Instead of figuring out ways to help people die, what if we devoted our energy to helping them live, even and especially if they are dying?
FROM OUR READERS
This article is in response to the series, “The Case for Medical Aid in Dying” by Douglas W. Heinrichs, MD.
“I don’t want to be a burden.”
Some people say it as a matter of fact. Others whisper it through tears or mumble it in fear. No matter how it is said, the words pull at my sleeve, turning me away from my typical line of questioning. I slow down. What keeps you going? What else worries you? Are you glad to be alive even in the midst of all this?
Self-perceived burdensomeness is a facet of suffering that afflicts people with chronic illness, pain, and disability. It is also associated with suicidal ideation.1-4 What does it mean to live well when such a stark challenge confronts people in their suffering? As if to shrug, society offers a different way. Losing autonomy and dignity, and becoming a burden, are among the 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 will using the terms assisted suicide and euthanasia, ASE, for the sake of clarity and fidelity), Douglas W. Heinrichs, MD, attempts to both submit a positive argument in favor of ASE as well as disarm common objections.7-10 There are at least 2 alarms he fails to heed.
First, the use of death is unwieldy and harmful.
Stumbling from the ashes of World War II, nations were forced to reckon with how they could rebuild and live together again. As a result, the mid-20th century saw the creation of the nascent field of “bioethics.” This took shape in the early forms 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 happen again,” even when, sadly, abuse (albeit not of the same magnitude) did continue to happen. Nevertheless, the landscape of medicine and medical science is nothing like the early 20th century, thanks to the hard work of many people who laid these ethical and legal foundations.
Over that same period, advances in medical science wrought near-miraculous outcomes for human health. Ironically, 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 continue its abolition of human suffering unabated was joined by the suspicion that the human body could be enslaved to that technology (eg, unable to be extubated) or diminished in such a way that it would not be allowed the merciful release of death. This tension coalesced both in the bioethical literature and in the American courts around a so-called “right to die,” codifying a patient’s right to decline life-sustaining therapies.
This course of history could not 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 effort of the modern subject to bring the external world under his power ends with the power of technology to recoil back and destroy or radically refashion the very subject whose power it is.”12 Neil Postman agreed, remarking that “technological change is not additive; it’s ecological,” meaning that the ventilator, for example, did not just “add something; it [changed] everything” about how we practice medicine.13 Things like the automobile, the credit card, and the internet, more than being mere tools, have shaped the way we see our world, ourselves, and each other. So, too, with other paradigm shifting medical technologies like antipsychotics, transplant medicine, the defibrillator, and, as I argue, ASE.
Technologies carry their own promises into our culture. How does our culture respond? Philosophers like Postman, Jacques Ellul, and others raised concerns that the 20th century was 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 same. But if forty-nine shells go off in some remote place and the fiftieth goes off in the midst of a platoon of soldiers, it cannot be maintained that the results are identical. A relation has been established which entails a change. To assess this change, it is not the intrinsic character of the explosion which must be examined, but rather its relation to the environment.”
What is the relationship 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 not others? Ellul goes on to describe the world in which we had been living in the mid-20th century and certainly inhabit more fully now:
“Technique has penetrated the deepest recesses of the human being. The machine tends not only to create a new human environment, but also to modify man’s very essence. The milieu in which he lives is no longer his. He must adapt himself, as though the world were new, 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; instead, 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 is fragmented by all the forces of the modern world.”
By “technique,” Ellul meant all those forces that bend toward efficiency. Once this efficiency mindset is introduced into a society, it goes everywhere, as Ellul argued: “Technique cannot be otherwise than totalitarian. It can be truly efficient and scientific only if it absorbs an enormous number of phenomena and brings into play the maximum of data. In order to coordinate and exploit synthetically, technique must be brought to bear on the great masses in every area. But the existence of technique in every area leads to monopoly.” So, it is not enough that technique helps us be more efficient at work, for example; now we must optimize our health, families, vacations, cooking, and so on.
