Published in the June 2014 issue of Today’s Hospitalist
IF YOU THINK that surrogate decision-makers in the hospital are primarily for ICU patients to discuss code status, you need to expand your definition of surrogacy. Surrogate decision-makers are playing a role in nearly half of older inpatients, and surrogates are weighing in on everything from code status to discharge planning.
According to a study published in the March issue of JAMA Internal Medicine, researchers found that nearly half of the patients 65 and over they studied had some help from a surrogate decision-maker within 48 hours of admission. And nearly half of those surrogates made all decisions for patients.
Of those patients who needed a surrogate’s intervention, more than half needed help making a decision that involved code status. Just under half needed help addressing procedures and operations, and half also needed help making decisions about the discharge process.
Alexia M. Torke, MD, lead author of the study and associate professor of medicine at Indiana University in Indianapolis, says that she was surprised that so many patients needed help from a surrogate. She was also surprised by the number of patients outside of the ICU who likewise needed a surrogate’s help.
While 71% of patients in the ICU needed help in decision-making, 43% of patients on the wards also needed some assistance from a surrogate. Because there are so many more patients on the wards than in ICUs, Dr. Torke noted, hospitalists are more likely to encounter patients who need a surrogate on the floors than in the ICU.
“Hospitalists who see patients on the general medicine wards are going to encounter these patients a lot,” Dr. Torke explains.
To determine which patients needed the help of a surrogate decision-maker, Dr. Torke’s team took a unique approach. Instead of trying to measure patients’ mental capacity, researchers asked attending physicians or housestaff if they needed to include a surrogate in decision-making for a patient. The result, says Dr. Torke, was a very real-world snapshot of which patients needed help in making decisions.
“We tried to focus on the reality of the clinical situation as it happens on the ward,” explains Dr. Torke, who is also associate director of the Indiana University Center for Aging Research. The lucid 75-year-old who had family members in the hospital, for example, would not necessarily be categorized as needing a surrogate decision-maker just because her family was there for support.
Dr. Torke says that while she was surprised at how many patients were identified as needing the help of a surrogate decision-maker, the number is still probably low.
“We know from other studies that physicians tend to overestimate patients’ capacity to make decisions,” Dr. Torke says. “Patients nod and smile and go along with our plan, but we often do not conduct an in-depth assessment of their decision-making capacity. So our number is still probably an underestimate of the number of patients who actually need some help making decisions.”
Another interesting finding: Patients’ daughters are much more likely to care for patients than sons. More than half of the surrogates (59%) were daughters, compared to 25% who were sons and 21% who were spouses.
“There have not been a lot of data on surrogates in the inpatient setting,” Dr. Torke says, “but we know from the caregiving literature that most caregivers in the outpatient setting tend to be daughters. It is not surprising that most of the people making decisions in the hospital are also the daughters.”
New ways to communicate
Also not a surprise: Patients who needed decision-making help from surrogates tended to be sicker and have more complex conditions than other patients. Dr. Torke says the need for a surrogate makes these patients exponentially more difficult to manage.
“It is more complicated to make decisions when you are working with a surrogate,” Dr. Torke explains. “The whole hospital is set up for patients who can give their own histories and make their own decisions.”
“Physicians and their clinical teams walk around seeing patients and expect to make decisions right there during rounds,” she continues. “But the reality is that family members may or may not be there during rounds. They have jobs or other commitments and cannot be at the hospital, so the way things are set up is not really conducive to surrogate decision-making.”
For Dr. Torke, the study results are a clear sign that hospitals need to find new ways to communicate with surrogate decision-makers.
“There should be an expectation that the surrogate decision-maker will be called on a regular basis, possibly even daily, to be updated about the clinical situation and ensure that decisions are made,” she says. “We know that family members sometimes feel that they have trouble getting hold of their physicians to get updates and that they are getting information erratically. The hospital structure does not have a built-in mechanism for getting in touch with family members and keeping them up to date.”
In another study that Dr. Torke was part of, researchers talked to 35 surrogate decision-makers and found that most really appreciated frequent information. “They could tell amazing stories about both when they received information about their loved ones and how awful it was when they did not receive information,” she points out. “One thing we took away from that study was that surrogate decision-makers really value regular updates.”
Needed: system solutions
Dr. Torke wants to be clear about one thing: She doesn’t think that hospitalists need to work yet another phone call into their already-packed schedule, reaching out to surrogates.
“No one should think that this is a simple problem that is another task that falls on the shoulders of the hospitalist,” Dr. Torke explains. “This is a structural issue. This has to be something that the system does.”
She points out that data have found that surrogate decision-makers don’t want to hear from only physicians.
“Something we learned from another study in which we interviewed surrogate decision-makers is that they appreciate contact from many members of the health care team,” Dr. Torke says. “It does not have to necessarily be the physician who makes the call. This is something that could be shared among the multidisciplinary team.”
Edward Doyle is Editor of Today’s Hospitalist.