Posts tagged humanities

On Organ Donation and Patient Wishes

by Katie Macaluso, AAHPM Quarterly Managing Editor

If you’re a member of AAHPM, you should be spotting a copy of the fall issue of AAHPM Quarterly in your mailbox any day now (if it hasn’t arrived already). Pick up this issue to learn more about the 2012 Annual Assembly, certification deadlines, advocacy efforts, and where palliative care falls in the readmissions boom (a feature article by Larry Beresford).

One standout article in the fall issue is “A Lasting Gift: Organ Donation” by Lucille Marchand, MD BSN. In this Art of Caring column, Dr. Marchand discusses one patient’s struggle to plan for organ donation upon his death. The patient was diagnosed with end-stage amyotrophic lateral sclerosis (ALS) and hoped to find meaning in his early death through the gift of organ donation. As the patient and his hospice team worked to develop a plan that would allow for a comfortable death for him and the successful harvesting of organs, it became clear that too many risk factors might prevent organ donation from being a viable option for him. Read the full article here.

Helping patients achieve their final wishes is so important to all involved in the interdisciplinary team. Have you encountered a similar situation to this one? How was it resolved? Do you have advice for your colleagues in hospice and palliative medicine?

Getting ready for 2012 AAHPM bookclub: help us pick next year’s book

Medical Humanities has played an important role in my personal development as a physician and palliative medicine doctor. Reading stories, novels, poetry, listening to music, looking at art and movies and plays have helped teach me

  • how to face suffering,
  • how to sit with it,
  • how to be curious about and wonder what will emerge if I stay long enough.

Two years ago, the humanities and spirituality SIG at AAHPM launched a book club – with Drew Dipin Faust’s The Republic of Suffering: Death and the American Civil War. This year, we followed with A. Verghese’s first novel, Cutting for Stone.

At the Academy meeting in Vancouver, we solicited proposals for next year’s book from people who attended the bookclub discussion. Instead of keeping the voting and selection to an insular group, we tapping into the emerging culture of “open access” and social media by opening the voting to the community at large – http://www.surveymonkey.com/s/2012_BookClub

To allow everyone time to read the book, we are selecting it early this year. The deadline for voting is coming up quickly. Please vote for your top 3 choices! While we will select the most voted for book for the Annual Assembly, the next most popular books will serve as topics for discussion for each season of the year.

Thanks for participating!

Suzana Makowski – Co-Chair: Humanities and Spirituality SIG

Storyteaching as a way to enhance mutual understanding

Creative methods in Storyteaching, by Karen Bell, RN, Nancy Boutin, MD

Storyteaching is storytelling with a twist. Both are learned skills, as was aptly demonstrated by two gifted storytellers/teachers. There is one essential and several important structural hints, but the essential issue is setting; that is, a safe place where stories of immense personal importance can be told without time constraints and in a language familiar to the listeners. That means the storyteachers must take the time to know the patient/family life stories and use analogies and language from those stories to which they can readily relate. (Because “time” is an issue here, much of the hour was spent justifying storyteaching as an essential therapeutic intervention.)

Another important skill is the ability to tell the story with lots of holes in it. They call this “interpretative space”. If it’s a story patients/families can relate to, they will fill the holes with their own stuff, so that it indeed becomes their own and has much greater impact.

We were encouraged to develop a set of story templates dealing with difficult themes we encounter each day (e.g., CPR/DNR, AHN, the “When?” question, the use of opioids, etc.). The slides have many tips about this, are exceptional, and will be on the AAHPM website.
Charlie G.

Palliative Care Grand Rounds 2.9

Welcome to the monthly edition of Palliative Care Grand Rounds the monthly review of the best of hospice and palliative care content from blogs. We started in February of 2009 and are almost done with our second full year. To see previous editions of Palliative Care Grand Rounds go the http://palliativecaregr.blogspot.com/.

Marten Creek Photo by Joan Robinson RN CHPN Seattle WA

This summer has been a exciting month for palliative care and hospice advocates. At the beginning of the month we were still taking in all the attention form Atul Gawande’s article in the New Yorker titled ‘Letting Go.‘ And then in the middle of August we had the ground breaking research published in the NEJM demonstrating early palliative care improves QOL, reduces depression and potentially can improve survival.

So I thought we could start with blog posts relating to those two big tent poles.

