Then my daughter was born a month early and they called her premature, which was absurd to me. I was in my forties and a father for the first time, so to consider her early made no sense on my watch.
Recently, premature threw me another curve. I’ve been reading and rereading a lengthy Lancet Oncology Commission report, as background for the Community Ethics Committee’s study of medical futility.
The Lancet study (Delivering Affordable Care in High-Income Countries, September/October 2011) shines light on aspects of end-of-life care that can derail honest dialogue -- notably cost (economic and otherwise) and rationing. This is the stuff of “death panel” paranoia. But delivering health care that society and individuals can afford is so urgent that any honest assessment must take them into account.
Not all medically futile cases that descend into intractable dispute between doctor and patient/family can be traced to a moral gap between science and religious belief, but many can. Which is why this phrase in the Lancet report caught my eye: “the worldwide cost of cancer due to premature death.”
Simply agreeing on a definition of “premature death” might itself be futile. Is it simply life that ends earlier than expected from other than natural causes? Premature death has meaning in a medical sense, but what is its meaning in a religious sense? And do the definitions share any connective tissue whatsoever?
In attempting to understand medical futility, I studied (mostly through newspaper and online reporting) the case of Samuel Golubchuk, an elderly man in Winnipeg, Manitoba, who had suffered serious brain damage and whose condition was diagnosed as irreversible. Lacking therapeutic or curative options, and questioning the continuance of more than comfort care, ICU doctors wanted him removed from life support.
Golubchuk was beyond speaking for himself, but his adult children argued that to discontinue life support would go against the man’s lifelong religious beliefs as an Orthodox Jew -- specifically, the teaching against hastening death. But in that tragic case, which over time resulted in half the physicians on a small ICU staff resigning rather than continue treatment they considered to be torture, it seems never to have come up that Judaism also teaches against prolonging the dying process.
Many religious believe time of death “is written” -- that God knows when death will occur, and humans shouldn’t interfere. If that is true, how can anyone know when medical life support is appropriate, or when it merely prolongs dying?
Cases such as Golubchuk’s are relatively rare, but they are enormously harmful to families and caregivers in dispute -- not to mention the unresponsive patient made to endure the “care.” The disputes tend to be resolved only by the patient’s death, as was the case with Golubchuk.
It pained Golubchuk’s attending ICU physician that the family’s religion-based demand to continue life-saving efforts seemed to have no regard for prognosis. The physician’s options became to “do harm,” or to resign.
There is nothing premature about the Lancet Oncology report’s main point: that the cost of cancer care is unsustainable. It would seem modern success at cure and care is making us more selective with both.
More on the Lancet report will follow.
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Yes, to argue against discontinuing ineffective (and harmful) treatment on the basis that we ought not to interfere in some divinely ordained time of death seems unreasonable. If this kind of principle were consistently adopted, some bizarre, and clearly unethical, consequences would follow.
ReplyDeleteWe don’t give enough attention, and imagination, to the following question: what kind of harm are we forcing nurses to do to patients, in such cases, when they would rather resign from a profession they love than face one more day?
Response from CEC member Herman Blumberg:
ReplyDeleteIt is not my purpose to argue on behalf of Mr. Golubchuk's family in their demand that life-sustaining measures for their father be continued. But if we are to respect a family's genuine, long-held religious or cultural base for decision making then we must acknowledge the following:
1) While technology was keeping the man alive, once introduced, cessation of life-sustaining mechanical respiration or artificial nutrition are acts which hasten death. That's fact. One can argue that hastening death is O.K., but we must respect those who differ. Some Jewish legal authorities will allowing withholding of such procedures. Perhaps the medical staff could have avoided this crisis by anticipating the problem, working with the family to consider not introducing "extraordinary" measures. This is one of the tasks of a Palliative Care team.
2) If the physicians felt that the patient was being tortured, chances are their arsenal of pain medication could have alleviated the problem. Pain control is within the medical staff's province. The doctors should insist on adequate palliation, the comfort of the patient The "quality of life" standard belongs to the family.
3) Another way to avoid these "intractable disputes" is to encourage the use of an Advanced Directive and the candid conversation that the document generates. Even within Orthodox Jewish circles, the presence of an Advanced Directive in which the patient spells out in detail what treatment is wanted or is to be withheld can be helpful in guiding families and their physicians through difficult decisions.