Roadside Memorials

Every time I make the 4 1/2 hour drive to see my parents, I can't help but notice the large number of crosses, flowers, even teddy bears and balloons that adorn the roadside. Some are very well maintained, even beautiful while others make me wonder where memorials cross the line into littering. (The photo to the right is a memorial placed on the roadside where a murdered women's body was found.) When I've encountered a particularly eye catching memorial, I will admit to slightly slowing down to check it out. What I never realized until I started researching this post is how very controversial these memorials are.

The Room for Debate Blog, run by the New York Times, had a very interesting post about the ongoing battles being had over these sites. They brought in several different experts to argue both sides of the issue. Are they memorials or distractions? Beautiful folkart or driving hazards?

Attorney Robert Tiernan successfully defended a man who was accused of illegally removing a roadside memorial. He argues that these memorials are themselves illegal. They use public property for private uses. Crosses and other Christian symbols placed in public places are a violation of the separation of church and state. Memorials are a distraction and a hazard as mourners will commonly stop at inappropriate places to visit and maintain them. They are often elaborate and anchored to the ground which could be a hazard if a motorist lost control and hit one.

Another one of the blog panelists, anthropologist Sylvia Grider argues that it is a very old practice, brought over to Mexico and the Southwest US in the 17th century from Spanish colonists whose custom was to mark the site of death with a small cross. They are called descansos. And she argues that these are sacred sites, not necessarily religious even though they may contain religious symbols.

"I regard the attempts of various authorities to legislate or regulate this custom as futile and misguided because those who feel the need to memorialize their loved ones near the roadways where they died will continue to do so, regardless of legislation or other attempts at control. In many cases, where authorities have removed roadside shrines, families and loved ones simply replace them. Tradition is a powerful force in society."

So where do the states come down on this issue? Some states like Colorado, Wyoming and West Virginia put up their own memorials to cut down on the safetly issues with mourners stopping to maintain sites. (To the left are the signs placed by the state of Wyoming.) In New Mexico, where the custom is so strong, it is a misdemeanor to remove or vandalize sites. California and Montana allow memorials but only if alcohol was involved. Wisconsin and New Jersey limit the amount of time a memorial can be up. Delaware has developed a sort of roadside memorial park at some highway exits with reflection pools and victims names engraved on red bricks. This is meant to discourage the placement of memorials by giving families a safer place to grieve. Currently, many states have laws regarding roadside memorials.

Below is a clip from "Resting Places" which is a documentary on roadside memorials. The three people interviewed are lawyer Robert Tiernan, roadside memorial investigator/photographer David Nance and a mother who made a roadside memorial to her son.



This is obviously a much hotter issue than I first realized. I'm not sure what side I come down on. On one hand, it's the job of state governments to keep public spaces clean and hazard free. On the other hand, do state governments cross a line when they dictate how people can and can't grieve? My thought is that there needs to be some sort of meeting in the middle, such as the memorial parks they have in Delaware or the memorial signs that Wyoming places. What do you think?

Visqueen: Message to Garcia

Rachel Flotard is front woman to a Seattle based indie pop group called Visqueen. Their most recent album "Message to Garcia" was released this fall on Rachel's own label Local 638 Records.

The album is really an epitaph to Rachel's father who died April 7, 2008. Rachel spent 7 years living with and care giving for her father who was diagnosed and ultimately died from prostate cancer. Their house was his hospice, and her album, though upbeat was really inspired by the journey she was on with him as he died.

She told Ari Shapiro in an interview on All Things Considered, "Where I was, was in a hospital, or watching Raiders of the Lost Ark for the fiftieth time with my dad and making him a meal he couldn't keep down, this is where I was"

The only slower ballad on the album, is also the song with overt ties to her fathers death, called "So Long". The lyrics are as follows:

I'm gonna live after your gone
and I'm sorry that it took so long

I'm gonna cry I'm gonna moan
but I want it to be on my own.

I'm gonna write while you're in bed
gonna say things for the first time with my own soft hand
I'm gonna tell them all about you
What you did for me all of my life
Now an epiphany, in one dark night
and I 'm sorry, so sorry
that it took so long

What we knew never rested, to stay
I could spend forever apologizing, for one last day
taking with you what you needed to know
that it's all right to turn around and watch me go

And I'm sorry, so sorry
that it took oh it took so long
so long. And I'm sorry that it took so long.

