People should be able to die on their own terms
It is a sad fact of life that the people most in need of support and assistance are often the ones most likely to be deprived of them by the rules and traditions of governments that claim to have their interests at heart. I include in that category those in the last stages of a terminal illness, who — in their days of greatest pain, suffering and dependency — are often denied personal agency and peace of mind by laws that dictate, in effect, how and when they are “allowed” to die.
Fortunately, this is not the case for those of us in California and nine other states as well as Washington, D.C. In those jurisdictions, laws guarantee that people whose imminent-death prognosis of six months or less and cognitive capacity have been certified by two physicians and who have been counseled on the full range of end-of-life care options, including hospice and palliative care, have the option to decide if and when they will self-ingest medication to end their lives peacefully and painlessly, on their own terms — most likely surrounded by loved ones and/or spiritual advisors, in familiar settings, typically at home.
This entirely voluntary personal option, embodied in California's updated End of Life Option Act, is, sadly, in legal jeopardy. It is being challenged in a federal lawsuit filed in Los Angeles by two people with disabilities and four disability groups that have what I consider misguided but historically understandable wariness about anything that strikes them as resembling euthanasia.
The plaintiffs claim to represent people with disabilities. Let me make two things clear at the outset:
I am disabled, and they do not speak for me;
The legally sanctioned process of medical aid in dying they oppose has nothing whatsoever to do with euthanasia.
I have been disabled for several decades, and during that time I have come to understand intimately the needless obstacles placed in the way of people with disabilities. With that experience, I have become an advocate for the rights of others with disabilities. But the rights of personal autonomy and independent living for which I advocate are now, ironically, challenged by paternalistic organizations claiming to represent the interests of all people with disabilities.
My right to personal autonomy extends to my end-of-life care options. I don't want any individuals or organizations to dictate the timing and circumstances of my dying any more than I want the government to do so. Those organizations tend to claim justification from the Americans with Disabilities Act, but that act is designed to remove barriers to personal autonomy, not to impose new ones.
The guarantees outlined in California's End of Life Option Act include safeguards developed over two decades — with the assistance of specialists like palliative care doctors and medical ethicists — to eliminate the bogus specter of euthanasia and to assure that the precise timing of an imminent death is returned to the terminally ill themselves if they freely and knowledgeably request it.
Medical aid in dying is an option available to Californians who have been screened by physicians to ensure that they are acting with full understanding and of their own volition. The word euthanasia carries different connotations for different people, but in this context, it is generally understood to involve someone other than the patient administering life-ending medication. Whether voluntary or involuntary, euthanasia is illegal throughout the United States.
Polls in California and elsewhere in the country show overwhelming public support for medical aid in dying among those in both major political parties, in all demographic categories and geographic areas. One poll earlier this year showed 79% support nationally among people with disabilities. Yet the individuals and organizations challenging the law in California claim to be doing so in support of people with disabilities. That is nothing if not presumptuous. Yet the individuals and organizations challenging the law in California claim to be doing so in support of people with disabilities. That is nothing if not presumptuous.
I consider the denial of this palliative end-of-life care option to be cruel and unconscionable.
In our public policy-making, we owe it to the terminally ill to understand at least some of the unremitting pain, suffering and despair we force many of them to endure in jurisdictions that don't have the equivalent of our End of Life Option Act. A lot of them are unable to fully convey the torturous despair they are experiencing.
It's a myth that painkillers will magically alleviate all of their struggles. Traditionally, if they were lucky, they might have been medicated into a stupor. Most people would consider that a nightmare ending when there is no longer any hope of recovery.
I warmly recall the more autonomous model of a friend with a terminal diagnosis who openly took control of the timing of her own death, under the provisions of the End of Life Option Act. Before she reached the stage of her disease at which she would have been too incapacitated to self-administer medication, she sent her friends a message calmly outlining her intent, then gathered her family around her as she took advantage of the merciful process the current legal challenge would have deprived her of.
It is because of my conviction that terminally ill people deserve peaceful deaths and merciful autonomy that I have joined with two other people with disabilities and two doctors to petition to intervene in the lawsuit brought to dismantle the current law.
Legal action alone is insufficient. It is my hope that other Californians will join us in speaking out in support of loved ones who are or inevitably will be living out the final and most difficult weeks of their lives. The greatest gift we can give them is to honor their desire to die on their own terms and timelines.