#EWG -- A group of us bloggers have been conducting an Engage with Grace blog rally each Thanksgiving, as it is a good time to be with family and talk turkey about end-of-life issues. Here's a summary prepared by Alexandra Drane and others involved in this issue.
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:
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 together.
To learn more please go to www.engagewithgrace.org. This post was developed by Alexandra Drane and the Engage With Grace team.
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 together.
To learn more please go to www.engagewithgrace.org. This post was developed by Alexandra Drane and the Engage With Grace team.
These conversations are imperative, but in my own family I recently found they are not simple. Despite the presence of a fairly explicit living will document forbidding resuscitation which I was holding in my hand, my 89 year old mother, on admission from the ER for a GI bleed, was asked if she wanted to be resuscitated if her heart stopped. Her reply: 'I'd like you to at least try.'
ReplyDeleteOn a visit with her primary doctor after discharge, he asked the same question but with all the dismal statistics about her chances of surviving resuscitation with normal cognition, of leaving the hospital, etc.
Her answer that time was different.
Although I still have the written document, I now realize my brother and I will still largely be on our own when the time comes. Any direction on how to solve this dilemma is welcome.
nonlocal MD
Drane and others who are working hard to stimulate these conversations spearhead what should become a centerpiece of medical engagement. Families have little direct knowledge from which to weigh risks and benefits, and few physicians have training to standardize and humanize the process of decision-making.
ReplyDeleteConflicts at the intersection between the strongest desires for survival and relief from suffering has been demanding daily work of hospital ethical support services and social work for decades, but elevation and resourcing from the medical community is variable, and often poor. 'Engaging with grace' could well be their job description. Hospitals would do well to follow Drane's lead and require standardized training to all providers in appropriate information sharing and ethics-driven support of the iterative process for patients and their families. CMS should invest in these services as core prevention against the wasteful, and harm prone, high variation care most likely to occur at the end of life. We need to push for support along the entire chain of such decisions: demographics and technology alone predict a tsunami ahead.
At the St. Joseph's Healthcare System, we opened New Jersey's first geriatric ER nearly three years ago. It was an immediate success and includes a significant palliative care component where end of life discussions are initiated. Not "death panels," but compassionate care.
ReplyDelete@nonlocal MD
ReplyDeletehttp://www.annals.org/content/151/5/345.abstract
An excellent article in the Annals of Internal Medicine about addressing these thorny issues.
Dear Anon 8:49:
ReplyDeleteThank you for the abstract; I read it. (I am retired and therefore have no access to the full text). Interestingly, the abstract describes my mother's later conversation with her PCP, but the hospitalist in the ER seemed only interested in a yes or no answer so she could check off the proper box in the chart. This approach, of course, is no good for either the patient or the hospital, nor the taxpayers. Too bad some of us MD's are still so shortsighted......
nonlocal MD