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Burden Of Getting Medical Care Can Exhaust Older Patients

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the þÄútreatment burdenþÄù 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. (Dreamstime/TNS)

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 runaround 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."

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minn., 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, 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."

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(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF – the independent source for health policy research, polling and journalism.)

New Facility In Paramus Brings Health Care 'outside The Four Walls Of The Hospital'

PARAMUS — A new 150,000-square-foot health center designed to bring specialists and services out of the hospital and into the community is opening on From Road.

Hackensack Meridian Health began planning the health center two years ago as part of its push to expand its outpatient facilities to make health care more accessible and convenient. Some of the center's services, like primary care and dermatology, opened earlier this year. Others, like its infusion center, imaging and oncology will open this summer.

"More and more, health care is being provided outside of the four walls of the hospital," said Robert Garrett, Hackensack Meridian Health CEO. "To me, this is really the future of health care: convenient, easy to access, very high-quality health care that had traditionally been provided in a hospital, provided in an ambulatory care setting."

Apr 23, 2024; Paramus, NJ, United States; Dr. Yiping Xing talks with patient Nathalee Tibvrcio at Hackensack Meridian Health and Wellness Center on Tuesday afternoon.

The health network has "more shovels in the ground" than ever before, Garrett said, with 24 health and wellness centers recently opened or in various stages of construction. Paramus is the network's largest center so far.

Hackensack Meridian broke ground on a medical office facility at NJ Transit's Metropark station in Woodbridge in March. Other facilities recently opened in Clifton, Clark and Eatontown.

The Paramus Health and Wellness Center occupies the first, fifth and much of the fourth floors of 650 From Road, a 340,000-square-foot, five-story corporate office building down the street from Paramus Park mall. Three surgical centers will also open nearby in a smaller building on the same corporate campus.

Apr 23, 2024; Paramus, NJ, United States; A person walks through the lobby of the Hackensack Meridian Health and Wellness Center on Tuesday afternoon.

Transforming much of the building into medical offices is part of a larger reimaging of corporate office space as vacancies soared after the start of the pandemic, said Jose Lozano, Hackensack's chief growth officer. The building will be effectively split into two, he said, with a dedicated patient entrance on one side, close to parking and designed to mirror the look of the main hospital in Hackensack.

The site's location, just off Route 17 and the Garden State Parkway and near Route 4, provides greater accessibility to patients coming from any corner of the county, Lozano said. The facility will also be steps away from a 360-unit residential development planned next to Paramus Park.

Apr 23, 2024; Paramus, NJ, United States; The exterior of the Hackensack Meridian Health and Wellness Center is shown on Tuesday afternoon.

"While the main campus is only really five miles away, we wanted to get something a little bit closer to the community and make it more convenient," he said. "Everyone, if you live in Bergen County, you're touching the Parkway, Route 17 or Route 4. It's a central location."

Paramus, long known as a shopping mecca, is also becoming a medical hub, with the opening of Hackensack's wellness center, Bergen New Bridge Medical Center on East Ridgewood Avenue and The Valley Hospital, which moved from Ridgewood to a newly constructed $868 million facility off of Route 17 last month.

So far, orthopedics, allergy, neuroscience, primary care, rheumatology, cardiology, nephrology, dermatology, and physical and occupational therapy are open at the Paramus site. Opening this spring and summer will be laboratory services, infusion, advanced imaging, and medical oncology, with pediatric specialties opening later this year.

Apr 23, 2024; Paramus, NJ, United States; The interior of the Hackensack Meridian Health and Wellness Center is shown on Tuesday afternoon.

About a third of the doctors and medical personnel working in the building will come from the current system, and the rest will be new hires, Lozano said.

In the past year, Hackensack Meridian has seen a 17% growth in its cancer patient population, Garrett said, highlighting the need for more space for cancer treatment outside of the John Theurer Cancer Center at Hackensack University Medical Center.

More: Here's when Chick-fil-A will open at old Fireplace site on Route 17 in Paramus

A quarter of adults don't have a primary care physician, Garrett said. Even fewer people under the age of 30 regularly visit a doctor. The large primary care practice in Paramus will provide patients with easy access to care, rather than visiting a busy emergency room or an urgent care center.

"It's about providing better access to care, but it's also about affordability," he said. "Providing care in an outpatient setting costs much less than in a hospital."

This article originally appeared on NorthJersey.Com: Paramus NJ: New 150,000-square-foot health center opens

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After Being Denied Health Care, Women Detail 'emotional And Psychological Toll' Of Abortion Bans

Kaitlyn Joshua speaks at a discussion with Michigan Attorney General Dana Nessel in Lansing about threats to reproductive health care on May 7, 2024. (Photo: Anna Liz Nichols)

Two women from southern states talked to the Advance on Tuesday about the trauma of being denied medical care as they were losing their pregnancies following the fall of Roe v. Wade.

Amanda Zurawski of Texas and Kaitlyn Joshua of Louisiana said they both wanted to get pregnant.

