Managing Major Chronic Diseases – by Alexis Dupree
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Our author, Alexis Dupree, is herself in her 70s, and writing with more than three decades of experience of surviving multiple chronic diseases (in her case, Multiple Sclerosis, and then a dozen comorbidities that came with such).
She is not a doctor or a scientist, but for more than 30 years she’s been actively working to accumulate knowledge not just on her own conditions, but on the whole medical system, and what it means to be a “forever patient” without giving up hope.
She talks lived-experience “life management” strategies for living with chronic disease, and she talks—again from lived experience—about navigating the complexities of medical care; not on a legalistic “State regulations say…” level, because that kind of thing changes by the minute, but on a human level.
Perhaps most practically: how to advocate strongly for yourself while still treating medical professionals with the respect and frankly compassion that they deserve while doing their best in turn.
But also: how to change your attitude to that of a survivor, and yet also redefine your dreams. How to make a new game plan of life—while working to make life easier for yourself. How to deal, psychologically, with the likelihood that not only will you probably not get better, but also, you will probably get worse, while still never, ever, giving up.
After all, many things are easily treatable today that mere decades ago were death sentences, and science is progressing all the time. We just have to stay alive, and in as good a condition as we reasonably can, to benefit from those advances!
Bottom line: if you have a chronic disease, or if a loved one does, then this is an immensely valuable book to read.
Click here to check out Managing Major Chronic Diseases, and make life easier!
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Traveling To Die: The Latest Form of Medical Tourism
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In the 18 months after Francine Milano was diagnosed with a recurrence of the ovarian cancer she thought she’d beaten 20 years ago, she traveled twice from her home in Pennsylvania to Vermont. She went not to ski, hike, or leaf-peep, but to arrange to die.
“I really wanted to take control over how I left this world,” said the 61-year-old who lives in Lancaster. “I decided that this was an option for me.”
Dying with medical assistance wasn’t an option when Milano learned in early 2023 that her disease was incurable. At that point, she would have had to travel to Switzerland — or live in the District of Columbia or one of the 10 states where medical aid in dying was legal.
But Vermont lifted its residency requirement in May 2023, followed by Oregon two months later. (Montana effectively allows aid in dying through a 2009 court decision, but that ruling doesn’t spell out rules around residency. And though New York and California recently considered legislation that would allow out-of-staters to secure aid in dying, neither provision passed.)
Despite the limited options and the challenges — such as finding doctors in a new state, figuring out where to die, and traveling when too sick to walk to the next room, let alone climb into a car — dozens have made the trek to the two states that have opened their doors to terminally ill nonresidents seeking aid in dying.
At least 26 people have traveled to Vermont to die, representing nearly 25% of the reported assisted deaths in the state from May 2023 through this June, according to the Vermont Department of Health. In Oregon, 23 out-of-state residents died using medical assistance in 2023, just over 6% of the state total, according to the Oregon Health Authority.
Oncologist Charles Blanke, whose clinic in Portland is devoted to end-of-life care, said he thinks that Oregon’s total is likely an undercount and he expects the numbers to grow. Over the past year, he said, he’s seen two to four out-of-state patients a week — about one-quarter of his practice — and fielded calls from across the U.S., including New York, the Carolinas, Florida, and “tons from Texas.” But just because patients are willing to travel doesn’t mean it’s easy or that they get their desired outcome.
“The law is pretty strict about what has to be done,” Blanke said.
As in other states that allow what some call physician-assisted death or assisted suicide, Oregon and Vermont require patients to be assessed by two doctors. Patients must have less than six months to live, be mentally and cognitively sound, and be physically able to ingest the drugs to end their lives. Charts and records must be reviewed in the state; neglecting to do so constitutes practicing medicine out of state, which violates medical licensing requirements. For the same reason, the patients must be in the state for the initial exam, when they request the drugs, and when they ingest them.
State legislatures impose those restrictions as safeguards — to balance the rights of patients seeking aid in dying with a legislative imperative not to pass laws that are harmful to anyone, said Peg Sandeen, CEO of the group Death With Dignity. Like many aid-in-dying advocates, however, she said such rules create undue burdens for people who are already suffering.
