Two of my six aunts died from Alzheimer disease (AD). They didn’t live nearby, so when I saw them every few months, the deterioration from the illness was evident. Both showed the same behavioral trends: some mild forgetfulness and repetitive questioning at first, then what seemed a prolonged period of incessant questions and bewilderment and anxiety over not understanding where they were or why they were there, who others were. Wandering outside at all hours, agitation and resistance to hygiene, eventually disappearing into a nonverbal, nonresponsive state.
It was painful to watch these formerly active, smart, and vibrant women decline in such a way. The most painful part was when they still understood that they were becoming confused and how frightened that made them.
Now there are alternatives available for those who don’t want to go down that road—but they are hard to come by, especially if you live in the United States.
People with dementia face particularly high hurdles.
A special feature in the March issue, “Medical Aid in Dying: What Every Nurse Needs to Know,” covers medical aid in dying and the nurse’s appropriate role in many end-of-life circumstances, including the ethically and logistically challenging situations of those with dementia who seek some agency over how they die before their conditions progress. Author Kaveri Roy describes the story of a family whose patriarch was diagnosed with AD at age 69. He had witnessed the death of his father from AD and was determined to die on his own terms.
As the article describes in detail, pursuing medical aid in dying is generally difficult in this country. This is even more so for patients with dementia like this one because the ability to independently make the final decision to die is a key criteria in most death with dignity laws.
“… US death with dignity laws limit aid in dying to terminally ill patients with a prognosis of six months or less; patients with illnesses that have less precise timelines face added challenges. By the time Mr.S’s disease reached an advance stage, he would likely have lost the ability to advocate for himself.”
Current laws also make it difficult for patients with or without dementia and their families to get the information and support they need—when the patient told a medical provider he didn’t want to live with AD, he was diagnosed with depression, which then made his pursuit of aid in dying all the more difficult. And his family couldn’t discuss his plans with health providers, as they might have had legal obligations to report this intention to die. In the end, Mr. S and his family had to travel to Switzerland to find his peaceful death.
What nurses need to know about death with dignity laws, ethics, and options.
Nurses may rightly be wary of going beyond the limits of their scope of practice in such matters. But nursing organizations do support nurses’ involvement in end-of-life decisions as part of nursing’s duty to provide patients with information they need to make health decisions. With this in mind, nurses will be on firmer footing about their appropriate roles in supporting patients and their families if they educate themselves on the relevant laws, ethics, and options. This article does just that.
(And listen to my podcast interview with the author for a fuller understanding of all that the family went through.)
