The White House announced Tuesday it will begin distribution of free HIV-prevention medication to people without prescription drug coverage. It’s part of Trump’s plan to end HIV in the U.S. by 2030.
Dr. BJ Miller’s new project, the Center for Dying and Living, is a website designed for people to share their stories related to living with illness, disability or loss, or their stories of caring for someone with those conditions.
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Simon & Schuster
When BJ Miller was a sophomore at Princeton University, he climbed atop a commuter train that had been parked for the night. What began as a lark took a tragic turn when 11,000 volts of electricity suddenly surged through his body.
“There was a big explosion, a big flash of light, and I was thrown … quite some distance,” Miller says. “My body was literally smoking.”
Miller survived that 1990 accident but lost both legs below the knee and half of one arm. Coming close to death and dealing with pain and disability inspired him to go into medicine and the field of disability rights.
As a palliative care physician at the University of California San Francisco’s Cancer Center, Miller draws on his own experiences to help people with their physical, emotional and spiritual pain at the end of their lives. His new book, with co-author Shoshana Berger, is A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.
Miller says it’s hard for him to regret the accident that changed his life.
“So much has flowed from it,” he says. “If I’m honest, there’s a little bit of pride. … [What] I’m a little proud of is the decision to work with this experience over time, to dig into it, to mine it, to find a creative energy in it.”
On how growing up with his mother, who had polio, influenced him
To grow up around disability from a young age, to have that carved into your worldview was, you can imagine, hugely helpful for me as a 19-year-old kid with ostensibly everything going for him. … To know in your bones that you’re on borrowed time with being “able-bodied” — I knew that. I didn’t have to learn that, and that was a huge advantage. …
In my early childhood, she used crutches and a brace and was extremely physically capable. And then, over time, from the early ’80s on, it’s just been a very slow decline to the point now where she really requires an electric wheelchair, has a little bit of ability to stand, but not for very long, etc. …
People think you’re Jesus because you’ve gone through something special. They treat you like you’ve got special knowledge, or they treat you a little bit like Frankenstein. Of course, those two responses are related. Neither of them is accurate. But that’s the kind of vibe you can get — a lot of us who have disabilities know very well. And I had seen that. I knew how to read that, thanks to my mother.
On deciding to pursue palliative medicine
I started doing a little work [in] arts advocacy and disability rights. But basically … thanks to the disability rights movement, I realized that disability is not something to be ashamed of. It’s not something to overcome, to put behind you — it’s something to work with. It doesn’t go away. I can’t overcome this; it’s my daily experience. So instead the compulsion was to work with it — in a professional way that I could make a living. And medicine lit up, theoretically, as a way where I could use these experiences and pay them forward in some way or draw from them — not overcome them and put them behind me.
On palliative care and the treatment of suffering
That’s why I think hospice and palliative medicine is so interesting. You don’t just treat pain. You treat suffering. Suffering is a multiheaded beast. … Basically palliative care is the treatment of suffering, versus the rest of medicine as the treatment of disease. …
So what is suffering? Well, suffering, there’s a lot of different ways to define it. Cicely Saunders, the grandmother of hospice work, she called it “total pain.” That [it has] a physical component, a psychological and emotional component, a spiritual component. It’s a multiheaded entity. One might say it affects how you see yourself. It affects your identity. I’ve come to understand suffering as a wedge — a gap that opens up in you. The gap between the world you have and the world you want. So, it gets at your desire, it gets at your longing, it gets at what you’re lacking.
On finding the balance between life and death, and joy and sorrow
Coming out of the back side of the experience of my own injuries, my own brush with death, etc., I came out of there eventually holding life much more loosely. So it didn’t teach me to cling to life with my fingernails, that that was the way through. It taught me some adult trick of simultaneously holding on to opposing emotions. …
Grief does this. But anyone who’s dealt with pain — chronic pain — when the clouds part even for a moment and you have the absence of pain, it’s a stunning feeling. I remember feeling that I really wanted to stay close to that interface between joy and sorrow, between pain and pleasure, between life and death. It felt like such a rich, rich place that I had been forced into. I had to hang out there for a while, but I became a little enamored of it, because from there I could just as easily get to sorrow as I could get to joy. And that to me has felt like a kind of a dexterity or an agility, something very good. … So death is close by, pain is close by — so is the rest of life. So is the good stuff. That zone, it helps me imagine what my patients are going through, being close to death.
On how he helps his patients with both their fear of dying and their fear of being dead
Fear helps point to the things that you care about, the things you love, the things you’re afraid to lose. Fear is a big important subject and really requires and demands looking at. The sooner we do, the better, because oftentimes it’s not so darn scary. … It’s helpful when patients will confess some fear to me. … People say, “Actually I’m afraid of the pain I imagine is going to happen during the dying process.” So the fear of dying, the fear of the dying process. That’s an important distinction, because any hospice and palliative medicine team can do a lot to quell the pain and the sorrow that happens during the dying process. We have medications. We have ways of being with each other. We have ways of positioning your body. There’s all sorts of things to do, so suffering is not necessarily part of the dying process. And there’s a lot of reassurance. … We understand that process pretty well, and there’s a lot we can do. So that’s an important distinction. That’s pretty concrete. That’s knowable.
Now, some of my patients will say, “That’s one thing. But I’m actually afraid of being dead. I’m afraid of being in the ground. I’m afraid of what comes next or whatever else.” Then my response, of course, is, “Well, gosh, I don’t know what that’s like either. But let’s think about it. Let’s talk about it.” And when we push on that one, I think most of us can get to a place where we realize that we’re not just our bodies — and our bodies, once they’re dead, aren’t likely to be feeling anything.
