Patients “taking back control”BMJ 2022; 377 doi: https://doi.org/10.1136/bmj.o1204 (Published 13 May 2022) Cite this as: BMJ 2022;377:o1204
Many years ago I argued that there is a bogus contract between doctors and patients.1 Patients have an exaggerated idea of how much doctors can heal them, while doctors are painfully conscious of their limited powers. Doctors are reluctant to be fully honest about their limitations, partly worrying that their therapeutic potential might be reduced, but also perhaps worrying about loss of status, salary, and even power. For patients it's satisfying to think that doctors can fix whatever is wrong with you, meaning the bogus contract continues. But I see signs of it cracking. It's time for patients to “take back control,” recognising that those with the power—doctors in this case, although they may not choose to acknowledge it—rarely give it up without a struggle.
Most of healthcare now is concerned with people with long term conditions that cannot be fixed by doctors. The reality for patients with, for example, diabetes, chronic obstructive lung disease, and osteoarthritis is that how well they do depends much more on them, their carers, and their community than on the doctors and other health professionals, whom they see on average for a few hours a year. This is not an ideological position but a fact, one that in the light of the bogus contract both sides may be unwilling to accept.
The draft advice from the National Institute for Health and Care Excellence on osteoarthritis says that exercising and losing weight are better responses than taking regular painkillers.2 I find it extraordinary that NICE should take so long to reach this recommendation: it seems so obvious, but it does represent a shift in responsibility and potentially power, which is perhaps threatening to both patients and doctors.
I have personal experience of this in that I developed—well, exacerbated—pain in my knee after doing two 5k runs in a week. My first response was to stop running, which was disappointing as I was once serious about cross country running. My main worry was whether I would be able to do the 90 mile walks I do once or twice a year. A retired orthopaedic surgeon, who is a friend, recommended that I stay away from orthopaedic surgeons, but perhaps see a physiotherapist. I did see a physiotherapist a few times and then began to do every morning the nine exercises he recommended. I also found, like many others, that there was no pain when I cycled, and it does seem that cycling reduces the pain. As cycling is my main means of transport that was convenient. After six months I tested my knee on a walk of about 70 miles over five days ready to bail out if the pain became too much. I discovered that the pain diminished as I walked.
I'm not suggesting that I'm a paragon of virtue, and I stupidly brought on the pain by running longish distances after not running much at all for a while. It just seemed to me doctors couldn't help me much. Perhaps my pain will progress to the point where a knee replacement might be best, but I want to do all I can to avoid reaching that point.
I encounter a much more important example in The Cracks that Let the Light in: What I learned from my disabled son by Jessica Moxham. Ben, her disabled son, has some 150 appointments a year with 19 different specialists, giving her an excellent opportunity for distinguishing good from poor professionals, with all of the difference having to do with the heart not the head or the hand.3
Moxham describes how she moved from being dependent on professionals to feeling more confident in her own judgements. Earlier in the book she described how she, not a natural rebel, had moved to giving her son blended food when professionals told her that she couldn't advise her whether it was a good idea. Her independence came when her second son Max was born.
“We see a health visitor occasionally, and doctors for specific issues, but there is only cursory interest in what or how we are feeding him or what he [Max] is doing. I am so used to discussing every aspect of Ben’s life with numerous people that I now wonder if I have become institutionalized. I see every aspect of Ben’s life as needing some form of medical consideration when maybe I should be more confident in what I think is best. I have a kind of clarity in the period immediately following Max’s birth, helped by feeling confident about my ability to look after him, where I start to feel empowered to decide what is best for both my children.”
Moxham describes as well how she moved from a medical to a social model of disability. “At the course I find out about the social model of disability which makes a distinction between impairment (for example, Ben’s inability to walk) and disability (the restriction he experiences faced with a flight of steps), versus the medical model which sees a disabled person as someone (or a collection of issues) to be fixed, concentrating on what is wrong with them. We talk about the difference between a medical model of individualism—each person’s impairment is their problem alone—and a social model that sees communality in the way people are treated and their experiences.”
In the Lancet Commission on the Value of Death, which I cochaired, we advocated that death and dying move from being primarily the territory of health professionals, which historically is a comparatively recent development, to being seen much more as a family, community, social, and cultural process. Health professionals will still have important roles to play, particularly providing effective pain relief, but they will be partners rather than leaders. Such a development could relieve doctors from the pressure to overtreat at the end of life, something that happens too commonly. This move from health professionals to families and communities is happening around the world with the Compassionate Communities programme, and we describe in the Commission a large-scale development in Keraka, South India.
A disciple of Ivan Illich, who saw major threats in the medicalisation of ever more aspects of human life, I have long thought that it would benefit both doctors and patients if power, yes power, shifted more from doctors to patients/citizens. The need for this shift has become more urgent with the epidemiological transition from infectious disease to non-communicable conditions. Because I recognised the need for the shift that I agreed to be the chair of Patients Know Best, which works to bring together all of patients' care records (from hospitals, mental health, general practice, and social care) and not simply give patients access but also control. Fifteen years ago, when we started, such a move seemed revolutionary, but increasingly it's recognised as essential to improving care and the relationship between patients and doctors, to the benefit of both. It's a step to move beyond the bogus contract.
Competing interest: I am the unpaid chair of Patients Know Best, but I have equity in the company. I cochaired the Lancet Commission on the Value of Death. All the views expressed here are my own.
Provenance and peer review: not commissioned, not peer reviewed