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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.

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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"

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Have you ever had that 'Aha Moment'? Have you ever been listening to a song you have heard a hundred times and suddenly it just made sense?

Listening to this podcast from Studio 360 gave me my own 'Aha Moment' as Monica Murphy describes her moment brought on by R.E.M.'s Try not to Breathe and Nightswimming on the Automatic For The People album. It's a very interesting commentary on grief and music and how the two influence each other. I myself have listened to this song many times and never gotten the potential palliative care connection until now.

I couldn't find anything that commented on what influenced the writing of the song, just some comments that the entire album is about dying and mortality. The theories out there include that it is from the perspective of someone contemplating suicide, someone dying, someone already dead. Regardless, it seems to be influenced by someone contemplating mortality. Someone who seems to be making a decision about life and death. They want their loved ones to remember them. They don't want to cause worry or be a burden. Does this sound familiar to anyone else? I can think of many of my palliative care/hospice patients who have shared similar sentiments.

But this is my interpretation. Monica Murphy has an excellent interpretation of her own.

I will try not to breathe
I can hold my head still with my hands at my knees
These eyes are the eyes of the old, shivering and bold

I will try not to breathe
This decision is mine. I have lived a full life
And these are the eyes that I want you to remember, oh

I need something to fly over my grave again
I need something to breathe

I will try not to burden you
I can hold these inside. I will hold my breath
Until all these shivers subside,
Just look in my eyes

I will try not to worry you
I have seen things that you will never see
Leave it to memory me. I shudder to breathe

I want you to remember, oh (you will never see)
I need something to fly (something to fly)
Over my grave again (you will never see)
I need something to breathe (something to breathe)
Baby, don't shiver now
Why do you shiver now? (I will see things you will never see)
I need something to fly (something to fly)
Over my grave again. (I will see things you will never see)
I need something to breathe, oh, oh, oh, oh

I will try not to worry you
I have seen things that you will never see
Leave it to memory me. Don't dare me to breathe
I want you to remember, oh (you will never see)
I need something to fly (something to fly)
Over my grave again (you will never see)
I need something to breathe (something to breathe)
Baby, don't shiver now
Why do you shiver? (I will see things you will never see)
I need something to breathe (something to breathe - I have seen things you will
never see)
I want you to remember

Thanks to R. Scott Lake who sent me the link to the podcast which inspired the above 'Aha Moment'.

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Welcome to Palliative Care Grand Rounds, the monthly review of the best of palliative care related blogs.  Welcome to Pallimed: Arts and Humanities if you have not been here before.  Take a look around this sister blog to Pallimed for some great commentary from Amber Wollesen and Amy Clarkson.

This month I am handing out awards because I am so glad to see so many bloggers talking about palliative care issues and I think some of them need to be recognized.  If you need to pick up your award, feel free to come visit me in Kansas City.

The Court Jester Award
Geripal's Dan Matlock post about the scourge of Some Other Disease (S.O.D.) as the leading killer of elderly patients was a well executed use of the old maxim: "Many a true word is spoke in jest."  I am hoping they do a post soon on The Methuselah Foundation. (And if you get a second fill out GeriPal's quick survey)

The Flower Pot Award
Angela Morrow from About.com's Palliative Care Blog discusses some of the impact of the Obama administrations relaxing of enforcement and investigation of medical marijuana users.  The education for palliative care professionals about the pros, cons, and legal risks about prescribing medical marijuana may soon need to be part of a palliative care curriculum nationwide given that Maine this week became the 5th state to approve dispensing of marijuana for medical use. (Can you name the other 3 states, besides California and Maine? - The answer is in the comments)

The World Citizen Award
Tam Royse from the Alive Hospice Blog reflected on her and her Agency's work with Hospice in the West in South Africa.  Seeing palliative care practices in other countries is a valuable exercise in understanding the luxuries and challenges we face ourselves in daily practice.  It is wonderful to see hospice programs partnering to bring together shared experiences.


The Meta Post Award
Jerry from Death Club for Cuties (next months' host of Palliative Care Grand Rounds) posted his abstract summary for his submission to the first Educational Exchange for the upcoming AAHPM Annual Assembly in Boston.  The submission is about learning about end of life issues via blogging.  Now the submission has not been accepted yet, But I heartily applaud Jerry for his openness in letting us read his abstract.  Even if it is not selected we can learn from this.  I think I might start publishing all my submissions as well.  What a great learning experience for those who want to present at conferences!

The Good Question Award
Maurice Bernstein from the Bioethics Discussion Blog asks the essential palliative care question "What is a good death?"  Sadly there are no comments from readers to this post, so if you have any opinions go leave them there.  If you don't have any opinions, then why are you reading this post? :-)

The Poetic Tragedy Award
Cancer Doc, a 'budding oncologist trying to make sense of the world' blogs about the death of one of his patients in 'Goodbye, Mr. B.'  This patient meant a lot to him.  You need to read it.  If there is one link you click on today this should be it. 

