FROM OUR READERS
This text is in response to the series, “The Case for Medical Aid in Dying” by Douglas W. Heinrichs, MD.
“I don’t need to be a burden.”
Some people say it as a matter of fact. Others whisper it through tears or mumble it in fear. Irrespective of the way it is claimed, the words pull at my sleeve, turning me away from my typical line of questioning. I decelerate. What keeps you going? What else worries you? Are you glad to be alive even within the midst of all this?
Self-perceived burdensomeness is a facet of suffering that afflicts individuals with chronic illness, pain, and disability. It’s also related to suicidal ideation.1-4 What does it mean to live well when such a stark challenge confronts people of their suffering? As if to shrug, society offers a distinct way. Losing autonomy and dignity, and becoming a burden, are among the many top reasons people end their lives using state-sanctioned means.5,6
In his 3-part series on medical aid in dying (MAID; although I’ll using the terms assisted suicide and euthanasia, ASE, for the sake of clarity and fidelity), Douglas W. Heinrichs, MD, attempts to each submit a positive argument in favor of ASE in addition to disarm common objections.7-10 There are at the least 2 alarms he fails to heed.
First, the usage of death is unwieldy and harmful.
Stumbling from the ashes of World War II, nations were forced to reckon with how they may rebuild and live together again. Consequently, the mid-Twentieth century saw the creation of the nascent field of “bioethics.” This took shape within the early types of the Nuremburg Code, the Declaration of Geneva, the Declaration of Helsinki, and the Belmont Report.11 The spirit animating all these projects continually reminded physicians, scientists, and politicians, “We must not let the atrocities of Nazi medicine occur again,” even when, sadly, abuse (albeit not of the identical magnitude) did proceed to occur. Nevertheless, the landscape of medication and medical science is nothing just like the early Twentieth century, due to the labor of many individuals who laid these ethical and legal foundations.
Over that very same period, advances in medical science wrought near-miraculous outcomes for human health. Paradoxically, though, such advancement allowed for the creation of states of chronic critical illness and the sustenance of life that many found undesirable (for themselves, if not for others). The rising hope that technological advancement would proceed its abolition of human suffering unabated was joined by the suspicion that the human body may very well be enslaved to that technology (eg, unable to be extubated) or diminished in such a way that it will not be allowed the merciful release of death. This tension coalesced each within the bioethical literature and within the American courts around a so-called “right to die,” codifying a patient’s right to say no life-sustaining therapies.
This course of history couldn’t have been predicted while the ventilator or other technologies were being developed. It supports Gerald McKenny’s warning that, “…the very technology that originates in the hassle of the trendy subject to bring the external world under his power ends with the facility of technology to recoil back and destroy or radically refashion the very subject whose power it’s.”12 Neil Postman agreed, remarking that “technological change is just not additive; it’s ecological,” meaning that the ventilator, for instance, did not only “add something; it [changed] every little thing” about how we practice medicine.13 Things like the auto, the bank card, and the web, greater than being mere tools, have shaped the way in which we see our world, ourselves, and one another. So, too, with other paradigm shifting medical technologies like antipsychotics, transplant medicine, the defibrillator, and, as I argue, ASE.
Technologies carry their very own guarantees into our culture. How does our culture respond? Philosophers like Postman, Jacques Ellul, and others raised concerns that the Twentieth century was certainly one of increasing optimization modeled after the machine. This context matters as we consider ASE in our modern-day because, as Ellul wrote14:
“The intrinsic characteristics of the fifty explosions are the identical. But when forty-nine shells go off in some distant place and the fiftieth goes off within the midst of a platoon of soldiers, it can’t be maintained that the outcomes are similar. A relation has been established which entails a change. To evaluate this variation, it is just not the intrinsic character of the explosion which have to be examined, but slightly its relation to the environment.”
What’s the connection between ASE and a culture that glorifies strength, independence, and efficiency? Are there things that the practice of ASE teaches such a culture? What in a culture inclines it toward using ASE, and why for certain purposes and never others? Ellul goes on to explain the world during which we had been living within the mid-Twentieth century and definitely inhabit more fully now:
“Technique has penetrated the deepest recesses of the human being. The machine tends not only to create a recent human environment, but additionally to switch man’s very essence. The milieu during which he lives is not any longer his. He must adapt himself, as if the world were recent, to a universe for which he was not created. He was made to go six kilometers an hour, and he goes a thousand. He was made to eat when he was hungry and to sleep when he was sleepy; as an alternative, he obeys a clock. He was made to have contact with living things, and he lives in a world of stone. He was created with a certain essential unity, and he’s fragmented by all of the forces of the trendy world.”
By “technique,” Ellul meant all those forces that bend toward efficiency. Once this efficiency mindset is introduced right into a society, it goes all over the place, as Ellul argued: “Technique can’t be otherwise than totalitarian. It will probably be truly efficient and scientific provided that it absorbs an unlimited variety of phenomena and brings into play the utmost of knowledge. With a view to coordinate and exploit synthetically, technique have to be delivered to bear on the nice masses in every area. However the existence of technique in every area results in monopoly.” So, it is just not enough that technique helps us be more efficient at work, for instance; now we must optimize our health, families, vacations, cooking, and so forth.