Zurawski went through what she described as a grueling year of fertility treatments which ended tragically when the pregnancy she fought so hard for had catastrophic complications at just 18 weeks.

But Texas has a near total abortion ban. Zurawski said she was told by her doctor that her life had to be in danger before they could deliver her daughter before the point of viability, effectively an abortion. She endured two bouts of sepsis before she could get an abortion. The damage from the experience has left her likely unable to carry a future pregnancy.

"I have been put in this position because of what happened to me as a result of the ban that is in place in Texas," Zurawski told the Advance. "… The emotional and the psychological toll that takes, I can't speak to that enough. It's just been, I'm doing much better now, but for a while it was crippling."

Zurwaski's story about nearly dying after her 2022 miscarriage is now the subject of a new TV ad from President Joe Biden's reelection campaign.

Amanda Zurawski speaks at a discussion with Michigan Attorney General Dana Nessel in Lansing about threats to reproductive health care on May 7, 2024. (Photo: Anna Liz Nichols)

"Because [former President] Donald Trump killed Roe v. Wade, Amanda was denied standard medical care to prevent infection, an abortion," the ad says. "… She almost died twice. The infection caused so much damage Amanda may never get pregnant again."

She also has sued the state of Texas.

Zurawski and Joshua traveled to Lansing, Detroit and Grand Rapids on Tuesday on behalf of the Biden campaign. They stopped in Lansing to speak with Michigan Attorney General Dana Nessel, a Democrat, about their concerns for abortion in Michigan should former President Donald Trump get reelected this fall.

Joshua told Nessel about finding out she was pregnant weeks after Louisiana enacted its near total abortion ban. She and her husband were thrilled at the idea of having a second child to join their 4-year-old daughter. But from the start, she was denied reproductive health care, having been told she'd have to wait a month before getting a prenatal appointment at more than two months pregnant.

"I asked on the phone, 'Is this because of what I think?' and they said 'yes.' Because of the abortion ban, prenatal appointments were being scheduled later, when miscarriages are less common, so as to avoid potential legal liability for medical providers," Joshua told Nessel. "At around 11 weeks, just one week before that first prenatal appointment, I started experiencing major blood loss and pain worse than childbirth."

She was having a miscarriage. But instead of being allowed to technically have an abortion in order to safely pass her pregnancy, Joshua said she was sent home.

In a Louisiana Illuminator column published last month, Joshua recalls the staff "told me they were praying for me. I'm a Christian woman who goes to church every Sunday. I needed answers and access to care, not their prayers."

But Joshua said she didn't get the care she needed and instead had to suffer alone.

"It took me weeks to pass my pregnancy at home by myself and I was absolutely terrified. This experience has made me see firsthand how Black women are dying at alarming rates in this country," Joshua said on Tuesday.

Black women are three times more likely to die from pregnancy-related causes than their white counterparts, according to the Centers for Disease Control and Prevention.

"When you look at the access to OBGYNs, when you look at the access to just basic prenatal care, as it stands before Roe v. Wade and after, it is definitely in stark contrast [in terms of] a correlation of the abortion ban playing a role in the rates being worse than they were before," Joshua told the Advance. "As a woman that presents as Black and most importantly, as someone who has experienced adversity as a result of the abortion ban, I kind of get the opportunity to bring that conversation to the table."

Nessel talked about having to get an abortion two decades ago when she was pregnant with triplets in order to save the lives of her other two babies, which she did.

Michigan Attorney General Dana Nessel (left) speaks with Kaitlyn Joshua (middle) and Amanda Zurawski (right) during a discussion in Lansing about threats to reproductive health care on May 7, 2024. (Photo: Anna Liz Nichols)

"I can't imagine, I literally can't imagine being in the situation that you guys have been in, in the states that you're from, now post-Roe," Nessel said. "To have politicians telling me what I could or couldn't do with my body and telling me either that I would have to risk my life just because I happen to be a woman who wanted to reproduce and have children, or potentially telling me that I couldn't have children at all, which doesn't seem very pro life to me in any way, shape or form."

Nessel said that she's terrified at the prospect of a Trump presidency. She argued that any cryptic claims that he's not interested in implementing a federal abortion ban go against what voters know: Trump takes gleeful responsibility for the fall of Roe.

And with states attacking in vitro fertilization (IVF) and questions being raised surrounding surrogacy, the path to parenthood for many people isn't clear under Republican leadership, Zurawski told the Advance.

Earlier this year, she and her husband, Josh, said they were planning to move her frozen embryos out of Texas out of fear that the state could ban IVF.

"It's just really opened my eyes that these laws and the way that they're written really have no limits. And we know that MAGA Republicans will take them as far as possible to control women up and down the United States," Zurawski told the Advance. "To anyone living in any state where they think they're safe, they think they're protected. If Donald Trump is reelected, no one is safe."

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The post After being denied health care, women detail 'emotional and psychological toll' of abortion bans appeared first on Michigan Advance.

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