The Extroverted Introspection Award
David Tribble from the Alive Hospice Blog tells a brief but powerful story about the impact of professional caregiving for the dying.  Reading about his reflection and remembrance of a patient came at a time when I was feeling a bit calloused about the day to day work.  It was a nice refresher to remember the human side of what we do.

The Hard to Pick Just One Award
Leigh from Confessions of a Young (Looking) Social Worker was on fire with several great posts this month.  From storytelling to remarks on the administrative and bureaucratic hurdles of the hospice world, I could only pick one to highlight (but you should read more of her posts too) and that would be the one where she recounts the last time she talked with her grandmother. 

The Does This Kern Make My Font Look Fat? Award
Walter van den Broek from the blog Dr. Shock has a ton of intriguing posts every month, but one I think everyone should take a look at is his review of the new PubMed redesign.  We need more blog posts like this because there really is no other forum to talk about such matters which can have a huge impact on the gathering of medical information.  Maybe I'll write about it too.

The Speaking From Experience Award
Supa Dupa Fresh at the blog Fresh Widow makes a statement with her blog post, 'My Testimony: Reforming End of Life Care.'  A sample:

Don’t wait until there’s no “undo.” It’s the process, the conversation, that matters. Perhaps after diagnosis is too late to begin the discussion. Maybe when we hit 50 we should all talk about death. Or 40. It certainly should be part of every pre cana. Maybe it could be included in a rite of passage, if our modern lives would allow such things.

Read her post and give her a few words of support in her mission.

The Obligatory Halloween Award
We are reviewing October posts and since Halloween is one of my favorite times of year, I wanted to feature Keith Johnson from the Hospice Foundation of America blog, who reposted a 2008 article about Dia de los Muertos, the Mexican Day of the Dead.  Great overview of how a entire culture can embrace end of life issues through public remembrance.  I hope that more people can share this unique event so that we may take some of the positive growth from it and spread it among those we care for.

The Kleenex Award
Thaddeus Pope from the blog Medical Futility did not need to write any commentary after posting the YouTube video about Baxter the Therapy Dog at San Diego Hospice who recently died October 16, 2009. 



Thanks for reading this month's Palliative Care Grand Rounds.  Get ready for December which will be hosted by Jerry at Death Club for Cuties.  If you are a palliative care related blogger and are interested in hosting an upcoming session, please email me ctsinclair@gmail.com Also, PCGR now has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.

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In lieu of Halloween's passing, I find it a nice excuse to visit the macabre. Last year we looked at artist Laurie Lipton's pencil drawings, using skeletons as the subject. This year I've come across an incredibly fascinating artist by the name of Kris Kuksi, who also uses skeletons.

Kris was born in Springfield, Missouri in 1973 and raised in rural Kansas, somewhat isolated from the world. His website says that "the grotesque to him, as it seemed, was beautiful". Perhaps those of us who take care of dying patients daily could say the same about death itself.

His art has become his statement against what he feels is mankind's frivolous and frail focus on greed and materialism. Again from his website, "He hopes that his art exposes the fallacies of Man, unveiling a new level of awareness to the viewer".

The piece "Through Death United"(2007) is done with mixed media. The two central skeletons are placed together like a couple recently wed. However from the title, perhaps just reunited after death. There is a small child's skeleton lying above them. It appears like one happy family. The real treat of Kris's work is in the details. Looking at the pictures, I wish I could actually see these in person and view the action taking place. Little figures climb the woman's leg. Their are animals and houses placed everywhere.

The use of a skeleton to most symbolizes mortality. The personification of death for Kris brings attention to this human fear. "There is a fear of this consciousness because it drops in upon us without mercy, and yet there is a need to appeal to it in order to provide a sense of security".

The other piece to share is "Sanctuary of the Bewildered"( 2009). In this selection the skeleton remains central, however the story of the piece seems less centered on death. I notice there are many wheels, large gas lights, and military figures holding rockets. There also seems to be more nationalities represented in the figures. My interpretation is that in mankind's attempt to create a "sanctuary", or a place of refuge and protection, we've done nothing less with our technology than to create confusion. The chaos in the work is everywhere, and again, the detail just tremendous.

If you enjoy these works, check out Kris Kuksi's website which houses pictures of all his works, including detailed pictures of most of these.

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In the Bedroom is a 2001 film, based on the short story "Killings" by Andre Dubus. I don't recall anyone mentioning it, but definitely another one we should include as a top palliative care movie.

Frank Fowler is a young man spending the summer with his parents in Maine before he heads off to graduate school. He meets an older woman, Natalie, with two children and a violent ex-husband. Although he tells his mother this is just a summer fling, he seriously contemplates staying and taking a year off school.

