The Dilemma of the Competent Patient Who Refuses Recommended Treatment

Ronald W. Pies, MD


July 13, 2017

I recently had the privilege of commenting on a challenging case vignette, provided by neurologist Dr Andrew Wilner. The case generated many comments and questions from Medscape readers, and I would like to respond to some of the specific issues these readers raised.

To recap briefly, Dr Wilner's case involved a debilitated 30-year-old man from Cameroon who was experiencing complications of AIDS, including pulmonary and gastrointestinal tuberculosis (TB); cytomegalovirus retinitis; and central nervous system toxoplasmosis. Despite the central nervous system involvement, we are given to understand that the patient is "in full control of his faculties." However, he has required frequent hospitalizations and is dependent on the care of his family for his needs of daily living.

The patient has agreed to take appropriate medications for his complications, but refuses antiretroviral therapy (ART) because he believes that this would reveal his AIDS diagnosis to his family—a diagnosis he says carries a strong stigma in his country. The patient says that "...he would rather die than confess to having AIDS." Dr Wilner indicated that " appears that he will die from the complications of AIDS if he does not begin [ART] soon...." Furthermore, the patient has run up an enormous hospital bill, which he cannot pay.

Dr Wilner asked, among other questions, "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?"

My response was a qualified yes: The hospital does have an ethical obligation to treat the patient's complications...

My response was a qualified yes: The hospital does have an ethical obligation to treat the patient's complications, even if he refuses ART, provided that (1) the patient has intact decisional capacity (ie, he understands the risks of refusing ART, including the risk for death), and (2) there continues to be an appropriate medical rationale for the "anticomplication" medications.

I also replied to Dr Wilner's questions regarding the rationale and scope of a patient's autonomy, noting that the patient's preference is only one of four key medical ethical principles to weigh in the ethical equation—the others being beneficence, nonmaleficence, and justice.

Readers' responses were thoughtful and sometimes passionate. Some readers argued that the patient's unreasonable objection to ART had put his doctors and the hospital in an untenable bind, and that medical staff should not be manipulated into providing further inadequate treatment. One reader argued that the principle of "justice" is violated by the hospital's providing partial or inadequate care at great expense, and two readers raised concerns regarding the risk that the patient's TB or HIV infection could be transmitted to his family.

In contrast, one reader argued that the patient's autonomous decision should be respected, and another warned against the "slippery slope" of withholding treatment from patients whose diseases are, in some sense, "self-inflicted." There were also differing views on whether the doctors should "break confidentiality" and inform the patient's family of his diagnosis—or perhaps disguise the ART medication so that the family would not be aware of the AIDS diagnosis. (Indeed, it is not clear to me why the ART could not have been dispensed confidentially in the first place—but this a technical matter I will not address.)

Several readers argued that referral of the patient to a hospice setting for palliative care was the most appropriate option.

The Complexities of Treatment Refusal

As a medical ethicist, I find that there is rarely one "correct" solution to complex problems in our care of patients—and often, there is a good deal of debate and soul-searching among clinicians. I think this is reflected in some of the strong feelings and sharp exchanges readers have posted here. These disagreements are a kind of microcosm of the more intense arguments and "splitting" that can occur on inpatient units or in emergency departments, when faced with a patient of the sort whom Dr Wilner described. As a psychiatrist, I think it important that clinicians remain aware of the strong negative feelings that patients such as this may evoke, so that we can process those reactions and not "act out" our understandable anger, helplessness, and frustration.

As a medical ethicist, I find that there is rarely one 'correct' solution to complex problems in our care of patients—and often, there is a good deal of debate and soul-searching among clinicians.

An excellent article by Dr Joseph Carrese of Johns Hopkins University highlights the complexities of dealing with a competent patient's refusal of care.[1] As Dr Carrese points out—and as is (apparently) true with Dr Wilner's case—there is often an irreconcilable conflict between "...two fundamental ethical obligations... (1) the duty to promote a patient's well-being and protect the patient from harm; and (2) the duty to respect the wishes of a competent patient."

As some readers have argued, there are different ways of "weighing" the contribution of the four cornerstones of medical ethics: autonomy, beneficence, nonmaleficence, and justice. This last component becomes especially problematic in the case of Dr Wilner's patient, because valuable time, money, and staff resources are being spent on a patient who—although apparently mentally competent—is refusing the most appropriate care. It's understandable that some clinicians will want to resolve the situation by honoring the patient's autonomous wishes, whereas others will question the "justice" of providing further care for a patient who is refusing treatment of the underlying disease process.

My own view of Dr Wilner's case is summarized by Dr Carrese as follows[1]:

In general...patient decisions are honored. This is true even if patient decisions are perceived by their physicians to be "bad" or "irrational," unless there is a threat of harm to a third party, an inadequately treated psychiatric illness, or a concern about [decisional] capacity.

