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by Nathan Riley 

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by Kayla Sheehan (@kksheehan)

October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018;1(3):e180351. doi:10.1001/jamanetworkopen.2018.0351

Ask any patient what qualities they desire in a physician, and empathy will almost always make the list. A physician’s ability to demonstrate empathy has been shown to significantly impact patient outcomes¹, increase patient satisfaction², and raise physician “compassion satisfaction,” which may hinder burnout (3). Though much debate surrounds empathy’s teachability, learning how and when to make empathetic statements is a crucial aspect of physician training. Many of us struggle with finding the right thing to say, but a recent open access study published in JAMA Network Open shows there may be more power in pauses made after empathetic statements than in the words themselves.

The study recorded 68 pediatric intensive care unit conferences over four years. Transcripts of every meeting were made, and empathetic statements were noted using the infamous NURSE criteria (naming, understanding, respecting, supporting, exploring). “Missed opportunities” to express empathy were noted as well. Empathetic statements were placed into two categories, “buried” and “unburied.” A buried statement was one in which the physician expressed empathy, but did not allow time for the family to respond. This most commonly occurred with the physician immediately segueing into clinical jargon, but was also counted as buried if another member of the team interrupted, or if the physician finished the statement with a closed-ended question.



Transcript analysis showed that physicians are fairly good at identifying when to express empathy, taking advantage of 74% of the opportunities analyzers identified. However, almost 40% of these statements were buried, and “medical talk” accounted for the vast majority of buried statements (95%). Interestingly, non-physician team members (typically a social worker or nurse) spoke only 5% of the time, but when they offered empathy, they did so unburied 87% of the time, further demonstrating the importance of a multi-disciplinary team in fully supporting patients and their families.



Physicians have a wealth of medical knowledge to share, but timing is paramount, and tacking jargon onto the end of a well-intentioned empathetic statement may prevent patients and families from even recognizing the empathetic effort at all. In October’s study, when physicians made unburied empathetic statements, families were 18 times more likely to respond with additional information, to express their fears, and to discuss their goals. Clear communication is an obvious cornerstone of the physician-family relationship, and while buried empathetic statements may be better than no expressions of empathy at all, they may leave families with a feeling of being unheard and ignored.



Though a busy clinician may not feel they have the time to open the Pandora’s box of family concerns and fears, investing time in “a pause” may pay dividends for all parties involved. For physicians, better communication skills have been shown to decrease instances of burnout, lower rates malpractice suits, and raise patient satisfaction scores⁴. Meanwhile, the family leaves these conversations feeling heard and understood, and the patient receives care tailored to them, with every fear, concern, and hope kept in mind.

If, as cellist Yo-Yo Ma would assert, “music happens between the notes,” perhaps the heart of medicine lives in the pause.

More Pallimed posts from Kayla Sheehan can be found here. More journal article reviews can be found here. More posts on communication can be found here.


Kayla Sheehan is a third-year medical student at California Northstate University. She enjoys singing, sharp cheddar, and long walks with her Australian Shepherd, Posey.

References:

1) Kim SS, Kaplowitz S, Johnston MV. The effects of physician empathy on patient satisfaction and compliance. Eval Health Prof. 2004 Sep;27(3):237-51. PubMed PMID: 15312283.

2) Pollak KI, Alexander SC, Tulsky JA, Lyna P, Coffman CJ, Dolor RJ, Gulbrandsen P, Ostbye T. Physician empathy and listening: associations with patient satisfaction and autonomy. J Am Board Fam Med. 2011 Nov-Dec;24(6):665-72. doi:10.3122/jabfm.2011.06.110025. PubMed PMID: 22086809;

3) Gleichgerrcht E, Decety J (2013) Empathy in Clinical Practice: How Individual Dispositions, Gender, and Experience Moderate Empathic Concern, Burnout, and Emotional Distress in Physicians. PLoS ONE 8(4): e61526. https://doi.org/10.1371/journal.pone.0061526

4) Boissy, A., Windover, A.K., Bokar, D. et al. Communication Skills Training for Physicians Improves Patient Satisfaction. J Gen Intern Med (2016) 31: 755. https://doi.org/10.1007/s11606-016-3597-2

Altmetric for this study: October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018;1(3):e180351. doi:10.1001/jamanetworkopen.2018.0351

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By Stacy S. Remke (@StacyRemke)

In about 2004, our program embarked on a regional pilot project to teach healthcare workers – doctors, nurses, social workers, chaplains, and others – to provide pediatric palliative care. Our region is the Upper Midwest: Minnesota, Iowa, Wisconsin, North and South Dakota. “Join pediatric palliative care,” we joked, “and see the world!!”

