As patients, as family members, as friends, as health care providers, we have all faced end-of-life issues at one time or another, and we will face them again. And again.
This weekend, for the fourth year in a row, the "Engage With Grace" message is being broadcast virally, through a "blog rally," at a time when many people are with family and friends over the long weekend. The point is: we all need to have the potentially uncomfortable conversation with people close to us about what kind of treatment we would want, and they would want, if incapable of making or communicating health care decisions.
(If you are interested in also exploring other aspects of patient self-determination, then I invite you to check out a few other resources: (1) e-patients.net, the blog of the Society for Participatory Medicine, and please consider joining the Society, (2) The Walking Gallery and other work of Regina Holliday, patient activist and artist and (3) my Health 2.0 vlog – brief interviews on the topic of data liberation.)
End-of-life decision-making has long been an issue of great personal and professional interest to me, and I am proud to have played a role in having out-of-hospital DNR orders recognized in Massachusetts by EMS providers, as an example.
Download your copies of the Massachusetts health care proxy form or other states' proxy or living will forms – and add specific instructions about nutrition, hydration, and anything else that is important to you so that everything is crystal clear. My mom kept a stack of living will forms in the dining room when I was growing up, and was not shy about raising the issue with dinner guests and offering to witness their advance directives. Having the conversation is a starting point; we all need to follow through and make sure that our loved ones' wishes are documented, placed in medical records, discussed with physicians and other caregivers, and honored.
When I have the opportunity to speak to groups of lawyers or health care providers, I often ask for a show of hands: how many of you have health care proxies? The percentage seems to have increased over time, but it is still not where it needs to be. If groups that should be above average in this respect are not all raising their hands, then we clearly have a lot to do in terms of educating the general public about the need to have the sometimes difficult conversation with friends and family members. That's what the Engage With Grace project is all about. And with that, I turn over this post to Engage With Grace:
Occupy With Grace
Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.
Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it – it's the Occupy Wall Street movement that's got people talking.
Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn't an issue we need to raise our fists about – it's an issue we have the luxury of being able to hold hands about.
It's a mission that's driven by all the personal stories we've heard of people who've seen their loved ones suffer unnecessarily at the end of their lives.
It's driven by that ripping-off-the-band-aid feeling of relief you get when you've finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they'd want for themselves, and knowing you could advocate for these wishes if your loved one weren't able to speak up for themselves.
And it's driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you're all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!
Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn't matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.
We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country's sickest and most vulnerable.
Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:
For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they're in a crisis, which isn't the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor's office.
It's a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.
This is a time to be inspired, informed – to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.
Wishing you and yours a happy and healthy holiday season. Let's Engage with Grace
To learn more please go to www.engagewithgrace.org.This post was developed by Alexandra Drane and the Engage With Grace team.