De-Medicalizing Death

Interesting.  Just read an article from the Health Affairs blog of a UCLA study on assisted dying practices. They found:

…[A]s the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.

Only a quarter of the patients ultimately went on to ingest the lethal drugs they came requesting. The actual data is more complex: Some who requested this service did not meet the basic requirements to receive it. Others died before they had a chance to ingest the medications. But the staff from UCLA reported case after case in which patients’ goals shifted from wanting to hasten their deaths to deciding to live out the remainder of their lives.

This is exactly what I found when I did research in The Netherlands on euthanasia.  Essentially, by talking about what you need at the end of life (your hopes and fears), you find clarity and social connection making the hastening of death unnecessary for many. Healing comes (even at the end of life) in talking through what matters most to you with the people who matter most to you.



The Minka House – A Low-Cost, Backyard Alternative for Someone You Love

Bill Thomas is at it again.  Thank goodness!  After attempting to transform the nursing home from within, he has decided — and I agree — let’s get rid of the nursing home and build something entirely new.  It’s called The Minka House, a modular, one-person, fully-accessible smart home that can be custom ordered and assembled in your backyard, without breaking the bank.  It’s beautiful, wheelchair accessible and might allow you — with home supports — to keep mom or dad close to you but living independently on their own terms and in their own space.


Building on the tiny house movement, the backyard-guest house approach to aging is an idea that’s been gaining traction and one worth taking a closer look at.  This home is a modular design that can be customized, then placed in a shipping container and shipped anywhere in the world.  You choose the layout for your home and then 3-D technology is used to “print” your home using standard building materials.  On arrival it can be assembled in a matter of days with regular hand tools.

It is a simple one bedroom/efficiency that is fully wheelchair accessible with a row of windows across the front.  The interior is simple and clean and you can make it your own.

To learn more, listen to this podcast or contact Build My Minka House.

Post-Election Trump Thoughts

Has it only been less than 2 weeks?  It feels like much, much longer.  What I can say, we are all now living PT (post-Trump).  I am afraid that we may lose some of the amazing things we’ve been able to build for our parents since the passage of the Affordable Care Act and if the rhetoric flying at light speed right now gets any traction, we may also lose what we’ve come to rely on in Medicare and Medicaid.  This is a blog for people on all sides of the aisle, so let’s talk about what we want together.

Let’s talk about what the Affordable Care Act has done for us.  The Affordable Care Act not only brought coverage to many people who like my mother couldn’t afford health insurance, but it also allowed health scientists from across the U.S. to test a wide array of innovations in health and long term care.


In-home healthcare.  States have been sending community health workers and various levels of other health workers into the home to see if home-based healthcare makes a difference.  Did you know you can learn more about a person spending 5 minutes in their home than you can working with the person daily for years?  Think about it next time you visit someone’s home, then think about how that kind of information can influence how your healthcare team responds to your needs.  Because of the ACA, home-based care has been tested across the U.S. and I can’t wait to start seeing the data from these tests.

Person-directed planning.  Also being tested is a number of initiatives that have re-organized and re-focused healthcare around the wants and needs of the person receiving the care.  Think of it; it’s revolutionary.  Imagine having your healthcare team actually ask what you want and what you would like to achieve with your health.  Are your goals to attend your daughter’s wedding? to be able to participate in church activities? or is it to be able to continue with your walking group?  Ask your doctor for person-directed care and see how your health practitioners can support you in living the life you choose.

Choosing community-based over institutional long-term care.  Did you know that prior to the ACA, Medicare and Medicaid predominantly paid for institutional supports (nursing homes, hospitals stays, and the like).  Since ACA, state and federal governments have tested or grown a number of initiatives designed to keep people out of institutional care. Not only does it save money NOT to institutionalize someone, but it usually respects the wishes of the person most of whom would rather be able to stay at home or in their community.

Is is time to revolutionize how we care for our aging parents?  Absolutely.  Democrats, Republicans and all those in-between make healthcare and long term care better but just make sure you don’t throw out our parents with the bath water.

