Five Wishes brought to Life

Gail Rae from the mom and me journals dot net has applied the Five Wishes to her mother's recent passing, wondering how each question relates to the discussions she had with her mother before her death. It's a beautiful post and a great embodiment of just how the Five Wishes framework can work.  

Palliative Care Grand Rounds

If you've been wonder what palliative-care-minded bloggers are writing about, here's your chance to find out ...

I'm a little behind on posting this, but this month's Palliative Care Grand Rounds is up at Pallimed Arts & Humanities. If you're not familiar with it, PCGR is a monthly blog entry that highlights what has been going on in cyberspace regarding end-of-life issues, palliative care, death and dying, etc. 

Next month, PCGR will be hosted by Death Club for Cuties (gotta love that name!). 

Dying to Live out on DVD

Ben Mittleman's exploration of facing his own mortality: Dying to Live, is now available on DVD. I highly recommend checking it out, if for no other reason than we can all occasionally use a reminder that we are all capable of so much more than we think. 

Filling out my Living Will

Which lines would you initial?

"If in the judgement of my physician, I am suffering with a terminal condition from which I am expected to die within six months, even with available life-sustaining treatment provided in accordance with prevailing standards of medical care:

__I request that all treatments other than those needed to keep me comfortable be discontinued or withheld and my physician allow me to die as gently as possible;

OR

__I request that I be kept alive in this terminal condition using available life-sustaining treatment (THIS SELECTION DOES NOT APPLY TO HOSPICE CARE.)"

For me, it's pretty easy here. I initialed the first option. If I knew I was terminal, I would only want comfort care. The next question gets into more gray areas for me though.

"If, in the judgment of my physician, I am suffering with an irreversible condition so that I cannot care for myself or make decisions for myself and am expected to die without life-sustaining treatment provided in accordance with prevailing standards of care:

__I request that all treatments other than those needed to keep me comfortable be discontinued or withheld and my physician allow me to die as gently as possible;

OR

__I request that I be kept alive in this irreversible condition using available life-sustaining treatment. (THIS SELECTION DOES NOT APPLY TO HOSPICE CARE.)"

I want to initial the first line, but I also really want to know what the condition would be. Doesn't everyone? I'm lucky; I have a great medical advocate as my medical power of attorney. I'm wondering how other people have worked through these topics though. 

Another Harvest Moon

I was alerted to this film in the comments section of a recent post. 

And I just have to say, it's about freakin' time someone made a movie about life in a retirement home/assisted-living facility. 

Also, it looks like the movie deals with quality-of-life issues, withholding treatment, and the right to die. I'm very curious to see it, and I hope others go to the movie and have lots of conversation afterwards. 

Five Wishes

Just found out about this website, Aging with Dignity. 

They offer a living will written in everyday language, and they call it Five Wishes—because it helps you lay out your five wishes about end-of-life care.

*Who you want to make healthcare decisions for you when you can't make them

*The kind of medical treatment you want or don't want

*How comfortable you want to be

*How you want people to treat you

*What you want your loved ones to know

If you're looking to fill out your own living will, this is a very accessible resource. Please note, it meets the legal requirements in 40 states. But, the site also has a handy little map to show which states accept this form. Link to it here. 

Update on Death with Dignity in Washington State

Just a short piece in the Seattle Times giving some stats on what has happened under the first six months of Washington state's Death with Dignity Act. 

Twenty two people have received prescriptions for life-ending drugs, and it seems 16 of them have since died. The article cites sources that claim 11 are known to have died from using the medication, as opposed to natural causes. (The state will not release information on how exactly specific people have died because of patient confidentiality laws.)

That's about all the article says, except for a couple of quotes from groups on either side. But it's only a few quick paragraphs if you want to check it out. 

Is Assisted Suicide a Constitutional Right?

That's the question Montana's State Supreme Court will take up on Wednesday. 

It stems from the case of Robert Baxter, a 76-year-old retired trucker who died of lymphocytic leukemia. Baxter, while still alive, sought the right to die, and took his battle to the Montana court system. A lower court ruled in his favor, on the very day he died. The State of Montana appealed the decision and it has now reached the state's Supreme Court. 

According to the New York Times:

"The legal foundation for both sides is a free-spirited, libertarian-tinctured State Constitution written in 1972 at the height of a privacy-rights movement that swept through this part of the West in the aftermath of the 1960s. Echoes of a righteous era are reflected in language about keeping government at bay and maintaining individual autonomy and dignity."

It seems now, not only is the right to die being advocated for from some of the more liberally minded states (Washington and Oregon), but now we're seeing a movement come out of a more conservative, individualistic state. 