But when you push on that one, you can open up [about] what is known as [the] modern acronym of FOMO — fear of missing out. That’s very often at the heart of people’s fear of being dead — like all that they’re going to miss. And this idea that the world is going to continue on without them, all the things they’re not going to get to see, etc. But if you go there, then what has that done? That has pointed us very squarely to all the things we love and care about. And then that becomes a nice compass for our way forward, how we’re going to live until we die. The fear there, the things we are afraid to miss, are the things we really should uptick in terms of our attention now.
Sam Briger and Joel Wolfram produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.
Presidential candidates Sen. Amy Klobuchar, D-Minn., South Bend, Ind., Mayor Pete Buttigieg, Sen. Elizabeth Warren, D-Mass., former vice president Joe Biden and Sen. Bernie Sanders, I-Vt., all recognize health care a key voting concern. But polled Democrats don’t yet agree on the best solution.
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The one thing we know about health care in the 2020 Democratic presidential primary race is that it’s a top issue for voters.
The latest Tracking Poll from the Kaiser Family Foundation in late November found 24% of Democrats and Democratic-leaning independents said they want to hear the candidates discuss health care. That’s twice the total for the next top issue, climate change; and four times the total for immigration, the No. 3 issue.
The big question, though, is whether that interest will reward a candidate who backs a sweeping, “Medicare for All”-type plan, or, instead, a more modest plan like a public option, in which a person can voluntarily join a government health insurance plan, if they choose to.
Polling doesn’t make that clear. On the one hand, Democrats and Democratic-leaning respondents in the KFF poll say when it comes to health care, the candidate they trust most is Sen. Bernie Sanders of Vermont (who has been pushing a Medicare for All plan since at least 1993).
Yet those same people say they prefer a public option (of the sort supported by former Vice President Joe Biden) to Sanders’ Medicare for All plan.
That voter preference for the public option strategy was borne out in a separate Quinnipiac poll released last week, in which 36% of respondents say Medicare for All is a good idea while 52% say it is a bad idea. An NBC/Wall Street Journal poll from September found similar results: 67% of respondents said they would support allowing people under age 65 to “buy their health coverage through the Medicare program,” while only 41% favored “adopting Medicare for All, a single-payer health care system in which private health insurance would be eliminated.”
So, what the candidates now face is a question of strategy and tactics.
Sanders is all-in on Medicare for All. “I wrote the damn bill,” he keeps reminding reporters. Biden and the rising-in-the-polls Pete Buttigieg, the mayor of South Bend, Ind., are firmly in favor of a more moderate approach.
“We take a version of Medicare. We let you access it if you want to. And if you prefer to stay on your private plan, you can do that, too,” Buttigieg said at the Democrats’ October debate. “That is what most Americans want.”
Sen. Elizabeth Warren of Massachusetts looks like she is trying to have it both ways. She has unveiled a far more detailed version of Medicare for All than Sanders or other backers of the concept in Congress. And her campaign has unveiled a “first-term” health plan that could be implemented quickly, moving to a broader Medicare for All system later in her first term. (Even Warren’s transitional plan is more expansive than either Biden’s or Buttigieg’s plan.)
Who’s right? There’s no good way to tell until voters actually cast their ballots. But it might surprise people that the last time a health overhaul was a major issue in the Democratic presidential primary race ? in 2008 ? it wasn’t the candidate with the most sweeping plan who emerged as the winner.
Then-Sen. Hillary Clinton had a more sweeping plan for health care than her Senate colleague Barack Obama did. Clinton called for a cap on out-of-pocket medical expenses, and an “individual mandate” — a requirement (repealed by Republicans in 2017) that people either prove they have health coverage or pay a fine.
Obama resisted many of those specifics, particularly the mandate. “In order for you to force people to get health insurance, you’ve got to have a very harsh stiff penalty,” he said at a debate in February 2008. Eventually he called for a mandate that all children have coverage. Obama did not fully embrace the mandate that would become part of the Affordable Care Act until mid-2009, during the congressional debate.
But proponents of Medicare for All argue that Democratic primary voters have moved significantly to the left since 2008.
That is clearly the case. Still, if Democrats are to keep control of the House of Representatives, they will need to keep the loyalty of those independent voters in districts that are far more moderate than those represented by left-leaning lawmakers like Alexandria Ocasio-Cortez, D-N.Y., and Ilhan Omar, D-Minn., who are pressing for major changes, including the passage of a Medicare for All plan.
The key to becoming the Democratic presidential nominee, of course, is threading the political needle in a way that keeps the enthusiasm of the Democrats’ Medicare for All base, while not scaring away voters in swing areas who fear such major changes. So far, not one of the presidential candidates has found that perfect spot. The one who does could well be the next president.
Kaiser Health News is a nonprofit, editorially independent program of the Kaiser Family Foundation. Neither KHN nor the Kaiser Family Foundation is affiliated with Kaiser Permanente
The Cambria factory in Minnesota manufactures slabs of engineered quartz for kitchen and bathroom countertops. If businesses don’t follow worker protection rules, cutting these slabs to fit customers’ kitchens can release lung-damaging silica dust.
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Cambria
Every day, 20 to 30 trucks roll into a factory in Minnesota. They’re filled with quartz — some of it like a powder, and some of it like sparkling little pebbles, in big white sacks.
“It’s about 30 million pounds of quartz a month,” says Marty Davis, the CEO of Cambria, a company that manufactures material for kitchen and bathroom countertops. “About a million pounds a day.”
All of this quartz gets transformed into a kind of engineered stone that looks like granite and marble, but with more durability and stain resistance. Quartz countertops have really taken off over the past decade, and factories around the world are churning out slabs of the stuff under different brand names.
However, if countertop-making businesses don’t follow worker protection rules, cutting these slabs to fit customers’ kitchens can release lung-damaging silica dust.
Natural granite contains silica too, but all of the quartz that goes into engineered stone means that it contains about twice as much.
