Merrily’s Choice is a compelling story published in the Denver Post on Sunday, January 5 ( Under the Colorado End-of-Life Options Act, Merrily got to choose the day she'd die (denverpost.com)
) highlighting the perceived benefits of physician assisted suicide (PAS), commonly referred to by the euphemism, medical aid-in-dying (MAID). Merrily clearly had a loving family. It is easy to empathize with her family who thought that PAS was a good choice. However, the positive picture of PAS portrayed by Merrily’s granddaughter is both incomplete and misleading. It can have unintended consequences for those hearing her story.
Social libertarianism is highly regarded by many Coloradans. We dearly value personal liberty and frown on any attempts to limit those liberties. However, Coloradans have become so enthralled with the pursuit of personal liberty and independence that it seems we have forgotten our interdependence and the common good. Our laws are increasingly predicated on this notion of “rugged individualism”. They ignore the totality of our human nature which encompasses not only our individual self-expression but also our mutual dependence and vulnerability. They minimize the importance of human relationships and love. They reinforce the false notion that people with disabilities or sickness are less human and less valuable.
As Coloradans increasingly prioritize personal autonomy over other human values, we are turning our backs on the principle of solidarity. This has been highlighted recently by the refusal of some Coloradans to wear masks or follow social distancing guidelines in the face of the deadly coronavirus pandemic. PAS is another example. In the name of personal autonomy, PAS has become the ultimate abandonment of sick/elderly Coloradans by the physicians who have pledged to care for them and by the families who are called on to love and support them at the end of life. Beneath the veneer of “choice”, PAS often is the outcome of systematic dehumanization of the sick/disabled and inadvertent coercion.
Merrily was 98 years old and slowly losing her ability to perform activities of daily living. She had lost much of her independence and required assistance from home health aides to remain in her home. There is no mention of a terminal illness other than her advanced age. A Covid infection posed an immediate threat to her life and she was enrolled in a hospice program rather than pursue more aggressive medical interventions in a hospital or skilled nursing setting. None of this is controversial. Like most people her age, she was not afraid of the prospect of dying and, indeed, would welcome death. But Merrily did not die from Covid as she and her family expected. The family was “flummoxed” and Merrily “embarrassed”.
As a physician who has attended to hundreds of dying patients over the years, this is not an uncommon scenario. Families can be more disturbed that a loved one survives an anticipated lethal illness than dies during the illness. This is not lost on their sick family members. People who survive a lethal illness often feel embarrassed and believe that their survival poses an undue burden on their families. (They often don’t vocalize this fear.) Because dependency already carries such a stigma in Colorado, the sense of burden is further exacerbated. Studies in other states have demonstrated that the fear of being a burden on family is a primary reason for pursuing PAS. It appeared to be a significant factor in Merrily’s “choice”. Merrily did not have a typical terminal illness and her physicians likely felt that her “failure to thrive” was enough of an indication for PAS. Her children “had found a way” for her to die quickly. Advanced age was never cited as a reason for PAS during the Colorado debate over the End-of-Life Options Act and Merrily’s PAS illustrates how insidiously the “indications” for PAS evolve.
Caring for a family member who requires significant assistance certainly can be a burden, especially for those without time or financial resources. Thankfully, Colorado’s new family leave bill may reduce this burden. However, it is not enough. Colorado needs robust, free, out-patient/in-patient hospice programs. It needs to explore other models to care for the elderly and disabled. Paying family members to care for their loved ones in lieu of nursing home placement or “adult foster home care” are just two option being explored in other states. No Coloradan should be forced to make a “choice” for PAS because they feel a burden on their family or their community. How we take care of these most vulnerable members of our state will be how we are judged as a society – not how assiduously we can enshrine personal autonomy in our culture.
Merrily’s family had “quality” conversations in the two weeks between the prescription of the lethal cocktail and its ingestion. This is wonderful, but nothing unique to the PAS experience. I have attended to patients in hospice at the time of their deaths and personally witnessed incredibly moving conversations, reconciliations, and acts of love between my patients, their families, and friends. In fact, PAS may curtail this important time families have to spend with their love ones at the end of life.
My own father died at age 96 in 2018. He had a slow mental and physical functional decline over a period of years. Like Merrily, he was fiercely independent. He learned to accept help at home after a life-threatening fall and grew to love his home health aide. He did not dwell on his disability and the family did everything we could to make him feel honored and valued despite his limitations. My siblings and I rotated visits with him and relished “field trips”, remembering family events and reviewing old photographs. We will always cherish this time together. Also like Merrily, my father developed an acute respiratory illness superimposed on his advanced age. Per his wishes, he was enrolled in hospice rather than pursue aggressive in-patient care. My father remained comfortable and was able to say good-bye virtually to those who could not travel to be with him. He died painlessly and peacefully with his family at his side as a harpist (provided by the hospice program) played a beautiful musical piece. PAS was not wanted or necessary. He had a “good death”. You rarely hear these stories.
Because Merrily chose suicide rather than a natural death, others may be impacted. It is no secret that Colorado is plagued by teen suicide. Embracing PAS sends the message to vulnerable teens (and others) that suicide is a rational, sometimes preferable, way to address physical or emotional pain. Autonomy is all that is important, even if that autonomy is the instrument of your death. Glorifying suicide is known to increase suicide in a community. This is commonly referred to as the Werther effect. Merrily and others who pursue PAS have no desire to impact vulnerable teens, but, sadly, this may be part of their legacy.
People of Colorado have voted to have access to PAS. This right needs to be accompanied by responsibilities. Coloradans need to hear more stories about “good deaths” made possible by quality hospice programs and not just rosy PAS stories like Merrily’s in the Post. We need to know that disability or even dependence does not detract from a person’s inherent dignity and value. We need to hear that we are not burdens on family or communities, no matter our physical/mental disabilities. Our families need to know that the state of Colorado will be there to assist them with private/public programs at the end of life so that we can nurture our relationships and not focus on the burdens. Finally, we need to know that suicide is not the only answer to difficult or challenging physical, existential or emotional pain.