Diana Barnard, a Vermont palliative care physician, said some patients cannot even come for their appointments. “They end up being sick or not feeling like traveling, so there’s rescheduling involved,” she said. “It’s asking people to use a significant part of their energy to come here when they really deserve to have the option closer to home.”
Those opposed to aid in dying include religious groups that say taking a life is immoral, and medical practitioners who argue their job is to make people more comfortable at the end of life, not to end the life itself.
Anthropologist Anita Hannig, who interviewed dozens of terminally ill patients while researching her 2022 book, “The Day I Die: The Untold Story of Assisted Dying in America,” said she doesn’t expect federal legislation to settle the issue anytime soon. As the Supreme Court did with abortion in 2022, it ruled assisted dying to be a states’ rights issue in 1997.
During the 2023-24 legislative sessions, 19 states (including Milano’s home state of Pennsylvania) considered aid-in-dying legislation, according to the advocacy group Compassion & Choices. Delaware was the sole state to pass it, but the governor has yet to act on it.
Sandeen said that many states initially pass restrictive laws — requiring 21-day wait times and psychiatric evaluations, for instance — only to eventually repeal provisions that prove unduly onerous. That makes her optimistic that more states will eventually follow Vermont and Oregon, she said.
Milano would have preferred to travel to neighboring New Jersey, where aid in dying has been legal since 2019, but its residency requirement made that a nonstarter. And though Oregon has more providers than the largely rural state of Vermont, Milano opted for the nine-hour car ride to Burlington because it was less physically and financially draining than a cross-country trip.
The logistics were key because Milano knew she’d have to return. When she traveled to Vermont in May 2023 with her husband and her brother, she wasn’t near death. She figured that the next time she was in Vermont, it would be to request the medication. Then she’d have to wait 15 days to receive it.
The waiting period is standard to ensure that a person has what Barnard calls “thoughtful time to contemplate the decision,” although she said most have done that long before. Some states have shortened the period or, like Oregon, have a waiver option.
That waiting period can be hard on patients, on top of being away from their health care team, home, and family. Blanke said he has seen as many as 25 relatives attend the death of an Oregon resident, but out-of-staters usually bring only one person. And while finding a place to die can be a problem for Oregonians who are in care homes or hospitals that prohibit aid in dying, it’s especially challenging for nonresidents.
When Oregon lifted its residency requirement, Blanke advertised on Craigslist and used the results to compile a list of short-term accommodations, including Airbnbs, willing to allow patients to die there. Nonprofits in states with aid-in-dying laws also maintain such lists, Sandeen said.
Milano hasn’t gotten to the point where she needs to find a place to take the meds and end her life. In fact, because she had a relatively healthy year after her first trip to Vermont, she let her six-month approval period lapse.
In June, though, she headed back to open another six-month window. This time, she went with a girlfriend who has a camper van. They drove six hours to cross the state border, stopping at a playground and gift shop before sitting in a parking lot where Milano had a Zoom appointment with her doctors rather than driving three more hours to Burlington to meet in person.
“I don’t know if they do GPS tracking or IP address kind of stuff, but I would have been afraid not to be honest,” she said.
That’s not all that scares her. She worries she’ll be too sick to return to Vermont when she is ready to die. And, even if she can get there, she wonders whether she’ll have the courage to take the medication. About one-third of people approved for assisted death don’t follow through, Blanke said. For them, it’s often enough to know they have the meds — the control — to end their lives when they want.
Milano said she is grateful she has that power now while she’s still healthy enough to travel and enjoy life. “I just wish more people had the option,” she said.
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.
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Hoisin Sauce vs Teriyaki Sauce – Which is Healthier?
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Our Verdict
When comparing hoisin sauce to teriyaki sauce, we picked the teriyaki sauce.
Why?
Neither are great! But spoonful for spoonful, the hoisin sauce has about 5x as much sugar.
Of course, exact amounts will vary by brand, but the hoisin will invariably be much more sugary than the teriyaki.
On the flipside, the teriyaki sauce may sometimes have slightly more salt, but they are usually in approximately the same ballpark of saltiness, so this is not a big deciding factor.
