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.

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. 

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 :)

Palliative Care Grand Rounds, Volume 1, Issue 3

Welcome to volume one, issue 3 of Palliative Care Grand Rounds!

Here you will find an overview of what's been happening in the cyberworld regarding palliative care, death, dying, end-of-life care, and all sorts of related topics for the past month. 

Entries in this series are rotating throughout palliative-care-oriented blogs and are hosted on the first Wednesday of each month. Next month's series will be hosted by Thaddeus Pope at Medical Futility on May 6th. 

There is a lot here, so if you want to read a bit at a time and come back later to read some more, that might be a good way to approach it. I do realize it looks overwhelming :)

That said, let's jump right in ... 

This month, a study was released in JAMA telling us that terminal cancer patients who are self-defined as religious are nearly three times as likely to seek life-sustaining measures near the end, and are also less likely to prepare for death—in terms of advance directives, living wills, healthcare advocates.

Also this month, Washington's Initiative 1000 went into law, legalizing physician assisted suicide. One stipulation of the law is that hospitals and individual practitioners can choose to opt out of the legislation. The has the potential to cause massive confusion. As a Washington-based nurse practitioner, risaden of Risa's Pieces, has an excellent post on his thoughts on this law, what he has encountered related to it, and how it compares to Oregon's law.  

Taking a harder look at the risks of skiing without a helmet, and the signs of serious head trauma in the wake of Natasha Richardson's death—a sad reminder that death by falling is the third most common cause of accidental death. 

60-Second Psych in Scientific American takes a look at whether the suicide of Nicholas Hughes, the son of Sylvia Plath and Ted Hughes, was due to hereditary causes. Children of mother's who kill themselves are more likely to commit suicide ... but is that correlation or genetics?

If the Rapture occurred, what would happen to your bank account? That's right, the Christian Rapture. Well, Mark Head thinks that in the event of the Rapture, in the midst of God's eternal glory, you will still be worrying about what is happening to your financials down on earth, So, for a $40 fee, he has a service that sets up an email that can be sent to your relatives with your bank account information. (And you can totally trust Mr. Head with your financial information.) "Christians on call" for the site log on to it to keep it going. If no one logs on for three days, it is assumed Rapture has taken place, and the emails are sent out. I guess you'd want to pick your most heathen-y relatives, just to ensure they're left behind to receive the email. How do you start that conversation?

This piece is a real doozy. How you go from normal life and a simple spinout in snowy conditions to freezing to death, or nearly freezing to death. And what it's like to freeze to death. Fascinating. Well-written. From Outside magazine online. 

A story about taking care of Sean, a former Fortune 500 company worker with early onset Alzheimer's, from the blog Confessions of a Young Looking Social Worker. 

A geropsychiatrist writes about two old goats—one figurative and one literal—both using the same meds to good purpose. Funny!

A touching piece that comes very close to my interests. A medical librarian writes about her mother-in-law's good death from cancer—thanks largely to the help of good hospice care—and the bittersweet satisfaction that brought the family. 

The blog Palliative Care Success discusses a NEJM article that shows high-spending regions of the country are more likely to recommend hospitalization for an 85-year-old patient with an exacerbation of end-stage congestive heart failure. They were also three times as likely to admit this patient to intensive care, and 30% less likely to discuss palliative care with the patient and family. The post suggests Advanced Palliative Care Organizations (APCOs) can help reduce the number of people dying in hospitals and reduce the number of days patients spend at the hospital near the end, but APCOs are limited in how many physicians and other professionals they are drawing. 

The relationship between palliative care and the church, the spiritual role of palliative care ... but also the palliative care needed by a dying church (in this particular community) are all addressed in this beautiful blog entry written by a former pastor and Tampa-based hospice worker. 

Losing a laptop becomes an opportunity to explore advance directives as a metaphor for being prepared for the death of technology with backup and storage. 

Fran Johns, one of my favorite bloggers, has a beautiful piece on the therapeutic and restorative qualities of pulling Oxalis. Fran is part of the slow-blogging movement and does not update often, but when she does, it is always something amazing. Be sure to bookmark her site. 

At The Mom and Me Journals dot Net, Gail Rae writes about donating some of her mother's items to a garage sale. The need to de-clutter leads her to rid the place of her deceased mother's items as if they are just things, but one special piece, a tiara, needs an important home. 

Dethmama finds welcome relief from her work as a hospice nurse in the form of a new puppy named Olive. She has also posted a long-awaited sequel to a great story, Hospice Hitwoman and the C.Y.A., about a family who is anxious to see their loved on pass away, before the right time even. 