Finishing this song before her father's death, Rachel actually played it for him. She says in her interview with Ari, "I played it for my dad once.... not realizing that the lyrics were like 'you're going to die pal'... he was like "is that about me?" (she laughs as she finishes), "and I told him 'no' and I think we went upstairs and had pea soup." Ironic that the lyrics of the song say "I'm going to say things for the first time" implying an honesty and openness, that when it came down to it, was too difficult to acknowledge.

Even the title of the album honors her father. There was an essay written by Elbert Hubbard in 1899 entitles Message to Garcia. The essay was about a solider tasked to preform a daunting mission by getting a message to a Cuban general named Garcia. The key is that this solider asked no questions, made no objections, requested no help, but accomplished the mission. It extols an attitude of working without complaining.

Her father gave Rachel this essay when she was 18, and was constantly referenced by her father. Whenever facing challenges, he father would say, "Are you delivering it [the message to Garcia]" In other words, don't complain, you can accomplish this. Apropos then for a title of an album created in the grief and challenges of loosing a parent. She made no objections, kept working, and in this album, the mission was accomplished; a beautiful epitaph to George Edward Flotard Jr.

I recommend listening to So Long from a link on the left at the All Things Considered interview.
You can see an interview of Rachel and the band from CW11's Underground series below. Her father appears at mark 6:35 in the interview.

Photo of Rachel and father: copyright Steven Dewall

Death and Harry Potter

A young boy's parents are violently murdered. His mother, in fact, died protecting him from the murderer (Voldemort). His is sent to be raised by a family who at best neglects him, at worst abuses him. He continues to be stalked through his adolescence by the same murderer who took his parent's lives. Some pretty heavy stuff, especially for a series of children's books. In the Harry Potter series the theme of death comes up over and over again. (If you're not familiar with the series, please read the Wikipedia page linked to above.)

In one interview the author, JK Rowling, commented, "My books are largely about death. They open with the death of Harry's parents. There is Voldemort's obsession with conquering death and his quest for immortality at any price, the goal of anyone with magic. I so understand why Voldemort wants to conquer death. We're all frightened of it." Given that so much of her books are about death, I wanted to take a closer look at how death is viewed within the series.

First off, death in the series is irreversible. No spell can bring back the dead. In a world with so much magic, death seems to be one of the few absolutes. There are ghosts who are said to have feared death so much they didn't cross over. There is magic that allows the dead to be seen. But nothing that brings them back.

For the most part death is something carried out by the evil on the good. This is a tendency of many children's books/movies. Even given this, death isn't always portrayed here as the ultimate bad. "To the well-organised mind, death is but the next great adventure." (Sorcerer's Stone) There are conversations that suggest there are worse things than death, namely being unable to love.

Voldemort, the bad guy, has a fear of death and seeks to escape it, even to the point of killing others to achieve immortality. He even calls his followers Deatheaters. Interesting that this quest for immortality, seeing death as the worst thing that could possibly happen to you, is an evil quality in the books.

One issue that I did have with the books, the deaths tended to be glazed over a bit. When major characters are killed off, there is some initial anger, a little sadness, but then it really doesn't dwell too much. Maybe I'm expecting too much depth from a children's book.

Overall, I think Rowling handles a difficult topic reasonably well and in an entertaining fashion. I would probably give it an A for entertain value, a B for the treatment of death, but a C for the emotional follow-through. I would be interested to know how children reading the books would view it.

I still do: Loving and Living with Alzheimer's Dementia

Judith Fox is a writer and photographer based in Southern California. Eleven years ago, having just been married to Dr. Edmund Ackell 3 short years, Judith's multi-talented husband was diagnosed with Alzheimer's disease. This strong, intelligent man, who has been a surgeon, pilot, artist, athlete and president of Virginia Commonwealth University is now the subject of Judith Fox's book "I Still Do: Loving and Living with Alzheimer's Dementia" published by powerHouse Books in Oct. 2009.

She says in an interview posted on the powerhouse website, that as a photographer, taking pictures of him was another way of loving him. In fact, it allowed her to see him more clearly.

I am always on the hunt for photographic memoirs centered around end of life issues, and this book certainly captures end of life themes. The book is 128 pages, with intimate photographs of her husband and thoughtful insights by the author to accompany the images.

Judith writes, "Alzheimer's doesn't announce itself with an ache, a pain, a limp. It rolls in like a fog. It dissipates. It leaves space for denial."