He has just made the decision to go back to school when he is shot and killed by Natalie's ex-husband. The remainder of the film focuses on his parents, Ruth and Matt, as they try to pick up the pieces of their lives after the murder of their only child. This is made much more difficult when Frank's murderer gets out on bail and they see him walking around town, smiling at them. They find out that he will likely only be charged with manslaughter, as he claims the shooting was an accident. This pushes Matt and Ruth emotionally over the edge. We see a little of what ordinary people might be capable of in a very bad situation. I won't ruin the ending.

I really loved this movie. I loved that I felt we got to know and like Frank before he died. Although the movie was about the aftermath of his death, I felt that he was a main character from the beginning and remained a main character even after he was gone.

I loved the pace of this movie. It very slowly and carefully puts the story together and I think it makes it more real. It mixes in a lot of short scenes that at the time seem insignificant but aren't really. After Frank's death, the pace seems to slow down more, like the pace of grief. It does build to a climactic sort of ending, but after the action is over, it slows back down again. You see Matt in bed and Ruth yelling up to see if he wants coffee, just so normal.

The majority of the film deals with grief and the process by which these two people are trying to move through it. You see profound sadness, anger, guilt, blame, all the emotions you might expect. At first no one is talking to anyone. Just a lot of silent evenings in front of the TV. Then there are big blowups and finger pointing. The grief seemed very realistic to me. Ruth has an eloquent description of grief. "It comes in waves. And then nothing. Like a rest in music. No sound but so loud." (I loved the writing in this movie. Like poetry.)

So what's with the title? It seems provocative at first glance. (Again, I love the writing. So clever.) At the beginning of the film (in one of the scenes that seemed insignificant at the time), Matt, Frank and one of Natalie's children are out on a boat, trapping lobster. They find one with only one arm and this is how Matt explains what happened. "See the trap has nylon nets called heads. Two side heads to let the lobster crawl in and inside what they call a bedroom head to hold the bait and keeps them from escaping. You know the old saying twos company threes a crowd? Well, it's like that. You get more than two of these in the bedroom and chances are something like that's going to happen."

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Heartwarming movies are always a plus for me. Add to this a documentary with good end of life themes and I'm snagged.

Young@Heart (2007) is just this. It is a documentary about a singing group in Massachusetts who covers such artists as Coldplay, Sonic Youth and James Brown. The twist is that the average age of the members in the group is 81.

The movie follows the group of 24 for 6 weeks through a series of rehearsals and performances. Intermixed through the rigors of learning new songs like "Schizophrenia" by Sonic Youth, are laughable moments and trials from the health issues of chorus members.

The lessons in the film are abundant, and most center on how to make "living" more worthwhile. The singers have a sense of purpose with the group, they feel their minds are sharper as they learn and memorize songs and the necessity of being with other people during the day helps them live longer, more quality lives.

The most poignant moment for me was the night of the concert. One of the members had died, and the soloist himself is in poor health. His oxygen hisses in bursts as he sings Coldplay's "Fix you". The lyrics, which were written portraying the emotions of the death of someone dear, strike a different feeling sung by a group so familiar with death and so close to death.

The chorus member sings, "And the tears come streaming down your face/When you lose something you can't replace/When you love someone but it goes to waste/Could it be worse?"

I especially like the realness of this film. Aging is not hidden, the real battles of poor health, memory loss and death are present, however life is celebrated at all times. When I think of palliative medicine being about living life to its fullest, this movie represents that to a tee.

Following is the trailer of the film from YouTube, if the link doesn't appear as a subscriber, head to the original post to see. Also follow this link directly to Youtube to see the performance of "Fix You" I spoke of earlier.

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When most people think of Stephen King, they think of killer cars, haunted hotels, and prom nights gone wrong. Palliative care isn't generally the first thing that comes to mind. I don't usually read Stephen King as I'm not a big fan of the horror genre. When I read "The Woman in the Room" my first thought was that King had moved away from horror for this short story. But on second thought, I think it is actually a movement from supernatural horror to a real life type horror. (The picture is from the short film made in 1983.)

John is a loving son dealing with his mother's terminal cancer and severe pain issues. It is written in the third person and most of the story is like a description of an internal dialogue as John is trying to make a difficult choice. He has found a bottle of "Darvon Complex"(propoxyphene with aspirin) in his mother's medicine cabinet and he is wondering if he could end all of her suffering.

Things get worse when she is admitted to the hospital for pain control. She has a procedure that he calls a 'cortotomy' in which a needle is placed into the pain center in the brain and that area is "blown out"(This story was written in the '70s.). This procedure leaves her paralyzed but still in pain. John continues to toy with thought of giving her the pills as he visits her daily.

"She imagines the pain. But it is nonetheless real. Real to her. That is why time is so important. Your mother can no longer count time in terms of seconds and minutes and hours. She must restructure those units into days and weeks and months." What does the doctor mean when he says this? Prepare for the long haul? Since the pain is so bad, don't focus on the now, focus on the future?

