Wednesday, November 26, 2008

A Tool for Discussing Wishes for End of Life Care

Paul Levy, President and CEO of the Beth Israel Deaconess Medical Center and author of the superb "Running a Hospital" blog, told me about Engage with Grace, a program that offers a simple and powerful tool for talking with those we love about our own end of life care wishes.

The website tells a moving story about Rosaria Vandenberg, a 32 year old woman who died from a malignant glioma, the same cancer that Senator Kennedy has. In light of Rosaria's wishes, the family helped her die at home, which allowed important loving exchanges with her two year old daughter.

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.

The Engage with Grace "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. The tool is a single 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. A group of like-minded bloggers are 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.

We are encouraging readers to download the 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. We should all commit to being able to answer these five questions about end of life experience for ourselves and for our loved ones and to helping others do the same.

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.

(This post draws on material written by Alexandra Drane and the Engage With Grace team.)


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.

Jim Sabin said...

Hi Roy -

It's always good to hear from you. Your "Health Care Renewal" blog has been an inspiration for me!

I agree with you that "it depends" will typically be the initial answer to questions like "if there were a choice, would you prefer to die at home, or in a hospital?" (#2) or "could a loved one correctly describe how you'd like to be treated in the case of a terminal illness" (#3).

The literature does indeed show that our values are different at different stages of life. But I believe that if the ice is broken for a subject that is often taboo, at the very least the family member will have something to draw on in the future. And with luck the now-discussable topic could be returned to as needed over time.

The key question is - what happens after "it depends"? My hope is that there would be some back and forth discussion, as there was when I tried the five questions with my wife. For me, the die at home/die in a hospital question led to discussion of how much I believe in the concept of hospice, and how, in a circumstance of terminal illness, I hope that a hospice conversation would occur too early rather than too late.