Finding a friend for unbefriended patients

Hospitalists can help the most vulnerable.

Unbefriended patients can pose a quandary for hospitalists. These patients, also sometimes known as unrepresented, lack the capacity to make their own medical decisions and have no advance directive and no family or friends to help make decisions on their behalf. Many are mentally ill, addicted, homeless, or suffering from dementia, although patients without these problems can also be at risk.

“They are the most vulnerable patients,” said Thaddeus Mason Pope, JD, PhD, director of the Health Law Institute and professor of law at Mitchell Hamline School of Law in Saint Paul, Minn. “And research suggests that that the decisions clinicians are making for this patient population often aren't carefully vetted.”

Photo by Thinkstock
Photo by Thinkstock.

The number of unbefriended older adults is increasing as the population ages and more elderly people are single and childless or estranged from family members than in the past.

Yet more studies on the scope of the problem are needed, experts say. One often-cited study published in Annals of Internal Medicine in 2007 found that in the ICUs of seven medical centers, 5.5% of patients who died lacked a surrogate decision maker and an advance directive. For those patients, most decisions about life support were made by physicians without institutional or judicial review.

The American Geriatrics Society (AGS) recently offered some guidance to clinicians, health care institutions, and policymakers on improving medical decision making for unbefriended older adults. In an updated position statement published in the January 2017 Journal of the American Geriatrics Society, an expert panel called for a national effort to create legal standards for surrogate decision making that could potentially be adopted by all states.

Currently, there is great variability in legal approaches to unbefriended patients. For example, several states have no laws that specify a hierarchy of individuals who may serve as default surrogate decision makers for incapacitated patients without an advance directive. Among the states that do have such laws, some allow the patient's physician to act as a surrogate decision maker in certain circumstances, while others prohibit it.

The variations in laws across states create confusion for clinicians, potentially resulting in treatment delays or the prolongation of burdensome treatments, according to the authors of the statement.

The statement also included several clinical practice recommendations. It proposed that the process of arriving at a treatment decision for an unbefriended older adult should be systematic and fair and should include capacity assessment, a search for potentially unidentified surrogate decision makers, and a team-based effort to ascertain the patient's treatment preferences by synthesizing all available evidence.

“We recommend that, unless an urgent decision needs to be made, medical treatment decisions for unbefriended older adults should be reached by team consensus. For instance, a hospitalist could involve another attending physician, an available surrogate, social workers, and the hospital's ethics committee in the decision-making process,” said Timothy W. Farrell, MD, associate professor of medicine in the division of geriatrics at the University of Utah School of Medicine in Salt Lake City and physician investigator at the VA Salt Lake City Geriatric Research, Education, and Clinical Center, who coauthored the AGS position statement.

Relying on individual clinicians to make treatment decisions for unbefriended patients without appropriate and systematic oversight poses a greater risk for introducing bias or conflicts of interest into the decision-making process, Dr. Farrell said.

Searching for a surrogate

Typically, once a health care team has completed a neuropsychological evaluation and determined that an unbefriended hospital patient lacks capacity for complex medical decisions, hospital social workers begin searching for someone who knows the patient and could serve as a surrogate decision maker.

The AGS position statement suggests that health care teams make an effort to identify “nontraditional” surrogates, such as a close friend or neighbor, when family members are not available and when permitted by state law.

While the search for a suitable surrogate is ongoing—or if the search has failed—clinicians can gain insight into a patient's treatment preferences by reviewing primary care records and talking with anyone who knows or has cared for the patient in the past. This could be a primary care physician, the director of nursing at the assisted living facility where the patient resided, a social worker at an agency involved with the patient's care, or a clergy member, Dr. Farrell said.

In addition, while they cannot independently make complex medical decisions, even incapacitated patients can help inform their own care, said Denise M. Connor, MD, ACP Member, assistant clinical professor at the University of California, San Francisco. The AGS statement also encouraged the involvement of patients as much as possible.

