Patients Without Surrogates Pose Ethical Challenges at End of Life
Decision-maker often is unclear
The issue of incapacitated patients lacking surrogates has received growing attention, resulting in a newly updated position statement and several case studies. Some ethical approaches include the following:
- relying on what an average and reasonable patient would have wanted in the same situation;
- minimizing foreseeable harm to the patient;
- considering not only the patient’s physical needs, but also social interests and the need to retain dignity.
Despite aggressive medical and surgical management, a patient who had been admitted to NYU Langone Medical Center in New York City with a cardiac arrest following an intracerebral hemorrhage suffered significant brain injury. The patient was unaccompanied.
“All efforts were made to attempt to seek a surrogate,” says Ariane Lewis, MD, an assistant professor in the hospital’s departments of neurology and neurosurgery. No one was identified.
“We were very disturbed that, because this patient had no surrogate to relay his wishes to us, we were legally obligated to continue organ support, despite the fact that he was in a vegetative state and we believed he would never be able to have a meaningful quality of life,” says Lewis, who co-authored a paper on the case.1
The physicians were intrigued to learn that New York law regarding management of the case differed from the law in other states. “The law is not always clear-cut about how to handle these situations,” says Lewis. It often is unclear who should make decisions on behalf of the patient — the physicians, an ethics committee, or an externally appointed, unaffiliated person.
“Management of ‘unbefriended’ patients is always complicated, as is management of end-of-life issues,” says Lewis. Cases that involve both scenarios are particularly complex. “Ethicists can help lawyers, physicians, and politicians to construct clearer policies for management of these situations,” says Lewis.
Trevor M. Bibler, PhD, assistant professor of medicine at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston, says, “Incapacitated, unrepresented patients pose a unique ethical challenge for a number of reasons.”
End-of-life decisions typically are made through the process of shared decision-making. “This is meant to be a two-way street, where the feasible options for treatment are matched with the patient’s values and treatment preferences,” says Bibler.
If the patient has no one to speak on his or her behalf, clinicians have no way to know who the patient was, the kind of life he or she led, and what interventions he or she would accept or reject, given the patient’s unique values. Thus, says Bibler, “any attempt to respect the patient’s autonomy would be a shot in the dark.”
Standards for Decision-making
According to an updated position statement from the American Geriatrics Society (AGS), the process of arriving at a treatment decision for an unbefriended older adult should include the following:
- capacity assessment;
- a search for potentially unidentified surrogate decision-makers, including non-traditional surrogates;
- a team-based effort to ascertain the unbefriended older adult’s preferences by synthesizing all available evidence.2
“My initial motivation for writing the position statement was to improve my understanding of this highly vulnerable population, so I could provide them with the best possible care and advocate for them more effectively,” says Timothy Farrell, MD, AGSF, one of the position statement’s authors and associate professor of medicine in the division of geriatrics at University of Utah School of Medicine in Salt Lake City.
Farrell saw a need for physicians to become better acquainted with this population. “As I reviewed the literature, I noticed that the last AGS position statement on the topic needed to be updated to reflect new developments in providing the most appropriate care for this population,” he says. These updates include the following:
- new data on the prevalence of the “unbefriended” population in ICUs and long-term care;
- recognition of variability among states with respect to their legal standards;
- a trend toward team consensus, rather than individual physician decision-making when action must be taken;
- recognition that “stranger” guardians are potentially problematic;
- promising new partnerships within communities to advocate for these uniquely vulnerable individuals.
One approach is to use a “best interests” standard to make decisions for unrepresented patients. “Decisions are based on what an average and reasonable patient would have wanted in the same situation,” Bibler explains.
Using this approach, the team asks, “What action would an average patient want?” and acts accordingly. This doesn’t necessarily reflect a particular patient’s wishes. “Given the simple fact of preference diversity, there is always the possibility that a patient would prefer treatments outside the ‘average,’ or act ‘irrationally,’” says Bibler.
Another possible standard for medical decision-making focuses on the physician’s responsibility to minimize foreseeable harm. “Rather than attempting to prioritize autonomy through a reliance on best interests, this approach states that the best path is the path that minimizes possible bad outcomes that harm the patient,” says Bibler.
The clinical team’s question then becomes, “What action minimizes foreseeable harms?” “However, this ‘minimizing harm’ standard is not as clear-cut as it might appear at first blush,” cautions Bibler.
Physical and psychological harms are visible and recognizable. “Intuition, professional guidance, and moral and legal norms tell us that unduly causing physical and psychological harm is a bad thing that should be avoided,” says Bibler.
Other types of harm are more subjective. One example is performing CPR on a dying patient for the family’s benefit, against the wishes of the patient. The patient will not directly experience either the pain of broken ribs or the psychological harm of having his or her wishes rejected.
“Other kinds of harm, such as harm to one’s dignity or social standing, are less tangible than broken ribs and broken promises,” adds Bibler. “What counts as a ‘good’ versus ‘bad’ decision can be hard to discern.”
The time-sensitive nature of many decisions is another ethical challenge. “Since the patient is critically ill, this means that going through the process of establishing a guardian would take much longer than the patient may have,” says Bibler.
There is a possibility that an appointed guardian will make decisions that preserve the “status quo” without considering the patient’s overall welfare and dignity. “The patient’s responsible physician then becomes responsible for making a kind of unilateral decision that goes against the default model of shared decision-making,” says Bibler.
