Finding Medical Care Can Be Exhausting for Seniors

By Judith Graham, KFF Health News

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 her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the run-around that so many people face when they interact with America’s uncoordinated health care system.

Gilliam’s orthopedic surgeon, who managed previous difficulties 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’s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)

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

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

“The good news is we know so much more and can do so much more for people with various 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 the system has gotten overwhelmingly complex.”

Multiple Doctors Visits

That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems — say, heart disease, diabetes, and glaucoma — interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)

That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year.

“Some of this may be very beneficial and valuable for people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the “treatment burden” that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.

Overwhelmed Patients

Four years ago — in a paper titled “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’ difficulties 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 pressures afflicting physicians.

“It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do.

“We often have little sense of the complexity of our patients’ lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021 while shopping at Walmart. At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett explained. “An incredible amount of coordination needed to happen.”

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

Easing the Healthcare Burden

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

To start, be candid with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School. 

“Be sure to discuss your health priorities and trade-offs: what you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important in terms of keeping you healthy, and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits, and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or a patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of going to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that might be of help. (Most medical centers have staff of this kind, but physician practices do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’” said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

Avoiding Medical Care During Pandemic Could Mean Life or Death

By John Glionna, Kaiser Health News

These days, Los Angeles acting teacher Deryn Warren balances her pain with her fear. She’s a bladder cancer patient who broke her wrist in November. She still needs physical therapy for her wrist, and she’s months late for a cancer follow-up.

But Warren won’t go near a hospital, even though she says her wrist hurts every day.

“If I go back to the hospital, I’ll get COVID. Hospitals are full of COVID people,” says Warren, a former film director.

“Doctors say, ‘Come back for therapy,’ and my answer is, ‘No, thank you.’”

Many, many patients like Warren are shunning hospitals and clinics. The coronavirus has so diminished trust in the U.S. medical system that even people with obstructed bowels, chest pain and stroke symptoms are ignoring danger signs and staying out of the emergency room, with potentially mortal consequences.

A study by the Centers for Disease Control and Prevention found that emergency room visits nationwide fell 42% in April, from a mean of 2.1 million a week to 1.2 million, compared with the same period in 2019.

A Harris poll on behalf of the American Heart Association found roughly 1 in 4 adults experiencing a heart attack or stroke would rather stay at home than risk getting infected with the coronavirus at the hospital. These concerns are higher in Black (33%) and Hispanic (41%) populations, said Dr. Mitchell Elkind, president of the American Heart Association and a professor of neurology and epidemiology at Columbia University.

Perhaps even more worrisome is the drastic falloff of routine screening, especially in regions hit hard by the virus. Models created by the medical research company IQVIA predict delayed diagnoses of an estimated 36,000 breast cancers and 19,000 colorectal cancers due to COVID-19’s scrambling of medical care.

At Hoag Memorial Hospital Presbyterian in Newport Beach, California, mammograms have dropped as much as 90% during the pandemic. “When you see only 10% of possible patients, you’re not going to spot that woman with early-stage breast cancer who needs a follow-up biopsy,” said Dr. Burton Eisenberg, executive medical director of the Hoag Family Cancer Institute.

Before the epidemic, Eisenberg saw five melanoma patients a week. He hasn’t seen any in the past month. “There’s going to be a lag time before we see the results of all this missed care,” he said. “In two or three years, we’re going to see a spike in breast cancer in Orange County, and we’ll know why,” he said.

Dr. Farzad Mostashari, former national coordinator for health information technology at the U.S. Department of Health and Human Services, agreed. “There will be consequences for deferring chronic disease management,” he said.

“Patients with untreated high blood pressure, heart and lung and kidney diseases are all likely to experience a slow deterioration. Missed mammograms, people keeping up with blood pressure control — there’s no question this will all cause problems.”

In addition to fear? Changes in the health care system have prevented some from getting needed care.

Many medical offices have remained closed during the pandemic, delaying timely patient testing and treatment. Other sick patients lost their company-sponsored health insurance during virus-related job layoffs and are reluctant to seek care, according to a study by the Urban Institute.

A study by the American Cancer Society’s Cancer Action Network found that 79% of cancer patients in treatment had experienced delays in care, including 17% who saw delays in chemotherapy or radiation therapy.

“Many screening facilities were shuttered, while people were afraid to go to the ones that were open for fear of contracting COVID,” said Dr. William Cance, chief medical and scientific officer for the American Cancer Society.

Falling Through the Cracks

And then there are patients who have fallen through the cracks because of the medical system’s fixation on COVID-19.

Dimitri Timm, a 43-year-old loan officer from Watsonville, California, began feeling stomach pain in mid-June. He called his doctor, who suspected the coronavirus and directed Timm to an urgent care facility that handled suspected COVID patients.

But that office was closed for the day. When he was finally examined the following afternoon, Timm learned his appendix had burst. “If my burst appendix had become septic, I could have died,” he said.

