“We can keep your loved one alive. but we won’t. Even though you think their life is worth living, we do not.”
The first time I helped a hospital convey this type of offensive message to a patient’s family, it deeply humbled me. My service on a hospital medical appropriateness review committee forged charitable respect for alternative viewpoints that now pervades my work to protect patient rights.
Hospital review committees adjudicate medical futility disputes.
I am an international legal and bioethics expert on end-of-life health care conflicts, particularly in hospital intensive care units. These are sometimes called “medical futility” disputes or conflicts regarding “non-beneficial treatment.” I have analyzed the resolution of these conflicts in more than 200 articles. I even run the eponymous Medical Futility Blog. Beyond academic scholarship, I have: written hospital system policies, served as an expert witness, testified before state legislatures, and co-authored professional society guidelines. But none compares to serving on a hospital’s medical appropriateness review committee.
These committees adjudicate a specific type of conflict. Patients in hospital intensive care units almost always lack the capacity to make their own health care decisions. A surrogate must act on their behalf. Sometimes these surrogates request life-sustaining treatment that clinicians deem inappropriate. For example, when the patient is catastrophically critically ill with no chance of recovery, clinicians often determine that the appropriate treatment plan entails forgoing interventions like mechanical ventilation, CPR, and dialysis; and instead focusing on comfort measures only. The interventions at issue are not literally futile; they might possibly keep the patient alive. But clinicians often judge that the burdens of these interventions significantly outweigh the benefits when the patient is permanently unconscious, otherwise has zero (or negative) quality of life, and lacks any prospect of discharge.
In these conflict situations, when surrogates and clinicians disagree, clinicians may refer the case to the hospital’s medical appropriateness review committee, sometimes called an “optimum care committee” or “ethics committee.” In many U.S. states, if this committee agrees with the referring clinician, the clinician may withhold or withdraw life-sustaining treatment even when the surrogate desires. Many hospitals’ review committees adjudicate these medical futility conflicts at least monthly.
The gravity of making life and death decisions for others
Serving on a hospital medical appropriateness review committee for the first time helped me discern two chasmic differences between authoring articles about these committees and working on one. First, merely writing about family-clinician discord kept me safely distant and detached. In contrast, serving on the committee is up-close and personal. Second, this closeness, this “being in the room,” accentuated the monumental stakes and moved me from deliberation to hesitation.
It was jarring to switch roles from counselor to judge. Since committee decisions must be unanimous, my vote mattered. I was no mere advisor. I was a decision maker. I was humbled by the gravity of this role. Since the hospital employed the other six committee members, they voted first. All six supported the referring clinician. It was down to me. If I decided one way, the patient would live. If I decided the other way, the patient would die.
Recognizing the scope of this life-and-death power was a yellow caution flag to exercise it carefully. This case came to the committee because the family had asked the hospital to continue life-sustaining treatment in the face of the patient’s overwhelming and irreversible illness. I would not make that decision for myself or my family. Probably none of the other committee members would either. After all, most bioethics “insiders” find it pointless to sustain mere biological life in a state of permanent unconsciousness with no prospect for recovery. But that is a value-laden judgment for which there is no foundationally correct course of action. That lies beyond the expertise of clinicians and lawyers.
So, we talked to the patient’s family to appreciate why they wanted to continue aggressive treatment deemed inappropriate by the treating clinicians. We needed their involvement and participation to ascertain their rationale. Sometimes surrogates fundamentally ignore or misunderstand the clinical circumstances. Sometimes they fail to make treatment decisions that faithfully represent the patient’s known wishes or best interest. Those are the easy cases. This was not one of them. This case was hard.
The family grasped the situation and was faithful to the patient. They explained their position. Importantly, they did not expound this through cold, dry text in a letter. We met in person. I could see their facial expressions, hear the inflection and intonation of their voices, and observe their gestures. This helped me grasp not only their message but also how earnestly, if not ardently, the family regarded it. They effectively illuminated how their culture and religion commanded the disputed treatment. In short, they were not wrong. Their values were different from ours.
Penetrating impact on professional and personal strategies
Most of my publishing, speaking, and consulting have focused on assuring value-congruent treatment. I have worked to assure both that patients get treatments they want and that they avoid treatments they do not want. So much health care is preference-sensitive. Science and medicine alone cannot determine the best treatment option for you or me. We must look beyond biology to biography.
Hospital medical appropriateness review committees serve an important function. Hospitals cannot and should not accommodate any surrogate demand. But the hospital’s burden of proof and persuasion is formidable. I have always started with a strong presumption that clinicians should defer to the value judgments of patients and their surrogates. I demanded clear and convincing evidence to rebut that presumption. Serving on a hospital’s medical appropriateness review committee has taught me to even better respect diverse values. I now demand an even more conclusively cogent justification, if not Herculean, before overriding surrogate decisions.
Thaddeus Mason Pope is an attorney.
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