And we're seeing some different arguments because of the unique nature of Montana. For one, since so many people live in near isolation, opponents worry that the sick will be pushed into the law out of a lack of access to proper healthcare. Montana also already has one of the highest suicide rates in the nation, and some worry about enacting such a law in an area that already has problems with suicide. 

On the flip side, proponents state the need for individualism and autonomy in decision making—the rights of the individual to direct his or her own fate. 

This will be interesting to watch. And if the court does approve the assisted suicide, it will be interesting to see what type of law they come up with, since this move has not stemmed from a carefully drawn out initiative, the way Washington's and Oregon's laws did. Will they essentially copy Oregon's law, like Washington state did, or will they do entirely their own thing, which seems more in the character of Montana. 

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. 

A High-Profile Bioethicist!?!

What did these parents feed their children? One is White House Chief of Staff, one inspired an HBO show about Hollywood agents, and the another has become maybe the first ever famous bioethicist. 

The insanity of all of that aside, this NY Times piece on Dr. Ezekiel J. Emanuel and his role in advising President Obama's on healthcare legislation is a great read. If for no other reason, it is yet another example of how issues that need to be carefully, reasonably discussed get spun out into crazy, maddening, thoughtless rhetoric in the political arena.  

Betsy McCaughey's Daily Show Appearance

I'm posting Jon Stewart's interview with Betsy McCaughey, former Lieutenant Governor of the State of New York who is credited with starting the myth that the current healthcare reform bill will lead to senior citizens not getting medical care. In other words, she is the mother of the hysteria about elderly people being encouraged to sign DNRs even if they don't want to, being told they have to just sit back and die instead of receiving actual care. 

And according to political gossip, McCaughey inspired Sarah Palin's controversial remark about "death panels." 

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
Betsy McCaughey Pt. 1
www.thedailyshow.com
Daily Show Full Episodes Political Humor Healthcare Protests

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
Exclusive - Betsy McCaughey Extended Interview Pt. 1
www.thedailyshow.com
Daily Show Full Episodes Political Humor Healthcare Protests

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
Exclusive - Betsy McCaughey Extended Interview Pt. 2
www.thedailyshow.com
Daily Show Full Episodes Political Humor Healthcare Protests

The interview shows how complicated this bill is, but also, how easy it is for it to be twisted to one person or another's purposes. Also, it's a great interview on Stewart's part, if you can stand watching a little confrontation. He does an excellent job of cutting through her double-speak and forcing her to point to exactly where the bill says what she is claiming it says. (Which by the way, it doesn't.) 

Apparently, McCaughey resigned her position on the board of directors of the Cantel Medical Corporation following this interview. 

But here's a silver lining: Maybe this hyperbolic, fear-mongering spin is finally backfiring, and now, people will actually start to really think about living wills and advance directives in a serious and calm manner. We can hope, right :)

Medical Futility Statues

Thaddeus Pope of Medical Futility Blog has worked on a piece that has just been published in a new book called The Many Ways We Talk About Death in Contemporary Society. 

Thaddeus' piece is titled "Medical Futility Statues: Can They Be Resuscitated?" A full table of contents is available here. 

Here's a publisher's description of the book as a whole:

"This interdisciplinary work examines the representation of death in traditional and 'new' media, explores the meaning of assassination and suicide in a post 9/11 context, and grapples with the use of legal and medical tools that affect the quest for a 'good death.' The contributors treat their interrelated topics from the perspective of their expertise in medicine, law, psychology, anthropology, sociology, political science, religion, philosophy, literature, media, and visual culture."

Congratulations Thaddeus. It looks like a fascinating read. 

Euthanasia

I wanted to share this with you all.

Hospice Physician in the comments section of last Friday's post, helped me clarify my paraphrased definition of euthanasia. 

"To address your quote below:

'when a medical practitioner directly brings about death by administering medicine to the patient'

This is true but to clarify even more, euthanasia is a deliberate act with the intention of causing death in a patient. There is an ethical principal called the "Rule of Double Effect" which states, a medical practitioner is not acting unethically by giving pain medication, for example, that may lead to death, if the intent is not to cause death but to relieve pain/shortness of breath or promote comfort."

I'm always a fan of further clarity. Thanks Hospice Physician!

Details, please

Newsweek has this piece that is supposedly debunking seven myths of the current healthcare debate. 

While debunking the myth that the House bill requires suicide counseling, this article states:

"Euthanasia, on the other hand, is legal in only three states, making it even more unlikely to be a major part of the federal health plan."

Pardon me, Newsweek, but euthanasia is not legal in any state. But death with dignity is legal in a handful of states.

The proper terminology makes a huge difference. Euthanasia in general means a mercy killing, but in practice usually refers to when a medical practitioner directly brings about death by administering medicine to the patient. Most people think of what vets do with their pets when they hear the word euthanize.