How often I hear this when speaking with families whose loved ones are in the end stages of dementia. "When did the symptoms start?" I'll ask, and always there is a hesitation. It is a fog, so gradual and faint at first, most don't even notice it's presence.

I find this photograph from the book extremely poignant when coupled with Judith's words. The illusion is as if the rest of the "real" Ed has vanished, with only a hand remaining. Next to the photo she writes that dementia, "Unveils the person we married and then replaces him with someone who doesn't know our name".

There are tender moments captured, where Ed sleeps with their cat, or rests in a chair. But there are also photo's that you see in his eyes a question. As though he is not quite sure what's occurring, or even who the photographer is.

She is very honest in her accounts as caregiver. I particularly resonated with her thoughts on delirium. She writes, "Who thought up the innocent-sounding euphemism 'sun-downing' to describe the anxious and erratic early-evening behavior? Let's be honest, here. How about 'howling at the moon'? How about 'clawing at the walls'? How about the 'twilight zone'? 'Sun-downing'? PLEASE. "

Overall the book places a soft focus on a devastating disease. Although honest in her account, one walks away with the feeling of her love and commitment to this man, instead of feeling doomed and exhausted from the disease. I suppose that's why the title is "I Still Do".

To see more photos, you can check out a series of 13 of the photographs located at Judith Fox's photography site here. To hear the author speak and read a few passages go to the powerHouse website here.

Iris

Iris is a 2001 film based on the life of Irish writer Iris Murdoch taken from the book Elegy for Iris, written by Iris Murdoch's husband, John Bayley. Murdoch died in 1999 after several years of suffering from Alzheimer's disease. The movie jumps back and forth between Murdoch's youth and the beginning of her relationship with Bayley and the later years of their marriage, as Murdoch's mind begins to slip away.

Iris Murdoch was an intelligent and independent young woman when she met John Bayley, a somewhat proper Oxford professor. He has a difficult time coming to terms with her free spirited nature and shady history(at least for the time) with men. He comments about the all different worlds Iris lives in. Later in life, as her Alzheimer's is getting worse, he again speaks about the different world she is falling into.

The film expresses the frustration and sadness of John as he watches his very intelligent wife slip into her own world. (Imagine a literary genius sitting in front of the television watching Teletubbies.) Things begin to fall apart as Iris at times becomes agitated and wanders off. John starts to fall apart as well. Below is a section from the movie. You can see how the issues of the past and present are interwoven. You can see how his frustration turns to rage and how events of the past seem to fuel this.


The way the film is structured, flashing back and forth, it compares the incidents of the past with those of the present. It compares the young, vibrant Iris with the older, demented Iris. One scene shows Iris riding on a bike with John trying to catch up with her. Then it shows the elderly John driving around town trying to find Iris who has wandered off. You see a young Iris swimming naked, carefree, then jump to an older Iris, with her husband struggling with her in the water as she becomes agitated.

I thought this movie was a good palliative care film because of how it deals with a chronic illness I see so often, Alzheimer's disease. It shows the extreme frustration that caregivers of people with dementia often feel. I also loved they way they meshed together the past and the present. I think it's intent is to bring out that even though Iris has changed so much, she is still the same person.

Unclaimed

Many of us take it for granted that when we die our loved ones, if not able to be present at the time of death, will certainly be around for the memorial service or burial.

But what of the hundreds that die completely alone each year. And what happens when no one comes to claim the body?

In the United States, that depends on where you die. Every State requires that first, unclaimed bodies must be offered to medical schools or places that use cadavers for education. After that it's either up to the county, township, city or state, depending on the statutes in place. Some states bury, some cremate. The cost of this is paid by the jurisdiction. What is the average cost? In 2008 the average cost for an unclaimed person's burial was $2,125. Some states actually have bodies sitting in morgues for years because the county or state is out of money to dispose of the body.

The numbers of unclaimed persons are on the rise, up between 25 and 50% this year, and it's not because more people are dying alone, but because families aren't able to afford it.

In France the law entitles everyone to a proper burial in a cemetery. However, taking this entitlement a step further, a volunteer group recently formed in Paris called "Les Morts de la Rue" (the dead of the streets) to make sure that every unclaimed body has at least one person present to witness the burial. Usually something is said about the date of birth and death, or the meaning of the deceased's name.

