Gilliam’s orthopedic surgeon, who had dealt with previous difficulties with her left knee, had seen her that afternoon but told her he “didn’t do ankle surgery.” He referred her to her ankle specialist and ordered her new girlfriend x-rays and her MRI. For her convenience, Gilliam asked her to undergo a scan at a hospital near her home in Sudbury, Massachusetts, but when she called for her appointment, her hospital did not have a doctor’s order. Ta. Moreover, she finally got through after several calls. On the other hand, she spent hours scheduling physical therapist visits for her knees and ankles 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 a sense, the price of extraordinary advances in medicine. However, this is also evidence of a poor fit between the abilities of older people and the demands of the health care system.

How specialty medicine complicates care

“The good news is that we are doing more to help people with a variety of conditions,” said Thomas H. Lee, chief medical officer at Press Gainey, a consulting firm that tracks patient care experiences. We know we can do 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 a proliferation of guidelines for individual conditions and financial incentives that reward more medical care and clinician specialization. .

“It’s not uncommon for older patients to have three or more cardiologists who schedule regular appointments and tests,” she says. Interaction with health care 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 COVID-19 pandemic disrupted healthcare patterns. Any service received is counted as a day of contact with a healthcare provider.)

The study found that just over one in 10 people aged 65 and over, including those recovering from or managing a serious illness, spend a far greater proportion of their lives in care, at least 50 days a year. It turned out that he was 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, as well as arranging appointments, securing transportation to medical facilities, obtaining and taking medications, communicating with insurance companies, paying medical bills, changing diets, etc. This includes following the recommendations of

Published four years ago in a paper titled “Are my patients overwhelmed?” —Montri and several of his colleagues found that his 40% of patients with chronic conditions such as asthma, diabetes, and neurological conditions “consider the treatment burden to be unsustainable.” .

When this happens, the researchers found, people are less likely to follow their doctor’s advice and report a decreased quality of life. Particularly vulnerable are older people with multiple medical conditions, low levels of education, economic insecurity, and social isolation.

The challenges faced by older patients are exacerbated by the increasing use of digital phone systems and electronic patient portals in healthcare settings, both of which are difficult for many older people to navigate, and by time pressures on physicians. I am. “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 our patients’ lives, and how the care we provide fits into the web of their daily experiences (to arrive at guidelines for our goals). “There is even less insight into the fit,” several doctors wrote in the paper. 2022 paper on reducing treatment burden.

What Omaha resident Jean Hartnett, 53, and her eight siblings went through after their 88-year-old mother (who also cared for her sick father) suffered a stroke in February 2021. Let’s think about what we did.

In the year after the stroke, both Hartnett’s parents, fiercely independent farmers in 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 could be left alone when the other needed 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.

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. 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 may also provide transportation and other services. (Most medical centers have this type of staff, but doctors’ offices do not.)

If you’re not sure how to do what your doctor wants you to do, ask your doctor: “What does this involve on my end?” How long will this take? What resources will I need to do this? Also, things like asthma or diabetes self-management plans? , ask for written documentation.

“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.”

KFF Health NewsFormerly known as Kaiser Health News or KHN, we are a national newsroom producing in-depth journalism on health issues and one of KFF’s core operating programs.