Monday, December 28, 2009

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.

Monday, December 28, 2009 by Amber Wollesen, MD · 0

Monday, December 21, 2009

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.

Monday, December 21, 2009 by Amy Clarkson · 2

Monday, December 14, 2009

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.

Monday, December 14, 2009 by Amber Wollesen, MD · 2

Monday, December 7, 2009

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.

Monday, December 7, 2009 by Amy Clarkson · 2

Monday, November 30, 2009

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.

Monday, November 30, 2009 by Amber Wollesen, MD · 5

Tuesday, November 24, 2009

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!

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 This post was written by Alexandra Drane and the Engage With Grace team. )

Tuesday, November 24, 2009 by Christian Sinclair · 0

Monday, November 23, 2009

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:
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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Monday, November 23, 2009 by Christian Sinclair · 5

Monday, November 16, 2009

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"

Monday, November 16, 2009 by Amy Clarkson · 4

Monday, November 9, 2009

Try Not To Breathe

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'.

Monday, November 9, 2009 by Amber Wollesen, MD · 1

Wednesday, November 4, 2009

Palliative Care Grand Rounds 1.10

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'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 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.

Wednesday, November 4, 2009 by Christian Sinclair · 11

Monday, November 2, 2009

Kris Kulski

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.

Monday, November 2, 2009 by Amy Clarkson · 0

Monday, October 26, 2009

In the Bedroom

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."

Monday, October 26, 2009 by Amber Wollesen, MD · 0

Monday, October 19, 2009


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.

Monday, October 19, 2009 by Amy Clarkson · 2

Monday, October 12, 2009

The Woman in the Room

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.

Monday, October 12, 2009 by Amber Wollesen, MD · 3

Monday, October 5, 2009

Dying in the Opera

I saw my first Opera, Puccini's "Madame Butterfly", at the age of 9. Instantly mesmerized by the music, I was a bit shocked that Butterfly dies in the final scene. Where was the happy ending I was used to in Hollywood films?

Unbeknownst to me at the time, tragedy and death are common in opera. In fact, some would say that opera as an art form is obsessed with death, and has been since its inception. The first known operatic works of "Euridice" (1600) and "L'Orfeo"(1607) both have tragic deaths, with Euridice stepping on a venomous snake and dying, and Orfeo searching for his beloved in Hades, finding her and then having her vanish from his sight for eternity.

Many feel that part of the obsession has to do with the cultural beliefs surrounding death in the 18th and 19th centuries, when most operas we enjoy today, were written. It was in the 18th century that death began to be viewed not as a natural fate, but traumatic rupture. This morbid fascination with death became a part of the romanticism of the 19th century. It is no surprise then that this time frame produced such death themed classics as Carmen, La Traviata, Rigoletto, Aida, Tosca, La Bohème, Madama Butterfly, and The Tales of Hoffmann.

To our death defying culture, it seems strange that not only are operas packed with people dying, but the deaths don't hold the same negativeness or sadness that we're used to. The deaths portrayed seem more about redemption, reunion, and transcendence. This romanticized view of dying becomes a thing of beauty, in line with the Greek belief of kalos thanatos (beautiful death).
These beautiful deaths, however, are not just a form of art, composers such as
Richard Wagner tried to live it. He wrote to a friend:

"We must learn to die, and to die in the fullest sense of the word. The fear of the end is the source of all lovelessness; and the fear is generated only when love begins to wane. How came it that...all that mankind did, ordered, and established, was conceived only in fear of the end!"

As byproduct of the death centered operas we get to enjoy haunting aria's given to the heroes or heroines, often contemplating death or mourning a life lost. Perhaps one of the most famous is the final aria from
Aida, "O Terra Addio"

In this opera by Giuseepe Verdi, the heroine Aida is an Ethiopian princess who falls in love with her enemy Prince Radames. As punishment Radames is sentenced to be buried alive unless he denounces his love for Aida. He refuses and in the final scene we find that Aida has snuck into the tomb to be buried alive with him. They sing together "O Terra Addio" the lyrics below:

Farewell earth, farewell valleys of tears. Dreams of joy that vanish in grief. Heavens open to us, wandering souls who fly to the rays of eternal day.

You can see this song on Youtube as sung by Placido Domingo and Aprlie Millo at the end of this post. Visit the main pallimed arts site if the link doesn't appear.

The prevalence of dying in opera is so common, that now when I attend the opera I glance at the synopsis not wondering if their will be death, but how much and in what dramatic fashion.

Monday, October 5, 2009 by Amy Clarkson · 1

Monday, September 28, 2009

"That's Not My Name" by The Ting Tings

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)

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
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
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?

ResearchBlogging.orgWilliams 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

Monday, September 28, 2009 by Christian Sinclair · 0

Monday, September 21, 2009

Gallery: "Restless"

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.

This first piece is a collage, Copyright 2008 Catherine King, entitled "Restless II". What I like about this piece is the subject matter of hands. So often in terminal restlessness it is the hands that are reaching and picking and pulling off sheets.

On that note of pulling off sheets, take a look at this next painting by Doug Strickland entitled "Restless". What a great visual of the way sheets look after someone with restlessness has tried in vane to rest.

In the digital art/photography world is this piece by Luis Iga entitled "Restless". There is a face and some hands, but also the distinct impression of movement and disorientation. The distortion present again reminds me of that confusion and even hallucinations that accompany terminal delirium.

I will always try to find a sculpture as a part of these themed gallery posts. I did come across a sculptor by the name Lubomir Tomaszewski. His work often is inspired by nature and he even will incorporate rock and wood. I found this one labeled "Restless Spirit" which certainly depicts the movement associated with being restless.

It is always difficult to express a subjective experience visually.
Although all these works are entitled "Restless" adding in the idea of terminal restlessness would add another layer to the the visual experience. I couldn't, however, find any art work with the title "Terminal Restlessness"...perhaps one of our readers could be the first!

Monday, September 21, 2009 by Amy Clarkson · 2