Is your Facility Prepared for Advance Directives for Stopping Eating and Drinking?
At the March 2019 annual AMDA meeting, Dr. Karl Steinberg (our incoming AMDA VP) and I were part of a panel debating whether the United States should adopt the Dutch policy of legalizing Advance Directives for Euthanasia. In 2014, 4.4% of deaths in the Netherlands were by euthanasia and 20% were by palliative sedation. Dr. Cees Hertogh, a Dutch physician and bioethicist, gave a wonderful presentation on the history of euthanasia in the Netherlands and the criteria for euthanasia, which have been modified to include euthanasia by advance directive (AD) for persons with dementia. In contrast, the 20-year experience of Oregon with the Death with Dignity Act (reported in the September 2017 Annals of Internal Medicine) had 0.2% of their deaths via medical aid in dying. California has had a similar frequency who died by lethal ingestion via the End of Life Option Act.
While what has happened in the Netherlands is not legal here (for the purposes of the presentation, while not necessarily reflecting our personal opinions), Karl provided arguments in favor of aid-in-dying for nursing home residents in persons with dementia, and I in opposition during this debate, the movement for patients choosing their reasons for assisted dying and the timing of their death has become an important issue for some in our country.
For this reason, I was pleased that the AMDA Ethics committee developed a White Paper on the ethics of Advance Directives for Stopping Eating and Drinking (SED) in the ALF and PALTC Setting. This paper was discussed and approved at the HOD (House of Delegates). Please follow this link (https://paltc.org/node/5698) to access this paper (as well as the many other approved white papers) and to understand why AMDA opposes SED by AD.
This is an excellent paper. I am immensely relieved to know that CALTCM has taken the position against SED by AD that I feel is the only right solution. Margo for sure, and possibly Sheri, could still answer the question: do you want to keep living? As such, we would have no right to deny their autonomy, any more than we would have the right to deny autonomy to someone without dementia. One point that is possibly not emphasized clearly enough is that these people are still people, and have the same rights as anyone else. So the fact that there is an AD requesting that these people be starved to death is completely irrelevant. The “then-person” has literally and absolutely no rights over the “now-person.” And then, if the “now-person” truly has no capacity, then they are our most vulnerable charges, and we cannot allow our medical system to provide for their victimization. If we allow some people with dementia to be forcibly starved, but not others, then we are the arbiters of whose life is worth defending and whose is not. Better to do what is most clearly right, and disallow across the board this proposed violation of human rights and medical ethics as it has always been known. Our job is not to try to eliminate tragedy and sadness from the face of the earth (which I believe is the motivation of people with these ADs), but to care for and protect our patients. We should stand up and say no to the forces demanding that we violate our oath and provide death instead of care.