Susanne Gilliam, 67, was walking across her driveway to pick up the mail in January when she slipped and fell on a patch of black ice.
Pain shot through her left knee and ankle. After calling her husband on her phone, she barely managed to get back home.
And then began the reversal that so many people face when they encounter America’s uncoordinated health care system.
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. For convenience, Gilliam requested the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital had no doctor’s orders when she called for an appointment. It only came through after several more phone calls.
Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists only work on one body part per session, so she needs separate visits for her knee and her ankle several times a week.)
“The burden of arranging everything I need is enormous,” Gilliam told me. “It gives you a feeling of mental and physical exhaustion.”
The toll on America’s health care system is in some ways the price of extraordinary advances in medicine. But it is also evidence of the poor fit between the capabilities of older people and the demands of the health care system.
“The good news is that we know so much more and can do so much more for people with different conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is that the system has become overwhelmingly complex.”
That complexity is exacerbated by the proliferation of guidelines for individual medical conditions, financial incentives that reward more medical care, and specialization among physicians, says 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,” she said. When someone has multiple medical problems, for example heart disease, diabetes and glaucoma, interactions with the healthcare system multiply.
Ganguli is the author of a new study showing that about three weeks a year, Medicare patients undergo medical tests, visit doctors, undergo treatments or medical procedures, seek care in the emergency room or spend time in the hospital or rehabilitation centers. (Data is from 2019, before the Covid pandemic disrupted care patterns. If services were received, that counted as a day of health care contact.)
That study found that just over 1 in 10 seniors, including those recovering from or experiencing serious illness, spent a much larger portion of their lives caring for them – at least 50 days per year.
“Some of this may be very useful and valuable to people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking of older adults and whether that’s realistic.”
Victor Montori, 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 health care, this burden also includes arranging appointments, finding transportation for medical visits, obtaining and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home and following recommendations such as dietary changes.
Four years ago – in an article entitled “Is My Patient Overwhelmed?” – Montori and several 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’ problems are compounded by medical practices’ increased use of digital phone systems and electronic patient portals – both frustrating for many seniors to navigate – and the time constraints physicians face. “It is becoming increasingly difficult for patients to access doctors who can work with them to solve problems and answer questions,” Montori said.
Meanwhile, doctors rarely ask patients about their ability to perform the work asked of them. “We often have little appreciation of the complexity of our patients’ lives and even less insight into how the treatments we provide (to achieve goal-oriented guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a report from 2022. document on reducing the treatment burden.
Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother suffered a stroke while shopping at Walmart in February 2021.
The older woman was caring for Hartnett’s father at the time, who had kidney disease and needed help with daily activities such as showering and going to the toilet.
In the year after the stroke, both of Hartnett’s parents—fiercely independent farmers living in Hubbard, Nebraska—suffered setbacks, and medical crises became common. When a doctor changed her mother or father’s care plan, new medications, supplies, and medical equipment had to be purchased and new rounds of occupational, physical, and speech therapy had to be arranged.
Neither parent was to be left alone when the other needed medical attention.
“It was not unusual for me to bring a parent home from the hospital or a doctor’s visit and pass the ambulance or a family member on the highway to bring the other in,” Hartnett explained. “An incredible amount of coordination had to be done.”
Hartnett moved in with her parents for the last six weeks of her father’s life after doctors decided he was too weak to undergo dialysis. He died in March 2022. Her mother died months later, in July.
What can older people and caregivers do to ease the burden of healthcare?
For starters, be honest with your doctor if you don’t think a treatment plan is feasible and explain why you feel that way, says Elizabeth Rogers, assistant professor of internal medicine at the University of Minnesota Medical School.
“Make sure you discuss your health priorities and tradeoffs: what you could gain and what you could lose if you forego certain tests or treatments,” she said. Ask which interventions are most important to keep you healthy, and which may be replaceable.
Doctors can adjust your treatment plan, stop medications that aren’t providing significant benefits, and arrange virtual visits if you can meet the technology requirements. (Many older adults can’t do that.)
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 traveling to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that can assist you. (Most medical centers have these types of staff, but doctors’ offices do not.)
If you don’t understand how to do what your doctor wants you to do, ask the following questions: What does this mean on my part? How much time will this take? What resources do I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that will help you understand what is expected of you.
“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 spend in care?'” Harvard’s Ganguli said. “If they don’t have an answer, ask if they can provide an estimate.”