The Indignity of a Death with Dignity

The story of Brittany Maynard, a 29-year old newlywed who has been given the diagnosis of terminal glioblastoma, an especially aggressive brain tumor, has gone viral over the past week. Many know the story already, but it centers on her decision to end her life by taking an oral medication prescribed by her physician, who will be sitting at her bedside with her husband and other members of her family at the end, at a date she has selected to coincide with her husband’s birthday later this month. The details are chronicled in People magazine, which is significant because of the role the magazine plays as gatekeeper for what is to be considered culturally-normative, and because it is where you can see the heart-wrenching video she and her husband prepared to explain her decisions.

I will not attempt to mount a thorough rebuttal to her choice of physician-assisted suicide, one made to avoid the certain-suffering that will face her as cancer ravages her mind and body. Perhaps the best, most elegant response I have seen can be found here, the words of a fellow traveler on the awful road of terminal glioblastoma. Other responses, including a Matt Walsh blog and even a debate on the Blaze, offer great commentary as well.

But so much of what Brittany says needs to be answered by many more, those who have profound objections to what she is saying, because she is sharing this difficult and intimate season of her life for reasons of advocacy. She, her husband, family and doctor support the causes of the “Death with Dignity” movement with the organization “Compassion and Choices.” After her diagnosis, Brittany specifically moved to Oregon where the process of physician-assisted suicide (PAS) is legal. Within the People article itself, there are plenty of opportunities to see how semantics will be used in the future to argue for PAS.

Brittany makes it clear that, in her view, this is not suicide…she does not wish to die, but her life is to be taken from her by cancer and “it’s a terrible, terrible way to die.” I don’t disagree with the latter sentiment…I pray that it will not be the way I leave this life, either. But I believe that my life is not my own…I ceased believing it was long ago…and I have no authority to decide how I leave it. I trust a Lord who has never ceased to be my advocate for what is best for me, and I will trust that same Lord with my eternity. But those who attempt suicide, or succeed, rarely think that ending life is what they really want, but that the “terrible, terrible” pain they face makes death the better answer. If the pain (emotional or physical) would end, suicide would be unnecessary.

She addresses ethics: “I believe this choice is ethical, and what makes it ethical is it is a choice.” Again, I don’t want to be cruel to someone who is suffering in a way in which I have no way to relate, but this argument is both insipid and dangerous. It is the latter because it is supported by little ethical framework than that of radical autonomy. She believes that, because she can ostensibly change her mind at any time (and many pray that she will), all is right with her choice. Never mind that it seems unlikely that someone so committed to the cause as she will join many (nearly half) of those who sign on with the “Death with Dignity” provisions, getting prescriptions written…and never follow through. Perhaps she will not find herself as free as she thinks. As resources become scarcer, some with the “choice” will find other subtle (or not-so-subtle) pressures to follow through. Beyond coercion, “choice,” as an ethical paradigm, also fails to account for collateral damage to others.

Brittany has had a remarkable life in her 29 years. Her accomplishments, including climbing Mount Kilimanjaro, show someone who has been in control of her life. The beautiful photos attest to a young woman that seems to be dying in her prime. There is a sense that she fears the pain that accompanies death from a terrible disease, but the greater sense is that she will lose control. Pain can be controlled by medication; control of one’s fate, once lost, is irrecoverable.

Her final sentiments are spoken thusly: “I’m dying, but I’m choosing to suffer less,” she says, “to put myself through less physical and emotional pain and my family as well.” This last part makes me want to cry. I have no idea what her faith system is, but I see that it isn’t one that can find the redemptive value in suffering, in the “ministry of dependency” that comes from letting others love us well when we leave this life. I am not a vitalist; I don’t want to live my life for as long as possible and at all costs. But I do want to let my faith be revealed in the trust I place in God and the people with who I have been blessed to share my sojourn on this Earth. It’s a trust that means that as I lose lucidity and seem less dignified, I will know that my true dignity as a being created in the very Image of my God, one undiminished by a time of mental and physical incapacity that occurs before I pass into an eternity that bids pain and sorrow goodbye forever. The indignity of a rotten death pales in comparison to that inherent dignity. I wish Brittany that same knowledge.