So far, 19 countertop workers in the U.S. are known to have developed severe lung disease after cutting engineered stone along with other stone; two of them died of their illness, and others have been told they will eventually require lung transplants.
Manufacturers such as Cambria say that their slabs of composite stone are completely safe when cut and polished with the proper precautions.
“There’s clear regulation and clear guidance and governance on how to process materials safely to control dust and respiratory inhalation of dust,” Davis says.
He invited NPR to tour his factory. Above the entrance is a sign that says: “Through these doors walk the finest countertop makers in the world.”
Cambria produces around 30,000 slabs of quartz countertop material every month, says Davis, who adds that the company has also spent millions of dollars on air-handling systems to control dust.
“There’s no good dust. Zero,” says Davis, who gained an appreciation of safe manufacturing practices while working in his family’s dairy business.
Cambria receives raw quartz that is then combined with a binder and pigments to produce engineered quartz slabs, which are then sent out to workshops around the country.
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Cambria
A sign warns of silica at the door to a huge room filled with mechanical mixers. There, workers wear respirators as they combine quartz, pigments and a binder. The mixture gets spread out onto what looks like a giant baking sheet, then goes through a machine that vibrates the material in a vacuum to remove any voids.
This produces a soft, compressed slab that feels almost like cookie dough. It hardens when it gets heated, then cooled and polished. The factory is filled with rows of finished slabs in different colors, ready to be sent out to countertop-makers.
Davis says these slabs go out to thousands of workshops, and he can’t follow his product to each one.
“How do you police your customers?” he says, noting that the dangers of silica have been known for decades. “There are many products that we make in our world that, if processed or consumed improperly, are dangerous.”
He says the Occupational Safety and Health Administration has clear rules on controlling worker exposure to silica. “If you follow and adhere, your employees will be safe,” Davis says.
His company’s own countertop fabrication shops prove this, he says. In addition to manufacturing slabs, Cambria runs a network of five shops that cut slabs to order.
“They’re clean as a whistle,” says Davis, adding that one of his own sons works in the shops.
In these workshops, and at the main factory, Cambria uses devices to do real-time monitoring of silica dust — something that Davis says goes above and beyond what is currently typical for the industry.
But some workers in countertop shops run by other companies say they weren’t protected from silica.
Juan (who didn’t want to use his last name because of medical privacy) says he had a job making countertops in Washington state, and a lot of what he cut was quartz.
For the first couple of years, his workplace practiced dry cutting — that means no spray of water to keep the dust down. There was so much dust, he says, he couldn’t see someone working 20 feet away.
Juan, who is now 38, says he wore a simple face mask that didn’t provide enough protection and that no one told him about silica, or the danger.
“At first you don’t feel the changes a lot,” Juan said in Spanish, speaking through an interpreter. “Then later, with time passing, your body starts telling you that you’re missing air, that you’re suffocating and you’re tired.”
In 2016, after four years at the shop, he developed a cough that wouldn’t go away, no matter what medicine he took. About a year later, a friend who was a chiropractor advised him to get his lungs tested.
At first, his doctor told him it wasn’t necessary. “Then when he did the tests, the doctor almost cried. He said, ‘I’m sorry, you’re right, your lungs are very damaged,’ ” says Juan, who has a wife and three children.
He says he can’t carry groceries and gets exhausted just walking from his house to his car. He’s being evaluated for a lung transplant.
“After this happened, they made lots of changes in the company,” Juan says. “Now they don’t cut like they used to. They bought a lot of machines and the machines do most of the work.”
Dry-cutting methods generally are cheaper because they do not require specialized equipment or water recycling systems. One survey of countertop shops in 2012 found that the majority reported using dry methods all or most of the time in at least one fabrication step.
Margaret Phillips, an occupational health expert at the University of Oklahoma Hudson College of Public Health in Oklahoma City, has done silica sampling in shops to assess worker exposures.
Water applied to cutting equipment, like this computer-operated saw, is one method to control silica dust exposure when cutting quartz slabs.
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Michael Conroy/AP
“If workers were doing mostly dry fabrication, so they were grinding, polishing, cutting, without any use of water on their tool to suppress the dust, then exposures tended to be very high,” Phillips says. “Like 20 times over the current OSHA limit, maybe even 40 times, or more. Dry fabrication is exposing workers to very, very high levels of silica dust.”
Her research has found that even just a few minutes of dry fabrication was enough to put a worker’s exposure over the permissible limit. “Any amount of dry fabrication could really be a problem,” she says.
Some shops don’t do dry cutting, like Capitol Granite near Richmond, Va. There, big computer-controlled machines cut through slabs while dumping up to 35 gallons of water a minute on the blade to keep down the silica dust.
“We do not do any dry work whatsoever. That’s the only way that you can eliminate any risk affiliated with silicosis in the shop,” says owner Paul Menninger.
He says if it were up to him, dry cutting would be illegal.
In his workplace, machine operators and workers doing touch-ups with handheld tools don’t have to wear respirators, because silica is well-controlled. Menninger knows this because he recently invited in an inspector from OSHA, who tested the air.
But he says there are a lot of shops, especially smaller operations, that government inspectors never get to. And the stone cutting industry is unlicensed.
“It’s not like plumbing or electrical or HVAC or any of the other trades,” he says, “whereby there seems to be a standard or an international code.”
Yet consumers rely on the industry and regulators to ensure that products are made safely, says Carolyn Levine, a Washington, D.C., resident who recently replaced her natural granite countertops with engineered quartz.
The lung illnesses found in the countertop industry are alarming, she says.
“Having regulations and precautions is important, and this is a good example of why,” Levine says.
She had never heard of engineered quartz before deciding to replace her old granite countertops, which she had for more than 12 years.
“I just wanted something lighter and brighter,” Levine says. “I had two guys give me estimates.”
