Getting medical care can exhaust older patients

Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice.

Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the runaround that so many people face when they interact with America’s uncoordinated health care system. Putting together the care she needed to recover became a part-time job for Gilliam.

“The burden of arranging everything I need – it’s huge,” Gilliam said. “It leaves you with such a sense of mental and physical exhaustion.”

Gilliam’s orthopedic surgeon, who managed previous difficulties with her left knee, saw her the same afternoon but told her, “I don’t do ankles.”

He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Physical therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

So many medical appointments

“The good news is we know so much more and can do so much more,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is the system has gotten overwhelmingly complex.”

That complexity is compounded by the proliferation of guidelines for medical conditions, clinician specialization and financial incentives that reward more care, said Ishani Ganguli, an associate professor at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems – say, heart disease, diabetes and glaucoma – interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having tests, visiting doctors, undergoing treatments or procedures, seeking care in emergency rooms or spending time in the hospital or rehabilitation facilities. The data is from 2019, before the COVID-19 pandemic disrupted care patterns.

The study found that slightly more than 1 in 10 seniors spent a much larger portion of their lives getting care – at least 50 days getting services a year.

“Some of this may be very beneficial and valuable for people and some of it may be less,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic, has for many years warned about the “treatment burden” that patients experience. This burden includes arranging appointments, finding transportation, getting medications, communicating with insurance companies, paying bills, monitoring health at home and following recommendations such as dietary changes.

Four years ago – in a paper titled “Is My Patient Overwhelmed?” – Montori and colleagues found that 40% of patients with chronic conditions such as asthma, diabetes and neurological disorders “considered their treatment burden unsustainable.”

When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.

Older patients’ difficulties are compounded by medical practices’ increased use of digital phone systems and electronic patient portals – frustrating for many seniors to navigate – and the time pressures afflicting physicians. “It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do. “We often have little sense of the complexity of our patients’ lives,” several physicians wrote in a 2022 paper on reducing treatment burden.

Trying to lighten the load

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021.

At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

In the next year, medical crises became common for Hartnett’s fiercely independent parents. When a physician changed her mom’s or dad’s plan of care, the siblings had to procure new medications, supplies and medical equipment, and arrange new rounds of occupational, physical and speech therapy.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett said. “An incredible amount of coordination needed to happen.”

Hartnett moved in with her parents during the last six weeks of her father’s life. He passed away in March 2022. Her mother died four months later.

So, what can older adults and family caregivers do to ease the burdens of health care?

To start, be candid with your doctor if you think a treatment plan isn’t feasible, said Elizabeth Rogers, an assistant professor at the University of Minnesota Medical School.

“Be sure to discuss your health priorities and trade-offs: What you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or patient navigator can help arrange multiple appointments and tests on the same day to minimize travel. These professionals can also connect you to community resources, such as transportation services.

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need? And ask for written materials that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’" said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

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