The Alzheimer’s Epidemic and the Developing World

Headlines of “Alzheimer’s Epidemics” have been prevalent for several years now, with an uptick, it seems, in the past year. I am often reluctant to read further when I see one, largely because it seems something we can’t do much about and because such news is often sensationalized, with several crackpots offering “guaranteed natural cures” and others spewing conspiracy theories that implicate “Big Pharma” and other sinister types as the reason for the increase in cases.

Several days ago, an article ran in a Hong Kong newspaper declaring “Alzheimer’s Disease International Warns of Dementia Epidemic.” The article stated: “Many governments are woefully unprepared for an epidemic of dementia currently affecting 44 million people worldwide and set to more than treble (sic) to 135 million people by 2050, health experts and campaigners said yesterday. Fresh estimates from the advocacy group Alzheimer’s Disease International (ADI) showed a 17 per cent increase in the number of people with the incurable mind-robbing condition compared with 2010, and warned that by 2050 more than 70 per cent of dementia sufferers will be living in poorer countries.” Few of the previous articles seemed to reference this geopolitical angle.

We still don’t really know exactly what causes, or how to prevent, Alzheimer’s dementia, crackpot theories aside. And the increase in cases is the ironic result of a longer lifespan. People are not dying from prostate cancer and heart disease in the same numbers they did in the past; we’re healthy enough and living long enough to die of disorders associated with dementia instead.

What is different now is the idea that the developing world may see such an increase in cases. Somehow I always think of Alzheimer’s disease as a uniquely Western disorder, where we face ethical issues that seem to contrast sharply: How do we avoid going too long and how do we avoid the impulse to ignore the dignity of individuals who are “just a shell of their former selves?” Here we deal with fears that our healthcare system, already dealing with systemic traumas from unfolding government policy changes, will face the crushing burden of millions of baby-boomers with dementia in the not-so-distant future. Will the care of these individuals bankrupt the system for future generations? Will we find that these people, who are “no longer themselves,” be granted a “death with dignity” when their memories fail and their caregivers’ burdens increase? These are the questions of the West.

But what about the rest of the world? We have grieved the dismal lifespan statistics of many in sub-equatorial Africa who suffer the scourge of HIV and leave scores of orphans in their wake. Suppose we find that the many initiatives underway there really do improve the stats, and we start to find people living long enough to join the ranks of Alzheimer’s. The article quotes Martin Prince, a professor at King’s College London’s Institute of Psychiatry, who says “most governments are woefully unprepared for the dementia epidemic,” and that “only 13 countries have national dementia plans.”

But here we look at cultures. The HIV epidemic in Africa is a tragic result of certain cultural phenomena, with many, many innocent victims, and its prevention and treatment must be addressed within this cultural crucible. The way we look at dementia in the West is likely quite different than how it is regarded in other parts of the world. The way we view the elderly and infirmed, the aged parent for whom it is exhausting to provide basic care and who cannot even recognize us or remind us of what they used to be, may be quite different in places like Africa or Asia, where the elderly are often revered. Sure, the medical resources to care for scores of dementia-sufferers will be challenges of distributive justice. But at its most basic, Alzheimer’s isn’t about technology or medical marvels, but about dedicated caregiving to members of society that Jesus must surely have considered among “the least of these” in his teaching. I don’t look forward to an “Alzheimer’s epidemic,” because I may well be one of its victims someday. But perhaps there will be some perspective, some grace, shown by other cultures that suffer through it, too, and, perhaps, we will look to the developing world to see just how it’s done. These “national dementia plans,” however they play out, may be quite elegant in their own way, and offer some guidance to the “developed” world.