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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