Many clinicians are seeing more unrepresented adults without decision-making capacity. These patients stay in the hospital longer and experience delayed treatment and palliative care.1 Typically, guardianship is used as a last resort for adults who lack capacity and who have not nominated a healthcare proxy or durable power of attorney.
“The guardian may not be familiar with their wishes and values. As a result, these adults may receive care that they would not have chosen,” says Heather Connors, PhD, executive director of the Center for Guardianship Excellence.
Connors and colleagues surveyed 81 clinicians and 23 guardians in Massachusetts. They found 66% of unrepresented adults stayed in the hospital longer, 52% experienced delays in receiving palliative care, and 49% experienced treatment delays.
Clinicians reported guardianship did help resolve issues such as care transitions, medical treatment, quality of life, housing, finances, and safety. However, clinicians also reported finding a guardian was difficult. Sometimes, many people are contacted, but no one takes responsibility. Surveyed clinicians reported an average of five refusals, which took an average of 17 days, before they identified a willing guardian.
“Delays result in individuals staying in hospitals longer, which may mean they are unable to receive appropriate rehabilitation care,” Connors notes.
Clinicians also reported they personally experienced distress due to watching a patient suffer, or feeling they were providing care that was more harmful than helpful. Clinicians were frustrated by the inability to act because there was no decision-maker. “The findings made it clear that better supporting unrepresented individuals will have wide-ranging benefits,” Connors reports.
Ethicists are seeing a range of issues arise during consults involving unrepresented patients, including conflicts over how aggressive treatment should be, whether to treat at all, how to discharge, and how to follow up with compliance with treatment. “Creating a template for actions to take related to unrepresented persons who present to the hospital would be great to develop proactively. A subset of the ethics group could take this on,” suggests Pamela B. Teaster, PhD, director of the Virginia Tech Center for Gerontology.
The slow pace of the courts and the speed at which decisions must be made in real time are in conflict, according to Leslie M. Whetstine, PhD, professor of philosophy at Walsh University in North Canton, OH. “While physicians can use ‘implied consent’ during an emergency, waiting for this trigger obviates proactive treatment plans,” Whetstine says.
Ethics consultation services can help develop policies on the needs of unrepresented patients as well as the treating team.
“Policies that use a collaborative and multidisciplinary process, involving representation from social services, ethics, and the clinical team, can support transparent recommendations that are less vulnerable to individual bias,” Whetstine says.
At Savannah, GA-based Memorial Health University Medical Center, clinicians are seeing more unrepresented patients.
“At any given time, we have several unrepresented patients and at least one of them will be in one of the ICUs. This has been the case for the last five or so years, and seems to be increasing steadily as poverty increases and homelessness increases,” reports Brian H. Childs, MDiv, PhD, HEC-C, chair of the department of bioethics and medical humanities at Mercer University School of Medicine in Macon, GA.
It can take a month or more to secure a court-appointed guardian to make health decisions. Even when it happens, if there is nobody who knows the patient and there is no advance directive, clinicians are forced to rely on a “best interest” standard. “That’s a pretty weak standard, because we really don’t know the values of the patient; but also, the best interest standard is an arguable one,” Childs says.
Generally, a revolving team of hospitalists and residents treat these patients. Providers can change weekly or even daily. “You get different attitudes on the part of the therapeutic team on what may be the best interest of the patient,” Childs says.
There also is widespread disagreement among physicians on how to define “ineffective” medical care. “With the law being either silent or vague on defining this, it is logical that physicians might not always agree on the issue,” Childs notes.
While all this is sorted out, the patient is kept on life-sustaining interventions. “It’s always a long and protracted process. You are wondering: Are we doing this patient any favors? What are we going to do when they are no longer acute?” Childs asks.
Typically, these patients are uninsured, making discharge planning difficult, particularly if skilled nursing care or ventilator care is necessary. Even after a court-appointed guardian is put in place, that individual usually does not have sole authority to make a decision to withdraw life-sustaining interventions. Without a durable power of attorney or an advance directive in place, those decisions hinge on the physician’s opinion. Ethicists are closely involved in this process. “Physicians are pretty well-attuned to wanting to have ethics involved,” Childs says.
Memorial Health is trying a few new approaches to address the needs of unrepresented patients. Mercer University School of Medicine is partnering with magistrates and public health officials to put in place a streamlined process for court-appointed guardians.
“We are also working with the faith community, which often have homeless ministries, to facilitate some kind of discharge plan if at all possible,” Childs says.
The medical school also is trying to be proactive by pre-emptively securing advance directives for the homeless population. During their community medicine rotation, medical students visit homeless camps and shelters to help people with advance directives or to designate a healthcare power of attorney or proxy. Regardless of the situation, the hospital’s policy is palliative care begins at admission.
“We don’t delay palliative care. We’ve got to maintain the dignity of the patient. They’re homeless, but they still deserve the best medical interventions that we are able to provide, and that certainly includes palliative care,” Childs argues.
