Below is the text of an article I wrote in support of aided dying, which first appeared in the Summer 2016 issue of Natural Transitions Magazine. As I make this post the Colorado End of Life Options Act is on my state’s ballot—a situation I’ve long awaited. This piece ranges wide and delves into aspects of support for aided dying that news ‘coverage’ never does.
The only aspect I’ve not included is how the question “shouldn’t we spend energy supporting [insert some worthy medical reform here] instead?” is in fact blaming the victims. Should anyone like to know how this is victim-blaming, pose a question and I’ll answer it in the comments area. — BW
I’d like to offer a reasoned essay on why I support physician-aided dying (in the United States, the provision of lethal substances by prescription that a dying person can consume, should he or she choose) but I’m not sure I can any longer. A year’s deep engagement with aided dying has changed my basic stance. I no longer believe as much as I used to that reasoning matters when it comes to support of or opposition to aided dying. I care that people opposed to aided dying hold heartfelt concerns, yet I find myself caring less about those concerns. I’ve come to see the issue simply. I support aided dying, think we ought to enact it nationwide, and that it ought to be more broadly available than current and proposed legislation allows. Aided dying ought not preclude a range of meaningful end-of-life reforms in the medical, social, and political spheres, nor should any such reforms preclude availability of aided dying.
My distrust of medical authority deepened while experiencing each of my parents’ terminal hospitalizations (in 2004 and 2005). I detailed those events, the meaning I came to make of them, and solutions to the problems they represented in my first book, Notes from the Waiting Room: Managing a Loved One’s End-of-Life Hospitalization. Aided dying does not figure prominently in my end-of-life lexicon although it occupies a well-anchored place within it.
In this magazine’s pages dying and death are usually discussed in loving terms. In our lives, loving people die while loving family do their best to attend to them. Love of life is the foundation of aided dying but working for it and agitating against it are not loving pursuits. In my own work, I address what I perceive as a significant lack of practical end-of-life guidance: how to identify and assess, then learn to mitigate and even overcome everyday prevalent obstacles to dying in peace. Similarly, I view aided dying as a practical issue for a practical problem, albeit with an existential root: to provide human beings with at least one guaranteed option to die in peace.
My readiness for aided dying debate has subsided since reaching an apex throughout 2015, beginning in February when aided dying was first introduced in the Colorado legislature. I’d been a fervent enough supporter that Compassion & Choices invited me to stand in the statehouse during the bill’s introduction and press conference, and you can see me pictured there. For the hearing I rehearsed my testimony to ensure I could shoehorn it into three minutes while still offering an intelligible delivery. I felt discontent with the inequitably managed speaking signup process, disenchanted at how disabled activist leaders took advantage of the proceedings and the inordinate deference shown by legislators to them—especially given the overflow crowd signed up to speak (all day and into the evening).
During mid-2015 I was able to offer readers of the Facebook group I curate, To Die in Peace: Overcoming Obstacles, a substantial aided dying debate because my old friend and graphic design/book publishing and end-of-life colleague Jennifer Ballentine agreed to engage therein to an unprecedented depth—a service I believe of great value to anyone who may have read and may yet read the threads. Doing this tested, and made better, our friendship.
Then, at an October 2015 end-of-life ethics and management conference in Los Angeles, California I presented Windrum’s Matrix of Dying Terms to an intimately small audience. Over several days aspects of aided dying, which had been passed into California law, were presented, heatedly debated, and lamented over. I learned even more about how opponents view and experience the ethics, reality, and implementation of aided dying. I learned on a gut level how intractable the issue is. And I tired of the controversy.
In my assessment both enactment and continued disavowal are simply politics. I don’t share opponents’ ethical concerns; I consider most of those arguments unethical because they would deny a guaranteed method for dying people and their loved ones to experience peaceful dying in a society where dying in peace requires more of us than should be necessary—often impossibly more. I believe that human beings have a fundamental right to die in peace, and if circumstance or society makes this goal inordinately difficult, to obtain reliable means by which to do so. To be clear, the context for this is advanced illness that would result in horrible or protracted dying, as defined by each dying person.
I have long held the baseline viewpoint that some aspects of our lives as high-order sentient creatures transcend social constructs. I see peaceful dying as a human right within human society, and if it was guaranteed available without the construct of physician assistance, I wouldn’t seek physician assistance. Simply: we are advanced sentient beings on a planet in a solar system in a galaxy; our last moments here are sacrosanct. Which means our last months-weeks-days must be too. Only Hollywood offers Deus ex Machina endings; in our everyday world a peaceful death almost always requires that truly peaceful dying time precedes it. For me aided dying is the only way to guarantee peaceful dying under a range of circumstances that are all too common in today’s societies.
