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Late-in-life care: the stressful, complicated world of surrogate decision-makers

“Helping patients make difficult decisions for themselves is complicated enough, but making decisions for a third person is far and away more complicated,” says researcher Dr. Alexia Torke.

Currently, some 13 million older Americans are hospitalized each year — a number that will only grow as the U.S. population continues to age. Within 48 hours of being hospitalized, almost half of all adults aged 65 or older will need someone else — a trusted relative or friend — to help them make at least one medical decision.

This article is part of a yearlong occasional series on late-in-life health care — when chronic illness or a constellation of medical problems can cause a cascade of new needs, complications and worries.

Within 48 hours of being hospitalized, almost half of all adults aged 65 or older will need someone else — a trusted relative or friend — to help them make at least one medical decision, and almost one-fourth will need that surrogate to make all of their medical decisions, according to the findings of a study published earlier this year in JAMA Internal Medicine.

The most common decision made by surrogates in the study involved life-sustaining care — whether to resuscitate the older adult if his or her heart stops beating, for example. But the surrogates often had to make other important decisions as well, such as whether the patient should undergo a particular procedure or operation and where the patient should be discharged to after leaving the hospital.

Yet only 25 percent of the more than 1,000 hospitalized older adults who were involved in the study had a document in their medical records that designated which person they wanted to make those decisions for them should they be unable to do so themselves. Thus, family members or friends often find themselves thrust unexpectedly into a role that other research has found can be extremely stressful, even leading to post-traumatic stress and depression.

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Currently, some 13 million older Americans are hospitalized each year — a number that will only grow as the U.S. population continues to age. That means millions of people, either this year or at some time in the future, will find themselves making crucial medical decisions for someone they care about. To get a deeper understanding about what the research says about this growing phenomenon — and about how older adults, family members, physicians and hospitals can better prepare themselves for the surrogate decision-making process — MinnPost interviewed the lead author of the JAMA Internal Medicine study, Dr. Alexia Torke, an associate professor of medicine at Indiana University School of Medicine. An edited version of that interview follows.

MinnPost: In your research, you found that nearly half of hospitalized older adults over the age of 65 have decisions made in the hospital by surrogates. Who are those surrogate decision-makers, and what kind of decisions are they making?

Alexia Torke: Most [59 percent] were daughters. Next were sons [25 percent] and spouses [20 percent]. So, in general, it’s family members who are making decisions for the patients. As far as the kinds of decisions that they face, over half of surrogates face a decision about life-sustaining care, mostly what’s called “code status” or what would happen if the patient’s heart or breathing were to stop while they’re in the hospital. But they face a lot of other decisions, too, such as decisions about procedures and surgery, which were faced by nearly half [of the people in the study]. And about half also faced decisions about discharge planning, such as going to a nursing home or having home health after the hospital stay.

MP:  That was an interesting finding because I don’t think most people are aware of all the different kinds of decisions they may have to make for the patient. It’s not just about resuscitating a terminally ill patient.

AT: Yes, I think that’s really important. The decisions about life-sustaining care can be, of course, among the most difficult for family members, and we hear about them because they’re quite dramatic. But it turns out the decisions that family members have to be ready for is much broader.

MP:  Can you provide a few examples?

Dr. Alexia Torke
Dr. Alexia Torke

AT:  Sometimes when patients are in the hospital they’ll have to consider whether to have a surgery. It can be anything from a heart surgery to an amputation of a leg. As you can imagine, it would be ideal if the patient could participate in these decisions, but again we often found that they can’t. Another common one is whether or not to go to a nursing home either for a short stay or a long stay after discharge. Again, that is a very common one that families face.

MP: You also found that many decisions were being made by the patient and the surrogate together, but it was the surrogate who was communicating those decisions to the doctor.