In India, there is a group called the Shaheed Bhagat Singh Sewa Dal, made up of a few volunteers who preform the last rites and cremation of the unclaimed bodies in New Delhi. They are "on call" to bestow this religious gift those who have no one.

While I couldn't find any particular organization that presides at unclaimed burials in the US, I did find a group present at soldier's burials. If you are a soldier being buried in Arlington National Cemetery, you are guaranteed to be buried with someone present. Such is the mission of the "Arlington Ladies". Created in 1973, they have ensured that since their inception, no one buried in Arlington has been buried alone. The group is made up of about 60 members of the Officers Wives Club. They volunteer once a month in pairs, to attend the average of 10-20 interments daily.

The ceremonial sequence is always the same, the Arlington Lady stands silent holding the arm of an escort from the Army's Old Guard. Once the folded flag is presented to the soldier's next of kin, the Arlington lady steps forward and presents a card and words of condolence. She then steps back to the escort and looks straight ahead for the remainder of the cermony. There is a dress code, no slacks can be worn. There is no inclement weather policy, they are present rain, snow or sun.

There is a lot of talk about dignity in death, especially in palliative care. I wonder to what extent this goes... should we be organizing grass roots volunteer groups like the Les Morts de la Rue or the Shaheed Bhagat Singh Sewa Dal for the unclaimed of our society? Or is that going too far?

*flag photo credit eqqman on Flikr

Online Funerals

While working in the field of hospice and palliative care, I'm frequently hearing about family rushing in from out of state or even from out of the country in a time of family crisis. Sometimes they are arriving to say goodbye, but often they won't make it until the funeral. So, what if they can't make it? What if financial hardship, illness, or a very long distance prevents them from making it to the funeral? Not that long ago, the answer would have been to just send flowers or a card. As technology makes our world smaller, more options arise.

This thought came to me a few days back when I heard a story of a very interesting funeral/memorial service held online via the World of Warcraft (abbreviated WoW to the savvy gamer). The World of Warcraft is a massively multiplayer online role-playing game (a computer game to those of us who are unsavvy). Someone in California can be playing with players in New York, Japan, or Italy, anywhere in the world. Literally thousands of players can be logged on playing in the same worlds at any given time. One is limited only by ones time zone and his/her preferred times of playing. Mostly players play with a set group. There are real life friendships that form in these groups.

When one of the players died in real life, her group of WoW friends decided to hold a funeral for her in the game. It was apparently quite moving for her fellow players until a rival group of players took the funeral as an opportunity to attack. The mistake was that they highly advertised the funeral service and asked to not be bothered. Naturally the group was outraged by the attack during this solemn occasion so it made news. Strange, I know, but a very interesting idea (minus the fighting). People coming together from all over the country, maybe even the world via the internet to hold a memorial service.

Is there anything out there for those who want to attend a more peaceful service from the comfort of their home offices? Apparently, some funeral homes offer live funeral webcasts. One website I found offers package deals which includes the live ceremony (password protected to prevent lookie loos), a dvd of the service and a memorial page on their site. For a price, of course. Some funeral homes offer this as a free service and it seems to be growing in popularity. (A brief search did not reveal any in my area. I guess my funeral will just have to go undownloaded.)

While I'm intrigued by the concept, it did make me ponder what is the purpose of the funeral anyway? Are we essentially voiding this purpose by just viewing it online? Is the need that draws the grieving to a funeral fulfilled by a live webcast? (And would you really want a dvd of your dearly departed's graveside service?) It's probably a personal preference thing and would be good in a dire situation (too sick to make the funeral, deployed overseas etc.) but I don't think it could/should replace the real thing. But, who knows? Maybe one day a funeral will be just a lonely open casket displayed in front of a green screen pulled up on my Dell.

Spring Awakening: "Left Behind"

There's a contemporary Broadway musical making it's way across the country this season, having closed on Broadway January 2009. Spring Awakening won 8 Tony's in 2007, including best score and best musical. Set in Germany in the 1890's, it's been referred to as a folk-infused rock musical.

The plot involves an adolescent cast that deals with very controversial themes such as sex, suicide, physical abuse, abortions, as well as education and spirituality. The musical score by Duncan Sheik with lyrics by Steven Sater is really outstanding, and I actually enjoyed the music more than the plot itself.

