A Cure Worse Than Death: The Failures Leading to Physician-Assisted Suicide

Do you want to die? Most reading this will, on most days, say no. But why? The reasons vary for each of us, but the strongest tendency is to imagine waking again tomorrow morning. How do I know? I’ve done it over twenty thousand times now. Maybe you’re only halfway or less to that number, but you have to admit, it’s habit-forming. So it is almost impossible for most of us to imagine, on most days, how someone might choose to break with such a long-standing pattern and to proactively end their lives.

But there are enough who do that our culture now embraces what was, until very recently, pushed to the margins, into the dark corners, out of polite conversation, and certainly against public policy. What had become an illegal cottage-industry leading up to the publication of Final Exit by The Hemlock Society and the media-celebrity of Dr. Jack Kevorkian, has now gained not only broader acceptance, but legal sanction in several states. The number of states establishing a “right-to-die” through Physician-Assisted Suicide (PAS) seems destined to grow until, eventually, some case or other prompts the U.S. Supreme Court to decree it as a constitutionally-protected right (as in 1954 – Brown v. Board of Educaction “legalizing” public school integration; 1973 – Roe v. Wade “legalizing” abortion; or 2015 – Obergefell v. Hodges “legalizing” same-sex marriage).

Understandably, some physicians see a patient’s decision to proactively hasten their end-of-life as representing a failure. So do I. But there are two different failures in view here. One of them is unavoidable. At some point, the tools, techniques, and therapies of modern medical practice fall short of restoring a patient’s health, or even of preventing that patient’s death. But while, in my life, there is still hope of the process accomplishing its stated goals, I am thrilled to have a primary-care physician who clearly states what steps are required to prolong and improve my life. I have known physicians, though, whose patients have died, despite efforts that should have prolonged or enhanced their lives. Sometimes, the medical system fails to keep a human’s physiological system functioning.

But there is a second failure in view when a patient chooses to proactively hasten the end of their life. Not that I am unsympathetic to the decision. In more than three decades of pastoral ministry, I have sat with enough patients and families to know how dreadfully difficult life can become, even with vitally-supportive faith communities being as attentive to their needs as possible. Still, even when the medical system announces “there’s nothing more we can do” (by which we mean “there’s nothing more we can do to cure you”), I do not support suicide, even if legally sanctioned and popularly recommended.

My belief in the sanctity of life extends from conception (and even prior to physical conception—given Jeremiah 1:4-5) to natural death. So, is the legislation sanctioning Physician-Assisted Suicide a failure of the Church’s emphasis on the sanctity of life. Perhaps to some extent. But only because we have failed to offer a viable alternative to torturous procedures. For some patients, we propose what they interpret as senseless dissection (surgery), systemic poisoning (many pharmaceuticals, including chemotherapy), and selective incineration (usually through radiation). We accept the cost-benefit ratio when there is an expectation of recovery, restoration, or at least slowing the dying process. But what about those patients for whom there is no longer any hope of cure, who see our role as merely prolonging a life of intensifying misery? The dichotomy routinely being presented to such patients is a false one, but it proves a compelling argument for many: “When the cures we offer are no longer effective, you deserve the right to have us kill you.”

The dichotomy (a choice between only two options) is a false one. But it is a pervasive one, nonetheless. Modern medicine routinely lives up to our expectation: “Cure me.” When we are beyond its best efforts, what do we then ask our doctor to do for us? If we imagine that we have no other options than to die painfully and protractedly, in a downward spiral of ever-decreasing self-determination and dignity, it may make sense to many to choose the only other option being so popularly promoted: Physician-Assisted Suicide.

So, the patient asks the medical community: “When you can no longer prolong mu life, are you willing to hasten its end?” The legal answer in a number of states is now, “Yes, we are. And yes, we will.” But before you or a loved one finds yourself facing that binary decision, the false dichotomy of choosing either “painful life or peaceful death,” consider that there may be other answers.