Death with dignity is a more specific phrase that refers exactly to the recently passed into law procedures in which the patient is prescribed medicine that they can take on their own to bring about their own death, on their own terms, at their own time, when they're comfortable doing so. And all along, the patient can decide not to go through with the practice. 

General euthanasia is not legal in any state. The specific act of death with dignity is legal in certain states. 

Besides which, since death with dignity is such a heated topic, and something that has the potential to make a revolutionary difference in the amount of choice and control people have over the way in which they approach death, they manner in which we speak about it is incredibly important. We need to be careful about what we're referring to and be clear about what we're talking about. I realize this was a side issue in this article, but a news magazine should be better at articulating the details. Simply calling it euthanasia is flippant, careless, and inaccurate.   

Death with Dignity Panels

So, I've gone from thinking I wouldn't post anything on the healthcare-reform debate to posting on it twice in two days. 

The Senate has removed the portion of their bill that allows Medicare to pay doctors for counseling sessions with patients regarding advance care and end-of-life planning. (Right now, it's still in the House version of the bill.) 

Just to be clear, these counseling sessions are happening already. End-of-life planning often occurs when someone becomes terminal. Patients will sit down with their team to discuss their options for resuscitation, hospice care, pain management, comfort, etc. 

What this particular bill provision addresses is not the actual conversation but Medicare coverage of the conversation. By paying doctors for time they are now not getting paid for, they may be encouraged to hold even more end-of-life consults—thus allowing more people to openly discuss how to create the best death possible for themself, making this blogger very happy. 

And yet, proponents of it are pushing fear in our faces, speaking as though passage would magically make death come sooner. As though the government is going to be paying off doctors to tell patients it's time to go. 

The American Medical Association supports this provision. The National Hospice and Palliative Care Organization supports this provision. These are two highly reputable organizations. Plus, to insinuate that individual doctors would go against their ethical, sworn duty to "first do no harm" and actually give up on patients because they're given money from Medicare, is incredibly insulting. 

Sarah Palin has infamously gone so far as to call these "death panels," which is so absurd, I don't even know how to address the claim.

When I hear these arguments, I can't help but flash back to some of the anti–death with dignity arguments. 

One of the big arguments against death with dignity—one of the fallacy, weak arguments—is that insurance companies will use the legislation to push people into death so that they don't have to pay for continued treatment. (Remember the Martin Sheen ad?) 

Well, if you replace "insurance company" with "the government" and "death with dignity" with "healthcare reform," this is basically the same argument being paraphrased and reshot at us. 

It's inaccurate, and it's fear-based, and it's a shame that it looks like it might pull the public away from more information and better choices. 

When it's Your Neighborhood

I was just reading details about the 72-year-old shopkeeper in Harlem who killed two robbers while defending his shop. 

I'm shocked by how violent this whole situation is, even for New York City, even for Harlem—which you know if you've lived in New York, can be pretty good or can be pretty bad, depending on which block you're on. And I never knew Harlem well enough to know how this particular block is. 

But even if it were a rough neighborhood, for four men to enter a shop in the middle of the afternoon, announce their intent to rob the place, and pistol whip one employee, and then for that to be followed by the elderly shop owner opening fire with a shotgun on all four robbers, killing two and injuring the others. Man! That's graphic. 

I feel bad for the neighborhood. Something like that would be tough to shake off. It would be difficult to go back to the illusion of safety and invincibility—something we all need to some extent to go through everyday life. 

Once, when I lived in Seattle, there was a fatal police shooting on my street. Just that left me feeling like an exposed nerve for a couple of weeks. I don't know how you would reclaim your sense of home and community after having this down the street. 

Take a Pain Pill

Hospice Blog has an excellent post today about President Obama use of the term "end-of-life care." 

The Hospice Guy has noticed that Obama uses end-of-life care to refer to the elderly simply seeking healthcare, instead of differentiating between people who are actually in their last days, needing care that will take them through to their death. And in so doing, he worries that Obama is confusing the intent of hospice as a place where people can go to die in peace and as much comfort as possible once they have CHOSEN to die. 

As the Hospice Blog points out, Obama's use of the term is almost a window into how little he really knows about the day-to-day realities of the medical world. And whether you're for or against public healthcare, it's a little scary to think of anything but the utmost experts revising our healthcare system. Here's the video he shares.

(Please note: the title of this YouTube film is misleading. Obama is, of course, not that dismissive to the woman.) 

The woman asked if her mother, at 99, could have had a pacemaker under public healthcare, even though she was old because she had much higher than normal quality of life. I think the bigger question she was getting at was, what if it looks bad on paper, but when you see the patient in person, you can understand where a procedure makes sense—hence the reason she says, "A picture is worth a thousand words." And Obama's answer is disappointingly to infer that the surgery was not going to help (even though it did) and to tell her mother to take a pain pill!? 

