By Stacey Kusterbeck
Many patients have never documented their preferences for future medical treatments, which can lead to distress and confusion when end-of-life care decisions have to be made. Even if there is a documented advance care plan in place, ethical conflicts still occur over whether it can be overridden. “Sometimes, previously expressed goals and preferences do not apply clearly to the current situation. Or the person has changed their views as they adapt to living with changes in their health and function,” says Joshua Lakin, MD, a palliative care physician at Dana-Farber Cancer Institute and Brigham & Women’s Hospital and an associate professor of medicine at Harvard Medical School.
One patient with diabetes expressed an aversion to dialysis in her advance care plan. This statement became a key focus for clinicians after the patient was hospitalized with a rapidly advancing unrelated serious illness and was incapacitated with renal failure. The directive said, “no dialysis,” but this was in the context of diabetes, not her new diagnosis of amyloidosis. Clinicians felt the patient possibly could benefit from dialysis in her current situation, but the only available guidance stated that the patient did not want it. “Her family and clinicians struggled to make decisions around that particular treatment, with some strong guidance that was not easily directly applicable to the current situation. It was hard for us, all together, to navigate,” says Lakin.
Ethicists can help with these cases by joining in with the clinical team and family as a third party to guide compassionate discussions and decision-making. “Ethics teams offer unique and powerful skills to interpret and apply imperfect information at a difficult time,” says Lakin.
Ethicists at Community Health Network in Indianapolis have seen many recent cases of a family wanting aggressive care, such as a full code status or a burdensome life-sustaining treatment, that the patient indicated they did not want. “Other surrogates want less aggressive care because the patient’s condition had deteriorated since the point in time when the advance directive was completed,” says Jordan Potter, PhD, HEC-C, director of ethics.
Ideally, clinicians would not have to guess what the patient would want in such cases because it would be documented along with their other treatment preferences. Potter and colleagues analyzed patient responses in an advance directive with a “Binding Guidance for Health Care Agent” section.1 This allows patients to specify whether their power of attorney (POA) has the authority to override their living will. Of 143 patient selections, responses were fairly evenly split on whether the POA or the living will should have the final authority.
The researchers also interviewed 74 patients about their rationale. Patients who chose their advance directive did so because they wanted their end-of-life treatment preferences strictly followed. One stated that she trusted the POA for other medical decisions but wanted the advance directive to be the final authority for end-of-life treatment. Some patients talked about not wanting to burden family members with having to consider whether to override their stated treatment preferences. Others worried that the POA might allow emotions to influence their decision-making, and that it could lead to aggressive care the patient did not want.
Patients who chose the POA as the final authority saw the advance directive as a tool to guide decision-making, as opposed to being the final word on the situation. Some stated that they thought their POA was capable of making the best judgments for whatever situation came up. Patients also expressed concern that the advance directive might not apply to an unanticipated medical situation, so the POA’s judgment might be needed in that case.
Ethicists should consider these two questions when consulting on cases where family wants to override an advance directive, says Potter:
- Is the wish to override the patient’s advance directive based on the patient’s wishes or the surrogate’s wishes? It is inappropriate for clinicians to honor a decision to override a patient’s advance directive based solely on the surrogate’s wishes. If the family claims the request is based on the patient’s wishes, clinicians should consider if there is any evidence to support this claim. “It’s hard to set a clear and consistent evidentiary threshold for this decision. But the threshold must be fairly high to override an advance directive,” says Potter.
- Is the family’s request in the best interest of the patient from a medical standpoint? “If a request for a life-sustaining intervention is futile or non-beneficial, then it is appropriate to forego offering that intervention — regardless of the advance directive,” says Potter. Ethicists can help clinicians to set appropriate boundaries if the family is unwilling to accept this. “Unfortunately, this sometimes occurs in these highly volatile emotional situations,” says Potter. “The team just needs to have that blunt conversation with the family to set those clear boundaries about what the team can and cannot do regarding overriding an advance directive.”
