Wednesday, November 26, 2008

Engage with Grace

Several dozen bloggers in the health care field and beyond are engaged today and through the Thanksgiving weekend in a blog rally*, simultaneously posting the item below to encourage conversation about a topic that's often avoided but needs to be addressed in every family: How we want to die. I've written about this before, with regard to my mother. Please try it, using the slide above as a discussion guide. It's not that hard to have the conversation with your loved ones once you get started.

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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 (that's it above) 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. )

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* In case you are wondering, "blog rally" is a term we invented this past weekend
. A blog rally is the simultaneous presentation of identical or similar material on numerous blogs, for the purpose of engaging large numbers of readers and/or persuading them to adopt a certain position or take a certain action. The simultaneous nature of a blog rally creates the ironic result of joining the efforts of otherwise independent bloggers for an agreed-upon purpose. As far as we can tell, this is the first recorded use of a blog rally -- occurring from November 26 through November 30, 2008, in support of a viral movement called 'Engage with Grace: The One Slide Project' -- organized to encourage families to discuss end-of-life care issues while gathered together for the Thanksgiving holiday weekend. This particular blog rally also has a parallel component on Facebook, where many people are donating their status to bring attention to Engage with Grace.

11 comments:

Lachlan Forrow, MD, FACP said...

Thanks, Paul. I hope everyone will spread this "one slide" to their mailing lists.

As Director of Ethics and Palliative Care Programs at BIDMC, I see firsthand the importance of these conversations-in-advance. The gratitude that family members (and I) have to a patient who is now unable to communicate but who previously made at least some very basic wishes clear is far beyond words. Tragically, I far, far more often become involved in the almost-beyond-word painfulness of situations in which a family simply does not know what mom or dad or their other loved one would want. When suffering like that is so preventable, there really is no excuse for it to happen so often.

For many years at BIDMC these days before Thanksgiving have been our "Talk Turkey Days", during which with humor (turkey-themed display cases, etc.) we set up tables outside the cafeterias and in other high-traffic areas encouraging all BIDMC staff to take home some health care proxy forms and other basic information and tell their family that their medical center says "It's time to talk turkey" about these issues. We regularly hand out over 1,000 of these forms a year. Getting the conversations started is the hardest thing, and sometimes humor can help.

One other piece of advice to people:

Do NOT worry about trying to figure out EXACTLY what you (or your loved one) would want in every situation. That's far too hard. A beauty of the "one slide" is that it is simple and basic. Or just ask mom: "Are there any things that you are sure you WOULD want if you had a terminal illness? Are there any things you are sure your would NEVER want?" If we can at least get those things right, places like BIDMC will be in a much better place to ensure that our patients get the care they want and need near the end of life.

Lachlan Forrow, MD

Neal Linkon said...

Wonderful Thanksgiving concept, thanks for raising it. And we have joined your "blog rally."

http://www.greystoneblog.net/?p=103

Missives From Suburbia said...

In a wild fit of coincidence, I just spent the morning with my lawyer and my husband, finalizing our will and medical directives. This slide will be very helpful in finishing up that conversation. Thanks!

Paul Levy said...

Thanks, Neal!

Glad to help, MFS!

joanne said...

Our blog (www.newhealthdialogue) is think-tank based and therefore mostly about health policy. But I as a journalist have written extensively about end of life and palliative care, and we joined in this "blog rally" with a few thoughts and resources of our own today.
http://www.newamerica.net/blog/new-health-dialogue/2008/talking-grace-8649

Roy M. Poses MD said...

But unless you are unfortunate enough to have a terminal disease, how in the world should you answer this?

It seems to me, for a healthy person, or even a chronically ill person, the answer to every question except 4 would be "it depends." They would depend on the circumstances in which one would actually have to make such decisions.

For example, for a patient with a heart attack (myocardial infarction), the probability of a life-threatening arrhythmia is real, but the success rate of cardiopulmonary resuscitation for this circumstance is relatively high. So it would make sense for many people to answer 5 for question 1 were they to have a heart attack, knowing that background.

But it might be very different for someone who acquires a debilitating and painful chronic disease.

Furthermore, could you really predict what you would want or how you would feel if you were to be in such a situation?

In fact, the psychological literature suggests that people are not good at predicting their decisions or their values in advance were they to encounter some situation which they have never previously experienced.

So I am unfortunately skeptical that for most people addressing these sort of simple questions will lead to any kind of enlightenment.

James said...

A wonderful project, Paul. I've loaned space at my blog to further this project.

Paul Levy said...

Thanks, James.

Roy, in response, in addition to the link I embedded about our experience with my mother -- which she wrote when she was in excellent health, more than a decade before she died -- I can offer this story from the comments section of boston.com:

My mom grew up in an Irish family and came to this country in the 60's. They were very superstitious and didn't reallly believe in talking about end of life care, etc...probably thought it was bad luck. She was one of 12 siblings, and had a lot of chronic health conditions. She had the foresight to get a health care proxy and sit down and discuss with my brothers and I exactly what types of measures she wanted, even though my brothers and I were very reluctant to have that discussion. I am so grateful that she did that. It gave us great peace of mind and I was able to explain to my aunts and uncles exactly what Mom wanted along with her physician. Since then, I have been approached by a couple of my aunts, asking for advice about getting a health care proxy. This is an important conversation that EVERY family should have, no matter how painful. It was uncomfortable for us at first, but if you should ever need it, it will bring you great peace of mind to know exactly what your spouse/parent/sibling wants.

jmg said...

great idea. Having recently lost my mother it was good that we has discussed elements of her care. She had made a decision to stop the chemo she was having, had put in place power of attorney arrangements and had reserved her final resting place. This made our decisions simple. In the week or so before she died she said to me I want to go home dont stop me will you. Tempting as it was to get treatment for her in her last hours we respected her wishes and held her hand. I've no doubt that the alternative would have been the same outcome but would have occured in an ambulance or a cas corridor. For a while after she died I wished we had done more medically but that is grief. I knew her wishes and it is good that we followed them.

Dale Wolf said...

The questions imposed are integral to what I often write about at The Perfect Customer Experience. Because patients are customers of the healthcare system, it is important that we be heard on how we want care delivered to us.

Nowhere is this more important than how we want to be treated at the end of our lives. We make some of these decisions with our Living Wills, but not every event that puts us in a life threatening situation can be anticipated.

Generally, heroic measures of preserving life are silly. But life is precious and at least for our family we have agreed to do everything that is reasonable in a situation, but trust our physicians to be knowledgeable and caring and to help us make appropriate decisions.

What really fascinated me on the Onel Slide Discussion is where, if all things were under control, where would we prefer to die. I had a close friend with terminal cancer who wanted to die at home ... it was where his heart was. But afterward, his family had to move because their home now held painful memories. Another loved one chose a hospice and for all of us involved that was a wonderfully peaceful place to die. I suspect most would prefer not to die in a hospital, but if so, hopefully the patient will be surrounded by family and loved ones.

In the end, where we die will be circumstantial. But if any of us in our family have a choice, it would be in a hospice.

Thanks for raising this issue. It will cause a lot of people to address thoughts that otherwise would never surface until it was too late.

Dale Wolf, www.perfectcem.com

Anonymous said...

I think the conversations arising from the slide would produce desired results. It allows discussion on what has always been out of most people's comfort zones.
Health care providers should discuss it among themselves and with patients and encourage them to discuss with their families.