They both were emphatic, she says, that compared to granite, the superior product was quartz.
The University of Virginia Health System has sued more than 36,000 patients for unpaid medical bills. NPR’s Lulu Garcia-Navarro speaks Dr. Michael Williams, who is fighting the practice.
LULU GARCIA-NAVARRO, HOST:
In recent months, doctors at the University of Virginia Health System discovered something that shocked them. Over several years, UVA had been suing some 36,000 patients who had unpaid medical bills. UVA was going after their wages and savings and even driving some into bankruptcy. So some UVA doctors decided to publicly push back. Dr. Michael Williams is one of them, and he joins us now.
Good morning.
MICHAEL WILLIAMS: Good morning to you.
GARCIA-NAVARRO: So you and some of your colleagues went public in a letter to Kaiser Health News. You said UVA’s billing practices violate the oldest ethic of Western medical practice, the Hippocratic oath that says, first, do no harm. Can you explain that?
WILLIAMS: Yes. Well, all of us take that oath very seriously. I can think of no physician who doesn’t. And so to find out that patients for whom we had prescribed therapies, performed surgeries, conducted procedures and the like were being sued, up to and including the point of taking their homes, felt like a betrayal to those of us who signed the letter and many others here.
GARCIA-NAVARRO: How did you learn about this?
WILLIAMS: Well, we learned about the rest – the way, I think, the rest of the world did. There was the story that broke in Kaiser Health News. And none of the faculty that I know were aware of the depth and breadth of the situation and/or how much harm had been done.
GARCIA-NAVARRO: Shouldn’t you have known sooner that this was happening since this is a place where you work?
WILLIAMS: Yes. Well, it is – yes. It is one of the more complex systems that you’ll come across. The physicians at UVA, like many other health systems, actually don’t work for the medical center. It’s a separate business entity. So we are, as physicians, not privy to the billing and collection practices of the hospital.
So on the one hand, we currently have no mechanism by which to know this information. On the other hand, I have to agree with you. It is incumbent upon us as physicians to educate ourselves on these matters and other things that are similar to – things that can cause harm like this.
GARCIA-NAVARRO: So what should be different about how UVA goes after people who owe it money?
WILLIAMS: UVA will still have to go out people who owe the system money. There is no other way to describe the U.S. health care system currently as anything but a business. We – I’ll speak for myself – are in favor of loosening the level of aggression with which we pursue outstanding accounts and certainly the elimination of lawsuits. I would rather see the health system and the practice group collectively understand our patients’ context and then probably make different choices based on that context.
GARCIA-NAVARRO: I was about to ask, Dr. Williams, does that mean that you might prescribe things differently? What impact could that have on your patients’ health and the choices that they may make?
WILLIAMS: I think in doing no harm, we also need to be into – weigh the balance of the financial harm that we will incur if we prescribe a specific course of action or therapy. We physicians need to, in my view, say, what are cost-effective, as well as clinically effective, therapies that can be offered that will achieve the patient’s clinical outcome that we’re looking for together and yet take into mind the patient’s – as I said, their context?
GARCIA-NAVARRO: The university has responded with two changes. They will screen out or go easier on a wider range of debtors, and they’ve established an advisory group to overhaul their billing practices. Do you think it’s enough?
WILLIAMS: Well, the – I think it’s not enough. I think it’s a good beginning. I think having community voice as part of this conversation is essential. But as I said, both patients and physicians have to understand the economics of this whole business that we’re in together.
GARCIA-NAVARRO: Listening to you talk about this, I can’t help but think that this puts an additional burden on doctors, who are already – if you speak to doctors – overburdened with a lot of different paperwork and having to think about patients. I mean, does that not add an extra layer to what you do?
WILLIAMS: Absolutely. And that’s the job. We have become safe when it comes to infections related to catheters. And we’ve become safe when it comes to patients who fall. We’ve become safer when it comes to things like sharp injuries from needles and sutures and the like. If we continue to cause financial harm to this degree, we have rendered our patients no safer.
GARCIA-NAVARRO: Dr. Michael Williams is a surgeon and head of the UVA Center for Health Policy. Thank you very much.
WILLIAMS: Thank you for having me.
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Waits for inpatient beds are an important factor in ER overcrowding.
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On a good day in the emergency room where we work, patients who need to be admitted to the hospital might expect to wait four or five hours, including evaluation and treatment, before they are sent upstairs to a ready bed.
On a bad day, ER patients might wait two or three times as long, and sometimes much longer.
Recently, one of us cared for a bedridden patient with chest pain who spent 47 hours in an ER hallway before a spot became available in the cardiac unit.
Keeping patients in the ER while waiting for an inpatient bed — a practice known as boarding — isn’t unique to the busy teaching hospitals where we work. According to the Centers for Disease Control and Prevention, most American hospitals have boarded patients in the ER for more than two hours while waiting for an inpatient bed.
It’s stubborn problem. A 2001 study suggested that as many as 1 in 5 ER patients is boarded. In 2006 the Institute of Medicine identified boarding as part of a “national crisis” affecting emergency care. In 2016, two-thirds of hospitals reported boarding patients in the ER or an observation unit for more than two hours, compared with 57% in 2009.
Waiting hours for a hospital bed can be maddening for patients and their families. Sometimes literally. Researchers recently found that long waits in ER hallway beds are associated with delirium, a medical condition defined by confusion and disorientation.
But boarding in the ER affects much more than patients’ state of mind. The American College of Emergency Physicians has identified boarding as one of the most important factors in ER overcrowding. And overcrowding, in turn, has been associated with everything from delays in administration of pain medication and antibiotics to longer inpatient stays, greater exposure to medical error, delayed treatment for heart attack and even increased mortality.
