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Recording consultations

Recording consultations

Oasis

In a recent Guardian article a photograph of the audience at an Oasis gig in 1996 is remarkably dated because everyone in the crowd is watching the band instead of staring at their mobile phone while they record the action on stage. The author of the piece has written a lament to a time when people could be fully present and immersed in an event as it takes place.

No moments are too sacred to be recorded these days and that includes doctor-patient consultations.

Two facts need to be set out from the start. Firstly, as a recent article in GP magazine, Pulse explains, patients are fully within their rights to record a consultation. Secondly, where patients suspect that doctors will refuse or object, rather than arguing for their legal rights they may be covertly recording consultations.

Recording consultations, overtly or covertly may not be very prevalent, but one way or another there is nothing we can do to stop it. Like chronic pain or diabetes we have to find ways to live with it.

Opportunities

A study by Glyn Elwyn et al. surveyed views from 130 respondents following an interview about the subject on BBC Radio 4. A majority 98 (77%) said that they would like their GP to allow them to record consultations. The primary motivations for recording were to help recall and understanding and to share the recording with others, especially when the issues were complex. They sometimes recorded consultations to share with someone who could not attend the appointment. In cases like this, patients, professionals and others benefit. Like doctors, but more so, patients struggle to remember what is said in a consultation. It is especially hard when they are anxious, less literate and older.

Cyril is 81 years old and in remarkably good health considering his diabetes, peripheral vascular disease and ischaemic heart disease. He also has worsening breathlessness and mild dementia. He asks if he could record the consultation. Ideally he would like his son to come with him, but his son lives and works in Devon. Cyril thinks it would be useful to have a recording because he easily forgets what we have been talking about by the time he gets home. He appreciates the written information I supply him with, but says he likes the way I explain things. Recording the consultation seems like a good idea.

In Elwyn’s study patients wishing to record covertly had already experienced poor care or were afraid that a request to record a consultation would be refused, but most patients felt that asking permission would improve relationships with their doctor. As one interviewee said, acting covertly would lead to ‘only getting half the benefit out of the recording’. Elwyn’s study concurred with a 2014 review that concluded that patients value and benefit from recording consultations. Elwyn’s patients’ proposed solution was for recording consultations to be normalised, encouraged and facilitated by professionals.

Threats

In some cases patients have previously experienced, or fear poor quality care and wish to hold the professional to account, or have a record. One patient with mental health difficulties was told by her GP to kill herself. Unknown to the doctor, she was covertly recording the consultation and he was later struck off the medical register for three months. The doctor’s behaviour was clearly reprehensible, and it seems likely that without the recording the patient’s complaint would not have got very far.

Once or twice in a day of 40 or more consultations  I think, ‘that was a great consultation!’ Most of the time they are OK, and sometimes they are really not very good at all. According to my patient feedback around 90% of patients are satisfied with their consultations, which suggests that about 20 consultations a week are unsatisfactory, any of which could be recorded and replayed by a patient. I have, like most doctors, been subject to complaints from patients, including one that recently concluded unsatisfactorily for both parties after nearly two years of dispute. I’m pretty confident that recordings of the consultations would not have helped and might very well have made things worse. An inexperienced, stressed GP seeing upwards of 150 patients a week has a lot more to fear than a confident professor of General Practice seeing barely 20 patients a week.

A consultation is not a TED talk. It is not a carefully rehearsed performance or a public lecture. Haidet’s seminal paper, Jazz and the Art of Medicine compares a consultation to jazz improvisation. He quotes trumpeter Wynton Marsalis,

The real power and innovation of jazz is that a group of people can come together and create art—improvised art—and can negotiate their agendas with each other. And that negotiation is the art. 

My ‘great consultations’ are like this. They are psychodynamic, creative acts, performed in partnership, developing trust and understanding together. Like all improvisations we take turns to change the tempo, the tune and the allow for quiet spaces between the notes. There are moments of harmony and bum notes too, which in the context of the consultation are understandable, but on record may take on a different significance.

Emanuel and Emanuel’s classic paper describes four models of the doctor patient relationship: Paternalistic, Informative, Interpretive and Deliberative. The good doctor evolves their consulting style from primitive paternalism to an enlightened deliberative model. The premise underlying the enthusiasm for recording consultations appears to assume that the doctor has not progressed beyond the rather basic, Dr Informative stage of development. Different consultations call for differences in emphasis, with some involving more information delivery than others. As I get more experienced and confident I talk less, listen more and spend less time in the consultation delivering information that will probably be forgotten and will often be better on-line or elsewhere. Records of my consultations may not reveal all that much useful information.

Doctors recording consultations

Many GP consultations are already recorded. GPs in training video consultations with patients and watch them again with their trainers and other trainees. The RCGP guide to assessing consultations reflects the rather jazzy nature of consulting with criteria for, ‘encouraging patient contributions’, ‘responding to patient’s cues’, ‘putting information into the social context’, ‘seeking to confirm the patient’s understanding’ and so on.

At our practice and at our out of hours organisation, all phone calls are recorded in case of any mistakes or complaints. About six months ago, I took a call from a nurse at a nursing home who was worried about a breathless patient. I listened to the breathing (the patient couldn’t talk) and sent a doctor round to see them. Unfortunately the patient died shortly after the doctor arrived. It was not clear after I had listened again to the call with the director of the service and the clinical governance lead, whether, based on the phone call, I should have arranged an ambulance, so we played the recording to an educational meeting of about a dozen of the regular out of hours doctors. It was a difficult case that led to a really valuable discussion and was a powerful learning event. Doctors (like most of us) cringe at hearing our own voices, the words and phrases we come out with and so on, no matter how much we practice. Worrying a lot, and feeling guilty about the patient’s death I had also imagined that I had been less thorough in my assessment than I was. It was a relief to listen to the call again with a group of other experienced GPs. I offered to share my own case first, in part to demonstrate the importance of sharing our fallibility.

Power, professionalism and trust

It is claimed, rather uncritically by Elwyn, that allowing patients to record consultations is empowering. Firstly it is important to remember that serious illness and the associated anxiety, fear and uncertainty is dis-empowering and secondly that social deprivation, lack of education, and insecurity of housing and employment are also dis-empowering. A great deal of what doctors do such as treating disease, relieving suffering and anxiety, giving confidence and reassurance, advocating and supporting patients with housing, benefits and employment, etc. empowers patients. Patients may be empowered by recording their consultations, but in the larger scheme of things, it’s pretty small fry.

One of the biggest fears that doctors have of patients recording consultations, especially if they do so covertly, is that it represents a loss of trust on which their symbolic healing power depends. This implicit trust based on social difference, professional expertise and symbolic mysticism is important and used responsibly is a potent power for good.

But implicit trust is not enough. It must be also be explicit and earned through actions that demonstrate openness and humility, a willingness to take risks with patients and manage the consequences.

We may feel very uncomfortable with our consultations being recording (myself included) but we will have to find ways to live with it, rather than fight against it.

Sign of the times: Be careful what you say in the operating theatre. Lancet Feb 2016

First impressions

Roy sat on the chair in front of me puffing and panting struggling even to hold his head up and make eye contact. I was, as usual running late, but had no desire to hurry him. It was at least a minute before he could string words together to make a sentence.

Maria had my medical students entranced. She had come to teach them about living with COPD, a chronic lung disease, but in the context of her life of destitution, homelessness, alcoholism, depression, domestic violence and epilepsy – caused by a violent head injury – it soon became clear that COPD was the least of her problems.

Simon answered the entry-phone when I buzzed and then let me in. He works front-of-house at up-market bicycle shop, Cyclefit. He smiled, introduced himself, looked me in the eye and shook hands, “Very nice to meet you”. “You too” I replied, slightly taken aback. Unlike anyone I had ever met in a bike shop (and I have visited far more bikes shops than I can remember) he was wearing a freshly ironed shirt, waistcoat and silk tie, knotted in a perfect half-Windsor. His sleeves were rolled up, ready for hard graft if necessary, his tie was tucked out of the way so as not to get tangled in a chain. He was smart and prepared for physical work.

Simon

Barely 2 weeks later I walked into the reception area at 8am wearing wool trousers, a silk tie from the Alhambra, a woollen waistcoat from Oldtown and a fitted shirt from Thomas Pink that I had bought for a wedding a year before, but not worn since. ‘What is going on?’, I had been wondering, ‘when someone who works in a bike shop, looks smarter than a GP?’

The receptionists stopped in shock. “Wow! Look at you! What’s all this for?” I said it was for the CQC visit, which handily coincided with my new look, but then I explained about Simon and said that I wanted to make more of an effort because I thought it would make me, my patients and the people I work with feel better. The feedback from the receptionists was clear – they liked it.

Patients immediately began to comment, it seemed to lift their spirits, many commented – because I have such good continuity of care, most of my patients noticed the change, and they liked it too. I felt good, and so did they. Sartorial therapy.

What of Roy and Maria?

Roy was wearing old army boots, but the toes were so bright, you could see your reflection in them. His trousers were perfectly creased, his shirt ironed, his tie straight and his old sheepskin jacket as smart as it could be. “How long does it take you to get shaved and dressed every morning, Roy?” I asked. He looked at me and laughed. “Doc, this is the first time I’ve been out in nearly three weeks. Most days I don’t get out of my pyjamas.”

“So how long did it take you to get ready today?”

“Oh, it’s, what 7pm now… most of the afternoon, but mentally… a couple of days.”

Maria was wearing patent leather shoes, old and clearly uncomfortable and unsuitable for the cold weather. Her jeans were stiff from being recently washed and a nylon jumper with snowflakes covered a crumpled blouse. Her hair was sprayed up and her make-up thick , but carefully applied. At the end of our teaching session I tried to give her a £10 Marks and Spencer voucher – which we give to all our patients who come in to help teach, but she firmly refused. “This blouse was from M&S, but I don’t have an iron, so I have to find something to cover it up,” she told us. “I’d never get to M&S these days”. I wanted to offer her cash instead, worried about it for a bit, not wanting to embarrass her, offered it, she got embarrassed and refused, I got embarrassed. The students watched, embarrassed.

I helped Roy stand up, it seemed to take him the whole consultation to catch his breath. “You know, Roy – I’ve got to say this, but I really appreciate how much effort it must have taken for you to come here today, all that for barely 10 minutes, and all we’ve really done is chat and fine tune your medication. You look terrific, I mean, what I mean is, I can really appreciate what it must have taken for you to look as good as you do, and, well, I just wanted to say I’ve noticed”.

“Thanks doc” he said.

Patients frequently make enormous efforts when they come to see us. If we focus too narrowly on the disease there is a danger that overlook the context of their lives and the sheer effort involved in overcoming breathlessness, destitution, mental and physical exhaustion so severe that even the simplest of tasks, like washing and dressing have to be saved for special occasions.

Dressing up for my patients has made a difference, I don’t wear a suit, but I do look smart: I cycle to work, shower and dress with sartorial intent. Perhaps most patients don’t care or don’t notice, but for those that do it matters, and it is one way to show respect for my patients whose efforts, in comparison are extraordinary and humbling.

Further Reading:

Understanding the role of physician attire on patient perceptions: BMJ Open 2015

The Clothes Make the Doctor. Atlantic 2014

Better continuity of care

We do not need any more research about the benefits of continuity of care. The evidence is clear; it is associated with improved preventive and chronic care services, patient and clinician satisfaction, lower hospital utilization, lower costs, and for elderly patients, lower mortality. A recent blog shows how amazingly efficient continuity of care can be.

What we do need is better continuity of care. According to a recent BMA survey, enthusiasm for continuity of care exceeds that of any other aspect of general practice,

BMA survey

Continuity of care matters more to some patients than others, in particular those with long-term conditions, mental health problems, multimorbidity (several different conditions at the same time), during serious but hopefully shorter term conditions like cancer and during end of life care. Continuity of care makes care more person-centred because getting to know a patient as a person takes time. Continuity of care makes care more efficient because less time is spent repeating a medical history or trying to read it from the notes. Continuity of care makes medical practice safer- we identified lack of continuity as a contributing factor in delayed diagnosis of cancer and introduced changes in our practice which have improved continuity and since then have not had any delayed cancer diagnoses.

Continuity lost

Continuity has not been lost because research has shown that less continuity is superior. It has withered through neglect. Several factors have undermined continuity and these include, but are not limited to:

  • More GPs working part-time: the rest of the time they are raising children, teaching, commissioning, studying, doing specialist clinics like minor surgery, going on courses, appraising other doctors or being appraised/ revalidated, attending (often compulsory) meetings, etc.
  • An higher turnover of GPs. The traditional partnership model gave GPs a long-term interest in and commitment to their practice and they would usually stay there for the duration of their career. Nowadays there are fewer partners and more salaried/ locum doctors who change practice more frequently.
  • Lack of career structure. Practices vary in their commitment to their salaried GPs. Some encourage them to develop their career, take on more responsibility and join the partnership. Others see them as occasional labour and they come and go before patients can benefit from continuity of care.
  • A greater emphasis on access – instead of waiting to see a usual GP, policy-makers -who by and large don’t fall into the categories of patients who most benefit from continuity –have insisted that patients are seen quicker (by anyone) and have pushed for policies like 48 hour access at the expense of continuity.
  • Increasingly multidisciplinary primary care: Practice nurses are managing a lot of chronic disease clinics, pharmacists, nurse-practitioners, physician assistants, and others are seeing patients.
  • Insufficient numbers of GPs. In the UK we are several thousand GPs short of what we need to cover the population. This means that many GPs have more patients registered than they can effectively care for.

Continuity compromised

Several other factors limit the ability of an organisation to provide continuity of care. These include, but are not limited to:

  • High turnover of patients. In our practice in Hoxton we have a 25% list turnover every year. Many patients come and go too quickly to establish a relationship with a GP
  • High turnover of staff. There are far too few GPs and many practices have great difficulty recruiting and are left with short-term doctors filling in for days or weeks at a time.
  • Disease-centred incentives: We are paid for the management of disease, not the care of patients. The two are related, but can be in conflict for example, someone may be tired, anxious, stressed and lonely, but the incentives drive management around blood pressure, cholesterol, and a set of prescribed drugs and they may be sent to a specialist clinic for their disease rather than their GP.
  • Some generalist GPs have become specialists in particular areas, for example dermatology or women’s health and patients may see them instead of their own GP.
  • Some patients choose to see a different GP for particular problems, for example I do a fair few prostate checks on male patients whose usual GP is a woman.
  • Lack of commitment from the managers/ doctors in the organisation. While the large majority of GPs and patients value continuity of care, not all do. It may be that their practice demographic includes lower proportions of vulnerable patients or that they perceived the work involved in improving continuity not worthwhile. They may not believe the evidence in support of continuity to be sufficiently strong.
  • Perverse incentives. Payment by activity rewards a practice for every patient contact. A surgery that offers a walk-in service, where patients turn up and see the next available clinician may have little incentive to change.