He's telling her, no, right? I've watched this about five times trying to get through the political speak, but that's what's happening here, I think. He's saying, no, in essence, that the bigger concern is trimming the waste from the healthcare system and her individual mother matters less? Other interpretations? 

I love that people are discussing healthcare in such a high-profile way right now—especially when it comes to end-of-life matters like resource allocation in the last years, what constitutes quality of life that is good enough, etc. But I hate that the discussion is being handled with such vitriol. And I hate even more that a bunch of politicians, mostly constitutional lawyers, with voters and elections on their minds are going to decide how healthcare issues should be managed. 

I hope the legislators are consulting some good healthcare professionals behind the scenes. 

Never trust a corpse

I meant to catch this movie at the Seattle International Film Festival, but just didn't get around to it. So I'm excited to see this review at NPR.org; it gives me hope that wider release is on the way, and I might get a second chance.

I Sell the Dead recounts the exploits of two grave robbers as one of them is about to face the guillotine for his crimes. The horror film is supposed to be more comedy than gore, which is why I'm interested ... not to say that it isn't ghoulish and frightening. 

During SIFF, it played at a midnight showing, and from what I can glean, that pretty much characterizes the type of movie this is: fun, startling, a little gross, not too serious, dealing with the undead. What more could you want in the witching hour? 

It is directed and written by Glenn McQuaid and stars Dominic Monaghan and Larry Fessenden.   

Here's the trailer. 

Palliative Care Grand Rounds

The latest edition of Palliative Care Grand Rounds is up at Risa's Pieces, the thoughtful blog written by Risa Denenberg. 

Lots of great links to bloggers taking on the current healthcare discussion, in terms of end-of-life issues. And as always with PCGR, links to new bloggers you probably didn't realize were out there. 

New Blog from a Hospice Physician

Check out this brand new blog (started July 19th) called Hospice Physician's Blog. 

As the title suggests, it's written by a hospice physician, and has entries on the doctor's experience explaining the benefits of palliative care to reluctant family members, whether chemotherapy is always used in the most effective way, and whether physicians always know when their patients are dying. 

It's always good to have another palliative-care focused blog in the community. 

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."

Fran Johns has a new blog

A sign of how out of the loop I've been lately (due to a cross-country move), Fran Johns has a new blog, and it's taken me a month to notice. 

But enough about me: The blog is excellent. 

Fran focuses on issues facing the elderly, and Baby Boomers who have elderly parents. The current post shares the thoughts of a retired California physician on Death with Dignity now that he is facing his own mortality. It's amazing! 

Other posts address housing options for seniors and palliative care. 

The site doesn't load real well format-wise on my Mac computer, but it looks like the site is still in beta testing, and it's worth bearing with any format issues to get to the content. Fran is one of my favorite writers in the blogosphere, and I try to read every word she posts. Trust me; she's that good. 

Email from a Cancer "Survivor"

The following is an email that I received from a cancer patient named Georgiana. I am publishing it with her permission, although I tried to remove identifying characteristics, I am leaving the remainder of the email unedited. Georgiana, my apologies for taking so long to get this up on the blog. 

I hope you find her words as valuable as I do. Georgiana mentioned to me that she is considering starting her own blog, and I really wish she would because she definitely has a perspective and a story to share. 