As a general rule of thumb, the first few ingredients will look like this for each, respectively:
Hoisin:
- Sugar
- Water
- Soybeans
Teriyaki:
- Soy sauce (water, soybeans, salt)
- Rice wine
- Sugar
In essence: hoisin is a soy-flavored syrup, while teriyaki is a sweetened soy sauce
Wondering about that rice wine? The alcohol content is negligible, sufficiently so that teriyaki sauce is not considered alcoholic. For health purposes, it is well under the 0.05% required to be considered alcohol-free.
For religious purposes, we are not your rabbi or imam, but to our best understanding, teriyaki sauce is generally considered kosher* (the rice wine being made from rice) and halal (the rice wine being de-alcoholized by the processing, making the sauce non-intoxicating).
Want to try some?
You can compare these examples side-by-side yourself:
Enjoy!
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The Powerful Constraints on Medical Care in Catholic Hospitals Across America
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Nurse midwife Beverly Maldonado recalls a pregnant woman arriving at Ascension Saint Agnes Hospital in Maryland after her water broke. It was weeks before the baby would have any chance of survival, and the patient’s wishes were clear, she recalled: “Why am I staying pregnant then? What’s the point?” the patient pleaded.
But the doctors couldn’t intervene, she said. The fetus still had a heartbeat and it was a Catholic hospital, subject to the “Ethical and Religious Directives for Catholic Health Care Services” that prohibit or limit procedures like abortion that the church deems “immoral” or “intrinsically evil,” according to its interpretation of the Bible.
“I remember asking the doctors. And they were like, ‘Well, the baby still has a heartbeat. We can’t do anything,’” said Maldonado, now working as a nurse midwife in California, who asked them: “What do you mean we can’t do anything? This baby’s not going to survive.”
The woman was hospitalized for days before going into labor, Maldonado said, and the baby died.
Ascension declined to comment for this article.
The Catholic Church’s directives are often at odds with accepted medical standards, especially in areas of reproductive health, according to physicians and other medical practitioners.
The American College of Obstetricians and Gynecologists’ clinical guidelines for managing pre-labor rupture of membranes, in which a patient’s water breaks before labor begins, state that women should be offered options, including ending the pregnancy.
Maldonado felt her patient made her wishes clear.
“Under the ideal medical practice, that patient should be helped to obtain an appropriate method of terminating the pregnancy,” said Christian Pettker, a professor of obstetrics, gynecology, and reproductive sciences at the Yale School of Medicine, who helped author the guidelines.
He said, “It would be perfectly medically appropriate to do a termination of pregnancy before the cessation of cardiac activity, to avoid the health risks to the pregnant person.”
“Patients are being turned away from necessary care,” said Jennifer Chin, an OB-GYN at UW Medicine in Seattle, because of the “emphasis on these ethical and religious directives.”
They can be a powerful constraint on the care that patients receive at Catholic hospitals, whether emergency treatment when a woman’s health is at risk, or access to birth control and abortions.
More and more women are running into barriers to obtaining care as Catholic health systems have aggressively acquired secular hospitals in much of the country. Four of the 10 largest U.S. hospital chains by number of beds are Catholic, according to federal data from the Agency for Healthcare Research and Quality. There are just over 600 Catholic general hospitals nationally and roughly 100 more managed by Catholic chains that place some religious limits on care, a KFF Health News investigation reveals.
Maldonado’s experience in Maryland came just months before the Supreme Court’s ruling in 2022 to overturn Roe v. Wade, a decision that compounded the impact of Catholic health care restrictions. In its wake, roughly a third of states have banned or severely limited access to abortion, creating a one-two punch for women seeking to prevent pregnancy or to end one. Ironically, some states where Catholic hospitals dominate — such as Washington, Oregon, and Colorado — are now considered medical havens for women in nearby states that have banned abortion.
KFF Health News analyzed state-level birth data to discover that more than half a million babies are born each year in the U.S. in Catholic-run hospitals, including those owned by CommonSpirit Health, Ascension, Trinity Health, and Providence St. Joseph Health. That’s 16% of all hospital births each year, with rates in 10 states exceeding 30%. In Washington, half of all babies are born at such hospitals, the highest share in the country.