One of the more mellow and beautiful pieces in the musical comes after the death of one of the characters. Moritz Stiefel is an innocent boy with high expectations placed on him by his father. When he fails his finals at school, his father reacts harshly and with disdain. Moritz ultimately commits suicide and at his funeral the song "Left Behind" is sung.

There are many layers to the idea of being left behind. Traditionally you think of the people who are alive still, as being the ones "left behind", but this song incorporates a concept that it's the parts of the deceased that are left behind. The hopes, wishes, even sadness and fears of people can linger as a part of them, even when they are physically gone.

Here are the lyrics with a YouTube video of the song at the end of this post.

You fold his hands and smooth his tie, you gently lift his chin.
Were you really so blind, and unkind to him?
Can't help the itch to touch, to kiss, to hold him once again.
Now to close his eye--never open them.

A shadow passed, a shadow passed, yearning, yearning
For the fool it called a home.

All thing he never did are left behind.
All the things his mama wished he'd bear in mind,
And all his dad had hoped he'd know.

The talks you never had, the saturdays you never spent.
All the 'grown-up' places you never went.
And all of the crying you wouldn't understand.
You just let him cry, 'make a man out of him.'

A shadow passed, a shadow passed, yearning, yearning
For the fool it called a home.

All things he ever wished are left behind.
All the things his mama did to make him mind.
And how his dad had hoped he'd grow.

All things he ever lived are left behind.
All the fears that ever flickered through his mind.
All the sadness that he'd come to own.

A shadow passed, a shadow passed, yearning, yearning
For the fool it called a home.

And it whistles through the ghosts still left behind.
It whistles through the ghosts still left behind.
Whistles through the ghosts still left behind.

Towards the end of the musical there is another lovely bereavement song. Similar to "Left Behind", the sentiment is remembering those who've died by keeping them alive in the memories of those living. The song is called "Those You've Known" (follow link for full lyrics)

The song is an overlapping melody sung by 3 characters, 2 of which have died. The chorus states, "Those you've known/And lost, still walk behind you/All alone/They linger till they find you." As the song concludes, the living character Melchoir promises, "I'll walk now with them/
I’ll call on their names/I’ll see their thoughts are known. They walk with my heart/And I'll never let them go."

A good promise for those of us living to remember.

Love in a Time of HIV

December 1st is World AIDS Day. Throughout the month of December, Showtime is airing a a one hour documentary, Love in a Time of HIV. The directors Beth Jones and Nicky Lankester set out of make a documentary showing what it's like to live with HIV today. In an interview, Beth Jones commented "You remember from the press all the doom-and-gloom stories about having HIV, and the idea actually now is that it’s not about how do I live or die but it’s about how do I go about living my life, how do I go about getting married and having children?"

The documentary tells three different stories. The first is about Susan and Christina Rodriguez, a mother and daughter living in New York with HIV. Teenage Christina (pictured above) was born with HIV and diagnosed at age 3. She is now in high school and looking forward to going to college. Some of the issues she brings up are dating, wanting to have children, dealing with the perceptions of her peers. Christina's mother, Susan, runs a non-for-profit organization, SMART University, teaching women with HIV how to better take care of themselves.

The second story is about 25 year old South African Idols finalist, Tender Mavundla. Tender was voted off of Idols two weeks after she revealed her HIV status to the country. The media also picked up the story of the death of her premature infant daughter (a complication of Tender's illness). Tender lives in a community with a 40% HIV infection rate. She worries about her 17 year old sister (that she will follow in the footsteps of Tender and Tender's older sister, who is also HIV positive). She worries that there won't be a next generation in her community as those who are HIV positive are not having children or children are born with HIV. She still dreams of being a singer and adopting a baby. Below is a clip from Tender's story.


The last story is about a British couple, Andrew and Michelle. Their story centers around their attempt to safely have a child. Andrew is HIV positive and Michelle is not. Andrew talks about his frustration with having to turn to the medical community for something that he could otherwise (if not HIV positive) have done naturally. One of the reasons he wants to have a child to be able to leave something of himself behind.

What I found very interesting about this documentary is that it's not really about illness. It's about people trying to do the things that everyone else does: fall in love, go college, get married, have a family, fulfill a life long career dream. None of those featured look or act ill. The documentary really looked at HIV in a different way. As Andrew pointed out, as HIV moved from more of an acute to more of a chronic type illness, it has become "a forgotten illness". This film reminds us that there are still many out there living with HIV. They're not really thinking about dying. They're just trying to live normal lives.

