A recent case heard by the Supreme Court of the Netherlands found that “a doctor had not acted improperly when he euthanized a 74-year-old woman with advanced dementia, even though the woman had to be repeatedly sedated and physically restrained during the procedure.” The woman had previously set out in her advanced directives a request for such a procedure, instead of being sent to a nursing home.
An essay in the Journal of the American Medical Association by physician and bioethicist Daniel Sulmasy argues that advanced directed are necessary but not sufficient for dying well. Indeed, there is something that such directives will never be able to capture or predict. Teaching and expecting the law to protect the freedom to have a good death, as a part of the ethics intrinsic to medicine and the care of one’s own soul and the souls of others, is essential work. Wesley J. Smith writes in First Things that the conscience rights of Catholic health-care providers is under increasing attack, citing a rather different perspective in the New England Journal of Medicine. Its authors target institutional-level conscience-based objections. They write:
Expansion of conscience regulations exacerbates an existing problem: the power of a hospital to allow its institutional beliefs or morals to undermine individual rights and access. If a hospital can refuse to offer legally permitted services, what types of services could be refused? Certain medications? Dialysis? Transplants? Hospitals could severely restrict treatment choices for patients and families and could discriminate against vulnerable populations.
It’s an expanding “who watches the watchers” scenario. Who gets to decide the rational basis for morality? And why? Individual choice is undermined, on the one hand, in the name of a perfectly rational, emotionally neutral system. On the other hand, having an ethical code or beliefs rationally grounded in perennial truths about human nature, which do nonetheless prevent others from purported exercises of “freedom,” is attacked in the name of a perfectly free, value-neutral system.
Sulmasy’s essay suggests poetry to the algorithm-bound clinician as perhaps the closest thing to the stark reminder of the scriptural and liturgical of realities transcending human technological control of human life. He points to Eliot’s “Prufrock,” but his essay reminded me of another passage from T. S. Eliot, specifically the following lines in “Choruses from the Rock”:
They constantly try to escape
From the darkness outside and within
By dreaming of systems so perfect that no one will need to be good.
This expresses what Sulmasy says about advanced directives and related practices: “Algorithms and prediction instruments, ironically, exercise tyranny over the true freedom of moral agency that we claim to be respecting in our patients. They trap patients in their own pasts.”
The “system” constituted by an algorithm, or a heuristic for decision-making, or even a written civil law is always abstracted or removed from the concrete context where a choice for the good must be made, or the truth seen. When the time comes to apply the abstract rule, the law made for general cases, or the plan made ahead of time, the concrete details of time, place, and context may present unforeseen difficulties. (This is why many philosophers and jurists have argued that those responsible to act can act against the letter of the law, even if the law is a good one, in those cases where following such a law would lead to an evil result.)
Sulmasy shows the need for human goodness in those concrete circumstances when he writes “Yet none of these [data, planning, documents] can overcome the existential reality of death or the uncertainty inherent in ethical decision-making.” Our human deaths are of their nature incommensurate with even the most helpful and advanced of plans. Hence the need for prudence and wisdom, because the depths of goodness and truth that fulfill our humanity measure us—our systems cannot measure them.
The ancient Greek philosopher Plato argued that the best human life is lived in preparation for dying well. Sulmasy’s essay is excellent for reminding us that fully human preparation for death cannot be fully systematized.