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.”

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.

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.

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.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit http://kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.

TREASURE ISLAND, Fla. — Andrew McClave Jr. loved to lift weights. The 6-foot-4-inch bartender resembled a bodybuilder and once posed for a photo flexing his muscles with former pro wrestler Hulk Hogan.

“He was extremely dedicated to it,” said his father, Andrew McClave Sr., “to the point where it was almost like he missed his medication if he didn’t go.”

But the hobby took its toll. According to a police report, a friend told the Treasure Island Police Department that McClave, 36, suffered from back problems and took unprescribed pills to reduce the pain.

In late 2022, the friend discovered McClave in bed. He had no pulse. A medical examiner determined he had a fatal amount of fentanyl, cocaine, and xylazine, a veterinary tranquilizer used to sedate horses, in his system, an autopsy report said. Heart disease was listed as a contributing factor.

McClave is among more than 260 people across Florida who died in one year from accidental overdoses involving xylazine, according to a Tampa Bay Times analysis of medical examiner data from 2022, the first year state officials began tracking the substance. Numbers for 2023 haven’t been published.

The death toll reflects xylazine’s spread into the nation’s illicit drug supply. Federal regulators approved the tranquilizer for animals in the early 1970s and it’s used to sedate horses for procedures like oral exams and colic treatment, said Todd Holbrook, an equine medicine specialist at the University of Florida. Reports of people using xylazine emerged in Philadelphia, then the drug spread south and west.

What’s not clear is exactly what role the sedative plays in overdose deaths, because the Florida data shows no one fatally overdosed on xylazine alone. The painkiller fentanyl was partly to blame in all but two cases in which the veterinary drug was included as a cause of death, according to the Times analysis. Cocaine or alcohol played roles in the cases in which fentanyl was not involved.

Fentanyl is generally the “800-pound gorilla,” according to Lewis Nelson, chair of the emergency medicine department at Rutgers New Jersey Medical School, and xylazine may increase the risk of overdose, though not substantially.

But xylazine appears to complicate the response to opioid overdoses when they do happen and makes it harder to save people. Xylazine can slow breathing to dangerous levels, according to federal health officials, and it doesn’t respond to the overdose reversal drug naloxone, often known by the brand name Narcan. Part of the problem is that many people may not know they are taking the horse tranquilizer when they use other drugs, so they aren’t aware of the additional risks.

Lawmakers in Tallahassee made xylazine a Schedule 1 drug like heroin or ecstasy in 2016, and several other states including Pennsylvania, Ohio, and West Virginia have taken action to classify it as a scheduled substance, too. But it’s not prohibited at the federal level. Legislation pending in Congress would criminalize illicit xylazine use nationwide.

The White House in April designated the combination of fentanyl and xylazine, often called “tranq dope,” as an emerging drug threat. A study of 20 states and Washington, D.C., found that overdose deaths attributed to both illicit fentanyl and xylazine exploded from January 2019 to June 2022, jumping from 12 a month to 188.

“We really need to continue to be proactive,” said Amanda Bonham-Lovett, program director of a syringe exchange in St. Petersburg, “and not wait until this is a bigger issue.”

‘A Good Business Model’

There are few definitive answers about why xylazine use has spread — and its impact on people who consume it.

The U.S. Drug Enforcement Administration in September said the tranquilizer is entering the country in several ways, including from China and in fentanyl brought across the southwestern border. The Florida attorney general’s office is prosecuting an Orange County drug trafficking case that involves xylazine from a New Jersey supplier.

Bonham-Lovett, who runs IDEA Exchange Pinellas, the county’s anonymous needle exchange, said some local residents who use drugs are not seeking out xylazine — and don’t know they’re consuming it.

One theory is that dealers are mixing xylazine into fentanyl because it’s cheap and also affects the brain, Nelson said.

“It’s conceivable that if you add a psychoactive agent to the fentanyl, you can put less fentanyl in and still get the same kick,” he said. “It’s a good business model.”

In Florida, men accounted for three-quarters of fatal overdoses involving xylazine, according to the Times analysis. Almost 80% of those who died were white. The median age was 42.

Counties on Florida’s eastern coast saw the highest death tolls. Duval County topped the list with 46 overdoses. Tampa Bay recorded 19 fatalities.

Cocaine was also a cause in more than 80 cases, including McClave’s, the Times found. The DEA in 2018 warned of cocaine laced with fentanyl in Florida.

In McClave’s case, Treasure Island police found what appeared to be marijuana and a small plastic bag with white residue in his room, according to a police report. His family still questions how he took the powerful drugs and is grappling with his death.

He was an avid fisherman, catching snook and grouper in the Gulf of Mexico, said his sister, Ashley McClave. He dreamed of being a charter boat captain.

“I feel like I’ve lost everything,” his sister said. “My son won’t be able to learn how to fish from his uncle.”

Mysterious Wounds

Another vexing challenge for health officials is the link between chronic xylazine use and open wounds.

The wounds are showing up across Tampa Bay, needle exchange leaders said. The telltale sign is blackened, crusty tissue, Bonham-Lovett said. Though the injuries may start small — the size of a dime — they can grow and “take over someone’s whole limb,” she said.

Even those who snort fentanyl, instead of injecting it, can develop them. The phenomenon is unexplained, Nelson said, and is not seen in animals.

IDEA Exchange Pinellas has recorded at least 10 cases since opening last February, Bonham-Lovett said, and has a successful treatment plan. Staffers wash the wounds with soap and water, then dress them.

One person required hospitalization partly due to xylazine’s effects, Bonham-Lovett said. A 31-year-old St. Petersburg woman, who asked not to be named due to concerns over her safety and the stigma of drug use, said she was admitted to St. Anthony’s Hospital in 2023. The woman, who said she uses fentanyl daily, had a years-long staph infection resistant to some antibiotics, and a wound recently spread across half her thigh.

The woman hadn’t heard of xylazine until IDEA Exchange Pinellas told her about the drug. She’s thankful she found out in time to get care.

“I probably would have lost my leg,” she said.

This article was produced in partnership with the Tampa Bay Times.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.