Improving care for unrepresented older adults

It's estimated that 70,000 to 330,000 older adults in the United States could be considered unrepresented, and given the aging of the population, those numbers are only expected to grow.

In fact, many older adults are just one medical crisis away from becoming unrepresented, said Timothy W. Farrell, MD, chair of the American Geriatrics Society (AGS) ethics committee and corresponding author of a recent AGS position statement. The statement, published in November 2024 by the Journal of the American Geriatrics Society, defines unrepresented older adults as those lacking each of three criteria: 1) the decisional capacity to provide informed consent for a particular medical treatment; 2) a relevant advance directive or the capacity to create one; and 3) representation from a surrogate decision-maker, such as a family member, friend, or legally authorized party.

“Many people satisfy the criteria for the second and third part of the definition of ‘unrepresented.’ They don't have a completed advance directive—that's the majority of people in the U.S.—and they don't have a surrogate decision-maker or anyone they can turn to,” said Dr. Farrell, who is professor of medicine and geriatrics division associate chief for age-friendly care at the University of Utah School of Medicine in Salt Lake City and a physician investigator at the VA Salt Lake City Geriatric Research, Education, and Clinical Center (GRECC). “All it takes [to become unrepresented] is to lose criterion number one.”

Dr. Farrell and the first author of the statement, Joseph Dixon, MD, site medical director for palliative care at Trinity Health IHA medical group in Livonia, Mich., recently spoke to I.M. Matters about improving care for unrepresented older adults.

Q: The AGS's previous position statement on this topic in 2017 referred to “unbefriended” rather than unrepresented older adults. Why the change?

A: Dr. Dixon: There are several reasons, but I'll start with number one, which is that this really squares much better with the current medical literature out there. Over the past decade and maybe longer, the literature has been skewing towards using this terminology, moving from unbefriended to unrepresented. It's also just a more accurate term, when it comes down to it. “Unbefriended” suggested that older adults did not have friends, which was just factually inaccurate in many cases, and “unrepresented” seemed to fit the facts better, that an older adult may not have a surrogate representative to speak on their behalf. The term felt more value-neutral as well. Although “unbefriended” was used with good intent, it carried kind of a stigma.

Q: Who usually determines whether a specific older adult is unrepresented?

A: Dr. Dixon: Somebody has to start asking questions of the patient and determine, first of all, that they do not have capacity to make decisions for themselves. That's really important. It seems very obvious, but sometimes people are not really doing a really detailed job of assessing capacity … even [among] older adults who are just kind of nodding along and don't really have a great grasp of their medical circumstances and really aren't rising to the level of providing informed consent.

Once it's been determined that an older adult does not have decision-making capacity, it's really important to know both your state and institutional policies on how to determine who would be a surrogate representative. If no family members are coming in and we can't sort that out, then we're relying on, typically, our social work colleagues to start investigating that and determining based on state and institutional policies who could fill that surrogate role. In cases where we cannot find those people, that's where we truly have a situation where somebody is unrepresented.

Q: What generally happens once that decision is made?

A: Dr. Dixon: Unfortunately, what we lay out in the paper is very dependent both by state and institution. Some states have very clear guidance on this, and others have little to none. If somebody is truly unrepresented, one of the things that we and other societies tend to recommend is thoughtful policy that would be committee-informed and based on principles of fairness and justice, making sure that people aren't just deciding based on their preconceived notions what to do on behalf of a patient who is not able to tell them what is important to them.

Dr. Farrell: This really presents an opportunity for the inpatient side of the health system and the outpatient side to talk to each other. One of the things that's coming down the pike is Medicare's Age-Friendly Hospital Measure. A really important part of that, the very first of five domains that comprise this measure, is identifying older adults' health care goals. That's something that outpatient clinicians can help with.

A lot of the work that we're doing at the health system level is making sure that there's a prominent place in the electronic health record where the “what matters” information is available in a very easily accessible location. If you have a great goals-of-care discussion, but it's not documented, not accessible, it doesn't do the admitting attending physician any good. Health systems will need to figure out increasingly better ways of eliciting and documenting older adults' goals on both the inpatient and outpatient sides.

Q: The statement recommends that nonconventional surrogates be allowed to advocate for older adults. Can you talk a bit about that?