John carries the pills around with him for awhile. He tells no one of his plan. He tries to talk himself out of it. If she has a roommate, then he'll be off the hook. If she says anything about the pills he gives her, he'll just put them back. In the end, everything falls into place. He gives her six Darvon tablets and then leaves the hospital to wait for the phone call.

I'll pretend for the sake of this post that six Darvon is a fatal dose. (Although I'm doubtful that it would cause any more than ringing in the ears (from the aspirin). But I'll admit that I've never given anyone six Darvon to know.) I'm not writing about this story to endorse John's actions or judge him either way but to acknowledge the sentiment. I have often heard "Isn't there something we can give that will make this go faster?" and "It's not fair. If my dog was suffering we could put it out of it's misery, but we can't do that for my mom?" It comes up so frequently I would categorize it as a very normal feeling.

It seems King's inspiration for the story may have come from his own life.

"Perhaps it is his fault anyway. He is the only child to have been nurtured inside her, a change of life baby. His brother was adopted when another smiling doctor told her she would never have any children of her own. And of course, the cancer now in her began in the womb like a second child, his own darker twin. His life and her death began in the same place: Should he not do what the other is doing already, so slowly and clumsily?"

King also has only one brother, who was adopted, and his mother died from uterine cancer in 1974. He is also reported to have had drinking problems around the time of his mothers death, another similarity to John in the story.


Works referenced:"The Woman in the Room" Night Shift by Stephen King.

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The nice thing about art is the ability to interpret a piece from your own perspective based on your life experiences and knowledge. Tonight I will attempt a great feat by turning a song about being left alone and ignored on the dance floor into a reminder of the importance of respect in caring for patients.

The Ting Tings released "That's Not My Name" in 2008 and it quickly spread through MySpace and eventually the UK Charts to become a dance club anthem.  The catchy yet slightly bratty lyrics feature a frustrated woman who despises being forgotten and never having anyone identify her as someone of worth.  The big bass drum beat and hand claps in the opening verse give the song a cheerleading type quality matched by lead singer Katie White's chanting style of singing.



The dramatic pause of music allows the full weight of the lyrics sink in: "With nothing to consider, they forget my name (ame, ame, ame)" the final words like a pitiful echo chamber resonating the isolation the singer feels.

After listening to this song about 20 or 30 times, the whole dance club vibe started to wear off and I began to think about this song from the point of view of a patient who may feel isolated in a hospital. With the simple reframing from dance club to a hospital many of the lines take on a different level of seriousness about the importance of respect and personhood.

Taking into consideration Mazlow's Hierachy of Needs this song clearly fits into Esteem but also has roots in the Love and Belonging level.  One could also consider it as 'continuity of self' and 'maintenance of pride' in Chochinov's Dignity Conserving Perspectives model. (free full text)  For the patient with a potential life-altering illness it is difficult to consider being able to 'accept facts' under self actualization if everything in the medical system is designed to dehumanize you one interaction at a time.

The obvious dehumanizing example in the hospital is defining patients not by their name but by age, gender and illness and location as in: "the 54 year old female with lung cancer in the ICU."  In addition the gigabytes of data, text and images which define a patient via their ever expanding medical chart (paper or digital) serve a similar dehumanizing role.

Two questions I find very helpful in making a stronger connection with patients include asking about name preference and correct name pronunciation.  "Do you like/prefer to be called ______?" "What do your friends call you?" are two easy ways to address name preference.  Even if it is classically a term of affection like 'Doll'* or a family relation like 'Gramps' if that is the patients preference even for staff to address them I go with it. (*except when it is not a term they choose themselves - see Elderspeak below)

Correct name pronunciation is probably one of my biggest social pet peeves in medical care today.  It flabbergasts me to find highly skilled and well educated professionals stop short of pronouncing a potentially difficult name; often times it may come from a culture different than the majority of staff.  If you are going to take a patient for a cholejejunostomy, colonoscopy, phlebotomy, computerized tomography, sunitinib or a palliative extubation you can surely spend 30 seconds to understand how to correctly pronounce their name be it Lee Thi Nguyen or Wilhelmina Van Rijn (not patients of mine)

Another aspect is the singer's identification of personality which also is easily reframed to a patient navigating a complex illness.  How the medical system views a patient maybe 'she's quiet' but to the person with the illness she may consider herself in better times 'a riot.'  

And lastly the refrain "Are you calling me darling? Are you calling me bird?" resonates with current research in geriatrics demonstrating the use of Elderspeak has a demoralizing effect in geriatric patients.  Although calling a patient 'darling,' 'doll' or 'bird' may seem endearing it too becomes another way to dehumanize and individual by tagging them with a generic nickname.

I have left a few other gems in the lyrics for you to interpret on your own.  Tell me if you hear some of the same themes when you listen to "That's Not My Name."