Little did we know.

From these first steps began a truly humbling and inspiring journey across many continents and into many communities.

Much of this started when a project I was involved with – Education in Palliative and End of Life Care for Pediatrics* (EPECPeds) – launched. The larger world was very interested in a flexible, curriculum to scale pediatric palliative care services. Groups from India, South America, the Pacific Rim, and an Isreali-Palestinian initiative among others invited us to teach and most importantly to train others to teach. When I travel I also look up palliative care friends I have met along the byways and see what their work is like. From these travels and workshops, relationships formed. Lively discussions erupted. What does pediatric palliative care look like in other countries? How has it evolved? What are the lessons learned to help, and ones to avoid?

Dr Chong Po Heng teaching about breathlessness at #EPECped pic.twitter.com/tSzk9UAQYa

— Stacy Remke (@StacyRemke) May 18, 2018

As a social worker, people usually ask me about mental health, psychosocial and bereavement support considerations. These are especially tough questions when one knows little of the cultural context, perceptions of, and approaches to mental health, or the resources available to address the needs. In India, the first question families are asked when a new diagnosis is made is “how much money do you have?” The second question is “what do you want the patient to know?” Collusion between the physician and the extended family about how much (if anything) to tell the patient, is common and expected. It is important to account for and adjust to these differences. But some things are universal. I was recently in Singapore, working with a pediatric palliative care team. On several home visits, I saw devoted families providing exquisite loving care.

International work can leave haunting memories too. In the aftermath of Hurricane Haiyan, in the Philippines, I volunteered near the community health center’s “intensive” care unit for the sickest patients. This small room with dirty green walls and sputtering florescent light held two narrow cots and a gurney, a large rusty O2 tank, and a cabinet. I observed a girl no older than 13 handbagging an elderly man lying on a gurney. In the other corner, an elderly person was huddled against the edge of a cot, hopefully sleeping. As I peeked into the room, the girl turned to me with an expression of great anxiety and distress. She did not break rhythm in her bagging task. I asked the physician about the scene, who explained that family members often must provide such care as no other resources exist. She expected this elderly cancer patient would die within a few days. I asked about discussing a do not resuscitate order or advanced care planning. She said no, that would happen with the oncologist at the regional cancer center…3 hours away. All I could hope for was that the grandfather wouldn’t die during this young girl’s shift at the bedside.

#EPECpeds getting underway this morning in Kuala Lumpur! Dr Ross Drake demonstrates interactive lecture. pic.twitter.com/LCFYKOEWl5

— Stacy Remke (@StacyRemke) May 18, 2018

These international adventures in palliative care can be enriching and maddening all at once and are likely to change us in ways we do not expect. For me, I no longer take for granted the tremendous resources and access people have here in developed countries. Routine illnesses here are life-threatening in other places. What then are the boundaries of palliative care? We apparently can’t take suitcases of morphine to places where supplies are restricted. (I asked!) What can we do then to improve a lot of those living with pain? As a start, make some friends. Go and visit them. Witness love, skill and dedication in action. Be humble. See what you can offer.

By the way, we never did crack North Dakota in our initial pilot effort, but other doors opened. Join the palliative care community and see the world, indeed!

*EPEC-Peds is an NCI funded curriculum and training initiative. PI: Stefan Friedrichsdorf, Joanne Wolfe, Co-I: Stacy Remke, Joshua Hauser

Stacy S. Remke, LICSW, ACHP-SW was a pediatric palliative care social worker for over 27 years and one of the founders of PPC at Children's Hospitals and Clinics of MN. She currently teaches graduate social work at the University of Minnesota, hoping to inspire the next gen palliative care social work community. She is also on the board of SWHPN. When not occupied with all things palliative Stacy can be found wrangling her 108 lb "puppy" Seamus.