The Gawande Article

People were reflecting on the writing of Atul Gawande and I think there is a lot to learn from how he tells his stories. It may help in how you give a presentation or write articles or blog posts of your own. My favorite was a blog called ‘Not Exactly Rocket Science’, where blogger Ed Yong writes on ‘Deconstructing Gawande – why structure and narrative are important.’ Also check out Bob Wachter’s blog piece on Atul Gawande and the Art of Medical Writing. He writes:

In this month’s piece, Gawande continues to tackle the most important healthcare issues of our day. By doing this with such clarity and beauty, he makes us all a little smarter, wiser, and more sensitive. His writing is a gift.

Debra Bradley Ruder from the GrowthHouse blogs Goodbyes writes on the Gawande article as well.

The NEJM Study

Both Geripal (Alex Smith) and Pallimed (Lyle Fettig) jumped on the NEJM research quickly and provided really helpful insights into the research that you wouldn’t get just reading the New York Times or other media sources. Between these two posts there are currently over 35 comments! Several days later Drew Rosielle let the results marinate with him a bit and the result is a tasty dessert highlighting the implications for our field in his Pallimed post ‘You had me at improves HRQOL.’

Diane Meier jumped into blogging and wrote a good piece at the John Hartford Foundation blog, that was picked up my the (general medicine) Grand Rounds and got 2nd billing. Many other key blogs covered this as well including:

Other great bits

Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone’s character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time — whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.

It is doubtful that a focus on reducing EOL spending per se will result in as much savings as is often assumed, for one simple reason: The concept of the last year of life is inherently retrospective. You do not know when the last year of someone’s life started until it ends. The stylized fact that leads to the assumption of wasteful EOL spending., i.e., 1 in 4 dollars spent on care in the last year of life, is based on an inherently retrospective concept that does not translate easily into the prospective decision-making that would be needed to reduce wasteful, futile or harmful spending in the last year of life.

And then I understood. I wasn’t crying for him. I was crying for me.

I cried because I couldn’t imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn’t imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn’t imagine that my life, already a lot longer than Rob’s, would ever have that kind of meaning and impact. I understood then that my patient’s short life was telling me to live the rest of my own life better — to be warmer, and more open-hearted, and more loving.

people—actually mainly men—wished that they hadn’t worked so hard. They “deeply regretted spending so much of their lives on the treadmill of a work existence.” My wife would say that I work all the time, but I live a life where work and play are not easily distinguished. Is writing this work? It doesn’t feel like it to me. Tomorrow I’m off to give a talk at a science festival in the Austrian Alps. Is that work? The truth is that even in the most serious jobs I’ve always let the appealing (and often frivolous) come before the serious.

Some humor

Oscar the Cat - Photo by Stew Milne of AP.

So as you can see there are many people talking about the difficult things people don’t want to talk about. We are not alone in wanting to provide good quality care for patients and families facing with life-threatening illness. Sometimes with a little humor is a tough time, sometimes with fantastic insights into what it means to be alive. Go read and support the things that impact you with a comment, Facebook ‘like’ or email to a colleague.

Check out next month’s host the SWHPN blog called palliative-sw. They have a new look!

PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.

What Does the American Civil War Teach Us About Contemporary Death and Mourning?

Join the Humanities SIG at the Assembly in Boston for an illuminating discussion of the award winning book, This Republic of Suffering, on Saturday, March 6, 12:15 – 1:15 pm. Among the questions we’ll discuss:

This Republic of Suffering

Prior to the Civil War, the end of life process commonly occurred at home, with family, the family physician, clergy, community members, and others with long-standing relationships providing care and support. Funerals were commonly held at the local church, providing family, extended family, friends, and community members a place to express and share their grief. Custom also provided for public mourning, allowing the bereaved to openly express their grief, and for others to recognize and offer support. Circumstances of the Civil War – which in today’s population would equal 6 million deaths – profoundly changed these customs.

In contemporary America, when asked to describe how one wishes to spend one’s final months and days, respondents will often describe a scenario resembling a pre-Civil War process. Yet this ideal is frequently not achieved. In what ways does the contemporary end of life process reflect the death, realizing, and mourning processes experienced by many during the Civil War, and what interventions can end of life care practitioners consider to achieve the goals of the individual, their family, and community in such circumstances?

Come share your thoughts, learn from others, and take away new insights to apply in your practice. See you there!

Charlie Sasser & Karen Whitley Bell