"That's Not My Name" by The Ting Tings (Columbia Records UK-2008)
Lyrics:

Four little words just to get me along
It's a difficulty and I'm biting on my tongue and I
I keep stalling, keeping me together
People around gotta find something to say now

Holding back, everyday the same
Don't wanna be a loner
Listen to me, oh no
I never say anything at all
But with nothing to consider they forget my name
(ame, ame, ame)

They call me 'hell'
They call me 'Stacey'
They call me 'her'
They call me 'Jane'
That's not my name
That's not my name
That's not my name
That's not my name

They call me 'quiet'
But I'm a riot
Mary-Jo-Lisa
Always the same
That's not my name
That's not my name
That's not my name
That's not my name

I miss the catch if they through me the ball
I'm the last kid standing up against the wall
Keep up, falling, these heels they keep me boring
Getting glammed up and sitting on the fence now

So alone all the time at night
Lock myself away
Listen to me, Oh nah.
Although I'm dressed up, out and all with
Everything considered they forget my name
(ame, ame, ame)

Male background singing:
Song was my in my head and now its in my mind
call the preacher, get some words and get some time
You know I realized. I cannot emphasize
Sitting around with just a promise, nothing binding
Whatever, can't you see? Living so desperately
Standing and choking like a vocal one-liner
Instead of sing-along this song is monotone
I gotta get some soul. I gotta get some feeling

They call me 'hell'
They call me 'Stacey'
They call me 'her'
They call me 'Jane'
That's not my name
That's not my name
That's not my name
That's not my name

They call me 'quiet'
But I'm a riot
Mary-Jo-Lisa
Always the same
That's not my name
That's not my name
That's not my name
That's not my name

Are you calling me darling?
Are you calling me bird?
Are you calling me darling?
Are you calling me bird?

Williams KN, Herman R, Gajewski B, & Wilson K (2009). Elderspeak communication: impact on dementia care. American journal of Alzheimer's disease and other dementias, 24 (1), 11-20 PMID: 18591210

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Having had many talks with families recently about the end of life phenomenon of terminal delirium or terminal restlessness, I wondered how this concept had been depicted visually in art. As with other gallery themes we've done on pain, the last breath and afterlife, I've scoured the Internet in search of interesting art.

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There is a vampire craze sweeping the nation. Can you think of a fictional monster that has been represented more in television, movies and books than the vampire? This isn't a new thing. From Dracula to Edward, vampires have been popular fiction for some time. It seems that new series are popping up all the time. The vampire is more and more becoming an icon of pop culture.

Before you think I'm being critical of this trend, here's my confession. I admit to watching True Blood. And perhaps I've read the books it is based on. I might also have read a little of Twilight...and the three other books of the series. I may have taken a day off work to see the Twilight movie the day it came out. It's a sickness, I know. I'm not the only one who has it. What is it that we see in these fictional beings? I mean, let's be honest, not exactly the most original stories out there. Mysterious, tormented vampire boy meets human girl. A difficult relationship ensues. That describes most of them.

There are a lot of different aspects to vampire lore that the media explores. Do they melt in the sunlight or just sparkle? Holy water? Crosses? Wooden stakes? There is a lot of variations out there. But one thing all the vampires do have in common is immortality. Is this the draw?

In a time of plastic surgery and anti-aging creams, it's not that surprising that we find the forever young and beautiful an interesting concept. In a society that often fears death, living forever seems alluring. This immortality is often depicted as a trade off for ones soul and bought at the expense of other's lives (drinking blood and all that). (I wonder how many people would trade their souls (or humanity, if you will) to be forever young and beautiful?)

I think what brought up this post now was a recent pondering of what the draw was for me. I am around death all day long. I wouldn't say I fear death (not as long as there is a good palliative care team around to adequately control my symptoms) or growing older. I never came up with a good philosophical answer. Probably just the romance and mystery paired with sexy actors, like everyone else. I tend to over think things.

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Bringing food to neighbors or friends after a death is a custom still seen as a part of our grieving practices. It may have started with the ancient rituals of bringing food for the deceased. In Egyptian history it was expected that the dead were given bread, beer, birds and beef. Even now, in Tibet, at all the Buddhist monasteries you will find piles of food gifts for the former Lamas.

The cultural and regional differences abound for what people typically bring. Fried chicken in the South and Jello salad's in the North. There are even names associated with foods like funeral beans, funeral potatoes and funeral pie.


Looking for some music on the subject? Kate Campbell actually wrote a folk song about funeral food. It's on her 2007 release "Sing Me Out". The lyrics are below with a link to a YouTube video of a live performance. I must say it's a very catchy song. The actual song starts about a minute and 34 seconds in, if you want to skip the talking... and as always you can go to the main pallimed site if the link doesn't show up.