Gallery: "Stillness"

Since the last gallery exhibit was entitled "restless", I wanted to explore the opposite notion of stillness.

There are moments when I walk into a patient's room that the stillness is so prevalent I have to check to see if the patient is still actually breathing. While the traditional thought of stillness is an absence of motion, stillness also refers to a quietness or calm that can actually occur in motion. I've experienced this form of stillness in dying patients' rooms as well.

It seems the most traditional way of depicting stillness in art is to display water. It is easy to capture the idea of non-movement with still water. Add some mist and a boat and you've got the most common symbol for stillness, as this photograph from unknown source depicts.

The following 3 photographs I've collaged together for better formatting, but to see the originals follow the title links. On the upper left is a variation of the water concept, sans boat and instead lovely grass sprouting from perfectly still water and reflected below. This work "Stillness" is by photograph Gunther Dippe. The next, in lower left is a photo by Kris Schirmer entitled "Stillness- and the sun shines in my heart." A fallen flower petal symbolizes an ending to me, thus this piece resonated the type of stillness I feel in the room of someone dying. Finally from a Flikr photostream by Qmanes is "Stillness" shot with an extremely long shutter speed. The motion of the water and clouds is perfectly juxtaposed to the stationary object in the lower right.



I found this abstract work to the left by Linda Cole of encaustic wax on screen entitled "Stillness in Motion" To me the motion is symbolized with the circle, while the stillness is represented by the linear portion.

Finally, sticking with the tradition of finding a sculpture, I found a digital print series that at least looks like sculpture. The series can be found at Gladys Triana's website. Of the four listed, it is "Stillness XIII"2007 that is displayed on the right.

Looking back at the art work from "restless" and comparing it to these is an exercise in itself. The emotional response the art evokes seems synonymous to the titles.

Three Rivers and Prognostication Sunglasses(?)

I'm always on the look out for palliative care topics in the movies and on television. Last week I happened to see two different television shows that I found blog worthy.

The first was an episode of Three Rivers entitled "The Luckiest Man". (The full episode is available online (legally) for a short time through the above link.) Not a program I usually watch as I generally am not a fan of medical dramas. This episode centered around Victor, a man with ALS who was in a car accident. He was already quite debilitated from the ALS. The injuries he sustained in the accident left him ventilator dependent and with no real hope to regain his previous independence. Enter a gentleman with severe lung disease and another with severe heart disease (on an LVAD as bridge to transplant).

At first, Victor is given two options, fight or die. He chooses to fight. His condition worsens and he makes a different decision. He wants to be removed from life support so that he can donate his organs. He makes a great point when he says he was only given two options but he sees a third. He wants to take back the control over his destiny that he feels he lost with his ALS. This leads to ethical dilemmas amongst the medical staff, especially the surgeon caring for Victor. Victor's plan was also complicated by his daughter who disagreed with his decision and blocked it for a short time on the grounds that she was his DPOA.

As with all medical shows, there was some inaccuracy. I'm pretty sure that you can't just choose who gets what organs. There didn't seem to be a great understanding of the whole Donation After Cardiac Death process (what can and can't be donated). Also, some confusion about the power of a DPOA. And television always screws up ventilators. All inaccuracies aside, there was some intriguing dialogue that took place.

Some of the issues that were brought up included:Is choosing to withdrawal life support suicide? What is a good death? What is quality of life? And who defines this, the doctor or the patient?

One of my favorite lines came from Victor "There's a difference between committing suicide and choosing to die with whatever dignity I have left." I found that this show often hit the nail on the head when it came to the ethical issues.

The second interesting palliative care related program I watched was an episode of Medium entitled "The Future's so Bright". (Another legally available online program, for a while.) For those unaware, Medium centers around Allison, a woman who has dreams about how people died then assists police in the capture of their murderers. In this episode, Allison develops a strange intolerance to light. She finds a pair of sunglasses to wear which turn out to be from a murdered man she has been dreaming about. When she puts them on, she begins to see strange numbers on people's foreheads which she later discovers are how many days they have left to live. (I know. Very far out there.)

My first thought, "Wow, what a useful prognostication tool to have!" Should we discharge Mr. X home with hospice? Hmm, let me put on my sunglasses. 60. Yes that would be an appropriate plan. How long will she live after we take her off the ventilator? Hmm, looks like 1 day. No need to discuss discharge options.