What is WAPA?

What a great set of blogs to launch our new initiative, WAPA Features. We have Queshia’s blog on the really dramatic changes in our city and how people young and old, black and white experience that and we have Gretchen’s on the 40 year history of our own organization and how young and old have experienced that. I am so excited to begin this year as President of the Washington Association of Professional Anthropologists (WAPA). I’m new to a leadership role like this and was just thinking yesterday that as I embark into this new territory for myself, that I can use the lens of anthropology to help me figure things out.

Foucault is a favorite read of mine and once you get hooked on Foucault it is hard not to see the competing discourses of youth and age, color and family background in these pieces. Foucault suggests that discourses are “in every society… controlled, selected, organized and redistributed according to a certain number of procedures, whose role is to avert its ponderous, awesome materiality” (1972:216).

WAPA brings its own set of discourses and as we move into our next decade I’d like to think about how to hold on to the traditions that brought me and my colleagues into WAPA — programs such as the monthly speaker series in which anthropologists from various backgrounds come and share their work; the happy hour and dinner that precedes the talks where I usually get to talk to old friends and new; the mentorship program; the potlucks; the outings where we often get a behind-the-scenes tour of interesting historical sites or museum exhibits; and the anthropology jobs listserv, a free service for anyone looking for the next opportunity.

I am also thinking about the discourses that resonate with younger members from various ethnic backgrounds who are coming of age in a very different employment-sparse environment. How can we use the resources we have to connect with those who are seeking education and employment today? How can we speak the language of those who rely more heavily on virtual ways of connecting? And how can we grow and rework some of our core traditions to speak to members from such different backgrounds? I think we start by dialogue — this blog where we can connect to each other in addition to a global community of anthropologists and face-to-face in traditional programs and in new programs, such as our WAPA Meetup series where WAPA members will talk theory, enjoy happy hours, and connect with students from local universities, etc. If any of this resonates or if you have ideas to share, please reach out. We are an all-volunteer organization and we are happy to have you contribute.


Frances Norwood, President 2016-2017

Washington Association of Professional Anthropologists

Source: What is WAPA?

Elsevier’s “International Encyclopedia of the Social and Behavioral Sciences” Wins PROSE Award

Check out my new encyclopedia article, End of Life Choices (pp. 594-605), in the award-winning:


Winners of the 40th Annual PROSE Awards were announced at the annual Professional and Scholarly Publishing (PSP) Conference in Washington, DC on Friday. PROSE honors the best in professional and scholarly publishing, as judged by peer publishers, librarians, academics and medical professionals.

Competition was “fierce” this year, according to AAP, with the competition attracting a record 551 entries of books, reference works, journals and electronic products in more than 54 categories.

Elsevier received eight first-place awards, including the Award for Excellence in Reference Works for the International Encyclopedia of the Social and Behavioral Sciences edited by Dr. James D. Wright

Award for Excellence in Reference Works:

International Encyclopedia of the Social and Behavioral Sciences

Editor-in-Chief, Dr. James D. Wright

This 26 Volume, second edition offers a source of social and behavioral science reference material that is broader and deeper than any other. Undergraduates, graduate students and researchers will gain a solid understanding in the interdisciplinary social and behavioral sciences. The new edition is the ideal starting point to research and studies as entries are thorough and complete with references enabling users to push their research forward.

This second edition provides a full update to the original text published in 2001 and includes over 3,900 articles from over 7,000 international and authoritative contributors. It covers rapidly evolving subjects, including psychology, neurology, evolution, artificial intelligence, and human/computer interaction.

“…represents a grand…gesture of accomplishment, fulfilling the encyclopedic 20th-century ideal of an all-encompassing corpus of work. Summing Up: Recommended.”–CHOICE, International Encyclopedia of the Social & Behavioral Sciences, Second Edition

Have We Reached a Tipping Point?