Postman captured the essence of Ellul’s description within the word “Technopoly,” writing that the seeds of Technopoly were first solid within the early Twentieth century15:
“…The Principles of Scientific Management, published in 1911, comprises the primary explicit and formal outline of the assumptions of the thought-world of Technopoly. These include the beliefs that primary, if not the one, goal of human labor and thought is efficiency; that technical calculation is in all respects superior to human judgment; that in reality human judgment can’t be trusted, since it is suffering from laxity, ambiguity, and unnecessary complexity; that subjectivity is an obstacle to clear pondering; that what can’t be measured either doesn’t exist or is of no value; and that the affairs of residents are best guided and conducted by experts.”
A lesson that Technopoly teaches people is that “we’re at our greatest when acting like machines, and that in significant ways machines could also be trusted to act as our surrogates. Among the many implications of those beliefs is a lack of confidence in human judgment and subjectivity. We now have devalued the singular human capability to see things whole in all their psychic, emotional and moral dimensions, and we’ve replaced this with faith within the powers of technical calculation.”
What does all that mean for ASE? Humans can never reach the pinnacles of efficiency to which Ellul’s “technique” and Postman’s “Technopoly” hope to aspire, which was why they each wrote their warnings. Technique and Technopoly set us up for dehumanizing failure. A “life unworthy of life,” a “burden,” is just such a product of that culture: someone who is just not strong enough, independent enough, wealthy enough, needed enough to proceed living. Chronic and serious illness, suffering, and dying usually are not efficient. They threaten our dignity because they threaten our fantasy of autonomy. The utilitarian calculation is just not within the favor of those that are too weak to sustain the facade of independence.
In such a culture, the usage of death as a medical instrument is unwieldy and harmful. It fails to account for a way monopolized by efficiency our culture has change into. Its naive promotion exacerbates the dehumanization that such a culture ferments. Proponents like Heinrichs fail to account for ASE’s great power not only to directly harm those that use it, but additionally to deform the culture that allows and even promotes it.
A Luddite could misuse these concerns as an argument against any technological progress. Handled in a measured way, though, they need to give us pause before taking on a recent practice that has a possible for foreseen and widespread change (let alone unexpected change). A review of the history of death-as-instrument is beyond the scope of this essay, nevertheless it must be left to proponents of ASE to ascertain whether there has ever been a protected use of death (eg, execution, assassination, war, suicide) that didn’t end in direct harm in addition to cultural deformation.
The second alarm sounds: even the offer of ASE itself is harmful.
The birth of bioethics sanctified the inviolability and dignity of the human individual. This was crucial to fortify moral barriers that may resist even the considered repeating the terrible crimes of the early and mid-Twentieth century. For many years now, clinicians have told their patients, “It’s your selection. You choose. We’re respecting your autonomy.” For the overwhelming majority of medical decisions, that’s critical. It helped to supplant the paternalism that, while not as egregious as Nazi medicine or American forced sterilization, actually didn’t respect patients as individuals.
Into that bioethical milieu arose a pandemic that has spanned nearly 3 years and claimed thousands and thousands of lives. Suddenly, decisions are more complex: it is not any longer just “your selection” and “whatever you select, we respect your autonomy.” Now people need to think about others, even the weakest in society. Masking and vaccinations may provide help to, but your mask and your vaccination may help your immunocompromised neighbor more. How individuals spend their time in nursing homes or grocery stories modified against their will.
The COVID-19 pandemic reminded us that the person and the community are in tension. This is just not an issue, per se, but a dynamic of life as social creatures with which we must all reckon. At any given moment, individuals and societies need to choose how much freedom to say or constrain. The person is vulnerable to being ignored, exploited, and even destroyed. The community is vulnerable to dissolution into hyperindividualism or stifling hypertrophy into tribalism or bureaucracy, or atrophy into stultifying superficiality. Despite this tension, the person and community are formed by and form one another. There are not any communities without individuals, and no individuals without communities. We as individuals inherit our beliefs from our culture, and we also form our culture through our believing.
One such belief is that we’d find a way to free ourselves from the human condition. McKenny again: “Modern medicine, with its immense capacities to intervene into and reorder the body, continually holds out the promise of fulfilling this imperative. The imperative is to eliminate suffering and to expand the realm of human selection—briefly, to alleviate the human condition of subjection to the whims of fortune or the bonds of natural necessity.” But we’d like only remember Martin Luther King Jr.’s lament that “we’ve guided missiles and misguided men” to understand that scientific progress doesn’t, and can’t, translate to moral improvement.