At the Pallimed blog, Dr. Drew Rosielle discusses a study that shows most people do not understand the actual details of resuscitation, and many would choose to not have chest compressions, shocks IVs through the groin, even though those are sometimes regular parts of resuscitation. Dr. Rosielle also has an excellent post on JAMA's series on palliative care of latinos. 

Pride and Prejudice and Zombies: Seth Grahame-Smith has reworked Jane Austen's Pride and Prejudice to include zombie battles. You can find a fantastic (in every sense of the word) excerpt here. 

If you want some death at the movies, check out Sunshine Cleaning, an irreverent and touching comedy about two sisters who open an industrial cleaning business—specifically cleaning up after dead people. The film stars Emily Blunt, Amy Adams, and Alan Arkin. 

Is it ethical for a wife to use a deceased spouse's sperm for artificial insemination? The Health Monitor at Radiography Schools takes up this issue and contrasts it with other sperm-donor controversies of late.

Is there such a thing as a style for your illness? Dana Jennings writes about getting a buzz cut to develop a tough, "Prison Break"-esque style for his prostate cancer treatent. For him, the haircut is a "visible bulwark against the tide of emasculating side effects caused by the treatment of prostate cancer."

Thanks to all who sent in suggestions! I'm sure there is even more out there I couldn't get to. And if you're interested, here's where you can find issues 1 and 2. 

Religious Patients More Likely to Seek Aggressive, Life-Prolonging Care

The results of this study may seem somewhat contradictory, but they do not surprise me in the least.

A new study, to be published tomorrow in the Journal of the American Medical Association, reports that, of terminally ill cancer patients, those who were devoutly religious, were almost three times as likely to seek aggressive, life-prolonging care, and they were less likely to do advance care planning—living wills, DNR orders, appointing health care proxies, etc.

You might at first think that the religious would be ready to go on to the afterlife and therefore more comfortable with death and more prepared for it, but some of the anecdotal evidence I have heard from people in the medical field contradicts that supposition. Also, if you remember back to the Terri Schiavo case, it was self-identified religious groups fighting to keep her on life support.

Sometimes, theses issues overlap in ways that don't necessarily equate with common sense.

Vial of Life

I ran across this item at Bartell Drugs. They were selling them at the counter for a $1 donation.

The product is called Vial of Life. It's basically a large prescription pill bottle, and it comes with a magnet and some paperwork. You put the magnet on your fridge, fill out the paperwork in the bottle, and place the bottle in your fridge.

The magnet lets any emergency medical workers who might be called to your residence know that you have a Vial of Life in your fridge.

The paperwork includes information on medications, whether you have an advance directive, contact information for family members, any do not resuscitate orders you may have, even medical records if you want.

There is also an online version that involves affixing paperwork to the front of your refrigerator in a plastic bag.

The program is aimed at seniors, but it could be useful for anyone who has health problems. I love the idea of encouraging people to store their pertinent medical information in an easily accessible spot, especially in a way that emergency workers can find if they have to treat you while you are unconscious.

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)"

Advance Directives

Filling out an Advance Directive is something I've been meaning to do for awhile now. What exactly is an Advance Directive? I'm going to borrow the definition from Compassion & Choices of Washington because it is succinct and lovely: "Advance directives is a general term for oral or written instructions about future medical care if a person becomes incapable of stating his or her wishes. In these documents, both wanted and unwanted treatment may be specified."
Compassion & Choices offers a form for filling out Advance Directives in Washington state. The form includes instructions and things to consider as you go through each step of the process. If you don't live in Washington, you may still find the instructions and tips useful ... but here is a link to laws by state.
This came into my mind again recently because I have been reading Eleanor Clift's book, Two Weeks of Life. She writes about her husband's death, at home, in hospice care, and contrasts it to the death of Terri Schiavo. (Schiavo died around the same time as Clift's husband.) Now, my mom worked in health care, so I assume my family would not keep me alive on tubes for 15 years, but what if my mother were to pass away before me and others just couldn't make the decision? I guess that people know my wishes, but isn't it my responsibility to put them down in writing? Shouldn't I take charge of communicating those wishes instead of leaving it up to surviving family members to figure it out under already stressful circumstances?
I'm going to be out of town for a wedding later in the week, so I won't be getting to this immediately, but I will definitely write about my experience as I fill out this form. I'm hoping to approach it in the near future.