Ok, I know there would be a down side. Try to resist the urge to look in the mirror. I wouldn't want to look but... How do you avoid looking at your spouse's or your children's numbers? If you see a friend is going to die in two days, do you try to intervene? Maybe the intervention is what gets her killed. These were all issues explored in the show. Funny, they really didn't explore the palliative care potential.

Engage with Grace 2009

In consideration of the many family dinners that will occur over the next few days of the Thanksgiving holiday, for the second year in a row Pallimed is hosting (along with several other medical bloggers) a guest post from Engage with Grace and the One Slide Project.  This post will stay at the top of all Pallimed blogs from Tuesday the 24th until Sunday the 29th. You can also join the Engage with Grace group on Facebook.

Have a safe and meaningful Thanksgiving!

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Some conversations are easier than others

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

The Death of Mr. Hooper on Sesame Street

With November 2009 being the 40th Anniversary of Sesame Street, I wanted to feature one of the shows which dealt with the death of a major character, which I had only learned about after listening to a segment on "C is for Controversy" about Sesame Street on NPR's Talk of the Nation.

Episode 1839, titled 'Farewell, Mr. Hooper,' aired Thanksgiving Day in 1983.  The actor, Will Lee, who had played Mr. Hooper had died almost a year earlier in December of 1982, but the cast had already shot many of the episodes for the upcoming year so while the producers deliberated on how to address this issue, many episodes ran with Mr. Hooper.  Numerous options were considered: Mr. Hooper moved to Florida and retired, maybe get another actor, or simply not mention it.   Ultimately the show decided to allow the character Mr. Hooper to die as well and to discuss the topic directly on the show.  From a 1983 NY Times article:

But Dulcy Singer, the program's executive producer, said, ''we felt we ought to deal with it head-on.''

''If we left it unsaid, kids would notice,'' she said. ''Our instincts told us to be honest and straightforward.''

Child psychologists, religious leaders and other experts were consulted to help decide how to best present the death of Mr. Hooper.  This 'curriculum bath' was devised to let the writers soak in multiple different viewpoints from experts.  The staff worked with focus groups to see if the right message would resonate with children.  The whole process to write this episode and perfect it took months.  Parents were encouraged to watch the episode with their children.  It was aired Thanksgiving Day which would help ensure adults would be watching too.

Valeria Lovelace discusses her work as director of research on the show:

"Children sometimes have to face death in their own lives. They should be aware that death is permanent," Lovelace says. "We showed that life on Sesame Street would go on, that Mr. Hooper would be missed but someone else would take care of the store and look after Big Bird.

"We did not specify how Mr. Hooper died," Lovelace says. "The terms old and sick were not used."  The staff considered, then rejected, the use of film flashbacks of scenes with Mr. Hooper. "This would have confused the youngest children," Lovelace says. "For them, if something moves, it's alive."

The decision to deal with death independent of religious overtones fit with the secular educational philosophy of Sesame Street.  The main focus was to highlight that Mr. Hooper would be remembered fondly in all of the characters memories as opposed to discussing complex and family specific spiritual issues such as the existence of an afterlife.  The allowance of sadness and grief and anger as normal reactions to loss was also underscored.  The cause of death was not mentioned and thankfully they actually used the words 'died' and 'dead' instead of potentially confusing euphemisms such as 'passed away.'

The whole episode dealt with issues around coping with loss.  In one of the opening scenes a character Forgetful Jones starts hollering and forgets why he was getting so excited in the first place.  Gordon then starts asking him questions about how he is feeling which leads him to remember why he was happy.  This is then mirrored later in the show when Gordon asks Big Bird why he is feeling sad.  Later in the episode Big Bird decides to 'listen to the adults talk' while playing around them.  When they quiz Big Bird about what they were talking about he remembers many facts very well highlighting that children can pick up on things even when they seem to be inattentive.

Here is the most prominent video clip from the show demonstrating how Big Bird's friends tell him about Mr. Hooper's death.  This scene was done in one take and the actors later declined to try and go over the material again because the first take was so difficult despite his death nearly one year earlier.  Grief and sadness of losing a loved one can still come back quite strongly despite the passage of time.



Here is a transcript of some of the key parts of the above clip where Mr. Hooper's death is explained.

The actor who played Big Bird, Carroll Spinney, discusses his relationship with Mr. Hooper/Will Lee and how the show approached death and dying.  There are some real touching moments in this clip.