 

Better continuity

First of all, better continuity needs commitment from the organisation. Everyone, or at least the majority of people in the organisation, including management, reception and clinical staff need to believe that continuity matters. Everyone has a role in ensuring patients meet with their own doctor or nurse. My practice made the decision to improve continuity after auditing patients who had a delayed diagnosis of cancer and found that a lack of continuity was a common contributing factor. Other practices may discover similar reasons or be motivated by their patient survey or patient participation group or the academic evidence, which I have summarised here.

The barriers I’ve described above are not insurmountable. I work in a teaching practice with  13,000 patients, 12 part-time doctors, 2-3 trainees and a 25% annual list turnover. We managed to increase continuity from 50% of all patient contacts to 80% between 2012 and 2014. It was only possible by involving everyone in the practice, especially the reception team. It is important to have on-going discussions about how it is working, especially for new doctors and patients who may not be sure what to do when they see somebody else’s patient. Two doctors have retired and 5(!) have got pregnant in the last 2 years, which has severely tested our efforts – but we haven’t given up!

Involve patients!

The majority of patients value continuity of care, and this blog written by Trudy, who has epilepsy and OCD is a great example. Every patient needs to know that the organisation values continuity and why. They need to be assured that a commitment to continuity will not bar them from urgent access when they need it. They need to know who is responsible for their care. I made business cards that I give to my patients, which really helps.

card

A commentary from the US by Reena Gupta in 2013 includes other suggestions for improving continuity of care. She begins by saying that if we want to improve continuity we need to be able to measure it and she explains that there is no single measure that is suitable for every organisation. Bristol University Centre for Academic Primary Care have come up with a continuity of care calculator that can be used with the EMIS GP operating system. Whatever system is used, what matters is that continuity is measured and the organisation (and their patients) can set goals and track progress. As we discovered when 5 doctors became pregnant, and 2 long-term partners retired, progress can slip.

Another suggestion is to maximise the numbers of days that part-time clinicians spend in their practice. Instead of working 3 or 4 sessions over 2 days, it is better to spread the sessions over 3 or 4 days.

For the last two years I have worked only 4 clinical sessions (half days) over 3 days a week. I make about 5-10 calls to my patients each day that I am in, in addition to my face-to-face appointments and I have managed to maintain continuity with about 90% of all routine appointments with my own patients. In Tower Hamlets, clinicians and academics are piloting microteams – where a patient has their own small team, rather than one specific GP.

RCGP Poster Can Micro-teams offer better continuity for multimorbidity in Tower Hamlets_Page_1

Policy makers and continuity of care

Policy makers need to be aware that continuity of care matters for the most vulnerable patients most of all. They need to be aware that continuity may be the price paid for access. Ill-considered policies like 48 hour GP access put forward by the Labour party undermine continuity of care, especially when so many GPs work part-time. Far better is to ensure that patients have on the day access for urgent problems – by phone in the first instance and face-to-face where necessary. An experienced GP can give advice and treatment or arrange for follow up with the patient’s usual doctor.

Providing continuity of care is hardest where there are high turnovers of patients and staff, where recruitment is difficult and patients are most anxious and chaotic. This is typical in deprived areas. Incentives should not reward practices for the good fortune of being situated in a well off, stable community.

Policy makers should help promote continuity of care. They can encourage patients to ask, ‘who is my doctor?’ or ‘who is in my team?’ Organisations can be incentivised to promote and measure continuity of care and show – to their patients – what they are doing about it.

As Gupta concludes, Few things in medicine have as much evidence supporting their effectiveness as continuity of care.

We should promote it, measure it, and do everything we can to make it better.

A Resilient NHS?

There was no shortage of self-confessed wounded healers at yesterday’s Wounded Healer conference. Professor Jill Maben, who gave the first keynote, confessed that she had to leave her first nursing post because of stress, and I met many doctors and nurses throughout the day who had their own personal stories. Several, like Jill Maben were presenting or leading workshops, and others were there to find better ways for themselves and their colleagues to cope.

In her research Jill followed up nurses from training into qualified posts and discovered that their ideals were sustained, compromised or crushed by the pressures of work [1]. The compromised idealists who were unable to provide the compassionate, patient-focused care they aspired to, were the most distressed and this resonated with everyone in the audience, whether doctors, nurses, managers or patients. In their excellent review of compassionate care, Cole King and Gilbert explain that whilst empathy gives us the capacity to understand another’s suffering, compassion gives us the motivation and desire to relieve it [2]. When the ability to relieve suffering is compromised, it is not only patients, but also health professionals who suffer. In order to protect themselves, Maben discovered that nurses who were suffering focused on ‘poppets’, patients who were less complex and more rewarding to care for.

Health professionals enjoy hard work. Professor Ivan Robertson, in the second keynote explained that demanding work is satisfying only if it is matched by adequate support, resources and control. I found it very helpful later in the day to apply this during a session about burnout and resilience in general practice. When GPs are feeling burned out we should ask, ‘what are we missing in terms of support, resources and control?’

Support

Many GPs feel unsupported and isolated. The intensity of work, combined with every task being delivered to the computer in the doctor’s consulting room, means that it is possible for a GP to spend all day behind a closed door and have no interaction with anyone else in their practice. We discussed strategies like enforced coffee breaks, working duty or administrative sessions in shared offices, and meeting before surgery starts to ensure everyone could get together. We all agreed that narrative-based clinical supervision for all health professionals would help [3]. The importance of different members of the practice team understanding the lived experience of each other’s work mirrored Havi Carel’s concern that health professionals should try harder to appreciate what it is like to be a patient [4]. There was a lot of enthusiasm for Schwartz rounds where anyone involved in patient care, from secretaries to hospital porters, nurses and consultants share stories about the emotional labour of care [5–8]. I have a study group of six GPs, some of whom I did my postgraduate training with over 15 years ago, that meets every three weeks on a Sunday afternoon and has been invaluable in times of difficulty.

Resources

Lack of resources is a very common complaint. The lack of money hangs over almost everything. A blog from Professor Chris Ham of the Kings Fund the day before the conference accused the Treasury of denying the scale of the NHS funding shortfall. Many of us who work in the NHS feel a mixture of fury, dismay and despair at the cuts to NHS services over which we have no control. Human resources are a related concern and in nursing the very high turnover of staff, dependency on agency staff, reliance of under-qualified staff and under-staffing are all demoralising. There is also no chance that numbers of GPs will increase sufficiently in the near future so it seems that almost everybody in the NHS is expected to work beyond their capacity. Material resources may be in short supply and we need easy access to all the necessary equipment, which is too often missing or not fit for purpose, especially IT [9].

Control

At first sight, there appears to be a contradiction because we enjoy, compared to many of our patients a lot of privilege and control over our working lives and yet are still at high risk of burnout [10,11]. In searching for the elusive resilience, it is helpful to think about the support and resources over which we do have some control and doing what we can. Nevertheless, as the imposed junior doctors’ contract with a 20% pay cut this week demonstrated, salaried state employees have little say over their terms and conditions. For GPs, who may be self-employed, the impact of our increasingly dense and numerous appraisals, inspections, compulsory trainings, care pathways and performance indicators, is tiring and demotivating [12].

Individuals and organisations

The first and perhaps most important point to note is that when healthcare professional is burned (or burning) out, they are akin a canary in a mine, they are a sign that the organisation is in trouble. Colluding with the idea that the problem lies with an individual removes the responsibility for the organisation to look at systemic issues. If we take the canary analogy, it may be possible to spot the early signs of an organisational problem before the canary keels over or the doctor goes off sick. GPs at the Wounded Healer conference bought up examples of early signs including – increased complaints about a doctor, increased referral rates, working unusually excessive hours, seeing patients outside of clinics – especially the same patient(s) frequently, failing to keep up with admin, etc. Changes to mood or personality especially cynicism and depersonalisation and physical changes like insomnia or weight change, or excessive drinking are common. Nevertheless there may be no signs at all, because when doctors are sick, work is almost always the last bit of their lives still standing. Severely depressed doctors are able to consult in ways that are not recognisably different to their patients and doctors use their ability to continue working to deny the reality of their illness. Sick doctors hang on very tightly to their resilient, healthy, cope-with-anything, professional identity [13]. Shame and stigma are felt very strongly by doctors who suffer with physical and mental illnesses and are a barrier to recognising illness and recovery [13–15]. There is a distinction between strength – to carry on regardless, and courage – to admit ones’ vulnerability – which is key to overcoming shame. Doctors who are at risk of burnout tend to feel shame acutely, deny their vulnerability and score very low on self-compassion [16].

The importance of group dynamics was bought up by Julian Lousada in the third keynote and was a recurrent theme. Bad organisations tend to scapegoat and locate their problems in an individual. We should ask ourselves, ‘what kinds of organisations have whistleblowers?’ There is a growing, if nascent interest in ‘enabling environments’ creating the organisational culture in which professionalism and resilience can flourish. One of the most important things organisations can do, and another strong theme from the conference, was to enable members to tell their stories. Accountability, according to safety expert Sidney Dekker, is to give accounts and a ‘just culture’ is one in which accounts are freely given and heard without blame [17]. If you want to understand terms like burnout and resilience, listening to stories told by those who have experienced it will teach you far more than turning to a dictionary or Wikipedia. Sharing stories and having our stories really heard is one of the most important ways we can prevent burnout and nurture resilience.

Relationship-centred care

As the conference drew to a close I found myself sitting next to Pip Hardy from Patient Voices http://www.patientvoices.org.uk/ an organisation that uses video, audio, still images and music to convey patients’, carers’ and practitioners’ own stories in a unique way. I had just seen a headline on the BBC that the new junior doctors’ contract would put patients first. ‘Putting patients first’ is a powerful rhetorical statement that carries the assumption that someone (junior doctors?) or something (the NHS?) is not putting patients first. The rhetoric serves a political purpose which is to undermine public confidence in the institution of the NHS, which is necessary if it is to be dismantled and privatised. The government will deny this intention at the same time as they portray healthcare professionals as being opposed to the interests of patients as, for example, they push for routine, 7 day services. The Francis report into failings of care at Mid Staffordshire hospital made it clear that the focus on patients was being lost because of the demands of financial control and inspections. Throughout the NHS the dead weight of market bureaucracy; finance, inspections, regulation, contracts and commissioning -imposed by government, not health care professionals – has put considerations other than patients to the fore. Government is to blame for this, not healthcare professionals.

What Pip and I concluded was that we could counter the divisive rhetoric if we could find ways to share patient, carer and professional narratives to show how intertwined and interdependent and complex healthcare can be. In his review of a book written by a doctor, Arthur Kleinman wrote of the need for writing that centres on the moral and emotional exchange in the doctor-patient relationship [18]. I sincerely hope that we have time to facilitate this. A mutual appreciation of the experiences of care can support resilience; a study of resilient GPs working in challenging, deprived areas found that they were sustained by a deep appreciation and respect for the population they served [19].

In conclusion

The conference concluded with Jon Ballatt and Penny Campling – the husband and wife team who wrote the wonderful book, Intelligent Kindness [20]. When healthcare professionals are treated with kindness and compassion, when they have sufficient resources, support and control over their work, then patients benefit and if not, patients suffer.

The problem with resilience. Excellent blog from retired psychiatrist Linda Gask criticising an over-emphasis on individual resilience

Doctors need to be supported, not trained in resilience. Important piece in the BMJ highlighting the lack of evidence for resilience training.

For more on The Paradox of the Wounded Healer, I recommend this essay by David Zigmond

My related blogs:

The Wounded Healers

The Emotional Labour of Care

When Doctors become Patients

References: 

1            Maben J, Latter S, Clark JM. The sustainability of ideals, values and the nursing mandate: evidence from a longitudinal qualitative study. Nurs Inq 2007;14:99–113. doi:10.1111/j.1440-1800.2007.00357.x

2            Cole-King A, Gilbert P. Compassionate Care: The theory and the reality. J Holist Healthc 2011;8:29–37.http://www.connectingwithpeople.org/sites/default/files/Compassionate care ACK and PG.pdf

3            Tomlinson J. Using clinical supervision to improve the quality and safety of patient care: a response to Berwick and Francis. BMC Med Educ 2015;15:103. doi:10.1186/s12909-015-0324-3

4            Carel H, Kidd IJ. Epistemic injustice in healthcare: a philosophial analysis. Med Health Care Philos Published Online First: 17 April 2014. doi:10.1007/s11019-014-9560-2

5            Point of Care Foundation. Point of Care Foundation – Schwartz Rounds. 2013.http://www.pointofcarefoundation.org.uk/Schwartz-Rounds/ (accessed 20 Oct2014).

6            Theodosius C. Emotional Labour in Health Care: The Unmanaged Heart of Nursing. 1st ed. Routledge 2008. http://books.google.com/books?hl=en&lr=&id=g4xPOKWTX2sC&pgis=1 (accessed 11 Aug2014).

7            Newman MC. The emotional impact of mistakes on family physicians. Arch Fam Med 1996;5:71–5.http://www.ncbi.nlm.nih.gov/pubmed/8601210 (accessed 7 Aug2014).

8            Luu S, Patel P, St-Martin L, et al. Waking up the next morning: surgeons’ emotional reactions to adverse events. Med Educ 2012;46:1179–88. doi:10.1111/medu.12058

9            Caldwell G. The RCPE response to Mid Staffordshire. J R Coll Physicians Edinb 2013;43:188–9. doi:10.4997/JRCPE.2013.222

10          Launer J. Power and powerlessness. Postgrad Med J 2009;85:280–280. doi:10.1136/pgmj.2009.081885

11          Zenasni F, Boujut E, Woerner A, et al. Burnout and empathy in primary care: three hypotheses. Br J Gen Pract 2012;62:346–7. doi:10.3399/bjgp12X652193

12          Zigmond D. Doctors have always been over-worked, but that’s not what’s causing the recruitment crisis. OpenDemocracy. 2015.https://www.opendemocracy.net/ournhs/david-zigmond/doctors-have-always-been-overworked-so-what-really-lies-behind-recruitment-cris (accessed 16 Sep2015).

13          Tomlinson J. BMJ Careers – Lessons from ‘the other side’: teaching and learning from doctors’ illness narratives. BMJ Careers. 2014.http://careers.bmj.com/careers/advice/view-article.html?id=20017843 (accessed 19 Jan2015).

14          Bynum WE, Goodie JL. Shame, guilt, and the medical learner: ignored connections and why we should care. Med Educ 2014;48:1045–54. doi:10.1111/medu.12521

15          Henderson M, Brooks SK, Del Busso L, et al. Shame! Self-stigmatisation as an obstacle to sick doctors returning to work: a qualitative study. BMJ Open 2012;2:e001776 – . doi:10.1136/bmjopen-2012-001776

16          De Zulueta PC. Suffering, compassion and ‘doing good medical ethics’. J Med Ethics 2015;41:87–90. doi:10.1136/medethics-2014-102355

17          Dekker PS. Just Culture: Balancing Safety and Accountability. Ashgate Publishing, Ltd. 2012. http://books.google.com/books?hl=en&lr=&id=hntr2Ok3Ed0C&pgis=1 (accessed 7 Aug2014).

