New directions in long term care post-COVID-19

So much has happened since my last blog, but while I’ve neglected my blog I’ve been busy publishing on the impact to long term care during the current crisis period and post-COVID-19. Let me tell you what I’ve been working on.

First, however, the inspiration behind my current work. I met a fellow social scientist on a blind date several years back and after a fascinating conversation I went home and bought his book. The book was Generations (1991) by Strauss and Howe and in this book, the authors used historical data dating back to the 16th century to develop a theory that largely explains the crisis period we are currently experiencing. After the 2016 elections, I re-read parts of this book and found in its pages Trump, Clinton and the current state of crisis described with eery accuracy.

Strauss and Howe argue that each generation belongs to one of four types and that these generation types repeat in a generally fixed pattern, ultimately ending in a period of secular crisis. According to the authors, Baby Boomers who are described as idealist, moralistic- and action-driven are leading us during this current crisis period and it is only something akin to a world war or a cultural revolution that can reset us. I’m counting on the cultural revolution!  The last crisis period was 1925-1942 and included the Great Depression and World War II, before that it was the U.S. Civil War.

In September 2020, I had the opportunity to publish a piece with Joanne Lynn, a hospice physician and an amazing thought-leader in long term care. In it, Joanne and I went back and forth talking about the current state of long term care in this current crisis period and how we might use this period productively to produce a better result in long term care post-COVID. The following is an excerpt from our commentary:

“Norwood: …I think we are indeed in a crisis period where extreme partisan politics, intolerance, inequities, and now a world-wide pandemic are exposing flaws we can no longer ignore in outdated policies for policing, environment and climate change, healthcare and long term care, just to name a few.  In this age of information, science and scientific method compete against the wealth of information and misinformation available via the web.  Science is too often pitted, and sometimes losing, against the proliferation of unvetted information, compounded by the hysteria-provoking commodification of the 24/7 news cycle and the cacophony of reports of ever breaking news.  What is reassuring, however, is to think of this as a predictable cyclical process where the current crisis period, if Strauss and Howe are right, will be followed by cultural change, peace, and potentially a new social order.”

Lynn: “Yes, we are in a crisis period, precipitated by COVID-19, but building on the fragile tower of dramatic increases in the gap between the well-off and nearly everyone else, with little manufacturing and an underpaid service economy.  The powerful are able to keep widening the gaps and failing to deal with social issues – because they can… We need to create an entity that takes responsibility for the well-being of everyone in a geographic area – all who are living with serious chronic conditions and disabilities.  Then, the family that is stretched beyond capacity while trying to support the matriarch of the family is part of the cohort of concern, not just those who have a doctor and a Medicare Advantage plan.  Such an entity needs data, authority, and some resources.  Many countries have such an entity, but we don’t.  I think of this rather like a school board or a government-authorized public utility” (Norwood and Lynn 2020).

Check out the rest of our commentary in the September 2020 edition of the Journal of Aging Studies: Norwood, F. and Joanne Lynn. 2020. Taking long term care from crisis to thriving in the time of COVID-19.

A Companion to the Anthropology of Death

Come check out the new collection on death and dying by anthropologist Tony Robben, A Companion to the Anthropology of Death (2018), and make sure to ask your library to order a copy.
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How can we be inundated with prime time shows such as CSI and The Walking Dead, and yet know so little about how death actually occurs in everyday life? And what might that say about the rise in assisted dying laws across the U.S.?  My chapter, The New Normal: Mediated Death and Assisted Dying in the United States, uses popular television programming and Internet usage patterns and theory by Geoffrey Gorer and Michel Foucault to explore shifts in American-held concepts of death and dying and its impact on assisted dying policy.

Read more about A Companion to the Anthropology of Death below:

Prominent scholars present their most recent work about mortuary rituals, grief and mourning, genocide, cyclical processes of life and death, biomedical developments, and the materiality of human corpses in this unique and illuminating book. Interrogating our most common practices surrounding death, the authors ask such questions as: How does the state wrest away control over the dead from bereaved relatives? Why do many mourners refuse to cut their emotional ties to the dead and nurture lasting bonds? Is death a final condition or can human remains acquire agency? The book is a refreshing reassessment of these issues and practices, a source of theoretical inspiration in the study of death.

With contributions written by an international team of experts in their fields, A Companion to the Anthropology of Death is presented in six parts and covers such subjects as: Governing the Dead in Guatemala; After Death Communications (ADCs) in North America; Cryonic Suspension in the Secular Age; Blood and Organ Donation in China; The Fragility of Biomedicine; and more. A Companion to the Anthropology of Death is a comprehensive and accessible volume and an ideal resource for senior undergraduate and graduate students in courses such as Anthropology of Death, Medical Anthropology, Anthropology of Violence, Anthropology of the Body, and Political Anthropology.

  • Written by leading international scholars in their fields
  • A comprehensive survey of the most recent empirical research in the anthropology of death
  • A fundamental critique of the early 20th century founding fathers of the anthropology of death
  • Cross-cultural texts from tribal and industrial societies
  • The collection is of interest to anyone concerned with the consequences of the state and massive violence on life and death

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.

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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.

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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:

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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.

MyDirectives.com

MyDirectives.com

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 MyDirectives.com 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.