Just how demanding can we be before we blow it?

Hilda Bastian argues that assertive, articulate patients who swallow up doctors time with their lists of questions are increasing health inequalities by leaving needier patients waiting

I dont remember exactly how I learned to be a "good patient." I cant remember which was more powerful-the examples of my mothers behaviour and that of others in the waiting room or hospital, or the instructions to "Be good, to not complain about pain, to not take too much of these important peoples time. I do remember learning clearly that part of being "good" at the doctors was to say whatever he or she wanted to hear. At the doctors, it wasnt lying-it was making a good impression, and that was what mattered. It mattered especially at the hospital-you had to make sure they liked you, so you got better care and didnt wait so long. We were a family of "lower socioeconomic status" and "non-English speaking background," and the most important thing was to nod and say "Yes, doctor" no matter how mystified you were-and no matter how far fetched the advice was in terms of our "social context." "Getting plenty of rest?" "Yes, doctor."

A sample page from the BMJ patient issue

I was a child in the 1960s. In the 1980s, when I became a health consumer advocate, at first I jumped into the active, rights driven approach so clearly described by several writers in this issue. But there was always disquiet for me. Jadad et al provide a prescription for how to mobilise medical resources to serve your or your familys interests.¹ Articulate people on the same social plane as their doctors, the very experienced, and the "worried well"-some of them can act like that. However, as Sweet points out, its not easy to be assertive at the doctors.² When her grandmother was sick, she was "not herself." When youre ill or injured, thats often the case, isnt it?

Is "the demanding patient" model realistic, and is it the best we can do? It worries me that this trend is deepening inequities in health care, as the better equipped patients corner more and more of their doctors time. Yet, they may be the very people who could get their questions answered in other ways, while the people who need to rely most on the doctor continue to act like Sweets grandmother.²

I agree with much of what Jadad et al say. But who would dare to commandeer doctors time with phone calls outside of consultations and who uses emails like that? Who will be left sitting and waiting, with little time left for them, while others are getting all their questions answered, and getting double medical advice for each decision? Whether you look at it from the point of view of the have nots, the timid, or an overburdened practitioner, my fear is that some of this might not be fair.

In 1995 I was writing a guide with my consumer group on improving communication in maternity care.³ We had been advocating that people write lists of questions. But my personal experience finally overcame the rights rhetoric. Would walking into the clinic clutching a list of questions make the doctors heart sink-"Oh no, shes one of those? I looked for evidence about what doctors really thought of patients wielding lists (not just the doctors who agree to participate in trials on patients asking questions). At that time, up there with the aggressive person and the ever unpopular obese patient, for a large proportion of doctors was the patient who took up too much time and asked too many questions.⁴

Ive revisited the literature in more depth while writing this piece, and even leaving aside the large body of work on stigma in relation to mental health or AIDS, its clear that not being liked by doctors and nurses affects your health care.¹³ The patient bringing in information from the internet has now joined the ranks of patients who are commonly disliked.¹⁴ And I discovered that my mother was right: patients who dont underplay their pain are not very popular.^15-18 Obviously, this has to change. But we need to consider the question of how to be a "good patient" in the context of what it will do to the dynamics of the doctor-patient encounter. Doctors talk more to the patients they identify with and like.⁵ A lack of rapport has been identified as one of the major reasons that people from lower socioeconomic groups or of a different race to their doctor have worse health outcomes.⁵ We need to be concentrating on ways to get doctors and patients understanding and trusting each other more.

A different look for the special issue

Jadad et al want doctors to get to like assertive patients and welcome their deluge of emails. Gray wants "resourceful" patients,¹⁹ and the NHS wants "expert" ones.²⁰ Oprah Winfreys influential magazine wants consumers to be "vigilant" and "well armed,"²¹ and it applauds the "guerilla" patient²²-and the goal, most emphatically, "isnt about being voted most popular patient."²² One of the cornerstones of this "new kind of patient" or partnership approaches is encouraging a growth in health literacy, which is undoubtedly a huge part of the answer to fairer and better health care. But some of the approach is far too simplistic and looks fairly risky to me.

The reality for most patients is not that we want to be in control of decision making. Maybe we just dont want to feel like everything is out of our control.²³ Illness or injury can be frightening, especially when it affects our children. It raises challenges we need to face as adults, supported by adults we can trust, who can communicate with us without further undermining our confidence, and who understand the realities of peoples lives. An interaction between adults as respectful equals is characterised by courtesy and trust. However, as the 2002 Reith lecturer pointed out, some aspects of the rights culture "that we are relentlessly building for ourselves actually damages trust rather than supporting it."²⁴ By 2013, I hope we know how to cultivate more mutual, trusting relationships between doctors and all kinds of patients. Just how demanding can we get before we blow it for ourselves-not to mention take much more than our fair share?

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