"I am Georgiana McAdams, a 67 year old mother of 4 widely scattered children and a supportive,loving husband of 45 years. In 9-05 I was diagnosed with stage 1V rectal cancer - pathology from resection surgery showed progression to the liver. After a visit to -- Cancer Center and literally hundreds of hours of research into my particular cancer, I opted for nothing more than palliative care with an oncologist. No chemo - no radiation - nothing. I should mention I am not a professional, but have studied medicine passionately for many years. Currently I am entering "the big adventure" and uncharted territory as my liver functions are deteriorating and I have ascites and ankle swelling (being managed). I fully know what to expect right down to the very end and am in total acceptance. It's the little things that get you down - not fitting into your favorite jeans - or finding your favorite shoes are too small due to fluid accumulation, pain when bending due to tumor pressure, etc. I also have a small tumor in my left lung now. However, -- (Cancer Center) gave me 6-9 months in Jan. of '06 and my oncologist, based on current labs, says about 6 months now - that was in March. I think I will make it a little longer. Main point is my surgeon, oncologist and PCP will
tell you I gave myself a better QOL than they could have. I should also mention I broke my shoulder 2 years ago
and last June broke my hip (pinned). While I am slower I still manage to get out most days. I am ready for hospice
whenever it comes and have my family fully educated on what to expect so that there will be no undue hysteria
over what will be the normal process of dying. Please understand I am not advocating my choices for anyone else - it simply was the right one for me despite medical pressure in the beginning to do otherwise. My dilemma is communication with other people who see me as giving up the fight (although any doctor I talk to says they would do it my way) or simply not discussing the horrid, big "C" word. We really do need to change our views about death and the dying process. It is a normal and totally natural conclusion. I  currently know several people who have lost a loved one and in each case, there were last ditch, invasive procedures, costly moves to yet another trial center, etc.  These poor people should have simply been brought home and left to die in peace surrounded by supportive family. I am actually looking forward to hospice as then there will be the opportunity to talk it all out with someone who understands from a medical viewpoint. Lord knows, my poor husband has willing suffered
through too many hours of this and I just refuse to burden him further. He has heavy cardiac problems and is a doll nevertheless. Our local Cancer Support Group is a joke and again no one seems to understand my position of "do nothing". They say once you have cancer, a day will not go by without you thinking about it. Well, I can actually forget it for a week or two, although daily I have pain issues in various places, but I don't think cancer pain, I think shoulder pain (tumors pressing on the diaphragm) or abdominal pain or leg pain, etc.  I am absolutely sure that if
I had opted for chemo, followed by liver resection (Not even sure I was a candidate due to location of tumors) and then hepatic artery infusion, I would have been long gone.  Instead I have had over 3 and 1/2 years of decent QOL, if not prime.  There are always "new normals".  There was a time when you were considered a survivor if there was NED after 5 years. I understand that now you are a survivor if you have cancer and are still alive. How can I possibly
consider myself a survivor? It simply isn't to be and that's really O.K. ... I am doing my
best to educate people, where I can."

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. 

Mourning Public Figures

Inspired by the public tribute to Michael Jackson, the New York Times has put together this video on the history of public funerals and viewings. 

The introduction articulately states: "Memorials for public figures are equal parts mourning, celebration and spectacle." 

Potential Major Changes in the Use of Pain Medicine

The Diane Rehm show has a great episode today on a recent recommendations to the FDA on a scale-back of the safe dosage of acetaminophen.

It's not directly related to end-of-life issues ... but two painkillers, Percocet and Vicodin, do include acetaminophen, and they are sometimes used in palliative care. And, one of the recommendations made to the FDA was to ban Percocet and Vidodin.

I'm posting the link because it's an excellent hour of radio and an important issue for everyone to stay informed on. 

If for no other reason than who hasn't taken two tylenol or two Excedrin when they had a headache? And an interesting tidbit from these recommendations: two pills at once may be too much acetaminophen for your liver to healthfully process. 

Yemeni Flight's Lone Survivor

I am fascinated by the story of the 14-year-old woman who has turned out to be the lone survivor of the recent Yemeni airplane crash.

It's absolutely amazing to me that one, singular person could come out alive while 153 others died. 

Of course luck and chance must have played a role in her survival. But I can't help but think of Amanda Ripley's wondeful book, The Unthinkable: Who Survives When Disaster Strikes. In this book, Ripley researches the thought-processes and brain chemistry of people who are able to survive major disasters. I just can't get away from the thought that there must be something outstanding about this young woman.   

I wonder what it is about this girl that makes her such a survivor. Her uncle has stated that she had a broken collar bone, had hit her head, had burns to her knees, and still managed to cling to plane wreckage for hours. According to one report, it was 13.5 hours. 

Palliative Care Grand Rounds, Volume 1, Issue 6

This month's edition of Palliative Care Grand Rounds is now up at Tim Cousounis' blog Palliative Care Success. 

It offers a great look at what has been happening in the blogosphere this past month regarding end-of-life issues. And he very appropriately begins it within the framework of health-care reform and bioethics discussions ... because isn't that what's on everyone's mind right now?

Please take a few moments to check it out. 

Dan Savage on DOMA

Dan Savage rocked it on Morning Edition today. 

He spoke out against President Obama's decision to support the Defense of Marriage Act (DOMA). Savage said, "President Obama should be very angry with candidate Obama. ... Our expectations have not been met. Who raised our expectations? Candidate Obama." 

Those expectations were that DOMA would be overturned once Obama was elected. Instead, the Justice Department filed a brief earlier this month defending DOMA.  

Why does all this matter? Among other things, marriage rights allow a partner full survivor benefits, the right to decide on issues of care in the hospital, and the simple right to be there at the bedside when their partner is dying. Even power of attorney is often not enough to guarantee visitation or decision-making ability in the hospital for gay and lesbian partners. 

As he usually does, Savage laid it out like it just makes sense, and you'd have to be an idiot not to agree with him. He pulls off that angle like nobody else can. 

The Costs of Healthcare

So, I'm a little late to the party on this one ... but this is a great episode of NPR's On Point featuring the author of the much-talked-about New Yorker article on healthcare, "The Cost Conundrum." 

