During my life I’ve had an opportunity to view end of life, disability, and general health care from multiple angles. I’ve engaged it from a public policy perspective as the former health committee chairman of the California State Conference of the NAACP, as a young adult
when a family member was given a terminal diagnosis, and from the painful yet inspiring viewpoint of having a severely disabled twin brother who suffered with cerebral palsy.
In recent months an organization formerly known as the Hemlock Society, now called Compassion & Choices, has led the charge for the right to assisted suicide. To raise the profile of their advocacy, they have highlighted the sad and unfortunate death by (legally assisted) suicide of a young lady named Brittany Maynard. Earlier this year Ms. Maynard was diagnosed with terminal brain cancer at just 29 years of age, and faced with this devastating news, she terminated her life. However, suicide was not the only option for her to avoid a painful death. Palliative and hospice care, which address physical pain as well as the emotional and spiritual needs of the terminally ill, is readily available to comfort persons at the end of life.
While Ms. Maynard’s death in Oregon has been heralded as an example of why assisted suicide should be legalized in California, there’s also a darker side to end of life care. It’s no secret that America’s health care system is profit-oriented, and introducing the low-cost alternative of assisted suicide could have devastating effects.
Proponents uphold Oregon’s assisted suicide law as a model to be followed, but they ignore evidence from cancer patients such as Barbara Wagner who had her request for chemotherapy medication denied. Although Oregon Health Plan was unwilling to approve the $4,000-a-month drug, they offered to cover the one-time $100 expense for life-ending medication. Unfortunately, she is not the exception, as there are many other noncelebrated cases facing these challenges on a daily basis.
While hospitalized on life support, my low-income uncle was given a terminal diagnosis. There was extreme pressure applied to my mother to end her brother’s life, as they emphasized his inability to care for himself, the cost to maintain care, and the unlikelihood of living a dignified life should he survive. He did survive, for another 12 years in a wheelchair and I’m sure he would say despite needing occasional assistance, he lived a very dignified life.
Numerous polls and studies have shown the overriding concern and fear of people who support assisted suicide is the thought of living with a disability, and experiencing an undignified life. This is a troubling outlook, as it diminishes the value of those who live full, robust lives with many of the disabilities cited as reasons to enact assisted suicide laws.
My twin’s life was one featuring a constant movement of life expectancy. Although Kevin required assistance and care, he enriched the lives of the persons he touched despite his disability. While caring for him and others with similar ailments is not always convenient, discarding lives which become inconvenient is not a display of compassion, but one of selfish cruelty.
It is important we separate the acts of removing life support from nonresponsive patients and that of actively terminating lives, as they are not the same thing. As a society we have long rallied together to provide support and encouragement for those seeking to kill themselves. Just as we would with any person wishing to commit suicide, we must embrace those facing end of life challenges with that same love and compassion, and help them live life fully until the end.
Barnes, a resident of Rancho Bernardo, is a former executive committee member of the California State Conference of the NAACP. He is an operations and management consultant and active in organizations supporting those living with disabilities.
Source: UT San Diego