Dr. Barak Gaster, an internist at the University of Washington School of Medicine, had spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to come up with a five-page document that he calls a dementia-specific advance directive.
In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness.
“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster told me. “At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses.”
As a community with a commitment to individual autonomy, I think the document will speak to many of our concerns, and perhaps most specifically the fear of wanting to reject additional treatment, but no longer having the capacity to communicate that. As the article elaborates:
For each stage of dementia, the patient can choose among four options. “Full efforts to prolong my life” and “comfort-oriented care only, focused on relieving suffering” represent two ends of the spectrum.
Patients can also opt for lifesaving treatments — except when their hearts stop or they can’t breathe on their own, precluding resuscitation or ventilators.
Or they can opt to receive care where they live but avoid hospitalization. “For someone who doesn’t understand what’s happening, going to an E.R. or being hospitalized can be really traumatic,” Dr. Gaster said. The experience can lead to delirium and other setbacks.
There is debate about whether there should be a separate dementia advance directive, but the idea of specific focus on the issue has great value. (I personally find the Maryland MOLST utterly incomprehensible, and do achieve that this document does within the MOLST would be a great feat of editing.).
In any event, our commitment to the value of the individual challenges us, in my opinion, to do what we can to make sure that those who wish have thought through these issues, and that our entire system support people in these choices, which certainly reflect only current law, and do not represent any change from that law.
There was at one point talk to Collington working to improve the MOLST. Maybe now is the time, reflecting the leadership goal in our strategic plan. Surely these issue have great implications for staffing, training, staff-resident relationships, and culture building.
Thanks, Collington, for being a place where these things are as much on the table as they are on our minds.