Kudos to Barak Gaster, a general
internist at the University of Washington, who has developed a
dementia-specific advance directive. In this document, he starts out by explaining what dementia is and why
patients and families might not want every possible medical treatment throughout
the course of this long illness. Then he simply and clearly characterizes each
of the three main stages of dementia: mild, moderate, and severe (or early,
mid-stage, and late) and asks what the goal of care would be in each instance.
I like the framework because it's basically what I have used for the past twenty years in articles and books. Gaster uses the same formulation that I propose—prolonging life,
maximizing comfort, and something in between that is related to maintaining
function and dignity—but adds one more option, life prolonging therapy minus
attempted CPR. That’s it. No long list of potential treatments, ranging from
ventilators to iv’s as with typical instructional directives (or, indeed, with
the POLST, which is an instructional directive turned into a medical order). No
complicated list of symptoms for each of the three stages of dementia, a list that
leaves people reeling and uncertain about just what stage a given person is
actually in.
Here are the parts of the document:
1. What
is dementia? Three short paragraphs indicating that Alzheimer’s disease and
other dementias are progressive, ultimately fatal diseases. Indicates average
time from onset to death (says 8 years, though some of the data I’ve seen
indicate 5-7 is more accurate). Highlights features of last stage.
2. Why
is it important to express your wishes? Emphasizes that patients lose capacity
and families benefit from receiving guidance.
3. What
kind of guidance can you give? Explains that tests and procedures are more
difficult to tolerate as dementia progresses. Also emphasizes that many people
would not want life-prolongation as their thinking and ability to derive
meaning from life deteriorate.
4. Stages
of dementia:
Stage
I (mild): lose ability to remember recent events;
routine tasks become
difficult (ie cooking); other tasks can
be more dangerous (ie driving).
Stage
II (moderate): lose ability to have conversations and
to understand
what is going on around them. Require full
time assistance with dressing (I
would quibble over this one;
people do need some help with their “activities of
daily
living,” one of which is dressing, but I don’t think singling out
dressing and saying “full time assistance” is needed is quite
accurate.
Stage
III (severe): no longer able to recognize family, may become angry and agitated
(one caveat here: agitation often starts in moderate dementia); need round the
clock help with all daily activities.
Even the description of the goals of care are well done:
there is some explanation of why a person might choose a particular goal. For
example, if the goal of care is “to only receive care in the place where I am
living,” the text clarifies that the reason for not wanting to go to an
emergency room or be hospitalized is to avoid the “possible risks and trauma
that can come from being in the hospital.”
For people who find images helpful to elucidate the
words, I suggest viewing the videos from acpdecisions.org addressing dementia.
Angelo Volandes, president of ACPdecisions, has filmed a series of
dementia-related videos based on the script I offered: one addresses the stages
of dementia, and another details the goals of care across the spectrum of the
disease (suggesting that many people favor different goals as the illness
becomes more advanced).
The proposed new "advance directive for dementia" is a
valuable contribution to the tools available to help individuals plan for the future. I hope it will be used widely--and that individuals who are physically frail will also engage in a similar type of advance care planning. It's high time we recognized that thinking about the future is not just for those who have no future.
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