“We had many instances where people would have to get in their car to drive to us while they were bleeding, or patients who had had their water bags broken for up to five days or even up to a week,” said Chin, who has treated patients turned away by Catholic hospitals.
Physicians who turned away patients like that “were going against evidence-based care and going against what they had been taught in medical school and residency,” she said, “but felt that they had to provide a certain type of care — or lack of care — just because of the strength of the ethical and religious directives.”
Following religious mandates can be dangerous, Chin and other clinicians said.
When a patient has chosen to end a pregnancy after the amniotic sac — or water — has broken, Pettker said, “any delay that might be added to a procedure that is inevitably going to happen places that person at risk of serious, life-threatening complications,” including sepsis and organ infection.
Reporters analyzed American Hospital Association data as of August and used Catholic Health Association directories, news reports, government documents, and hospital websites and other materials to determine which hospitals are Catholic or part of Catholic systems, and gathered birth data from state health departments and hospital associations. They interviewed patients, medical providers, academic experts, advocacy organizations, and attorneys, and reviewed hundreds of pages of court and government records and guidance from Catholic health institutions and authorities to understand how the directives affect patient care.
Nationally, nearly 800,000 people have only Catholic or Catholic-affiliated birth hospitals within an hour’s drive, according to KFF Health News’ analysis. For example, that’s true of 1 in 10 North Dakotans. In South Dakota, it’s 1 in 20. When care is more than an hour away, academic researchers often define the area as a hospital desert. Pregnant women who must drive farther to a delivery facility are at higher risk of harm to themselves or their fetus, research shows.
Many Americans don’t have a choice — non-Catholic hospitals are too far to reach in an emergency or aren’t in their insurance networks. Ambulances may take patients to a Catholic facility without giving them a say. Women often don’t know that hospitals are affiliated with the Catholic Church or that they restrict reproductive care, academic research suggests.
And, in most of the country, state laws shield at least some hospitals from lawsuits for not performing procedures they object to on religious grounds, leaving little recourse for patients who were harmed because care was withheld. Thirty-five states prevent patients from suing hospitals for not providing abortions, including 25 states where abortion remains broadly legal. About half of those laws don’t include exceptions for emergencies, ectopic pregnancies, or miscarriages. Sixteen states prohibit lawsuits against hospitals for refusing to perform sterilization procedures.
“It’s hard for the ordinary citizen to understand, ‘Well, what difference does it make if my hospital is bought by this other big health system, as long as it stays open? That’s all I care about,’” said Erin Fuse Brown, who is the director of the Center for Law, Health & Society at Georgia State University and an expert in health care consolidation. Catholic directives also ban medical aid in dying for terminally ill patients.
People “may not realize that they’re losing access to important services, like reproductive health [and] end-of-life care,” she said.
‘Our Faith-Based Health Care Ministry’
After the Supreme Court ended the constitutional right to abortion in June 2022, Michigan resident Kalaina Sullivan wanted surgery to permanently prevent pregnancy.
Michigan voters in November that year enshrined the right to abortion under the state constitution, but the state’s concentration of Catholic hospitals means people like Sullivan sometimes still struggle to obtain reproductive health care.
Because her doctor worked for the Catholic chain Trinity Health, the nation’s fourth-largest hospital system, she had the surgery with a different doctor at North Ottawa Community Health System, an independent hospital near the shores of Lake Michigan.
Less than two months later, that, too, became a Catholic hospital, newly acquired by Trinity.
To mark the transition, Cory Mitchell, who at the time was the mission leader of Trinity Health Muskegon, stood before his new colleagues and offered a blessing.
“The work of your hands is what makes our faith-based health care ministry possible,” he said, according to a video of the ceremony Trinity Health provided to KFF Health News. “May these hands continue to bring compassion, compassion and healing, to all those they touch.”
