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The Alzheimer's Project is an HBO documentary series that debuted in 2009. It consists of 4 documentaries that look at the science of the disease and those affected by the disease, the people with the disease, their caregivers and children. There is also a supplementary series of short videos.

What really caught my attention in this three year old series was the documentary entitled "Grandpa, do you know who I am?" It was narrated by Maria Shriver whose father, Sargent Shriver, suffered from Alzheimer's. (He died in 2011.) This video was geared toward children dealing with grandparents with Alzheimer's.

They followed several different children in different circumstances. One family of children was having an open conversation with their grandfather with early Alzheimer's about what was happening to him and how he was dealing with it. One girl was helping to care for her grandmother in her home and another had a grandmother in a nursing home.

The very emotional part of the video was when they discussed some of the behavioral changes in their grandparents. One child described her nursing home bound grandmother slapping her for no apparent reason. In another scene, a grandmother yells at her granddaughter to leave when she tries to read to her.

The video is mixed with messages for children dealing with similar situations, like this is the disease not really your grandparent and try to be a keeper of your grandparents memories.

This documentary series is very well done as HBO documentaries tend to be. It was made in collaboration with National Institute on Aging. What I really appreciated is that the videos are all available online here.

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The finale of the reality television show Work of Art: The Next Great Artist aired last week. This show is like a lot of reality shows. The artists are each week given a topic or project to make a work of art. Each week an artist is voted off by a panel of judges. In the finale, the three top artists spent three months creating their solo exhibitions. What I found interesting is that 2 of the 3 shows were partially or completely themed around death.

Young Sun, one of the finalists, show was entitled Bool-sa-jo and was focused around the illness and then death of his father. Written on the exhibit was a conversation between Sun and his mother.

"My sweet bool-sa-jo," she called him. Mom stroked Dad's cheek.
"What does that word mean?" I asked.
"Phoenix," she replied. "He's survived so many operations, strokes, chemo.
He keeps living. That's why I call him that. I think he'll live longer than me!"
Finding a balance between closure and remembrance isn't easy.
Bool-sa-jo at once an epilogue and a tribute to the process of loss and healing amongst family"

Kymia Nawabi, the winner of the finale, had an exhibit entitled Not For Long, My Forlorn. Her work focused around life cycles, including death and life after death. Below is a poem at her exhibit and then a video of Kymia talking about her work.

All in that body
Allin your spirit and soul
What of it next?
More glimmer of gold

Look to the Ouroboros
Its beginnings and ends
Sacred scared warrior
Shed your skin again

Onward and all ways
You fight for the grave
Have great faith in yourself
Cosmic paths are paved

So, no for long my forlorn
For the fight in this life is brief
They sheathe each end
With your spirit, never to sleep



The exhibits can be seen on the shows website here.

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Breaking Bad is an AMC television show that I recently discovered. It is starting it's fourth season this summer, so it's not a new series. But after I watched most of the first season, I knew it had to be a post.

Walter White is an over qualified chemistry teacher with a 15 year old son with cerebral palsy and a wife who is 7 months pregnant. He discovers that he has terminal lung cancer. Knowing his time is likely short (I think 18 months is what was mentioned in the show). He sets out to make money to pay for expensive treatments to support his family after his death. He does this by joining with a former student, putting his chemistry knowledge to use, to make meth.

Overall the show is a drama with a lot of drug dealing and violence. Walter turns out not to be the mild mannered chemistry teacher type. But I found the cancer angle to be very interesting. There are some very interesting palliative care type scenes. Early on in the show (Season 1) Walter was refusing to talk about treatment. His family had an intervention to discuss his choices with him.

I wasn't able to find the exact clip of his intervention but below is a "Minisode" (essentially the highlights of season 1 episode 5). The scene starts at 3:18. It isn't the complete scene but hits most of the key points. Marie is Walter's sister-in-law (who is actually a doctor) and Hank is her husband (who is a DEA agent, the plot thickens). Please forgive the brief advertisement.



Here is a clip of series creator Vince Gilligan talking about how emotional this particular scene was to make.




I love the talking pillow. Hmm, may use that in a family meeting. I really like the speech Walter gives at the end. Choosing to do nothing is itself a choice and was actually a much more thought out one than his family anticipated. While I wouldn't really call this series completely palliative care, it is an excellent drama with excellent acting.

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I recently saw the pilot for a new Showtime series, The Big C, which premiered in August. Cathy Jamison is a middle aged school teacher with a new diagnosis of advanced melanoma. She could do chemo but she feels it would only be buying her little time and everyone would be taking care of her. She sets out to make the most of her last year, in her own way.

