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/