In rare cases, Potter has supported overriding a patient’s advance directive. Most of those cases involved a family wanting to de-escalate care when the advance directive requested more aggressive care. In one such case, an advanced dementia patient had a living will that stated preferences for artificial nutrition and hydration. However, the living will was created before the patient’s dementia diagnosis. The patient already had pulled out three separate feeding tubes as the result of behavioral disturbances. The patient’s spouse asked to proceed with hospice care, which contradicted the living will. “She was strongly convinced that the patient would adamantly not want to continue artificial nutrition and hydration in the setting of advanced dementia. The spouse advised clinicians that the patient did not have this kind of quality of life in mind when creating the living will,” says Potter.
Clinicians requested an ethics consult to determine if it was ethical to honor the spouse’s request. The spouse clarified that the patient’s intention was to proceed with a feeding tube for a short period of time after undergoing surgery. This was further supported by the living will, in which the patient stated that he did not want his life artificially sustained by life-sustaining medical interventions. The ethics consultation service and medical team agreed it was appropriate to honor the spouse’s decision to pursue hospice and forego feeding tube placement. “In this situation, we aided the team in thinking through their obligations based upon the relevant medical information, including both what the patient likely would’ve wanted given the current set of medical facts, as well as what was in the patient’s best medical interests,” says Potter.
Ethicists can proactively prepare clinicians by providing education on what to do if family wants to override an advance directive, suggests Sarah J. Russe, DBe, MA, HEC-C, program manager of the clinical consult service for the Medical Ethics Program at Northwestern Memorial Hospital. The first step is for ethicists to look at the advance directive. Some patients have a POA document with boxes checked about general preferences about quality vs. length of life. There are no details about specific interventions, so clinicians must do their best to apply those broad preferences to specific care choices.
Other patients have documented specific treatments they do or do not want (such as resuscitation attempts, long-term ventilator support, surgeries, or other intense or invasive interventions) on a living will or a practitioner order, such as a do-not-resuscitate (DNR) or Physician Orders for Life-Sustaining Treatment (POLST). According to Russe, it could be appropriate for the surrogate to make a care choice that at first glance appears incongruent with the patient’s wishes if one of these situations applies:
- if there are indications that the patient did not understand the scope of the document they were completing, their options, or the choice they were making;
- if there have been significant changes in the patient’s health status; or
- if the patient had expressed a change in preference to the surrogate.
Trevor M. Bibler, PhD, director of clinics ethics consultation services at the Center for Medical Ethics and Health Policy at Baylor College of Medicine, sees these recurring themes in ethics consults:
- A patient’s directive states that they do not want life-sustaining technologies if they develop a terminal or irreversible condition. The patient then develops an illness that results in some mode of life-sustaining technology. The surrogate decision-maker assumes that this means clinicians violated the directive. “But unless the healthcare team concludes that the patient has either a terminal or irreversible condition, the directive isn’t binding in the way they often assume,” says Bibler.
- A patient has a terminal or irreversible condition, and their representative wants life-sustaining technologies, in conflict with the patient’s stated wishes. When ethicists speak with the family, it sometimes becomes clear that the family is not following the directive because they have not unambiguously heard that the patient has a terminal or irreversible condition.
Ethicists might recommend a time-limited trial with an ultimatum, such as discontinuing treatment if kidney function does not improve within 24 hours. Clinicians can make a statement like, “We know having your rabbi come by is important. Please make sure they visit by tomorrow morning. We plan on starting to focus on her comfort, since her recovery is no longer possible.”
Mark Navin, PhD, HEC-C, professor of philosophy at Oakland University and a clinical ethicist at Corewell Health, has seen several cases where surrogates acted in ways that seemed, to the healthcare team, inconsistent with the patient’s documented preferences. In almost every one of those cases, the surrogate had a good reason, at least in their minds. “They claimed that the patient had something specific — or idiosyncratic — in mind when they used terms like ‘terminal condition.’ Or they argued that the patient’s current clinical state wasn’t the kind of situation the advance care plan was meant to address,” says Navin.
In Michigan, even when advance care planning documents seem to have a clear and applicable meaning, they do not override the authority of a patient-designated surrogate or court-appointed guardian. “That’s one reason I always advise my students, friends, and family to focus less on the details of their advance directives and more on choosing a healthcare proxy who genuinely understands them and can be trusted to make hard decisions under stress,” says Navin.
Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.
Reference
1. Potter J, Reis DS, Lesandrini J, Nelson E. Patient perspectives on the authority of advance directives in times of conflict: A mixed methods study. J Clin Ethics. 2025;36(2):121-131.
