Medical Providers’ Views Vary on Refusals of Life-Sustaining Treatment
After a patient attempted suicide by overdosing on prescription medications, the psychiatrist who had assessed him came to discuss the case with Thomas D. Harter, PhD, director of the department of bioethics and humanities and chair of the IRB at Gundersen Health System in La Crosse, WI.
“She interviewed the patient and found him to be rational. He was no longer acutely suicidal, but explained that his life lacked value because his damaged hands prevented him from working,” Harter recalls.
The patient was otherwise medically stable. In the psychiatrist’s view, admission to an inpatient behavioral health hospital did not seem warranted. However, the psychiatrist’s colleagues strongly disagreed, arguing that since the patient had recently been suicidal, he lacked decision-making capacity. “Patients who elect to forgo life-sustaining treatment used to be considered suicidal and would not be permitted to stop treatment. But that perception is no longer considered ethically acceptable,” Harter reports.
The case brought to light the “philosophically nuanced difference” between patients who make treatment decisions in which they accept death as the outcome vs. decisions that patients hope will end their lives, Harter says. To learn more about what physicians thought about this issue, Harter and colleagues surveyed 714 medical providers about their perspectives on decision-making capacity and moral acceptance in cases of withdrawing or withholding treatment or suicide.1
Regardless of whether a medical provider questions a patient’s treatment decision-making capacity depends in part on the type of provider. Behavioral health providers tended to question decision-making capacity to refuse life-sustaining treatment, more than surgeons or other medical providers. “I was expecting behavioral health providers to be more sympathetic to the patient’s reasons for refusing surgery. The results showed the opposite,” Harter shares.
Overall, providers questioned decision-making capacity more in cases where patients refused life-saving surgery or requested voluntary starvation than in cases of patients asking to deactivate pacemakers. “I was personally surprised by the general acceptance of the decision [to deactivate a pacemaker], both in terms of moral permissibility and lack of concern about the patient’s decisional capacity,” Harter observes.
Another surprising finding was on providers’ views regarding refusal of life-saving surgery. “I was expecting the surgeons to question the patient’s capacity to refuse to a much higher degree than they did,” Harter offers.
The study’s findings highlight the complexity of providers’ assessments of treatment decision-making capacity. “Physicians should be willing to accept that ‘capacity’ is not singular in terms of decision-making,” Harter argues.
Patients may lack capacity in one sense, but have capacity in another. For example, some adult patients struggle with cognitive delays or neurotrauma that prevents them from thinking abstractly about complex medical information, making it impossible for them to make their own complex medical decisions. However, those patients may be able to think concretely about someone whom they love or trust to help them make complex decisions. In such cases, the patient may have the capacity to name a power of attorney for healthcare, but cannot be their own treatment decision-maker.
“The way to limit variability in capacity assessments is to standardize the practice through continuous education of all clinicians involved in direct patient care or as consultants, not just physician-level providers,” Harter says.
Ethicists also can help determine how best to proceed with treatment decision-making in cases in which patients lack decisional capacity. “Ethicists can help explain why the tie between treatment decision-making and capacity is morally important and essential for sound ethical medical practice,” Harter notes.
Conflicts over refusal of life-sustaining treatment by patients lacking decision-making capacity is a common reason for ethics consults at NewYork-Presbyterian Hospital. “For ethics consults in our hospital, we routinely refer to a paper that suggests the consideration of seven core questions when considering treatment of an incapacitated patient over the patient’s objection,” says Lydia Dugdale, MD, MAR (ethics), associate director of clinical ethics at NewYork-Presbyterian and director of the Columbia Center for Clinical Medical Ethics.2
Ethicists should consider the likely severity of harm without intervention, along with how imminent harm might be without an intervention. They should consider the risks of the proposed intervention, not just whether it will work. Consider why the patient is refusing and how might the team carry out treatment over those objections. Finally, consider the potential emotional effect of a coerced intervention.
Remaining mindful of these considerations did help guide one group of clinicians in these complex cases.3 Researchers retrospectively reviewed ethics consultations from 2017-2020 where adult patients were determined to lack decision-making capacity and were refusing treatment. In most consults, clinicians were given an ethics recommendation to proceed over the patients’ objections.
“We found that although all seven questions were important to the ethical analysis of a patient’s situation, the presence of logistical barriers to treatment and the imminence of harm without intervention most significantly affected our decision-making,” says Dugdale, one of the study’s authors.
The implications for clinical ethicists are that if death is imminent and the intervention is rather straightforward, one should proceed over the patient’s objection. For example, removing a ruptured appendix could save the patient’s life and would be a fairly limited intervention.
“By contrast, sedating and subjecting a patient to thrice-weekly dialysis over his wishes would save his life, yes, but the logistics to sedating and transferring an unwilling patient in perpetuity would render it ultimately impractical and, thus, should not be imposed,” Dugdale says.
Despite the fact a large proportion of ethics consults regard treatment over objection, “there is a large gap in the literature about how to handle such questions,” notes Katherine Fischkoff, MD, MPA, FACS, associate professor of surgery and critical care at Columbia University Medical Center.
Consults for treatment over objection cover a wide variety of medical interventions: General hospital treatment, surgery and other invasive procedures, and discharge planning.
“We published our experience in an attempt to provide a framework for others to use to help make clear and consistent decisions,” Fischkoff says.
- Harter TD, Sterenson EL, Borgert A, Rasmussen C. Perceptions of medical providers on morality and decision-making capacity in withholding and withdrawing life-sustaining treatment and suicide. AJOB Empir Bioeth 2021;12:227-238.
- Rubin J, Prager KM. Guide to considering nonpsychiatric medical intervention over objection for the patient without decisional capacity. Mayo Clin Proc 2018;93:826-829.
- Fischkoff D, Prager K, Dastidar J, et al. Ethical framework to guide decisions of treatment over objection. J Am Coll Surg 2021;233:508-516.e1.
Ethicists can help determine how best to proceed with treatment decision-making in cases in which patients lack decisional capacity. They can explain why the tie between treatment decision-making and capacity is morally important and essential for sound ethical medical practice.
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