Judith Graham | (TNS) KFF Health News
Susanne Gilliam, 67, slipped on some black ice while going to get the mail in January, causing her left knee and ankle to hurt.
After calling her husband for help, she managed to make it back home with difficulty.
This led to a series of frustrating experiences that many people go through when dealing with the disorganized healthcare system in the United States.
Gilliam's orthopedic surgeon, who had previously helped with her knee issues, saw her that afternoon but said he couldn't help with her ankle.
She was then referred to an ankle specialist who ordered new X-rays and an MRI. Gilliam wanted to get the scans done at a hospital close to her home, but there were issues getting the doctor's order for the appointment.
Arranging the care she needed for recovery, including physical therapy, became a part-time job for Gilliam. She needed separate visits for her knee and ankle several times a week.
Gilliam mentioned, "The effort of organizing everything I need is enormous. It leaves you feeling mentally and physically drained."
The toll the American healthcare system takes on patients is partly due to the incredible advancements in medicine. However, it also reflects the mismatch between older adults' abilities and the demands of the healthcare system.
Thomas H. Lee, chief medical officer at Press Ganey, acknowledged, "We have gained extensive knowledge and abilities in treating various conditions, but the system has become extremely complicated."
The intricacy is heightened by the numerous guidelines for different medical conditions, financial incentives that encourage more medical care, and specialization among clinicians, explained Ishani Ganguli, an associate professor of medicine at Harvard Medical School.
Ishani Ganguli, a Harvard Medical School professor, noted, "It's common for older patients to have three or more heart specialists with regular appointments and tests. For those with multiple medical problems, interactions with the healthcare system become even more frequent."
Ganguli is the author of a new study revealing that Medicare patients spend around three weeks a year undergoing medical tests, visiting doctors, receiving treatments or medical procedures, seeking care in emergency rooms, or staying in hospitals or rehabilitation facilities. The data is from 2019, before the covid pandemic disrupted care patterns. Any services received counted as a day of healthcare contact.
The study discovered that slightly over 1 in 10 seniors, including those recovering from serious illnesses, spent a significant part of their lives receiving care— at least 50 days a year.
Ganguli emphasized, "Some of this may greatly benefit and be valuable for people, while some may be less essential. We don't discuss enough about the realistic expectations for older adults in terms of what we're asking them to do."
Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has been warning about the challenges that patients face when getting medical care for many years. These challenges include not only the time spent at medical appointments, but also tasks like arranging appointments, finding transportation, getting and taking medications, dealing with insurance, paying bills, monitoring health at home, and following medical recommendations like changes to diet.
Four years ago, Montori and some colleagues published a paper called "Is My Patient Overwhelmed?"Is My Patient Overwhelmed?” — Montori and several colleagues found that 40% of patients with chronic conditions like asthma, diabetes, and neurological disorders felt that the burden of their treatment was too much to handle.
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 made worse by medical practices’ increased use of digital phone systems and electronic patient portals — both 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 and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.
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 while shopping at Walmart.
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.
During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.
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 explained. “An incredible amount of coordination needed to happen.”
Hartnett moved in with her parents during the last six weeks of her father’s life, after doctors decided he was too weak to undertake dialysis. He passed away in March 2022. Her mother died months later in July.
So, what can older adults and family caregivers do to ease the burdens of health care?
To begin, tell your doctor honestly if you believe a treatment plan isn’t possible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School.
“Make sure to talk about your health priorities and trade-offs: what you might gain and what you might lose by skipping certain tests or treatments,” she said. Ask which interventions are most important for keeping you healthy, and which might be unnecessary.
Doctors can change your treatment plan, stop medications that aren’t providing significant benefits, and set up virtual visits if you can handle the technological requirements. (Many older adults can’t.)
Ask if a social worker or a patient navigator can assist you in scheduling multiple appointments and tests on the same day to reduce the burden of going to and from medical centers. These professionals can also help you access community resources, such as transportation services, that might be helpful. (Most medical centers have staff like this, but physician practices do not.)
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 to do this? And ask for written materials, such as self-management plans for asthma or diabetes, 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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(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)
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