18          Kleinman A. Medical sensibility: whose feelings count? Lancet 2013;381:1893–4. doi:10.1016/S0140-6736(13)61146-0

19         Stevenson AD, Phillips CB, Anderson KJ. Resilience among doctors who work in challenging areas: a qualitative study. Br J Gen Pract 2011;61:e404–10. doi:10.3399/bjgp11X583182

20          Heath I. Kindness in healthcare: what goes around. BMJ 2012;344:e1171–e1171. doi:10.1136/bmj.e1171

Patients as people and liminal medicine

Bill had booked to see me ten days ago and was here for a standard 12 minute appointment. He was the third patient in my afternoon surgery. When I scanned the names of those booked in to see me I recognised twelve immediately, two were new patients and Dr Brown had booked one of her patients in with me for a joint injection. I was ‘only’ running five minutes late.

“Couldn’t you let me finish this chapter?” Bill joked, folding up his book as he walked in.

I smiled and shook him warmly by the hand as I led him in from the waiting room. Other patients looked up. The greeting though sincere, is nevertheless consciously a public act, it’s not just for Bill, but is intended to show that this is the kind of place where doctors and nurses get to know one-another.

“You’re looking well” I commented as we walked together to my room.

I have learned to make such general observations about physical appearances, for example when someone is walking or breathing with less effort than the last time we met. In matters of psyche my patients often wear stoical and cheerful masks which they don’t take off until the sanctity of my office, and often not, even then. I probe a more cautiously there.

“Gout’s a lot better since those new pills you gave me, touch wood” he said, tapping his head.

“Would you like to stick with them?”

“Oh yes please, you said I could if they worked.”

I had made a note in his record and added the Allopurinol to his repeat prescriptions before we were comfortably seated.

“How have you been, and what can I do for you?” I began, trying to be familiar, curious and business-like all at the same time.

“How long have we got, doc?” Bill was only half joking.

“Tell me what you’ve got and we’ll see what we can do.” Healthcare is teamwork; ideally and wherever possible, we patients and professionals aspire to work together. We use the pronoun we, instinctively in general practice.

“Can we start with the pills?”

I had his medication screen already open, “Sure”.

“Not mine, it’s Pauline, she’s had dreadful diarrhoea since the hospital started her on them – remember we talked about them last time?”

Without looking at her records I knew what he was talking about. Pauline his wife had been prescribed medication for dementia, and was suffering one of the commonest side effects. Bill’s colitis causes similar problems and I imagined them hopping up and down waiting turns to get into their tiny bathroom.

“You can imagine what it’s like with the two of us”

Bill and Pauline look after each other so the side effects from Pauline’s medication affect them both. Individual autonomy may rule medical ethics, but in medical practice, autonomy is relational – serious illnesses and treatment decisions also affect families and carers.

“Oh yes, I can! Did she try some Loperamide?” I asked

“She did, but it was no good. She wants to know if she can stop them, she’s on enough pills as it is.”

I guessed she had stopped them already and he was just checking out of courtesy.

“Has she tried stopping?” I asked, suggesting in the tone of my voice that it would have been OK if she had.

“She hasn’t taken them for the last week, and she feels a lot better without them. The diarrhoea settled down in a couple of days. We’re not long for this world doc, and we don’t want to spend our last days on the loo.”

“That’s fine, I don’t blame you.” I had sensed when Pauline first agreed to try the medication that she was not keen.

“And we don’t want to try anything else, thanks, before you ask. We’re managing all right for now”

“Are you sure?” I suspected they were, but wanted to give him an opportunity to let me know if they needed anything else.

“Yeah, don’t worry, we’ll let you know.”

“Now, have you got time to take a look at my shoulder?”

“Of course” That’s what I always say. When patients say “Have you got time …?” or “Just one last thing …” it frequently introduces the symptom they are most afraid of or ashamed to talk about. They come in to test us with something safer – a sore throat, back pain or a medication query, before deciding whether we’re sensitive, serious or empathic enough for them to trust us with what’s really worrying them. Mandating only one problem per consultation has always seemed absurd; you made the appointment for pain in your breast, but vertigo – the first time you had ever had it, started a day before the appointment and when will you ever get round to talking about the bouts of inexplicable tearfulness? Sometimes the problem might be better looked at in another appointment and usually something can be negotiated. But first we need to know what it is.

“Tell me about it” I said, whilst gesturing for him to stand up and remove his shirt so I could see and examine his shoulder while we worked systematically through a clinical history and examination. He was getting dressed again barely three minutes later.

“Just one last thing”, he said, slipping off his shoe and sock and pointing at his toe. “That Vicks you said I should try for my toenail was bloody useless! Have the results come back and is there anything else I can try?” His toenail looked exactly as it had a month ago, if anything slightly worse. I looked up the mycology result and we talked about the options briefly and decided on a topical treatment.

We left my room together. “Would you like me to come round and see Pauline?” I asked. “Thanks for asking doc, no need for now, I’ll get her here, but if I can’t, don’t worry, I’ll let you know”

You can’t take a serum stoicism level. In general, older people, whose health is more precarious, tend to be more reluctant than the anxious young to visit their GP. Perhaps it is a self-reliance learned from wartime hardship, or perhaps a perfectly rational fear that new symptoms are more likely to be something serious which they would prefer to ignore. I’ve noticed an increasing fear of hospitals – fear of medical errors, hospital acquired infections and nursing neglect, fear of being a burden and a bed-blocker and of course, the fear of death. The discourse of austerity and just deserts is internalised by the elderly poor who sense that they are not worthy and it is their duty to suffer quietly. Collectively we’re abandoning them by failing to provide sufficient tax-funds for care.

The depth of relationship between a GP and his/ her patients is linked to greater efficiency as the description above shows and was confirmed by a study published last year. The study showed that more problems and more emotional issues were raised and discussed when relationships were deeper. Primary care is already adapting to a future in which GPs are responsible for much larger numbers of patients than they have previously managed. There are not, and almost certainly will not, be enough GPs in the future and the more patients we have, the less we will be able to get to know them. Ex-editor of the British Medical Journal Richard Smith appears to be looking forward to a future in which the average GP is responsible for 3000 or more patients instead of the 1,167-2,237 average full-time list we presently have or the 1000 or less, I think we should be caring for. Primary care teams will be more diverse than ever before. For the problems described above, Bill could have seen a pharmacist, a nurse, a physiotherapist and a podiatrist -perhaps three or four separate appointments and another one for his wife. Could they have spotted his easier gait? How long would it have taken them to understand why Bill and Pauline were not keen on her dementia medication? Would they know about Bill the husband and carer? Would they know about Bill’s stoicism and coping strategies, honed after caring for a daughter with Down’s syndrome for thirty years before she died? Who would know how long Bill and Pauline want to live and how they want to go?

I have begun interviewing medical students about their experiences on GP placements. One of the strongest impressions they had was about the ways in which GPs know their patients and their lives. There is an implicit assumption that shared-decision-making, self-management support and better organisation will make healthcare more patient-centred but almost nothing in the literature about the importance of knowing patients as people. Adapting primary care to a future in which ever larger, more complex teams are responsible for ever greater numbers of patients, carries the real danger of further fragmenting care, transforming patients as people who need to be known over time into problems that need to be solved as quickly as possible.

GPs are specialists in liminal medicine. In anthropology a liminal zone is the intermediate state of a rite of passage. When we travel, liminal zones occur when we are stateless, between one passport control and another. In contrast to our hospital colleagues who specialise in medicine where thresholds have to be crossed for patients to enter their field of expertise, we work in the liminal spaces between thresholds where patients as people hold dual passports for the kingdoms of the well and the sick. In these spaces biology mixes with biography, science with mysticism and a straightforward presentation offsets a precariously balanced life whose foundations are undermined by trauma and loss. Iona Heath describes GPs as gatekeepers in the liminal zones between suffering and illness and between illness and disease. The human complexity of treating patients as people in general practice is an enormous intellectual challenge, equal at least to any of the biological sciences. We should be proud of what we do and invest in it – for the sake of our patients.

If primary care is to be truly patient-centred, holistic, humane and efficient, we should be thinking seriously about what it would take to help GPs and patients get to know one-another, especially the elderly and those with long-term conditions, mental illnesses, and lives marked by poverty, tragedy and trauma whose biography is intimately bound up with their biology.

We need more GPs, not fewer, better continuity of care and more emphasis on knowing patients as people.

See also:

Relational autonomy as an essential component of patient-centred care https://www.mcgill.ca/biomedicalethicsunit/files/biomedicalethicsunit/ellshuntchambersrelationalautonomyijfab2011.pdf

Supporting patient autonomy: The Importance of Clinician-Patient Relationships http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881979/

Do we need academic primary care?

A few weeks ago I took part in a debate in which I attempted to defend the motion,

“THIS HOUSE BELIEVES THAT THE FUTURE QUALITY OF NHS CARE DEPENDS ON BUILDING A STRONGER FOUNDATION OF ACADEMIC PRIMARY CARE”.

I enjoy debating and public speaking and accepted the invitation to speak without hesitation. As the day of the debate approached I grew increasingly apprehensive and unsure that I could convince myself, much less anybody else that I believed what I was supposed to say. When my turn came to speak I froze, I could barely speak, my heart pounded, I stumbled over words and phrases and I panicked and prayed for the ground to swallow me up. I’ve had a handful of panic attacks in my life, usually related to getting lost or driving, but this was the most public. It was awful.

And so with this still in mind, I attended the Society for Academic Primay Care Annual Scientific Meeting SAPCASM hoping to be inspired and convinced of the motion I had failed to defend.

The conference began for me with a session about becoming an independent researcher. Working in small groups we thought about how to sell our research ideas to an enlightened philanthropist (Bill Gates). It forced us to think about why our research mattered and why we were the best people to be doing it. An overarching theme was that young researchers are often not good at selling our ideas, much less ourselves and we need to practice this. I left wondering whether it was more about a good act than a good idea.

The first plenary from Frank Sullivan was about whether antivirals should be used in the treatment of Bell’s Palsy. Early in his presentation he told us that even though we have known for years that steroids are effective (NNT=9) they are only prescribed in 50% of eligible cases. If there was a meta-theme to the conference it was this – why are we researching new avenues (like antivirals, which by the way, don’t work) when what we already know to be effective is not yet done routinely? Why isn’t that the major focus of academic primary care?

My poster was up for the first session. I spent the full 25 minutes listening to an enthusiastic delegate and barely had time to talk about it to anyone else. Then I had to take it down. A few hours work and £18 printing costs for what?

In the next session I learned that patients don’t like to criticise their doctors too much. Of course, I didn’t learn that there, because as a GP, this has been obvious for as long as I’ve been in practice, and is obvious to most patients too.  The question, ‘what do we need reliable measures of patient satisfaction for?’ Is a good one and whether you want to help me be a better GP, or turn patients into consumers will probably influence the measures you use. I lamented the lack of politics here.

I was fortunate to see a prize-winning systematic review of GP recruitment strategies from Puja Verma. If only Jeremy Hunt and the RCGP had seen it too. The only thing that works is to change undergraduate education. Keele have got it right, Oxford has got it wrong and there’s not a snowman’s hope in hell that we’re going to get the 5000 extra GPs the government have promised in the time required.

Head of NHS England, Simon Stevens gave the afternoon plenary. He said he wants to make primary care more multi-disciplinary, offer more alternatives to face-to-face consultations and nurture diversity of primary care provision. It was as if he had read my blog for the Centre for Health and the Public Interest. The problem is that I don’t think he realises how efficient GPs are. For almost 40 consecutive face to face consultations I documented who else could have seen my patients. Typically, instead of seeing me (a doctor they knew) they could have seen 2 or 3 other people such as a pharmacist, psychologist, physiotherapist, nurse practitioner or nursing assistant. But instead, in 10-12 minutes I was able to review their medication, listen to how they were coping, take a look at their arthritic hands, inject their thumb and give them an information leaflet. Despite what I wrote in the blog, I think his ideas will mostly lead to higher costs, more fragmentation and loss of continuity. Patients who can manage remote consulting should be enabled to do so, and this might free up time for those who cannot, but we need more GPs! And policy makers should read The Mystery of General Practice to help them understand what we do.

Katherine Yon gave a presentation and Rona Moss-Morris gave a keynote about Medically Unexplained Symptoms, perhaps better described as ‘persistent physical symptoms’. Doctors, educators and medical students are all afraid of what they don’t (and probably cannot) know, and so they tend to avoid it. Only 6 out of 53 medical schools provide training on MUS even though MUS accounts for 18% of GP workload and up to 50% of out patient workload. Most GPs will tell you that an enduring theraputic relationship is vital and most patients will accept that stress can cause physical symptoms, if assured that their symptoms are not imagined. There is evidence that some medical students avoid general practice on the grounds that it is not intellectually challenging enough. Medically unexplained symptoms and the patients who suffer them are as challenging as medicine gets, but it is a human challenge as much as an intellectual one and we might do well to celebrate the human challenges of general practice as one of its greatest attractions.

Christine Cabral gave a presentation about communicating with parents of children with a respiratory tract infection. When I summarised some of the qualitative literature last year, I came to the conclusion that parents wanted confidence, not reassurance. We need to do more to reassure parents that their concern is appropriate and then give them the confidence to cope after the consultation. Carol Sinnot, who presented some wonderful work on multimorbidity suggested I did a study to look at whether giving confidence reduced re-consultation rates. For a while I thought this was a good idea, but on reflection I thought, why not just do it because it’s the right thing to do?

There was a lot about multimorbidity including Bruce Guthrie’s wonderful plenary, ‘Multimorbidity: New paradigm or emperor’s new clothes?’ We learned that the main determinant is deprivation: people in the poorest areas have the equivalent health of people 15 years older in the wealthiest areas and the most debilitating morbidities are depression and chronic pain. This is most of what I deal with as a GP in one of the most deprived parts of Hackney. What do we need? Time and continuity of care in part, but most of all we need political action on the social determinants of health! Why isn’t there more political advocacy from academic primary care? So much downstream research and so little upstream action.

There were a range of papers about patient-centred practice and patient involvement, but as far as I could tell, no actual patient involvement, except for the fact that in one way or another we were all actual or potential patients. It is worth noting that many primary care researchers are not clinicians. But most primary care research is published in pay-walled journals and out of reach of the average (or even above average) patient or non-academic GP. This is a problem. I try on my blog to share research in a way that makes sense for these audiences, but this isn’t academic research and so won’t do anything for an academic career.

One of the best presentations of the conference was from Lesley Wye from Bristol about ‘Evidence based policy making and the art of commissioning’. This ethnographic study looked at how commissioners used evidence when making decisions. Unlike researchers who like to read and write, commissioners are social animals who like to stroll across the office and ask a colleague. Commissioners view ‘evidence’ as hard to find, hard to interpret, hard to apply and too slow. They tend to think that evidence is for healthcare but not commissioning. Researchers need to work with commissioners in the same space. Lesley’s work – undertaken with Chris Salisbury reminded me of the other highlight of the conference, a workshop on co-creation in research from Claire Jackson, Trish Greenhalgh and Judith Smith. Their message was that co-creating research takes place in the swampy lowlands where politics and personalities collide and inevitably requires compromises between research purity and practical utility. This is where I found the inspiration I needed for my debate.