She kicks out her imature husband and sets out to be the more spontaneous, liberated one herself. She essentially begins to build herself her a to do list in this first episode. She begins to have a pool installed so she can swim with her son as she did when she was young and she begins to reign in her unruly teenage son. She starts to help an overweight teenager quit smoking and lose weight. She pours wine on her couch, something she sees as a symbol of how uptight she was in the past, and plans to burn it in the yard.

Several times during the pilot she tries to tell her family about her diagnosis. Each time she changes her mind at the last minute. At the very end of the episode she tells her neighbor's dog.

One of my favorite scenes in the show is when Cathy goes out to eat lunch with her young doctor. She wants to know how it feels for him to deliver bad news and he divulges that she is the first person he has ever had to tell such news. He nervously asks how he did.

"Very professional and matter of fact but detailed. You dumbed it down enough to be clear but not insulting. And underneath it all you seemed sad and I appreciated that. But after you left the room I heard you joking with the nurse about putting the doughnuts too close to the urine samples and is that what your supposed to wash it down with... it made me doubt your sincerity."

End of life issues aside, I found the pilot to be entertaining. I have always liked Laura Linney (who plays Cathy) and I think she does an excellent job of balancing funny and serious, more on the funny side. I'm looking forward to watching more of this series.

There is an excellent article on the series in Obit Magazine written from the point of view of someone who has been diagnosed with cancer. Trailer below.

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Penn & Teller: B.S! is a Showtime documentary series. Magicians/comedians Penn and Teller set out, in a comedic way, to debunk various paranormal and pseudoscientific beliefs and common myths. Some of their topics have been ESP, astrology, lie detectors, and organic food. One of the most recent episodes, "Old People", takes on various myths and stereotypes faced by the elderly. It isn't meant to offend (something the show definitely doesn't mind doing), but rather point out how disrespectful American culture is of the elderly.

Myth: There is an "old person smell". They set up an experiment with 3 old and 3 young people and had blindfolded volunteers smell them. The smellers had to determine if the smellee was old or young. They were accurate only 56% of the time. Very scientific evidence against the "old person smell".

Myth: Older people can't drive (or drive poorly or slowly). They featured a 70 year old race car driver. They also pointed out that those in the age group 16-24 are more likely to cause a fatal accidental.

Myth: The elderly don't have sex. They interviewed several members of a retirement community about their active sex lives.

But in the end the show takes a serious turn. The last section deals with a controversial end of life issue, physician assisted suicide, or as they call it aid in dying (pointedly to take the word suicide out of the name). They interviewed a gentleman, Sheldon, with mesothelioma, who wants to be able to end his life when things become intolerable. Despite the fact that Penn and Teller clearly are in favor of aid in dying, they do give some screen time to a doctor who disagrees with them. And they didn't taunt him, much. They specifically recognize that it is complex issue, not just black and white.

One of their guests sums it up nicely at the end. "For us just to sort of say, 'Old people have come and gone. Let's sweep them under the rug,' it would be a terrible mistake of ours as a culture, as human beings. I think its unfair to deny them their essential humanity just because they've lived longer than us. That's insane." I know that in a blog frequented by hospice and palliative care professionals, this is preaching to the choir. But I do think it was an interesting topic for them to take on.

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No, not the game show or video game. When I first saw the name of this HBO film, You Don't Know Jack, I thought the title seemed a bit casual for a movie about Jack Kevorkian and assisted suicide. The word flippant came to mind. What I realized as I starting watching the film was that I really don't know Jack. So, maybe an appropriate title (and probably intentionally flippant). I have heard about his work, his court case but I never really knew anything about the man. This film focuses on the years Kevorkian spent as "Dr. Death" but also gives a lot of personal insight into his life, relationships, personality. It shows him as an eccentric man who knowingly gave up his freedom for his cause.

Below is the trailer for this film which just premiered on HBO this past weekend.

Regardless of how you may feel about the topic, you can not (if this film is an accurate portrayal) argue the passion he feels for his cause. He so believed in this cause that he put his own freedom on the line with every death. The last death was not actually an assisted suicide but euthanasia. He went into this knowing it would force a court case.

He pleads a sympathetic case for his cause. The terms he uses are ones that we would be familiar with: death with dignity, quality of life, end suffering. He speaks about why must someone make the decision to have their feeding tube removed and die slowly when we could just end things quickly, humanely. Who are we as doctors to make someone go through that when we have the ability to spare them?

One statement I found interesting: "terminally ill is not a definable term". I would love to hear what everyone thinks of that.

