COMMENTARY

When Patients Refuse Lifesaving Care

Andrew N. Wilner, MD; Ronald W. Pies, MD

Disclosures

June 09, 2017

The Legality of Refusing Lifesaving Treatment

Dr Pies: Even more pressing, we need to explore the degree to which the patient understands the consequences of his actions and nonactions. Does he fully understand that he almost certainly will die in the very near future from the complication of AIDS if he does not begin antiretroviral therapy soon? Or does he merely say, in the abstract, that he would "rather die than confess to having the disease"?

If the patient is judged mentally competent to make medical care decisions, then his wish to decline antiretroviral therapy must be respected.

If the patient is judged mentally competent to make medical care decisions, then his wish to decline antiretroviral therapy must be respected. The right of a mentally competent adult to refuse even lifesaving treatment has been explicitly recognized by the US Supreme Court, in Cruzan v. Director, Mo. Dept. of Health, decided in 1990.

On the other hand, if the patient appears to be mentally incompetent to make medical care decisions, on the basis of a thorough psychiatric/forensic evaluation, then the hospital may need to seek legal guardianship so that some type of substituted judgment can determine the patient's treatment (specific laws and regulations in this area vary from state to state). Of course, it would be extremely difficult to enforce adherence to oral antiretroviral therapy. However, long-acting injectable antiretroviral agents, which can being administered on a monthly or less frequent basis, could be a viable option in the context of a guardianship or substituted judgment.[2]

That the patient is willing to take "appropriate medications for [the] complications of AIDS..." suggests that—at least to some degree--the patient is manifesting a limited type of rational autonomy, and the principle of beneficence (see below) arguably means that the hospital is ethically required to provide "anticomplication" medications, even though they do not and will not prevent the patient's death, and even though he can't afford them.

Dr Wilner: The patient kept his appointments and appeared to be in full control of his faculties, despite his central nervous system infection with toxoplasmosis. The medical team did not feel he needed a psychiatric evaluation for competency. It may be that his fears regarding his family shunning him should they learn of his AIDS diagnosis were exaggerated. However, these fears were culturally appropriate, and there didn't seem an easy way to test whether they were exaggerated or not without revealing his diagnosis against his wishes.

We have told the patient that his refusal to take antiretroviral therapy has already resulted in severe complications of AIDS and that he will probably die of AIDS if he continues to refuse treatment. This information has not changed his position.

The Hospital's Ethical Responsibility

Dr Pies: All that said, I would argue that the hospital is ethically required to relieve the patient's suffering and reduce his incapacity in so far as—and just to the extent that—the patient permits appropriate care, assuming that the hospital has the logistical and financial means to do so: That is, the hospital is able to provide the "anticomplication" treatment without bankrupting itself and thereby compromising care for other patients.

The answer really depends on whether we view healthcare as essentially a market-based commodity (the historical model in the United States) or, as most European countries see it, a basic human right.

Here, we see some tension between "deontological"—duty-based—and "consequentialist" or utilitarian ("the greatest good for the greatest number") ethical systems. In theory, if a particular hospital doesn't have the logistical and/or financial means to provide such care, then in my view, that hospital is ethically required to help the patient obtain care in a facility that has those means. (I assume that social services has explored and pursued all available financial options, such as Medicaid, with this patient.)

Dr Wilner, you ask whether society must "bear the cost burden of this patient's care." The answer really depends on whether we view healthcare as essentially a market-based commodity (the historical model in the United States) or, as most European countries see it, a basic human right. This question continues to be very controversial in the United States, as a recent discussion on Medscape reveals,[3] and is really beyond the scope of my response here.

But even if we posit that healthcare is a basic right, we must ask: What are the limitations of that right, and what are the concomitant responsibilities of the patient? For example, even if we accept the idea that indigent patients who are seriously ill with or dying of AIDS have a right to receive appropriate medical care (a view I accept), that doesn't mean that such patients have an unconditional right to such care—or to any kind of care they want, even if it is medically inappropriate. After all, no "right" is absolute, and all rights in a free society are balanced against, and are often in tension with, other competing rights and obligations.

That said, in this case, the patient has agreed to take medications that presumably have a rational relationship to treating the complications of AIDS. This greatly raises the bar for refusal of care and, in my view, means that the hospital of record (or another appropriate facility) has an ethical responsibility to treat the patient—even under the nonideal circumstances described. By analogy: If a mentally competent patient with a surgically remediable tumor refused the indicated operation, but requested evidence-based, symptomatic medical relief of the tumor's peripheral complications, I believe his physicians would be ethically obligated to provide such relief.

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