Don’t judge me! Reflections on reflection

Few things seem to irritate doctors and medical students so much as mandatory reflection. Compared to bullying bosses, the lack of sleep and an unstoppable tide of human suffering, the amount of bitterness harboured at being forced to write down ‘reflections’ may seem crazily out of proportion, but I share their frustration. I say this because I am enthusiastic about reflection, but dismayed by the ways it has been handled in medical education and clinical practice.

The assumptions underlying medicine and reflection

To justify any kind of reflection we need to begin with questions like, ‘What is medicine (for)?’ The philosophical foundations of our practice are rarely examined in the formal medical curriculum, but in the hidden curriculum of real-life experience we learn that medicine is a moral practice, guided by science and shaped by culture. It is impossible to escape from the inherent moral ambiguity, scientific uncertainty and cultural conflicts that arise.

These conflicts result in cognitive dissonance – a state of internal inconsistency that some people thrive on, but most are left feeling anxious and uncomfortable, especially when their own values and beliefs are challenged. It may be possible to ignore or suppress the dissonance, but without serious thinking, it can lead to anxiety and burnout or an entrenchment of attitudes, and a lack of critical self and social-awareness.

This brings me to the first problem with mandatory reflection. The dissonance that is frequently the trigger for reflective writing often requires the author to acknowledge their anxiety and reveal their vulnerability. If they are going to do that, then they need to be confident that their writing with be treated seriously and sensitively. In reflective writing problems are identified and explored and though there may be resolution, resolution is not the aim and is rarely the outcome.

Reflection as a supervisory process

Before I help my students with their reflective writing for the first time, conscious that they might be less than enthusiastic, I ask them whether they found it useful before.  They often say that they valued time spent talking  with their tutor about what they had written, but did not appreciate handing in a piece of writing which was returned with little more than a grade and some comments in the margins. I have learned over the years to treat reflective writing as a process of supervision.

I teach second year medical students to supervise one another using a modified Balint approach [1]. They read aloud a 500 word reflective piece they have written about a patient-experience to a small group of fellow students and myself. They say why the experience mattered to them, any thoughts they had while they were reading it out, and any help they would appreciate from the group. While the writing is an example of ‘reflection on action’, that is, a retrospective view of events, thinking about the writing, whilst reading it aloud demonstrates ‘reflection in action’ [2]. While reading, students often notice things they no longer agree with, or ideas that are less clear than they were when they wrote them down. They make clarifications and comment as they go along and after they have finished reading.

I teach the group to listen. They listen for phrases, and think about why a particular phrase was used. The listen for cues – points of significance, and think about what makes them significant and for whom. They listen for contexts that are there and those that are missing, and think about how these change the significance or meaning of what they have heard. Reflective writing is full of attempts to interpret events, so they listen for examples and think about the significance of one interpretation among other possibilities. They listen to find out what role the narrator plays in the narrative – second year medical students rarely play the role of heroic doctor, but more frequently feel like an imposter playing the part of a trusted professional. They listen for the feelings and emotional content of both the writing and the reader. They listen to what needs are being expressed in the writing and reading. They listen to their own response and how that feels. For those that are keen to learn more I suggest some introductory papers on narrative medicine [3–7].

Close listening is a teachable skill and I find it extremely rewarding to join in with their discussions and share in their progress. After doing this for the last two years, I believe now that empathy can be taught, and it starts by learning how to listen [8].

After the work has been read aloud, the narrator sits back and the group discusses what they have listened to without directing their comments to the presenting student or making judgements. To show that they have listened they are encouraged to quote phrases and describe their interpretations. I help the group to identify themes and to think about areas that could be explored in more detail and to think about how they can relate to the work. Students need help to identify potential blind spots, like issues of power [9]. Reflection becomes critical reflection when it includes,

considerations of the creation by social and systemic factors of contexts that implicitly or explicitly influence one’s beliefs and behaviours [10].

After a few minutes the presenting student, who has been listening, is invited back into the group to respond. We all take turns to present our reflective writing, including myself, so that the students can see that I am willing to share my own difficulties and am interested in their responses.

The depth and quality of their conversation often shows a startling maturity and their ability to help one-another to think seriously about their work comes naturally and improves rapidly. After the first session they rewrite their piece, taking into account the discussion and then at a later session, re-present their work to the group in the same way. This gives them the opportunity to learn about trust and continuity. They learn to trust the group (or not) because of the way they handle their reflective writing. Treated sensitively they grow in confidence and their subsequent writing is deeper. Rewriting their work and re-presenting it, reveals the transformative nature of reflection and dialogue and helps them to learn how consultations can transform stories. They learn that reflective practice is an on-going social process rather than a competency or solipsistic introspection.

A reflective culture

The majority of medical students and doctors are naturally self-critical and sensitive to criticism. The aim of reflective practice should be to create a supportive culture in which all professionals are encouraged to think seriously with one-another about what is going on in every-day practice. Without a just culture clinicians will be afraid to talk about important issues for fear of criticism or recrimination [11]. In discussing their study about patient-centred behaviour in medical students, Bombeke et al. concluded that,

Raising students awareness of their personal attitudes might be a better learning goal than teaching ‘better attitudes’ because students may resist attempts to force them to be patient-centred [12].

Nobody, least of all someone who is either overly or insufficiently self-critical, likes to be told that their reflective writing is not good enough. Judgments about reflective writing may be taken as (and may well be) judgments of character, which educators and others make at their peril. Reflective capacity is a core feature of professionalism and students are unhappy with being judged on this too [14,15].

Against assessment

In their paper about Assessment as Practice, Jordan and Putz describe inherent, discursive and formal types of assessment [16]. We make inherent assessments all the time, as I did by recognising the progress my students made with their reflective writing in our sessions together,

Fundamental is the fact that in-a-glance, on-the-fly mutual assessments underlie all of human sociality and, in fact, the solidarity of all social species. They occur routinely, effortlessly, and unavoidably as part of any non-solitary human activity where people rely on a shared sense of purpose. It is how newcomers become full members of communities of practice.

Formal assessments of reflective writing risk transforming a social process into a finished product, but it is obvious to my students that reflection is always open-ended.

In their narrative review of supervision in medical education, Ng et al. ask, rhetorically,

What difference might it make to consider reflection as more than tool or technique? Reflective practice as a way of being transcends traditional assessment; it is an orientation through which one practices, continually challenges one’s own assumptions, and builds new knowledge [10].

Rita Charon [17], in A Sense of Story, or Why Teach Reflective Writing, says,

The duty of the teacher is not to judge and rate but rather to read and tell what is seen.  Reflection fulfills difficult missions of medical education in teamwork, peer learning, trust and care.

In learning to listen, reflect and respond to each other, students learn how to listen empathically and interact not only with one-another, but with patients. It helps students develop not just self-critical faculties, but social and political awareness. They learn a little of what it is like to reveal their vulnerabilities and have someone else respond with skill and empathy.

Charon continues,

We worry that in our commitment to bring reflective writing to our students we might hurry to provide our schools with what we think they want, like quantified markers of individual learner’s achievements. This impulse perhaps distorts and squanders the potential deep dividends of the work of reflective writing. We might remember that it is a profound achievement to equip our students – and ourselves – with the capacity to tell and listen to stories.

We should pay more attention to nurturing reflective practices instead of devising formal assessments of reflective writing. Medicine might be more humane for doing so.

 

 References and further reading

1         Launer J. Moving on from Balint : embracing clinical supervision. Br J Gen Pract 2007;45:182–3.

2         Schön DA. The Reflective Practitioner: How Professionals Think in Action. Basic Books 1983. http://books.google.ca/books/about/The_Reflective_Practitioner.html?id=ceJIWay4-jgC&pgis=1 (accessed 7 Aug2014).

3         Greenhalgh T. What Seems to be the Trouble?: Stories in Illness and Healthcare. Radcliffe Publishing 2006. http://books.google.co.uk/books/about/What_Seems_to_be_the_Trouble.html?id=_GFjwtQgaA0C&pgis=1 (accessed 2 Dec2014).

4         Greenhalgh T, Hurwitz B. Narrative based medicine: Why study narrative? BMJ 1999;318:48–50. doi:10.1136/bmj.318.7175.48

5         Charon R. Narrative Medicine: A Model for Empathy, Reflection, Profession and Trust. JAMA 2001;286:1897. doi:10.1001/jama.286.15.1897

6         DasGupta S. Stories Matter: Narrative, Health and Social Justice. 2012;5:1–4.http://www.conexionpediatrica.org/index.php/conexion/article/viewFile/258/308

7         Launer J. Patient choice and narrative ethics. Postgrad Med J 2014;90:484. doi:10.1136/postgradmedj-2014-132866

8         Afghani B, Besimanto S, Amin A, et al. Medical students’ perspectives on clinical empathy training. Educ Health (Abingdon) 2011;24:544.http://www.educationforhealth.net/article.asp?issn=1357-6283;year=2011;volume=24;issue=1;spage=544;epage=544;aulast=Afghan (accessed 22 Sep2014).

9         Donetto S. Medical students’ views of power in doctor-patient interactions: the value of teacher-learner relationships. Med Educ 2010;44:187–96. doi:10.1111/j.1365-2923.2009.03579.x

10      Ng SL, Kinsella EA, Friesen F, et al. Reclaiming a theoretical orientation to reflection in medical education research: a critical narrative review. Med Educ 2015;49:461–75. doi:10.1111/medu.12680

11      Dekker PS. Just Culture: Balancing Safety and Accountability. Ashgate Publishing, Ltd. 2012. http://books.google.com/books?hl=en&lr=&id=hntr2Ok3Ed0C&pgis=1 (accessed 7 Aug2014).

12      Bombeke K, Symons L, Debaene L, et al. Help, I’m losing patient-centredness! Experiences of medical students and their teachers. Med Educ 2010;44:662–73. doi:10.1111/j.1365-2923.2010.03627.x

13      Birden H, Glass N, Wilson I, et al. Teaching professionalism in medical education: a Best Evidence Medical Education (BEME) systematic review. BEME Guide No. 25. Med Teach 2013;35:e1252–66. doi:10.3109/0142159X.2013.789132

14      Finn G, Garner J, Sawdon M. ‘You’re judged all the time!’ Students’ views on professionalism: a multicentre study. Med Educ 2010;44:814–25. doi:10.1111/j.1365-2923.2010.03743.x

15      Brainard AH, Brislen HC. Viewpoint: learning professionalism: a view from the trenches. Acad Med 2007;82:1010–4. doi:10.1097/01.ACM.0000285343.95826.94

16      JORDAN B, PUTZ P. Assessment as practice: Notes on measures, tests, and targets. Hum Organ;63:346–58.http://cat.inist.fr/?aModele=afficheN&cpsidt=16172270 (accessed 9 Feb2015).

17      Charon R, Hermann MN. A Sense of Story, or Why Teach Reflective Writing? Acad Med 2013;87:5–7. doi:10.1097/ACM.0b013e31823a59c7.A

Relationship-centred care

FBook

The best book I’ve read this year, by a long way, is Forgiveness, Stories for a Vengeful age. In her introductory essay, “As mysterious as love”, Maria Cantacuzino explains why she has chosen not to define forgiveness,

The only thing I know for sure is that the act of forgiving is fluid and active and can change from day to day, hour to hour, depending on how you feel when you wake in the morning or what triggers you encounter during the day.

Following her essay are forty personal narratives about forgiveness written by people who have forgiven, have been forgiven and are struggling with forgiveness. It is a hard read because every story begins with pain and describes a struggle that may or may not be resolved. Forgiveness is a process that helps to relieve the pain of broken relationships, with others and oneself. Forgiveness is both social and intensely personal and the stories that range from childhood abuse to people involved in genocide demonstrate the importance of allowing people to tell their own personal stories of forgiveness.

Like forgiveness, patient-centred care means different things to different people and can change from day to day. It involves suffering, and is a process, which is also a struggle. It means very different things to the parents of a new-born baby on a neonatal ward, an athlete with a broken ankle, the husband of an elderly woman with moderate dementia, and a fifty year old businessman with seven different medical conditions and fourteen daily medications.

Forgiveness can be hard for those who are giving and receiving, for example one story is told by someone who accidentally ran over and killed an elderly woman and was unable to forgive herself. Healthcare professionals who harm patients in the course of their practice sometimes find it very hard to forgive themselves and are known as ‘second victims’. While there is a widespread and growing recognition that patients suffer from a lack of patient-centred care, it is less often recognised that it is deeply frustrating for those of us who want to give patient-centred care, but cannot.  One contributing factor to burnout among health professionals is when we are moved by another’s suffering and recognise what needs be done to help, but are prevented from doing so, usually by time and resources or organisational factors out of our control.

Some of the conflicts felt by doctors and medical students who are unable to provide patient-centred care were revealed in a study by Katrien Bombeke titled, “Help I’m losing paitent-centredness!” In common with other studies showing a loss of empathy through the years of medical education, she showed that medical students found it increasingly hard to sustain the patient-centred practice they aspired to because there was so much more than their patients to attend to as their responsibilities increased.

It is easier to be patient-centred when as a second year medical student based in general practice, you are given an hour with a patient to take a comprehensive history, especially if you are taught to pay attention to narrative, meaning, values and experiences. Many students and patients find this time together mutually therapeutic. There is no pressure to make a diagnosis, formulate a management plan, undertake a medication review, organise a referral, discuss weight loss or smoking cessation or any of the other demands of an average ten-minute GP consultation. By the fourth year of their training, students find themselves attached to a specialist firm, expected in twenty minutes to take a focussed gynaecological or neurological history, examine the patient and formulate a management plan. Time spent exploring their patient’s palpitations, colitis, depression and financial insecurity might mean there is not have enough time to find out the cause of their menstrual bleeding or seizures. Once the patient has presented their story to the student, the student has to represent it as a case to their supervisor,

All case presentations seek to turn an individual physician’s interpretation of the patients subjective and private experience of illness into an objective, scientific – or from another viewpoint, a reliably inter-subjective and medically recognizable – account of disease. Tierney

There are inescapable conflicts between the need to take a focussed history and make an accurate diagnosis in a timely manner in a busy clinic and the need to be more patient or person-centred. We have to be at the same time objectively diagnostic and subjectively therapeutic, often combining both in a single consultation, for example, when faced with a patient presenting with new symptoms on the background of complex, chronic multi-morbidity.

It is interesting that (in general but not exclusively) the patients represented in the policy oriented literature usually have a number of established conditions. These patients are used to demonstrate the need for better coordination of services. The healthcare professional literature features more patients with greater uncertainty and is used to demonstrate the need for better communication and shared-decision making. Both organisational and relational aspects of patient-centred care matter to patients. Kieran Sweeny, in describing his experience of being diagnosed with cancer highlights this clearly,

Medicine is not solely a technical activity and pursuit, medicine is about understanding and being with people at the edge of the human predicament. Caring for somebody is a transactional activity, where they do things to me. Everything I’ve had done to me has been excellent; there hasn’t been a single mistake, I’ve been seen on time, transactionally the place has been outstanding. It’s the relational care where I think the experience has been less than satisfactory.