You know there have been a couple of events across our nation lately that make me wonder if we’ve reached a tipping point for real reform of end-of-life care in the United States.  Here’s what I’ve seen.

First, there was a number of states recently who passed assisted dying legislation, including Washington state in 2008, Montana in 2009, Vermont in 2013, and most recently one county in New Mexico in 2014.  Oregon was the first state to pass assistance in dying in 1994.  Then we had the highly publicized case of Brittney Maynard, a 29-year old woman with brain cancer who chose to die by assisted suicide in Oregon in November 2014.

In September 2014, the Institute of Medicine published, Dying in America:  Improving Quality and Honoring Individual Preferences Near the End of Life.  In it they clearly outline that it is time to make changes to how we care for people at the end of life, including earlier palliative care, better care coordination based on person-centered goals, attention to caregivers, and attention to physical, social, emotional, and spiritual needs of persons and their family members in the delivery of care (just to name some of the big recommendations).

Next came Atul Gawande and his book, Being Mortal:  Medicine and What Matters at the End (October 2014) and the Frontline special Being Mortal on PBS (February 10, 2015).  Dr. Gawande is a surgeon who figured out that doctors have very little training and therefore too often few skills in how to have productive end-of-life conversations with their patients.  They basically don’t know how to give news they themselves would not be comfortable receiving.  The book is excellent, however, the Frontline special left some things to be desired — like showcasing at least one end-of-life conversation as the example of how to do it well, when in fact it was a strong example of the opposite — of how NOT to have a clear and productive, while at the same time, compassionate discussion.  Regardless, what Gawande’s book and book tour has done is add another voice to the complaints many of us share around end-of-life care today.

Finally, I recently attended two conferences, the most recent one was the National Action Conference:  Policies and Payment Systems to Improve End-of-Life Care with Senators Susan Collins (R-ME) and Mark Warner (D-VA) held March 20, 2015 in Washington DC.  Atul Gawande was the key note speaker.  What I heard from Senators Collins and Warner is that perhaps the time is ripe now to realign our health care system with the wants and needs of our parents and our friends who are facing their last days.  Senators Warner and Collins agreed that the time of “death panels” and scared silence has passed and now is the time to bring end-of-life care back into the light of healthy, bipartisan debate.

Maybe we’ve reached a tipping point.

AMA asks CMS to reimburse for end of life discussions

Good news. After getting side-lined with baseless accusations of “death panels,” the American Medical Association (AMA) is asking the Centers for Medicare and Medicaid Services (CMS) to reimburse physicians for advance care planning with their patients. Patients need to make informed choices about their healthcare and physicians and other key health care providers have information patients and families need. Every year AMA makes recommendations to CMS, and this year it seems they are recommending that physicians need the time and space in their practices to talk with their patients about their options. Kudos to AMA.  This is a key step towards better informed patients and families and shared decision making by patients.

This may be the best advance directive I’ve seen out there.  Have you still not set up a plan in case you become extremely ill?  How about your family members?  Even if you have, how will someone locate the latest plan in the event of an emergency?  I think has figured it out.  It is a cloud-based advance directive that you can even add voice or video to (if you need to do something in another language other than English).  You can update it at any time and just give your provider, doctor, hospital, your close family the link to your directive.  You can even add information about life insurance and other key information you need shared in the event of your passing.  Providers can embed the link into your electronic medical record so that they always have quick access to your latest directive.  It can be used and accessed anywhere in the world via the Internet and it is free for consumers and providers to use.  Check it out. 

Videos to Help Make End of Life Discussions Better

I recently heard one of the smartest ideas about how to help make end of life decisions better. This was from a June 17, 2013 Diane Rehm Show on NPR where she interviewed two physicians from Harvard, Angelo Volandes and Aretha Delight Davis. They have created short videos that can be used by physicians to help show patients what it means, for example, to receive CPR when you are 85 and frail or what certain goals of care mean or what it’s like to live with advanced dementia. Instead of relying on every physician to be skilled at having advanced directive conversations, these videos give clinicians an important tool at the bedside to show patients what their choices mean. Visit the Advance Care Planning webpage to see samples of the videos and see segment of Diane Rehm Show below.

