Caring for an Elderly Relative who Wants to Die

I was disturbed but not really surprised when I read the October 21, 2020 New England Journal of Medicine article by Scott D. Halpern, M.D, Ph.D., titled “Learning about End-of-Life Care from Grandpa”.

Dr. Halpern, a palliative care doctor and ethicist at the University of Pennsylvania, wrote about his elderly grandfather who had been widowed for the third time and wrote “My life was over too, only existence remained,” in a memoir for his family.

As Dr. Halpern writes, “It was downhill from there” as his grandfather coped with challenges like blindness, deafness and arthritis.

Family members offered to care for him but the grandfather chose to go into an assisted living facility where family members could visit him frequently. But then, Covid 19 visitations cut him off entirely from the outside world.

Eventually, the grandfather was allowed to see relatives one at a time outdoors at the facility.

Nearing his 103rd birthday, the grandfather started asking Dr. Halpern about “any plausible option to hasten death”.

New Jersey had recently approved physician-assisted suicide, but Dr. Halpern was “ambivalent” about that option. In addition, his grandfather did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness”.

Alarmingly, Dr. Halpern found that the medical code for this diagnosis called “adult failure to thrive” was being used not only used to access hospice but also to access physician-assisted suicide in some states.

Unable to find a New Jersey doctor willing to use physician-assisted suicide on his grandfather anyway, Dr. Halpern offered his grandfather the option of VSED (voluntarily stopping of eating and drinking) to hasten or cause death that the pro-assisted suicide group Compassion and Choices touts as “natural” and legal in all states.

THE TRUTH ABOUT VSED

Dr. Halpern wrote that his grandfather had trouble refusing food and water on his own. He started and stopped the process a few times.

Dr. Halpern was not surprised, writing that:

“ For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.” (Emphasis added)

Finally, Dr. Halpern’ write that his grandfather said “I just want it over with. Scott, do whatever you need to do.”

Dr. Halpern writes that he consulted his hospice team and began treating his grandfather’s thirst “as I treat other forms of discomfort — with morphine and lorazepam” (Emphasis added)

Even then, it took 12 long days for his grandfather to finally die.

The lessons that Dr. Halpern says he finally learned were that:

“despite many problems with physician-assisted dying, it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

And

stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)

CONCLUSION

Dr. Halpern obviously loved his grandfather and tried to meet his grandfather’s emotional and physical needs before telling him about the VSED option and eventually adding terminal sedation. And it seems that the imposed isolation because of potential Covid 19 infection was especially devastating for his grandfather.

But his justification for physician-assisted suicide as “the most holistic relief possible for people who are not immediately dying, but rather are done living” is chilling.

Unfortunately, that is an attitude seen all to often in medical professionals that has led to the expansion of some assisted suicide laws from terminal illness to non-terminal conditions like “completed life” and disabilities.

Both personally and professionally as a nurse, I know how difficult it can be on families when caring for a family member-especially an older relative-who says he or she wants to die.

But I also know that while we all can have sympathy for someone who says they want to die, the word “no” can be a powerful and loving response. The real answer is to help make living as good and meaningful as possible until death.

For example, I became the only caregiver when my elderly aunt developed diabetes and late-stage pancreatic cancer in 2000.

I went to doctor visits with her and went over the options with her. My aunt rejected chemo and radiation that had only a small chance of even slowing the cancer. She also refused hospice.

I offered to care for her in my home with my 15 year old daughter who also wanted to help. However my aunt felt it would cramp my daughter’s lifestyle so she decided to stay in her own home until she died.

So I helped her at home and purchased my first cell phone so that she could contact me at anytime. At that time, I was a single parent and worked full time nights in an ICU.

However, one day my aunt asked me about stopping her insulin to die faster. I told her how that could put her at risk for a heart attack or stroke from high blood sugar with no one there to help.

So she changed her mind and then even began opening up about her condition with others. She was stunned when people told her how inspiring she was and offered to help her in any way.

My aunt became happier than I had ever seen her.

Eventually, my aunt did accept hospice care at a facility she knew. I visited and called often. My aunt was physically comfortable and alert.

One day when my daughter and I went to visit her, we found that she had just died quietly in her sleep. The nurses had just stepped out to call me.

My daughter later wrote a beautiful essay about her first experience with death for her high school and received an A+. Her essay was later published on a nursing website.

In the end, causing or hastening death does not really solve anything but rather can be seen as an abandonment of the suffering person and a destroyer of the necessary trust we all must have in the ethics of our healthcare system.

We must never discriminate when it comes to helping anyone contemplating suicide.

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3 Tips for Safeguarding Your Loved One in a Nursing Home

I have had many relatives and friends who lived in nursing homes and, especially as a nurse, I am always saddened by how few of the other residents had any visitors, even family members. I have even heard relatives say they would just prefer to remember their relative “the way they were”.

This is not only tragic for the family member’s or friend’s psychological well-being but also potentially for their safety. Nursing home residents without visitors are at greater risk of neglect or even abuse. With sometimes inadequate staffing and/or high nurse and aide turnover, it is important that people in a nursing home have someone who knows them to look out for them.

Here are 3 tips that can help safeguard a friend or relative:

  1.  Get to know the staff and tell them about your friend or relative, especially likes or dislikes. Visit at different times or days in order to know the staff and when it is most convenient to talk with them.
  1. Notice “red flags” like poor personal hygiene, unexplained injuries, weight loss, emotional changes, environmental hazards etc. and know who to contact if you see a problem.
  1. Especially if you are have health care power of attorney for your relative or friend, ask about care conferences so that you can attend them. Such conferences usually cover how the resident is doing in terms of activity, possible pain, eating, mobility, etc. It is also crucial to know what medications have been ordered and given, especially the PRN (as needed) ones. For example, you may notice a change such as sleepiness or fatigue that can be helped with a medication change.

CONCLUSION

By 2020, it is projected that the global population of human beings who are 65 and older will surpass those under 5 for the first time in human history. At the same time, families have fewer children, older adults are more likely to have never married or to be divorced and adult children often live far from their parents. This makes it harder for many older people who prefer to live independently in their own homes indefinitely without help.

According to the CDC, 1.4 million people are nursing home residents in the US and, as I wrote in last week’s blog “‘Rational’ Suicide and the ‘Elderly'”, those residents really benefit from visitors as do all of us who volunteer to help the elderly!