We’re at risk of believing that, due to our progress, we are able to handle death more safely than ever before. But we cannot. Safeguards erode before society’s capricious and insatiable desire for access. Restrictions of geography, time, route of ingestion, or diagnosis, slightly than protecting the vulnerable, as an alternative impede the vulnerable from accessing ASE.16-19 Why should anyone be denied the last word relief of ASE? Either suffering is the qualifying criterion, during which case those that cannot autonomously request it are subject to discrimination when it’s denied them, or else autonomy is the qualifying criterion, during which case clinician judgments of suffering (even their authorization) are irrelevant. Why should the offer of ASE stop short in either regard? Should we leave some individuals to languish because of this of a safeguard that claims their lack of autonomy bars them from ASE, or should we disrespect the autonomy of some individuals when clinicians judge their suffering or diagnosis usually are not sufficient to qualify them for ASE? These questions have change into too tempting to depart unanswered without ASE, as countries outside the US broaden access to incorporate children and people with mental illness. Why shouldn’t the US follow within the name of compassion and liberty?
In a tragic irony, though, ASE neither supports autonomy nor does it assuage suffering.
David Velleman articulates the dilemma we create for others once we offer them a selection20:
“Offering someone a substitute for the established order makes two outcomes possible for him, but neither of them is the end result that was possible before. He can now select the established order or select the choice, but he can not have the established order without selecting it. And having the established order by default could have been what was best for him, regardless that selecting the established order is now worst. If I invite you to a banquet, I leave you the probabilities of selecting to come back or selecting to remain away; but I deprive you of something that you simply otherwise would have had—namely, the potential of being absent from my table by default, as you’re on all other evenings. Surely, preferring to simply accept an invite is consistent with wishing you had never received it. These attitudes are consistent because refusing to attend a celebration is a distinct end result from not attending without having to refuse; and even when the previous of those outcomes is worse than attending, the latter should still have been higher. Having decisions can thus deprive certainly one of desirable outcomes whose desirability is determined by their being unchosen.”
What does this must do with ASE? Velleman continues:
“Once an individual is given the selection between life and death, he’ll rightly be perceived because the agent of his own survival. Whereas his existence is ordinarily viewed as a given for him – as a hard and fast condition with which he must cope—formally offering him the choice of euthanasia will cause his existence thereafter to be viewed as his doing.
The issue with this perception is that if others regard you as selecting a state of affairs, they are going to hold you chargeable for it; and in the event that they hold you chargeable for a state of affairs, they will ask you to justify it. Hence if people ever come to treat you as existing by selection, they might expect you to justify your continued existence. In case your every day arrival within the office is interpreted as meaning that you could have once more declined to kill yourself, chances are you’ll feel obliged to reach with a solution to the query ‘Why not?’.”
The situation is more acute than even Velleman describes. The one under such a burden, even in the event that they never face the overt inquiry from others, must nevertheless settle the matter in their very own mind: why am I still attempting to live? Can I give you sufficient reasons? Is society helping me discover a reason to live? The mere offer—even the existence—of ASE forces them out of default territory. Now they must select.
An individual’s decisions are theirs to make, after all, but they select among the many options given to them. Stephen Jenkinson put it this manner: “The culture gives us our ways of dying, gives us the meanings and meaninglessnesses we wring from it, forcing upon us the repertoire for dying.”21 Reflecting on this, I wrote elsewhere22:
“What’s our culture like? What repertoire for dying does it offer us? It’s a culture that glamorizes youth and the untethered autonomy of the person. Aging is the story of losing vitality, control, and dignity—of increasingly burdening our family members and our medical system to look after us until we die. Some have even argued for a “duty to die” of those with chronic illness whose lives are being medically prolonged but who can not deal with themselves. Human dignity, by this reasoning, is just not unconditional. Only the autonomous have it. Those that are depending on others not do, and are subsequently not deserving of our care.”
This exacerbates suffering slightly than relieves it. It adds to the burdens of those that already perceive themselves to be a burden. The desiccated imagination of our modern age doesn’t offer to assist bear this burden; slightly, it offers the reason why some have an obligation to die.23-24
None of this implies we disregard the hopes and desires of the person. The query of suicide, in and of itself, is ancient and different from the questions of whether society should permit it and the medical career underwrite it. The conditions that lead someone to think about suicide require, first, lament. No argument can lead within the face of such suffering. Beyond that, these issues have to be appropriately situated inside a transparent vision of what variety of culture we wish to cultivate, and the risks we wish to avoid.
As an alternative of determining ways to assist people die, what if we devoted our energy to helping them live, even and particularly in the event that they are dying? One subtle shift can be to challenge the assumption that individuals themselves can change into burdens. Nobody’s existence devolves to mere burdensomeness. As an alternative, they themselves are burdened: by illness, by pain, by doubt, by debt, by loneliness, by any variety of things. We should always not affirm their perceived burdensomeness by offering ASE; we must always affirm their dignity by offering to assist them bear their burdens. In so doing, we testify to our shared humanity and our interdependence. We testify to it with our compassion, but not an unbridled compassion that can’t bear suffering and so must eliminate the sufferer. As an alternative, that is compassion accompanied by wisdom. Such wisdom knows the boundaries of the human body and it also knows the boundaries of medical intervention. Such wisdom that knows compassion can drive us to make use of our tools in harmful ways, even while our compassion invigorates wisdom to find modern ways to bear others’ burdens.
“I don’t need to be a burden.” You usually are not. Here, let me provide help to carry that.
Dr Briscoe is an assistant professor at Duke University within the Department of Internal Medicine, Department of Psychiatry and Behavioral Sciences.
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