Dying Shouldn’t Be So Brutal
Ira Byock, New York Times (January 31, 2015)
Where is the public outrage over needless suffering at the end of life?
The New York Times has launched a new death and dying focused section for its Opinionator series called The End. No need to guess what The End will be about. All the news that fits to print now features:
…essays by people who work in fields dealing with death and dying, like medicine, ethics and religion, as well as personal essays by those who have experienced the death of a loved one.
It appears that the above essay by Ira Byock is The End’s first post and it’s really good. I’m hopeful that other essays for this series also tackle the politics of dying with such honesty.
Meg (Death Ref’s formatting guru and enforcer) reprimands me every time I quote long(ish) text from articles but I couldn’t resist this time. Here is a great section from Byock’s essay:
It’s high time we boomers shook off our post-menopausal and “low T” malaise and reclaimed our mojo. Remember Howard Beale, the fictional news anchor brilliantly portrayed by Peter Finch in the 1976 film “Network”? Fed up with the inequities of modern life, one night Beale exhorts viewers to go to their windows and yell, “I’m as mad as hell and I’m not going to take this anymore!” We’ll figure out the details later, he says; right now it’s time to yell. And, across the country, they do.
The persistently unsafe state of dying in America should provoke a Howard Beale moment. We’ll find solutions in various white papers and Institute of Medicine reports. First, we need outrage.
Byock also references the 1970’s hospice movement in his essay and I’m glad to see that. So much knowledge and awareness about 1970’s Death Movements has been forgotten and needs to be re-discovered. It was a moment in which choosing how to die became both personal and political.
Who knew that the Gray Lady recognised the need for something like The End. The Opinionator’s editors seem to respect and understand another of Byock’s crucial points from the essay: DYING is not easy, but it needn’t be this hard.
The Death Reference Desk will most certainly keep an eye on The End.
One perk of being an academic is that you’re sometimes asked to temporarily join a cool organization as the in house scholar. It’s a win-win situation for everyone involved.
This past August, I was the Scholar in Residence at the Morbid Anatomy Museum in Brooklyn, New York.
The Morbid Anatomy Museum had only been officially open about six weeks when my Residency began and it hit two months by the time I finished. This is important because the MAM is a new institution and is in the early stages of building its intellectual, artistic, and economic infrastructure.
The Museum grew out of the Morbid Anatomy Library, started in 2008 by Museum Creative Director Joanna Ebbenstein. I have known Joanna since July 2009.
John Troyer at the MAM // Photo by Christine Colby
Some general observations on the new Morbid Anatomy Museum and its transition away from the Morbid Anatomy Library
The audiences for the films and lectures at the Museum are different than they were at the Library. I noticed this right away. The audiences were largely people who hadn’t been to many (if any) previous Museum or Library events, and weren’t entirely sure what to expect. This is good, I think. It’s bound to happen when institutions change and the Museum is in the process of building an entirely new kind of audience base. I always found the audiences for my Museum talks responsive and full of good questions. The key issue here is to maintain the Museum’s institutional integrity while building this new audience and to avoid defaulting to ‘wacky’ events in order to keep selling tickets. I don’t think that the MAM will lose sight of its intellectual foundations but, alas, economic concerns sometime begin to weigh on programming decisions. I’ve been part of those kinds of conversations many times in the past.
Another issue that became apparent to me during my Residency was that popular culture and mass media interest in death has peaked. This observation is partly related to the saturation coverage anything and everything about death is currently receiving from mainstream media outlets such as the New York Times, Vice, National Public Radio, The Guardian, Der Spiegel, etc., the list goes on and on. At a certain point, the popular culture and mass media interest will also become farcical, something that seems to already be happening.
One sidenote: reporters should really, really learn to stop using death related puns and then think that they’re clever, but I’ve long since given up on that ever happening.
The other reason that I think mainstream, popular culture interest in death has peaked is related to the research that I was doing during my Residency. I’m currently looking at 1970’s death discourse and end-of-life movements, mostly in America but also the United Kingdom. Until relatively recently, I was unaware how much popular attitudes towards death had changed from 1970-1979. It turns out that the 1970’s were a hotbed of discussion, activism, and death culture debate that significantly affected our contemporary moment. A number of groups that took shape during the 1970’s remain with us today, e.g., the death acceptance movement, the natural death movement (which advocated foregoing medical treatment to die ‘naturally’), and death with dignity groups.
“…it seems likely that eventually humans will construct for themselves a new, or at least altered, death culture and organization — a new “craft of dying” – better able to contain the new experience…I believe, as do other sociological observers…that in the ferment of activity relative to death and dying during the last two decades in the United States we have witnessed and are witnessing just such a reconstruction. Undoubtedly within this ferment, especially that emanating from the mass media, there are elements of fad and fashion – a thanatological “chic” as it were, having approximately the same level of import as organic gardening and home canning among the rich. And certainly one can never underestimate the capacity of American public discourse to transform “life and death matters” into passing enthusiasms. But there is, I believe, more to this activity than simply one more example of impermanent trendiness in modern life. Americans, especially affluent middle-class Americans, have been in the process of creating new or at least altered ways of thinking, believing, feeling, and acting about death and dying because they have been confronting a new “face of death.”
