Wednesday, June 1, 2016

Communication & Practice: Re-Imagining the End-Of-Life Experience

by Stacey Tinianov

Transformative change takes time and effort yet these epic journeys always begin with single steps.

With bite-sized change in mind, how might we encourage little shifts in the way we communicate and practice to catalyze big change in re-imagining the end-of-life experience?

Redesigning Communication

If we would like to re-imagine the end-of-life experience, might we begin to reconsider our terminology as it relates to death?

“She lost her battle with cancer.”

Winners and loser conversations may be better suited for discussions around play-off games. When someone dies from their illness, claiming the disease as a victor does everyone involved a disservice. Might we reconsider these words?

“Do Not Resuscitate”

A DNR is a vital piece of information for patients being treated in a healthcare setting. And while the point is obvious, a verbiage change might be in order. As part of the 5/23 #Hcldr tweetchat, Dennis Kenez tweeted a simple idea: Instead of a DNR, might we consider an AND (Allow Natural Death).

When I read the tweet, I thought, “What a brilliant idea!” And when I explored the idea, I realized that this particular suggestion is not a new idea but has perhaps just been caught of the vortex of “Change is Hard.”

On December 1, 2014, Dr. Brett Belchetz covered the topic of moving to an Allow Natural Death order in his National Post article, “Do away with the term 'do not resuscitate'”

“In order to deal with the fact that most elderly and severely ill patients opt out of receiving CPR once the risks are explained to them, but are leery about signing DNR forms, we need to change our vocabulary. Instead of asking patients who say no to CPR to sign a form telling us not to care for them, physicians should be asking them to affirm their preference for a natural, dignified passing. Simply put, I believe the term DNR needs to go away, to be replaced with the term AND – Allow Natural Death.”

In our healthcare system of communication by code, another opportunity was articulated in the April 10, 2014, NYT article “A ‘Code Death’ for Dying Patients” by Dr. Jessica Zitter. Rather than a Code Blue, Dr. Zitter advocates for a Code Death and the surrounding process and protocol that advocates a more peaceful, natural process of dying. She moves through the phases of communicating the realities to the patient families and then into the technical aspects of removing interventions while keeping the patient comfortable. And, in her words, “Because helping patients die takes as much technique and expertise as saving lives.”

Redesigning Practice

Using the right words is critical yet still leaves plenty of room for a change in practice around how we handle end-of-life. The concept of a “Comfort Cart” in lieu of a crash cart by introduced in the August 28, 2013 article “Exchanging a Blanket for a Code Blue” by Richard Gunderman and Peg Nelson.

“The very day the decision was made not to call for the crash cart if Mr. Stephens’ heart stopped, a different kind of cart was called for.

This was a new kind of cart that is being implemented at a number of hospitals across the country: the comfort cart. Unlike the crash cart, it does not contain a cardiac defibrillator, endotracheal tubes, or powerful medications such as epinephrine and dopamine. Instead it contains much lower-tech but nonetheless powerful items, including music, scriptures in various faith traditions, and a variety of homemade “love” blankets. For the patient’s family, it also includes information on grief, the dying process, and lists of area support groups, funeral homes, and community assistance programs for burial. Finally, it contains a plaster kit for making a cast of the dying patient’s hand.”

OpenIDEO, in conjunction with sponsors Sutter Health, Ungerleider Palliative Care Education Fund and Helix Centre, has kicked off a new challenge:

Each year around 55 million people worldwide and over 2.5 million in the United States face the end-of-life. In the U.S., the end-of-life experience has shifted dramatically since the 1950s, as death has moved away from the home into institutions like hospitals and nursing homes. By the 1980s, less than 17% of people died at home. We believe the people and unmet needs behind these numbers inspire a huge opportunity for design. ~ OpenIDEO Challenge

While each of you is invited and encouraged to visit the Challenge website to include your creative ideas, we’ve also taken to the Twittersphere to generate conversation and input to this challenge. Please join us on June 1st at 6pmPT/9pmET to participate in the conversation and help us reimagine the end-of-life experience.

T1: How might we better prepare individuals & families for open discussions around #EoL care?
T2: When and how should #EoL conversations begin? Who should be involved?
T3: What verbiage surrounding the #EoL experience may be in need of an overhaul?
T4: What practices surrounding the #EoL experience may be in need of an overhaul?
T5: What other ideas do you have on how we might we re-imagine the #EoL experience?

Stacey Tinianov, @coffeemommy is a community engagement consultant and on the Advisory Panel for the OpenIDEO Challenge “Re-Imagine the End-of-Life Experience.”

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 6/1/2016 - 9p ET/ 6p PT

 and go to for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using for ease of following. You can also check out the new site dedicated to #hpm chat -

For more on past tweetchats, see our archive here.

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