April 30, 2006
The "Duh!" News: Quality of Life is OK, Say "Patients"
"Peoples' viewpoints do change over time," said Elizabeth Chaitin, the director of medical ethics/palliative care services at the University of Pittsburgh Medical Center. "As people age and become disabled, they are more willing to accept what we might see as a bad quality of life -- they don't see it as a bad quality of life."
That's the quote from a Forbes article out last week -- but lots of news media reported the findings, because they were, gee whiz, so AMAZING to most folks.
Well, duh! This is what disability activists and scholars have been saying forever.
Everything in the story is of course writtten in highly medicalized language -- "patients" and "treatment" and so on -- but if you slog your way through the language you find out that
Faced with declining health due to a chronic illness, many patients become more willing to accept treatments that could leave them functionally disabled, a new study finds.In fact, patients may be more willing to accept these treatments than the general public or doctors believe -- even when therapies reduce their quality of life. . .
Here we come 'round again to the simple truth that people who HAVE the "conditions" -- let's call 'em disabilities -- feel their "quality of life" is better than medical folks (mainly doctors) believe it is. This has cropped up before in discussions of assisted suicide.
But will medical professionals ever accept the simple truth?
Some of them, in a kind of throwing-up-their-hands resignation, seem to see the study as indication that "advance directives" are of little use.
The article, the link to which was sent around to various folks by a reader, is from Archives of Internal Medicine (not online for free, but the article citation is "Prospective Study of Health Status Preferences and Changes in Preferences Over Time in Older Adults," by bTerri R. Fried; Amy L. Byers; William T. Gallo; Peter H. Van Ness; Virginia R. Towle; John R. O'Leary; Joel A. Dubin (Arch Intern Med 2006 166: 890-895)).
It has this in its conclusion:
The results of this study pose a serious challenge to the instructional form of advance care planning. The main purpose of these instructions is to allow patients to express their preferences for care in the case of future circumstances in which they are unable to speak for themselves. This presupposes that patients' projections of the treatment they want for themselves in some future state accurately reflect how they would feel in that state. However, the findings of this study illustrate that some patients cannot accurately predict their future valuations. This limitation is well recognized in certain fields, such as psychology and decision making, but it has not been a prominent part of considerations about advance care planning.
Posted on April 30, 2006