A: Dr. Dixon: It's really, really critical to allow so-called nontraditional surrogates. Many states will follow a default next-of-kin process, defaulting to typically someone like a spouse, then adult children, then expanding out from there. Depending on which state you're in, some states do not leave any space to allow the involvement of people who are not in that next-of-kin succession.

A lot of the time that works fine. But in an important subset of cases, older adults have intentionally severed ties with their family because of, for example, a history of abuse, or just for whatever reason they do not have a connection with their family. In certain cases, the family may not see eye to eye at all and would make very different decisions than the patient might want, so by not allowing the involvement of family of choice, we would be actually handing over the reins of decision making to somebody who would be making decisions that may be very much outside of what matters to the older adult. We think that on a moral, ethical level, nonconventional surrogates should absolutely be allowed and permitted.

Dr. Farrell: One of the other situations we see is that there's no family available because the patient has outlived their family members. In these cases, the only person who really knows that person's values might be a close friend, a member of the clergy, or might be the director of the assisted living facility or other long-term care facility. Maybe they've lived in a group home setting for decades and that person is very well known to that facility. You can see how restricting this to the succession of blood relatives is a potential misstep in terms of acting in alignment with a person's wishes.

The other thing that I find, too, is that even if people do have an advance directive, sometimes they filled it out 10 years ago and their spouse or whoever they designated passed away. They've got this advance directive, but it doesn't help you, because the person named as the proxy is no longer living or no longer available. That's, again, something we can look for on the outpatient side. I do go through the files of patients I've seen for a long time and say, “Since your partner passed away last year, we really should update this document.”

Q: What happens when an older adult has been designated as unrepresented and a family member or surrogate turns up later in the process?

A: Dr. Farrell: My first thought, speaking from the outpatient setting, is that when someone appears who hasn't appeared in a long time, my antenna goes up, my radar goes up a little bit. I do worry about someone trying to exploit the patient. Obviously, it's extremely context-dependent. But I've actually had a case of someone assuming essentially a fraudulent identity to try to assume decision-making powers for a patient and take over their property. This gets very, very sticky. Also, I would add, if someone appears in a situation where the patient lacks capacity, you have to think about HIPAA and privacy rules. Again, that's a place where you probably need to be involving legal counsel or risk management, because just giving away that information could be very damaging.

Q: What can physicians do to improve care for unrepresented older adults?

A: Dr. Dixon: In the hospital, it's tough because so much of it starts beforehand, but regarding improving care, it's important to gather any sort of information, make sure that we're partnering with social work and case management and getting the ethics committee on board early to try to collect any information we can about these patients. Did they go to a church? What church was that? Can we contact any acquaintances that maybe wouldn't be their representative, but somebody who knew something about the unrepresented older adult and could tell us a little bit about the way that they lived and the things that might be important to them? Anything that we can collect can help us guide their care better on their behalf.

Dr. Farrell: In the outpatient setting, usually there's the luxury of some additional time. Outpatient clinicians can try to be proactive and not wait for the crisis to happen, have the advance care planning conversation but have it very, very early, and also take advantage of other opportunities to discuss this issue. ... For example, the Medicare Annual Wellness Visit is a great time to discuss goals and update advance directives. There are advance care planning billing codes that help incentivize asking these questions. But geriatrics is a team sport, and I would be relying on my care managers and social workers to help with this. I don't think physicians should feel they have to take this on on their own.

Q: How can institutions and clinicians make sure that at-risk older adults don't become unrepresented?

A: Dr. Dixon: Prevention, doing all that we can to prevent people from becoming unrepresented, is so critical in outpatient settings, inpatient settings, and in long-term care facilities and short-term rehabs as well. … People, as they age, get into the territory where the different dementias become more and more common, and there's been increasing research about the loneliness epidemic and people being disconnected from their communities. We know that these risks are increasing. The time is now for all of us to get on board to address this problem before it gets a lot worse.

Dr. Farrell: Just to go back to where we started, it makes it harder to study this population if even the medical community hasn't been able to agree on the terminology to describe them. It underscores their exquisite vulnerability. If you can't name them, you can't claim them. You can't advocate for a group that you can't describe well. The AGS position statement, in advocating for the term “unrepresented,” is trying to help with that. This is the extreme example of a population that is vulnerable. The health care system in our society is really only as good as the care we provide for this population. If we can figure this out for unrepresented older adults, providing them with really excellent age-friendly care, hopefully that will also permeate the culture of the whole health system.