It is clear from clinical practice that doctors need to be both diagnostic and therapeutic at the same time. A urinary tract infection might be easy to diagnose, but patient-centred care requires doctors to recognise and respond appropriately to their patients’ concerns, ‘Could it be something I caught from my boyfriend? Could I give it to my daughter? Is it because of something I’ve done? Will it damage my kidneys? Could it make me incontinent or harm my baby?’ ‘Do I really need to take antibiotics?’ Recognising that concerns like this even exist requires that we establish a relationship of trust so that our patients can ask the kinds of questions they are afraid to ask because they might feel embarrassed or guilty. The potentially confessional nature of even the simplest consultation demonstrates doctors’ pastoral power in which we bear witness to what may be guilty secrets. Handled respectfully and skilfully this can transform a simple consultation into something genuinely empowering for patients and satisfying for doctors.

Patient-centred education

It is easier to be patient-centred when you are trained that way. I wasn’t. Patient-centred care was not a phrase I heard at medical-school in the 1990s and I suspect that the majority of medical professionals have had no specific training in patient-centred care. In medical education in the UK basic attempts are made in communication-skills training. Bombeke found that medical students were able to draw on their communication skills training, but it did not translate well between medical education and clinical contexts. In the post-graduate GP curriculum, communication skills may be treated by strategically minded students as hoops to jump through or tricks to perform to get through an exam, rather than a core value that underpins their practice. They conflict with other necessities, like diagnostic-skills, time-keeping and the demands of guidelines, targets and incentives. Patient-centred care may be reduced to rote questions, “what are the patient’s ideas, concerns and expectations?” and ‘shared decision making’ becomes a matter of telling the patient everything we know, and asking them what they want to do. After a while, so many so many patients reply, “I don’t know, what do you think?” that we sink back into a benevolent paternalism. The benevolence shouldn’t be underestimated. In my experience, the vast majority of doctors who have little idea about patient-centred care lack neither kindness nor competence. Patient-centred skills of narrative humility, epistemic justice, values based care and shared decision-making can be taught, but they take time, patience and expertise. Atul Gawande’s four questions are a simple and useful start; What do you understand? What matters most to you? What are you most afraid of? And what compromises or risks are you willing to take? Time required to teach sophisticated communication skills is contested by many who think time would be better spent on teaching statistics or anatomy.

Patient, person or relationship-centred care?

Good health depends on us having healthy relationships in three areas; with people (including carers, family, colleagues etc.), materials (including the built environment and the ‘stuff’ around us) and organisations (including systems, pathways, lines of communication etc.) The importance of healthy relationships has been highlighted by a recent report from Relate, a short book called Humanising Healthcare and longer book called Intelligent Kindness, Reforming the Culture of Healthcare. What they share with a growing literature on empathy and compassion in healthcare is the understanding that the way we treat patients is a reflection of the way we, ourselves are treated. In Bomeke’s study, she discovered that medical students who sustained patient-centredness were those who experienced student-centred relationships with supervisors who spent long enough with them to get to know them.

The politics of patient centred care

There is a simplistic, politically useful conception of power as something akin to a football that can be passed between patients, professionals and organisations. According to this view, professionals and organisations refuse to share power with patients because of vested interests. The policy implications that follow from this are that professionals and public healthcare institutions need to be disempowered. One problem with this view is that by any measure the NHS is not centred on the needs of professionals. A lack of time even to attend to basic bodily functions combined with a culture of bullying and fear, rising levels of staff sickness with stress and mental illness, all point to an organisation that is anything but centred on the needs of its staff. If there is any validity in the conception of power as a football on which attention is centred, it is that a great deal of damage is done fighting for possession.

A more sophisticated and realistic conception of power is,

as a productive network which runs through the whole social body, much more than as a negative instance whose function is repression. Foucault: Power/Knowledge: Selected Interviews & Other Writings 1972-1977

There is no avoiding the power differential between someone rendered vulnerable by illness and a healthcare professional who is there to provide care and support. Those who would use patient-centred care as a political tool to undermine professionals are often driven by their own vested interests.

In a carefully argued paper from 1995, retired GP Dr Julian Tudor Hart explains that,

Optimally efficient health production depends on a general shift of patients from their traditional role as passive or adversarial consumers, to become producers of health jointly with their health professionals, in an essentially co-operative rather than competitive public service.

Patient-centred care and continuity

It is easier to be patient-centred when I know my patients. Continuity of care enables me to learn about my patients’ lives and gives my patients time to discover how I think, what I care about and what I know. For patients with long-term conditions, especially with a troubled history, it is upsetting to have to tell their story to a never ending series of strangers. Continuity of care allows trust to develop. Max has been my patient for the best part of a decade. I know his wife and children and I looked after his father during his final illness and his wife during her pregnancies. After about two years of careful negotiating he decided to have his kids vaccinated. Caring for patients as ‘persons’ – people with a history and a social network, takes time over which relationships can develop. It is possible to do a lot more in the NHS to facilitate continuity of care, but factors like shorter, more intense shift work, militate against this.

Patient-centred care and incentives

The vast majority of NHS staff are salaried employees, including now, the majority of GPs. We cannot subvert medical care for our own financial gain by over-treating the wealthy and excluding the impoverished as often happens when healthcare is a business. This is one reason why so many of us are anxious about the direction of reforms that are encouraging patient consumerism and profession entrepreneurialism. Nevertheless the financial security of the institutions on which both we and our patients depend is tied to incentives that are not patient-centred. Dr Margaret McCartney has tirelessly campaigned for an end to work being forced upon us that is of no proven benefit to patients. This includes health-checks, dementia screening, advance care plans, most QoF, referral management schemes and CQC inspections. Many doctors and nurses find the demands of the electronic patient record an unwelcome distraction. National Voices a UK patient involvement charity, suggest that,

Although professionals and commissioners are increasingly discussing how to be ‘person centred’, service delivery remains dominated by regulatory, financial and organisational priorities – which regularly trump other considerations. This often results in staff doing the right things “despite the system”

International patient safety expert, Don Berwick was commissioned by the UK government to write a report after Mid Staffs and concluded that we should,

‘Abandon blame as a tool, NHS staff are not to blame – in the vast majority of cases it is the systems, procedures, conditions, environment and circumstances they face that lead to patient safety problems.’

Conclusions

The vast majority of healthcare professionals long to be rewarded for finding out what matters to their patients and helping them. If what patients need lies outside their professional expertise, they want the people and the organisations around them to be competent, efficient and patient-centred and they share their patients’ frustrations when they are not. In these very stressful times, patients and professionals are in great danger of blaming each other for being indifferent to each-others’ needs. I believe that what patients and professionals want, and need is surprisingly similar. It is possible for NHS care to be much more patient-centred if we pay much closer attention to what we have in common and work on the healthy relationships and therapeutic partnerships that are good for us all.

Supervision for all

Clinical supervision: The key to patient safety, quality care and professional resilience. BMC Medical Education

“The performance of the NHS is only as good as the support we give to the staff”

So said the Secretary of State for Health, Jeremy Hunt at a conference at the King’s Fund this week. In doing so he echoed the conclusions of Professor Don Berwick who was asked to review the findings of the Francis report into failures of NHS care in 2013. He concluded, The most powerful foundation for advancing patient safety in the NHS lies much more in its potential to be a learning organisation, than in the top down mechanistic imposition of rules, incentives and regulations.

Missing from these political statements and grand reports are suggestions about how to make the NHS a more supportive, learning organisation. Clinical supervision has been long established as the way that healthcare professionals provide education and support in their working environment and has patient-safety and the quality of patient care as its primary purposes. Whilst clinical supervision is mandatory for trainees, it not routine for those of us who have completed our training and we may spend the majority of our working lives unsupervised. Consequently we become isolated, uncomfortable with having our work scrutinised, and out of the habit of reflecting on our practice with others.

Clinical supervision has many different forms though its functions always include education and support. The flexibility of its forms means that it can be adapted to suit the needs and resources of different groups, small or large, specialist or interdisciplinary. In recent weeks I have attended large group clinical supervision in the form of Schwartz rounds, where senior clinicians presenting have modelled clinical uncertainty, ethical difficulty and emotional engagement with their work that prompted a young nurse to respond, I used to think it was only the most junior members of staff that felt like this.

Narrative-based supervision is particularly suited to the needs of professionals whose challenges have less to do with technical knowledge than relationships with colleagues, administrators, managers, patients and relatives. It facilitates teamwork, open discourse and reflective practices on which a just culture and patient safety depend. It relies on the quality of the questioning rather than expert-knowledge, so that junior staff-members can supervise their seniors, nurses can supervise doctors and hierarchies can be flattened. Its emphasis on identifying and exploring problems reveals medicine’s underlying moral conflicts and helps create habits of ethical thinking on which safe, compassionate care depends.

Professional isolation, stress and burnout are widespread and worsening across many healthcare systems.  Regular clinical supervision ensures that health professionals connect with their peers in safe, serious and supportive ways. It has been shown to reduce burnout and compassion fatigue in GPs and improve engagement in hospital doctors and help nurses connect emotionally with their patients.

Stopping us from providing clinical supervision for all professionals are problems of acceptance and access. Some professionals think that they have no need once they have completed their training. They see supervision as a slight on their independence, in spite of the increasingly team-based nature of modern healthcare. Others find that their previous experiences of supervision have not been all that supportive, and prefer other ways of achieving similar goals. Individuals and organisations my not value supervision enough to protect time required for it to take place. Access depends on a culture that embeds supervisory skills throughout the healthcare professions. This is not that difficult. I teach second year medical students to supervise one another using a modified Balint approach. They read aloud a 500 word reflective piece they have written about a patient experience to a small group including myself. The say why this experience mattered to them, any thoughts they had while they were reading it out, and any help they would appreciate from the group. They then sit back and the group discusses the issues raised without directing their comments to the presenting student or making judgements. After a few minutes the presenting student, who has been listening, is invited back into the group to respond. We all take turns to present, including myself, so that the students can see that I am willing to share my own difficulties and am interested in their responses. The depth and quality of their conversation often shows a startling maturity and their ability to help one-another to think seriously about their work comes naturally and improves rapidly. In only a couple of sessions they are able to facilitate themselves.

I hope my paper for this special BMC collection, which brings together theory and evidence in support of clinical supervision, will help create a culture where regular clinical supervision is normal practice for all health professionals. I have little doubt that patient safety, quality care and professional resilience depend on it.

General practice adaptation

In 2001 Richard Smith, then editor of the British Medical Journal (BMJ) wrote an editorial titled, Why are doctors so unhappy?  and found the source of their unhappiness in a bogus contract in which medicine promised too much and delivered too little to the mutual disappointment of doctors and patients.

In 2013 John Launer responded in an essay titled, Doctors as Victims in which he called for doctors to reflect on how powerless they felt despite being in possession of far more power than their patients.

Returning to the theme, and linking these two pieces together, Smith has responded with a much less sympathetic blog for the BMJ this week,

General practitioners have replaced farmers as the profession that complains the most.

I have no sympathy for them. I want them to stop being victims and become leaders, people who solve problems rather than complain about them and expect others to solve them. I’ve preached this message to meetings of GPs several times in the past, which has not made me popular, but the current orgy of moaning has urged me to put finger to iPad.

When I was editor of The BMJ I seemed always to be reading studies of stress in doctors. Why, I wondered, were there so many studies of stress among doctors but few among single mothers, the unemployed, schoolteachers in rough areas, aid workers, rickshaw drivers, asylum seekers, or the billions living on less than $1.25 a day?

Seeing yourself as a victim, he says, is unedifying when others are so much worse off than you are.

Smith never practiced clinical medicine. Disturbed as a medical student by the realisation that medicine can do serious harm as well as good, he avoided having to personally take responsibility for others lives. He doesn’t know, as I do, what it feels like to kill someone when you were trying to save them. As an aid-worker in Afghanistan in 2004 I was evacuated after several of my friends and colleagues were shot dead. I’ve always worked in rough areas and every day I listen to the stories of asylum seekers, victims of torture and domestic violence. Despite my happy childhood and financial security, I have a pretty good idea what stress feels like. Faced with a depressed patient, the last thing you do is tell them that they’ve got little to be depressed about because you’ve just seen someone whose situation is far worse who is coping much better. One thing most depressed people suffer from is the guilty feeling that they don’t deserve another’s sympathy because they don’t have enough to be depressed about.

Faced with a patient (or a profession) that is in distress, the first thing to do is acknowledge and explore their emotions, and your own. GPs are feeling depressed, anxious, angry, exhausted, confused, despondent, miserable, hopeless, powerless even. Smith is feeling frustrated, impatient, angry even. The next step is to try to understand the emotions. Acknowledging and understanding  feelings are the affective and cognitive aspects of empathy. The next, compassionate step is to try to identify needs. According to the recent BMA survey, the majority of GPs want to spend more time with their patients, less paperwork and better continuity of care. Recent articles in the Journal of the American Medical Association and BMJ Quality and Safety have argued for the importance of finding joy in medical practice through professional autonomy, meaning and respect. Penny Campling has clearly articulated the need for professionals to work in a culture of ‘intelligent kindness’ if their work with patients is to be also kind and caring. I guess Smith wants medicine to be more humble with regards to its science and more radical in its politics. He wants doctors to be more like him.

Demanding solutions without exploring feelings and needs is a form of violence, according to Marshall Rosenberg, who has pioneered ‘non-violent communication’. People with feelings and needs need to be heard without criticism or demands. Smith’s conclusion,

a moratorium on moaning and a festival of ideas for reinventing general practice.

will not be taken up by a profession whose distress is dismissed.

Having said all that, I have spent some time thinking about what might enable GPs to find more joy in our work. The following is a sketch of some of the things that we could consider if we are to thrive in future. It is not a prescription to be swallowed hole, but a menu of suggestions, there should almost certainly be more options and some that are unpalatable. But it is my response to Richard Smith’s challenge, and I hope some of it will help.

General Practice adaption

GPC Chairman, Chaand Nagpaul’s 2015 LMC conference speech received a long, standing ovation from the assembled GPs last month as he described ‘the triple whammy of morale, workload and workforce pressures’ and quoted the Health Education England Taskforce review  describing a ‘GP crisis’ because present numbers of GPs are unable to meet current demand. Numbers of GPs per head of population are set to decline with up to 10 000 planning to retire in the next five years, many training places unfilled, and one in five trainees planning to emigrate.

General practice clearly needs mitigation to attract more doctors to the profession and the case for this is clearly stated by Dr Nagpaul  but it also needs adaption to cope with a future in which there are significantly less GPs per head of population than there have been before.

The following are suggestions about how General Practice can adapt. There is almost certainly a bias towards urban General Practice, because that is where I have worked, and these are suggestions, not a prescription. But there is no doubt that we will need to change, wherever we work.

Rethinking the gatekeeper role.

