By Paula Span
The New York Times
Deana Hendrickson sometimes feels daunted by the demands of the medical system. “Every body part has a doctor,” she lamented. “I hate it.”
Hendrickson reeled off a long list of her health care providers: a primary care doctor; a cardiologist, because she has mild heart disease and a concerning family history; a lung surgeon and a pulmonologist who oversee an annual scan because of her family history of lung cancer.
Plus an ophthalmologist, a gynecologist, a urologist, a podiatrist, a gastroenterologist — “and I just came back from the dentist.”
She estimates that with scans, imaging and tests, she spends two dozen days a year engaged with some sort of provider. Most of them, she added, practice in Santa Monica, where she used to live, now an hour’s drive from her home.
At 65, providing five-day-a-week care (with her husband) for three grandsons under 5, she’s reasonably healthy and active. But her regimen “makes me feel like a sick person,” Hendrickson said.
“I’m like an older car that always needs more maintenance. There’s so many other things I’d rather be doing.”
Researchers call such encounters “health care contact days,” and they are starting to quantify their toll on older adults.
“More people are thinking about time and health care,” said Dr. Ishani Ganguli, a physician and researcher at Harvard Medical School. “It identifies a key way we ask a lot of patients.”
Doctors, she added, “underestimate the burdens and negative trade-offs of health care.”
Analyzing data from traditional Medicare for 2019, her team reported that beneficiaries older than 65 averaged about 17 contact days that year for ambulatory care, which included doctors’ visits, tests and imaging, therapy and procedures — but not time spent in hospitals or nursing homes. (And not dentistry, since Medicare rarely covers it.)
But certain groups of seniors spent considerably more time with the medical system. Among those with 10 or more chronic conditions — an eye-opening 14% of the total — contact days for ambulatory care rose to 30 a year. Eleven percent of patients clocked 50 such days or more.
“My clients are going to doctors two or three times a week,” said Kathleen Carmody, who owns Senior Matters Home Care and Consulting in Columbus, Ohio. “Physical therapy. Follow-up appointments. Blood draws.”
For both her clients and the caregivers who accompany them, she said, “it can be exhausting.”
The understanding that medical care can become a wearying treadmill for older patients has led researchers to look more closely at the consequences of so-called burdens of treatment.
Patients can experience treatment cascades, for instance — a series of if-this-then-that results in which “the downstream care is even more burdensome,” Ganguli said.
She recently wrote in The New England Journal of Medicine about an example in her own family, after her father agreed to prostate cancer screening at 79.
“My heart sank,” she said in an interview, noting that “there’s a reason that test is not recommended” at advanced ages. “More often than not, it leads to diagnostic testing and treatment whose harms outweigh the good.”
Indeed, her father later began radiation for prostate cancer, scheduled five days a week for eight weeks. Generally, prostate cancer is slow-growing and may never trouble older patients if it goes undetected, but testing for it can contribute to a cascade of contact days.
Then “there are the opportunity costs,” Ganguli said. “You’d rather be spending time with friends or going for a walk.”
Treatment burdens can also lead people to abandon remedies that prove too demanding, ultimately harming their health.
“The work of being a patient is a massively long list, and it continues to expand,” said Dr. Victor Montori, an endocrinologist and researcher at Mayo Clinic.
He ticked off tasks like preparing for, confirming, attending or rescheduling appointments; taking and refilling prescriptions; monitoring insurance paperwork; and perusing nutrition labels at the supermarket.
“You don’t have infinite time, energy and attention,” he said, and as the challenges add up, “some treatments that are helpful you will discontinue or delay, because it is simply overwhelming.”
But slowing the health care treadmill — an approach Montori has called “minimally disruptive medicine” — is possible.
“If doctors and clinics and health care systems paid attention to ways to lessen the burden, we’d all be better off,” Ganguli said. “And some are fairly simple.”
One strategy: reducing what experts call “low-value care.” Her research has confirmed what critics have pointed out for years: Older people receive too many services of dubious worth, including prostate cancer screening in men older than 70 and unneeded tests before surgery.
Decreasing them would save patients time and energy, prevent treatment cascades and reduce spending, including out-of-pocket charges.
“I’d encourage patients to bring it up,” Ganguli said. If I follow this treatment plan, how many days would I have to go to a facility? If this medication requires regular lab testing, is there a less taxing alternative?
And why can’t providers, particularly in larger health care systems, coordinate and consolidate care? Office visits, lab tests and vaccinations could be scheduled on the same day.
“It’s thinking about the person holistically: Let’s be efficient and get this done while they’re here,” Ganguli explained.
David Gans, 71, a musician and author in Oakland, has spent months coping with “mild but intractable” urinary tract infections, as well as surgery to repair the fistula (an abnormal connection between body parts) that apparently caused them.
“I’ve probably had 20 or 30 urine tests in the last two years,” he said.
But he’s a member of Kaiser Permanente, the highly integrated health organization that pays its doctors salaries, reducing the incentives to add low-value services. The urologist, the surgeon and the infectious disease specialist Gans saw were all Kaiser doctors who coordinated visits.
“I didn’t have to call another practice and do intake,” he said.
He had access to a test lab whenever he experienced symptoms, without appointments. “I walk in, show them my card, they hand me the jug,” he said.
While there, he can pick up medications at the Kaiser pharmacy or receive them by mail within two days. And he can take advantage of walk-in clinics for flu shots and COVID vaccines.
“My friends keep talking about what a pain health care is, but I’m a happy customer,” Gans said.
More care could shift to patients’ homes, too.
More than 17% of older Medicare beneficiaries report difficulty traveling to doctor’s offices, and more than half of those beneficiaries are accompanied by someone else — doubling the burden. Home care, hospital-at-home programs and telehealth eliminate some of the inconvenience.
Telehealth spiked during the early COVID years: In 2020, almost half of traditional Medicare beneficiaries had at least one telehealth visit. By late last year, less than 13% did — still a higher proportion than before the pandemic. But without congressional action, some of Medicare’s policies expanding telehealth will expire Dec. 31.
Health care systems themselves have a major role to play in reducing treatment burdens. They could put specialists in the same building, for example, and adopt payment models that reduce incentives to schedule additional visits and tests.
In the meantime, Deana Hendrickson is looking for ways to preserve her health while cutting back on burdensome care. She tries to schedule two appointments on the same day and sometimes succeeds. She sees her cardiologist twice a year instead of four times.
The other day, at the pharmacy, she bought a home kit for testing her hemoglobin A1C level. Hendrickson had been going to a lab every three months for that test. (A1C testing is recommended every year or two for prediabetics.)
Now, she said, “that’s one thing I can do on my own.”
