Susan Gilliam, 67, was walking down her driveway to get mail in January when she slipped and fell on black ice. Pain shot through her left knee and ankle. After calling her husband on her phone, she barely returned home.

And then many people start running away from what they encounter when dealing with America’s disorganized health care system.

Gilliam’s orthopedic surgeon, who had previously managed problems with her left knee, saw her that afternoon but said, “I’m not going to do the ankle.” He referred her to an ankle specialist who ordered a new set of X-rays and MRIs. For convenience, Gilliam requested a scan at a hospital near her home in Sudbury, Mass. But the hospital didn’t have the doctor’s order when she called for an appointment. It was found after many calls. Meanwhile, it took her hours to schedule physical therapist visits to her knees and ankles several times a week.

“The burden of preparing everything I need — it’s huge,” Gilliam told me. “It gives you such a mental and physical exhaustion.”

The true cost of the United States health care system is, in some ways, the cost of extraordinary advances in medicine. But it is evidence of a poor fit between the capabilities of the elderly and the needs of the health care system.

How special medicine complicates care

“The good news is we know a lot and we can do a lot,” said Thomas H. Lee, chief medical officer of Press Genie, a consulting firm that tracks patient care experiences. “The bad news is that the system has become too complex.”

Ishani Ganguly, an associate professor of medicine at Harvard Medical School, says that complication is the expansion of guidelines for various medical conditions, financial incentives for more medical care and rewarding specialists.

“It’s not uncommon for older patients to have three or more heart specialists doing routine appointments and tests,” she says. If a person has multiple medical problems—say, heart disease, diabetes, and glaucoma—the more likely they are to have health care interactions.

Ganguly of A A new study It shows that Medicare patients spend about three weeks a year getting medical tests, visiting doctors, receiving treatment or care, seeking care in an emergency room, or spending time in a hospital or rehabilitation facility. (Data is from 2019, before the Covid-19 pandemic disrupted patterns of care. If any service was received, that was considered a health care contact date.)

That study found that more than 1 in 10 people age 65 and older, including those recovering from or managing serious illnesses, spend at least 50 days a year receiving care.

“Some of this can be very important and useful to people, and some of it is less important,” Ganguly said. “We don’t talk enough about what we’re asking older people to do and whether that’s true.

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minn., has warned for years about the “medical burden” that patients face.

In addition to accessing health care, this burden includes scheduling appointments, finding transportation to medical appointments, finding and taking medications, dealing with insurance companies, paying medical bills, and following recommendations such as dietary changes.

Four years ago – “in a paperIs my patient stressed?” — Montori and several colleagues found that 40 percent of patients with chronic conditions such as asthma, diabetes, and neurological disorders considered their medical burden unsustainable.

When this happens, people stop following treatment recommendations and report poorer quality of life, the researchers said. Particularly vulnerable are the economically disadvantaged and socially marginalized elderly with multiple health conditions and low levels of education.

Problems for older patients include the increased use of digital phone systems and electronic patient portals in medical practices—both of which are difficult for many seniors to navigate—and the time pressure on doctors. “It’s harder and harder for patients to find clinicians who can solve problems and answer questions,” Montori said.

Meanwhile, clinicians rarely question patients’ ability to perform the tasks they are asked to perform. “We often have little understanding of the complexity of our patients’ lives, and even less understanding of how the treatments we provide (to achieve goal-based guidelines) fit into our patients’ daily experiences,” several physicians wrote. 2022 paper Reducing the medical burden.

See what Omaha’s Jean Hartnett, 53, and their 88-year-old mother — who also cares for their ailing father — experienced after suffering a stroke in February 2021.

In the year after the stroke, both of Hartnett’s parents — fiercely independent Nebraska farmers — faced setbacks, and medical crises became common. When a doctor changed mom or dad’s care plan, they had to buy new medications, supplies, and medical equipment, and make a new round of occupational, physical, and speech therapy arrangements.

Neither parent can be left alone when they need medical help.

“It wasn’t unusual for me to be passing an ambulance or a family member on the highway while bringing a parent home from the hospital or a doctor’s visit,” Hartnett explained.

Hartnett moved in with her parents during the last six weeks of her father’s life after doctors decided he was too weak to undergo dialysis. In the year He died in March 2022. Her mother died months later in July.

So, what can seniors and family caregivers do to ease their health care burdens?

To get started, if you think a treatment plan isn’t possible, be honest with your doctor and explain why you feel that way, says Elizabeth Rogers, M.D., assistant professor of internal medicine at the Medical School of Minnesota. Ask which interventions are most important in terms of maintaining your health and which can be avoided.

Doctors can facilitate virtual visits if they can adjust your treatment plan, stop medications that don’t provide significant benefits, and manage technology requirements. (Most seniors can’t.)

Ask if a social worker or patient navigator can help you schedule multiple appointments and tests on the same day to reduce the burden of traveling to and from treatment centers. These professionals can connect you with transportation and other services. (Most medical centers have such staff, but not medical practices.)

If you don’t understand how to do the things your doctor wants you to do, ask them: What does this involve for me? How long does this take? What resources do I need to do this? And ask for written materials, such as asthma or diabetes self-management plans.

“If I choose this treatment option, what does it mean not just for my cancer or heart disease, but for the time I spend in treatment?” asked Harvard’s Ganguly. I ask a medical professional. “If they don’t have an answer, ask if they can come up with their guess.”

KFF health newsFormerly known as Kaiser Health News or KHN, it is a national news division that produces in-depth journalism on health issues and is one of the main operating programs at KHF.