One Slide for End-of-Life Conversations

So, for all of you who are already gathering with loved ones this holiday weekend, why not take some time to discuss your wishes for end-of-life care?

Engage with Grace has put together a helpful, simple, five-step slide to start the conversation.

New York Advance Cancer Patients More Likely to Die in ICU

A study just published by Dartmouth College shows that advance stage cancer patients in New York state are more likely to die in an ICU than the average patient nationwide. In New York, more than 46% of these patients are dying in ICU, compared to 29% nationally.

The ICU care costs more and is a greater drain on state resources, and these cost issues are forcing the Healthcare Association of New York State to take notice of this disparity. So, we may have a case in which a bankrupt healthcare system is pushing us toward better end-of-life care for patients, in some instances. I think this section of the article sums the issue up nicely:

"Under pressure to cut costs, New York's hospital industry is finally welcoming a new focus on palliative care.

That means letting patients and their families know when medicine has reached its limits and spelling out the options, which include foregoing drastic interventions that would cause patients to spend their last days in expensive intensive care. Recognizing it's a sensitive issue, hospitals are making a point of saying they do not prevent patients from choosing interventions. The idea is to help people make the best choices for themselves, said Dr. Tia Powell, a medical ethicist at Montefiore Medical Center in the Bronx."

Personalizing your "deathbed"

A fascinating article from the New York Times about people going to major lengths to create a personalized space in which to die. The individual examples are fun to read through. But more than that, I think this article is yet another reminder of the beautiful work that hospice caretakers and social workers do for the sick and dying every day. Because these scenarios would not be possible without their help.

P.S. This photo is just about my absolute nightmare scenario for where I could be when I die. Am I alone in this?

(Photo from NY Times.)

Top 50 Nursing Assistant Blogs

Much thanks to NurseAssistant.org for including The Good Death in its listing of the Top 50 Nursing Assistant Blogs.

I am happy to be in such great company. If you scroll down the list to Hospice Care Blogs, you will see us listed amongst some of the best palliative-care focused blogs out there.

Thanks for the shout out!

Hospital Type and Likelihood of Feeding Tube Use

A new study published in the Journal of the American Medical Association suggests that nursing home residents with advance dementia have starkly different odds of being given feeding tubes depending on which hospital they are sent to.

According to the study, some hospitals used feeding tubes in as many as 1 in ever 3 patients, while other hospitals used feeding tubes in as few as 1 in ever 100 patients.

Not surprisingly, hospitals that were more aggressive about providing end-of-life care were more likely to insert feeding tubes. Also, likely to use them were large hospitals and for-profit hospitals.

The sad implication of this study is that it suggests hospital protocols become more important in deciding end-of-life behaviors than family and patient wishes.

Here's a link to the JAMA abstract.

End-of-Life Planning

Carla from Compassion and Choices raised an excellent point in the comments of another post. End-of-Life planning is rarely straightforward, and it's important to fully understand all sides of an issue before you make important decisions.

There are some potential flaws in the simplicity of the Five Wishes format (a form I previously blogged about). Barbara Coombs Lee has written a nice piece about it. While its clever branding makes it memorable, and the positive framing of "wishes" is a nice language to cast death planning within, the form does have bent toward prolonging life that will not work for everyone.

The form does not allow doctors to withhold any treatment with the intent of taking your life. And it could be argued that many such behaviors than would be spelled out in a living will or advance directive could be cast as taking a life.

I'm a firm believer that any planning is better than no planning because, at the very least, you're giving your loved ones some indication of your wishes, fully understanding the implications of the forms you are working with is important to having the kind of death you would like.

Palliative Care Grand Rounds

Hi all!

Another edition of Palliative Care Grand Rounds is up at Alive Hospice Blog. It's a great overview of what has been going on in the world of palliative-care-related blogs.

Check it out!

The funeral industry in Taiwan

A fascinating article from the New York Times about funeral practices in Taiwan—how elaborate the ceremonies are ... and how well paid the workers are. According to the article, a recent posting for 10 openings at a funeral home received 2,000 applications.

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.