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Updated 3/2017 -- all links removed (except to my own posts) as many no longer active.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

Shout Outs

Updated 3/2017-- photos and all links (except to my own posts) removed as many no longer active. 

Center for Advancing Health (CFAH), Prepared Patient Forum, is the host for this week’s Grand Rounds. You can read this week’s virtual tour edition here (photo credit).

Welcome to Better Health’s Grand Rounds Volume 7, Number 44!

This is our second time hosting Grand Rounds and we’re excited about sharing the posts we received.  The theme of this week’s collection came from a recent Health Affairs blog post by CFAH president, Jessie Gruman, Patient Advocates: Flies In The Ointment Of Evidence-Based Care, which addresses a few of the many challenges of basing health care practices, policies, and decisions on evidence of effectiveness. ……….

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Check out @globalsurgeon paper in July Bulletin of @AmCollSurgeons: Beyond Volunteerism – Augmenting Surgical Care in Resource Limited Settings (pdf file)

Surgical care was recently characterized as “the neglected stepchild of public health.” Critical storages of health care workers throughout the developing world have led to “calls to action” and have reinforced the need for safer surgery. …………..

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H/T to @angryorthopod who tweeted “I liked this reminder from @drpullen for physicians and patients "Don't Trust Dr. Google." http://ow.ly/5Mud6”

I jokingly tell my patients that I am consulting with Dr. Google when I go online in the exam room to find information, but in fact I rarely use the Google search engine to access health care information. …….

When my daughter was in an entrepreneurship program at the University of Portland (e-scholars) I told her of my frustrations with having easy one click access to the best free online medical information I use in the office every day. Together we put up a web site called Exam Room Favorites that is designed to be an easy to use home page for physicians. ………….

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Dr. Rob Lamberts (@doc_rob) was recently a presenter in the CDC Public Health Grand Rounds:   Electronic Health Records: What’s in it for Everyone? (text and video)

Electronic health records (EHRs) allow for the systematic collection and management of patient health information in a form that can be shared across multiple health care settings. …….

This session of Public Health Grand Rounds explored the issues of EHR implementation with particular attention to public and population health while addressing concerns of cost, patient confidentiality, and other challenges. .…….

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This is worth reading/listening to if you missed it on NPR yesterday:  'Twelve Breaths': Lessons From The End Of Life (photo credit)

When life draws to an end, family, caregivers and medical professionals face a flurry of often heartbreaking decisions. Are there any last treatments to try? How much longer can a patient hold on? When is it time to turn off the ventilator — and who gets to decide?  ………….

Lee Gutkin's essay collection, Twelve Breaths a Minute, captures the experiences of doctors, caregivers, family members, 911 dispatchers and others who have learned valuable lessons from witnessing life's final moments.  …………..

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H/T to @MtnMD who tweeted the link to this Huffington Post article: Humpback Whale Puts On Show For Men Who Saved Her (VIDEO)

When Michael Fishbach set out for his day of boating around the beautiful waters of the Sea of Cortez, he probably didn't think that it would be the day he and his friends would become wildlife heroes. As luck would have it, that's exactly what happened…….

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BYU exhibit features African-American quilts (photo credit) (Deseret News article by Carma Wadley):

Quilting has been part of American landscape for centuries, but each culture has taken the art form and made it its own.

The quilts you see in "From Heart to Hand: African American Quilts from the Montgomery Museum of Fine Arts" at the Brigham Young University Museum of Art are "very different from the quilts that many Utahns make," says Paul L. Anderson, MOA curator for the show. Yet, they have a folk-art quality, a homespun charm that makes them appealing, he says. …..

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.

Shout Outs

Updated 3/2017-- photos and all links removed as many are no longer active and it was easier than checking each one.


HL7Standards is the host for this week’s Grand Rounds! You can read this week’s edition here.

As a blog dedicated to “engaging conversations on healthcare and technology,” this week’s edition of Grand Rounds is dedicated to posts discussing the relationship between health care and technology. Technology in health care has received more than a notable amount of press over the last few years and more than a few people have something to say about it.

In response to Grand Rounds, we received a number of great submissions by health care bloggers, some positive and others negative, about the impact technology has had on how health care is perceived and understood, delivered and received. …….

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Next week I will host Grand Rounds.  There is no theme, but I would ask you to have them submitted by noon (CST) Monday February 7th.  To participate, please email me  [rlbatesmd AT gmail DOT com] -- include with the name of the post, the post url, the blog title, the blog url, and a short description of the post (one or two lines).  Make sure to put “Grand Rounds Submission” in the subject line of the email.

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In case you missed it, the new USDA Dietary Guidelines can be found here:   Dietary Guidelines for Americans, 2010.  Some of the key recommendations:

Increase vegetable and fruit intake.  Eat a variety of vegetables, especially dark-green and red and orange vegetables and beans and peas.

