I respect that others may disagree but how and when and why we end life when it involves medical issues needs to be on the table.
This is part of an ongoing series about our family’s experience with dementia. There is no order to it, just observations, reflections and, I hope, some guidance for others on this journey or who may someday begin it. It is not intended as any sort of financial, medical or psychiatric advice. Just one family’s experience…
A WARNING…..This post may not be for everyone.
My wife has said she wants to die. Does she mean it, or is it just a feeling in the moment? She’s said it more than once. I have known her for more than 57 years I feel like she means it. She always has been practical. She is going downhill toward the ultimate destination for those with dementia.
She knows it and she knows she can’t stop it. Earlier on in our journey (because dementia is always “our”) she talked about her money worries. She always managed our personal finances and did a wonderful job of it. That’s why we ended up with the long-term care insurance that makes her care in a memory unit – at north of $10,000 a month – possible. The policy covers 75 percent. In an earlier post I shared that 80 percent of all Americans older than 65 will need some form of long-term care and only 20 percent will be able to afford it. That is scary and, to me at least, immoral in a supposedly civilized nation.
Connie has worried about what would happen to me if she lived on and on, past the point of long-term care insurance. She also dreads the possibilities of years spent in some NeverNeverland where she doesn’t know anyone, even herself.
So, we’ve talked. Both of us agree that if assisted medical suicide were available, we’d take advantage of it. But, for us that option does not exist.
FIRST, WE LIVE in Pennsylvania and assisted suicide is not legal here. A bill allowing it was presented in 2024 but was not enacted. In the US medically assisted suicide is allowed to some degree in California, Colorado, District of Columbia, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont and Washington. While a court ruling in Oregon said out-of-staters can come to the state for assisted medical suicide, it would not apply in our case.
To date, no states allow assisted suicide for dementia patients, primarily because there is a clause in each law stating that the patient must be mentally competent at the time of the action. In other words, if we lived in a state where it is allowed, and had we put Connie’s desires in our Advanced Directives when she was competent, if she was not competent at the time of the actual decision, it would not apply.
So, while people suffering terminal physical ailments can, in some states and countries, opt for assisted suicide, dementia patients for the most part cannot.
The issue of assisted suicide is a thorny one. Dr. Josh Bloom, Ph.D., director of chemical and pharmaceutical science for the American Council on Science and Health, noted in a 2018 article that the discussion brings in personal beliefs, religion, human rights, end-of-life care, the law and the very idea of euthanasia for humans.
In our case, our values and beliefs allow for a choice in how we end our lives. I respect you may come to a different conclusion. But the issue is not one of how we personally feel but what the law of the land should be. Should the option be available for those who believe in it?
It’s important to note that everywhere this is an option, the law is strict. It requires that physicians confirm the patient most likely has less than six months to live. In some cases more than one physician’s opinion is required. It requires the patient be of sound mind. That rules out, in the United States, a dementia patient even if they are physically dying.
We could add dementia simply including language requiring evaluations by qualified medical specialists. But, we haven’t.
One argument against both physical and mental options for ending life is that people would give up too soon, that medical intervention that could have extended their lives would be pre-empted. But, in areas where assisted suicide is allowed, there has not been a rush to end lives. In the Netherlands roughly five percent of all annual deaths come from medically assisted suicide. Oregon enacted its law in 1997 and around 4,500 have chosen that route.
THERE WAS A time when I could not imagine any decision more difficult than deciding to die or participating in a decision to allow someone I love dearly die. Not today. The past two years dealing with dementia, not just with Connie but with all the people I see daily in the memory care unit, has changed my mind.
That experience has not made it easy to support medically assisted suicide for dementia patients but it has made it possible for me to do it. It also is made easier because I believe my wife, with all my heart and soul, when she tells me she does not want to complete her journey into oblivion. She does not want her body to live on when the person she has been no longer occupies it.
Before I go, let me introduce a brutal reality. Money. Connie has worried about it. The fact is that extending life for those who, in some many ways, are no longer alive, is destroying families. It is consigning spouses to marginal quality of life; it is denying children educations; it is draining valuable resources. Our health care system, our view of what we owe each other in a civilized society, lags other nations.
In times past we did not have medical miracles. People died. Today we can extend life and where that life can continue to be rewarding, I am all for medical miracles. But, when we extend life beyond its ability to be experienced, beyond the wishes of those who are living it, then it no longer is a miracle. It is a tragedy.
I’ll be signing petitions to allow for medically assisted suicide, including for dementia patients. I respect you may make a different choice.
Rich Heiland has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. He has worked as a consultant doing public speaking and training business specializing in customer service, general management, leadership and staff development. He and his wife, Connie, live in West Chester, PA. He can be reached at [email protected].