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Gilliam’s orthopedic surgeon, who had treated previous problems with her left knee, saw her that 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. Out of convenience, Gilliam asked to have the scans done at a hospital near his home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when he called to make an appointment. He only arrived after several more calls. Meanwhile, scheduling visits to the physical therapist for his knee and ankle several times a week took him hours.
“The burden of organizing everything I need is enormous,” Gilliam told me. “It leaves you feeling physically and mentally exhausted.”
The price charged by the American healthcare system is, in some respects, the price of extraordinary progress in medicine. But it is also evidence of the poor fit between the capabilities of older adults and the demands of the health care system.
How specialized medicine complicates care
“The good news is that we know a lot more and can do a lot more for people with a variety of conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with care. “The bad news is that the system has become overwhelmingly complex.”
That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward greater medical care and specialization among doctors, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.
“It is not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” he said. If someone has multiple medical problems (for example, heart disease, diabetes, and glaucoma), their healthcare interactions multiply.
Ganguli is the author of a new study showing that Medicare patients spend approximately three weeks a year getting medical exams, visiting doctors, undergoing medical treatments or procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation centers. (Data is from 2019, before the Covid-19 pandemic altered care patterns. If any services were received, that counted as one day of healthcare contact.)
That study found that just over 1 in 10 people aged 65 and older, including those recovering from or managing serious illnesses, spent a much larger portion of their lives receiving care: at least 50 days a year.
“Some of this may be very beneficial and valuable to people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we ask seniors to do and whether that’s realistic.”
Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has been sounding the alarm for years about the “treatment burden” patients experience.
In addition to the time spent receiving medical care, this burden includes making appointments, finding transportation to doctor visits, obtaining and taking medications, communicating with insurance companies, paying medical bills, and following recommendations such as dietary changes.
Four years ago, in an article titled “Is my patient overwhelmed?” — Montori and several colleagues found that 40 percent of patients with chronic diseases such as asthma, diabetes and neurological disorders “felt their treatment burden was unsustainable.”
When this happens, people stop following medical advice and report 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.
The difficulties of older patients are compounded by medical practices’ increased use of digital telephone systems and electronic patient portals (both of which are difficult for many older people to navigate) and time pressures on physicians. “It’s becoming more difficult for patients to access doctors who can resolve problems with them and answer questions,” Montori said.
Meanwhile, doctors rarely ask patients about their ability to do the work they are asked to do. “We often have little idea of the complexity of our patients’ lives, and even less of how the treatments we provide (to achieve goal-directed guidelines) fit into the web of our patients’ daily experiences,” several doctors wrote in a paper 2022 in reducing the burden of treatment.
Consider what Jean Hartnett, 53, of Omaha and her eight siblings went through after her 88-year-old mother, who was also caring for her ailing father, suffered a stroke in February 2021.
The year after the stroke, both of Hartnett’s parents, fiercely independent Nebraska farmers, suffered setbacks and medical crises became common. When a doctor changed your mother’s or father’s care plan, it was necessary to purchase new medications, medical supplies and equipment, and organize new rounds of occupational, physical and speech therapy.
Neither parent could be left alone when the other needed medical attention.
“It wasn’t unusual for me to take one parent home from the hospital or doctor’s visit and pick up the ambulance or one family member down the road to take the other,” Hartnett explained.
Hartnett moved in with his parents for the last six weeks of his father’s life, after doctors decided he was too weak to undergo dialysis. He passed away in March 2022. His mother died months later, in July.
So what can older adults and family caregivers do to ease the burden of healthcare?
To start, be honest with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, assistant professor of internal medicine at the University of Minnesota Medical School. Ask which interventions are most important to staying healthy and which might be expendable.
Doctors can adjust your treatment plan, stop medications that don’t produce significant benefits, and schedule virtual visits if you can handle the technology requirements. (Many older adults cannot.)
Ask if a social worker or patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of getting to and from medical facilities. These professionals can also connect you with transportation and other services. (Most medical centers have such staff, but doctor’s offices do not.)
If you don’t understand how to do what your doctor wants you to do, ask: What will this mean on my part? How long will this take? What kind of resources will I need to do this? And ask for written materials, such as self-care plans for asthma or diabetes.
“I would ask a doctor, ‘If I choose this treatment option, what does that mean not only for my cancer or heart disease but also for the time I will spend receiving care?’” Harvard’s Ganguli said. “If they don’t have an answer, ask them if they can make an estimate.”
KFF Health NewsFormerly known as Kaiser Health News or KHN, it is a national newsroom that produces in-depth journalism on health issues and is one of KFF’s core operating programs.