But conversely you’ve said that there’s a war on death in this country. Dr. Davis?
Yes. I believe there’s a war on death. As a physician, I am trained to do whatever is necessary to prolong your life. That is true irrespective of whether you are healthy as a patient, or if you’re a patient with advanced disease. That’s the guiding principle, and I will do that until and unless you tell me not too. Now, if you’re a patient with and advanced disease, and you are informed about the risks and the benefits of these interventions, and that’s how you would like for me to proceed, great. I have my marching orders. I know what I need to do.
But if you aren’t, and if you have not translated your values, your wishes, the core of who you are into some sort of medical plan, unfortunately what I will do is often times provide marginal benefit, cause great suffering to you and your family, and frankly, only postpone your death.
So Dr. Volandes, how did the idea of these videos come to you, and how did you proceed?
Sure. The story behind the videos began about a decade ago this month in fact. I was a first-day intern in residency, and I was admitting to the hospital one of the University professors of English. She had widely metastatic cancer. So I did my history, I did my physical, and then I got to that point in the conversation that all doctors have a tough time with, talking about goals of care, CPR, breathing machines.
So she looked at me and she said, Angelo, what would you do if you were in my shoes. What would I do? I was a first-day intern. Just yesterday I was a medical student, and today I’m Volandes. I had read and studied these things, goals of care, CPR, and breathing machines, but I didn’t have much experience with it. So I told the professor, well, professor, I think it’s important that we have a forest from the trees perspective, that we think about the risks and benefits for each of these interventions, but that we come to an understanding of where you are on your journey with this disease.
And then she gave me that blank look that probably all my patients gave me that first day of internship, and so I asked her naively, I said, professor would you mind taking a walk with me down to the intensive care unit so I can show you some of these things? Of course she obliged. We didn’t walk down to the ICU, I put her in a wheelchair and rolled her down to the ICU where she got to see a breathing machine. She got to see a patient on a vent. The professor was able to get a sense of the place, to hear the beeps and buzzes, to see the colorful monitors, to feel the rhythm of the ICU.
Well, as fate would have it, I obviously didn’t plan on this, but there was a code blue that was called in the ICU while we were there, and that’s when a very nervous intern thought he was going to get fired on his first day on the job. So I took the professor out of the ICU, but not before she caught of few glimpses of CPR. When we went back to her room, she looked at me and she said, words, words, words. Angelo, I understood every single word that you said before, goals of care, CPR, comfort care. I am after all a professor of English. But I had no idea that’s the sort of thing you were talking about.

Interesting article from Steve Lopez in the LA Times on emergency room charges

Steve Lopez                                                   March 31, 2012

Debbie Cassettari had outpatient foot surgery to remove a bone spur. She arrived at the surgery center at 8 a.m., left at 12:30 p.m., and the bill came to $37,000, not counting doctor fees. In recovery now from sticker shock, she’s waiting for her insurance company to do the tango with the clinic and figure out who owes what to whom.

Gary Larson has a $5,000 deductible insurance plan, but has found that his medical bills are cheaper if he claims he’s uninsured and pays cash. Using that strategy, an MRI scan of his shoulder cost him $350. His brother-in-law went to a nearby clinic for an MRI scan of his shoulder, was billed $13,000, and had to come up with $2,500.

Kaiser member Robert Merrilees had a colonoscopy at an affiliated surgery center, which charged $7,500. His co-pay was $15, Kaiser picked up $470, the rest of the bill “just went away.” Merrillees was left scratching his head over the crazy math in medical billing.

There is lots of head-scratching out there, and stories like these have poured in from across Southern California and beyond since I wrote last week about an 11-year-old girl and her $5,000 trip to an emergency room with a stomachache.

