Ted Kennedy Wanted a Good Death

A great NY Times piece about the way Ted Kennedy handled planning for his death—from his cancer treatment, to getting his advance directives in order, to spending his last nights eating ice cream and watching James Bond movies with his wife Vicki. 

I'm happy Kennedy had the time and the foresight to plan his last days like this, and I hope others will think a little about doing the same when their time comes when they read this story. 

Death Etiquette

Is there such a thing as death etiquette? If not, there certainly should be. Too many of us just have no clue what to say when someone is ill or has a recently deceased family member. 

A mortality-related etiquette question from this week's Social Q's column in the New York Times.  

"Did He Just Say That?

My mom was found to have stage III ovarian cancer. We’ve been moved by the many notes of support we’ve received. But one comment caught us off guard: Not long after my mother finished chemotherapy, the husband of an old friend asked, “What’s it like being so close to death?” What should we have said?

Anonymous, New York

Make that three sure bets in this world (to go with death and taxes). Sometime or another, we all say the worst thing at the worst moment.

I hope your mother wasn’t too upset.

Depending on the closeness of the gathering, and your mother’s mood that night, she (or you, if she was too dumbstruck) could have shared some of her feelings or replied that she was focusing on happier prospects. She might even have made the ultimate point: Cancer may have put a finer point on her mortality, but that doesn’t mean that you, I or Mr. Foot-in-Mouth know any better when ours will strike."

Michael Jackson Cupcake

I was just in Austin, Texas, and of course found my way to the local cupcake shop, Hey Cupcake. One of Hey Cupcake's specialties is the Michael Jackson cupcake. They have had this item on their menu for years. What is it? A chocolate cupcake with cream cheese frosting. Get it? It's both black and white, playing on Michael Jackson's confused racial complexion. 

After his recent passing, Hey Cupcake was apparently worried that they might need to take the item off of their menu out of respect for Jackson. But surprisingly to them, sales went through the roof. People were buying the cupcake out of tribute to Jackson. Even though it was a joke item, patrons see it as a way to recognize him instead of being tacky. 

No dogmas allowed

Sort of corny but pretty sweet, too. A dog chapel in Vermont, made both for dog owners to grieve the loss of their beloved canine friends and for all of us humans to be able to bring our dogs along with us into the chapel. The chapel was actually inspired by the near-death experience of artist Stephen Huneck. 

I love, love, love that visitors can post remembrances of dogs who have passed away on the walls of the chapel. It must be so comforting both to share your memory and read the memories of other dog lovers. 

And how clever is that sign out front? No dogmas allowed :)

PCGR Volume 1, Round 5

This month's Palliative Care Grand Rounds is up at the blog of Angela Morrow.

PCGR is a survey of sorts of what's been happening in the blogosphere regarding death, dying, end-of-life issues, etc. Hopefully, once it's been going on long enough, we'll all start to get the sense that us palliative-care focused bloggers and blog-readers are part of some type of community. In fact, I can see it happening already. 

Check out the entry, and check out Angela's blog. 

Previous entries of PCGR can be found here. And thanks again to Christian Sinclair for initiating the project! 

Departures

Last week, I had the absolute pleasure of watching the film Departures at the Seattle International Film Festival.

Departures won this year's Academy Award for best foreign film. From Japan, the film tells the story of Masahiro, a young cellist with a Tokyo-based orchestra. When the orchestra is dissolved, he reluctantly gives up his dream of being a professional musician and returns to the small town in which he was raised. There, he stumbles into a job ceremonial preparing dead bodies for funerals. Masahiro finds he has a gift for the work and that he takes a comfort in being able to guide people peacefully and properly through their most difficult times. 

The film is at times hysterical, at times gut-wrenching, but it is always full of so much life and love and beauty. The set-up allows for several scenes in which we are given a window into people's lives at their darkest hours. And the director reminds us that some of us handle grief and sorrow by sinking to our lowest behavior, some of us handle it by rising to our best, and a rare special few among us, like Masahiro, are able to take those who are lost and aimless in the midst of grief and bring them back to themselves. 

I can't recommend this film enough. Even though its subject is death, it is as full of life as any film I have seen. It's a prime example of the strange dichotomy that sometimes the greatest beauty lies in the darkest corners of our existence. 

Lost Season Finale Tonight

No spoilers here, but I am speculating about what might happen, so if you don't want to read that, you should pass on this entry. 

All of you Lost fans out there know it is a complicated show with an active online community. The producers of the show will frequently throw in little details, inside jokes, non-cannon elements, that only the hardcore—you could say obsessive—fans will pick up on. (No dig intended here; I'm one of those obsessive fans.) It's not necessary to understanding the show, so if you don't pick up on it, it doesn't hurt your understanding of the show one bit. But it's fun if you catch it. 

One of these jokes is related to the "red shirts" phenomenon. This joke dates back to the original Star Trek series. The show, infamously, only had one extra costume for actors to wear when the crew went out on planetary expeditions. So, it would be Spock, Dr. McCoy, Captain Kirk, and some random dude in a red shirt. When bad things went down and someone died, guess who it was? The guy in the red shirt. 

