The burden of getting medical care can exhaust older patients

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Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice.

Pain shot through his left knee and leg. After calling her husband on the phone, she returned home with difficulty.

Then it began the rush that many people experience when dealing with America’s inconsistent medical system.

Gilliam’s orthopedic surgeon, who had problems with his back and left knee, saw him that afternoon but told him “I don’t do ankles.”

He was referred to a podiatrist who ordered a new X-ray and MRI machine. To help him, Gilliam asked to get a scale at a hospital near his home in Sudbury, Massachusetts. But there was no doctor’s order at the hospital when he called to go. It only came after a few more calls.

Coordinating the care he needs to recover, including medical treatment, has become a part-time job for Gilliam. (Therapists only work on one part of the body per session, so they need special visits to his knee and leg several times a week.)

“The burden of preparing everything I want — it’s huge,” Gilliam told me. “It makes you very tired mentally and physically.”

The interest that comes from the American Health System is, in some ways, the price of the amazing progress in medicine. But it is also evidence of a mismatch between the capabilities of the elderly and the demands of healthcare.

“The good news is that we know more and can do more for people with different conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a services company that manages the patient experience in healthcare. “The bad news is that the system has reached a critical point.”

This challenge is exacerbated by the increasing number of medical prescriptions, financial incentives that provide more medical care, and medical professionals, said Ishani Ganguli, an assistant professor of medicine at Harvard Medical School.

“It’s not unusual for elderly patients to have three or more cardiologists scheduled at regular intervals,” he said. If someone has multiple medical problems – for example, heart disease, diabetes, and glaucoma – the connection to medical care is multiplied.

Ganguli is the author of a a new lesson showing that Medicare patients spend an average of three weeks a year getting tested, visiting doctors, receiving treatment or medical care, seeking care in emergency rooms, or staying in a hospital or nursing home. (These data are from 2019, before the covid pandemic disrupted care delivery. If any services were received, they count as a day of contact with the hospital.)

The study found that more than 1 in 10 seniors, including those recovering or with serious illnesses, spend most of their lives in care – at least 50 days a year.

“Some of these may be beneficial and important to people, and some may not be,” Ganguli said. “We don’t have enough conversations about what we’re asking adults to do and whether that’s realistic.”

Victor Montori, professor of medicine at Mayo Clinic in Rochester, Minnesota, has for years warned about the “medical burden” that patients face. In addition to receiving medical care, this burden includes scheduling appointments, finding transportation to medical appointments, obtaining and taking medications, communicating with insurance companies, paying medical bills, managing health at home, and following guidelines such as dietary changes.

Four years ago – in a paper called “Is My Patient Fatigue?” – Montori and several colleagues found that 40% of patients with chronic diseases such as asthma, diabetes, and neurological diseases “consider their burden of care to be unstable.”

When this happens, people stop following medical advice and report poor quality of life, the researchers found. Particularly vulnerable are older adults with multiple medical conditions and low education who are economically insecure and isolated.

Elderly patients’ challenges are exacerbated by healthcare systems increasingly using digital phones and electronic patient portals — both of which discourage many seniors from traveling — and the pressures on doctors’ busy schedules. “It’s very difficult for patients to find doctors who can deal with them and answer questions,” Montori said.

Currently, therapists do not ask patients about their ability to perform the task in question. “Too often we don’t know the complexities of our patients’ lives and we don’t really understand how the treatment we provide (to achieve the goals we need) fits into the daily experiences of our patients,” several doctors wrote in 2022 paper on the reduction of drug load.

Consider what Jean Hartnett, 53, from Omaha, Nebraska, and her 8 siblings experienced when their 88-year-old mother suffered a stroke in February 2021 while shopping at the store. Walmart.

At the time, the elderly woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as bathing and going to the toilet.

In the year after the stroke, both of Hartnett’s parents – self-employed farmers who lived in Hubbard, Nebraska – faced difficulties, and medical problems became common. When the doctor changed the plan of care for his mother or father, he had to buy new medicines, other essentials, and medical equipment, and he planned new ways to help him with work, exercise, and speech.

No parent would be left alone if their partner needed medical attention.

“It wasn’t uncommon for me to bring one parent home from the hospital or to the doctor and pass an ambulance or a family member on the highway and bring another in,” explained Hartnett. “A lot of cooperation has to happen.”

Hartnett moved in with his parents during the last six weeks of his father’s life, after doctors decided he was too weak to undergo dialysis. He died in March 2022. His mother died a few months later in July.

So, what can older adults and family caregivers do to reduce the burden of health care?

To get started, talk honestly with your doctor if you think treatment isn’t possible 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 trade-offs: what you can gain and what you can lose by not getting tested or receiving treatment,” he said. Ask which methods are most important to your health, and which may be helpful.

Doctors can change your medication regimen, stop taking medications that aren’t providing the most benefit, and schedule visits if you can meet the technical requirements. (Most adults cannot.)

Ask if a social worker or sick boater can help you schedule multiple appointments and tests on the same day to reduce the burden of getting to and from the hospital. These professionals can also help you connect with community resources, such as transportation, that may be helpful. (Many hospitals have such staff, but doctors do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: How will this affect my part? How long will this take? What do I need to do to do this? And ask for documents, such as self-management plans for asthma or diabetes, that can help you understand what to expect.

“I ask the doctor, ‘If I choose this treatment, what does that mean not only for my cancer or heart disease, but also for the time I will spend in treatment?'” said Ganguli from Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

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