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.