With her green bean casserole
Dropped by a bowl of butter beans
Lime green tupperware everywhere
We sure eat good when someone dies

Funeral food, Funeral food

Gnawing on a corn on the cob
I don't think I've ever seen him before
She made the best chocolate cake
We sure eat good when someone dies

But come next week where will they be

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Henry Wadsworth Longfellow was born February 27th 1807. In 1831, he married Mary Storer Potter. In 1835, Mary had a miscarriage and died a few weeks later. Several of Longfellow's later works were influenced by his grief over this loss. One such work was "Mezzo Cammin" (below).

Half my life is gone, and I have let
The years slip from me and have not fulfilled
The aspiration of my youth, to build
Some tower of song with lofty parapet.
Not indolence, nor pleasure, nor the fret
Of restless passions that would not be stilled,
But sorrow, and a care that almost killed,
Kept me from what I may accomplish yet;
Though, half-way up the hill, I see the Past
Lying beneath me with its sounds and sights,--
A city in the twilight dim and vast,
With smoking roofs, soft bells, and gleaming lights,--
And hear above me on the autumnal blast
The cataract of Death far thundering from the heights.

Mezzo Cammin translates to middle journey. It comes from the opening line of The Divine Comedy. "Nel mezzo del cammin di nostra vita" ("halfway along our life's path") (Longfellow was the first American to translate The Divine Comedy and you could make parallels between the two poems.)

While poetry is definitely open to interpretation, I think this poem has a sad but still hopeful message. Longfellow sees that he has not accomplished all that he aspired to do in his youth. He attributes this not to any flaw in his character, but to "sorrow, and a care that almost killed", likely the death of his wife. But there is still hope that he may yet accomplish his goals.

Now, half way through his journey, he looks back at the Past. Maybe it's not so bad? "A city in the twilight dim and vast, with smoking roofs, soft bells, and gleaming lights." He looks up to the future and sees Death but it is far away.

When I first read this poem, my immediate impression was that Longfellow saw himself at a turning point in his life. He had been living with his grief for some time and he felt he could not be productive. It feels like he is passively looking behind him at the past and ahead to the future and seeing that he can still go on and accomplish what he has set out to do. He is starting to find hope again after a great loss. He sees (actually he hears) his end but this is far into the future. Realistic but not pessimistic.

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(cross-posted from the Main Pallimed Blog)

For the many readers of Pallimed who have not commented on the any of the blogs (Main, Arts, or Cases) I would really encourage you to break your silence and be proud to say 'long time listener, first time commenter.' Here are some of the reasons why you should comment on blog posts:

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Ronald Munson is a bioethicist who has worked for such esteemed organizations as the National Institutes of Health and the National Cancer Institute. He has also authored several non fiction books, as well as one of the most widely used medical ethics texts in the United States. His newest book "The Woman Who Decided to Die: Challenges and Choices at the Edges of Medicine" was published in 2009 by Oxford University Press.

When I read the prologue, describing that the flow of the book would be ten scenarios of real world moral dilemmas faced by Munson himself, I was pretty eager to jump in.

While the stories themselves were extremely well written and even page turning in their narrative form I was surprised with how common place I found them. I was expecting moral and ethical dilemmas that would spur hours of discussions amongst my colleagues. What I found were stories more geared to a non medical audience. For those of us in the trenches, these are a part of our daily experiences.

For instance, there was a 31 year old woman who opted to not pursue further chemo. Now it was a little edgy that she decided not to bring her husband into that decision, but I'm pretty used to people not wanting to pursue chemo, even if doctors know it will help or even with a chance of cure.

Another woman with a schizophrenic break, was a suicide risk and was committed against her will into a psych unit. Yep, pretty standard.

I'm probably sounding too critical. It is a very well written book, I just think it is my career in palliative medicine that skews the "wow" factor.

Probably the most interesting story I found was about an inmate who had been convicted of murder (that of a woman and her child), who was admitted from prison in need of a heart transplant. I did find myself wondering what the outcome would be, as different states have actually taken different approaches to this exact scenario. California has transplanted an inmate to the tune of an estimated cost of 2 million to the state, while as Arkansas denied a transplant to a inmate, who then died of liver failure. You'll have to read the book to see what Munson suggested at an emergency ethics meeting regarding this case.

This review would not be complete without mentioning the narrative I had the most trouble with. The story was of a man with throat cancer, who had communicated with family and friends that he wouldn't want to be kept alive if his quality of life was not an acceptable one. Things progressed, he had a final surgery which removed most of his tongue and half of his face (both upper and lower parts of his jaw) and was on life support after surgery. He was dying anyway of cancer, and his wife stepped up to advocate his wishes.