The finality of end-of-life decisions makes the situation even more ethically complex. “An unrepresented and incapacitated patient whose medical care includes less invasive, less consequential procedures is still a challenge, but less so,” says Bibler.
Once the care team realizes that some kind of life-or-death decision must be made, “the ethicist has to unpack this,” says Bibler. “The ethicist often finds a tendency to attempt to preserve bodily interests at the expense of other important interests.”
In this scenario, ethicists can underscore the importance of considering the patient’s social interests and retaining dignity. “Once these interests are accounted for, it will clarify what is at stake in continued treatment or withdrawing life-sustaining interventions,” says Bibler.
The term “unbefriended” is commonly used in the medical and legal literature to describe adult patients without surrogates. Bibler objects to this term. “I see it as a needless and inaccurate neologism that assumes that the patient has no friends, and gives the impression that no one is invested in her care,” he explains.
In contrast, the term “unrepresented” makes no value judgments about the patient’s social-familial relationships. “Perhaps there is a better label than ‘unrepresented,’ but it isn’t ‘unbefriended,’” says Bibler.
Farrell agrees that it’s important to remember that the term “unbefriended” doesn’t mean that someone has no friends or close connections. Rather, it is a term used to refer to a person who lacks the capacity to provide informed consent to medical treatment, and faces added challenges because they have no documented care preferences and no identified surrogate.
“The new AGS guidance is, in part, an effort to ensure that all older adults take steps to document their wishes for medical treatment and identify surrogate decision-makers, if desired, to be better prepared for the future,” says Farrell.
Hospital ethicists can identify at-risk patients and intervene appropriately. “One of the most important points we make in the position statement is that proactive steps are needed to prevent men and women at risk for becoming ‘unbefriended’ from becoming unbefriended,” says Farrell.
For instance, ethicists can search for surrogate decision-makers, including nontraditional ones. “When it becomes necessary to make medical decisions on behalf of an older adult who is unbefriended, the position statement may be a useful resource for hospital ethicists,” says Farrell.
Massachusetts is one of only a few states without a formal public guardianship system. “There is a patchwork of agencies which help fund guardianships where possible. Otherwise, the courts rely on finding people, mainly attorneys, to serve as a guardian on a pro bono basis,” explains Casey Catlin, MA, project coordinator for Boston VA Research Institute’s Examining the Need for a Public Guardian in Massachusetts.
The researchers wanted to better understand how this system is functioning for adults who lack decision-making capacity, have no advance directives, and have no family or friends available to serve as a surrogate.3 The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short-term gains for long-term costs, inabilities to meet a patient’s values and preferences, and conflicts of interest.
Catlin says these findings, coupled with ongoing research, demonstrate the need for a public guardian’s office to provide services for vulnerable individuals.
“I see public guardianship as an issue of social justice. People with the financial means to pay for a private guardian get better care,” says Catlin. These individuals aren’t left waiting during a search to find someone willing to take on a case pro bono. Paid guardians also are more likely to spend time and energy advocating for the patient.
“Another relevant ethical issue is respect for people’s rights and dignity,” says Catlin. Guardianship means the person gives up all legal rights as an individual, and is completely vulnerable to the guardian to whom the person entrusts his or her care. “Ideally, attempts will be made to restore or enhance capacity, and pursue less restrictive alternatives, before plenary guardianship is sought,” says Catlin.
The researchers heard stories of caring and thoughtful guardians who treated their wards with respect and kindness. “Professional guardians are likely to know nothing about the ward prior to their appointment, so they must make an effort to understand the person’s unique values, history, and preferences,” says Catlin.
The researchers also heard of guardians who, overburdened and uncompensated, neglected to complete even basic duties like signing paperwork and returning phone calls. “It’s essential for guardians to have proper training, education, and oversight,” says Catlin.
- Sequeira AL, Lewis A. Ethical and legal considerations in the management of an unbefriended patient in a vegetative state. Neurocrit Care 2017 May 8. doi: 10.1007/s12028-017-0405-8. [Epub ahead of print]
- Farrell TW, Widera E, Rosenberg L, et al. AGS position statement: Making medical treatment decisions for unbefriended older adults. J Am Geriatr Soc 2017: 56(1):14-15.
- Moye J, Catlin C, Kwak J, et al. Ethical concerns and procedural pathways for patients who are incapacitated and alone: Implications from a qualitative study for advancing ethical practice. HEC Forum 2017; 29(2):171-189.
- Trevor M. Bibler, PhD, AGSF, Assistant Professor of Medicine, Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston. Phone: (713) 798-8612. Email: [email protected].
- Casey Catlin, MA, Project Coordinator, Examining the Need for a Public Guardian in Massachusetts, Boston VA Research Institute, Brockton. Phone: (775) 530-1813. Fax: (774) 306-8752. Email: [email protected].
- Timothy Farrell, MD, AGSF, Associate Professor of Medicine, Division of Geriatrics, School of Medicine, University of Utah, Salt Lake City. Phone: (801) 581-2628.
- Ariane Lewis, MD, Assistant Professor, Division of Neurocritical Care, Departments of Neurology and Neurosurgery, NYU Langone Medical Center, New York City. Phone: (646) 501-0243. Fax: (646) 754-9771. Email: [email protected].
The issue of incapacitated patients lacking surrogates has received growing attention, resulting in a newly updated position statement and several case studies.
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