To understand why boarding can have so many negative consequences, think of a busy school cafeteria at lunch. No matter how efficient the cafeteria workers are at making and serving the food, processing payment and getting people through the line, no one can sit down to eat if all the tables are occupied with other students.
In our case, the emergency department can be remarkably effective at diagnosis and treatment. But if there’s nowhere for admitted patients to go, the whole operation gets bogged down and everyone’s care suffers.
If boarding is such a problem, why do hospitals allow it to continue?
The answer, as with so many things in our health care system, is complicated. But it has a lot to do with money.
Since 1975 the number of hospitals in America has declined by 30%. That’s more than 1,500 hospitals shuttered, with half a million beds lost.
Market forces have been largely responsible, as technology became more expensive, reimbursement rates were curtailed and hospitals either merged or went bankrupt. Meanwhile, annual ER visits have increased by nearly 50 million since 1995.
It looks like a basic supply and demand problem.
But here’s a curveball: Most hospitals operate, on average, at only about 65% of their total inpatient capacity — and this number has actually dropped since 1975.
How can that be?
Reimbursement is a key part of the puzzle.
Medicare, which provides insurance for about 60 million Americans, sets the bar for how much hospitals are paid, from treating pneumonia to neurosurgery. And those reimbursement rates have strongly favored invasive procedures like surgery, colonoscopy and cardiac catheterization.
Simply managing medical conditions in the hospital is much less lucrative.
Hospitals have a strong financial incentive to prioritize these procedures and to give latitude to the specialists performing them in setting their schedules. As a result, dozens of surgeries might be scheduled for a Monday morning, just a handful the following day and almost none over the weekend.
This approach creates wide variation in the number of postoperative patients needing admission to the hospital on any given day. But one thing’s for sure, a surge in post-op patients needing hospital beds means fewer beds for ER patients, which creates a bottleneck and leads to boarding. The variation in demand causes hospitals to swing between overcrowding and underutilization.
So even though we’re seeing more patients in fewer hospitals, limited capacity may not be the primary issue. It’s that we’re using existing capacity inefficiently.
A 2012 review identified inefficiency rather than insufficient beds as the root cause of boarding. Other sources of inefficiency include restricting certain beds to certain specialties, skeleton staffing during nights and weekends and poor discharge planning.
The silver lining is that efforts to improve efficiency are much less expensive than building a new hospital wing. Smoothing out surgical scheduling, for one, has been shown to yield major improvements. Cincinnati Children’s Hospital increased occupancy to 91% from 76%, made $137 million in extra revenue and avoided a $100 million expansion by rejiggering the surgical schedule and streamlining discharges.
Many hospitals are working on the problem. In the two teaching hospitals where we work in Boston, policies are in place to use observation units, affiliated community hospitals and even “home hospital,” where patients receive care from teams that visit them at home, to spare inpatient beds.
Even so, other hospitals may be falling short. Researchers found in 2012 that a majority of the most crowded hospitals had been slow to adopt the most effective measures to alleviate the bed crunch.
Could legislation be the answer? Perhaps.
In 2005, Britain instituted a maximum length of stay of four hours for all ER patients. It worked — 94% of patients were meeting that goal by 2014, although hospitals there have slipped more recently. Australia, New Zealand and Canada have had similar successes.
A legislative mandate seems far-fetched in the U.S., given the current state of Congress. Medicare has begun offering financial incentives for hospitals to address boarding, and the major accreditation organization for hospitals introduced guidelines on how to improve boarding in 2014. Neither of these measures requires action, though.
Ultimately, we suspect that what is really needed is an overhaul of the current system of financial incentives and reimbursement, coupled with penalties for hospitals that fail to act on the problem.
Until then, we’re sorry if you’re still waiting for that bed.
Clayton Dalton and Daniel Tonellato are resident physicians at Massachusetts General and Brigham & Women’s hospitals, both in Boston.
Hokyoung Kim for NPR and KHN
Nothing Jenn and Jason learned in parenting class prepared them for the challenges they’ve faced raising a child prone to violent outbursts.
The couple are parents to two siblings whom they first fostered as toddlers and later adopted. (NPR has agreed not to use the children’s names or the couple’s last names because of the sensitive nature of the family’s story.)
In some ways, the family today seems like many others. Jenn and Jason’s 12-year-old daughter is into pop star Taylor Swift and loves playing outside with her older brother. He’s 15, and his hobbies include running track and drawing pictures of superheroes. The family lives on a quiet street in central Illinois, with three cats and a rescued pit bull named Sailor.
Jenn describes their teenage son as a “kind, funny and smart kid,” most of the time.
Drawings made by Jenn and Jason’s 15-year-old son lie on the family’s dining room table in their home in central Illinois. Though his angry outbursts reveal a violent side, his parents say that most of the time he is “kind, funny and smart” — a teen who enjoys drawing pictures of superheroes.
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But starting when he was around 3 or 4 years old, even the smallest things — like being told to put on his swimsuit when he wanted to go to the pool — could set off an hours-long rage.
“In his room, his dresser would be pushed across the other side of the room,” Jason says. “His bed would be flipped up on the side. So, I mean, very violent. We’ve always said it was kind of like a light switch: It clicked on and clicked off.”
Jenn and Jason say their son’s behavior has gotten more dangerous as he has gotten older. Today he’s 6 feet tall — bigger than both of his parents.
Most of the time, Jenn says, her son directs his initial anger and aggression toward her. But when the 15-year-old has threatened to hit her, and Jason has intervened, the teen has hit his father or thrown things at him.
“The way he will look at me is just evil,” Jenn says. “He has threatened to slap me in the face. He’s called me all sorts of horrible names. After an incident like that, it’s hard to go to sleep, thinking, ‘Is he going to come in and attack us while we’re sleeping?’ “
Help Is Available
If you are experiencing abuse and need help, you can call the National Domestic Violence Hotline at 1-800-799-7233 or visit its page for an online chat.