I heard from medical professionals who said fear of lawsuits leads to lots of play-it-safe tests and procedures. And some doctors and nurses argued that emergency rooms have to charge high prices because it’s extremely expensive to operate them 24 hours a day.

No doubt. But the larger point in last week’s column was that the calculus for medical charges in general is beyond comprehension, with outrageously high fees used as a starting point in a bizarre game of bargaining. Glenn Melnick, who teaches hospital finance at USC, told me it’s as crazy as if he asked to buy the TV in my living room, and I gave him a price of $1 million to start the conversation.

This is the kind of insanity that exists when medicine and medical insurance are about private profit rather than public health, when 50 million people are uninsured, when Medicare and Medicaid reimbursements don’t always cover true costs and when polarized politics prevent the kind of reasonable discussions that could lead to solutions.

In the case of Ella Moser, her grandfather — a physician and Yale professor who has written about medical overcharging —questioned the procedures that were done and the fees that were charged when she was treated in October at Providence Tarzana Medical Center. You can’t talk about rising healthcare costs and healthcare reform, he argued, without making both of those elements part of the discussion.

Ella’s father, John Moser, had a $5,000 deductible plan with Cigna, and had taken Ella to the hospital to rule out appendicitis. Nothing serious was diagnosed, and Ella went home to a quick recovery. Her dad got a bill for nearly $5,000 from the hospital, as well as bills for $540 from a pathologist and $309 from the doctor who treated her.

Like Moser, lots of patients are surprised to get separate bills like that, unaware that a hospital’s doctors can be independent contractors. It’s like going to a Laker game, paying $150 for a ticket, and later getting an additional $75 bill in the mail from Kobe Bryant.

Because of Moser’s deductible, Cigna paid no part of his bill. But the company’s contract with the hospital includes agreed-upon discounts, and those were passed on to Moser.

Just entering the emergency room had been billed at $1,288, for instance, but Moser paid Cigna’s negotiated rate of $682.64. The total charges, nearly $6,000, ended up costing him closer to $3,000.

But like his father, the doctor, Moser was left with lots of questions. How can you trust a business that bills you $1,288 but is happy to collect $682.64? Is the second number also arbitrary and perhaps artificially high? Hospitals argue that list prices are high to compensate for patients who don’t pay, but how can any patient on that spectrum know whether he’s getting a break or being ripped off?

A single-payer system would address some of this nonsense, but forget it. Even President Obama’s watered-down healthcare reform act, which may well die on the Supreme Court’s operating table, couldn’t be passed if it came up for a vote now.

Joseph Mondy, a Cigna spokesman, had some tips for anyone trying to avoid medical bankruptcy from an emergency room visit. Contact your health plan’s on-call nurse for advice on whether you need to visit an emergency room, consider a less expensive urgent care clinic if one is available, go to an in-network emergency room if possible and ask the doctor to explain why certain tests and procedures are necessary. Good advice I’m sure, but there’s not always time for all that in a genuine emergency.

Dr. Phil Schwarzman, medical director of the emergency department at Providence St. Joseph Medical Center, said 15 million of the nation’s uninsured people live in California, and he sees lots of them. From his front-line perspective, he finds it unconscionable that so many Americans have been driven into bankruptcy from medical costs, and he thinks mandated healthcare for everyone would restore some sanity to pricing.

And he speaks not just as a physician, but as a consumer.

Schwarzman has an insurance plan with a high deductible ($7,000). Like Gary Larson (the guy at the top of this column), Schwarzman also paid about $350 for a scan on himself that would have cost much more if he went with his insurance company’s negotiated rate. A couple of years ago, his daughter needed an ultrasound for a possible gallstone. If he’d gone through his insurance company, he would have been charged $3,200, with insurance paying $1,500, leaving him a $1,700 bill. He chose instead to leave insurance out of the equation and pay cash instead. The price was $250.

“It’s outrageous,” Schwarzman said. “I don’t know where they’re coming up with these numbers. Are they picking them out of a hat?”