Engage with Grace

Updated 3/2017 -- all links removed (except to my own posts) as many no longer active.

As I have in the past few years at Thanksgiving, I am again joining  in the  Engage with Grace (#EWG) blog rally.  It is a time when families get together.  Please, use this time to discuss end-of-life issues with your family.

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:

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.

A Lasting Gift

Updated 3/2017-- photos and all links (except those to my own posts) removed as many are no longer active and it was easier than checking each one.

Monday I read with interest the Amednews.com article by Kevin O’Reilly:  1 in 3 Surrogate Decision-makers Carries Lasting Emotional Burden: a new study finds that advance directives ease stress when making treatment choices for others.

"We had always thought about documenting your wishes and knowing what the patient wanted as a protection and a benefit for the patient," said Wendler, head of the Unit on Vulnerable Populations at the National Institutes of Health Clinical Center's Dept. of Bioethics. "This study suggests that there is an additional benefit as a protection for the family. Just leaving decisions up to the family may well be counterproductive and make it harder on the family, not easier."

I and my siblings can attest to the lasting gift our mother gave us.  There is a peace in knowing we followed her wishes when she had the massive intra-operative stroke which ended her life.

She repeatedly over the years told us what she wanted and what she didn’t want.  We are able to discuss it without feeling morbid.  My husband is not.

My dear husband finds it uncomfortable when I want to tell him what my wishes are when the time comes for tough choices.  I tell my siblings and hope they will help him (and me) when the time comes.

I don’t know what his wishes are.  So if I have to make the choices for him, I may in reality be making the choices I would want made.  Because it won’t be clear, there may be conflict between what his family (parents and siblings) would chose verse my choices.

Many of us medical bloggers promote Engage With Grace (a movement aimed at having all of us understand and communicate our end-of-life wishes) over the Thanksgiving weekend.  The Annuals of Internal Medical article (full reference below) reinforces the importance of this discussion between family members. 

I would go so far as to say the discussion should occur between friends as well. 

Having the discussion may become a lasting gift of peace you and I can give each other.

Here are my Five Wishes (pdf file):

1. I would ask my sister (CD) to help my husband (BH) make care decisions for me when I can't.

2. If there is no chance of recovery from the illness, then simple make me comfortable.  Do not do anything and everything.  If there is no chance of recovery from a major trauma, then do what needs to be done to preserve the organs for donation.  If the doctors don’t remember to ask, then tell them.  Donate everything that is usable – this includes the face, the hands, bones, heart, liver, everything.  As I wish to be cremated, it will be nice to know someone is helped.

3. I am not fond of pain, but hate the foggy headedness and nausea I get from the pain medicines I have taken.  If possible find a compromise for me so I can be aware of visitors, listen to music and books, etc.

4. I want visitors who will tell me jokes and stories, who will read books (novels, adventure stories, mysteries, newspapers, etc) to me.  If I am able, I will play cards and checkers with you.  Bring the dogs along.  Watch movies and TV with me.   Cover me with a colorful quilt.

5. I want all of you to know I love you.   Here are My Funeral Wishes.  If we (BH and I) still live at the same house when my death does occur (hopefully years from now), then spread my ashes under the oak tree in back (the one with the wind chimes) where the ashes of Columbo, Ladybug, and Girlfriend reside.

REFERENCE

Systematic review: the effect on surrogates of making treatment decisions for others; Wendler D, Rid A.; Ann Intern Med. 2011 Mar 1;154(5):336-46.

Engaging with Grace Blog Rally

Updated 3/2017-- video and all links (except to my own posts) removed as many are no longer active and it was easier than checking each one.

The past couple of years during Thanksgiving weekend, many of us bloggers have participated in a “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

The original mission – to get more and more people talking about their end of life wishes – hasn’t changed.  At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Think about them, document them, share them. 

Wishing you and yours a holiday that’s fulfilling in all the right ways.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here

While you are engaging your family in a health care discussion, perhaps, you could engage your family into creating a medical family tree. 

Map out your family medical history
Here’s how to create your medical family tree.

1. Find out your ancestry. Include the country or countries where you ancestors came from originally. Some ancestries, like Jews of Ashkenazi (Eastern European) descent, have a higher risk for certain cancers.

2. List blood relatives. Include your first- (parents, siblings, children) and second- (nieces, nephews, aunts, uncles, grandparents) degree relatives. Add the current age of each or the age when they died.

3. Add cancer diagnoses, if any. Include the age when they were diagnosed with cancer, if you can find that out. List details, such as the part of the body where the cancer started and how the cancer was treated (chemotherapy, radiation therapy, surgery).

4. Include any birth defects or genetic disorders that you learn about.
Use the Surgeon General’s Office Family Health Portrait. This online tool helps track all family-related diseases, not just cancer………….

Engage With Grace Blog Rally

Updated 3/2017-- videos and all links (except to my own posts) removed as many no longer active. and it was easier than checking each one.

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.


A bit of levity.


At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:



Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.




Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.




Wishing you and yours a holiday that’s fulfilling in all the right ways.



To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here