People who are victims of domestic violence are advised to seek help. But when the abuse comes from your own child, some parents say, there’s a lack of support, understanding and effective interventions to keep the entire family safe.
While research is limited, a 2017 review of the literature found child-on-parent violence is likely a major problem that’s underreported.
Jenn says she’s concerned about everyone’s safety and worries about her 12-year-old daughter being exposed to constant violence in their home.
The stress has taken a significant mental and emotional toll on Jenn. She sees a therapist to cope with the abuse at home and to deal with her anxiety.
“There are days when it’s hard to breathe,” Jenn says. “You just feel it in your chest — like, I need a breath of air, I’m drowning. We say to each other all the time, ‘This is insanity. How can we live like this? This is out of control.’ “
Parents feel blamed and shamed into silence
It’s hard to know exactly how common Jenn and Jason’s experience is, since research is sparse. In one nationally representative survey in the mid-1970s of roughly 600 U.S. families, about 1 in 11 reported at least one incident of an adolescent child acting violently toward a parent in the previous year. In about a third of those cases, the violence was severe — ranging from punching, kicking or biting to the use of a knife or gun.
Other more recent estimates of the prevalence of child-on-parent violence range from 5% to 22% of families, which means several million U.S. families could be affected.
A 2008 study by the U.S. Justice Department found that while most domestic assault offenders are adults, about 1 in 12 who come to the attention of law enforcement are minors. In half of those cases, the victim was a parent, most often the mother.
While most children who are abused or witness domestic violence do not go on to become violent themselves, and while most people with mental illness are not violent, those life experiences have been identified as risk factors for children who abuse their parents.
Lily Anderson is a clinical social worker in the Seattle area who has worked with hundreds of families dealing with a violent child. Along with her colleague Gregory Routt, she developed a family violence intervention program for the juvenile court in King County, Wash., called Step-Up.
Anderson says, in her experience, many parents feel ashamed about their situation.
“They don’t want to tell their friends or their family members,” Anderson says. “They do feel a lot of self-blame around it: ‘I should be able to handle my child. I should be able to control this behavior.’ “
Anderson says many of the incidents take place at home, where the assaults are hidden from the public eye. That contributes to the lack of public awareness about the issue and makes it even harder for affected parents to find support.
“The whole issue becomes perceived as being the parent’s problem and the parent is to blame for the youth’s behavior,” Anderson says. “I think the main issue is that we need to talk about this. We need to talk — be willing to put it out there and make it an important issue and bring resources together for it.”
When therapy doesn’t fix it
Jenn says that she has talked to her son’s therapists about why he has such trouble regulating his emotions, and they’ve told her it could be linked to the severe trauma he experienced as a baby and toddler.
When the couple began fostering the siblings in late 2007, the boy was 3 and his sister younger than 1. They had been removed from the home of their birth parents, where police were regularly called for drug and domestic violence issues. Jenn says her son remembers being beaten by men in his home and watching as his biological mom cut herself.
Jenn, Jason and their kids together at home last spring. Before they were adopted, the kids experienced or witnessed significant abuse in their birth family, Jenn says. That severe trauma, according to therapists, is likely a source of their son’s difficulty in regulating his emotions.
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Christine Herman/Illinois Public Media
Jenn and Jason started their son in therapy at a young age, and he has been diagnosed with reactive attachment disorder, PTSD, ADHD and autism.
The teen has attended art therapy and equine therapy regularly for years. He also participated in a mentorship program and attended a school designed for children with behavioral health needs. Jenn and Jason participated in family therapy sessions with their son, where they learned coping skills and practiced de-escalating situations at home.
The teen was also prescribed medication to help regulate his emotions.
Jenn says her son enjoyed going to therapy and seemed to be making some progress, but his anger remained unpredictable.
During the worst of the conflicts, the teen has kicked holes in walls and broken appliances. He has attempted to run away from home and even created weapons to try to hurt his parents and himself. About once a month, in recent years, Jenn and Jason have had to call police to their house for help restraining their son and sometimes had to have him admitted to the hospital for a brief psychiatric stay.
“Seems like it’s not enough”
Keri Williams is a writer in North Carolina who advocates for parents raising children who have trauma-related behavioral issues, including attachment disorders that can manifest as intentional violence directed toward parents.
Williams’ own son became so violent that her family had to place him in a residential facility at age 10. He’s now 18.
“I actually thought I was the only person going through it,” Williams says. “I had no idea that this was actually a larger issue than myself.”
Williams manages a blog and Facebook page where she says parents like herself, who are often isolated and unsure of where to turn, can find others who can relate.
Many parents she meets online struggle to accept that they’re dealing with a serious domestic violence issue, she says.
“You just don’t want to think like that,” Williams says. “That’s just not how our culture is and how parents perceive things. And that denial actually is what keeps parents from getting their kids help.”
Jenn — the mother of the 15-year-old in Illinois — says parenting her son often feels like being stuck in an abusive relationship.
“But it’s different when it’s your son,” she says. “I don’t have a choice. I can’t just, you know, shove him away or break up with him.”
Jenn says any time she sees a news story about a child who has killed a parent, she worries. Such events are extremely rare, and Jenn doesn’t want to think her son is capable of that.
“But, unfortunately, the reality is, when he is in those rages and in those meltdowns, he really isn’t thinking straight, and he’s very impulsive,” Jenn says. “So, it’s very scary.”
Despite all the challenges, she and her husband both say that adopting their son has brought them a lot of joy.
“It’s made me a better, stronger person, a better and stronger wife and teacher,” Jenn says.
But, she adds, she wishes there were more effective treatments that could help kids like her son live safely in the community and more places where traumatized parents could turn to find help.
“I feel like we’re doing everything that we can for him, but it just seems like it’s not enough,” Jenn says.