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by Christian Sinclair

August 2016 has left the building along with a lot of heat, rain and wildfires.

Here is a recap of all of our posts from August 2016. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr, Instagram and LinkedIN.  We always appreciate it when you recommend us to your peers and social media makes it very easy!

Communication

• Palliative Chemotherapy: An Oxymoron by Rebecca Gagne Henderson

Humanities/Media Reviews

• Redefining "Death in Dignity": Sherwin Nuland's 'How We Die' by Vivian Lam

Interview/News

• Behind the Scenes: Media Watch by Barry Ashpole

Narrative/Opinion

• What happens when it is you? by Michael Fratkin

Research/Education

• August 2016 Journal Review by Christian Sinclair
• Trisomy 13 and 18: When a lethal condition is no longer lethal by Jenni Linebarger
• Worse than Death? ...Dependence by Ross Albert
• FOUR Score: Coma scales and prognosis in the ICU by Drew Rosielle

Comment Shout-out's for July (in no particular order):
Clay Anderson, Drew Rosielle, Lyle Fettig, Anthony Back, Lizzy Miles, Gerg Gifford, Kyle Edmonds, Kathy Kastner, Karl Steinberg, Lynne Kallenbach, Emilie Clark, Robin Kleronomos, Anthony Herbert, Tom Quinn, Karen Kaplan, Lisa LaMagna, Sidnee Weiss-Domis, Daniel Miller, Robin Youlten, Rebecca Gagne Henderson, Linda Dolan, Andy Probolus, Amy Getter, Alex Smith, Gerald Tevrow, Elizabeth Lindenberger, Vikranta Sharma, Elaine Glass, Matt Rhodes, Vickie Leff, Paul Rousseau, Emily Riegel, Will Grinstead, Jeanne Phillips, Staci Mandrola, Julie Koch, Michael Pottash, Thomas Reid, Pippa Hawley, Kat Collett, Michael Fratkin, Julie Christenson and a few anonymous people.

Highlighted Comment for August 2016
Frustrations with words not living up to their promise continue to be a theme this month. Thomas LeBlanc had a great comment on the challenges with the term palliative chemotherapy.

Let’s not throw the baby out with the bathwater; the best way to palliate cancer-related symptoms is to actually treat the cancer (if it’s treatable, and if the patient is not too frail to tolerate the treatment). The enemy here isn’t the chemotherapy, it’s the inappropriate use of it in patients who are too ill, or who have resistant disease, or whose goals can’t be met by the treatment. The enemy isn’t the chemotherapy, it’s the notion that patients should be forced to choose either cancer treatment or good palliative care. Instead, I believe they should be able to get both, and we should all work together as a team, oncologist and palliative care clinicians alike, to do what’s best for each patient at each step along the way.

Social Media Highlights

• Most popular Pallimed Facebook post: Condoloneces to Amedisys hospice on the death of Bill Borne - Reached 15k+ people
• Most popular Pallimed Twitter post: We need to be frank about death with terminal patients via @newsweek - 91 Engagements
• Most popular Pallimed Instagram Post: "That's all I wanted: for someone to look at me and listen to me, but in some beautiful and artisitc way." - Gene Wilder - 453 impressions

"That's all I wanted; for someone to look at me and listen to me, but in some beautiful or artistic way." - Gene Wilder #genewilder #willywonka #quotation #quote #hpm #hapc #palliativecare #listening

A photo posted by Pallimed (@pallimedblog) on Aug 30, 2016 at 1:11pm PDT

Passionate Volunteers and Writers Wanted
Do you love hospice and palliative medicine? Got something to say or find interesting things to share? Want to reach nearly 40,000 people with your ideas? We do this with a volunteer staff of ten, but we could use more regular volunteers.