So, producers of Lost will often put the extra who is going to die in a red shirt. Here's the story of one such unfortunate soul. 

In a big finale of a show that is definitely not afraid to kill off major characters, viewers are no doubt wondering whether someone will be killed. 

Well, several episodes ago, the character Juliette had a wardrobe change, and she's now wearing a red shirt. 

It makes me wonder. 

Dying Alone

Thanks to Gail for pointing me toward this story.

A woman in South Carolina passed away and was not discovered for 18 months. The woman is described as a lonely widow who had lost contact with most of the people in her life. 

Her dog died of thirst in the same room as her, and even when her home was sold for back taxes, it seems no one visited the property and found her body. 

It's terribly sad. I keep trying to think about whether good end-of-life care would have helped her avoid this situation. 

But, if you live your life alone, how do you avoid dying alone? 

Swine Flu Stigma?

So, this is interesting. Over the weekend, Washington state had its first death attributed to swine flu, and the family of the deceased is arguing with the official cause of death. 

It seems they are worried about a possible stigma attached to the man having died of swine flu. The family is pointing out that he was 5'6" and over 400 pounds and had many health problems. But after autopsy, health officials insist his death was caused by complications from the flu. 

The family's claims through me off a bit. I can see there being a stigma attached to having swine flu. It's being treated as a particularly virulent virus and people want to avoid it, so no one wants to be exposed. But is there a stigma to having died of it? 

Other diseases that carry or have carried stigmas in the past, let's say AIDS, it seems to me, it was because there was controversy surrounding the activities that could have led people to contract the disease. With AIDS, people are not always comfortable with homosexuality, sometimes drug users can contract it, sexually promiscuous people or people who don't use protection may be at greater risk. But the flu, even the swine flu, is just an airborne illness. 

Am I missing something? I don't see the stigma.  

Cryonics

This week's episode of This American Life tells the story of a cryonics advocate, Bob, and his attempts to help himself and others cheat death. But the technology isn't quite there to reanimate the deceased, Bob's storage facilities are subpar, and funding proves to be a problem. 

The ugliness of the situation snowballs into a complete nightmare and a predictable legal battle. 

When you listen to the story, if you think Bob's ethics are a little shaky at the beginning, just wait until you hear some of the stuff he's saying at the end of the piece. 

For me, this tale is the ultimate in death avoidance. From beginning to end, everyone involved with Bob and his brand of cryonics shows an amazing inability to accept death. They all seem to think the frozen bodies in Bob's cryogenic chambers are in some sort of half-dead state, and it's as though, they don't really have to let go of their loved ones, or accept their own impending deaths, if they have cryonics to fall back on. 

As always with This American Life, it's a fascinating tale, and it's full of lots of murky ethical issues. 

NFL Player Stopped for Traffic Infraction on Way to See Dying Mother-in-Law

You must watch this video. 



The player, Ryan Moats is trying to get himself, his wife, and another family member to the hospital in time to see his mother-in-law before she dies. Clearly, he is not concerned with having run stop signs and red lights; he has bigger issues on his mind. 

Now, I understand he has broken traffic laws, and the officer has a right to question him about it, but what reasonable human being wouldn't understand the gravity of the situation? How could he not have waited for Moats to visit his mother-in-law before he wrote the ticket?

I think it's pretty clear from the video that Moats does not care one iota about his offenses. The only compliance he is offering is to get the officer off his back. 

And a couple of things are particularly shocking about the officer's behavior to me:

1) he pulls his gun right when he leaves the car

2) he tells Moats that his attitude sucks. I'm sorry officer, whose attitude sucks? 

I'm just glad the wife and the other family member were badass enough to ignore the officer and walk into the hospital despite his orders. 

Palliative Care Grand Rounds, Volume One, Issue Three ...

... will be hosted right here, on Wednesday April 1.

If you have tips or ideas for things for me to add—stories, radio programs, articles, blog entries, whatever—on death, dying, end-of-life care, palliative care, anything like that, please forward them along.

You can email them to me at jessica.knapp@gmail.com. Or just drop them into the comments section of any blog entry for this month, and I'll probably get the message that way, too.

And don't forget to check out Palliative Care Grand Rounds, Volume One, Issue Two, currently up at dethmama's blog!

Cherry Blossoms

I was looking through my archives, and I don't think I ever posted about this film. 

So ... I'm a bit of a sentimental sap, but I cry watching this trailer. 

It's playing in Seattle for just a week, and I'm going to be out of town for six of those days. I'm hoping I can figure out how to get there that last day. 

I love the conflicting views of what makes a satisfying life—the hedonistic husband who is happy with his daily pleasure of having a loving relationship with his wife versus the epicurean wife who wants to have the big, grand adventure of seeing Mt. Fuji. The music. The acting. You expect the husband to be the one to go, and then it's the wife. That moment when he's on the bed, and he has laid her clothes out next to him. And then he packs up her clothes so he can take "her" to Mt. Fuji with him finally. 

Just beautiful ...

Practical Advice on Handling Death

As I've said many times before, Diane Rehm is my favorite, favorite radio host.

