Suzanne Gilliam, 67, was walking down her driveway to get her mail in January when she slipped and fell on black ice.
I felt pain in my left knee and ankle. After calling her husband on her phone, she struggled back to her home.
And so began the spiral that so many people face when interacting with America's uncoordinated health care system.
Gilliam's orthopedic surgeon, who had previously fixed problems with Gilliam's left knee, examined him that afternoon but told him he “didn't perform ankle surgery.”
He referred her to an ankle specialist and ordered new X-rays and an MRI. For convenience, Gilliam asked to be scanned at a hospital near her home in Sudbury, Massachusetts. But when she called for her appointment, her hospital didn't have a doctor's order. Moreover, she finally got through after several calls.
Coordinating the care needed for recovery, including physical therapy, became Gilliam's part-time job. (The therapist only treats her one part of her body per session, so she had to come in for her knees and ankles separately several times a week.)
“It’s a huge burden to arrange everything we need,” Gilliam told me. “I feel exhausted both mentally and physically.”
The sacrifices made by the American health care system are, in part, the price of extraordinary advances in medicine. But it is also evidence of a poor fit between the abilities of older people and the demands of the health care system.
“The good news is that we are learning more and more about people with a variety of conditions,” said Thomas H. Lee, chief medical officer at Press Gainey, a consulting firm that tracks patients' medical experiences. “We have done much more, and we can do even more.” “The bad news is that the system is overwhelmingly complex.”
Ishani Ganguly, an associate professor at Harvard Medical School, said the complexity is exacerbated by the proliferation of guidelines for individual conditions, financial incentives that reward more care, and the specialization of clinicians. .
“It's not uncommon for older patients to have three or more cardiologists who schedule regular appointments and tests,” she says. Interaction with the health care system increases when a person has multiple medical problems, such as heart disease, diabetes, or glaucoma.
Ganguly said Medicare patients spend about three weeks a year undergoing medical tests, visiting doctors, receiving treatment and medical procedures, receiving treatment in emergency rooms, and spending time in hospitals and rehabilitation facilities. He is the author of a new study showing that (Data is from 2019, before the coronavirus pandemic disrupted healthcare patterns. If you receive any service, it counts as a day of medical contact.)
The study found that just over 1 in 10 older people, including those recovering from or managing a serious illness, spend a much larger portion of their lives in care, at least 50 days a year. was found to be receiving care.
“Some of them may be very useful and valuable to people, and others may not be so important,” Ganguly said. “We don’t have enough conversations about what we want from our seniors and whether it’s realistic.”
Victor Montoli, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has long warned about the “burden of care” patients experience. This burden includes time spent seeking medical care, arranging appointments, securing transportation to medical facilities, obtaining and taking medications, communicating with insurance companies, paying medical bills, and maintaining health at home. This includes monitoring your condition and following recommendations such as dietary changes.
Published four years ago in a paper titled “Are my patients overwhelmed?” —Montri and several colleagues found that his 40% of patients with chronic conditions such as asthma, diabetes, and neurological conditions “believe the treatment burden is unsustainable.”
When this happens, the researchers found, people are less likely to follow medical advice and report a decreased quality of life. Particularly vulnerable are older people with multiple medical conditions, low levels of education, economic instability, and social isolation.
The increasing use of digital phone systems and electronic patient portals in healthcare settings, both of which are cumbersome for many older adults to use and the time pressures they place on physicians, is making it difficult for older patients to use digital telephone systems and electronic patient portals. The difficulties are getting worse. “It's becoming increasingly difficult for patients to access clinicians who can problem-solve with them and answer their questions,” Montoli says.
Clinicians, on the other hand, rarely ask patients about their ability to perform the tasks required of them. “We often have little understanding of the complexities of patients' lives, and how the care we provide fits into the web of patients' daily experiences (to arrive at guidelines for goals). “There is even less insight into whether this is compatible,'' several doctors wrote in a 2022 paper. A paper on reducing the burden of treatment.
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. Let's think about.
At the time, the older woman was caring for Hartnett's father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.
In the year following the stroke, both Hartnett's parents, avid independent farmers in Hubbard, Nebraska, suffered setbacks and a medical crisis unfolded. When doctors changed a mother or father's care plan, they had to procure new medications, supplies, and medical equipment, and arrange for new rounds of occupational, physical, and speech therapy.
Neither parent can be left alone if the other parent needs treatment.
“It was not uncommon for me to bring one parent home from a hospital or doctor's appointment, passing an ambulance, or the family picking up the other parent on the freeway.” Ms. Hartnett explained. “It took an incredible amount of adjustment.”
Hartnett moved in with her parents for the last six weeks of her father's life after doctors deemed him too weak to undergo dialysis. He passed away in March 2022. Her mother died a few months later in July.
So what can seniors and family caregivers do to reduce the burden of healthcare?
“First, if you think your treatment plan is not viable, speak up with your doctor and explain why you feel that way,” said Elizabeth Rogers, assistant professor of internal medicine at the University of Minnesota Medical School.
“Be sure to discuss your health priorities and tradeoffs: what you stand to gain and what you stand to lose by discontinuing certain tests or treatments,” she said. Ask which interventions are most important to maintaining your health and which may become expendable.
If technical requirements can be managed, doctors can adjust treatment plans, discontinue medications that are not significantly effective, and arrange virtual consultations. (There are many elderly people who cannot do that.)
Ask your social worker or patient navigator if they can arrange multiple appointments or tests on the same day to minimize the burden of traveling to and from the medical center. These professionals can also connect you with local resources that may be helpful, such as transportation services. (Most medical centers have this type of staff, but doctors' offices do not.)
If you don't know how to follow your doctor's instructions, ask these questions: “What does this involve on my end?” How long will this take? What resources will I have to do this? Also, things like asthma or diabetes self-management plans? Ask for written materials to help you understand what to expect.
“I ask my clinicians, 'If I choose this treatment, what does that mean, not only for my cancer or my heart disease, but also for the time I spend treating it?'” says Harvard University. Ganguly says. “If they don’t have an answer, ask if they can give you a quote.”
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(KFF Health News is a national newsroom that produces in-depth journalism on health issues, one of KFF's core operating programs, and an independent source of health policy research, polling, and journalism. is.)
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