AT:  Right. When we started out with this research, I think that in our own minds we kind of divided the world into patients who could participate in decision-making and patients who couldn’t. It turns out there’s a very large middle group, and they vary in a couple ways. One is that some patients have their mental capacity wax and wane during their hospital stay. So they may be able to participate in a decision one day, and then the next day they become confused and can’t participate. That’s one possibility. A second possibility is that the patient may have some cognitive impairment and participates in the decision, but the physician really doesn’t think the patient has the ability to make the decision independently. So, it turns out that a kind of three-way communication — one in which there’s a patient, a surrogate decision-maker and a clinician — is actually pretty common. Of course, that kind of communication is even more complicated because there are three people involved. 

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MP: One of the things you say in your study is that “the presence of a surrogate requires fundamental changes in the way that clinicians communicate and make decisions.”  What do you mean by that, and what specifically needs to change?

AT: One thing that needs to change is the perspective of clinicians, sort of how we approach decisions. A whole lot of medical decision-making is based on a patient who has what we call autonomy or the capacity to make decisions for themselves. When a patient is making decisions independently, we ask that patient, “What do you want? What’s most important in your life?” and they’re able to tell us. Surrogate decision-making is a lot more complicated. We try to start with the question, “What do you think the patient would have wanted?” Sometimes [the surrogates] know, but, actually, most of the time they don’t. The surrogate and the clinician then have to think together about what’s best for the patient or who the patient was as a person and the kinds of things that they might want if we could ask them — even though the patient might not have expressed their preferences. That kind of decision-making is actually much more common.

The second really important change [that’s needed] involves the hospital structure. It’s set up for a patient who is sitting in the bed and can answer questions and make decisions independently. We don’t routinely call family members, and when we do, it’s a little haphazard. We don’t have a daily routine of family rounds or any other system in place to make sure we reach family members. Sometimes family members will be at work or unavailable when the medical team is rounding, and the team doesn’t reach them at all.

The whole hospital is structured for patients who can make their own decisions, and we really need to rethink this given how common it is that patients need family help.

MP: Why have hospitals developed such a structure? Is it because surrogates weren’t needed much in the past?

AT: I think several things have made surrogates more common. One is the aging of the population. Older adults are at risk for not being able to make their own medical decisions due to [age-related] chronic conditions like Alzheimer’s disease, but also because they’re more [likely to have] delirium and other kinds of cognitive impairment when they get admitted [to the hospital].

The second reason is the extremely fast pace of hospital care. We just try to rush patients through their care and to be extremely efficient, but, as a consequence, there isn’t a lot of time. I think if we had days to wait for family members to come in there wouldn’t be such a problem, but we’re trying to be quick and efficient, and it just doesn’t allow time for families to be able to visit. 

A third thing is that the rise of intensive care really created a new group of patients who are in the hospital on machines or sedated. That’s a major change in the last 40 or 50 years. In the past, patients who were so sick that they couldn’t communicate were at much higher risk of death. They didn’t survive as long in the hospital.  

MP: Do clinicians like to talk to surrogates? Are they trained to do it?

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AT: No. In fact, some of my prior research focused on physician experiences with surrogates. Physicians are not really trained routinely at how to communicate with family members, and they are often uncomfortable [doing so]. I think that’s because communication and decision-making [with surrogates] are more complicated. Again, you can’t ask the patient. In some of our prior research, physicians commonly reported that they feel stressed talking and making decisions with surrogates.

MP: What can we do to help improve the process? Let’s start with what the hospitals and the medical community can do.

AT: I think hospitals need to build in communication with families as a key part of the process of care. When patients are seriously ill, calling a family member, identifying an appropriate surrogate and updating them about the patient’s condition should be a standard part of care rather than something we do as an afterthought or only when a decision needs to be made. Also, physician rounding needs to be more flexible so that it can accommodate and incorporate the family. We need to treat the family as an integral part of the care team and not just as a visitor to the hospital. 

MP: Is that because rounds are often very early in the morning, before the family gets there?

AT: Yes, they often are, or they just occur kind of when the medical team can get together. That’s understandable. [Doctors] often have other responsibilities during the day. But it means that it’s very unpredictable from the perspective of the family. Just letting the family know when the team is going to round would be a step in the right direction, or even making a plan to call a family member at a certain time if they can’t be at the hospital.