Atul Gawande has written about the high cost of health care in the border town of McAllen, Texas. And the article is getting attention in circles as influential as the White House. 

McAllen has one of the lowest average household incomes in the nation but also one of the highest average household costs for healthcare. Gawande investigates why and comes up with some pretty ethically shocking conclusions. 

There are some interesting discussions about end-of-life care peppered throughout the show. And it's just a fascinating listen for anyone who follows debates about the future of the medical industry. 

Here's a link to the actual article. Image from The New Yorker.

Parental Decision Making and Faith Healing

While I'm on a bioethics thread ... I've been reading up on this case in Oregon. 

Parents Carl and Raylene Worthington are being charged with manslaughter in the death of their 15-month-old daughter because they refused to seek modern medical treatment and instead opted for faith healing. 

The child had bronchial pneumonia and a blood infection, both of which the Oregon State Medical Examiner's officer have concluded could have been treated with antibiotics.  

I think it's always unfortunate when the state and the medical system have to interfere in the decisions of an individual family, but when the life of a child is at stake, sometimes it has to be done. Because, let's think about this, you don't want to interfere because of, first or all, the family's autonomy. Also because the parents should know the children the best and have their best interests at heart. Parents should be, and usually are, their child's greatest advocates. 

In the rare cases when the parents are making decision that clearly put the child at great risk, I think it's the responsibility of the state and the medical team to step in on behalf of the minor. 

It really doesn't seem fair to subject the child to religious beliefs that risk their life when they're yet too young to decide those issues for themselves. 

The Worthington case is even more complicated because the state isn't merely intervening in care; the parents are being brought up on criminal charges after the child's death. Oregon actually has a law that makes it illegal to rely solely on faith healing when you have a sick child who needs medical help. 

It will be interesting to watch how this unfolds—to see if the parents are convicted, and also to see if the law is amended at all now that it is facing its first real application.

Here's a great link for further reading on the ethics parental decision making in the medical process, if you're interested. 

Doctors and Lethal Injection

From today's Seattle Times, this article lays out a fascinating ethical dilemma. 

It describes the situation faced by Dr. Marc Stern, who formerly headed the medically program for Washington state's prison population. Stern quit his job when directed to oversee an execution. 

Stern felt the execution violated his ethical obligation as a physician to "first do no harm." Also, The American Medical Association, according to the article, disapproves of physician participation in lethal injections. 

Other medical staff with the Department of Corrections continued to work on the execution that Stern found objectionable, despite Stern directing them not to. 

This raises many interesting issues:

Should a medical doctor be involved with an execution?

Should other medical staff be involved with an execution?

Should a doctor work for a prison system if he/she is opposed to execution?

What would a prison system do without medical staff?

How could a lethal injection possibly be administered without some sort of medical supervision?

Was Stern right to try to impose his ethical concerns onto other staff at the DOC? 

Was Stern right to quit over the execution? 

Yet another example of how murky the world of medical ethics can be. 

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 :)

What happens to your MySpace when you die?

Seen on the brilliant Fail blog: a questions from Yahoo Answers—very sincerely, I think—asking what happens to your MySpace account when you die. The best answer reads: "It deletes itself. You see when you die a little microchip goes off in your brain and instantly deactivates any accounts you may have. They are inserted a few months after birth, everyone has them." It is indeed a Yahoo Answers Fail. 

Violent Death Onscreen

Christian Sinclair sent me this great article about Mike Doyle, an actor who has died violently on television (or acted out dying violently on television) seven times.

Several things we learn from the article: it's easier to fake die with your eyes open; find a comfortable position to lie in because you might be there for a while; when thinking back on past roles, sometimes it's hard to remember whether you were the murderer or the murdered; and moms don't like this type of work. 

Every time Doyle dies onscreen, his mother phones: “She’ll call me and say, ‘I know it’s not real, but I just want to make sure you’re O.K.,’ ” he said. “Not that many mothers have seen their son die over and over.”

Sweet and surreal at the same time. 

Blog from a Hospice Patient

One of my favorite discoveries from this month's Palliative Care Grand Rounds is this blog: Life as a Hospice Patient. 

It's a near-daily account of one woman's experiences going through hospice care. Her pain. Her treatment. Her embarassments. Her visitors. 

Entries like "Getting harder to breathe," are not for the faint of hear, but it's a great window into the world of hospice, and I think a personal perspective that maybe only blogging could give us. 

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. 

Alas, Poor Jude Law

From the world of theater: 

Jude Law is currently playing Hamlet on the London stage, and he has requested a real human skull as a prop for the scene in which Hamlet addresses Yorick—Hamlet's former jester whose skull he comes across when speaking to a gravedigger. It's one of the most famous moments in the play. And it seems Law wanted a skull that had actually been populated by a soul, a brain, a mind. 