A small, and apparently invisible part of the medical community exists to serve a third purpose. Our goal is neither to prolong your life nor hasten its end. Providing pain-relief, symptom-control, and as much improvement in your quality of life as possible, the goal of hospice care is nothing more or less than to help you live until you die. Amidst a culture that will continue to gravitate toward offering just two options to dying patients, my hope is that you will at least discuss with us what we might be able to do for you, when you’ve been told “there’s nothing more we can do.”

"You matter because you are you, and you matter to the end of your life. 

We will do all we can not only to help you die peacefully, but also to live until you die."

— Dame Cicely Saunders, nurse, physician and writer, and founder of hospice movement (1918 - 2005)

From Baltimore to the Bedside and Beyond: An Outsider’s Exercise in Problem-Solving

Pick a crisis, any crisis. If you need to refresh your memory, simply glance at any media site or social media feed, and there are several from which to choose. Find one that ignites a sense of passionate indignation in you…if you dare. Understand going in that my intention is to make you live with that crisis, at least for a few minutes.

Now, walk through the topic with me and consider two aspects of it.

First, where are your sympathies? Which side are you on? Think about how much you have heard about the issue. Which side of the story do you instinctively accept? Whose arguments do you automatically distrust? What do you consider the non-negotiable principles on which the right conclusions are based? And where are the opposition’s conclusions incorrect?

Second, how deep is your investment? Why do you care? Ask yourself how much you really know about whatever topic you’ve chosen. Now consider how vehemently you disagree with those who are most directly affected, especially those who have extensive experience in addressing the kinds of crises you’re considering. As right as you are in your stance on some or all parts of the arguments, could those who are immersed in the situation have a clearer view of how, or even whether those arguments apply to this case?

Let’s see how these questions apply elsewhere.

A City-Wide Test Case

For Paul Louis Metzger (in his post here), the conflict in view is actually the aftermath of a tragedy. In Baltimore, Maryland a twenty-five year old man was arrested. He was injured while in police custody. He died a week later as a result of his injuries. That is the tragedy, not the aftermath. In fact, Metzger focuses even beyond the subsequent demonstrations, destruction, assaults, injuries and arrests that occurred in the wake of this tragedy. Metzger is reflecting on a request by the No Boundaries Coalition of Central West Baltimore. Entitled “Please do with and not for” (and found here) they plead with “anyone who is planning or organizing events in Sandtown from outside the community.” The poignancy of their experiences is well-documented. Indeed, the anecdotal evidence they offer clearly supports the claim, “Living in Sandtown right now feels like living in a war zone.” And much of the battle is resulting from the “outsiders” that both Metzger and the Coalition have in mind. The Coalition’s post ends with these requests: “Please respect our leadership. Please respect the work we’ve been doing and will continue to do. Please come and work with us and not for us.”

Metzger’s concern echoes that of the Coalition, which in turn echoes my own experience, “All too often, outside experts who claim to be efficient in addressing problems intrude and interfere in communities rather than ask them how they might be able to partner with them.” That perspective resonates with me, but not because I intend to organize community marches, rallies, or other protests over the injustices occurring in the Fall River Valley, the Intermountain Area, or the broader Sate of Jefferson community. Where I am the outside expert, however, I do sometimes “intrude and interfere.”

A Bed-Side Test Case

I, too, was responding in the aftermath of a tragedy. Long after the diagnosis, and well beyond the point where treatment was determined to be ineffective, and even months after being enrolled with hospice care, I was finally invited to meet with the patient. And despite a couple of perfectly charming visits in which the patient exhibited remarkable candor about their condition, their beliefs, and the particular challenges they faced…I was dismissed. At least temporarily, I no longer have an invitation to visit. Even if I were to call ahead, “it’s not you; it just seems like so many are here so often; even a call would make me feel obligated.” We agreed that I would come next only when called by the patient (or others in the household who are also entitled to my care).

And I believe I will be called, when there is a need. When there is an opportunity to “come and work with” the patient, and “not for” them, I will be there. They now have a face to go with my name and title, and a rapport is established so that I know how they prefer to communicate, where their relationships stand, and what kind of crises might arise for which I would be called to intervene, though not to “intrude and interfere.” But until that crisis, my presence would intrude and interfere, since there is not, currently, anything for me to do either “with” or “for” the patient. But if I were to be called, as I often am, to meet and serve a new patient for the first time only once they face a severe crisis, my ignorance of their circumstances can prove insurmountable in seeking to provide them with the best care possible.