The degree to which non-COVID patients are falling through the cracks may vary by region. Doctors in Northern California, whose hospitals haven’t yet seen an overwhelming surge of COVID-19 cases, have continued to see other patients, said Dr. Robert Harrington, chairman of the Stanford University Department of Medicine and outgoing president of the American Heart Association. Non-COVID issues were more likely to have been missed in, say, New York during the April wave, he said.

The American College of Cardiology and American Heart Association have launched campaigns to get patients to seek urgent care and continue routine appointments.

The impact of delayed care might be felt this winter if a renewed crush of COVID-19 cases collides with flu season, overwhelming the system in what CDC Director Robert Redfield has predicted will be “one of the most difficult times that we’ve experienced in American public health.”

The health care system’s ability to handle it all is “going to be tested,” said Anthony Wright, executive director of Health Access California, an advocacy group.

‘Sabbatical from Bad Habits’

But some patients who stay at home may actually be avoiding doctors because they don’t need care. Yale University cardiologist and researcher Dr. Harlan Krumholz believes the pandemic could be reducing stress for some heart patients, thus reducing heart attacks and strokes.

“After the nation shut down, the air was cleaner, the roads were less trafficked. And so, paradoxically, people say they were experiencing less stress in the pandemic, not more,” said Krumholz, who wrote an April op-ed in The New York Times headlined “Where Have All the Heart Attacks Gone?” “While sheltering in place, they were eating healthier, changing lifestyles and bad behaviors,” he said.

At least some medical experts agree.

“The shutdown may have provided a sabbatical for our bad habits,” said Dr. Jeremy Faust, a physician in the division of health policy and public health at Boston’s Brigham and Women’s Hospital. “We’re making so many changes to our lives, and that includes heart patients. If you go to a restaurant three times a week or more, do you realize how much butter you’re eating?”

While some patients may be benefiting from a COVID-19 change of regimen, many people have urgent and undeniable medical needs. And some are pressing through their fear of the virus to seek care, after balancing the risks and benefits.

In March, when the virus took hold, Kate Stuhr-Mack was undergoing a clinical trial at Hoag for her stage 4 ovarian cancer, which had recurred after a nine-month relapse.

Members of her online support group considered staying away from the facility, afraid of contracting the virus. But Stuhr-Mack, 69, a child psychologist, had no choice: To stay in the trial, she had to keep her regular outpatient chemotherapy appointments.

“We all make choices, so you have to be philosophical,” she said. “And I thought it was far more risky not to get my cancer treatment than face the off-chance I’d contract COVID on some elevator.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Nearly Half of Americans Delayed Medical Care Due to Pandemic

By Elizabeth Lawrence, Kaiser Health News

As the coronavirus threat ramped up in March, hospitals, health systems and private practices dramatically reduced inpatient, nonemergency services to prepare for an influx of COVID-19 patients. A poll released Wednesday reveals that the emptiness of medical care centers may also reflect the choices patients made to delay care.

The Kaiser Family Foundation (KFF) poll found that 48% of Americans said they or a family member has skipped or delayed medical care because of the pandemic, and 11% of them said the person’s condition worsened as a result of the delayed care.

Medical groups have noted a sharp drop-off in emergency patients across the country. Some, including the American College of Emergency Physicians, American College of Cardiology and American Heart Association, have publicly urged people concerned about their health to seek care.

Dr. William Jaquis, president of the American College of Emergency Physicians, said the anecdotes he’s heard of people delaying care have been troubling, with patients suffering heart attacks or strokes at home. He urged people not to skip going to the emergency room, and pointed out the many safety precautions hospitals are taking to curb the spread of the coronavirus.

“Don’t sit at home and have a bad outcome,” Jaquis said. “We’re certainly there and in many ways very safe, and, especially with low volumes in some places, we’re able to see people quickly. Come on in, please.”

According to the poll, nearly 7 in 10 of those who had skipped seeing a medical professional expect to get care in the next three months.

Despite a significant number of adults saying they delayed care, 86% of adults said their physical health has “stayed about the same” since the onset of the outbreak in the U.S.

Nearly 40% of Americans, however, said stress related to the coronavirus has negatively affected their mental health. Women were more likely than men to say the coronavirus has had a negative impact on their mental health, and those living in urban and suburban areas were more likely to say this than those living in rural areas. Nearly half of those living in households that have experienced income or job loss said the pandemic had a negative effect on their mental health.

The findings are similar to those from a PNN survey of over 2,200 people with chronic pain or chronic illness conducted in April. Forty-two percent in that poll said they were worried about their mental health due to the pandemic. Over 70 percent say they had cancelled or postponed a medical appointment. (See “Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown”).

The KFF poll further reports on some of the economic consequences of the pandemic. It found that about 3 in 10 adults have had trouble paying household expenses, with 13% expressing difficulty paying for food and 11% paying medical bills. Nearly 1 in 4 adults said they or a family member in the next year will likely turn to Medicaid, the federal-state health insurance program for low-income residents.

Medicaid continues to show strong support among Americans. About three-quarters said they would oppose efforts by their states to cut the program as part of cost reductions.

The poll was conducted May 13-18 among 1,189 adults. The margin of sampling error is +/-3 percentage points for the full sample.

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.