When you put it like that, this can only mean one of two things: suicide or murder. For most of us in medicine, the very idea of “planned death” seems safely outside our purview. After all, the bulk of medicine is concerned with staving off death. And the very nature of death’s uncertain timing enables practitioners of everyday medicine to take refuge in its mystery.
When necessary, we prognosticate. But we do so with many caveats and often much hand-waving. The timing of death is a function of physiological decline, the exact rate of which we can never quite know, and is, some might say, “in God’s hands.” We estimate the likelihood of our patients’ five-year, one-year, or six-month survival, knowing that, in the end, this is something over which we have little control.
Except when we do.
With increasing access to technology, including mechanical ventilators, renal replacement, AICDs and LVADs, the “death sentence” diagnoses of 50 years ago are today’s chronic diseases. The prevalence of life-extending technologies now requires us to consider when these machines should be discontinued. We’re now, by necessity — and often in response to patients’ and families’ requests — increasingly concerned with planning death.
Add to this the legalization of physician-assisted death; the requests from patients who desire medical support as they pursue the voluntary stopping of eating and drinking (VSED); and the acceptance of palliative sedation in the care of terminally ill patients. Then it’s clear that once efforts at deflecting death fail, we are no longer simply witnessing and managing the symptoms of dying. We now have agency in death’s timing. We have a role to play. And we have responsibilities.
In some cases, that role is both clear and fairly well-rehearsed. Ever since Karen Ann Quinlan’s parents were granted their request to stop the ventilator believed to be keeping their daughter alive, the responsibility to discontinue ventilator support in response to patients’ or surrogates’ requests has been widely accepted. Every day in ICUs across the country, life support is stopped, and members of the ICU team tasked with this responsibility regard it as part of their jobs.
Once a patient has been ventilator-dependent for many months or years, though, things can get murky. Consider the 42-year old who’s adapted to a new life since a baseball accident at 18 left him quadriplegic and vent-dependent, who now decides he’s “done,” and asks his doctors for help in stopping his ventilator: is he suicidal? Does he even have a terminal illness? And what of the medical staff who plan the details of transporting him to a location where his ventilator can be discontinued, arrange their calendars for the day he will die and administer medications in advance of stopping the vent? Are they participants in something that, even if legally and ethically distinct from physician-assisted death, still might feel awfully similar? Suddenly the uncertain timing of death is not quite so uncertain, and the comfort of knowing that “it’s in God’s hands” is replaced by the physician’s understanding that it’s also in hers.
Cardiologists, long concerned almost exclusively with prolonging life, now face similar scenarios, and many look to ethical frameworks employed by nephrologists and pulmonologists who discontinue dialysis and ventilator support when they’re now asked to consider deactivating AICDs, pacemakers, and LVADs. A machine’s a machine, after all. Stopping the pacemaker, upon request, of a frail but otherwise healthy 87-year old who spent the weekend preparing a final meal for her family is pretty much the same as discontinuing a ventilator in an ICU patient, isn’t it? And the fact that you ran into her at the store when she was shopping for that meal’s ingredients three days before her planned death doesn’t really change things, does it?
These are, comparatively, straightforward cases where deference to patient autonomy is well-established. What guidance is there for the PCP who’s asked by her savvy 72-year old patient, recently diagnosed with cognitive decline, to promise that she’ll support him medically when he decides to stop eating and drinking?
How should the oncologist who prescribed medications under his state’s physician-assisted death law respond to the queries of the husband of the patient who has the medications, but now might be too confused to understand the consequences of ingesting them?
How does the employed physician support his patient who requests legal aid-in-dying when the organization he works for doesn’t support (or even forbids) participation? And how might the palliative medicine physician respond to the request for sedation from a terminally-ill patient with unbearable anxiety and dread, knowing that this will likely end in the patient’s death sooner than would otherwise occur?
It seems we are, after all, caught up with the concerns of “planned death.”
So prevalent are these quandaries in our daily work that the University of Washington is convening a national conference on the topic in September. It’s a critical discussion to have. As clear as our roles are when acting on our commitments to support our patients’ lives, we have a murkier understanding of our agency, roles, and responsibilities when death is planned. Eschewing these responsibilities in the belief that this is the purview of others — end-of-life care specialists, ethicists, or even nature, or God — is clearly unsustainable.
As medical technology, law, and ethics evolve, so too must our understanding and discussion of the considerations that surface when the mysteries of death give way to an acknowledgment of the control we often have over its timing.
Tom Schaaf is president, Washington State Medical Association. Hope Wechkin is medical director, EvergreenHealth Hospice and Palliative Care and course chair, At the End of Life: Agency, Role and Responsibilities of the Physician/Advanced Practitioner.
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