The GP gatekeeper role should be reserved for situations of medical diagnostic uncertainty and clinical management support. In most other cases and especially when patients want self-management support, they ought to be able to refer themselves to a specialist. In many instances patients can already self-refer to the services listed below, but this is not the case everywhere and I have referred patients to all the listed services in recent years. I would suggest that patients should be able to refer themselves directly to these services without having to make their case to a GP. The services would have to adapt by having their own effective triage system so that patients are supported on a spectrum from advice to specialist intervention as appropriate. Patient education and self-management support should be part of every service at every level.

  • Abortion
  • Alcohol services
  • Ante-natal care
  • Audiology including paediatric
  • Dietician
  • District nursing
  • Exercise/ gym
  • Falls team
  • Family planning (contraception)
  • Family support services
  • Health trainers (see below)
  • Health visitors
  • Occupational therapy
  • Palliative care
  • Physiotherapy
  • Podiatry/ foot health
  • Psychology/ counselling/ bereavement counselling
  • Rehabilitation (after major illness, e.g. heart attack/ stroke etc.)
  • Sexual health
  • Smoking cessation
  • Social prescribing
  • Social services
  • Speech and language therapy (paediatric and adult)
  • Specialist nursing, e.g. asthma, copd, dementia, diabetes, epilepsy, heart-failure, stroke, wound care etc.
  • Substance misuse

Patients should also be able to refer themselves back to hospital after a missed or cancelled appointment. A considerable and infuriating amount of time is spent re-referring patients back to hospital with the same problem.

Triage

When a patient presents with a problem, for example stomach ache, they may not know whether they need to see a GP, a nurse, a pharmacist, a gastroenterologist, a general, urological, gynaecological or vascular surgeon, a hepatic or renal physician or whatever. An expert generalist at the point of first contact can minimise the steps required to solve the problem. This is why many practices are choosing to phone patients before they book appointments so that if possible they can deal with their concerns immediately and where not, they can make arrangements for their patients to be seen. At present, this system still relies on receptionists taking the initial call, and making a basic triage decision: can they wait for the GP to call them back, or do they sound so sick that the GP should be immediately informed? Furthermore, with this system, GPs might find themselves spending a lot of time signposting patients to services or giving simple advice, a role that health-trainers (or similar) could do very well. If the first point of call was to a clinically trained receptionist, such as a health-trainer who had immediate access to GPs in case of concern, then GPs could spend more time with patients who need them.  Where possible, every point of contact should have some clinical training so that, for example instead of making an appointment for a blood pressure check, everyone who works in a GP surgery can check a patient’s blood pressure and teach them how to do it themselves next time.

The GP team.

The traditional GP team has expanded over the years from a GP and a receptionist/ manager to include practice nurses, nurse practitioners, health-care assistants and more. Not long ago health-visitors and district nurses were based in GP practices and many GPs wish the close working relationships could be re-established. The advantages are better continuity of care and clearer lines of communication. The extent of the team will vary according to the size and needs of the practice, but larger (>10k patients) practices could include:

  • Auditors, at practice and CCG level to regularly audit practice, guided by GPs to choose the areas to be audited, but not to waste time on the audit process itself.
  • District nurse
  • Health trainers/ community health workers to support self-management of chronic diseases, including hypertension, diabetes, asthma, COPD and lifestyle change including: weight loss, smoking cessation, exercise, alcohol reduction etc. They could also proactively follow up vulnerable patients who are not good at attending appointments and visit housebound patients. Here is a good guide to Brazil’s Family Health Strategy and use of Community Health Workers (Agents). One of their most important roles is to pro-actively engage people who are in need of care but do not choose to go to their GP.
  • Health visitor
  • Legal and financial advice
  • Pharmacists to support medication reviews, polypharmacy rationalisation, prescribing audits, repeat prescription requests, changes in prescribing guidelines. Excellent blog by Ravi Sharma, a GP based-pharmacist explaining his roles
  • Physiotherapist
  • Psychologist/ counsellor
  • Social worker

GPs should not be spending time on human-resource management (HR), occupational health, and finance-management. A lot of this work could be carried out at scale for federations of practices with patient-populations of >100 000

IT

Patients should have online access to their medical record. This can improve the accuracy of the record and will enable patients to show it to every health-professional they meet and keep it safely updated. This is not without risks; consider for example an adult that discovers that they were once subject to a child-protection order, or a woman in an abusive relationship whose partner forces her to disclose her record. Risks need to be mitigated and shared between GPs, NHSEngland and patients.

Social media.

Secure online platforms for patients and professionals should be set up so that expertise can be shared. Self-care protocols could be set up and time-tabled specialist presence so that patients and professionals know when to look for answers with effective moderating and curating so they know where to look.

Community specialist teams.

We need teams in areas of high need such as nursing homes / homeless / mental health with the commissioner working with providers and third sector organisations to design contracts that stimulate innovation. Nursing homes are in a parlous state with providers squeezed desperately as a result of government cuts to local authority funding. When nursing home care fails, patients end up in hospital. Joint health and social care budgets might force commissioners to fund care where it is most cost-effective, which is almost certainly in nursing homes with expert-medical support. GPs, working in teams with geriatricians, psychiatrists and specialist nurses are in an ideal position to work here. But many hospitals are carrying enormous debts from the reduction in payments by tariffs and PFI costs and cannot cope with any further loss of funding.

Team working.

One of the greatest dangers in general practice is professional isolation. Older GPs remember a time when they would have weekly meetings at the local hospital and knew many of the consultants personally. The intensity of their workload now means that many GPs are isolated not only from their hospital colleagues, but also one-another. It is vital that time is made and protected at least weekly, both online (as suggested above) and face to face for GPs to discuss the patients that they and their colleagues are concerned about. Almost all the changes above increase the size of the teams within which GPs work and effective teams need good lines of communication.

Relationship-based care.

For almost all patients, and especially those at the end of life and those with serious, chronic illnesses, complex multi-morbidities and enduring mental health problems, continuity of relationship is essential. Although most patients will be cared for by teams, continuity within teams should be a priority and every patient should have their own named, responsible GP. Health care is a moral practice that involves people treating people, and yet we are in danger of treating medicine as if it were science treating disease by protocol. If we let it go that way even more than we already have, then we will dehumanise our patients and ourselves, to say nothing of recklessly ignoring the complexity of human lives and human suffering.

Estate change.

Chaand Nagpaul quoted the LMC survey showing that 40% of GP premises are inadequate to provide essential care and 70% do not have space to expand. NHS England has secured a £1bn infrastructure fund which will benefit 1000 English practices this year. We need fewer, bigger GP practices providing more services with space for specialists to work in the community where they can train and leave legacy. BMJ podcast on buildings for health: GP practices  should be community centres.

Patient-centred care requires buildings that are easy to access and navigate, promote care and recovery for patients and good health for everyone in them. They are not only places for work, but must also provide peace, natural light, healthy food and time and space for everyone in them to meet, learn, reflect and rest.

GP training.

This should be a ‘better fit’ for the needs of the future GP (RCGP 2020) with a greater emphasis on elderly care, palliative care, multi-morbidity etc. There should be much more attention to patient-centred care, in particular shared-decision making and self-management support. Training should reflect the shift from a GP as an independent practitioner to a multi-disciplinary team player.

Out of hours and 7 day a week general practice.

There are not (and will likely never be) enough GPs to keep every surgery open 8-8 , seven days a week operating as the presently do. However in places like Hackney that have taken back responsibility for out of hours care with a locally run GP co-op, the quality of out of hours care and patient satisfaction levels are very high. The infrastructure: phone-lines, receptionists and clinicians is already in place, and with a little more investment could be set up to offer patients appointments with GPs and other members of the primary care team, at weekends.

Less is more.

Finally, there is a global coalition of medical professionals, journalists and patients who have realised that a great deal of modern medicine is not effective and that cutting down on waste requires that patients and professionals are given the right information and enough time to make the right decisions about care. We could start be stopping unsolicited health-checks and dementia screening as well investigations like MRI scans for the vast majority of patients with back pain and headaches.

BMJ Too Much Medicine

http://www.lessismoremedicine.com/

Innovation, evaluation and emulation.

General Practice is a hot-bed of innovation, but innovation is incredibly patchy, poorly evaluated and rarely emulated. The Royal College of GPs should support innovation, evaluation and emulation so that good practice is backed up by good evidence and shared so that patients and GPs everywhere can benefit.

Further reading:

RCGP Blueprint for general practice May 2015 http://offlinehbpl.hbpl.co.uk/NewsAttachments/PGH/Blueprint.pdf

Caregiving

I heard a voice coming from an answer-phone but I couldn’t make out the words. I recognised the tones of concern and it was obvious they weren’t just leaving a message. Not entirely sure where my parents kept their phone I followed the sounds until I heard, “Hello?! Is anyone there? Mr Tomlinson, are you all right? Can you hear me?”

I picked up the receiver, “Hello, it’s Jonathon, Mr Tomlinson’s son, how can I help?” “Mr Tomlinson has pressed his emergency call button.” My dad was upstairs and I was downstairs but we were close enough to hear one-another. I guessed he had pressed it by mistake.

My immediate reaction was to feel embarrassed and apologise and immediately reassure them that he was OK and apologise again for wasting their time. All without checking on my dad. One thing carers are afraid of is being a burden on others or wasting anyone’s time.

I hung up and ran upstairs. He was in the bathrooms on his hands and knees, groaning with a mixture of pain and shame. “Are you OK?” I asked. “No, not really.” He struggled to get the words out. A series of strokes has combined with Alzheimer’s dementia to undermine his ability to find the right words and join them together in the right order. He was in a mess. A huge nappy, full of watery diarrhoea was tangled around his ankles, the diarrhoea was smeared all over his legs and hands, the bathroom floor, the toilet, everywhere. My mum – 70 years old, his full-time carer, called from downstairs, “Are you OK up there? Do you need any help?”

“We’re fine thanks” I called back, “Just give us a few minutes.” I knew this kind of thing happened to my dad quite frequently, but it was the first time I’d been in this position, the first time I’d seen him like this. I looked around for wipes and gloves. I found some wipes on the window sill but no gloves. The wipes had dried out in the unseasonably warm early spring sun, so I had to wet them under the tap. For about 15 minutes, carefully, gently, firmly, thoroughly I washed him, starting with hands and feet, working my way gradually towards his bottom. To my surprise neither of us seemed embarrassed. I’d seen him in tears before, sobbing and saying sorry for being useless and for being too much trouble when he couldn’t help with household tasks. I think I was more afraid of that, an emotional outburst, than the mess and the foul smell. I was expecting him to be beside himself, tearfully and shamefully apologetic, but he was almost cheerful. This helped enormously. He stood up and hung onto the sink as I washed between his thighs and buttocks. “Thank you … very … much”, he managed to say with a bit of a struggle. “It’s fine”, I replied, “no problem. You’ve cleaned my bum many more times than I’ve cleaned yours!” We laughed together, “Oh yes!” he agreed, smiling.

This was not how I had thought it would be. I was expecting  us both to feel upset, ashamed, angry perhaps and disgusted. As a 17 year old working on an elderly care ward at Winchester hospital, a demented man had got really upset when I was washing him and started fighting and I had been frightened and upset. The memory has stuck with me. But this time, with my dad, we discovered affection and humour bound together by intimacy. It was the closest we had been, not just physically but emotionally, for a long time. I steadied him out of the bathroom into his bedroom and helped him dress, washing his hands once more, last of all. Then I went back and cleaned the bathroom. Then we went downstairs together. This act of intimacy made me realise, once again that a medical education and nearly 20 years of medical practice has taught me almost nothing about care-giving. Having worked as a care-assistant on an elderly care ward in my holidays when I was a medical student, I wasn’t entirely naive, but I was sad to discover that 20% of carers say that their GP practice is not carer friendly. I’m not even sure you can teach someone about giving care, you have to learn about caregiving by doing it, and you do it because you have no choice. Caring is a moral and practical obligation. For me though, in many ways it was easy, it was just the once. I am not my dad’s carer, I was just visiting for the weekend. My mum is my dad’s full-time carer. About once a month she pays a carer to cover while she has a break or my sister comes and helps. Caring full-time is far more physically, practically and emotionally complex than my single encounter. Psychiatrist Arthur Kleinman, who cares for his wife with Alzheimer’s explains,

I am not a naive moralist. I’ve had far too much experience of the demands, tensions, and downright failures of caregiving to fall into sentimentality and utopianism. Caregiving is not easy. It consumes time, energy, and financial resources. It sucks out strength and determination. It turns simple ideas of efficacy and hope into big question marks. It can amplify anguish and desperation. It can divide the self. It can bring out family conflicts. It can separate out those who care from those who can’t or won’t handle it. It is very difficult. It is also far more complex, uncertain, and unbounded than professional medical and nursing models suggest. I know about the moral core of caregiving not nearly so much from my professional life as a psychiatrist and medical anthropologist, nor principally from the research literature and my own studies, but primarily because of my new life of practice as the primary caregiver for Joan Kleinman.

At the same time that the number and proportion of elderly people is rising and people with disabling chronic diseases are living longer, our government is cutting social care and underfunding the NHS. And so the burden of care is falling, and will continue to fall, on families, neighbours and informal networks of unpaid volunteers. David Cameron’s rhetorical ‘hard-working families’ will have to give up their jobs to care for their families. Their ‘hard work’ will be providing unpaid, personal care for their families, providing the social care that a low-tax economy cannot provide. Sooner or later, most of us will be carergivers or cared-for.

This is a good time to think about Carer’s week and the kind of society we want.

Further reading:

“Unendurable” cuts threatening vital home care Adult social services press release

Crisis? What Crisis? Roy Lilley blog about Saga withdrawing from nursing homes

Arthur Kleinman on Caregiving

What are we afraid of? Growing old without social care.

Listening and Learning from people with dementia and their carers.

A Perfect Storm. The impact of welfare on healthcare

Giving and receiving

Several years ago, I was packing my panniers with presents that patients had given me for Christmas. I felt embarrassed by their generosity. My patients then, as now, were for the most part pretty impoverished, and yet some had gone to considerable trouble to buy me gifts and wrap them carefully. Troubled by this I spoke to one of the other GPs who had been there for several years.

“I think of it like this”, he said. “First of all, sometimes of course a gift is just a gift, a straightforward expression of gratitude. But don’t forget too, you’re in a powerful position: all day long people who need help come to you and you do whatever you can for them. They give you their stories and share their pain, their worries, and their misery and then apologise to you for being a burden, and they mean it. No matter what you say, a lot of patients feel guilty for giving you nothing but grief all year and this is an opportunity for them to give you something different for a change. If you refuse, then you’re basically saying to them that you’re the one who dishes out the sweets and they’ve only got sour grapes and that’s the only way it can be. Accept the presents graciously, it means a lot to them and it should mean a lot to you too. Your patients care about you, and caring for others is one of the things that makes a hard life a bit more bearable. For some of course, you’ll have gone the extra-mile or diagnosed them with something really important, and for others there’s precious little kindness in their lives and you’ve been a part of that. For you perhaps it’s just business as usual, but look at it from their perspective, it’s anything but business as usual, it’s incredibly important, and giving you a present is their way of letting you know that.”