Postman captured the essence of Ellul’s description in the word “Technopoly,” writing that the seeds of Technopoly were first cast in the early 20th century15:
“...The Principles of Scientific Management, published in 1911, contains the first explicit and formal outline of the assumptions of the thought-world of Technopoly. These include the beliefs that primary, if not the only, goal of human labor and thought is efficiency; that technical calculation is in all respects superior to human judgment; that in fact human judgment cannot be trusted, because it is plagued by laxity, ambiguity, and unnecessary complexity; that subjectivity is an obstacle to clear thinking; that what cannot be measured either does not exist or is of no value; and that the affairs of citizens are best guided and conducted by experts.”
A lesson that Technopoly teaches people is that “we are at our best when acting like machines, and that in significant ways machines may be trusted to act as our surrogates. Among the implications of these beliefs is a loss of confidence in human judgment and subjectivity. We have devalued the singular human capacity to see things whole in all their psychic, emotional and moral dimensions, and we have replaced this with faith in 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 both 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 not strong enough, independent enough, wealthy enough, needed enough to continue living. Chronic and serious illness, suffering, and dying are not efficient. They threaten our dignity because they threaten our fantasy of autonomy. The utilitarian calculation is not in the favor of those who are too weak to sustain the facade of independence.
In such a culture, the use of death as a medical instrument is unwieldy and harmful. It fails to account for how monopolized by efficiency our culture has become. 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 who use it, but also to deform the culture that permits and even promotes it.
A Luddite could misuse these concerns as an argument against any technological progress. Handled in a measured way, though, they should give us pause before taking up a new practice that has a potential for foreseen and widespread change (let alone unforeseen change). A review of the history of death-as-instrument is beyond the scope of this essay, but it should be left to proponents of ASE to establish whether there has ever been a safe use of death (eg, execution, assassination, war, suicide) that did not result in direct harm as well as 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 necessary to fortify moral barriers that would resist even the thought of repeating the terrible crimes of the early and mid-20th century. For decades now, clinicians have told their patients, “It is your choice. You decide. We are respecting your autonomy.” For the vast majority of medical decisions, that is critical. It helped to supplant the paternalism that, while not as egregious as Nazi medicine or American forced sterilization, certainly failed to respect patients as individuals.
Into that bioethical milieu arose a pandemic that has spanned nearly 3 years and claimed millions of lives. Suddenly, decisions are more complex: it is no longer just “your choice” and “whatever you decide, we respect your autonomy.” Now people need to consider others, even the weakest in society. Masking and vaccinations may help you, but your mask and your vaccination may help your immunocompromised neighbor more. How individuals spend their time in nursing homes or grocery stories changed against their will.
The COVID-19 pandemic reminded us that the individual and the community are in tension. This is not a problem, 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 decide how much freedom to assert or constrain. The individual is at risk of being overlooked, exploited, or even destroyed. The community is at risk of dissolution into hyperindividualism or stifling hypertrophy into tribalism or bureaucracy, or atrophy into stultifying superficiality. Despite this tension, the individual and community are formed by and form each other. There are no 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 might be able 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 choice—in short, to relieve the human condition of subjection to the whims of fortune or the bonds of natural necessity.” But we need only remember Martin Luther King Jr.’s lament that “we have guided missiles and misguided men” to realize that scientific progress does not, and cannot, translate to moral improvement.
