After A Freak Accident, A Doctor Finds Insight Into ‘Living Life And Facing Death’

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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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.”


Interview highlights

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.

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A Second Can Mean So Much In A Football Game

At Saturday’s Iron Bowl, the first half seemed over. Then officials put a second back on the clock. Auburn used that second to kick a field goal, and they ended up beating Alabama by three.



DAVID GREENE, HOST:

Good morning. I’m David Greene. A second can mean so much in football. At Saturday’s Iron Bowl, the first half seemed like it was over, then officials put a second back on the clock. Auburn used that second to kick a field goal, and they ended up beating Alabama by 3. Now an Auburn dean is rubbing it in. Joe Aistrup told professors they could add a single second to final exams. He wrote, when every second counts, Auburn men and women make great things happen.

Copyright © 2019 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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Which Health Care Strategy Has The Edge Among Democrats And Swing Voters?

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

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‘There’s No Good Dust’: What Happens After Quartz Countertops Leave The Factory

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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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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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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“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.

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As University Hospital Hounds Debtors, Doctors Say It’s Doing Harm

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.

Copyright © 2019 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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