On the basis of the limited information available, I do not believe that the case in question meets any of these criteria, although we don't have the benefit of a full "decisional capacity" evaluation (sometimes called a "competence to make treatment decisions" evaluation—though that is a legal, not a clinical, term).

Now, as several readers have pointed out—and as Dr Carrese concurs—a patient's autonomy is not absolute, regardless of how irrational, harmful, or ridiculous the request; nor are physicians ethically obligated to provide treatment that they view as violating "...standards of scientific or ethical practice, or the law..."[1] But I do not see such a violation in the case of Dr Wilner's patient. It would be one thing if the patient in question were insisting on undergoing a lobotomy, receiving laetrile, or being exposed to gamma rays. No responsible physician would accede to such obviously harmful and irrational expressions of "autonomy"!

To the contrary, we are told that the patient is accepting "...the appropriate medications for [his] complications of AIDS." The key term is "appropriate." So the patient's expression of autonomy, in my view, is neither irrational nor harmful. Moreover, the medications prescribed may indeed be prolonging the quality of the patient's life and reducing his suffering or incapacity—although this is not clear from the limited information provided.

Regarding coercive measures aimed at forcing the patient to comply with optimal, recommended treatment: In my view, this would not be justified under current ethical or legal guidelines, absent some clear and present danger to others or clear-cut suicidal intent on the patient's part, owing to a psychiatric illness, such as major depression. We lack data to substantiate either of these criteria. The one possible exception that has been raised is the issue of the patient's TB. As the Centers for Disease Control and Prevention notes, "Public health officials generally may isolate individuals with TB disease if they pose a threat to the public's health..." If such a threat has been established in this case, then home isolation or isolation in a facility may be legally justifiable.

As for the risk that the patient will transmit his HIV infection to family members, I believe that this is best addressed not by disclosing the patient's AIDS diagnosis to the family, but rather by carefully instructing family caregivers in "universal precautions" for dealing with infected blood or bodily fluids.[2]

Indeed, informing the patient's family of the patient's diagnosis—against his express wishes—would be both a violation of current Health Insurance Portability and Accountability Act regulations and of the ethical principle of protecting the patient's confidential information, absent permission to release it to others. Confidentiality—though not an absolute right and really more a privilege constrained by law—is not legitimately "broken" unless there is (1) legal compulsion to release medical information, as, for example, via a subpoena; or (2) clear evidence of imminent harm to self or others, as when a Tarasoff-type situation arises (eg, a patient with psychiatric disorder is threatening harm to a specific party, and the clinician incurs a "duty to warn" or to take other steps to protect the potential target).

In the case of Dr Wilner's patient, I do not see any ethical rationale for informing the patient's family of his AIDS diagnosis, against his wishes. (I might reason differently if I learned, for example, that the patient is having unprotected sex with a caregiver—but this seems extremely unlikely, given the patient's debilitated state). That said, if after the patient's death the family discovers that the AIDS diagnosis had been kept from them, they might react angrily and even seek legal redress; thus, obtaining forensic or legal consultation on this point would be prudent on the part of the hospital.

Finally, although most of us can understand the impulse to "boot" this difficult patient from the medical care system, simply discharging him from care without adequate medical follow-up would amount to abandonment, in my view—a very serious ethical breach, indeed. As Dr Carrese[1] notes, "In the setting of irrevocable patient-physician disagreements, physicians must take whatever measures are necessary to facilitate an effective transition of care to another physician."

A Possible Work-Around?

One possible work-around occurs to me. If the patient were willing to come into the hospital for, say, monthly injections of long-acting antiretroviral agents, that might solve the dilemma—so long as his family is not apprised of the reason for the injections. But if, for some reason, the patient refuses this, transferring him to home or residential hospice care may be appropriate, assuming that he meets the usual criteria for such care. This is with the proviso that there is still physician involvement in the patient's care, and that his current "anticomplication" medications can still be administered, assuming that these agents are still deemed useful by the treating physician.

In the meantime, if the patient should present to the emergency department, as Faith Lagay, PhD, and Art Derse, MD, JD,[3] clearly state: "In all events, seriously injured or ill patients who refuse treatment [in the emergency setting] should be given comfort care rather than turned away because of their refusal."

Of course, the medical team's approach could quickly change, if the patient were nearing death—at which point, the goal should be solely "comfort care," relief of pain and suffering, and psychological support for the patient and his family.

I appreciate the opportunity to have discussed this difficult and often frustrating case, and I hope that the central ethical issues in the case have been clarified.

Acknowledgement: I wish to thank James L. Knoll IV, MD, for his comments on this piece; however, the views presented here are solely my own.

Further Reading

Engel KG, Cranston RE. When the physician's medical judgment is rejected. Virtual Mentor. 2004;6.

Beauchamp FL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press; 2001:57-112.


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