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BY: JULIE TROCCHIO, BSN, MS

Understanding and acting on what matters to older patients is one of the pillars of the Age-Friendly Health System initiative, which is working to develop a model of care for seniors that will spread to 20 percent of U.S. hospitals and health systems by 2020. It is an initiative of The John A. Hartford Foundation and the Institute for Healthcare Improvement in partnership with the American Hospital Association and the Catholic Health Association of the United States. It has been created to improve health care for older persons.

As part of the initiative, CHA helped arrange a focus group with seniors to explore what matters to them when they receive health care. The group was formed by inviting seniors in suburban Maryland to participate in a discussion about their experiences with and hopes for the health care system. While we asked for volunteers over age 65, the group of 12 was all well over 70, mostly women, and all had extensive experience — both good and bad — getting health care. 

What mattered to members of the group?

"Listen to me."

"Respect what I know."

"Keep me out of the hospital."

How could the health system be better?

"Know what you are doing."

"Talk to one another."

"Explain things to me."

"Understand who I am." 

"Answer the phone!" No one liked telephone answering services with long menus of choices or being put on hold for long periods. "When I call and say I need to talk to the doctor, I mean it," said one group member. "I know when it is important to talk with a physician, not the receptionist." 

The group highly valued expertise. All agreed that having a geriatrician, a physician who specializes in treating older people, was critically important to getting good care. "I want my doctors and others who take care of me to know what they are doing, to have the expertise," said a group member.

Coordination of care also was important, and many people agreed that it seemed their providers did not cooperate or coordinate with each other. "If I have more than one specialist, they should talk to one another," said a group member.

Managing medications and knowing the details about them was an important issue to members of the group. "I need to know what my medicines are for and what the side effects are likely to be." A group member reported that she feared she was becoming seriously ill until she discovered that her symptoms were expected side effects of a new medication she was taking. "They should have told me," she said, "and we should have discussed if it was worth it."

"Know me," was another frequent comment, so we asked, "What should a provider know about you?"

Among the answers: "That I live alone." "I am responsible for the care of someone else." "I am deaf in one ear." "I have end-of-life plans." "Know what I am able to do and not just what is wrong with me." "That I used to be a nurse and know a thing or two."

It was clear that the older people in the group often felt dismissed by their health care providers, who sometimes left them with the sense that their life experiences and even knowledge of their own care was unimportant. They wanted to be partners with their health care providers and together work on a plan to getting and keeping well.

Several members said they were afraid to go to the emergency room because they feared being given too many unneeded tests or being admitted to the hospital. Many shared that they had few options but to go to the ER at critical times. "When you call the doctor's office and get the answering machine, you hear, `if this is an emergency, go to the emergency room,' but sometimes I just need medical advice — right away."

"I needed a new inhaler, but they tested me for everything," said one person.

Another told a story of helping her husband escape through a back door to avoid being admitted. "Luckily I knew how to get out. I used to work there," said the retired nurse. Many agreed they needed a strategy for not getting admitted to the hospital if at all possible on occasions when they had to go to the emergency room.

Results of the focus group, which was supported by the SCAN Foundation, will be incorporated in the Age-Friendly educational materials. The SCAN Foundation works to promote aging with dignity and independence.

CHA is a partner in the Age-Friendly Health System Initiative, supporting and promoting its work, and maintains a website, www.chausa.org/eldercare/creating-age-friendly-health-systems. This column will regularly feature news of the initiative.

JULIE TROCCHIO, BSN, MS, is senior director, community benefit and continuing care, the Catholic Health Association, Washington, D.C.