Many Ethics Consults Involve ‘Unbefriended’ Patients

The number of “unbefriended” patients, those who lack decisional capacity and are without surrogates, has surged recently.¹ Researchers conducted a retrospective chart review of 156 patients who petitioned for public guardianship from 2014 to 2019. They found cases rose from eight in 2014 to 44 in 2019. Neurocognitive disorders and psychotic disorders were the most common conditions that impaired capacity.

“Ethics consults in these cases are crucial,” says Amber R. Comer, PhD, JD, assistant professor of health science at Indiana University in Indianapolis.

Many hospital policies allow the clinical care team to change an incapacitated/unbefriended patient’s code status when it is clinically and ethically appropriate to do so. Typically, it requires a consensus among the clinical care team, ethics, the chief medical officer, and the legal department. “The group is tasked with weighing what is in the patient’s best interest regarding the patient’s code status,” Comer says. “Multiple perspectives are important for ensuring that decisions are made in the best interest of the patient.”

If the group agrees it is in the patient’s best interest to not proceed with a resuscitation in the event the patient’s heart stops, then the patient’s code status can be changed. “Decisions to change an unbefriended patient’s code status can only occur at the hospital level if the situation is urgent,” Comer notes.

If the situation is not urgent, it is appropriate to pursue a court-appointed guardian to make medical decisions on behalf of the incapacitated/unbefriended patient. Usually, pursuing a court-appointed guardian is not a quick process. It often takes weeks to apply due diligence in attempting to find a legal surrogate medical decision-maker and to pursue the appropriate legal channels in court. “This time-consuming process has the ability to delay treatment,” Comer says.

If a patient lacks decision-making capacity and has a clear medical emergency, hospitals have protocols in place to proceed with treatment. “However, medical teams often encounter situations that are nonemergent but still important and very difficult to navigate without decision-makers,” says Erika Leemann Price, MD, MPH, an associate clinical professor at the University of California, San Francisco and hospitalist at the San Francisco VA Medical Center.

Examples of these less-urgent cases include initiation or continuation of dialysis treatments; initiation of chemotherapy or radiation therapy for newly diagnosed malignancy; and nonemergent surgical treatments, such as spine surgery for stabilization in patients with spinal cord compression and repeated falls. The treatments in question are important, but patients might reasonably choose to forgo treatment after consideration of the risks and benefits and their own care goals. “In these situations, an ethics consultation can be helpful,” Price says.

Ethicists can articulate the ethical principles at stake with treatment decisions by asking these questions: What preferences has the patient expressed in the past? To what extent is the patient expressing a preference, even if he or she lacks full decisional capacity? Would the treatment itself cause distress or harm to the patient in their current state in a way that could outweigh the benefit?

Since it is not a medical emergency, clinicians often do not request help from ethics. “The temptation is to avoid making the decision, push it down the road until the medical condition progresses and the situation reaches more of a crisis point, which is not the ideal approach,” Price observes.

An added concern is that in these nonurgent cases, patients probably do not meet criteria for inpatient stays.

“But medical teams struggle with the knowledge that if they do not advocate for inpatient treatment, or at least for a clear decision to be made, these patients are at extremely high risk for loss to follow-up,” Price reports. These challenging cases pose some ethical concerns:

• The process for public guardianship can take a long time. When clinicians make the decision to keep unrepresented patients in the hospital while awaiting guardianship, they are committing those patients to prolonged (months to years) hospital stays. “They are then exposed to the usual hazards of prolonged hospitalization — deconditioning, infection, blood clots, and all of the detrimental mental and physical effects of being in a confined indoor space,” Price says.
• In most states, there is no clear legal framework for keeping medically stable unrepresented patients in the hospital while awaiting guardianship. If patients are impaired but physically attempt to leave, hospital care teams often lack guidance on how to respond. “This scenario leads to moral distress, confusion, and conflict among team members,” Price says.
• Guardianship does not facilitate the establishment of long-term care options. For patients who are unrepresented, require long-term care, and have no financial resources, discharge options in the community are going to be extremely limited. “In these cases, patients may remain in the hospital for prolonged periods, even after having guardianship established,” Price adds.