What happened next is what troubled me. In this situation I would expect a palliative care consult, a review with medical staff and nurses for a planned extubation with family at bedside for the switch to comfort measures. Instead something clandestine occurred. We aren't quite sure, but the doctor was in the room alone, and then comes out saying his bleeding had worsened, blood pressure dropped and he died. WHAT? The implications was that this doctor actually did something to hasten death. Even more alarming were these last sentences in this chapter;

"Patients are given large doses of morphine to reduce their pain. The drug also slows respiration, so an amount effective in controlling pain can, in a weakened patient, hasten death"

I nearly jumped from my chair. Morphine used as an amount to effectively control pain does not hasten death! When will such fallacies quit embedding themselves into literature and the media. I expect such things from a non-medical author, but clearly Ronald Munson,while not a clinician, is experienced in the medical world.

Perhaps these were stories from the edges of medicine, but I'd almost guess that like the galaxy expanding, the edges he knew are now just generally accepted principles. It is the new edges we deal with now that I hope to someday see in print.

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In 2005, Dana and Hart Perry's 15 year old son, Evan, committed suicide after a 10 year struggle with bipolar disorder. As the Perry's are both filmmakers, Evan's entire life (literally from before birth to his funeral) had already been recorded. They added interviews with family, friends, teachers and clinicians and made the documentary Boy Interrupted. It was an official selection of the 2009 Sundance Film Festival and premiered on HBO August 3rd. (It can now be seen at HBO On Demand for those interested.)

At age 5, Evan began talking about death. He was described as having an obsession with death and often talked about killing himself and others. He was first diagnosed with depression and started on Prozac. In the documentary, his teachers describe his behaviors. They describe him as an intelligent and creative boy. He wrote plays about death and journaled about his feelings. Below are two of the poems found in Evan's journal, written around age 8.

Sometimes I feel like
an owl in the day.
Just let me say
I want to end my life
with this knife.
But this is only sometimes
But this is only sometimes

Sometimes I feel alone
And no one cares for me
Sometimes I feel that
I'm in the darkness
And nobody can see me

At age 10, Evan nearly jumped off the roof of his elementary school, in an attempt to commit suicide. At that time he was admitted to a psychiatric facility and diagnosed with bipolar disorder. After being started on lithium and living away from home at Wellspring, a school/group home, Evan improved and for several years did very well.

Meanwhile, the documentary tells the story of Scott Perry (Hart Perry's brother) who also had issues with depression and committed suicide at age 21. They interview his fiance and mother (who discovered his body but does not at all recall what happened that day). Added in are interviews that Hart Perry did in 1971 (when he made a documentary on the making of the sculpture that was placed on Scott's grave). The documentary makes a point to show the parallels between the two suicides through showing similar comments made then and now. The interviews (those in the 1970s and the current ones) actually take place in front of the same painting.

After his lithium was tapered down in an attempt to come off of it, Evan jumped from his bedroom window, killing himself. His funeral is included in the documentary.

Some reviews have called this film heartbreaking. It's definitely very emotional and quite disturbing. It's an excellent film but wasn't an easy watch. (Childhood mental illness, suicide, grief stricken family and friends. Need I say more?)

At the beginning of the film, you see Evan's family cutting down a tree and turning it into beams of wood. You don't find out until the end that these beams go into making a barn at Wellspring (the facility that his parents credit for keeping Evan alive for years). I think it is interesting how the tree is used the documentary. It's cut down and cut apart at the beginning of the film and we don't really understand why. At the end, the destruction is turned into something. Like a heart breaking experience turned into a documentary. It ties the film together.

Below is a scene from the beginning of Boy Interrupted.

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There aren't too many people that have a disease referred to by their own name. However, such is the case of the all star baseball player Ludwig Heinrich Gehrig, or Lou Gehrig. Born in 1903, Lou played for the New York Yankees until being diagnosed with amyotrophic lateral sclerosis at the age of 36.

This post though isn't about him or his disease as much as it is about the idea of hope.

There's an intriguing post up on ESPN entitled "Sincerely, Lou" which documents correspondence between Lou, his wife, and physician during his 2 year battle and ultimate death from ALS. The site has both a short video summarizing the letters as well as copies of some of those letters for readers to peruse.

Reading through all the letters myself I was struck most of all by the concept of hope.

This is evident in several ways. One way to search for hope is to look for survivors. Lou does this in his letters, telling his doctor about people he encounters with either presumed ALS or other similar muscular neuropathies that have been cured. Like little ornaments of hope, these names continue to crop up during his correspondences.

Another way people search for hope is in cures themselves. I wanted to laugh and yet felt a strange pity reading through all of the types of cures that Lou tried. He took everything from high dose vitamin E and B, to histamine injections, drinking raw vegetable juice, apple seed oil, heat treatments, etc. With each new possibility he'd write to his doctor asking advice, sometimes trying them and other times passing them up. Almost every letter included some talk of proposed treatment and new research.

Probably the most startling display of hope comes from the direct questions, pleas and responses between the 3 parties. I have included excerpts from the letters, which were made available to ESPN through the Rip Van Winkle Foundation.