“As long as the patient isn't in the final stages of dementia, you can sometimes get a sense of what they want just by talking with them. These preferences can then be considered when weighing the benefits versus harms of a given intervention,” said Dr. Connor, who is also an attending physician on the hospitalist service at San Francisco VA Medical Center. “If certain members of the care team at the hospital—like the nurse, speech therapist, or dietician—have developed a particularly good rapport with the patient, you can ask them to assist in those discussions,” she advised.

If the social workers haven't been able to find a surrogate decision maker who knows the patient well and the patient is likely to remain incapacitated, often the next step is for the hospital to petition a court to appoint a public guardian. In most states, a court can appoint a public guardian to make medical decisions for an unbefriended, incapacitated patient.

There can be several problems with this approach, however, including that the process can take weeks or months, that the public guardian has never met the patient before, and that public guardians are not always well trained or adequately monitored, said Dr. Connor.

Alternative solutions

In Indiana, which doesn't have a state public guardianship program, one safety-net hospital developed an innovative program that uses trained volunteers as surrogates for unbefriended, incapacitated patients.

Launched in 2010 at Wishard Hospital in Indianapolis (now known as Sidney and Lois Eskenazi Hospital), the program recruits volunteers from a variety of backgrounds, including attorneys, physicians, nurses, and medical and law students. (Originally known as the Wishard Volunteer Advocates Program, it moved in 2013 to the Center for At-Risk Elders, a nonprofit law firm, and was renamed the CARE Volunteer Advocates Program.)

Unbefriended patients in need of surrogate decision makers are referred to the program by social workers and physicians. An attorney on CARE's staff quickly petitions the county court to appoint the program as a temporary guardian for the unbefriended patient.

Under the supervision of CARE staff, the volunteer advocate then meets regularly with the patient, participates in care plan conferences, helps make medical decisions that reflect the patient's preferences, and assists in making living arrangements for the patient. If no other appropriate surrogate guardian is found after 90 days, the program can become the patient's permanent guardian.

“Advocates who are authorized by court order have access to an incapacitated person's property, home, or bank accounts, depending on the extent of the order, and can find out information in a person's apartment or home that might lead them to friends, family, such as address books,” said Robin Bandy, JD, MA, founding director of the program. “They can also talk to people who the person knew before the illness.”

The program has expanded to serve several hospitals in Indianapolis. It was funded mainly by a grant for its first three years, but participating hospitals now pay CARE for guardianship services, Ms. Bandy explained.

“We found that hospitals want to pay for the services because the volunteers are able to help expedite and secure benefits for patients who otherwise wouldn't have a payer for hospital services and long-term facility care, and because the volunteers can sometimes move patients to another facility who would otherwise stay in the hospital,” said Ms. Bandy. “The WVAP/CARE Advocates Program model helps ensure quality medical care and prevent unnecessary hospital days by providing a decision maker for patients who would otherwise have no one to authorize procedures, palliative care, or admission to a long-term care facility.”

Many communities have a similar unmet need for guardianship services for unbefriended patients, she noted, suggesting that the same model could work elsewhere as long as a program has volunteers supervised by well-trained case managers, quick and adequate access to legal support, and a sustainable funding source.

Focusing on prevention

Researchers who study unbefriended patients, including the authors of the AGS statement, say that more efforts are needed to prevent older adults who still have the capacity for making medical decisions from ending up without a surrogate decision maker or a clear outline of their care preferences. Dr. Connor said that hospitalists can play a role in assisting patients who are at risk of becoming unbefriended.

“I've added it to my mental checklist to talk with elderly patients who are cognitively intact before they are discharged about completing an advance directive and appointing a decision maker who knows their goals,” she said.

Hospitalists can also help by letting such a patient's primary care physician or case manager know that the patient could benefit from receiving some assistance with advance care planning, Dr. Farrell added.

Dr. Pope suggested that hospitalists who want to improve and standardize their hospitals' overall processes for making treatment decisions for unbefriended patients start a conversation with hospital leadership or the hospital ethics committee.

“You could ask them to read the position statement from the AGS and guidelines from other professional societies, and use those as a launching point for discussions about whether you can do better for your unbefriended patients,” said Dr. Pope. “What we're all trying to figure out is how to develop a decision-making approach that balances due process and fairness against responsiveness and efficiency.”