A difficult decision
Right before the current school year started, Jenn and Jason made the difficult decision to send their son to a residential facility for children with severe behavioral health issues. He’s living there now.
The couple wrestled with that choice for some time. The boy had already spent almost three years in residential treatment all told, starting when he was 10. He’d moved back home last year because they thought he was ready.
But the family continued to deal with almost-daily standoffs involving verbal threats, angry outbursts and property destruction.
The boy’s 12-year-old sister says she has mixed feelings about her brother leaving home again to reenter residential treatment.
“It makes me feel happy and sad,” she says, “because, well, I love my brother. And I know he’ll be getting the help he needs.”
She’s comforted knowing her parents will be safe but says she’ll miss her brother a lot.
“I just love him,” she says. “And I don’t want to see him go through that.”
This story is part of NPR’s reporting partnership with Side Effects Public Media, Illinois Public Media and Kaiser Health News. Christine Herman is a recipient of a Rosalynn Carter Fellowship for Mental Health Journalism. Follow her on Twitter: @CTHerman.
Years ago, Portia Smith (center) suffered postpartum depression and feared seeking care because of child welfare involvement. She and her daughters Shanell Smith (right), 19, and Najai Jones Smith (left), 15, pose for a selfie after makeup artist Najai madeup everyone as they were getting ready at home on Feb. 6, 2019, to go to a movie together.
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Tom Gralish/Philadelphia Inquirer
Portia Smith’s most vivid memories of her daughter’s first year are of tears. Not the baby’s. Her own.
“I would just hold her and cry all day,” Smith recalls.
At 18, Smith was caring for two children, 4-year-old Kelaiah and newborn Nelly, with little help from her abusive relationship. The circumstances were difficult, but she knew the tears were more than that.
“I really didn’t have a connection for her,” says Smith, now a 36-year-old motivational speaker and mother of three living in Philadelphia. “I didn’t even want to breastfeed because I didn’t want that closeness with her.”
The emotions were overwhelming, but Smith couldn’t bring herself to ask for help.
“You’re afraid to say it because you think the next step is to take your children away from you,” she says. “You’re young and you’re African-American so it’s like [people are thinking] ‘she’s going to be a bad mom.'”
Smith’s concern was echoed by several women of color interviewed for this story. Maternal health experts say women often choose to struggle on their own rather than seek care and risk having their families torn apart by child welfare services.
Nationally, postpartum depression affects one in seven mothers. Medical guidelines recommend counseling for all women experiencing postpartum depression, and many women also find relief by taking general antidepressants such as fluoxetine (Prozac) and sertraline (Zoloft). In March, the Food and Drug Administration approved the first drug specifically for the treatment of postpartum depression.
But those advances help only if women in need are identified in the first place — a particular challenge for women of color and low-income moms, as they are several times more likely to suffer from postpartum mental illness, but less likely to receive treatment.
The consequences of untreated postpartum depression can be serious. A report from nine maternal mortality review committees in the United States found that mental health problems, ranging from depression to substance use or trauma, went unidentified in many cases and were a contributing factor in pregnancy-related deaths. Although rare, deaths of new moms by suicide have also been reported across the country.
Babies can suffer too, struggling to form a secure attachment with their mothers and becoming more likely to develop behavioral issues and have lower cognitive abilities.
‘I was lying to you’
For many women of color, the fear of child welfare services comes from seeing real incidents in their community, says Ayesha Uqdah, a community health worker who conducts home visits for pregnant and postpartum women in Philadelphia through the nonprofit Maternity Care Coalition.
News reports in several states and studies at the national level have found child welfare workers deem black mothers unfit at a higher rate than white mothers, even when controlling for factors like education and poverty.
During home visits, Uqdah asks clients the 10 questions on the Edinburgh Postnatal Depression Scale survey, one of the most commonly used tools to identify women at risk. The survey asks women to rate things like how often they’ve laughed or had trouble sleeping in the past week. The answers are tallied for a score out of 30, and anyone who scores above a 10 is referred for a formal clinical assessment.
Ayesha Uqdah, a community health worker with Maternity Care Coalition, meets with her client, Chaffon Williams at the Maternity Care Coalition Office in the Mantua neighborhood of Philadelphia on March 13, 2019. Uqdah helps women with high-risk pregnancies in getting the care and education that they need.
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Heather Khalifa/Philadelphia Inquirer
Uqdah remembers conducting the survey with one pregnant client, who scored a 22. The woman decided not to go for the mental-health services Uqdah recommended.
A week after having her baby, the same woman’s answers netted her a score of zero: perfect mental health.
“I knew there was something going on,” Uqdah says. “But our job isn’t to push our clients to do something they’re not comfortable doing.”
About a month later, the woman broke down and told Uqdah, “I was lying to you. I really did need services, but I didn’t want to admit it to you or myself.”
The woman’s first child had been taken into child welfare custody and ended up with her grandfather, Uqdah says. The young mother didn’t want that to happen again.
Screening tools are not one-size-fits-all
Another hurdle for women of color comes from the tools clinicians use to screen for postpartum depression.
The tools were developed based on mostly white research participants, says Alfiee Breland-Noble, an associate professor of psychiatry at Georgetown University Medical Center. Often those screening tools are less relevant for women of color.
Research shows that different cultures talk about mental illness in different ways. African-Americans are less likely to use the term “depression,” but may say they don’t feel like themselves, Breland-Noble says.
It’s also more common for people in minority communities to experience mental illness as physical symptoms. Depression can show up as headaches, for example, or anxiety as gastrointestinal issues.
Studies evaluating screening tools used with low-income, African-American mothers found they don’t catch as many women as they should. Researchers recommend lower cutoff scores for women of color, because women who need help may not be scoring high enough to trigger a follow-up under current guidelines.
