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
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.