old, suffering from Alzheimer’s disease, her confusion compounded by a recent stroke and a urine infection. She was lying in bed, calling out, “Na! Na! Na! Na! Na! Na! Na! Naaaaaa!” I pushed my trolley with a bowl of warm soapy water, wipes, fresh clothes and clean linen up to her bed and pulled the curtains around. I squeezed her hand and said, “Good morning Maureen, I’ve come to help you get ready for the day”. She looked at me and continued saying, “Na!” I pulled back the sheet and saw that she had managed to pull off her padded incontinence knickers, faeces were all over the sheets, down her legs, up her back all the way to the nape of her neck and in her hair. She seemed completely unaware. I had been working on the ward for a month and was used to bodily fluids, but the smell still made me retch. I quickly stepped outside the curtains as my mouth filled with saliva and my stomach tightened. I concentrated on my breathing for a minute and went back inside to see Maureen holding her faeces-covered hands in front of her face. I grabbed a cloth and without having time to put on gloves or an apron, wrapped it around her hands. Instinctively she snatched them away – she shocked me with her strength and left my bare-hands covered in brown slime.

Eventually, she was sitting in the chair beside her bed, washed and dressed; it was 8.30am. I had another 5 patients to go. As I pulled back the curtains, I heard an unmistakeable squelching sound and its accompanying smell. Perhaps, I hoped, I was mistaken. Other patients were lying in soiled sheets and incontinence pads, calling out for help, or too confused or weak to call. Briefly I looked at Maureen, my bag full of soiled cloths, the bowl of tepid dirty, soapy water and the clock on the breakfast trolley, slowly cooling porridge congealing. Should I pull the curtains around again, start all over again? Keep the other patients waiting? I didn’t know, I really didn’t. I closed my eyes, gritted my teeth and I moved on to my next patient.

Eight years later I was 25 years old, working as a casualty doctor in Greenwich. It was about 2.30am, there were perhaps 12 patients waiting to be seen and the time between arrival and my assessment was about 3 hours: about average for that time of the night. The call came out on the PA to say that a serious trauma call was coming in by ambulance. I made my apologies to the tearful young woman who was having a miscarriage and ran to the desk. It was only my fifth day as a junior casualty doctor and it was my first trauma call. The nurse in charge took me aside. She explained that the three young women coming in were already dead, killed in a car crash. It was my job to certify them. All I had to do was go into the ambulance and check their vital signs. I remember standing outside in the icy february night. My heart was pounding in the back of my throat when the ambulance pulled up, blue lights on, siren off. The doors opened and one of the paramedics held the door open. I climbed in. It was the first time I had ever been in an ambulance. I can only remember one of the faces, or perhaps so long after the event what I can remember is an amalgamation of all three. She was the same age as me. Her face was grotesquely twisted, like her unbroken face might have looked like an hour ago, reflected in a broken mirror. Micropore tape held her jaw and temples roughly straight. Her eyes were wide open, each staring, frightened, in different directions. Certification of death meant shining a light into her eyes and listening to her heart and lungs. Kneeling down, praying or sobbing all seemed more appropriate. I performed my duty, solemnly, terrified, utterly unprepared. I walked back into the department, straight into an angry relative, demanding, drunkenly, when – the fuck – I was going to see his wife.

This week aged 42, I finished my morning GP duty session at 1.30pm after taking 53 calls from anxious patients, seeing 10 patients face-to-face and doing one home visit. I sent one woman to hospital with an infected knee, spent 30 minutes with a man who since his teenage daughter was diagnosed with schizophrenia has lost his job, been arrested for drunk driving and bought rat-poison with the intention of suicide, and stopped half the regular prescriptions for an elderly woman who told me she wanted to stop postponing death. I was just about to slip out to get some lunch when the practice manager called to ask if she could speak to me urgently, one of my patients had complained about me and had written to the local newspaper, the MP and the parliamentary health ombudsman. I opened my door to find one of our trainees waiting outside – “Please can you help me?” she asked. My next session was due to start at 2pm, there were 15 patients booked in, I had 43 blood results to check, a boxful of hospital letters, and a message from a social worker about a patient that was expected to die. I hadn’t had anything to eat or drink, or even time to pee since I left home at 7.15.

Work like this constitutes a normal working day for health professionals, but at the same time it is completely abnormal. To do this, and to engage seriously, compassionately and with full attention and moral seriousness demands what Iona Heath has described with eloquent passion as a “Labour of Love”. It is emotional labour. If we expect healthcare professionals to treat care as a vocation and patients with empathy and compassion, we need to appreciate the enormous burden of patient-centred care. We must treat carers with the kindness and respect we expect them to treat their patients. We must make time to help them give the personal care their patients need and time to listen to them. We must listen to their concerns, their doubts, fears and distress.

