All change?

“But why do doctors have different opinions about what is the best treatment? There are thousands of people going through this every year—why don’t they know which works best?”

I try to explain to a member of my antenatal class who has called me for reassurance, something about the nature of medicine, about how little research there is in some areas, and how contradictory the results can be. But it’s not really what this patient wants. In a burst of honesty her doctor had the temerity to admit that variations in practice exist. Instead she wants a cut and dried answer because that is her expectation. Behind her are years of conditioning to believe that as medicine is a science it must produce hard facts and straightforward answers.

To share power, patients need to acknowledge that they deserve it

If only it were that easy we could just plug ourselves into a computer for a diagnosis and treatment printout. Clinical judgment would be redundant. But if patients wish to increase equality with doctors they too will need to face the uncertainty that doctors work with every day.

In my work as an antenatal teacher and patient supporter, both doctors and patients often expect me to take the patient’s side. Even if I agreed that there are sides to be adopted I find that sometimes I cannot support the perspective that doctors are always at fault. To achieve a more equal relationship patient attitude and behaviour will also need to adjust.

The drive towards patient choice and involvement in care is truly a double edged sword. When treatments work and patients feel that they have participated in achieving their own wellbeing I have seen it enhance their confidence and feelings of worth. But acquiring enough knowledge about their condition to make decisions can be a steep learning curve, and is simply unrealistic for some. And with rights comes responsibility—when treatment does not work they literally have no one to blame but themselves. Not everyone wants or can handle this responsibility.

To get the appropriate level of involvement for themselves patients should be clear about what sort of patient and doctor relationship they want. I cynically imagine a questionnaire for all new patients: “Please give me the whole truth; only the good news; just a prescription, thank you.”

Most complaints about doctors that my clients bring to me are not about the actual treatment, but about communication. But patients themselves are not always skilled communicators. A patient I was supporting recently had complained of a lot of pain. When the consultant arrived and inquired, “How are things?"—a perfect opening for all manner of complaints—the patient replied, “Fine, thank you.” By adopting a “mustn’t grumble” attitude this patient risked not getting the treatment she needed. Patients should feel able to state their symptoms in an assertive manner without worrying that they are whingeing or being difficult; otherwise they collude in their own powerlessness. To share power, patients need to acknowledge that they deserve it.

To relate to doctors in a more equal way patients will also need to change their ways of thinking about them. Media portrayal has a lot to answer for here. Virtually every page of any television guide contains the word “doctor.” The stereotype in medical dramas of the handsome, caring maverick, who breaks the rules to help his patients, who is emotionally caught up in every case, is simplistic and pervasive. This is worlds apart from the wholly appropriate level of detachment that facilitates rational decision making and prevents emotional burnout. Patients sometimes complain to me that doctors seem “uninvolved.” I often feel that they are demanding from doctors the sort of emotional support that would be far better given by a relative, friend, or fellow patient. They may need to be more realistic about what doctors can offer.

A lot of the debate on the changing relationship between patients and their doctors concentrates on the adjustments that doctors will have to make. It works on the extreme stereotypes of the “big bad” doctor versus the “poor downtrodden” patient. It is true that some doctors still do not recognise that both illness itself and treatment can be so detrimental to self image. I wish I could say that the “get a grip” attitude is a thing of the past. And I know that patients have, at cost to themselves, told personal stories of appalling treatment and put their pain on public view, to say, “This cannot go on.”

But there is a price to be paid for the gains they will make. If they really want equality patients are going to have to do some changing too. They must face uncertainty, take responsibility for decisions, and communicate clearly, all based on a realistic view of what doctors can offer. Are all patients prepared for that?