Trinity Health declined to answer detailed questions about its merger with North Ottawa Community Health System and the ethical and religious directives. “Our commitment to high-quality, compassionate care means informing our patients of all appropriate care options, and trusting and supporting our physicians to make difficult and medically necessary decisions in the best interest of their patients’ health and safety,” spokesperson Jennifer Amundson said in an emailed statement. “High-quality, safe care is critical for the women in our communities and in cases where a non-critical service is not available at our facility, the physician will transfer care as appropriate.”
Leaders in Catholic-based health systems have hammered home the importance of the church’s directives, which are issued by the U.S. Conference of Catholic Bishops, all men, and were first drafted in 1948. The essential view on abortion is as it was in 1948. The last revision, in 2018, added several directives addressing Catholic health institution acquisitions or mergers with non-Catholic ones, including that “whatever comes under control of the Catholic institution — whether by acquisition, governance, or management — must be operated in full accord with the moral teaching of the Catholic Church.”
“While many of the faithful in the local church may not be aware of these requirements for Catholic health care, the local bishop certainly is,” wrote Sister Doris Gottemoeller, a former board member of the Bon Secours Mercy Health system, in a 2023 Catholic Health Association journal article. “In fact, the bishop should be briefed on a regular basis about the hospital’s activities and strategies.”
Now, for care at a non-Catholic hospital, Sullivan would need to travel nearly 30 miles.
“I don’t see why there’s any reason for me to have to follow the rules of their religion and have that be a part of what’s going on with my body,” she said.
Risks Come With Religion
Nathaniel Hibner, senior director of ethics at the Catholic Health Association, said the ethical and religious directives allow clinicians to provide medically necessary treatments in emergencies. In a pregnancy crisis when a person’s life is at risk, “I do not believe that the ERDs should restrict the physician in acting in the way that they see medically indicated.”
“Catholic health care is committed to the health of all women and mothers who enter into our facilities,” Hibner said.
The directives permit care to cure “a proportionately serious pathological condition of a pregnant woman” even if it would “result in the death of the unborn child.” Hibner demurred when asked who defines what that means and when such care is provided, saying, “for the most part, the physician and the patients are the ones that are having a conversation and dialogue with what is supposed to be medically appropriate.”
It is common for practitioners at any hospital to consult an ethics board about difficult cases — such as whether a teenager with cancer can decline treatment. At Catholic hospitals, providers must ask a board for permission to perform procedures restricted by the religious directives, clinicians and researchers say. For example, could an abortion be performed if a pregnancy threatened the mother’s life?
How and when an ethics consultation occurs depends on the hospital, Hibner said. “That ethics consultation can be initiated by anyone involved in the direct care of that situation — the patient, the surrogate of that patient, the physician, the nurse, the social worker all have the ability to request a consultation,” he said. When asked whether a consultation with an ethics board can occur without a request, he said “sometimes it could.”
How strictly directives are followed can depend on the hospital and the views of the local bishop.
“If the hospital has made a difficult decision about a critical pregnancy or an end-of-life care situation, the bishop should be the first to know about it,” Gottemoeller wrote.
In an interview, Gottemoeller said that even when pregnancy termination decisions are made on sound ethical grounds, not informing the bishop puts him in a bad position and hurts the church. “If there’s a possibility of it being misunderstood, or misinterpreted, or criticized,” Gottemoeller said, the bishop should understand what happened and why “before the newspapers call him and ask him for an opinion.”
“And if he has to say, ‘Well, I think you made a mistake,’ well, all right,” she said. “But don’t let him be blindsided. I mean, we’re one church and the bishop has pastoral concern over everything in his diocese.”
Katherine Parker Bryden, a nurse midwife in Iowa who works for MercyOne, said she regularly tells pregnant patients that the hospital cannot perform tubal sterilization surgery, to prevent future pregnancies, or refer patients to other hospitals that do. MercyOne is one of the largest health systems in Iowa. Nearly half of general hospitals in the state are Catholic or Catholic-affiliated — the highest share among all states.
The National Catholic Bioethics Center, an ethics authority for Catholic health institutions, has said that referrals for care that go against church teaching would be “immoral.”
“As providers, you’re put in this kind of moral dilemma,” Parker Bryden said. “Am I serving my patients or am I serving the archbishop and the pope?”
