NRPLUS MEMBER ARTICLE W hen someone you love is dying slow and hard of a disease like ALS, you find lots of things to be thankful for: the closeness of family and friends, the gentle respiratory technician who takes panicked phone calls at any hour of the night, all the devices that smart people have invented to make the life of a quadriplegic more bearable.
In fact, during the last few months of my father’s life, my family became quite expert at counting our blessings. One of these blessings is that our home state of Florida is not an assisted-suicide state. “Thank God that kind of thing isn’t legal here,” my mother said on more than one occasion. “I would hate for your father to think he should end his life to save us from trouble and pain.”
With this she put her finger on one of the great flaws in the argument to legalize assisted suicide. Its eager champions promote it as free choice, a way for dying patients to exercise self-determination. The truth, as we all came to realize in caring for my father, is quite the opposite.
While he was extraordinarily brave when it came to confronting his own suffering, he agonized over the toll his care was taking on us, and especially my elderly mother. As his disease advanced, caring for him became more and more exhausting, more and more expensive, and more and more complex. This and the pain of watching the steady advance of his paralysis was fearfully hard on us.
For patients like my father, the pressure to relieve family members of all this is overwhelming. They worry more about their loved ones than about themselves. In Oregon, where assisted suicide has been legal longest in the United States, the cases where patients reported feeling like a burden was tabulated to be as high as 45 percent in 2022.
My father was fortunate; he had a large and close-knit family to help and accompany him, and we had the means to hire home health aides when he eventually needed round-the-clock support. But too many disabled and terminally ill patients are what’s called “attendant deficient.” Promoting assisted suicide will no doubt only increase the pressure these patients feel to “choose” suicide simply because the needed social assistance and health-care options are unavailable. In fact, the more assisted suicide spreads (seven states are considering legalizing it at this time), the more society is disincentivized to provide these costly but needed services.
The “easy” and inexpensive default is to help the patient end his or her life — as relief to society, as relief to the patient’s family. Just last month, disability-rights advocates filed a lawsuit alleging that California’s End of Life Options Act has created a discriminatory system in which people with disabilities are steered toward suicide and away from the help and accommodations they need. I don’t doubt they have many examples of people being pushed toward suicide since the California law was enacted.
My father was diagnosed with A.L.S in January of 2019. At that time, doctors told him he had, at most, six months to live. You can imagine the shock of this news to a man who was hale and hearty, the patriarch (in the best and most loving sense) of an affectionate family. The doctors were, as is so often the case, wrong. He lived almost another three years, defying expectations. This is not uncommon, and it’s another example of the fallacies in the arguments for assisted suicide, which treat terminal prognoses as gospel.
If my father had acted, given his prognosis, to end his life in order to prevent his family’s suffering, as so many do in our nation’s assisted-suicide states, he would have missed so many joys and milestones. As his disease progressed, every expression of loving attention, however small — every kiss or caress —made him inordinately happy. Toward the end, he cried from gladness much more often than from fear or pain.
My father has been gone five months now.
Looking back, I continue to be thankful for his last years. In that time — in our family’s years of ALS — he gave us a tremendous example of courage and nobility in the face of overwhelming adversity. He brought out the very best in us. We all gave and gave of ourselves, finding reserves and abilities we didn’t know we had. Our hearts grew larger caring for him, and I don’t think they will shrink again.
Yes, I’m grateful that my father was never offered the “choice” to do away with himself. And that he was spared the awful pressure to save us from a time that, as it turns out, we will cherish in our memories all our lives.