When Patients Refuse Lifesaving Care

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


June 09, 2017

Medscape contributor Andrew N. Wilner, MD, recently encountered a vexing problem in his practice as a neurologist: multiple patients refusing medical treatment, at great cost to their own health and to the healthcare system. One such encounter involved cultural sensitivity around a particular therapy that further clouded the ethics of how to proceed with management. Dr Wilner and Ronald W. Pies, MD, a bioethicist and professor of psychiatry at SUNY Upstate Medical University in Syracuse, recently had an email discussion about such ethical quandaries, and about how to handle them in clinical practice.

Dr Wilner: Recently, we had a patient on the inpatient neurology service whose wishes created a very difficult management problem. Here is the case, in which details have been changed to protect patient privacy.

A 30-year-old man from Cameroon has had frequent admissions to this hospital owing to complications of AIDS. He has pulmonary and gastrointestinal tuberculosis, cytomegalovirus retinitis, and central nervous system toxoplasmosis. He is debilitated and requires the care of his family for his needs of daily living.

The patient takes the appropriate medications for these complications of AIDS. However, he is unwilling to take antiretroviral therapy, because it would reveal to his family that he has AIDS, which carries a strong stigma in his country.

The patient says he would rather die than confess to having the disease. And it appears that he will die from the complications of AIDS if he does not begin antiretroviral therapy soon. His refusal to take antiretroviral therapy has resulted in his debilitation from AIDS; frequent hospital admissions; and an enormous hospital bill, which he cannot pay.

To start, here are a few questions that came to mind in considering this case:

  1. Is the hospital ethically required to treat the complications of AIDS in this patient when he refuses to treat the underlying problem (AIDS), which would ameliorate or eliminate the complications?

  2. Must society bear the cost burden of this patient's care?

  3. To what extent is patient autonomy supreme?

  4. What is the foundation of the concept of patient autonomy?

Dr Pies: I very much appreciate this challenging case vignette and questions. In a sense, they are all of a piece, in that they all converge on the core principles of medical ethics. Accordingly, I am addressing them as essentially a single, multilayered question.

But first, let's distinguish legal from ethical responsibilities in this case, although the two categories normally overlap to a significant degree. The hospital's legal counsel would be in a position to advise the patient's care team on the legal issues in this case; I will limit my comments to the ethical issues that arise. In very general terms, these come down to (1) the patient's ability to give truly informed consent under the rather dire circumstances you describe, and (2) the physician's ethical responsibility to uphold the core principle of beneficence in relation to the other three core principles of medical ethics. (In addressing the ethical responsibilities of "the hospital," I am using that term as a proxy for the patient's physicians and healthcare team).

With regard to the first issue, I would be especially interested to know whether the central nervous system toxoplasmosis has affected the patient's ability to make rational decisions (see below, regarding "rational autonomy"). There is some evidence, for example, that "...Behavioural/mental disorders that include schizophrenia, mood disorders, personality changes and cognitive impairments may be related to infection with T[oxoplasma] gondii."[1]

Specifically, I would ask: Has the patient had a psychiatric evaluation to determine mental competency and ability to give informed consent? For example, is it really the case that taking antiretroviral therapy would necessarily reveal his diagnosis to his family? Or is the patient's fear exaggerated? Even if the family did learn of the patient's AIDS, does the patient merely assume the family would not be understanding or empathic, or is there a rational basis for the belief (eg, "My brothers have said many times that people with AIDS are evil and deserve to die")? The fact that AIDS carries "a strong stigma in his country" does not necessarily mean that the patient's family would shun him, disown him, refuse to care for him, et cetera—although, of course, this might occur.

These are issues that would need to be explored and assessed, with one question regarding competency being, "How realistic is the patient's fear of stigma, within the family context?"


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