We are in danger of believing that, because of our progress, we can 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, rather than protecting the vulnerable, instead impede the vulnerable from accessing ASE.16-19 Why should anyone be denied the ultimate relief of ASE? Either suffering is the qualifying criterion, in which case those who cannot autonomously request it are subject to discrimination when it is denied them, or else autonomy is the qualifying criterion, in 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 as a result 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 are not sufficient to qualify them for ASE? These questions have become too tempting to leave unanswered without ASE, as countries outside the United States broaden access to include children and those with mental illness. Why shouldn’t the United States follow in 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 when we offer them a choice20:
“Offering someone an alternative to the status quo makes two outcomes possible for him, but neither of them is the outcome that was possible before. He can now choose the status quo or choose the alternative, but he can no longer have the status quo without choosing it. And having the status quo by default may have been what was best for him, even though choosing the status quo is now worst. If I invite you to a dinner party, I leave you the possibilities of choosing to come or choosing to stay away; but I deprive you of something that you otherwise would have had—namely, the possibility of being absent from my table by default, as you are on all other evenings. Surely, preferring to accept an invitation is consistent with wishing you had never received it. These attitudes are consistent because refusing to attend a party is a different outcome from not attending without having to refuse; and even if the former of these outcomes is worse than attending, the latter may still have been better. Having choices can thus deprive one of desirable outcomes whose desirability depends on their being unchosen.”
What does this have to do with ASE? Velleman continues:
“Once a person is given the choice between life and death, he will rightly be perceived as the agent of his own survival. Whereas his existence is ordinarily viewed as a given for him - as a fixed condition with which he must cope—formally offering him the option of euthanasia will cause his existence thereafter to be viewed as his doing.
The problem with this perception is that if others regard you as choosing a state of affairs, they will hold you responsible for it; and if they hold you responsible for a state of affairs, they can ask you to justify it. Hence if people ever come to regard you as existing by choice, they may expect you to justify your continued existence. If your daily arrival in the office is interpreted as meaning that you have once again declined to kill yourself, you may feel obliged to arrive with an answer to the question 'Why not?'.”
The situation is more acute than even Velleman describes. The one under such a burden, even if they never face the overt inquiry from others, must nevertheless settle the matter in their own mind: why am I still trying to live? Can I come up with sufficient reasons? Is society helping me find a reason to live? The mere offer—even the existence—of ASE forces them out of default territory. Now they must choose.
A person’s choices are theirs to make, of course, but they choose among the options given to them. Stephen Jenkinson put it this way: “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 is our culture like? What repertoire for dying does it offer us? It is a culture that glamorizes youth and the untethered autonomy of the individual. Aging is the story of losing vitality, control, and dignity—of increasingly burdening our loved ones and our medical system to care for 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 no longer take care of themselves. Human dignity, by this reasoning, is not unconditional. Only the autonomous have it. Those who are dependent on others no longer do, and are therefore no longer deserving of our care.”
This exacerbates suffering rather than relieves it. It adds to the burdens of those who already perceive themselves to be a burden. The desiccated imagination of our modern age does not offer to help bear this burden; rather, it offers reasons why some have a duty to die.23-24
None of this means we disregard the hopes and wishes of the individual. The question of suicide, in and of itself, is ancient and different from the questions of whether society should permit it and the medical profession underwrite it. The conditions that lead someone to consider suicide require, first, lament. No argument can lead in the face of such suffering. Beyond that, these issues need to be appropriately situated within a clear vision of what type of culture we want to cultivate, and the dangers we want to avoid.
Instead of figuring out ways to help people die, what if we devoted our energy to helping them live, even and especially if they are dying? One subtle shift would be to challenge the belief that individuals themselves can become burdens. No person’s existence devolves to mere burdensomeness. Instead, they themselves are burdened: by illness, by pain, by doubt, by debt, by loneliness, by any number of things. We should not affirm their perceived burdensomeness by offering ASE; we should affirm their dignity by offering to help 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 cannot bear suffering and so must eliminate the sufferer. Instead, this is compassion accompanied by wisdom. Such wisdom knows the limits of the human body and it also knows the limits of medical intervention. Such wisdom that knows compassion can drive us to use our tools in harmful ways, even while our compassion invigorates wisdom to discover innovative ways to bear others’ burdens.
“I don’t want to be a burden.” You are not. Here, let me help you carry that.
Dr Briscoe is an assistant professor at Duke University in the Department of Internal Medicine, Department of Psychiatry and Behavioral Sciences.