In Metzger’s example, it’s a matter of knowing the local community. For me, it’s a matter of knowing the patient’s circumstances. For you, well…we can talk about what you know in a moment.

Exploring Our Responses

As you walk through the issue you chose to consider, and as Metzger walks through the issue He chose to consider, and as I walk through the issue I chose to consider, we all face the same questions.

The first group of questions I posed above, to condense them, could be stated: Whose side are we on, and why? Metzger advises that outsiders best serve when they give “assistance” to others “to take ownership of their problems.” For this to happen, “we need to respect and listen to the local people, learn from them, and invest in them.” I agree. As tempting as it is to try to “fix” things for patients (and others), at the end of the day I go home and leave them alone with the problems they face. As much as I identify alongside various segments of our community, I can only be me, not them. In that light, let me ask you to reflect on those you sympathize with in the issue you chose to consider. Is your investment in equipping them to address their own problems? And is your assistance based on having listened to and learned from those most directly affected?

The second group of questions, again in need of condensing, I would phrase: Whose side are we not on, and have we listened to them as well? Metzger openly opposes “the tragic irony that insider and outsider experts and cultural elites alike fail to listen to the locals in places under duress.” As with my eventual return to my own home, those with “a better idea” for the communities Metzger is discussing are not “the local community (which) will have to bear the burden and carry on with the struggle once the spotlight vanishes and visitors depart.”

But even in his opposition to their “seagull” habits (a description I have learned elsewhere for those who fly in, consume resources, and leave behind only the processed remains of those resources), Metzger engages them (us). Where there has been intrusion and interference, there could just as easily be a far more effective investment. Those “outsiders” have, at least, the potential to offer an objective perspective on such polarizing issues (whether community destruction, terminal illness, or whatever issue you chose to consider). Very often, they (we) have much more to offer as well. But whether we provide the panacea (a cure-all) we imagine, or a poison (the kill-all) in the form of an inaccurate prescription, the ongoing results largely depend upon how clearly we have listened to those who are afflicted, on both sides of the issue.

“Who Is Qualified to Advocate for Me?” – On (Some of) the Frustrations of Mental Illness

(When you get tired of the whining, just jump to the paragraph after where it’s marked, “Here’s the important point.”)

I am tempted to joke, again, about the Ann Hedonia film festival. I could give you an imaginary roster of “famous film noir classics” in which the protagonist manages to maintain a dour demeanor of depressed indifference, even as tragically heroic actions preserve and protect others, without emotionally, mentally, socially, physically, or spiritually benefitting the movie’s central character.

Still, Ann Hedonia keeps making personal appearances, bringing her black dog along with her. And even though her roots are starting to show, that doesn’t stop her from bringing the twins out to offer their equally sour succulents, spines and all. She fulfills her usual typecasting, diminishing any desire to pursue otherwise enjoyable activities. But she’s expanded her repertoire to include a diminished enjoyment of even those activities I manage to pursue. In short, I don’t do fun stuff. And on those occasions when I do what used to be fun stuff, I don’t find it fun. And that’s before the black dog finds a quiet corner in which to do his business.

You won’t find her at IMDB (Internet Movie Data Base), and searching for her elsewhere may lead you to some very different conclusions than her personification of anhedonia, the inability to derive pleasure from otherwise pleasurable activities. As you can imagine, there is no fan club. (I think Sylvia Plath talked about maybe trying to organize something, but she doesn’t return my calls.)

If it seems that I am stalling, then you’re being perceptive. If you know me well, then you probably know that there have been good reasons to be, temporarily, sad. True, the San Francisco Giants are not in the playoffs, but it’s an odd-numbered year. And whatever business the Forty-Niners are pursuing is likely to self-correct, eventually. But some of you know about the long string of close personal deaths. Others are aware of the disappointing return on several deeply personal investments (involving the return of the abused to their abuser, the addict to their addiction, and the repeated disappearances of the purportedly devoted). There are other struggles that I pretend are invisible even to those closest to me. But the lie is wearing thin.