In response to questions, MercyOne spokesperson Eve Lederhouse said in an email that its providers “offer care and services that are consistent with the guidelines of a Catholic health system.”
Maria Rodriguez, an OB-GYN professor at Oregon Health & Science University, said that as a resident in the early 2000s at a Catholic hospital she was able to secure permission — what she calls a “pope note” — to sterilize some patients with conditions such as gestational diabetes.
Annie Iriye, a retired OB-GYN in Washington state, said that more than a decade ago she sought permission to administer medication to hasten labor for a patient experiencing a second-trimester miscarriage at a Catholic hospital. She said she was told no because the fetus had a heartbeat. The patient took 10 hours to deliver — time that would have been cut by half, Iriye said, had she been able to follow her own medical training and expertise. During that time, she said, the patient developed an infection.
Iriye and Chin were part of an effort by reproductive rights groups and medical organizations that pushed for a state law to protect physicians if they act against Catholic hospital restrictions. The bill, which Washington enacted in 2021, was opposed by the Washington State Hospital Association, whose membership includes multiple large Catholic health systems.
State lawmakers in Oregon in 2021 enacted legislation that beefed up powers to reject health care mergers if they would reduce access to the types of care constrained by Catholic directives. The hospital lobby has sued to block the statute. Washington state lawmakers introduced similar legislation last year, which the hospital association opposes.
Hibner said Catholic hospitals are committed to instituting systemic changes that improve maternal and child health, including access to primary, prenatal, and postpartum care. “Those are the things that I think rural communities really need support and advocacy for,” he said.
Maldonado, the nurse midwife, still thinks of her patient who was forced to stay pregnant with a baby who could not survive. “To feel like she was going to have to fight to have an abortion of a baby that she wanted?” Maldonado said. “It was just horrible.”
KFF Health News data editor Holly K. Hacker contributed to this report.
Click to open the methodology Methodology
By Hannah Recht
KFF Health News identified areas of the country where patients have only Catholic hospital options nearby. The “Ethical and Religious Directives for Catholic Health Care Services” — which are issued by the U.S. Conference of Catholic Bishops, all men — dictate how patients receive reproductive care at Catholic health facilities. In our analysis, we focused on hospitals where babies are born.
We constructed a national database of hospital locations, identified which ones are Catholic or Catholic-affiliated, found how many babies are born at each, and calculated how many people live near those hospitals.
Hospital Universe
We identified hospitals in the 50 states and the District of Columbia using the American Hospital Association database from August 2023. We removed hospitals that had closed or were listed more than once, added hospitals that were not included, and corrected inaccurate or out-of-date information about ownership, primary service type, and location. We excluded federal hospitals, such as military and Indian Health Service facilities, because they are not open to everyone.
Catholic Affiliation
To identify Catholic hospitals, we used the Catholic Health Association’s member directory. We also counted as Catholic a handful of hospitals that are not part of this voluntary membership group but explicitly follow the Ethical and Religious Directives, according to their mission statements, websites, or promotional materials.
We also tracked Catholic-affiliated hospitals: those that are owned or managed by a Catholic health system, such as CommonSpirit Health or Trinity Health, and are influenced by the religious directives but do not necessarily adhere to them in full. To identify Catholic-affiliated hospitals, we consulted health system and hospital websites, government documents, and news reports.
We combined both Catholic and Catholic-affiliated hospitals for analysis, in line with previous research about the influence of Catholic directives on health care.
Births
To determine the share of births that occur at Catholic or Catholic-affiliated hospitals, we gathered the latest annual number of births by hospital from state health departments. Where recent data was not publicly available, we submitted records requests for the most recent complete year available.
The resulting data covered births in 2022 for nine states and D.C., births in 2021 for 23 states, births in 2020 for nine states, and births in 2019 for one state. We used data from the 2021 American Hospital Association survey, the latest available at the time of analysis, for the eight remaining states that did not provide birth data in response to our requests. A small number of hospitals have recently opened or closed labor and delivery units. The vast majority of the rest record about the same number of births each year. This means that the results would not be substantially different if data from 2023 were available.
