Map of life expectancy at birth from Global Education Project.

Thursday, August 11, 2011

Patient Empowerment?

Kathy provides a link to an article about exactly the problem I'm immersed in right now. In fact I'm in the middle or two papers that wrestle with it. To plagiarize myself:

Until the mid 20th Century, the generally accepted physician-patient relationship in the West was "benevolent paternalism."(Katz, 1984; Parsons, 1951) The patient's role was to trust and to follow "doctor's orders." The “patient centered” care movement began to transform the paradigm in the 1970s. Lipkin et al in 1984 defined it as treating the patient “as a unique human being with his [sic] own story to tell.”(Lipkin, Quill, & Napodano, 1984) In accordance with this normative shift, the prevailing term for patients failing to take medication as prescribed, “non-compliance,” was seen as presuming a duty of obedience. Accordingly it was replaced by “non-adherence,” seen as having a less paternalistic implication. However, the terms were essentially used synonymously. (Bissonnette, 2008)

Increased interest in models called shared decision making(Makoul & Clayman, 2006) or concordance (O'Connor et al., 1999) since the late 1990s represents an effort to truly redefine the goal as agreement between physicians and patients about whether, when, and how medicines are to be taken, via discussion that includes and respects the beliefs and wishes of the patient (Marinker & Shaw, 2003). In their discussion of the concept, Cushing and Metcalfe (2007) emphasize the importance of two-way communication for concordance to be achieved: “The challenge here is for the professional to delve beneath the surface of…deference to ensure that important issues which might affect adherence are not being ignored” (Cushing & Metcalfe, 2007, p. 1049).

In the concordance model the patient knows his or her views are respected and any subsequent difficulties the patient has with treatment can be discussed. This prevents the patient from being in the uncomfortable position of either telling the doctor that he or she has not followed the advice or, alternatively, of lying. Cushing and Metcalfe conclude, however, that changes in the patient provider dynamic have tended to be superficial and have failed to create real partnership. Segal (Segal, 2007)criticizes the concept on fundamental grounds: that “concordance in fact harbors an ideology of compliance,” arguing that its proponents have justified it as a more effective means of gaining patients’ assent to providers’ wishes.

The fact is that despite all this blather about patient-centeredness and shared decision making, empirically, we see no real change in the way physicians and patients discuss treatment options. Pretty much, the doctor still says "Here's what you need to do," and the person says okay. Half the time, they go home and don't do it, but that hasn't changed either. The one place where we do seem to see more overt conflict is in the example in the linked story, end of life decisions.

The fundamental situation is that the reason we go to doctors is because they are experts. If we knew as much or more about how to treat our health problems as they do, or thought we did, what would we be doing there, except maybe to get a hint or a second opinion, but not one as good as our own? "Patient empowerment" means turning to quackery and having a guy pour ghee up your nose or stick needles in your (non-existent) meridians more than it means deciding whether to take an antibiotic, or a statin, or undergo cardiac revascularization.

I'm all for freedom and equality and autonomy, but knowledge and expertise are unequally distributed. By the way it's pretty much the same with my auto mechanic, except that they tend to have a less stringent ethical culture. How to truly empower people with the knowledge and wisdom to be genuine participants in their medical care is much more difficult than most people seem to assume.


roger said...

the experts are sometimes wrong, and they don't like the patients to point that out. i applaud your rant on quackery, but maybe you give the docs too much of a pass on being up to date on medical info.

kathy a. said...

i've seen this played out all sorts of ways. roger's got a point on docs not being up to date all the time -- i bet most docs would even admit to that, anonymously.

let me offer two anecdotes, because i think they offer examples of the extremes, in cases where a person is going to die. these are both true, and happened with people i loved.

exhibit A: the oncologist heading a team has tried everything -- i mean, everything -- and the brain cancer slowed, but it was back and spreading in this child. the doc set up a team meeting with the family, started with brain scans showing the spread, laid out how this would go, asked the family to decide about comfort measures, and to know that emergency measures (CPR) and more wild attempts to slow the cancer would only bring pain. this was gently done, a group discussion with nurses and psychologists and even friends, and a good plan was made.

exhibit B: my dad knew his metastatic skin cancer was incurable, he knew he was in the terminal stage, but family pressure [from one adult kid] led him to choose one experimental chemo after another. the last one -- his oncologist had no more to offer -- caused respiratory failure, and in the panic the ER did not realize there was a DNR order, and then he was on a respirator. my dad himself decided to take himself off the machine, but it was not the gentle ending he expected. and he died in ICU. and his fucking oncologist did not bother to show for a scheduled appointment with family, having evidently heard that dad was in his final coma. my dad's primary care physician came, with his wife, to comfort us.

kathy a. said...

i think, cervantes, that you are more concerned with the more usual problem in less urgent situations, where the patient doesn't want to be judged and the doc's not willing/able to get a little past that -- a ships passing in the night kind of problem, where actually communicating would be better, but there may be problems on either side.

hi, i'm kathy, and i've made my compliance look better than it is with doctors. and dentists.

but i'll tell you -- there is nothing that pisses me off more as a medical consumer than a doctor who eyeballs me, decides i'm stupid, and orders me what to do.

my word verification is "fired."

Anonymous said...

I dislike homeopathic medicine as a concept, and the promotion of it by e.g. Prince Charles among others -- but -- I think - a big asset to the belief of homeopathic pratitioners is -- "placebo effect" - and also some health situations just getting better by themselves.

There have been report of a (few) cancer cases where the person prepared to die, then got well for some strange reason, unknown ... --and had to deal with friends and relatives who expected him/her to die ...

It might be an interesting study, of how many people got miraculously cured at Lourdes, and what the diseases were? No cases of regrowth of limbs, fingers, etc. alas -