op-ed from The Seattle Times, November 17th, 2017
by Robert A. Free
After moving my sister to a memory care home in Oregon following her Alzheimer’s diagnosis, I began exploring legal options of pursuing death with dignity if I am confronted with dementia. I don’t know that my sister would have wanted to end her life early in order to escape the ravages of serious dementia, but I want to exercise choice if I receive that diagnosis. I do not want my family to experience the pain that we experience as we watch my sister become a different person, slowly relinquishing her quality of life and sinking into unresponsiveness.
Washington’s Death with Dignity Act — and similar laws in Oregon, California, Vermont and Colorado — provide no relief for people with Alzheimer’s or other forms of dementia. The laws require that a person be mentally competent to choose a planned death, as well as receive a prognosis of six months or less to live.
The only legal option when faced with serious dementia is “Voluntarily Stopping Eating and Drinking,” or “VSED.” This option is available to persons in the very early stages of dementia when they still have sufficient cognitive ability to choose between life and death and enough fortitude to see the VSED process through. There is no requirement for a prognosis of six months or less to live.
There is another stage of progressive dementia toward the end of a person’s life during which an earlier and natural death is possible if certain documents are prepared before the person sinks into dementia. Almost all dementia patients eventually reach an unresponsive stage when nourishment becomes unimportant to them. Believing they have an absolute duty to provide nourishment, caretakers frequently cajole people to eat and drink beyond the time a person is interested in doing so.
Caregivers sometimes interpret a person’s open mouth when spoon fed as a desire to eat when medical practitioners tell us that opening the mouth when touched with a spoon is a reflex rather than an expression of a desire for food. Demented persons have the right to decline forced feeding, which is tantamount to an assault on the body.
End of Life Washington (formerly Compassion & Choices Washington) is an organization providing support for persons choosing end-of-life options. We recently drafted “Instructions for Oral Feeding and Drinking,” similar to an advance directive, a document which expresses a person’s decision about when to be offered food and fluids during late-stage dementia.
The instructions list several reactions — such as turning one’s head away, spitting out food, or appearing indifferent to being fed — which should be interpreted by caregivers as the desire to stop eating and drinking, thereby allowing the natural dying process to proceed. In addition to signing these instructions, it is vital to appoint a surrogate health-care decision-maker, pursuant to a power of attorney document, to make health-care decisions if dementia develops.
The appointed surrogate can make sure caregivers honor the demented person’s wishes to be allowed to stop eating and drinking if the indicators listed above are present.
VSED and these instructions are legal and certainly morally acceptable ways of helping people die with dignity if Alzheimer’s or other serious dementia strikes. Both can provide some solace to people who contract this tragic disease.
Robert A. Free is a retired attorney and board member and past president of End of Life Washington.