Bringing treatment home
It took Portia Smith six months after her daughter Nelly’s birth to work up the courage to see a doctor about her postpartum depression.
Even then, she encountered the typical barriers faced by new moms: Therapy is expensive, wait times are long, and coordinating transportation and child care can be difficult, especially for someone struggling with depression.
But Smith was determined. She visited two different clinics until she found a good fit. After several months of therapy and medication, she began feeling better. Today, Smith and her three daughters go to weekly $5 movies and do their makeup together before each major outing.
But many moms never receive care. A recent study from the Children’s Hospital of Philadelphia found that only one in 10 women who screened positive for postpartum depression at the hospital’s urban medical practice sites sought any kind of treatment in the following six months. A study examining three years’ worth of New Jersey Medicaid claims found white women were nearly twice as likely to receive treatment as women of color.
Noticing that gap, the Maternity Care Coalition in Philadelphia decided to try something new.
In 2018, the nonprofit started a pilot program that pairs mothers with Drexel University graduate students training to be marriage and family counselors. The student counselors visit the women an hour a week and provide free in-home counseling for as many weeks as the women need. Last year the program served 30 clients. This year, the organization plans to expand the program to multiple counties in the region, and hire professional therapists.
It was a gamechanger for Stephanie Lee, a 39-year-old woman who had postpartum depression after the birth of her second child in 2017.
“It was so rough, like I was a mess, I was crying,” Lee says. “I just felt like nobody understood me.”
She felt shame asking for help, and thought it made her look weak. Lee’s mother had already helped her raise her older son when Lee was a teenager, and many members of her family had raised multiple kids close in age.
Stephanie Lee remembers the period after her son Santeno Adams, 2, was born.
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Kimberly Paynter/WHYY
“The black community don’t know postpartum,” Lee says. “There’s this expectation on us as women of color that we have to be these superhero strong, that we’re not allowed to be vulnerable.”
But with in-home therapy, no one had to know Lee was seeking treatment.
The counselors helped Lee get back to work and learn how to make time for herself — even just a few minutes in the morning to say a prayer or do some positive affirmations.
“If this is the only time I have,” Lee says, “from the time I get the shower, the time to do my hair, quiet time to myself — use it. Just use it.”
This story was reported as a partnership between The Philadelphia Inquirer, for which Aneri Pattani reports, and WHYY. You can read the original version here.
The summer kicked off with a blitz of government activity to end surprise medical billing, but lobbying, impeachment, and policy arguments have left the future of the legislation up in the air.
If you don’t have a steady source of healthy food, it’s hard to manage chronic conditions. That’s why health care providers are setting up food pantries — right in hospitals and clinics.
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There’s a new question that anti-hunger advocates want doctors and nurses to ask patients: Do you have enough food?
Public health officials say the answer often is “not really.” So clinics and hospitals have begun stocking their own food pantries in recent years.
One of the latest additions is Connectus Health, a federally funded clinic in Nashville, Tenn. This month, the rear of LaShika Taylor’s office transformed into a community cupboard.
“It’s a lot of nonperishables right now, just because we’re just starting out,” she says, but the clinic is working on refrigeration.
It’s not that patients are starving, Connectus co-director Suzanne Hurley says. It’s that they may have a lot of food one day and none the next. That’s no way to manage a disease like diabetes, she says.
“I can prescribe medications all day, but if they can’t do the other piece — which is a decent diet and just knowing they’re not going to have to miss meals,” she says, “medications have to be managed around all of those things.”
Second Harvest Food Bank of Middle Tennessee, a local food bank, is encouraging more health care providers to consider on-site pantries. The food bank also wants every patient — not just those suspected of being low income — asked about their food situation.
“We’re really pushing for universal screening, so you’re not picking who you’re asking that question to. The doctor already asks you really personal questions, and we don’t think twice about it,” says Caroline Pullen, Second Harvest’s nutrition manager. “I think people have always been scared to ask this question because they didn’t really have the resources of where to send them.”
“Food insecurity,” as it’s known, has become a particular concern among seniors. The anti-hunger group Feeding America found that more than 5 million older Americans don’t have enough food to lead a healthy life — a figure that has doubled in the last two decades.
Nashville General Hospital’s “food pharmacy” opened in February. Some shelves have high-calorie superfoods for cancer patients. Other foods are low sugar for patients with diabetes or low sodium for those with hypertension. The pantry recently added fresh garlic to help patients trying to lower the salt in their diet but maintain some flavor.
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Blake Farmer/Nashville Public Radio
In response, food banks are increasingly meeting seniors where they get their health care. Hospitals from Utah to Massachusetts are sending patients home with food.
Trudy Hoffman now gets free groceries at her monthly visits to Nashville General Hospital.
“They just asked me, did I want a bag of food to carry home?” she recalls. “And I said, ‘Yeah.’ “
The city-funded hospital started its pantry just for cancer patients in recent years but opened it to all patients this year and received a $100,000 grant in October to fund its expansion.
Organizers call it a “food pharmacy,” following the lead of places like Children’s Hospital of Philadelphia, with patients getting a “prescription” for what to pick up. Some shelves have high-calorie superfoods for cancer patients to keep their weight up. Others have low-sugar staples for people with diabetes or low-sodium items for patients with hypertension.
Vernon Rose, who oversees the Nashville General Hospital Foundation, says no one is surprised to see dozens of patients using the pantry each day.
“Because when you’re in a place like ours, where 40% of the folks can’t even afford their health care, you can imagine the choices they’re making,” she says — such as deciding whether to pay for food or pharmaceuticals.
The pantry operates mostly with grant funding. So Rose says the biggest challenge now is keeping it fully stocked with important but more expensive items like fresh produce and spices, which can be used to help patients keep some flavor while reducing salt in their diet.
This story is part of NPR’s reporting partnership with WPLN and Kaiser Health News.