It makes sense to me where his request comes from as an actor. The production company was actually able to track one down through an anatomic-parts supplier in Salt Lake City, Utah. However, due to health codes in London, they will not be able to use the real skull and have to go back to a fake. 

But I think, as the director of this play, as soon as this move made such a media firestorm, you'd almost have to pull back and return to a fake skull anyway. 

Once word gets out that Law is using a real skull on stage, that's all anyone would be looking at during the speech. It would be completely distracting. Already this hoopla is going to pull away from the moment ... but with an actual human skull up there, audience members would be pulling out binoculars and craining their heads to see how real it looks and whether they can tell the difference between it and any old prop. 

And just for your enjoyment and because I'm a huge Shakespeare fan, here's my favorite Hamlet, Laurence Olivier, handling this very scene. 

PBR Coffin

This story was submitted by blog reader Leigh.

Bill Bramanti really loves his Pabst Blue Ribbon ... so much so that he has commissioned a casket that is wrapped with a faux PBR label. 

This is my favorite part: To celebrate his purchase, the 67-year-old filled the coffin with ice and used it as a cooler filled with, PBR, of course, and put on a party for his friends. (You can see this in the second photo.) 

Well, he's definitely got his own aesthetic, but at least Bramanti is planning for his own death, and he doesn't seem to have any fear of the end, serving up cans of beer in his PBR coffin. 

New Compassion & Choices Campaign to Start the Conversation About End-of-Life

Compassion & Choices is launching a new campaign today aimed at encouraging patients to talk about end-of-life decisions with their doctors. According to C&C, the goal is to empower patients to understand their choices and make informed decisions. 

Today, C&C President, Barbara Coombs-Lee has an article about the launch in the Huffington Post. Read the article and spread the word.

As all of you know, I'm a huge proponent of informed decision making in the doctor's office. Patients should know their options and be equipped with all of the tools they need in order to make the best decision for themselves. 

Especially with something as important as end-of-life matters, how to proceed should be a conversation between doctor and patient (or between the entire medical team and the patient), and I applaud Compassion & Choices for taking such a proactive step in this matter. 

The article includes a link to a "Letter to My Doctor" that you can use to begin this conversation if you are nervous about having it in person. Compassion & Choices is also providing visitation forms that LGBT patients can fill out to help ensure their partners are allowed in when they are hospitalized.

These are awesome resources from an awesome organization.   

First Death with Dignity in WA

Yesterday, Washington state had its first death under our new death with dignity law. It was a 66-year-old woman with stage four pancreatic cancer.

Here is an article about the case from The Seattle Times.

Edwin Schneidman, Pioneer in Suicide Prevention

All Things Considered had a nice obituary of Edwin Schneidman, a legendary researcher of suicide prevention. 

Along with publishing several books, Schneidman founded the Los Angeles Suicide Prevention Center and the American Association of Suicidology. 

As the obit points out, Schneidman believed suicidal tendencies could often begin to be untangled by asking two simple questions: "Where do you hurt?" and "How may I help you?" 

Schneidman lived to 91. In this audio piece, he shares a quote in which he describes showing up to the ER at the age of 90, disappointed to still be alive. Realize he hadn't died, he sobbed, because he was ready for death. 

He also often wrote about enriching life by contemplating death and dying and was a proponent of open dialogue on both topics, arguing that people should be unafraid of death. 

What Would Jesus Twitter?

Christian Sinclair alerted me to this site, which he called a good taste fail. I couldn't have said it better myself. 

The site is called Tweeji and is like Twitter, except all the tweets are from dead celebrities—Bettie Page, Shakespeare, and yes, even Jesus Christ himself. 

Today, Jesus tweeted, "My day is about to end and I never got to go Jew fishing!?!? I need to buy a planner." 

Are you kidding me? Is it just me or is this incredibly tacky? 

Other tweets seem more like actual quotes from the famous figures, just abbreviated into tweet-like spelling.

Walt Disney tweeted today, "I believe that entertainment usually fulfills sm vital & normal curiosity 4 every man, woman & child who seeks it." 

Would this site be funny if the application was better, or is the whole concept a fail from the start? It's definitely sensationalistic and interesting on that level, but once you get beyond the shock-value of the concept, most of the tweets are either completely straightforward and a little boring or so shocking that they can't help but be offensive. 

Check it out. Let me know what you think. 

Online Estate Planning

NPR aired an interesting story this week about the legal battles that can ensue over email accounts, domain names, etc., after a person has passed away. 