We used this data to calculate the number of babies born in Catholic and Catholic-affiliated hospitals, as well as non-Catholic hospitals by state and nationally.
We used hospitals’ Catholic status as of August 2023 in this analysis. In 10 cases where the hospital had already closed, we used Catholic status at the time of the closure.
Because our analysis focuses on hospital care, we excluded births that occurred in non-hospital settings, such as homes and stand-alone birth centers, as well as federal hospitals.
Several states suppressed data from hospitals with fewer than 10 births due to privacy restrictions. Because those numbers were so low, this suppression had a negligible effect on state-level totals.
Drive-Time Analysis
We obtained hospitals’ geographic coordinates based on addresses in the AHA dataset using HERE’s geocoder. For addresses that could not be automatically geocoded with a high degree of certainty, we verified coordinates manually using hospital websites and Google Maps.
We calculated the areas within 30, 60, and 90 minutes of travel time from each birth hospital that was open in August 2023 using tools from HERE. We included only hospitals that had 10 or more births as a proxy for hospitals that have labor and delivery units, or where births regularly occur.
The analysis focused on the areas with hospitals within an hour’s drive. Researchers often define hospital deserts as places where one would have to drive an hour or more for hospital care. (For example: [1] “Disparities in Access to Trauma Care in the United States: A Population-Based Analysis,” [2] “Injury-Based Geographic Access to Trauma Centers,” [3] “Trends in the Geospatial Distribution of Inpatient Adult Surgical Services Across the United States,” [4] “Access to Trauma Centers in the United States.”)
We combined the drive-time areas to see which areas of the United States have only Catholic or Catholic-affiliated birth hospitals nearby, both Catholic and non-Catholic, non-Catholic only, or none. We then joined these areas to the 2021 census block group shapefile from IPUMS NHGIS and removed water bodies using the U.S. Geological Survey’s National Hydrography Dataset to calculate the percentage of each census block group that falls within each hospital access category. We calculated the number of people in each area using the 2021 “American Community Survey” block group population totals. For example, if half of a block group’s land area had access to only Catholic or Catholic-affiliated hospitals, then half of the population was counted in that category.
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.
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Surgery won’t fix my chronic back pain, so what will?
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This week’s ABC Four Corners episode Pain Factory highlighted that our health system is failing Australians with chronic pain. Patients are receiving costly, ineffective and risky care instead of effective, low-risk treatments for chronic pain.
The challenge is considering how we might reimagine health-care delivery so the effective and safe treatments for chronic pain are available to millions of Australians who suffer from chronic pain.
One in five Australians aged 45 and over have chronic pain (pain lasting three or more months). This costs an estimated A$139 billion a year, including $12 billion in direct health-care costs.
The most common complaint among people with chronic pain is low back pain. So what treatments do – and don’t – work?
Opioids and invasive procedures
Treatments offered to people with chronic pain include strong pain medicines such as opioids and invasive procedures such as spinal cord stimulators or spinal fusion surgery. Unfortunately, these treatments have little if any benefit and are associated with a risk of significant harm.
Spinal fusion surgery and spinal cord stimulators are also extremely costly procedures, costing tens of thousands of dollars each to the health system as well as incurring costs to the individual.
Addressing the contributors to pain
Recommendations from the latest Australian and World Health Organization clinical guidelines for low back pain focus on alternatives to drug and surgical treatments such as:
- education
- advice
- structured exercise programs
- physical, psychological or multidisciplinary interventions that address the physical or psychological contributors to ongoing pain.
Two recent Australian trials support these recommendations and have found that interventions that address each person’s physical and psychological contributors to pain produce large and sustained improvements in pain and function in people with chronic low back pain.
The interventions have minimal side effects and are cost-effective.
In the RESOLVE trial, the intervention consists of pain education and graded sensory and movement “retraining” aimed to help people understand that it’s safe to move.
In the RESTORE trial, the intervention (cognitive functional therapy) involves assisting the person to understand the range of physical and psychological contributing factors related to their condition. It guides patients to relearn how to move and to build confidence in their back, without over-protecting it.
Why isn’t everyone with chronic pain getting this care?
