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.
Further reading:
I explain what happens to Sam next in an article for the London Review of Books.
‘Health for me’ a sociocultural analysis of healthism in the middle classes.
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
A Better NHS 
I’m very pleased to have found your blog. I’m glad Sam came back. It sounds like an important consultation. This really is the art of General Practice, to integrate the scientific knowledge, the best evidence that is available with the individual sat in front of you. To understand the person beyond cliches and stereotypes, beyond pathways and tick boxes and flowcharts. It is fascinating and can be rewarding, but it is messy and complex and that is why it is difficult to capture it in sound bites and simple models.
As a working GP, but also has someone with chronic health problems at various points in my life, I deplore the idea that all that is commercial is better, and that therefore patients should be consumers. I absolutely accept that the patient isn’t always at the heart of healthcare as they should be. But we should strive to improve this, not accept a crappy model of consumerism instead.
Do policy makers really believe that healthcare will be better when money is the motivating factor? If money was the motivating factor I would work the hours I’m paid for, not be late to pick my kids up, again, because someone wanted to “just have a quick word” about their health. I wouldn’t be in the surgery at 5am every Saturday morning to make sure referrals are sent off on time, we’re reviewing everyone we should, researching patient’s conditions to make sure my knowledge is up to date and writing letters to housing departments, employers and schools. I wouldn’t be taking 25 minutes with my “Sams” but cutting them off after their allocated 10 minutes, and there would be no house visits for someone who could physically get to the surgery but just can’t because their life is in chaos at the moment.
Finally (sorry, I do go on, it’s why I don’t comment on blogs very often) policy makers so often focus on the cost of primary care and the consequent secondary care and they do not focus on the cost of our absence, because that is not measured so often. If I am merely the front face of a product, and the patient is a consumer – if they wish a CT scan twice a year for their migraines – do they get it? What exactly does this consumer status entitle us to? A less professional, less individual and more costly service.
I found this from a long ago essay and have NEVER refered to a patient as a consumer / customer but in addition to your thoughts how about,’ the social relationship between patients and professionals is one of a collaborative autonomy, where unequal knowledge and power is acknowledged to exist, but accepted when the interests are synergistic and information is shared in the decision making process. This would offer a more honest and relevant label for someone in a relatively dependent state than an ILLUSION of empowerment which shrouds the SUBORDINATION of people within the culture of the market (Williams, 1992) . My capitals and the full reference lost – sorry .
Apologies in advance if this is the wrong place to post, but I’m commenting here in response to a brief but intriguing Twitter conversation last night, started by @SuzetteWoodward with the enticing prospect of a follow-up blog from @mellojonny in due course. It centred on the use of the term ‘customers’ to describe patients. See here and here for the links. Anyway, this is my plea to not write off the alternative term ‘consumer’ completely. Well, at least not in some circumstances.
‘Patient’ is a fine term to use of a specific individual within the context of the therapeutic relationship, but could apply to a person under anyone’s care (doctor, nurse … or spouse, parent, friend). It gives social permission for said individual to exhibit illness behaviour which provides (sometimes implicit) permission for a care-giver to act in that person’s interest.
But, beyond that specific context, ‘consumer’ may be a preferable term.
To be clear, I am not using the term ‘consumer’ in the sense of ‘consumerism’ in a commercial context. I’m using it in its pure form of ‘one who consumes’. If anything, I’m thinking of the word as a welfare economist would use it to refer to a consumer of a public good. But, I freely admit the term does carry a strong association with the worst excesses of a market economy.
We all consume healthcare, irrespective of whether or not we are patients, especially in relation to public health measures (disease surveillance, screening services, health promotion messages, herd immunity, sanitation and the like). And some medical interventions, such as statins and aspirin, are preventive rather than therapeutic, so is it appropriate in such cases to label the recipient a patient? They may be perfectly fit and well in all other respects. Perhaps being a patient implies a degree of unwellness?
There is also the sense that the term patient has a degree of passivity about it. Indeed, in other contexts, the word can also mean to ‘wait quietly, without fuss’! This may create the perception of a power imbalance between the care-giver and the care-recipient and could imply an abdication of personal responsibility for being part of the solution. The idea of a doctor-patient relationship, for example, has the potential to conjure up a very clear demarcation of roles – one knowledgeable, powerful and licensed; the other possessing much less knowledge and power, with little formal permission to take matters into their own hands.
By the same token, I suspect that many individuals would value the term patient for precisely the exact same reasons, because it reinforces their perception of confidence in the healing powers, authority and agency of the doctor! And, as mentioned, it can legitimise their illness behaviour.
I think it makes less sense to talk about people as patients when you move beyond the realm of the individual therapeutic relationship. We may be infrequent users of healthcare in any direct sense, but we still have a very strong indirect indirect interest in how it is provided. Healthcare has a very broad social function – it will impact all of our lives at regular intervals (from birth to death) through our loved ones, family, friends, acquaintances, workmates, etc. Ultimately, we will all be touched to a greater or lesser extent by the healthcare system around us, but we are not all always patients.
Clearly, there are no obvious candidate replacements for the word patient, but ‘consumer’ may strike the right balance, providing it gains a degree of acceptance and can be co-opted into this use. A consumer is not a passive recipient, but an active participant in an exchange. The term does not, of itself, imply any direct exchange of money (unlike customer), it has connotations of rights, expectations and responsibilities, and it is broad enough to reference our collective interest in how healthcare is delivered. Just because I am not an A&E patient right now does not mean that I wish to have no say in how A&E is provided. I participate in the consumption of such services as a consumer of a public good.
Ultimately, this is a tricky one! We can probably rule out client, user, service user, stakeholder and co-producer as being too specific, too loaded, too bland or too technical. So, I would vote for consumer. But, I’m sure there at least a hundred reasons why that’s a bad choice, which I have not yet thought of!
So good luck with your blog. It’ll be fascinating to hear what you and others have to say on the matter.