“I can’t help but feel uncomfortable though …” I started.

“Well that’s hardly a surprise,” he continued, “If you read the medical journals or the tabloids, you’ll be bound to think that presents are incendiary devices that you should treat with extreme caution because they’re loaded with the assumption that patients cannot be trusted and your moral integrity can be bought. And for what? A box of Turkish delight? It’s interesting and more than a little depressing to see the misanthropic fog of mistrust that hangs over us.”

“But I’ll grant you, It can be difficult for some of us to accept presents, I used to feel like that myself. It starts off with feeling inadequate, ‘what did I do to deserve this? I’m only doing my job!’ We propagate the idea not only that we’re not deserving, but that we don’t need affection, as if that’s a weakness that afflicts patients, but doctors are immune. We’re even uncomfortable using our humanity. It’s a sad fact that modern medicine instils in us the idea that it’s OK to treat patients with dangerous drugs, but somehow unprofessional to treat them with kindness, empathy and compassion. If these things leak into our practice, then we’re almost apologetic. As if that’s what homeopaths do, but not ‘real doctors'”.

“I suspect you’re the kind of person who feels uncomfortable with praise.” I nodded, “That’s because we think that people should only get what they deserve and we don’t deserve our patients’ kindness. Patients don’t deserve colitis or cancer, epilepsy or infertility either, though goodness knows they often think they do, and sometimes we even feed into that. And I’ll bet that if you try to reassure them and tell them that they’re wrong, that it’s not their fault, nine times out of ten they don’t believe you.” I nodded again, “That’s because we’re bought up in a culture in which just deserts are what you get for doing something bad, but being good is just how we ought to be, so it’s not deserving of attention. And the healthcare professions have made kindness a professional competency instead of celebrating it as something wonderful, which we should do, because it is.”

“Kindness is a choice we make. When we choose to listen and attempt to understand what our patients are feeling and what they need, then we’re choosing to be empathic. We demean this by saying that it should just come naturally when in fact it’s bloody hard work, especially when you’re at the end of another twelve hour day and in receipt of so little kindness or empathy yourself.”

“So think about what these presents mean to your patients and what they mean to you, be kind to yourself and be grateful.”

Wonderful lecture/ workshop on Non Violent Communication that inspired this blog

General Practice after the election

General Practice after the election. (First published on the LMC Newsletter)

In 2008, Professor Don Berwick wrote in the British Medical Journal,

Reinvest in general practice and primary care—These, not hospital care, are the soul of a proper, community oriented, health preserving care system. General practice is the jewel in the crown of the NHS. Save it. Build it.

His advice was ignored. The NHS has an unprecedented funding-gap of this governement’s own making and it has no credible plan to fill it. General Practice is in a parlous state: one in three GPs are planning to retire in the next five years, one in three training posts and one in six vacancies unfilled. Older GPs are retiring early and one in five younger ones are emigrating and many more are choosing to work part-time. The loss of MPIG could force dozens of practices to close. The consequence is that the remaining GPs cannot cope. Something has to give.

What GPs want, according to the recent BMA survey is more time with patients, with 80% ranking continuity of care as essential. They said they needed more core funding, longer consultation times and a reduction in bureaucracy. GPs are attempting to practice relationship-based, patient-centred care in an increasingly performance and guideline-centred NHS. This is in the interests of neither GPs nor patients.

In 1992, Julian Tudor Hart asked rhetorically,can contexts for clinical decision-making be structured so that doctors’ interests coincide with those of patients individually and society collectively?  He knew that the solution would “require revolutionary changes in the way care is conceived, organised and resourced.”

GPs are still reeling from the last revolutionary re-disorganisation that was the 2012 NHS Act and there is very little appetite for radical change. Having said that, British General Practice has been, in large part because of its independent contractor status, favoured by 82% of BMA respondents, incredibly innovative and new models of federating and networking are actively growing. The vast majority of GPs, despite their political differences, are deeply committed to their patients and still find great satisfaction in spending time with their patients. Our future resilience depends on the quality of this time.

It is very unlikely that there will be enough GPs to continue working the way we are. We could work a lot more efficiently by being better prepared for the patients we see, either by speaking to them on the phone or by employing community health workers/ health trainers/ physician assistants. Patients who need help with housing, benefits, hospital appointments, lifestyle changes, minor illnesses, a blood test, blood pressure check or other weights and measures could get help with all these things without having to make their case to a GP. There was a pilot project in Wales for community health workers, physician assistants are being trialed and Turntable health makes good use of them. But it is not yet clear how they can best work with primary care teams, whether they represent good value for money or whether sufficient numbers could be trained. Experimentation needs to be combined with evaluation.

What then do we want from the new government?

  1. Trust and support. As Don Berwick said in his report on Mid Staffs, “[the government] should foster whole-heartedly the growth and development of all staff, including their ability and support to improve the processes in which they work”. Money presently wasted on inspection and regulation should be spent on education, research and support.
  2. Outcomes that matter. In her essay, Arm in Arm with Righteousness, Iona Heath warns that “we risk destroying quality in healthcare in our attempts to measure it”. We should stop measuring things that don’t matter and start measuring those that do.
  3. Fair funding. For one thing, funding should reflect workload. For another, “Despite being an oft-repeated command to dying institutions, the ability to do more with less is an inherent impossibility”. The government’s pledge of 8am to 8pm seven day a week GP access is an inherent impossibility.

There is nothing the government can do to increase the numbers of GPs, but it can help to make general practice a more attractive career. Then the new GPs will come.

Power in the consultation

I called in my next patient, Jane and she sat down in front of me and we shook hands. Instead of letting go, our hands slipped back a little and our fingers interlocked, our thumbs raised …

“I’d like a referral to see a specialist”

She came out straight with it before I’d had a chance to ask her how she felt or how I could help. Her thumb twisted around the back of mine and pulled it down. One-nil.

“Ok” I replied, not being committed into an outright refusal or straightforward acceptance. Our thumbs circled, she pulled hers back defensively. “How did the FODMAP diet go?” I asked.

“I didn’t try it”, she replied brusquely, “You don’t even know what’s wrong with me and you said the blood tests were normal” Her thumb snapped down, but I pulled mine back just in time.

There was a sharp tug on my left arm, twisted behind my back. “Fill in the alcohol template,” a voice behind me hissed. A box in the corner of the computer screen listed the boxes I had to tick before Jane left the room.

“So, um, how much alcohol do you drink on an average week?” I asked and the grip on my left arm relaxed slightly.

“well …” Jane paused, I circled my thumb clockwise sensing she was getting off-guard. “I’ve been drinking a bit more lately, things have been pretty difficult at work and John and I have been arguing quite a lot since he did his back in and hasn’t been able to work”.

“I’m sorry to hear that”, I replied, genuinely sorry. “How bad has it been?” I could have beaten her then, thumbs-down, but it didn’t seem fair.

“You don’t know anything! She could have cancer!” several voices screamed through the window, a copy of the Daily Mail was pressed up against the glass. I jumped in fear and surprise and Jane nearly caught my thumb under hers again.

I quickly composed myself and tried to ignore the din outside and focus on Jane instead.

I tried to concentrate on her answer, but the door flew open, and several patients were stood outside, “I’ve been waiting for twenty minutes”, “You’ve got my prescription wrong”, “My sick-note’s run out”, “When are you going to visit my mum?”

I turned back to Jane, just as my left arm was yanked higher up my back. “She’s overdue a blood-pressure check, that’s £3k you’ll lose for the practice if you don’t hit the target for this year”, the voice behind me growled.

“Could I just check your blood pressure?” I asked. Patients rarely object to have their blood pressure checked even if it’s entirely irrelevant to their presenting complaint. We let go of each other’s hands briefly while I fitted the blood-pressure cuff.

“You’re only in it for the money! You don’t care about patients!” The taunts from outside had reached a hysterical pitch and copies of the Express and Telegraph were shoved through gap at the top of the window. “A nurse could do your job!”

I straightened up and tried to ignore them. “I guess you’ve read some stuff online about what might be causing your symptoms?” I suggested to Jane as I unwrapped the blood pressure cuff.

“Actually, I haven’t”, she confessed, “You know what it’s like, whatever you put into Google, before long you’ve come up with cancer, and that just gets you worrying. You must hate it when your patients look things up online”.

I laughed gently, it’s funny how often patients say that to me. I replied,

“No, no – really I don’t, but sometimes I think it’s like a law of the internet that whatever symptom you’ve got, you’re never more than six clicks away from cancer”

Our thumbs hovered, neither sure whether to strike.

Someone had pushed their way through the crowd of patients at the door, “You’re needed now, at the commissioning meeting” they barked angrily, pointing at the clock on my wall.

A pain shot through my shoulder as my arm was twisted even tighter, “You need to document their blood pressure and a five year follow-up on the other template and give them smoking cessation counselling”

“Thirty year old woman DIES from bowel cancer after seeing her GP THREE times!” Someone outside the window shouted.

I couldn’t think clearly. I looked at Jane and struggled to think of what next to say. Our thumbs hovered. “What do you think I should do?” She asked. Her thumb rested on my index finger in submission. “You know what I’m afraid of, I don’t want it to be cancer, I just want to feel better”.

___________

Now is a good time to be thinking about power in the consulting room. Patients are learning to be assertive consumers, NHS England and commissioners are demanding evidence that we are ‘performing’, the government is devolving public health interventions from the state to the consulting room and the media is whipping up resentment towards professional power. It is easy for doctors to think of themselves as victims, but as John Launer warns,

Even in the era of shared decision making, the vast majority of consultations are led by the doctor’s beliefs about what it is right to investigate, how it is best to treat the patient, and when to make an onward referral. All of this power may be different to the kind of power exerted upon us by governments and managers. But it is still power, of a special and privileged kind. If we cannot recognise that it infuses most of the encounters we have during our working lives, we may be at risk of abusing it.

In the scene I described above the only battle the doctor could possibly win was with the patient. Unable to do anything about the bureaucratic burden imposed upon us, we may be at risk of venting our frustration on our patients.

Another reason we might blame our patients is because, as Richard Smith pointed out in 2001, we’re still hanging on to a bogus contract,

The bogus contract: the patient’s view

  • Modern medicine can do remarkable things: it can solve many of my problems
  • You, the doctor, can see inside me and know what’s wrong
  • You know everything it’s necessary to know
  • You can solve my problems, even my social problems
  • So we give you high status and a good salary

The bogus contract: the doctor’s view

  • Modern medicine has limited powers
  • Worse, it’s dangerous
  • We can’t begin to solve all problems, especially social ones
  • I don’t know everything, but I do know how difficult many things are
  • The balance between doing good and harm is very fine
  • I’d better keep quiet about all this so as not to disappoint my patients and lose my status

The new contract

  • Both patients and doctors know:
  • Death, sickness, and pain are part of life
  • Medicine has limited powers, particularly to solve social problems, and is risky
  • Doctors don’t know everything: they need decision making and psychological support
  • We’re in this together
  • Patients can’t leave problems to doctors
  • Doctors should be open about their limitations
  • Politicians should refrain from extravagant promises and concentrate on reality

At last week’s inspired Imperial college GP training day, author and lugubrious self-confessed addict Will Self and I talked about doctors and power. If there was a ‘bottom line’ to Self’s presentation it was about this bogus contract. “Imagine”, he asked us, “if instead of billboards over the North Circular exclaiming, ‘We’re going to win the war on cancer!” we were more honest and said, “We’re all going to get cancer if we live long enough, and we’ve all got to die eventually!”

Part of the reason the bogus contract still exists is because of, as Self put it, the deep reverence with which many patients hold their doctor. Our earliest experiences of the medical profession are often as a frightened, febrile child bought by an anxious parent to a calm, authoritative figure who makes things better.

As Edward Ernst recently explained, a great deal of what makes patients feel better is to do with power and personality including the therapeutic relationship with the clinician (empathy, compassion etc.), and social desirability (patients tend to say they are better to please their friendly clinician)

The therapeutic relationship was described by psychoanalist Michael Balint, who used the term, ‘doctor as drug’. Like any drug there are indications (where it can be used), contra-indications  (where it should not be used), risks (including tolerance and dependency) and side effects (including irritability and rejection or intoxication).

Used appropriately it is a potent force for good and as Foucault noted,

What makes power good, what makes it accepted, is simply the fact that it doesn’t weigh on us as a force that says no, but that it traverses and produces things, it induces pleasure, forms knowledge, produces discourse. It needs to be considered as a productive network that runs through the whole social body much more than a negative instance whose function is repression Foucault 1984: a 61. Quoted from DA Lupton

Physician Edvin Schei agrees,

The structural and symbolic power of doctors is what makes good and right healing actions possible. 

Doctors know that without power, they will lose their potency as therapeutic agents. Self argued that patients might resent this just as they secretly desire for their doctors to retain their magic. There is an ambivalence between reverence and scepticism in their regard for the medical profession.

Most of us agree that power is unavoidable and inevitably stacked in the doctors’ favour, not only over patients, but also over nurses and other health professionals and far beyond. Unfortunately we don’t do enough to teach medical students and doctors about power and how it is used. As Kathryn Montgomery agues in her wonderful book, How Doctors Think, we don’t do encourage medical students to challenge the philosophical assumptions which underpin the practice of medicine. Medicine is neither art, nor science, but an interpretive practice that makes use of clinical reasoning, but we teach it as if it were science treating disease rather than people treating people.

Sara Donetto studied medical students’ conceptions of power in the doctor-patient relationship and discovered that they were severely limited, viewing the imbalance as a consequence of patient ignorance that could be solved by professionals educating them. It was striking that my second-year medical student’s learning objectives included ‘giving lifestyle advice to patients’, but didn’t include anything about understanding values or interpreting narratives, in other words making sense of other people and themselves. Many medical students, and for that matter, doctors, are stuck on the second of Emanuel and Emanuel‘s four models of the doctor-patient relationship, ‘Dr Informative.’ Dr Informative’s conceptual development is stranded, as the authors noted back in 1992 and Self concurred today, on a model where both doctors and patients are rational consumers. It’s a thinking that underpins much of the policy thinking that shaped and continues to drive the recent NHS reforms and is a source of despair to those patients and professionals who know that there are higher levels to which we should aspire.

Patients and professionals as partners.

In 1998, GP Julian Tudor Hart wrote,

Progress in health care depends on developing professionals as sceptical producers of health gain rather than salesmen of process, and on developing patients as sceptical co-producers, rather than consumers searching for bargains.  Productivity in health care depends on complex decisions about complex problems, involving innumerable unstable and unpredictable variables.  These decisions require increasingly labour-intensive production methods, with ever deeper, more trusting and more continuous relationships between professionals and patients.

Doctors themselves have an ambiguous relationship with power. The reverence we enjoy can just as easily make us feel uncomfortable. Scepticism shared about, for example surgery for back pain, can be mutually reinforcing, but scepticism about the doctor’s clinical judgement is unsettling. My second year medical students described feeling uncomfortable with the trust and apparent reverence shown to them by a patient who revealed what it was like being severely depressed. They felt that they hadn’t earned the power that this trust conveyed. Bearing witness to intimate stories is a form of pastoral power. Handled sensitively and skilfully it can be enormously supportive and empowering for patients, but it can easily be abused.