1. Joiner TE, Pettit JW, Walker RL, et al. Perceived burdensomeness and suicidality: two studies on the suicide notes of those attempting and those completing suicide. Journal of Social and Clinical Psychology. 2002;21(5):531-545.
2. Kanzler KE, Bryan CJ, McGeary DD, Morrow CE. Suicidal ideation and perceived burdensomeness in patients with chronic pain. Pain Pract. 2012;12(8):602-609.
3. Gudat H, Ohnsorge K, Streeck N, Rehmann-Sutter C. How palliative care patients’ feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families. Bioethics. 2019;33(4):421-430.
4. Wilson KG, Kowal J, Caird SM, et al. Self-perceived burden, perceived burdensomeness, and suicidal ideation in patients with chronic pain. Can J Pain. 2017;1(1):127-136.
5. First Annual Report on Medical Assistance in Dying in Canada. 2019. Accessed December 19, 2022. https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying-annual-report-2019/maid-annual-report-eng.pdf
6. Oregon Health Authority. Oregon Death with Dignity Act: 2021 Data Summary. 2021. Accessed December 19, 2022. https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/ar-index.aspx
7. Reed PA. Against recategorizing physician-assisted suicide. Public Aff Q. 2020;34(1):50-71.
8. Heinrichs DW. The case for medical aid in dying: part 1. Psychiatric Times. August 23, 2022. https://www.psychiatrictimes.com/view/the-case-for-medical-aid-in-dying-part-1
9. Heinrichs DW. The case for medical aid in dying: part 2. Psychiatric Times. August 30, 2022. https://www.psychiatrictimes.com/view/the-case-for-medical-aid-in-dying-part-2
10. Heinrichs DW. The case for medical aid in dying: part 3. Psychiatric Times. September 6, 2022. https://www.psychiatrictimes.com/view/the-case-for-medical-aid-in-dying-part-3
11. Baker R. How should students learn about contemporary implications of health professionals’ roles in the Holocaust? AMA J Ethics. 2021;23(1):E31-37.
12. McKenny G. To Relieve the Human Condition. State University of New York Press; 1997.
13. Postman N. Five things we need to know about technological change. March 28,1998. Accessed December 19, 2022. https://web.cs.ucdavis.edu/~rogaway/classes/188/materials/postman.pdf
14. Ellul J. The Technological Society. Random House; 1967.
15. Postman N. Technopoly: The Surrender of Culture to Technology. Vintage; 1993.
16. Span P. For terminal patients, the barrier to aid in dying can be a state line. The New York Times. November 13, 2021. Accessed December 19, 2022. https://www.nytimes.com/2021/11/13/health/death-dying-dignity.html
17. Johnson G. Oregon ends residency rule for Death with Dignity law. Oregon Public Broadcasting. March 28, 2022. Accessed December 19, 2022. https://www.opb.org/article/2022/03/28/oregon-ends-residency-rule-for-medically-assisted-suicide/
18. Wolfson BJ. New California law eases aid-in-dying process. December 2, 2021. Accessed December 19, 2022. https://californiahealthline.org/news/article/new-california-law-eases-aid-in-dying-process/
19. Steinbock B. Physician-assisted death and severe, treatment-resistant depression. Hastings Cent Rep. 2017;47(5):30-42.
20. Velleman JD. Against the right to die. J Med Philos. 1992;17(6):665-681.
21. Jenkinson S. Die Wise: A Manifesto for Sanity and Soul. North Atlantic Books; 2015.
22. Briscoe J. Dying, but not alone. The New Atlantis. 2021. Accessed December 19, 2022. https://www.thenewatlantis.com/publications/dying-but-not-alone
23. Hardwig J. Is there a duty to die? Hastings Cent Rep. 1997;27(2):34-42.
24. Cooley DR. A Kantian moral duty for the soon-to-be demented to commit suicide. Am J Bioeth. 2007;7(6):37-44.