On Monday of this week, she interviewed NY Times columnist Jane Brody who has a new book called Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life.

Self-aggrandizing, super-wordy titled aside, it sounds like a very practical, down-to-earth write-up of some of the small details many of us are not prepared to deal with. She focuses on both what the dying person and the loved ones of the dying person should do. Things like a living will, of course, but also assigning a health-care proxy, someone to advocate for you and your wishes.

She also advocates bringing death back into the regular conversation of life and not separating it out into something that strictly happens in a hospital, removed from everything else. And you all know I'm in favor of that.

Here's a link to the interview. Here's a link to the book.

Another great link from Christian Sinclair. I love this video for its simple honesty. It reminds me of this article from Scientific American that talked about consciousness after death.

Many of us ponder death in a way that assumes we will have thoughts and sensations after it happens, but when it comes, both the article and the video say, we will simply stop, and we will not have consciousness to be aware that we have stopped. Therefore, there is no reason to fear our end.

In his post on the video, Sinclair compares its tone to that of a children's book. I could not have said it better myself. There is a simple, instructive narrative. A heartwarming feel, despite the hard subject. The narrator sounds like he wants to take care of us. To walk us gently through this harsh truth.

Give it a watch. I'm curious to know what other people think. Also, nothing really happens until the 40-second mark, so if you're a techy-generation, impatient sort, you'll want to zoom ahead.

Heath Ledger Nominated for Golden Globe

Batman: The Dark Knight, which made huge sales at the box office, is once again making huge sales in DVD. And today, Heath Ledger has been nominated for a posthumous Golden Globe award for his portrayal of the Joker.

Ledger gave a tremendous performance as Joker. It was externally loud and outward, but at the same time, he portrayed a character with an intense, seething inner life. He showed a man whose psyche was rotting away to such a degree that he had lost all sense of right/wrong and societal norms. Yes, it was a comic book character, but you bought how this being could have been born out of a real-life scenario.

Now, I do have to admit, there is extra value added because it's the last great role Heath Ledger will ever put down on screen. The finality of it all is enticing. I think he might have one more film left in post-production? But for the most part, Ledger's work is over, and that casts a haunting resonance this piece. How do we separate that from evaluating the work?

I don't think we can. And maybe it shouldn't matter.

As I said when he died and people were flocking to see the film in the theaters, there's a sense of public grieving that comes from appreciating this role. And I'm a huge fan of public grieving. It's cathartic and healing and doesn't happen often enough. There's no doubt it's a quality performance, and I don't see anything wrong with Ledger getting every possible recognition for his performance as Joker, even if part of the reason is the fact of his death.

The Mom and Me Journals dot Net

The Mom and Me Journals dot Net is a blog dedicated to one woman's adventures as a companion to her mother, who happens to have dementia and lung cancer.

The blog is honest and informative about the dying process—not to mention about the mother-daughter relationship. It's a site we all could learn from.

The author's mother just passed away, and the most recent entry is about the death.

I highly recommend the site, and the post.

A Sacrifice to the American Religion of Shopping

Poet Andrei Codrescu offered this commentary on NPR's All Things Considered last night about the death of a Wal-Mart employee who was stampeded by a crowd of shoppers, anxious to get into the store for super savings on Black Friday.

I'm a pretty analytical girl ... which makes me so glad for people like Codrescu, who have poetic minds. Codrescu calls the death a sacrifice to the American religion of shopping.

"And so we went shopping! We so went shopping, in rumbling herdlike elephant masses, we killed a guy who didn't get out of the way fast enough. It's a tragic incident, but by no means meaningless. Shopping is a religion, and some religions demand sacrifices.

The Wal-Mart employee died for us on Black Friday, but have we stopped to think what his sacrifice means? Not at all: We're stampeding right on through to the other side of Christmas. We aren't just shopping: We are saving America."

I'm sure a lot of the more thoughtful of us already have done this, but maybe we should all stop for a minute and think about what his death means.

Engage with Grace

The following post is part of a project put on by The Health Care Blog and Running a Hospital. They are asking folks to download a slide with five questions about end-of-life care ... and then share those questions with family, coworkers, friends, anyone with whom they feel comfortable starting a conversation about death.

You'll see as you read the post, it's right in line with the themes of this blog. Please let me know if you participate. And I'll be sure to report back if I do. Thanks!

"We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get
people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to
share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

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

13-year-old girl refuses life-sustaining treatment

This post from Britannica Blogs offers commentary on the case of a 13-year-old British girl who refused a surgery that would save her life. Administrators at the hospital eventually abandoned legal action that would force the girl to undergo surgery and allowed her to die, thereby granting her wishes and allowing her to die.

Is 13 old enough to make the decision to give up on treatment and die?

Should the hospital have forced treatment on her?

The blog does not mention her parents, but I did some more research, and it looks like she has both a mother and a father actively involved with her life. I can't find information on exactly where they stand, but they must support her ability to make her own decision because there is nothing about their attempts to interfere, and one article claims the local hospital accused the parents of trying to prevent their daughter's treatment.

It's a gut-wrenching reminder of how complicated and murky medical-ethics issues can be.