If you are interested in writing for or working with us at Pallimed please check out the Pallimed Opportunities page and complete the form at the bottom. If you want to help we have something you could do! Like write this simple monthly review post (this would be really easy to hand off)! Or join our team of social media ambassadors to help run one of our social media accounts (especially with Facebook, Pinterest, LinkedIn, Instagram and Tumblr) - we do on the job training!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: Lionello DelPiccolo via Unsplash CC0 1.0

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by Jenni Linebarger

What is a “lethal condition” really? How does the definition change as medical advances are made? Several times a year, I meet parents who’ve had providers tell them that their baby has a “lethal diagnosis” (or worse, that the diagnosis is “incompatible with life”) when testing detects trisomy 13 or trisomy 18. Such dire prognostication sets the stage for all future interactions with the health care community. For some, it becomes a rallying cry to prove providers wrong, for others it becomes a sealed fate. For all, it declares a level of certainty that we just do not have.

This summer, a paper published in JAMA by Katherine E. Nelson and colleagues sought to provide “more data about survival in general and after interventions” for families who have children diagnosed with trisomy 13 or trisomy 18. They conducted a retrospective, population-based cohort used linked health administrative databases for all children born in Ontario between 1 April 1991 and 31 March 2012 with a diagnostic code for trisomy 13 or trisomy 18. The data from this cohort confirms that survival is not as uncommon as once thought.

They found:

• Median survival of 12.5 days for children with trisomy 13 , and 9 days for children with trisomy 18
• The rate of deaths slowed around 3 months of age in children with trisomy 13, and 6 months of age in children with trisomy 18
• 1-year survival was 19.8 percent for children with trisomy 13, and 12.6 percent for children with trisomy 18
• 10-year survival was 12.9 percent for children with trisomy 13, and 9.8 percent for children with trisomy 18
• ~50% of all the children had an organ system with a congenital anomaly (most often cardiac)

The researchers also looked at the surgical interventions patients with trisomy 13 or trisomy 18 underwent during their lives. ENT procedures were most common in children with trisomy 13 and procedures to implant medical devices were the most frequent for those with trisomy 18. Median survival after the first surgery was greater than 1 year for all except the children with trisomy 13 who had ophthalmic surgery and children with trisomy 18 who had cardiac surgery. The authors suggest such high survival following surgery “reflects both careful patient selection and procedural benefit.”

While the researchers hope that the survival data presented can help “guide decision making” there are many factors that influence decision making that this study was not designed to delve into. First, the data did not include all prenatal diagnosis, only those surviving to birth. Second, as the authors point out, survival and quality of life are not one in the same. (Although commentator Dr. John Lantos noted, “The concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment.”) Additionally, the data does not touch upon the decision-making itself – for instance, they did not report the percentage of deaths following decisions to withhold or withdrawal life-sustaining treatments.

So what do I take away from this study on the survival of children with either trisomy 13 or trisomy 18?

1. It is time to change the language around the diagnosis of trisomy 13 and trisomy 18. These diagnoses are not universally “lethal” (since greater than 10% survive greater than 10 years) and all surgical interventions are not futile.
2. Discussing prognosis and survival is still tough and filled with uncertainty. Which babies with trisomy 13 or trisomy 18 will die after a few days and which will live a decade? We still lack useful predictors of long-term survival when facing an individual family in a prenatal meeting.

I also reached out to lead author, and colleague, Dr. Kate Nelson. She agreed with the core take home message, and stated “While the majority of children die within the first few weeks of life, the children who survive can live a decade or more. Since there are few markers associated with long-term survival besides mosaicism, prognostication is difficult. Therefore, care must be individualized, balancing the risks and benefits based on specific clinical situations and families' goals and preferences.” She also noted that readers may link surgical intervention to longer survival, and shared the following: “Children who received surgeries had to live long enough and be healthy enough to undergo procedures, so patient selection likely played a major role in the high post-operative survival rate. More work is needed to understand how surgeries impact survival among children with trisomy 13 and 18.” You can link to the press release from her institution here.

References:
Nelson KE, Rosella, LC, Mahant S, Guttmann A. Survival and Surgical Interventions for Children with Trisomy 13 and 18. JAMA 2016; 316(4):420-429.

Jenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO.