MP: Are most people prepared for the role of surrogate decision-maker when they go into the hospital with a loved one?

AT: That’s a really important question. Many people are not prepared. Yet any older adult who enters the hospital has a nearly 50 percent chance of needing a family member to make decisions for them. I think older adults should talk with their close family members — or whoever would be making decisions for them — about the kind of care they would want if they became seriously ill. They should let their family members know what kinds of decisions they would want made. 

There’s new thinking in advanced care planning. It’s not just the event of filling out a form, like a living will. It’s the process of discussion and decision-making that goes on over time. We need to focus more attention on preparing the surrogate for the role they’re going to play in the future. In some of our other research we interviewed surrogate decision-makers, and some of them do talk about the stress and the fact that they didn’t know what the patient wanted or about how they had never expected that they would be in this situation.

Preparing surrogates for the role they’re going to face is really important. And for older adults, it’s important that they talk to family members about what they would want if they should ever need decisions made for them. 

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MP: In background information in your study you said that only 25 percent of patients have a formal advance directive, such as a living will or a health-care proxy, in their medical records.  That would be a place to start, of course, but you’re saying it’s more about the conversation than the document.

AT: It is. There was another study that came out recently by [Dr.] Maria Salveira at [the University of] Michigan. They found that a much higher percentage of older adults [than the percentage of older adults in Torke’s latest study] had [designated] a health-care representative. It’s important to note that we were actually looking at the percentage of the time [a health care representative document] can actually be found in the medical record. That’s one of the documented problems with advanced directives: They’re often not available when they’re needed.

But it’s also true that the document is not enough. We advocate for conversation so that the older adult lets their family member know the kinds of decisions they would want them to make or maybe just how they would want decisions to be made. Some patients would like to leave their family member a great deal of leeway to make decisions for them, and I think that’s fine as long as the family member knows that and is prepared for that role.

MP: When the individual is actually in the hospital making those stressful decisions, are there things they can do that would make the situation better for their loved one, for themselves and for the rest of their family?

AT: Family members should know first of all that they do have a right as a surrogate decision-maker to get information about the patient. Hopefully, the medical staff will provide that easily, but family members sometimes have to be firm in insisting that they get fully informed.

MP: Is that true even if they don’t have a [health-care representative] document with their name on it? Can they still insist on getting access to all the medical information?

AT: That’s an important point. Our study found that only 20 percent had a healthcare representative document, and so the rest made decisions because they were the legal next of kin. Every state has laws about who makes decisions when there’s no healthcare representative document in place. It differs state by state, but the majority of our surrogates did not have a form authorizing them to make decisions. They were thrust into the role. A family member should expect that they’ll get regular, reasonable updates about their family member; however, they do need to understand that clinicians are busy, and they may have to ask, for example, for a physician to call them back later, or they may have to ask the medical team to set up a time to meet with them.

So I guess the first thing I would say is that family members should get regular information. The second thing I would say is that making medical decisions for another person can be highly stressful, and family members should seek support both from other people in their family and also from hospital staff, which may include social workers, chaplains and nurses. Many of the surrogates we interviewed found the best amount of support from the staff in the hospital. Seeking that support can be really valuable for family members. 

MP: What got you into this research? 

AT: As a physician, helping patients make difficult decisions for themselves is complicated enough, but making decisions for a third person is far and away more complicated. Those were the cases that I always struggled with when I was a [medical] resident, and so I just thought that this is one of the most challenging areas in medicine — and one of the most interesting — to research. I also think it’s extremely important that we do it well. [Surrogate decision-making is] going to become more and more common as the population ages and greater numbers of patients face critical illness. We really need to continue to develop more sophisticated approaches to help families make these difficult decisions.  

This series is funded through a regrant by Allina Health from the Robina Foundation. It is conducted in conjunction with media partners Ampers and Twin Cities Public Television (tpt), whose documentaries are focusing on Minnesotans enrolled in a multiyear Allina study involving patients at this time of life. A new episode, “Beyond the Doctor,” the third of six, will premiere Sunday, Aug. 24, at 6:30 p.m. on tpt 2.