Previously, I would passionately present a range of reasoned arguments supporting this position. An article like this requires that I offer them, and I will. But now I’ll preface them by saying to all the arguments against, “I no longer care.” Part of not caring about the arguments against (I do care about the people making them) is having realized (a) how intractable support and opposition to aided dying are—they are completely mutually exclusive; (b) especially in the United States, how limited any aided dying provisions will be, constrained to the most narrowly framed circumstances that most of us are unlikely to encounter; (c) the socio-political meanness of our times that makes meaningful reform across the dying spectrum unlikely; and (d) that the interests of a minority of disabled and religious figures are able, so far, to forestall the enactment of aided dying legislation.
Before addressing the arguments for aided dying let’s clarify a series of terms:
• Suicide is the taking of one’s own viable (non-terminal) life
• Euthanasia is the taking of someone’s life by another person. The context is medical and usually beneficent, but can be devious (which would be criminal). Beneficent euthanasia is routinely applied on a “wink, nod” basis although since no one involved will own up to it percentages are impossible to know (a Boulder county chaplain has publicly stated that euthanasia occurs, and is one who declines to publicly share statistics).
• Some distinguish between rational suicide (which might arguably be applied to those suffering from cognitive disease who request to be euthanized after declining beyond benchmarks they have established while still competent) and irrational suicide (jumping off a bridge during existential angst).
• Aided dying is the legal provision of lethal substances for ingestion by a dying person.
• Medicalized dying is dying under the control of mainstream medicine, usually in medical or social-medical facilities. It’s possible for medicalized dying to be humane and peaceful; much medicalized dying is torturous and existentially harmful to all involved.
• Natural dying is intended to mean non-medicalized dying under peaceful circumstances (although it could describe being eaten by a wild animal…). I suggest that natural dying only rarely exists in today’s world.
My primary argument for aided dying is that sentient beings have the right, and deserve the opportunity, to control, shape, time, and achieve a peaceful death when circumstances prove or predict that the opposite is likely. This viewpoint is predicated on accepting humans primarily as universal-planetary beings, and the idea that each of our sole dying experiences ought not be controlled by corporate, religious, or social constructs—especially when those constructs are so lacking in sanity and justice, seemingly inured to positive development, and likely to be predicated upon the meanest (in both spiritual and financial meanings) policies.
On a practical level, my short answer to the irony of being suspect of authority yet wanting a state-legislated process controlled by medicine to assist peaceful dying is “quality control.” If ever we want known quality products it would be when we plan to ingest them to peacefully end our lives. Shopping internationally for illegal substances is needlessly risky. Short of over-the-counter access, some system needs be in place to control access. I have thoughts about softening the direct link between doctors writing lethal prescriptions and the dying people who’d take them but our society is not ready for them (the scheme would make terminality a class, with a range of cherrypick-able resources and rights available to class members).
The likelihood is that most peoples’ dying will remain medicalized, if for no other reason than that medicine’s beneficent success in saving and extending life will probably result in most of us engaging medical treatments as we near death. So it’s not a stretch that individuals seek a way to have a medicalized death which is guaranteed to be peaceful and which we can control ourselves. It’s no surprise that supporters seek an out that’s transparently known across the social and medical spectrum.
Disabled people have fears that deserve addressing. I’ll do so with the same outspokenness that disabled activist leaders (DALs for short) offer in their opposition. Because I believe that their fears are outsized and are accorded undue influence, I’ll preface with my assessment that the disabled leaders I encountered during aided-dying proceedings are strong people who overplay their hand at the expense of broader society. Lately I muse about how much society has done to accommodate the disabled: curb cuts, ramps, transit access, parking, building and room access. This is all just. We have helped enable the disabled, as we should. But when it comes to aided dying, the DALs want to disable everyone else.
Many disabled people support aided dying (my sister is among them). The DALs don’t; they argue their fears of insurance company shenanigans that would withhold treatment other than for aided dying were it legal, and of generally being coerced into applying for and consuming the lethal prescription. The latter is unlikely: narrowly proposed aided-dying statutes all include requirements for identification, being actively terminal and wanting to die, and navigating a lengthy, involved application process. Circumventing these provisions would be felonies.
Further, the DALs, who practice civil disobedience (see their websites and links) speak of the “slippery slope” on which they foresee disabled people being pushed off to die. Their statements are quite forceful.