During weekly ethics rounds in the ICU, if the patient is unrepresented and lacks decision-making capacity, ethicists urge the clinical team to think ahead. “We want to be pre-emptive. We don’t want to initiate something if we have an expectation that it is going to reduce mortality, but is going to maintain morbidity,” Childs says.
At rounds, ethicists take note of cases where it becomes apparent there is no intervention that is going to prevent morbidity. “The other thing that we struggle with is that the physician has no moral obligation to provide ineffective medical care,” Childs explains.
Physicians might understand this from a medical point of view, but also at the same time fear the law will not support them if a patient or family member does file a lawsuit claiming negligence. As rounds continue, ethicists stress palliative care should be maintained at its highest level, but that no life-prolonging measures should continue if that is what is medically indicated. “Physicians are so risk-averse and think that somebody is going to come out of the woodwork and sue them for malpractice,” Childs says. “We really do need to have the support of administration and risk management to help us with that.”
Another group of researchers surveyed 92 clinicians who care for older adults in inpatient and outpatient settings about their clinical challenges and ethical dilemmas.2 “Clinicians face special challenges in caring for highly vulnerable unrepresented patients. Until recently, clinicians’ experiences in caring for this population were unknown, especially in the outpatient setting,” says Timothy W. Farrell, MD, AGSF, geriatrics division associate chief for age-friendly care at the University of Utah School of Medicine.
The analysis of the responses revealed five themes: Patients’ health risk characteristics, care decisions facing the team, psychosocial considerations, patient outcomes, and the burden on providers. “Clinicians’ survey responses revealed that they experience significant burden, including moral distress, when making healthcare decisions when surrogates are not available,” Farrell reports.
The responses also indicated health systems are burdened by the additional time and personnel required to meet unrepresented patients’ needs. Farrell says the most important message for clinicians, especially in the outpatient setting, is to conduct advance care planning proactively. The best possible outcome is to prevent patients from becoming unrepresented in the first place.
Farrell notes ethicists are an “invaluable resource in helping to meet the needs of unrepresented patients.” They can help by educating clinicians about ethical and practical issues related to this patient population and by reviewing hospital policies to ensure procedural fairness for this population. Also, during ethics consults, address short-term questions (e.g., whether to extubate an unrepresented patient in the ICU with a poor prognosis for survival) and long-term questions (e.g., the optimal location of care for an unrepresented patient upon hospital discharge).
Ethicists are frequently becoming involved in unrepresented patients’ cases, reports Seuli Brill, MD, associate professor in the department of internal medicine at the Ohio State University College of Medicine. Some patients also present with intellectual or developmental disabilities that create communication barriers. Substance use disorders and dementia also cause communication issues.
As for what clinical ethicists can do, Brill says trying to address the issue proactively is crucial. Clinical ethicists can advocate for and implement policies encouraging advance care planning and identification of legal next of kin. These policies work best if they encompass non-emergency settings, such as outpatient clinics.
“Even if you have perfect processes, the challenge is that unrepresented patients will show up in crisis, in the emergency department and inpatient settings, because they may not be touching the healthcare system in other avenues,” Brill explains.
Thus, it is important clinical ethics committees ensure policies include activation of multidisciplinary teams, such as social workers, neurology, geriatrics, or bioethics, tailored to patient needs. “Unrepresented patients are a broad category, but everybody faces unique challenges,” Brill notes.
Assessment of decision-making capacity also is important. “Decision-making capacity is really what drives what’s going to be done next,” Brill says.
Although any physician should be able to conduct a decision-making capacity assessment, in more complex cases (e.g., if an unrepresented patient presents with autism), specialists are helpful. Brill also has seen unrepresented patients struggle with trusting healthcare providers. Ethicists are uniquely qualified to help re-establish trust, but ethicists are not at the bedside continually. Patient advocates offer the patient someone to talk with outside the healthcare team.
“A lot of times, unrepresented patients have gone through a whole lot of trauma and broken relationships and breaches of trust,” Brill acknowledges. “That’s why they are coming to you without an advocate.”
REFERENCES
1. Catlin CC, Connors HL, Teaster PB, et al. Unrepresented adults face adverse healthcare consequences: The role of guardians, public guardianship reform, and alternative policy solutions. J Aging Soc Policy 2022;34:418-437.
2. Dassel KB, Edelman LS, Moye J, et al. “I worry about this patient EVERY day”: Geriatrics clinicians’ challenges in caring for unrepresented older adults. J Appl Gerontol 2022;41:1167-1174.
Ethicists are seeing a range of issues arise during consults involving unrepresented patients, including conflicts over how aggressive treatment should be, whether to treat at all, how to discharge, and how to follow up with compliance with treatment. Creating a template for actions to take related to unrepresented persons who present to the hospital is a proactive first step.
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