I wondered when I started watching the film how the story would be slanted. It was clearly pro Dr. Kevorkian. I was left wishing for more balanced view of the issues. I felt those against what he had done were vilified and painted as overly religious. (I know very nonreligious people who are against assisted suicide.) I have always seen this as a very complex issue. To just get one side does not do it justice. I was left feeling a bit like the media was trying to manipulate my views rather than just trying to entertain me or even educate me. I would like to see a palliative care perspective. Is death all we have to offer?

From a film perspective, this is very well acted, starring Al Pacino (a remarkable resemblance to Dr. Kevorkian), John Goodman, Susan Sarandon. Intermixed with the main storyline are interesting personal relationships between Jack and his best friends, sister and lawyer. He struggles with the issues that brought him to embrace assisted suicide in the first place, the suffering and death of his mother.

One line in the movie describes Dr. Kevorkian as "the last doctor you'll ever need". My thought was, does that describe me too?

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March 31st marks the 5 year anniversary of the death of Terri Schiavo. The case that got so many families talking about their end of life preferences comes back into the media now in an unexpected way.

To commemorate the anniversary, Family Guy, a Fox Network animated series, aired a short spoof on the case, Terri Schiavo: The Musical. Below is the episode. (It's just the first minute or so of the episode.)



Tasteless? Insensitive to all parties concerned? Disrespectful of the deceased? You can be the judge. I guess we all have different senses of humor. Not quite historically accurate. (I pointed out to my husband how it was medically incorrect. His response was "Amber, I think they were going more for rhyming than medical accuracy.") But is it too soon? Will it always be?

Having watched Family Guy before, I think that it is clearly meant to shock. To make us say out loud "They did not just do that?". As I am sure there will be some upcoming media about this anniversary, Family Guy probably sees that all press is good press. And they have gotten press over this. Schiavo's family was understandably enraged by the episode and many different family members have been quoted stating as much, calling for Fox to drop the series.

Family Guy isn't the only animated series to take on this topic. March 30, 2005, just 12 hours before Schiavo's death, South Park aired the episode "Best Friends Forever" (This is the link is to the episode. It may be offensive to some viewers as South Park always is.), also a spoof of the controversial case. They actually won an Emmy for this episode. There is some interesting commentary on the state of modern medicine. Even if South Park isn't your taste, I recommend watching it. It actually seems to be more making a point than trying to shock the audience.

So am I offended? Not really. I likely would be if it was my family member they were talking about. It honestly makes my inner palliative care doctor cringe a bit to think of the family having to see this, regardless of what my views may be. But I have seen much more offensive material come out of both of these series. They have poked fun at about every controversial issue out there and will continue to do so. No one would even bother if these issues didn't not raise so much emotion already. Maybe it should be an honor to get this kind of attention. It means enough people care.

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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.

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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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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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ER premiered Sept 19, 1994 and was the creation of the late Michael Crichton. (Crichton wrote the screenplay for ER based on his experiences as a resident.) On Thursday, April 2nd, after a 15 year run, the series finale aired on NBC, entitled "And in the End..."

That's quite a bit of palliative content for one episode (even a 2 hour episode). Maybe someone who watches regularly could tell me if this has been the norm. I think that death is commonly dealt with on ER but what I find interesting in this episode is how it is dealt with more as a natural part of life, not always a struggle. Comfort is actually brought up in both of the last two story lines I mentioned. So, farewell ER! While I haven't been a devoted follower, I am a fan of this episode.

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I recently caught a very palliative care rerun of Scrubs that I had previously forgotten about. For those of you not familiar with this comedy, it premiered in 2001 and follows three interns and their friends through residency and now into their careers. In 2001, I was a medical student and I watched the show through my residency. It always seemed to capture some of the emotions I was dealing with at the time.

This episode entitled "My Five Stages" is about dealing with the death of a patient. In the clip below, the concept of the five stages of grief is introduced to a dying patient by a very interesting grief counselor. The episode goes on to follow the two doctors, JD and Cox, as they go through these stages themselves and come to terms about the loss of one of their favorite patients. Note the description JD gives about what it's like to die.


I have often thought Scrubs is the most realistic medical show. I never really got into any of the other medical shows because I hated all the drama. (How many bombings and shootings can one ER have anyway?) I know Scrubs is a comedy, so definitely exaggerated, but there is usually an element of truth in all of their humor. The situations and conversations may be over the top but I think it gets the emotional aspects right (always in a funny way).

Because it deals with the day to day struggle of the medical staff, there are frequent palliative care topics that come up. This scene from "My Long Goodbye" addresses the difficulty we have delivering bad news.


Another episode, "My Number One Doctor" deals with the ethical dilemma one of the doctors has when she discovers that her ALS patient had attempted suicide and was planning on trying again.

Scrubs is still coming out with new episodes but has changed networks from NBC to ABC. If you're interested you can see old reruns frequently on Comedy Central and other networks.