This quote is on p.16 of her book The Craft of Dying: The Modern Face of Death, which was published in 1978. If anyone reading this passage was struck by how uncannily it describes 2014, then you’re not alone. Indeed, reading Lofland’s work has been a revelation and the 1970s have become my new area of research.
Per Lofland’s forty-year-old observations, an institution such as the Morbid Anatomy Museum is made conceptually possible, I think, because of the current middle class interest in death and thanatological chic. What made the Museum physically possible was the time and labor spent building the Morbid Anatomy Library, a project that never set out to be fashionable. The challenge the Museum now faces is when death chic is replaced by another interest for the urban middle classes.
A final thought on an issue that the 1970’s were never able to solve. Affluent, mostly white middle-class Americans need to also expand their current death interests beyond themselves and begin tackling funeral and death poverty for the poor. It’s a lot easier to make elaborate home-based funerals your political cause when you’ve got the time (which translates into money) to do so. The quicker that this economic reality is recognized by today’s Happy Death Movement (a term Lofland coined in the 1970’s) the sooner longer lasting changes will occur.
The upside of these dilemmas is that even when death’s middle class fashionability dissipates, the face of death will continue to stare us all down.
In a word, the work never ends.
Many thanks to the following people who helped make my Residency so wonderful and productive:
Laetitia, Brant, Joanna, AC, Paco, Eric Sollien, Christine Colby and Lady Aye
And special thanks to:
Mac, Catherine, Daphne, Oona, and Simon
Coverage for End-of-Life Talks Gaining Ground
Pam Belluck, The New York Times (August 31, 2014)
Medicare may cover advance care planning that was once decried as “death panels,” and some private insurers are not waiting for the political process.
Maybe I’m being a bit unfair to the New York Times with this post’s title. It’s a good article. I recommend reading it.
That said, it should come as no surprise that patients, doctors, and even insurance companies (i.e., The MAN) want people to discuss end-of-life planning.
Most importantly, if people would momentarily stop saying that death is a taboo and that it’s a subject that nobody wants to discuss then it might actually encourage more of these end-of-life planning conversations.
There isn’t much to say other than this section of the AIDS Quilt was displayed on Governors Island in New York. Governors Island is beautiful and it’s been turned into a wonderful park area.
That said, seeing the Quilt this way made it feel like a Plague Island. Or an Anti-Contagion Zone of a kind.
Twenty or Twenty-five years ago, this section of the Aids Memorial Quilt would have been on display in Central Park.
In an unexpected turn of events, a section of the NAMES Project AIDS Memorial Quilt arrives in New York City next week. Most people simply call it the AIDS Memorial Quilt or even the AIDS Quilt.
It’s really worth checking out.
Here are the details:
A large piece of the AIDS Memorial Quilt will be displayed on Governors Island next week, marking its first visit to New York City in more than a decade.
The 57,600-square-foot section of the quilt — made from thousands of panels dedicated to people who have died from AIDS — will be unfolded across a football field-sized area of the island.
Visitors will be able to view the quilt from 10 a.m. to 6:30 p.m. on Aug. 11 and from 10 a.m. to 4 p.m. on Aug. 12.
A special dedication ceremony will be held from 4:30 p.m. to 6:30 p.m. on Aug. 11, and members of the public will be able to participate in a name reading ceremony.
I was able to see the AIDS Quilt a few times during the 1990s. One of those viewings involved going to the original AIDS Memorial Quilt building in San Francisco. I’ll never forget it.
Here are some videos about the Quilt in the event you have no idea what this post is about.
It is also worth noting that it’s now impossible to display the entire AIDS Quilt in one place since it’s become too large.
Today marks the final day of Death Ref’s 31 Days of Death project.
The plan was to demonstrate that it’s quite easy to write about, discuss, and point towards articles and information on death, dying, and the dead body — every day.
This is important since it challenges the always popular argument that death is a socially repressed and taboo topic.
The exact opposite is true. We 21st Century First World Humans talk about death every single day. We can’t escape it.
And we’ve got 31 Days of Death postings to prove it.
During the month of August, I will be the Scholar in Residence at the Morbid Anatomy Museum in Brooklyn.
My residency includes a series of films about death that I specifically selected for the MAM. It also features illustrated lectures about my research on death, dying, and the dead body.
Quick clue for Death Ref’s close personal friends: the films and the talks complement each other.
More than anything, I’m really excited to spend August at the Museum.
The complete listing of films and talks is below.
You can also click here to see August’s calendar on the Morbid Anatomy Museum website.
Tales from the Celluloid Coffin: A Death-themed Series of Film Screenings
Mondays 8:00 pm – 11:00 pm $5