A text version of the piece points out: "... few people have taken steps to plan for their digital afterlife. It's not yet common for people to include their online information in their wills, [John] Dozier [Jr.] says. And even if they did, and the properties were legally transferred to the beneficiaries, terms-of-service agreements on sites like Gmail and Facebook typically prohibit the use of an account by anyone other than the original owner, he says."

It's undoubtedly something we'll hear more about in the future as the portion of the population that has greater web presence begins to age. But man, it would never have occurred to me to include email passwords in my will. 

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. 

Palliative Care Grand Rounds, Volume 1, Issue 4

If you haven't already, please go check out Palliative Care Grand Rounds, Volume 1, Issue 4 at the Medical Futility blog, run by Thaddeus Pope. 

It truly has a wealth of information on what's going on in the blogosphere regarding death, dying, hospice care, palliative care. It's probably more than you can absorb in one read. All the more reason to get started now!

The next PCGR will be hosted by Angela Morrow at About.com : Palliative Care.  

We're starting to look like a community. Big props to Christian Sinclair for getting this all started. 

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.  

Middle Man

A hilarious clip about the reading of a will from one of my favorite shows, It's Always Sunny in Philadelphia.

There's nothing new here, I just ran across this online and felt like sharing. 

I love the sweater Dee wears to her mother's will-reading :)

Not his name

My mom is visiting the Midwest to help her mother prepare for a move. My grandmother will be downsizing and moving closer to other family, in part because of the fairly recent passing of my grandfather. 

One of the big tasks of this move is de-cluttering the house (something that happens to be one of my favorite activities, but that's neither her nor there). One room that simply will not be recreated in my grandmother's new home is an office/den that was strictly used by my grandpa. It's been filled with his paperwork, old work documents, fishing and hunting trophies, old calendars given to him by Hershey Foods—his employer. These things need to be tossed or put into storage, except for maybe the one or two especially sentimental items that my grandma wants to look at on a daily basis. 

It's a draining process, I'm sure. But one surprising thing that has come up for my mother: my grandmother won't let her throw away anything that has my grandpa's name on it. And it's not a security issue. Because we're not talking about bills and bank statements. Even old notes and junk mail with printed labels. 

When pressed for explanation, grandma says, "We can't throw away his name." 

But it's not the actual object with his name. Because my mother is allowed to throw away these things if she takes a Sharpee and blacks out his name. So there's something very specific about the power of his written name that my grandmother doesn't want to see end up in the garbage. 

I find this fascinating. Think about all of the times his name ended up in the garbage, on junk mail or whatever, when he was alive. And I'm sure that was no big deal. 

I've heard more talk from Midwestern relatives about the importance of protecting your name, and it's the only place I've actually heard someone say, "Your name is all you've got." So I wonder if part of this is regional. 

Mostly, I would guess it's just her trying to control whatever she can about death. A way to express her frustration about how unpredictable life can be. Also, she spent quite a few years as his caretaker before he passed. This lets her take care of him again in another way, even though he's gone. It's pretty sweet, even though it's not very effective. 

Oprah Cancels Columbine Show

Yesterday, Oprah cancelled the airing of an already-taped show that was to mark the 10th anniversary of the Columbine shooting. 

Her reason: she reviewed the finished show and found it focused too much on the killers. 

Clearly, from just the standpoint of informing her viewers, the perpetrators are a large part of the Columbine story. This dilemma of Oprah's brings up an interesting dichotomy that I think much of the media faces whenever there is a tragedy of this sort. 

To some extent, you have to investigate the killers or criminals and give them press or attention in order to get answers to "What were they thinking?" and "Why did they do it?" And isn't everyone wondering that when something like Columbine happens? 

But then there is this guilt that comes along with the fascination. A self-imposed punishment for giving attention to the people who did wrong. And on top of that, I think, an even greater sense that it's wrong to give them any compassion. 

I think these sensations appeal to the smaller part of our nature. What happened was wrong, without a doubt. The killers were responsible, without a doubt. But being curious about them is nothing to be guilty about. And extending compassion their way does not lessen the amount of compassion we have left over for the people they killed. 

Compassion and attempts to understand do not mean we condone. 

Squirrel Detonation

I don't know if this is making national news, but Spokane, Washington is having problems with an overrun squirrel problem in their arboretum. To solve it, they're blowing up the squirrels!

The parks department has hired a group called Rodenator, which pipes oxygen and propane into tunnels created by the squirrels. Those tunnels then blow up and collapse, killing the squirrels. 

The Humane Societies of both Spokane and Seattle have come out against this method, saying it may not be a pain-free way to kill the creatures. 

I used to live in New York; I certainly understand the need to rid yourself of unwanted pests, and I'm not entirely educated on just what damage the squirrels are doing to the Spokane Arboretum ... but I can't get over the idea that blowing them up is excessive behavior. 

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.