Considering all these ethical concerns, Price says “it’s critical for hospitals to think about how they are approaching guardianship for patients.”

Ideally, clinicians identify surrogate medical decision-makers and establish financial surrogates before a crisis happens. The San Francisco VA Medical Center clinicians work with an attorney to help assess patients’ capacity to assign financial decision-makers and identify and complete applications for other sources of support. The attorney also provides assistance in cases of attempted “eviction by hospitalization.”

“Often, these proactive measures can help preserve patients’ autonomy and avoid the need for formal guardianship,” Price says.

In several cases, a patient’s landlord sent the patient in reporting a fall injury, and then said the patient could not return home. “Medical teams aren’t trained in eviction law, so they don’t necessarily know that is not legal,” Price says.

However, the lawyer can engage with the patient pro bono, and help the patient pursue legal action, if needed, when these unlawful eviction attempts are made.

For patients who do need guardianship, it is helpful to recognize that medical teams do not have the training required to complete a capacity declaration. In California, the paperwork requires the person filling out the form to have at least two years diagnosing and treating major neurocognitive disorders. “A standard pathway can be useful for going through the process in the inpatient setting,” Price offers. “It is a stretch to say the interns just out of medical school have this degree of expertise. But geriatricians certainly qualify.”

The inpatient geriatrics consultant team might take responsibility for conducting the formal assessment and completing the paperwork. Ethics does not need to be involved every time guardianship is appropriate. “But it is important to have an open line of communication in those situations where their expertise and input are helpful,” Price says.

Most unrepresented patients are living with marginal housing and psychiatric comorbidity in addition to cognitive decline and medical illness. It also is helpful to engage in dialogue among inpatient clinicians and outpatient providers, case managers, and social workers. Working together, these groups can facilitate a transition from inpatient care to the community and provide input on options for housing. “For us, that dialogue is formalized in a weekly interprofessional team meeting,” Price says.²

Ethicists at Marietta, GA-based Wellstar Health System try to be involved with all unbefriended patients. “These patients’ vulnerable nature leads to numerous ethical dilemmas, particularly around medical decision-making and questions regarding these patients’ best interests,” says Jordan Potter, PhD, HEC-C, supervisor of the Wellstar Fellowship in Clinical Ethics.

Recent ethics consults have examined whether it is ethically permissible to change the patient’s code status and whether to provide burdensome medical interventions with questionable benefit. Other recent consults concerned whether it is ethically appropriate to withdraw a life-sustaining treatment from an unbefriended patient and discharge issues if the patient is homeless.

Public guardianship itself does not solve all these problems. “Some guardianship organizations limit the medical decisions they are willing to make for unbefriended patients,” Potter notes.

Even with a public guardian in place, financial resources are needed. “Without these kinds of resources, hospitals still face significant ethical dilemmas when attempting to adequately care for unbefriended patients,” Potter explains.

It is not ideal to have individual physicians make ethically complex decisions at the bedside. “This is inherently problematic, given concerns surrounding potential biases and a lack of objectivity,” Potter says.

It is important to ask a more impartial third party to assist. Most protocols and policies for decision-making for unbefriended patients require some level of ethics consultation service or ethics committee involvement. “Usually, these combine ethics support with two physicians’ attestation that the requested medical intervention, treatment, or decision is medically appropriate and in the patient’s best interests,” Potter reports.

REFERENCES

1. Babb E, Matrick A, Pollack T, Rosenthal LJ. Hospital guardianship: A quality needs assessment of “unbefriended” patients who lack decisional capacity. J Acad Consult Liaison Psychiatry 2021;62:538-545.
2. Lam K, Price EL, Garg M, et al. How an interdisciplinary care team reduces prolonged admissions among older patients with complex needs. NEJM Catalyst 2021;2. doi: https://doi.org/10.1056/CAT.21.0204.