Consume at least half of all grains as whole grains.

Increase intake of fat-free or low-fat milk and milk products, such as milk, yogurt, cheese, or fortified soy beverages.

Choose a variety of protein foods, which include seafood, lean meat and poultry, eggs, beans and peas, soy products, and unsalted nuts and seeds.

Increase the amount and variety of seafood consumed by choosing seafood in place of some meat and poultry.

Reduce daily sodium intake to less than 2,300 milligrams (mg) and further for …….

Reduce the intake of calories from solid fats and added sugars.

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The 2010 Medical Weblog Awards Finalists have been named! Congratulations to all of them!  Well deserved. 

This year's competition is sponsored by Epocrates® and Lenovo. (photo credit)

Voting will begin this coming Thursday, February 3, 2011 and will close 12 midnight on Sunday, February 13, 2011 (EST). We will have instructions, voting booths, and further details here at Medgadget.com on Thursday.

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The Plastic and Reconstructive Surgery Journal website has a wonderful gallery of educational videos.  Here are the titles and links to a few of them:

Facial Fractures - Video 2 – Optimizing Miniplate Fixation for Simple Mandibular Fractures

Facial Fractures - Video 7 – Frontal Sinus Repair

Blepharoplasty and Browlift - Video 1 - Blepharoplasty in the Female Patient

Skin Grafts and Local Flaps – Video 1 – The Scalp Skin Graft

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A nice news piece from BBC World Service:  A Cosmetic Surgeon's Double Life (written and video)

Top plastic surgeon Dr Enrique Steiger leads a surprising professional double life. He may make money from performing cosmetic surgery for the rich, but he also helps the less fortunate by treating casualities in African war zones.

………For several months of each year, he also lives and works in battle zones with the International Committee of the Red Cross.

He performs life-saving trauma surgery on local people who are not offered the same emergency medical treatment that is available to troops.

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Via twitter:   @ctsinclair  “Handbook for Mortals http://bit.ly/dQGPns Free book by Joanne Lynn speaking now at @FIMDM”

This online edition includes the full text of the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D., an authoritative consumer guide to end-of-life care. For more information about the book, which you may also buy online, click here.

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Via @palmd comes a link to the Discover Magazine’s post:  Celebrating female science bloggers

There’s an animated discussion in the making about female science bloggers. It started in the wake of an excellent session on women bloggers at ScienceOnline 2011, and has led to several thoughtful posts on the issues that they face, self-promotion, dealing with sexism, and more.

……... So this is a list of women bloggers who I think you should read, with specific reasons why I think you should read them, and some of my favourite posts of theirs to get you started. And note, this is not a list of top female science bloggers; it’s an all-female list of top science bloggers. ……

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For those of us love cheesecake, this was shared via twitter.  I have yet to try it, but will (photo credit). 

From @purplesque “New evenin -binge favorite- cheesecake in a mug. Replace the eggs with milled flax.  http://www.2stews.com/2009/09/cheesecake-in-mug.html”

……. This cake is great for people at work, in dorms or if you just want cheesecake...fast! My Cheesecake in a Mug, is so good and versatile that you can have a different topping each day. ……….

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From Burda Style blog:

…..For our third installment of SEWING MADE EASY™ how-to video series, one of those employees, Jamila Jordan, joins Martha to show off how to make a super cute reversible purse using the SINGER® Curvy™ sewing machine. The template and instructions for this adorable bag are available here (link removed 3/2017) so you can whip up your own version at home!

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

National Healthcare Decisions Day

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

Nathan A Kottkamp, a healthcare attorney,  is the chair and founder of the grassroots effort to promote advance care planning and healthcare decision making,  National Healthcare Decisions Day (NHDD).  This day was chosen in a nod to Benjamin Franklin and his adage “Nothing in life is certain but death and taxes."   Yesterday, April 15th, was tax day here in the United States.

More than 75 national organizations, plus 660 state and local organizations, will have teams at hospitals, nursing homes, hospices, doctor's offices and even libraries to explain the benefits of advance directives.  Those who wish will be assisted in writing / signing living wills and other medical directives. The services are free.  For a list of participants check here.

It is not only important to discuss these end of life issues, but it is important to occasionally review our decisions and make changes to them as necessary. 

Kotthamp is quoted as saying "No one likes to think about the possibility of a life-threatening injury or disease, but the simple act of creating an advance directive can turn out to be an incredible gift for loved ones in the event of an accident or severe illness.  No matter where you live, you can fill out an advance directive without hiring a lawyer. It's easy to do and is free."  

I had trouble finding any specific locations around Arkansas.  If you know of any, please, let me know and I’ll add them.
White County Medical Center (Batesville, Arkansas)
Arkansas Advance Directive; Planning for Important Healthcare Decisions (pdf file)

The National Healthcare Decisions Day website has some great resources about advance directives and how to get one.