By Carrie Handy
February 1, 2012
A story in the news last month described a mentally retarded child who was determined ineligible for a kidney transplant by Children’s Hospital in Philadelphia, allegedly because her quality of life was deemed by doctors to be not good enough to justify the procedure. The case garnered a public outcry, and the hospital has recently reconsidered its decision.
Such ethical debates concerning “quality of life” judgments by medical decision makers have become a familiar part of the medical landscape in the last decade. In this era of diminishing economic resources, juxtaposed with growing advances in medical technology, such discussions will no doubt become more commonplace.
Whom do you trust to decide whether your life is worthy to receive our society’s increasingly scarce medical resources? Proponents of assisted suicide will be the first to say that such decisions should be in the hands of the patients themselves. In fact, their primary focus is “choice”.
But imagine for a moment making health care “choices” in a climate where assisted suicide is legal. Will doctors be expected to present “prescription death” as an option to be considered for individuals with terminal illnesses? Merely suggesting such an option can constitute subtle pressure to a vulnerable person.
The elderly stand to lose if doctor-prescribed death gains acceptance. Providing adequate support for people at the end of life is going to be an increasingly pressing problem as the baby boom generation reaches old age. It is well documented that the elderly will soon far outnumber able-bodied caregivers. Do we really want to pass a law that will open the door to a coercive environment in which “choice” to die becomes “duty” to die?
My mother-in-law was diagnosed in July, 2010, with colon cancer, at age 79. Doctors removed an apple-sized tumor from her colon, and prescribed chemotherapy. Over the next few months, she courageously battled the cancer, only to learn in January of 2011 that it had spread to her pancreas. Her decline accelerated. Assisted by Hospice, and with support from her extended family, she was able to stay at home until her death in February 2011. She died peacefully, surrounded by the people she loved.
My mother-in-law was a wonderful, stoic, cheerful patient. Caring for her was a privilege, and we were all grateful for the opportunity to be with her and serve her in her last weeks. Still, to provide 24-hour care at home for an increasingly disabled patient strained our resources, since almost all of us who shared in the rotation also had other jobs and responsibilities. We gradually created a care-coverage schedule to make sure she was never left alone. Other friends and family members, as well as Hospice volunteers, stepped forward to help. In her last weeks, we hired paid caregivers to provide respite care a few hours a day.
This experience taught me a great deal about the deficiencies in palliative care services in Vermont. My mother-in-law was financially well-off. She had Medicare coverage and supplemental insurance as well as a supportive family living in the area. Hers was a “best case scenario” for someone facing serious illness. And yet, we as a family were unprepared for both the amount of care she needed in her last weeks, and the shortage of palliative care support. It was overwhelming at times.
The Hospice workers we encountered were dedicated, professional, caring people. But their availability was limited to just 1 or 2 hours, or less, out of 24, even at the very end. The reality was that it was up to us to provide care for her for the other 22-23 hours in the day, every day. If we chose to hire respite care, it cost between $25 and $37 per hour out of pocket.
I have to wonder what happens to people who do not have the kind of help and support that my mother-in-law did, nor the resources to hire outside help to fill in where insurance-supported health care falls short. Even for someone of means, to hire 24-hour care can deplete resources very quickly. My mother-in-law, who spent her life giving selflessly to others, bore her illness with great dignity, and accepted help with humility. Yet, I wonder, if “prescription death” had been offered to her as an acceptable option by those around her, would she have “chosen” suicide out of fear of being a burden to her loved ones?
In recent years, the Vermont legislature has passed bills aimed at improving and expanding access to palliative care services. It is clear from my family’s experience that we are far from achieving the admirable goals of these bills. Do we want to risk undercutting efforts to improve the quality and availability of palliative care in Vermont by legalizing prescription death? Data gathered in both the U.S. and the U.K. suggest that in places where physician assisted suicide is legal, palliative care suffers.
In the Netherlands, which legalized assisted suicide several decades ago, euthanasia is now both legal and commonplace, and considered by most to be an important part of “good” palliative care. I don’t believe this kind of “improvement” in palliative care is what we wish to seek here in Vermont.
Good law has little or no negative unintended consequences. The potential “side effects” of legalized prescription death should not be minimized. Even if some people are completely free of insurer or family pressures and believe their end of life experience would be enhanced by doctor-prescribed death availability, we should not be persuaded that such a law would affect only a few. Eventually, we may all be counted among the vulnerable
Last Acts, Means to a Better End: A Report on Dying in America Today (November 2002), www.rwjf.org/files/publications/other/meansbetterend.pdf, at 19, 23, 24, 25, 32, 36, 41, 42, 55
House of Lords, Session 1993-1994 Report of Select Committee on Medical Ethics 113 (1994).
Z. Zylicz, “Palliative Care and Euthanasia in the Netherlands: Observations of a Dutch Physician,” in K. Foley and H. Hendin, The Case Against Assisted Suicide: For the Right to End-of-Life Care (Johns Hopkins University Press 2002), 122-43 at 140-41, 142.