Self raised the idea of the therapeutic state which is a form of Foucault’s idea of governmentality in which the state devolves responsibility for public health and action on the upstream social determinants of health like housing, education, nutrition and economic security down to individuals. Moral pressure is exerted on patients to behave in ways that fulfil public health objectives, so that obese individuals have to become thin in order to reduce the pressures on the NHS and contribute more to the economy. Pressure is exerted on patients who confess to their sins of being a burden, and then promise to repent by losing weight, returning to work and helping themselves.

It was interesting to watch the medical students reflexively slipping into role, most of them remembered their learning objective to give patients lifestyle advice at the same time as they interrupted their patients’ confessions. Like many more experienced healthcare professionals, they launched into this without exploring their patients’ priorities, or wandering too deeply about the efficacy of their advice, much less the philosophical basis of their practice.

Requiring the medical professional to put the needs of the state before the concerns of the patients in front of them undermines what could be an effective therapeutic relationship, but it’s not the only barrier to effective partnerships.

Because we don’t teach healthcare professionals to challenge the philosophical, political and economic foundations of their practice, they are insufficiently self-critical and sceptical about medicine’s role and purpose. This impedes their ability to be sceptical partners with their patients and makes them anxious and defensive when challenged, rather than interested and engaged. Insight is a teachable skill. Forced to act in an increasingly commercialised health-service patients are recast as consumers of health care rather than producers of health gain. The front line also becomes a battle-ground where clinicians are forced to protect limited NHS resources from demanding patients who want too much. Under conditions where patients pay for their care, they are encouraged to consume more medicine than they need. Commercial healthcare is incompatible with therapeutic alliances.

We have to live in a real world where both reverence and scepticism can co-exist. Without trust we will have nihilism and adversity; without scepticism we have ignorance and abuse of power. Trust and scepticism can flourish in partnerships which themselves depend on consultation times that allow doctors and patients to educate each other and continuity of care to allow them to get to know one another. Given more time, we could do a lot more to help patients and more to help patients help themselves.

The real question is, can contexts for clinical decision making be structured so that doctors’ interests coincide with those of patients individually and society collectively?

Julian Tudor Hart

Other reading: 

Arm in Arm with Righteousness. Iona Heath http://www.peh-med.com/content/pdf/s13010-015-0024-y.pdf

Why are doctors unhappy? Richard Smith http://www.bmj.com/content/322/7294/1073?sso=

Doctors as victims. John Launer http://pmj.bmj.com/content/89/1049/182.full

Power and Powerlessness. John Launer http://pmj.bmj.com/content/85/1003/280.full

Unhappy doctors and what can be done. Nigel Edwards http://www.bmj.com/content/324/7341/835

Foucault on the case: The Pastoral and Judicial Foundation of medical power. http://www.ncbi.nlm.nih.gov/pubmed/15666081

The idea for the thumb-war between doctor and patient came from the play Who Cares at the Royal Court

On (not) blaming patients

Should doctors blame their patients?

(edited version published as a debate piece on Pulse Today)

Working in Hoxton in one of Hackney’s most deprived wards, where the high rates of alcohol and drug abuse, cigarette smoking, domestic violence, child abuse and all kinds of other criminal behaviour may give me more reason than many GPs for finding fault and blaming my patients, I would like to argue, briefly, that blame is not helpful.

One doctor whose patients have more reasons than most to be on the receiving end of blame is Gwen Adshead, consultant psychiatrist at Broadmoor hospital. The violent crimes her patients have committed put our patients’ ordinary misdemeanors into perspective. She describes the dividing line between good and evil in an inspiring presentation for the Forgiveness Project.

There is, I think, a distinction between blaming someone and holding them responsible. Blame implies a finality, “You’ve bought this on yourself and you’re on your own now.” As doctors, we are bound to work with patients who may be blameworthy, but they may also be vulnerable and so it is not good enough for us to cast blame when we could be helping them take responsibility. This is what Adshead does by helping her patients move on from a position of “it wasn’t me, it was my illness”, to ‘it was me, but it was an old me and I want to engage with a new me”. Understanding why patients behave the way they do and engaging with them and helping them take control is hard, therapeutic work and it is part of doctoring. But this takes time and energy that many of us feel we are desperately lacking.

Adshead’s patients like many of our own patients are no strangers to blame, fuelled by media and political rage against the poor, the obese and now immigrants with HIV for being a burden on the NHS and the economy. Blame and shame are internalized and the harshest criticism is often self-imposed.

We should also be concerned by how blame affects us because blaming others is both symptom and cause of our own unhappiness. When we are overwhelmed we tend to blame our patients for demanding too much, but consultations where our patients are blamed leave both parties feeling miserable. Refusing to blame patients is a way of showing compassion for our own distress.

It is interesting, but unsurprising that one study of GPs who work in challenging areas found that,

Doctors were motivated by the belief that helping a disadvantaged population is the ‘right thing’ to do. They were sustained by a deep appreciation and respect for the population they served, an intellectual engagement with the work itself, and the ability to control their own working hours (often by working part-time in the field of interest). In their clinical work, they recognised and celebrated small gains and were not overwhelmed by the larger context of social disadvantage.

I recently reviewed some qualitative papers that looked at parents’ experiences of consulting with sick children. Parents were acutely sensitive to accusations of timewasting and hated being made to feel stupid for consulting either when their child was not sick enough to be worthy of the doctors’ attention or so sick that they had left it too late. The conclusion I drew from the papers was that what parents wanted from doctors was not just reassurance, but confidence. It was of little use to know that their child was OK at the doctors when what they wanted was the confidence to know that they would be able to cope with a sicker child later on. Giving confidence is empowering and empowering parents helps them take responsibility. Humiliated parents are disempowered and leave anxious and upset. The next time their child is unwell, they seek help elsewhere in the hope that their fears won’t be belittled or dismissed.

It is frequently claimed that there should be no rights without responsibilities driven by a steady rhetoric of the powerful telling the powerless how to behave. But it is with power that responsibility lies. The powerful can access what they need or desire through force, wealth or contacts without resorting to rights. Rights are to protect the powerless and are therefore unconditional. When we talk disparagingly about ‘the entitled masses’ or ‘rights without responsibilities’ we miss this important distinction. Our patients need empowerment not blame. The right to compassionate, empowering care is unconditional. It is at the heart of why the NHS is so precious. And if the NHS is to be sustainable for the future, patients and professionals need to be partners, not enemies.

Starving you back to work: Why Tory policy of cutting benefits if you refuse treatment is vile

Really important blog by Alex Langford. Worth reading with this paper about patient perceptions on patient-centred care and quality improvement: http://www.biomedcentral.com/content/pdf/s12913-015-0770-y.pdf

The Psychiatry SHO*

The Tory manifesto it out. Like many others I was immediately drawn to page 28, where David Cameron explains how he will ‘help you back into work if you have a long-term yet treatable condition‘. But their spellchecker must be on the blink because they obviously don’t mean ‘help’, they mean ‘threaten’.

‘We will review how best to support those suffering from long-term yet treatable conditions, such as drug or alcohol addiction, or obesity, back into work. People who might benefit from treatment should get the medical help they need so they can return to work. If they refuse a recommended treatment, we will review whether their benefits should be reduced’

The idea of starving sick people back to work was first raised by the Tories last year, but despite the fact that it went down like a sack of lead crap, they’ve stuck with it.

I viscerally…

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An expert in me.

My doctor is an expert in me. We have known each other for nearly 20 years. I don’t remember the first time we met, but I do remember we got to know each other over a period of a few months when I was first diagnosed with high blood pressure. In those days you used to see a GP for high blood pressure, though nowadays it is a nurse or even a machine that checks it and uploads the results to your medical record. We had time then, in the appointments that seemed so much less hurried than they do now, to share some details of our lives.

My doctor is an expert in me. When my wife began to fall ill, my doctor already knew quite a bit about us. I remember very clearly the day she came round to our house. I thought that Jean might have flu or a chest infection, but my doctor knew straight away that it was more serious than that and she stayed with us until the ambulance arrived.

My doctor is an expert in me. My doctor was away when I had my heart attack, but she called round as soon as she got back. I had only been home from hospital for a day and was struggling to look after Jean. My doctor was a tremendous help then, organising district nurses, social services and carers to come and help.

My doctor is an expert in me. When I go to see her it’s like seeing an old friend. She doesn’t need to search her computer to check what medication I am taking or find out how many heart attacks I have had. She asks how I am coping without Jean instead of wasting her time talking to me about smoking.

I saw my doctor on Easter Sunday. She was working in her practice all alone. I knew she was going to be there and I bought her a cake. I was the only patient there. She explained that the practice had to stay open so that patients wouldn’t go to the hospital A&E. I wondered if the other patients knew the practice was open and she said they had all been sent a text message before the weekend. It was two in the afternoon and I was the only patient she had seen all day. She made me a cup of tea and we sat together in the practice garden and shared the cake. We wondered whether in the future GPs would ever get the chance to know their patients. More time for patients and professionals to get to know eachother doesn’t seem to be part of any party manifesto. Personally I am happy to wait to see my own doctor, but if I didn’t have my own doctor, what would be the point in waiting to see a stranger who might be an expert in all sorts of things, but knows nothing of me?

My doctor looked tired and unhappy. She was due to retire last year but couldn’t find someone to take her place and she couldn’t bear the thought of the practice being forced to close, so she offered to keep working until a replacement could be found. There are not enough GPs. Politicians are desperate to appeal to voters by promising ever more without facing up to the reality that too few people are already trying to do too much. My doctor thinks that in the future GPs won’t see their own patients, but will manage teams of healthcare assistants, nurses and who knows, even robots to see their patients for them. I think it’s already getting like that.

Perhaps some things will get better. Perhaps one day they will fix it so that everyone who needs to can access my medical record when they need to. Perhaps one day my hospital appointments won’t get cancelled and then rebooked without my knowledge. But my fear is that a GP of my own, an expert in me, when I really need them, not on Easter Day, but when life has made me a person who needs to be known, will no longer be available on the NHS.

Better together

Always keen to provoke doctors, Professor Chris Ham, head of the wealthiest and most influential health think-tank in the UK, The Kings Fund asked yesterday,

He received a predictable mixture of replies, but the most important was from Public Health consultant Gabriel Scally,

Last week a group of Hackney GPs working for our locally run, managed and operated, not-for-profit out of hours provider CHUHSE met to discuss our clinical audit tool called Clinical Guardian. We were joined by a director from another Out of Hours provider who described how it was developed and how useful it has been.

Clinical Guardian allows all the documented cases to be looked at anonymously by other clinicians so that the quality can be assessed. They look at 25% of each clinician’s cases and give each case a rating of ‘excellent’, ‘good’, ‘satisfactory’, ‘reflection’ or ‘concern’. These are then compared with the average results for other clinicians to give a performance summary. The one below is mine and you can see that I come out below average.

CG

This puts me in an amber category so that next month they will look at 25% of my cases again. If I improve (I know what I have to do and sincerely hope I do!) I might improve enough to move up to a blue or green category and only 10% of my cases will be reviewed. Cases that are graded for ‘concern’ are immediately emailed to the clinician concerned and cases for reflection can be responded to on the Clinical Guardian website. One of my cases for concern was a woman who might have had a DVT. I thought she could wait until the morning before assessment but the team disagreed. Cases for reflection in my case were usually because I had failed to document enough detail.

The experience of the doctors working in Bristol was that continually auditing their doctors’ work and discussing cases significantly improved the quality of their documentation and the safety of patient care.

When I was flagged up as ‘amber’ I was asked to meet with two of our other out of hours GPs and we discussed all the cases for concern over the course of an hour in a critical, but friendly, educational supervisory session. I’m very used to clinical supervision and opening my practice up to scrutiny  which undoubtedly softened the blow, but many GPs and consultants spend their lives working without ever having their practice inspected and audited like this.

The meeting last week with other GPs was, at times tense. They didn’t like being being judged on documentation that stripped a consultation of all the vital elements and quality markers of rapport, empathy, compassion, hands-on-skill, complex-shared-decision making and confidence-building. Nor does it include what patients thought of the consultation, although feedback for CHUHSE has been excellent. This audit looks only at the quality of documentation which is only one element of quality care, but nevertheless, we all agreed, an important one. In time, as we discussed our concerns, we gradually came around to the conclusion that a process of regular clinical audit and personal feedback – especially with an emphasis on education and support would be good for us, our patients and CHUHSE.

I’ve looked at the evidence and argued in a forthcoming paper that every clinician should have regular clinical supervision for as long as they are involved in patient care. The clinical uncertainty, ethical complexity and emotional engagement that we face does not fade with experience. I recently had the opportunity to go to a Schawartz round in a London hospital where a panel that included a consultant and a junior nurse sat in front of an audience that included any member of the trust who chose to come – there were all types of doctors, nurses, physiotherapists, and more. The panel presented a case that for them was especially important. The consultant began, but before he could finish was choked with tears. A facilitator sensitively introduced the next speaker while he composed himself and he later finished his version of the events. The details of the case, I’ll not share out of respect for confidentiality. The round lasted for an hour and the audience were invited to respond. In some ways it resembled a large Balint group, except that comments could be directed to the panel and they could respond. The facilitators explained that we weren’t there to give advice, so much as help them make sense of what had happened. We were especially moved by the nurse who said at the end, “I thought it was only the most junior members of staff who felt like this”. It is through role-modelling that virtues such as humility are learned and younger clinicians learn that vulnerability is normal.

When I (or indeed, almost any clinician) discusses the intensity of clinical practice, other professionals such as social workers or psychologists for whom clinical supervision is an essential part of their work, are astonished that we go without.

If we are to survive and sustain high-quality, safe and compassionate care in the face of unprecedented demands to do ever more with ever less, we need to support one-another. One of the best ways to do this is to open our practice and ourselves up to clinical audit and regular supervision- within a supportive, ‘just-culture’. As Don Berwick said after Mid Staffs,

The most powerful foundation for advancing patient safety in the NHS lies much more in its potential to be a learning organisation, than in the top down mechanistic imposition of rules, incentives and regulations.

Further reading:

“We view clinical supervision not as something imposed on medical professionals by their regulators, managers or those responsible for their ongoing training but rather something to be provided for and championed by doctors as something that helps them in their professional lives. In a world where pressures on many professions seem to increase almost logarithmically, it becomes harder to create the space for reflection – and yet that is when it is most needed”. Highly recommended Book: Clinical Supervision in the Medical Profession

Moving on from Balint: Embracing Clinical Supervision. Essay by John Launer

Listening and learning from people living with dementia

Peter

My father at his 79th birthday in 2012

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

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

Context matters.

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

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

Getting lost.

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

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

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

The importance of a diagnosis and fears about screening.

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

Better relations between doctors, patients and carers.

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

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

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

Thinking about care and carers.

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

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

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

Continuity of care.

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

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

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

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

The Case for Intelligent Kindness

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

The virtuous cycle of kindness:

IK

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

by Penelope Campling