Knowing one another

Goya: Self Portrait with Dr Arrieta

Getting presents from appreciative patients when you leave a practice is lovely, but coming back presents are an unexpected pleasure.

I recently returned to my usual practice after four months spent helping out at a different practice, working for our Out of Hours GP service and finding my feet in an academic post. The welcome home from patients and staff has been exceptionally warm and friendly. Many of my most frail and vulnerable patients, some with only a few months left to live, some with new diagnoses of cancer, most with multiple multi-morbidities (co-existing medical conditions) had arranged to see me, so that my first six sessions were full of familiar faces. I’ve been extraordinarily busy trying to catch up, but these have been some of my most enjoyable days in more than a decade of general practice.

What was so overwhelmingly apparent, was how important it is for doctors and patients with long-term problems to know one-another.

When I first met Dylan he was wrapped in several layers, a woollen jumper over a sweatshirt and a puffy jacket over the top, despite the mild weather. I remembered working as a junior paediatrician in a clinic for children who were failing to thrive, all of whom would be bought in wrapped up to make them look as big as possible. The more layers we had to peel off, the thinner the child was underneath. The list of possible reasons encompasses almost everything from cancer which was fotunately rare to parental neglect which sadly wasn’t. Dylan’s mother, Kim, who I didn’t know, had seen three or four different doctors with Dylan in the weeks before me, and had taken him to A&E several times. “None of you lot are doing anything for him,” she complained angrily, avoiding eye-contact and refusing to sit down. 

It took a few weeks of regular appointments to  diagnose Dylan with Coeliac disease and then begin to gain Kim’s trust. It took a few months to help her engage with a parental support group and to see a psychologist to help with her panic attacks. About a year after we first met, she told me about her husband, Steve, who was due to be released from prison and needed a GP and help with his mental health and drug problems. I didn’t get off to a good start with Steve, the wall of my consulting room still bears the scars from where he slammed the door open knocking a hole in the plaster after I refused to give him a prescription for diazepam. Three years later, I’m still not prescribing diazepam and Steve is relatively stable on a methadone prescription and we meet on friendly terms every month.

Stan comes in to see medical students with me every few weeks. He has end-stage chronic obstructive pulmonary disease, meaning he can barely breathe. He pulls along an old shopping basket on wheels with an oxygen cylinder inside attached to a long hose with plastic prongs at the end that stick up his nose. He insists, to his wife’s frustration, on walking to the surgery even though he has to stop every few steps. “The only time I go outside these days is to come here, and I only come here because it’s Doctor Tomlinson asking”, he tells the medical students. His wife, Maureen suggests it not much of an exaggeration. Last year I diagnosed Maureen with bowel cancer.

Maureen has spent a good deal of her life under the care of gynaecologists and pain specialists with unexplained pelvic pain. An enormous number of scans, surgical procedures, hormonal treatments and analgesic cocktails served only to distract her from a tempestuous marriage with little effect on her pain. When she was diagnosed with cancer she seemed relieved as much as anything. Many, if not most , presenting symptoms in General Practice remain ill-defined and undiagnosed. They are distressing for patients and frustrating for GPs and make up a considerable part of our workload.

This has probably always been the case. More than 60 years ago, the introduction to a book containing 33 autobiographical accounts by doctors of their experiences as patients with illnesses as diverse and serious as heart failure, cancer and tuberculosis, stated,

This collection of case reports can only emphasize again, and, I believe, in a peculiarly urgent and moving way, how essential it is to treat the whole patient, unless we as physicians want our patients to seek relief in pseudo-religious or fraudulent medicine. The first need is not, in my opinion, diagnosis and specific treatment of so-called psychosomatic diseases, but the recognition – which is not new, but so frequently forgotten and ignored – that every disease is psychosomatic, that is, that it affects both body and soul.

I discovered only recently that Kim is Stan and Maureen’s daughter. I found out when I was seeing Stan with my students. I have been teaching medical students how to take a narrative history, how to listen to and listen for the stories patients have to tell, rather than just the stories we want them to tell. Kim, Steve and Dylan all played their role in how Stan was affected by his breathing and how Maureen and Stan are able to deal with life and illnesses.

In an introductory paper to the use of narratives in medical education, Professor Trish Greenhalgh notes that narratives,

offer a method for addressing existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and may even constitute, people’s illnesses.

In contrast to a structured medical history, taking a “narrative history” means allowing a patient to tell their story in their own way, choosing themselves which events are significant, giving context and perspective to the social, spiritual and emotional aspects of their condition,

narrowing the gap between objective assessments of wellbeing in illness and subjective experiences which are varied and diverse; developing a more attuned dialogue between physicians and patients, based on a thick understanding of illness … [and] providing medical staff with a concrete understanding of the impact of the illness on the life-world of the patient.

Another professor of general practice, Barbara Starfield suggests that what GPs strive to provide is, ‘person-focused care’, based on an accumulated knowledge of a person and their needs in the broader context of their life. In order for knowledge to accumulate, relationships need to develop over time. Explaining what an evidence-based response to Mid Staffs would look like, Greener points out the importance of giving professionals the time and space necessary to provide person-focused care and working with their intrinsic motivations to do this, rather than adding targets and protocols. Munthe, Greenhalgh and many others note the importance of allowing time for narratives, the stories patients tell about their lives, that give their symptoms context and meaning. Every interaction matters, but one meeting is rarely enough, especially when caring for patients with complex or long-term conditions. Getting to know a patient as a person therefore depends on continuity of care, a point repeatedly emphasised by many doctors who have experienced being patients themselves.

For this kind of care to flourish, the NHS has to allow and actively encourage these kinds of relationships between professionals and patients to develop. Epstein contrasts transactional relationships in which patients are likened to consumers, favoured by many in the health policy world, with interactional relationships, in which the patient is a person:

At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end a transactional approach focuses on knowledge about the patient, information as commodity, negotiation, consent and individual autonomy.

Leaving my patients for four months and coming back has made me realise more than ever before the importance of long-term caring relationships, of working through difficulties with patients and getting to know one another.