Here is a brief correspondence early on in the course. Lou had written asking prognosis questions to Dr. Paul O'Leary. After briefly discussing the likelihood of improvement Dr. O'Leary writes, "there is no need of my filling you with a lot of bunk about time factor...they are those things that cannot be determined on a numerical basis because they vary in each case." (Dec 8 1839) To which Lou replies, "Thanks for that swell and most encouraging letter. Up until now, I was under the impression that every inch of ground lost could never be regained, but...having it confirmed by you...I will be well on the road to recovery very shortly"(Dec 19 1939)

However as decline occurs he reaches out again for the truth. Lou writes,"Please don't judge me a cry baby, or believe me to be losing my guts, but as always I would like to know the actual truths and not to continue to receive encouraging reports which have little or no chance of materializing, or to continue to live in false hopes...PLEASE reveal to me the honest opinions."(March 31 1940)

The doctor's reply, "half of the patients with this disease derive definite relief from it...I think you must keep plugging along... you must realize that there will be days when you do not seem so good, but I am sure that such days will become of shorter duration and further apart."(April 8 1940)

Ironically the doctor sent that letter before receiving the following from Lou's wife Eleanor. She pleads, "I believe we should keep him on the optimistic side by hinting about other cases on record which have become practically bedridden, and then gradually improved because of some mysterious working of nature....it must be very difficult for you to answer his last letter to you, and I feel we must all lie like mad. I want him to keep a thread of hope; there is no point in adding mental torture to the horrible experience he is now going through."(April 9 1940 ) (Emphasis mine)

Dr O'Leary privately responds to Eleanor,"I have always disliked to tell falsehoods, but I feel that with Lou we must keep his morale up, not only for the benefit and help it may be to him, but also in order to save him the shock that accompanies such discussions" And yet the real truth, "Our frank cases of AML here have not done well. "(April 16 1940)

How often do we hear this excuse for hiding prognosis, that the truth's shock would actually hasten the disease process!

This final exchange shows that even as Lou reaches out again for truth, a conspiracy of sorts between his wife and physician continues to prevail. From the context of the letters we know that Lou has even begun to choke on his food during this time. Lou seems to sense reality and asks, "one cannot help but wonder how much further this thing can go and I wish you would again drop a note to you thoughts and percentage of making a proportional recovery"(Jan 13th 1941.)

On the same day Eleanor separately writes, "I think he asked you again his chances of partial recovery in his letter..have him sold on the idea that he has a fifty fifty chance for partial recovery...I want him to always have this hope...so I would appreciate your falling in line with me and together I am sure we can keep him from mental torture"(Jan 13th 1941)

The doctor evidently goes along with Eleanor's request and responds, "I cannot do other than remind you of the fact that other patients have gotten down to the point where they have been in bed...before started to note a favorable swing upward. The probabilities are that you belong in this same group."
(Jan 17th 1941)

What an tremendous example of hiding truth in the name of hope.

Lou Gehrig died June 2, 1941, possibly still believing in that 50/50 chance of recovery.

Special thanks to Pallimed reader Susan Lysaght for alerting me to this story!

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When I posted on Eulogy, someone commented that it seemed a lot like this movie, Death at a Funeral. I decided to check it out.

Death at a Funeral is a dark comedy that came out in 2007. Like Eulogy, the movie surrounds the death of a family patriarch and the secrets that come out in the aftermath. The entire movie takes place the day of the funeral.

The film focuses on a few of the family members. The deceased's son, Daniel is always playing second to his famous brother, Robert. He is trying to get away by moving himself and his wife out of the family home. He is to deliver the eulogy, but everyone really wants to hear from Robert.

A niece Martha with her fiancee Simon are planning on using the funeral to make a good impression on Martha's father before they announce their engagement.

Things start to go haywire when Simon takes a pill thought to be Valium but which is actually a designer hallucinogenic drug. Then a mysterious little person (I think this is correct term) shows up with a secret about the deceased and attempts to black mail his sons. I won't ruin the end but the trailer below gives some away.

Like Euology, this film also has a similar, dramatic eulogy scene at end, and the message of the two is also similar. He wasn't perfect, but he was still a good man who loved his family and did the best he could. Below is the eulogy.

"My father was an exceptional man! He may not have been a perfect man, but he was a good man, and he loved us. All I wanted to do today was to give him a dignified send-off. Is that really so much to ask? So, maybe, maybe he had some things he liked to do. Life isn't simple, it's complicated. We're all just thrown in here together, in a world full of chaos and confusion, a world full of questions and no answers, death always lingering around the corner, and we do our best. We can't only do our best, and my dad did his best. He always tried to tell me that you have to go for what you want in life because you never know how long you're going to be here. And whether you succeed or you fail, the most important thing is to have tried. And apparently no one will guide you in the right direction, in the end you have to learn for yourself. You have to grow up yourself. So when you all leave here today, I would like you to remember my father for who he really was: a decent, loving man. If only we could be as giving and generous and as understanding as my father was. Then the world would be a far better place."