The typical patient in an American hospital is an older adult. During the coronavirus pandemic, people ages 85 and older have had the highest rates of death from COVID-19, followed by people ages 75 to 84.
When hospital physicians and nurses are unsure of “the right thing to do” for a patient, they are experiencing ethical uncertainty. These situations frequently arise in the care of an adult who lacks the capacity to make decisions about potentially life-sustaining interventions. Capacity in this context means the cognitive ability to understand diagnosis, prognosis and treatment options (including forgoing treatment); make an informed and reasoned decision that reflects the potential consequences of this decision; and communicate this decision.
An adult is presumed to have decision-making capacity unless it is determined that they lack it. Dementia, medication effects or a metabolic condition can impair decision-making capacity. In medical contexts, capacity is decision-specific. A person whose capacity to make decisions about life-sustaining treatment is absent or impaired may have capacity to make decisions about other aspects of care.
All accredited hospitals are required to have some mechanism to assist with ethically complex cases. Clinical ethics services consult with care teams, patients and families on ethical challenges arising in practice. These services may be provided by an individual consultant (clinical ethicist) or by an ethics committee.
This article focuses on ethical uncertainty in medical contexts involving older adults as patients. Our perspectives reflect healthcare ethics, a methodological approach that responds to ethical uncertainty arising in healthcare work. As scholars and researchers, we also reflect interdisciplinary work across fields such as gerontology, disability studies and bioethics.
Role and Limits of Advance Directives
Ethical practice in healthcare is aligned with patients’ legal and ethical rights. For example, the right to refuse life-sustaining interventions is a long-established Constitutional and common-law right in the United States, secured via the U.S. Supreme Court’s Cruzan decision in 1990 and reflected in state law and hospital policy. Advance directives reflect these rights as they apply to people who lack or may someday lack decision-making capacity, by recognizing decisions and preferences communicated when a person had capacity.
Advance directives (See Sidebar, at bottom) are designed to help medical professionals manage ethical uncertainty during treatment decision-making by providing guidance concerning patient preferences. The value of advance directives is often limited. When a person has multiple comorbid, often age-associated conditions, it is difficult to anticipate every situation in which a person’s values and preferences could be conveyed through a treatment decision.
A treatment directive (“living will”) documents a person’s preferences for treatment and care.
A do-not-resuscitate (DNR) order is an example of a treatment directive.
A proxy directive, also known as a durable power of attorney for health care, enables a person to appoint someone else—such as a partner or an adult child—to make decisions as a surrogate should this person lose decision-making capacity. Most states have legal guidelines concerning the priority order or appropriate process for identifying a surrogate decision-maker if no surrogate is appointed or identified by the patient.
In some states, portable orders for life-sustaining treatment (often known as a POLST or MOLST) consolidate advance directives and provide instructions for medical professionals, including emergency medical services, concerning the care of a seriously ill person facing foreseeable emergencies. See: POLST: Portable medical orders for seriously ill or frail individuals
What a person values, such as their social relationships or their ability to continue activities that provide meaning or pleasure, may not translate into a medical decision. Crucially, advance directives do not create—or finance—the care environment a person may need or prefer.
People who have experienced racial, ableist or other forms of bias in healthcare may be wary of advance directives, perceiving them as limits on treatment. In these situations, clinical ethics consultation may be helpful in listening to the concerns of patients or family members, and in collaborating to develop a care plan that reflects what the patient wants. Clinical ethicists also can provide guidance if a patient loses decision-making capacity. Healthcare providers must be prepared to support patients and families during hospitalization, whether or not a treatment decision is at hand.
Managing Ethical Uncertainties
Patient care teams can turn to clinical ethics services for help in ethically uncertain situations, not limited to interpreting advance directives. Here are examples of challenging situations that frequently arise in caring for hospitalized older adults:
Disagreement or conflict: Surrogate decision-making is often stressful. Surrogate decision-makers need support from care team members and information about the surrogate’s role, even when they are well-informed about a now-incapacitated person’s preferences. Sometimes a patient’s surrogate decision-maker disagrees with a clinical recommendation concerning whether to start, stop or continue a treatment plan. Sometimes conflict within a family, or distrust between a patient’s family and patient’s care team, delays decision-making or care.
A team or family may request clinical ethics consultation to help resolve disagreements and reduce interpersonal conflict. Some hospitals offer bioethics mediation training to help patient care staff communicate and rebuild trust with surrogates and others. Understanding the sources of the disagreement—for example, why a surrogate decision-maker may press for an intervention that a patient’s physician sees as burdensome or even harmful to a patient—is crucial in these difficult cases.
Resource allocation decisions should guard against implicit ageism and ableism.
