Proposed Futile Care Hospital Policy Would Allow Committees to Overrule Patient Advance Directives

For years we have been told bioethics promotes patient autonomy. Want to refuse care even though you die, and the health care team disagrees? AUTONOMY! Want assisted suicide? AUTONOMY! Want to use every novel IVF procedure available to have a biologically related child? AUTONOMY! You want your life extended by intensive care and you so state in a living will or other advance directive? AUTONOMY–NOT!

My nearly twenty years as a critic of bioethics has convinced me that the field is not really about autonomy. Rather, it is about engineering proper outcomes as the reigning bioethical view determines them to be. If autonomy gets that accomplished, great. Bioethics loves “choice.” If not, well, so much for autonomy.

Thus, a paper about to be published in the Journal of Law and Medicine promoting a model futile care hospital protocol argues that patients and surrogates be made aware that the hospital has ultimate decision making authority: From Addressing Inappropriate Care Provision at the End of Life: A Policy Proposal for Hospitals:”

To provide for substantive reform, any proposed public policy or internal health care entity effort should address how best to:…
4. Ensure that the patient or their surrogate understands the physician and health care facility have decision-making options regarding continuation of treatment (my emphasis).
5. Facilitate understanding, either through ethics committees, or special communication teams, between the patient/surrogate and the physician/health care facility regarding how the patient’s treatment decisions are made and how the health care facility manages patients in end-of-life-care situations.

In the end, #s 4 and 5 above give final power to the hospital rather than the surrogate or patient. And make no mistake, this is about money:

Medically futile care creates challenges for hospitals attempting to provide effective and efficient care in a world of limited resources.

And it presumes to dictate that extending life–when that is what the patient/surrogates want–is not a medical benefit:

Further, although not all end-of-life care is inappropriate, some end-of-life medical treatment can be futile because the treatment will not result in any benefit for the patient and in some cases the patient would not have sought out such treatment had the patient been physically able to make the determination.

Don’t be fooled by language about treatment the patient wouldn’t want. The model policy would permit ethics committees to overrule a patient’s advance directive. Here’s what the article says should happen if the medical team or hospital ethics committee disagrees with a patient’s advance directive wanting care. If an informal process doesn’t achieve agreement, a formal ethics committee hearing is to be commenced:

• The patient or proxy should be provided at least 24 hours notice of the meeting of the committee.
• The patient’s physician should attend the meeting to explain the treatment options, with the patient/proxy in attendance, but then should be excused in order for the committee to discuss the particulars with the patient/proxy. The patient/proxy shall be permitted to ask questions of the physician during this time.
• The patient/proxy and the physician should be provided with the conclusions of the ethics committee, if a decision is reached…

Notice there is no provision for a formal record, no formal due process, no requirement to maintain accurate records of what was discussed at the meeting, no requirement for the committee to set forth its reasons, etc. In other words, an opaque and secretive process.

And if the family disagrees with the bioethics committee’s dictat?

If the ethics committee conclusions are consistent with the treating physician’s request, and the patient/proxy continues to disagree with such a determination, the physician must relinquish his or her responsibility for the patient’s care, and/or assist in the transfer of the patient to a physician who is willing to comply with the patient’s wishes, or, if required by law, must assist with the patient’s transfer to an alternative care setting within the health care facility or to a different facility.

And what happens if no other facility will take the patient? Hospitals increasingly either sue or refuse treatment unless directed otherwise by a court–meaning the patient surrogate has to sue.

Quality of life futile care theory imposes bioethical/hospital/doctor subjective values on patients and their families. Care isn’t deemed futile because it doesn’t work, but because it does. Hence, it is the patient being declared futile.

Good communication is important and I support ethics committees which work diligently to help people work through difficult circumstances. But they should not be given ultimate decision making authority. But no internal process should be allowed to make life and death decisions that overrule end-of-life desires of patients and their duly appointed surrogates. And this is particularly true, given the general unequal power and daunting institutional culture that can permeate hospital ethics committee deliberations.

Peter Singer is a bioethicist.

From Wikipedia: Peter Albert David Singer (born 6 July 1946) is an Australian philosopher who is the Ira W. DeCamp Professor of Bioethics at Princeton University and Laureate Professor at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne. He specialises in applied ethics and approaches ethical issues from a secular, preference utilitarian perspective.

He has served, on two occasions, as chair of philosophy at Monash University, where he founded its Centre for Human Bioethics. In 1996, he ran unsuccessfully as a Green candidate for the Australian Senate. In 2004, he was recognised as the Australian Humanist of the Year by the Council of Australian Humanist Societies. He has been voted one of Australia's ten most influential public intellectuals.[1] Singer serves on the Advisory Board of Incentives for Global Health, the NGO formed to develop the Health Impact Fund proposal.