Yet all of you, I imagine—and, frankly, I myself—remain acutely aware of the many resources, benefits, and blessings not only available, but stocked deep in my personal inventory. And that’s where the key problem lies for many of us.

I perceive myself as having no standing from which to advocate for those experiencing mental illness. I am functioning, even as I find it difficult to have fun. (And I really do believe that fun is overrated as an evaluative category of life anyway.) Many others are struggling far more with far less ability to do anything about it. I can afford the counselor that I, until recently, avoided. I can adjust my diet and exercise in an attempt to foster endorphin production. (And I have, but it didn’t. Hence the counselor appointment.) There is no legitimate reason for me to be depressed—which further depresses me while simultaneously shaming me. No wonder I don’t get invited to many parties any more.

And yet, if I cannot speak about depression because I am not depressed enough, am I asking those who are more depressed than I am to bear the greater burden for communicating their needs? It would seem so.

But I was recently told that I could not advocate on behalf of a population whose status I do not share. The message was clear: those in need are the only ones with the right to speak of their need. But they don’t, any more than I willingly speak of my own minor difficulties. And yet, as those difficulties have worsened, I find that I wish someone else would advocate on behalf of this population in which I am numbered. Because I have been less and less willing to speak. In some ways, I feel like this post is something like a shout back toward town from edge of the growing chasm that threatens to swallow everything I know and love. I may not choose to say more.

Granted, the breaks between segments of the football game invite me to celebrate with them. McDonald’s now serves breakfast all day long (and the Twitter-pated are ecstatically emoji-ing over the news). Kia is finally building a vehicle for football families. The average military family can save over three hundred and forty-five million dollars by selecting USAA as their financial institution. And there are even more reasons coming at the next commercial break for celebrating life in these United States. But even in the face of these amazing developments, and “the power of Kaepernick” (in the words of the commentator enjoying the Niners’ quarterback as he leads the first sustained drive of the game), I find that my hopes, minimal as they are, rest…well, where? Not with me. Not with my self-help attempts. And not really with the counselor who comes so highly recommended.

But I am going. And I am hoping. Before it gets any worse. I think you should know why.

(Here’s the important point.)

This is why I am admitting my malaise, and moving toward the care I believe I need:

I recently heard a caregiver explain how strong they were, how much they were enduring, and how they would know when it was time for them to abdicate their role, turning the care of a loved one over to others. They expressed that they would not wait too long. When they were “ninety-nine percent done,” they promised, they would let others know to take up the slack of their absence.

My objection to their plan, as gently put as I knew how, was that when others have to respond, it would be good for there to be a little more than one percent of the caregiver’s attentions available, if for no other reason than to share with their replacement(s) what needed to be done in their stead. We agreed on eighty-five percent of their capacity as allowing enough time to make such a transition. But even at eighty percent, there is the possibility of crisis, of personal illness, or of any other unforeseen circumstances that might suddenly push them past their capacity. Engaging in some self-care in order to prolong their availability, and even to alleviate some of the pressure that has pushed them toward the end of their abilities, they may find themselves not only able to provide the care they want to give, but to be healthier in doing so as well.

If I, then, having advised others, choose to run my life too deeply into the high ninety percent range, then I am pretending that there will not be another string of close personal deaths, or other disappointments, or discord, dysfunction, or further debility among those I love. The reality is that I should expect more of the same. I serve a congregation where the average age is significantly higher than my own. The health of my immediate and extended family is unlikely to improve radically any time soon. Oh, and I continue to form close personal friendships with Hospice patients who are, by policy, supposed to be dying relatively soon.

So, before I use up too much more of whatever margin actually remains, I will be talking it over with a competent mental health professional. And if anything I have described in any of the above resonates with you, I pray that you do the same. But if you’re waiting for someone to advocate for you…I find that I can only advocate to you that you avail yourself of whatever resources you can.