Conversely, consider the millions of people dying horribly year in and year out, since the introduction of life support technology in the mid-twentieth century. Add some number of harmed survivors per deceased loved one, whose memories of their loved one’s dying times can become instantly and fully inflamed at any mention of their dying even years later—you may be one, as am I. I say we’re already at the bottom of a society-wide slippery slope spanning generations. Unlike the DALs’ fears, mainstream society has and will continue experiencing enormous numbers of needlessly mean deaths because that’s the norm—of which millions of people are legitimately afraid; the deaths have in fact happened. Aided dying is the legitimate grassroots response to horrific dying of genocidal proportions. Even aware, non death-denying, spiritually-engaged people must be broadly skilled and hyper-vigilant on their own and their loved one’s behalf so as not to get ensnared in inhumane dying situations.
Coloradans will vote during the November 2016 election on whether to establish ColoradoCare, a state-wide universal healthcare system. My reading of the constitutional amendment by which ColoradoCare would be set up suggests that disabled activists could lay to rest their fear of being denied treatment and herded toward premature dying. Aside from boutique add-on policies, health insurance companies in Colorado would cease to exist. ColoradoCare notwithstanding, if the disabled need health insurance reform, perhaps the DALs ought to lobby for it rather than against aided dying.
Aided dying opponents suggest that other end-of-life reforms would benefit more people and hence should be pursued in lieu of aided dying. I have some history proposing medical reform. In 2008, early in my transition to an end-of-life reformer, I submitted a public initiative to the Colorado Blue Ribbon HealthCare Reform Commission, “The Option to Die in Peace.” It was the only one of 31 submissions to mention “dying” and “death.” Over its 12-month meeting period the 27-member commission never once discussed it. Interestingly, my proposals foreshadowed Dr. Ira Byock’s proposals in his February 2015 op-ed published in the Los Angeles Times opposing aided dying in California. In fact I went further. We both suggested medical school reform with palliative, pain management, and eldercare components. We both called for enhanced physician licensure. Further, I proposed a statewide hospice public education campaign. Aside from an email from an old business colleague turned end-of-life professional, I neither received nor heard of any statements or action from anyone in the Colorado end-of-life world about the initiative. I have thought it curious that professionals didn’t take the public opportunity to advance an even more meaningful proposal than my admittedly lightweight one (I offered no financials).
I heartily support a wide range of reforms to our dying scene. But, they ought not be exclusionary, as “many roads lead up the mountain.” I continue to wonder why the medical community does not enact sensible treatment reforms within it’s own sphere, or hasn’t organized to propose the reforms legislatively, or why a man of Dr. Byock’s stature endeavored in an op-ed to piggyback worthy medical reforms on an aided-dying bill he staunchly opposed. (The reasons that occur to me in themselves support the justice of aided dying.) Meanwhile, generations have gone by without sensible reform. I’d happily support both palliation/hospice and aided dying reforms, but opponents won’t.
Safeguards and reporting are meaningful to ensure that only people who want to avail themselves of aided dying do so. Front-end safeguards are built into the application process spanning multiple weeks, requests, and meetings. I agree that application safeguards have room for improvement through better broadcasting of palliative and hospice information. The California Compassion & Choices campaign chair responded to a challenge about the lack of usage reporting (and hence safeguards because the reason for reporting is in part about safeguarding) by saying “we view safeguards as obstacles.” This honest assessment resonated with me. I don’t mind reporting requirements but no longer view them as necessary. Reporting serves social oversight and costs money to implement, but it does not aid dying in peace.
The issue of narrow versus broad use is raised against aided dying legislation, the criticism being that only old white well-educated people use it and then scantly, hence it’s not worth the time and effort. I say “if we build it they will come,” and if we were to expand access more would come. Thousands if not millions of us could benefit from aided dying to die in, and at, peace.
Catholicism has brought this planet much good and much bad. In any case the power the Catholic church wields is disproportionate to its adherent census, and even some of those disagree with its end-of-life strictures. The only people applying for and using aided dying will be those who want and can qualify for it. Beyond that it properly is no one else’s business.
Some say that those wanting aided dying do so mindlessly. To the contrary: people wanting aided dying have given more thought over more time to their dying process and death than anyone in our death-denying culture. Aided dying proponents are among the most death-literate and death-accepting members of society. For newcomers, the statutes’ application processes offers many weeks of off-ramps for anyone reconsidering.
In an ideal world the US Supreme Court would issue a finding as Canada’s has, that the option of dying peacefully, guaranteed through aided dying, is a human right that cannot be abridged and set the States to making their own provisions for enabling it. As things are, it takes an average of six tries to enact aided dying in any state. Currently Colorado has gone through two, with the effort advancing slightly on the second try. Each state’s effort could span a decade.
When it comes to dying in peace, we’re first and foremost sentient beings in a cosmos and only secondarily subjects in an increasingly oppressive socio-medical system. Sentient beings ought to have available sane, peaceful dying options, to optionally use under adverse dying circumstances. To me this is the overriding and only ethical aspect; the rest is policy which for me has devolved into noise.