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Daughters make more decisions on parents' care, study finds

Family members are making decisions for nearly half of elderly patients who end up in the hospital, and in most cases daughters are the ones who must make the tough choices, a new study finds.

Because elderly hospital patients are frequently too impaired to make their own medical decisions, many need a surrogate decision maker. Researchers found that daughters step in for almost 60 percent of those cases, according to the report published Monday in JAMA Internal Medicine.

And that’s a big problem because hospitals currently aren’t organized to include family members in the care of older patients, said the study’s lead author Dr. Alexia Torke, an associate professor of medicine at Indiana University.

“The way hospitals are structured right now is they are set up for patients who can make their own decisions,” Torke said. “Physicians talk to patients during daily bedside rounds when the family isn’t there.”

Hospitals generally view family members as “visitors,” Torke said. They are often haphazard about calling families and updating them on the patient’s status.

“Hospital structure needs to change so that families are an integral part of care,” Torke said. “And hospitals should be calling them on a daily basis since nearly half the time families need to be a part of the care team.”

Torke and her colleagues interviewed physicians caring for 1,083 elderly adults who had been hospitalized and who needed to make at least one major medical decision within the first 48 hours of being admitted to one of two Midwestern hospitals. More than 47 percent of those patients needed a surrogate to help them make choices, while 23 percent had all decisions made by a surrogate. Daughters were the ones most commonly tapped to make choices, at 59 percent, followed by sons at 25 percent and spouses at 21 percent.

Few patients had written their wishes down prior to hospitalization: Only 7.4 percent had a living will and just 25 percent had a health care representative documented in their medical record.

Torke’s message to families: If you have an elderly parent, talk to them, at least in a general way, about what kinds of care they would want and who they would want to be making decisions for them if they become incapacitated.

“The most important thing is choosing a health care representative,” Torke said. “In our study we found that in most families the decision makers had not been officially designated by the patients.”

The new numbers didn’t surprise Jennifer Wolff, an associate professor in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health.

“But it’s an incredibly valuable study from the perspective of documenting something that is very common but largely hidden and outside mainstream policy making,” Wolff said. “It’s highlighting how the system, as it’s currently structured, is failing families, patients and physicians. My sense is there is a lot of frustration among family members about a lack of communication.”

One big problem for health care providers is knowing where their responsibility to protect patient privacy ends and where their responsibility to the family begins, Wolff said.

“This is touching on a whole bunch of issues that are uncomfortable for providers.”