At the end of the show to highlight the continuity of life, as Big Bird hangs his own drawing of Mr. Hooper* all the other cast members begin fawning over a newborn baby that has come to Sesame Street.  Big Bird cheers up some and exclaims, ''You know what's amazing about new babies,'' he says. ''One day they're not here and then there they are!''

* The drawing was made by Caroll Spinney who played Big Bird and still hangs in the nest til this day.

Some other interesting trivia I found while researching this topic:

• Will Lee walked in the Macy's Thanksgiving Day parade only two days before he died.  Author Michael Davis wrote a book about Sesame Street called Street Gang and on a radio show he shared a great story about a friend from the show visiting the actor Will Lee in the hospital days before his death.  His friend said, "Will If you promise if you'll urinate for the nurses I promise the next episode will be sponsored by the letter P." 
  
• The NYT actually had a readers Ask Big Bird a questions and I found this interesting comment from an adult who was helped from watching the "Farewell, Mr. Hooper" episode as an adult. 
• Interestingly the program to donate money in your will to Sesame Street to ensure the legacy of the show is called The Hooper Society.
• There is also a book based on the episode called, "I'll Miss You Mr. Hooper."  You can find the text and images from the book at ToughPigs.com - a website for Muppet fans who never grew up. You can read their commentary about the book when they discussed it a few years back for their book club.
  
• Other times Sesame Street has dealt with death was in 2002 in the South Africa version when they introduced a HIV positive muppet child named Kami.  Here is a short transcript of one exchange highlighting the importance of memories of the deceased:

Ms. FRAN BRILL (Actor): (as Kami) This is a memory box that my mom made for me
Unidentified Man (Actor): (as character) Yeah.
Ms. BRILL: (as Kami) before she died of AIDS.
Unidentified Man (Actor): (as character) Oh, yeah. I see. And what do you do with the memory box?
Ms. BRILL: (as Kami) Well, I look at all the beautiful things
Unidentified Man (Actor): (as character) Mm-hmm.
Ms. BRILL: (as Kami) inside my memory box when I want to remember all the good times I had with my mother.

Eco-Friendly Burial

Everyone seems focused on "Going Green" these days, and the world of burial practices is no different.

I always just assumed that cremation was an eco-friendly alternative to the traditional embalming and casket burial. I have learned researching this topic that there are actually several more natural alternatives out there.

Let's talk ecology first. There are two aspects to consider in an eco-friendly burial; first the process itself shouldn't harm, pollute or tax earth's resources and second true eco-friendliness would allow the body itself to provide benefit to the earth as it biodegrades.

The touted benefits for cremation are that it takes up less land and eliminates the need for embalming. The entire purpose of embalming is to retard decomposition and prohibits the body's breakdown. Of note, according to Wikipedia, each year in the US we bury 827,060 gallons of embalming fluid!

The downsides for cremation are that the actual process of burning releases pollutants into the atmosphere, including mercury from fillings, and that it uses a tremendous amount of energy.

So the alternatives? There is a growing movement for true natural burials. Unlike traditional burials, the body is not embalmed, biodegradable caskets are used and the depth of burial is much more shallow. Biodegradable caskets can be anything from recycled paper, like the picture up top, to woven products like sea grass, willow or bamboo. Scattered in the US are cemeteries specializing in natural burial grounds. Often in these cemeteries there is the option for planting trees over the graveside and headstones are engraved natural stone that lies flush to the ground.

A similar process to cremation, without the same high energy use is Resomation. This developing format uses water and potassium hydroxide at high temperatures to dissolve the body. The end result is a white colored dust returned to the family and a green/brown liquid rich with peptides and amino acids that can be recycled into nature.

There is yet another possibility on the horizon for the eco-friendly patron called Promession. With this process the body is frozen in liquid nitrogen, shattered with vibrations, and freeze dried to remove water. Next a magnetic field is introduced to remove anything metal. The remains are placed in a corn starch coffin and buried. The body is essentially compost in 6-12 months, much quicker than the natural burial process. Also, unlike cremation, in which only inert materials remain, promession allows for organic material that provides nutrients for living things.

My hunch is that these next decades will bring even more options for the eco-friendly consumer. For more exploration related to this topic check out this 11 min video on natural burial by Mark Harris, and this interesting article on NPR "To Casket or Not to Casket"