Outside academic circles, Singer is best known for his book Animal Liberation, widely regarded as the touchstone of the animal liberation movement. Not all members of the animal liberation movement share this view, and Singer himself has said the media overstates his status. His views on that and other issues in bioethics have attracted attention and a degree of controversy..

Abortion, euthanasia and infanticide

Consistent with his general ethical theory, Singer holds that the right to life is intrinsically tied to a being's capacity to hold preferences, which in turn is intrinsically tied to a being's capacity to feel pain and pleasure. In his view, the central argument against abortion may be stated as the following syllogism:

It is wrong to kill an innocent human being.

A human fetus is an innocent human being.

Therefore it is wrong to kill a human fetus.[15]

In his book Rethinking Life and Death, as well as in Practical Ethics, Singer asserts that, if we take the premises at face value, the argument is deductively valid. Singer comments that defenders of abortion attack the second premise, suggesting that the fetus becomes a "human" or "alive" at some point after conception; however, Singer argues that human development is a gradual process, that it is nearly impossible to mark a particular moment in time as the moment at which human life begins.

Singer's argument for abortion differs from many other proponents of abortion; rather than attacking the second premise of the anti-abortion argument, Singer attacks the first premise, denying that it is necessarily wrong to take innocent human life:

[The argument that a fetus is not alive] is a resort to a convenient fiction that turns an evidently living being into one that legally is not alive. Instead of accepting such fictions, we should recognise that the fact that a being is human, and alive, does not in itself tell us whether it is wrong to take that being's life.[16]

Singer states that arguments for or against abortion should be based on utilitarian calculation which weighs the preferences of a woman against the preferences of the fetus. In his view a preference is anything sought to be obtained or avoided; all forms of benefit or harm caused to a being correspond directly with the satisfaction or frustration of one or more of its preferences. Since a capacity to experience the sensations of suffering or satisfaction is a prerequisite to having any preferences at all, and a fetus, at least up to around eighteen weeks, says Singer, has no capacity to suffer or feel satisfaction, it is not possible for such a fetus to hold any preferences at all. In a utilitarian calculation, there is nothing to weigh against a woman's preferences to have an abortion; therefore, abortion is morally permissible.

Similar to his argument for abortion, Singer argues that newborns lack the essential characteristics of personhood—"rationality, autonomy, and self-consciousness"[17]—and therefore "killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living."[18] Singer classifies euthanasia as voluntary, involuntary, or non-voluntary. Voluntary euthanasia is that with the consent of the subject. Singer's book Rethinking Life and Death: The Collapse of Our Traditional Ethics offers further examination of the ethical dilemmas concerning the advances of medicine. He covers the value of human life and quality of life ethics in addition to abortion and other controversial ethical questions.

Singer has experienced the complexities of some of these questions in his own life. His mother had Alzheimer's disease. He said, "I think this has made me see how the issues of someone with these kinds of problems are really very difficult".[19] In an interview with Ronald Bailey, published in December 2000, he explained that his sister shares the responsibility of making decisions about his mother. He did say that, if he were solely responsible, his mother might not continue to live.[20] [edit]

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I apologize for the length of this excerpt, but I hope that the convenience of reading it here may make a difference.

I see this situation EVERY DAY!!!!

The patient, should he/she or their family be able to pay for it (via insurance or cash), should be able to avail themselves of EVERY care measure or procedure they desire.

However, if the taxpayer is paying for it (medicare or medicaid) cost/benefit analysis MUST have a place in care decisions.

Real case: the other day I had a 88 y/o medicare patient that had been confined for the last 6 years in an Alzheimer’s unit in a nursing home, bedbound for the last year. Patient doesn’t know who she is or where she is. Her family, other than an elderly sister, has nothing to do with her. She fell while trying to get up at the nursing home and broke her hip and badly shattered her shoulder.

It was determined that the shoulder could not be repaired, but surgery was done to pin the hip. This surgery costs upwards of $25K. Tax dollars! Then, she was sent back to the same nursing home, bedbound, on hospice care.

Can anyone really justify the expenditure on surgery? Come on! I mean, there is no reason this lady should be in pain, but why fix a hip she’ll never use, and hasn’t used - in years!

I don’t want any part of telling someone “Sorry, but you’re not worth saving.” but there is a point where some care IS “futile” and we the taxpayer should not be funding every individual’s desire to stay with us a few extra hours or days. And, far more often than not, it is a guilty family member, not the patient, that is pushing for such.

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