To my surprise, Sam, the young man with diabetes I discussed in my recent post about individual responsibility came back to see me. I was surprised because the previous times I had asked him to come back he failed to attend. Some advocates of individual responsibility would have me fine him for that, but I believe that doing so would not only be almost impossible to administer, but would carry the risk that he would be less likely to return.
This time, he brought in a piece of paper in which he had written down his blood sugar results 2 or 3 times a day for the last 2 weeks. I only have 12 minutes for each appointment, but given his circumstances and how infrequently he comes in, I spent nearly 25 minutes listening to his concerns and trying to build on our relationship sufficiently to feel that he trusted me to the point where he would come back for a longer appointment to discuss things in more detail. It was a difficult consultation in which I felt sure that there were a lot of issues he wanted to discuss, but he was guarded and tense much of the time. A patient responding to my previous post about Sam pointed out that doctors can make patients feel uncomfortable when they ‘try to get to know them’. There is a fine balance to be struck between helping by exploring Sam’s underlying problems and intruding. Nevertheless, it seemed as though we was discussing the diabetes for my benefit, not his, and his real concerns were destined, this time at least to remain hidden. Patients are often keen to please and are rewarded by doctors congratulating them on their blood results, blood pressure or improved personal habits. In Sam’s case he could see I was relieved and happy that he had come back.
So often this is the case. The doctor’s agenda is driven by the desire to improve patients’ health, prevent complications, tick boxes and collect data (upon which our pay and hence ability to look after our patients depends). My patients’ agenda is very often different. Strange as it may seem, their primary aim may not be getting better control of their diabetes or reducing their risk of another heart attack or cancer.They may want reassurance or an explanation rather than treatment, very often they want relief from symptoms that are far less clinically significant than the impending kidney failure that I am worried about. They may wish to discuss problems that are embarrassing such as incontinence, sexual dysfunction, domestic violence, panic attacks or suicidal thoughts while I am trying to discuss their chest x-ray result or their recent hemoglobin level. To fail to uncover the patient’s agenda, no matter how excellent my management of the presenting disease will leave the patient dissatisfied and still suffering. The relationship between doctors and patient is too complex for patients to be treated merely as consumers of healthcare.
The relationship between doctors and patients is complex, but ultimately it is one in which health gain is the aim and co-production the method. Retired GP Julian Tudor Hart and discussed the issue of patients as co-producers of health in detail in his essential book, The Political Economy of Healthcare,
Progress in health care depends on developing professionals as sceptical producers of health gain rather than salesmen of process, and on developing patients as sceptical co-producers, rather than consumers searching for bargains. Productivity in health care depends on complex decisions about complex problems, involving innumerable unstable and unpredictable variables. These decisions require increasingly labour-intensive production methods, with ever deeper, more trusting and more continuous relationships between professionals and patients.
This relationship is a partnership. Quite frequently I learn about new medical evidence while researching a patient’s problem. Although the information is often freely available online, it is difficult for most people to judge the merits or interpret trials. It needs interpreting and applying to both my own and my patients’ contexts. This is a highly effective way of learning. Because of the way my searches are recorded and my evidence has to be presented for my annual appraisal, I can see that this happened over 50 times last year.
Kim, a young woman in her 20’s came to see me with severe bladder pain. She had been diagnosed by a colleague as having ‘interstitial cystitis’, a condition for which the treatment is frequently unsatisfactory. She had been reading on internet chat rooms about the effects of ketamine and wanted to know what I thought. We spent a few minutes together looking at the information she had discovered and then looking for any published medical papers about ketamine. I was able to confirm that her fears were justified and that ketamine can cause serious bladder damage. She could have found the same information, but there is a significant difference between reading something and having it confirmed from a trusted fellow human. She was very concerned about confidentiality and wanted help with her addiction, but did not want to see a specialist. We arranged to meet again to monitor her symptoms, discuss the risks again in more detail, and refer her to a psychologist.
I am unsure where the demand to convert patients into consumers comes from although I suspect that it is commercial pressure to sell medical care to an anxious public. This is often presented differently.
Humana is an international health insurance company. They are now working in the UK to develop commissioning support for the department of health. In a paper, Where Patients become Consumers they say, “What will happen when, instead of being passive consumers patients become informed choosers?”
This is disingenuous bullshit. Patients have never been passive consumers. Even in the dark old days of medical paternalism patients have been informed. I have 2 nineteenth century home guides to medicine on my bookshelf and patients have combined physician advice with their own beliefs and customs from the earliest recorded times. In the last 30 years at least the medical profession has taught not only that it is important to involve patients in decision making, but has taught doctors how to involve patients.
When I help my patients I am professionally obliged to take an active role in which I explore my patients ideas, concerns and expectations. It may be because we have not been successful enough that Humana can claim the idea as their own. By emphasising repeatedly their stated aim to empower individuals they are using exactly the same marketing techniques used for consumer electronics, hair products and ready meals: the promise of greater individual freedom.
But lurking behind medical consumerism is a blatant profit motive. The consumerism being advocated is one in which the medical profession is expected to take an increasingly passive role, accepting at face value patients’ demands and acquiescing with a minimum of questioning. The model will be to replace doctors as far as possible with people not trained to explore patients minds, but trained to signpost, refer, issue a prescription, hand over information, perform a procedure and so on.
Patients, for whom anxiety is a powerful driver of behaviour when health is at stake, will be easily duped into believing that they need more health care than they do. There is an enormous amount of healthcare advertising encouraging exactly that. When patients are consumers, there will be no ‘watchful waiting’, no commitment to work on difficult relationships like mine with Sam, no meaningful co-production.
I explain what happens to Sam next in an article for the London Review of Books.
Michael Keaney, (1999) “Are patients really consumers?“, International Journal of Social Economics, Vol. 26 Iss: 5, pp.695 – 707
Ryan Madanick,What do your patients fear?
Tudor Hart, The Political Economy of Healthcare. 2nd ed.
Shared Mind: Communication, decision making and autonomy in serious illness. Ronald M. Epstein, MD1 and Richard L. Street, Jr, PhD2