Not a day goes by without someone in health policy or politics claiming that the NHS has put professionals before patients for too long, or that public service propagates professional complacency or that the threat of competition or prison is needed to improve care or compassion. These claims are profoundly depressing and so far removed from my experiences of 25 years of personal care, so insulting to all the dedicated, caring professionals I’ve worked with, and so, so wrong for patients.

Why Managing Emotion is Such a Crucial Task

Menzies Lyth, the emotional labour of care and social defences, blog by Richard Smith

Thinking about the emotional labour of nursing –
supporting nurses to care Sawbridge Y, Hewison A 2013

How do you care? Wonderful blog by a nurse about how she cares for elderly paitents.

Threats cannot make healthcare workers more compassionate

The last thing the NHS needs is a compassion pill 

Do Doctors Need to be Kind?

Iona Heath Love’s Labours Lost: Why Society is Straitjacketing its Professionals and How We Might Release Them

A very similar experience described by a newly qualified nurse

Charging patients who Do Not Attend (DNA)

Patients should not be charged for failing to attend appointments.

 Originally published in Pulsetoday 

The introduction of a fine, either in terms of a refundable fee for making an appointment or a charge after non-attendance is an example of a zombie policy. Zombie policies, like user-charges for healthcare are repeatedly resurrected and killed.

The point about zombies is that no matter how many times we kill them they keep coming back. No matter how heavily armed I am with evidence or how deadly my arguments I will not kill them for long. Never mind for that matter, how loosely assembled the zombies are; their limbs may fall off with a slight tug or a casual wallop with a shovel, or they auto-decapitate with an accidental bump on a low doorway, they rise up again with a single brainless purpose, “we … will … punish the non-attenders… ”

Evidence for the effectiveness or even cost-effectiveness of zombies in reducing the numbers of DNAs is lacking. Evidence of cost-effectiveness for most health interventions is lacking, so perhaps it’s unfair to pick on zombies. Evidence for the health gain achieved by introducing zombies is also lacking. Ditto many health interventions.

Zombies and zombie policies nevertheless have a cult following. Some evidence comes from a government e-petition set up last year which ‘suggested that patients who DNA “should be given a small fine such as £30 or £50 – this will encourage patients to attend appointments or cancel them if they don’t need them.”The overwhelmingly enthusiastic respondents who have commented raise another important zombie theme, moral outrage. Moral outrage is usually more apparent when there is no evidence to be debated.

According to the comments after the e-petition, patients who DNA are “time-wasters”, “abuse the system”, “inconvenience other patients”, “don’t care”, “cost millions” and so on. A few people tried to raise concerns about the poor, vulnerable, elderly, forgetful and so on, but were outnumbered by those cheering for the zombie-policy.

Perhaps the most thoughtful analysis of why patients do not attend psychiatric outpatient appointments concluded that, “Low and high illness severity predict non-attendance. In other words the most common reason for not attending a first appointment is feeling better but the most serious is feeling too unwell”[i] Patients with mental health problems are the most frequently encountered in general practice, accounting for 30-40% of all appointments. In deprived areas, rural and urban, the proportions are higher. In other words, Zombie policies are a good way of impoverishing people with mental illnesses that are having a bad day.

Armed with this knowledge, a more humane response to a patient who fails to attend would be to phone them up and ask them if they are ok. Patients who are contemplating suicide might discover the will to live, and patients who forgot might be invited in to discuss their failing memory, or otherwise feel adequately chastised that they don’t do it again. If you take continuity of care seriously, then the patient will have their own doctor and a call can be a powerful force for good. But is it an evidence-based intervention for reducing patient DNAs? Who knows? We also have a range of other interventions including texting, emailing, not booking appointments too far in advance, allowing patients to choose times that are convenient for them, and so on.  An appointment system called “Patient Access” claims an 80% reduction in DNA rates as well as fewer A&E attendances, reduced doctor stress and lower patient waiting times.[ii]

But zombies are by definition brain-dead and cannot be fought with arguments about making things better for patients. For them, the fundamental point is that, ‘patients who do not attend are bad, and need to be fined’. Theirs is a moral vacuum, a market society where money governs social relations.

The final zombie-lesson and the reason we cannot kill them, is that they are a reminder of what we have ourselves become, stripped away of complexity. They are an expression of our base instincts. When we are feeling overwhelmed and bunt-out and want to scream, “I just can’t take it any more!” and we are paralysed and unable to think and just want to do something to protect ourselves – instead of thinking about our patients.


[i] Mitchell & SelmesWhy don’t patients attend their appointments? Maintaining engagement with psychiatric services  Advances in Psychiatric Treatment (2007) 13: 423-434 doi: 10.1192/apt.bp.106.003202

#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