If an older adult who has rebounded from previous crises associated with a progressive condition is now in deteriorating health, the patient’s surrogate may be uncertain how to make decisions that reflect the patient’s values and preferences and also the patient’s current condition. A family member may express concern that forgoing treatment or acknowledging that the patient is nearing the end of life is “doing nothing” or “giving up,” adding further stress to the surrogate’s role. Explaining how the patient’s pain and symptoms will be managed may help reduce sources of disagreement by clarifying what can benefit this patient at this point in their illness.
Patient who is alone—or unrepresented/unbefriended: In this situation, an adult may have multiple co-morbidities, have deteriorating health, or be experiencing repeated crises. A decision about whether to start, stop or continue a treatment plan is at hand. An unrepresented patient has insufficient capacity to make this decision, has no relevant treatment directives, and has no available surrogate decision-maker to provide insight into the patient’s preferences. Unrepresented patients are not uncommon; many older adults experience cognitive decline that limit their decision-making capacity and have lost touch with family or have no surviving family or friends with capacity. Many patients alone have a history of homelessness, substance use disorder, and/or complex psychiatric diagnoses that have led to long-term estrangement from family and friends.
How should treatment decisions be made for this patient? State law may specify which decisions can be made on behalf of an unrepresented patient by the physician responsible for the patient’s care, with review by clinical ethics, a hospital’s chief medical officer, a court-appointed guardian or another independent reviewer. For state laws, see “Who Decides When a Patient Can’t? Statutes on Alternate Decision Makers.”
When a patient’s values and preferences concerning a medical decision are unknown and cannot be communicated by the patient (who may be able to communicate about other aspects of care, such as food preferences), a clinical ethics consultant or ethics committee would advise implementing the best interests standard. This standard aims to identify which option would provide greatest benefit relative to burden and risk for a person in this patient’s condition. Applying the best interests standard includes attention to what can reliably be known about this patient’s life to this point, such as information about the patient’s religious or moral commitments that may be relevant to a medical decision.
A way to picture the best interests standard is to ask, what would provide the most benefit overall for the patient and cause the least harm? Discussion among care team members with support from clinical ethics helps to elicit different perspectives, avoid starting interventions that are likely to fail, and call attention to generalizations (for example, concerning “quality of life”) that may reflect biases about age or disability.
Care transitions: Hospitalized patients who have been living in the community typically want to return home. When a patient has moderate dementia, has post-hospital care needs (such as daily medication), and lives alone (or with a similarly impaired partner), the patient’s care team may be unsure how to balance patient preferences with regulatory and ethical duties to ensure a safe discharge plan. Organizational pressure to “clear beds” once patients are stable and no longer need hospital care adds stress.
Clinical ethics services in partnership with hospital discharge planning, social work case management or transitional care hospital-to-home nursing (if available) can help clarify whether and how a person with moderate dementia can continue to live independently and what services and supports are available and acceptable to this person in the community where they live.
The lack of adequate public financing for home-based services and supports associated with dementia creates inequity for people with dementia and for their families, who pay out-of-pocket for services and provide unpaid care to a far greater extent compared to other major end-of-life trajectories. Hospital care teams and clinically based ethicists witness this inequity frequently. They can contribute their voices and perspectives to efforts to create better systems of care for our aging society. See “Why dementia takes a huge financial toll on families.”
Is Age Relevant in Medical Decision-making and Resource Allocation?
In the medical care of adults, a patient’s age may be relevant to the expected benefits and risks of treatment. Many chronic progressive health conditions are age-associated, and vulnerabilities such as loss of bone density may accumulate as part of physiological aging. Factors relevant to a patient’s potential for good or bad treatment outcomes include their overall condition, which should not be reduced to chronological age.
As noted above, pandemic data show that people in in the ages 85 and older and ages 75 to 84 cohorts are at highest risk of severe COVID-19. These data also reveal that mortality occurs at younger ages in racialized minority populations that have long experienced health inequities resulting from social inequalities such as racism.
As health systems have grappled with immense pressure on limited resources—staff, equipment, medication, space and most recently, vaccines—age arises in decisions about prioritizing patient groups in resource allocation.
Implicit ageism and ableism in a society can seep into the framing of resource allocation decisions. When scarce resource allocation plans try to correct for ageism, they can end up being overly broad. For example, prioritizing all “seniors,” or “people older than age 65” for vaccination fails to account for significantly different levels of risk within America’s immense older adult population. If adults at highest risk of severe COVID-19 are crowded out, vaccine allocation will be less equitable and less effective.
Going forward, reflection and action on ethical challenges arising from the pandemic across aging societies will be strengthened via continued collaboration between gerontology and bioethics.
Nancy Berlinger, PhD, is a research scholar at The Hastings Center in Garrison, New York. Laura Guidry-Grimes, PhD, HEC-C, is an assistant professor and clinical ethics consultant in the Department of Medical Humanities and Bioethics at the University of Arkansas for Medical Sciences in Little Rock. Adira Hulkower, JD, MS, HEC-C, is chief of the Clinical Ethics Consultation Service at Montefiore Medical Center in the Bronx, New York.