While these trials provide new hope for people with chronic low back pain, and effective alternatives to spinal surgery and opioids, a barrier for implementation is the out-of-pocket costs. The interventions take up to 12 sessions, lasting up to 26 weeks. One physiotherapy session can cost $90–$150.
In contrast, Medicare provides rebates for just five allied health visits (such as physiotherapists or exercise physiologists) for eligible patients per year, to be used for all chronic conditions.
Private health insurers also limit access to reimbursement for these services by typically only covering a proportion of the cost and providing a cap on annual benefits. So even those with private health insurance would usually have substantial out-of-pocket costs.
Access to trained clinicians is another barrier. This problem is particularly evident in regional and rural Australia, where access to allied health services, pain specialists and multidisciplinary pain clinics is limited.
Higher costs and lack of access are associated with the increased use of available and subsidised treatments, such as pain medicines, even if they are ineffective and harmful. The rate of opioid use, for example, is higher in regional Australia and in areas of socioeconomic disadvantage than metropolitan centres and affluent areas.
So what can we do about it?
We need to reform Australia’s health system, private and public, to improve access to effective treatments for chronic pain, while removing access to ineffective, costly and high-risk treatments.
Better training of the clinical workforce, and using technology such as telehealth and artificial intelligence to train clinicians or deliver treatment may also improve access to effective treatments. A recent Australian trial, for example, found telehealth delivered via video conferencing was as effective as in-person physiotherapy consultations for improving pain and function in people with chronic knee pain.
Advocacy and improving the public’s understanding of effective treatments for chronic pain may also be helpful. Our hope is that coordinated efforts will promote the uptake of effective treatments and improve the care of patients with chronic pain.
Christine Lin, Professor, University of Sydney; Christopher Maher, Professor, Sydney School of Public Health, University of Sydney; Fiona Blyth, Professor, University of Sydney; James Mcauley, Professor of Psychology, UNSW Sydney, and Mark Hancock, Professor of Physiotherapy, Macquarie University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Behind Book Recommendations
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Q: What’s the process behind the books you recommend? You seem to have a limitless stream of recommendations
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The books we recommend are books that…
- are on Amazon—it makes things tidy, consistent, and accessible. And if you end up buying one of the books, we get a small affiliate commission*.
- we have read—we would say “obviously”, but you might be surprised how many people write about books without having read them.
- pertain in at least large part to health and/or productivity.
- are written by humans—bookish people (and especially Kindle Unlimited users) may have noticed lately that there are a lot of low quality AI-written books flooding the market, sometimes with paid 5-star reviews to bolster them. It’s frustrating, but we can tell the difference and screen those out.
- are of a certain level of quality. They don’t have to be “top 5 desert-island books”, because well, there’s one every day and the days keep coming. But they do have to genuinely deliver the value that we describe, and merit a sincere recommendation.
- are varied—we try to not give a run of “samey” books one after another. We will sometimes review a book that covers a topic another previously-reviewed book did, but it must have something about it that makes it different. It may be a different angle or a different writing style, but it needs something to set it apart.
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Chatter – by Dr. Ethan Kross
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This book is about much more than just one’s internal monologue. It does tackle that, but also the many non-verbal rabbit-holes that our brains can easily disappear into.
The author is an experimental psychologist, and brings his professional knowledge and experience to bear on this problem—citing many studies, including his own studies from his own lab, in which he undertook to answer precisely the implicit questions of “How can I…” in terms of tackling these matters, from root anxiety (for example) to end-state executive dysfunction (for example).
The writing style isn’t dense science though, and is very approachable for all.
The greatest value in this book lies in its prescriptive element, that is to say, its advice, especially in the category of evidence-based things we can do to improve matters for ourselves; beyond generic things like “mindfulness-based stress reduction” to much more specific things like “observe yourself in the 3rd person for a moment” and “take a break to imagine looking back on this later” and “interrupt yourself with a brief manual task”. With these sorts of interventions and more, we can shift the voice in our head from critic to coach.
Bottom line: if you would like your brain to let you get on with the things you actually want to do instead of constantly sidetracking you, this is the book for you.
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