Photo Credit: Trisomy 13 via Wikimedia Commons

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by Karen J. Wernli

In the summer of 2014, my sister-in-law, a new mother, died of cancer after 11 years with her disease. Although doctors gave her the best care they could, as a health researcher focused in cancer care, I wanted to do better for people like Clare. Then, at a scientific conference that fall, I learned that others had the same desire. Representatives from the National Cancer Institute were asking for studies to improve care for adolescents and young adults, including at the end of life. On the plane home, I started working with my research ideas. I realized that to know what young people with advanced-stage cancer need, want, and value, we need to ask them directly. That’s what the Clare Project is doing.

I was fortunate to get support from the Group Health Research Institute Development Fund for pilot work. My team and I started by interviewing a few young adults with end-stage cancer. I learned so much from them about their concerns and values. Now, my Clare Project team of Drs. Marlaine Gray and Evette Ludman and Tara Beatty and I are taking a new approach for the next phases of our work.

A personal approach for a personal project

Clinical studies usually recruit people through the health system, with waiting-room posters or physician referrals. Because our work asks intimate questions about end-of-life priorities, we wanted something more personal. Clare used social networking to keep in touch with friends and family, so we started a Facebook page and a blog to tell our story. These have been wonderful for connecting with people who support our research. But we’ve found an even better way to engage with patients.

Based on many helpful suggestions, we started looking into online communities for young people with cancer. Through social media like Twitter, patients and caregivers are meeting virtually for empathy, encouragement, and practical advice. These communities make patients feel less alone. They are places to learn and share about real issues such as how to handle treatment side effects. The people in these groups aren’t tech geniuses or first adopters. Many joined Twitter only when their health status spurred them to find others with the same illness. Connecting with people through these forums takes time and in the end, is highly efficient.

Marlaine, especially, has spent hours reading blogs, listening to podcasts, and following Facebook and Twitter feeds to learn the culture of online communities for young adults with cancer. This activity alone has been invaluable for our research by showing us the diversity of experiences, issues, and challenges that people are talking about. We’re still learning about blogging, posting, and tweeting, and we’re grateful to everyone who has allowed us into their conversations. By trying to be respectful members of these communities, we’ve been able to reach out directly, one-on-one, to potential study participants, to ask if we might talk with them. Everyone we’ve asked has said yes.

The future of patient-centered research

Our work is going in many new directions. We just received National Cancer Institute funding to understand nationwide trends in end-of-life care for adolescents and young adults. In the next phase of the Clare Project, we’re going to ask caregivers and health care professionals what questions people have about care and treatment and how our research can answer them.Please contact me and see @clareproject if you want to know more. My family is proud that Clare, who was a high school biology teacher, has a legacy in research.

I’m committed to having patients, caregivers, and health care providers help me formulate, conduct, and spread the word about my research. I’m convinced about using social media to do this. As an epidemiologist, I’ve changed the way I think about a study population. It can still be people connected geographically or by a health care system. But it can also be virtual: people meeting online to discuss their disease, how it is treated, and what they think about their treatment.

I’ve experienced how patients are willing to directly and honestly communicate their ideas to researchers using social media and how they are rewarded by participating. I think we should all realize that in the 21st century, this is the best way to connect with people affected by our work. Patients, caregivers, and providers are online, talking about the issues we’re studying. Shouldn’t we be listening?

Join us Wednesday, 9 eastern/6 central for #hpm chat to discuss palliative needs withing the Metastatic and Advanced Young Adult Cancer Community (#mayacc), We'll discuss effects on patients and caregivers, and how The Clare Project hopes to bring better understanding to the needs of those patients and caregivers.

Karen J. Wernli, PhD, is a Group Health Research Institute assistant investigator working with The Clare Project.

Originally posted at the Research Health Group Blog

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by Susan Thrane, RN, PhD

• complementary and alternative medicine (CAM), 
• integrative, 
• supportive, 
• adjuvant, 
• placebo and 
• hooey just to name a few. 

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by Kevin Madden, MD

Just as in any medical specialty, there are “bread and butter” aspects of Pediatric Palliative Care – situations we encounter on a frequent basis that we are quite comfortable in dealing with.  Pain management, constipation, family meetings, resuscitation status and discussions about goals of care certainly are at the top of that list.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 3/2/2016 - 9p ET/ 6p PT
Host: Kevin Madden MD Follow him on Twitter @madden_kevin


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 tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

Photo credit: ZebraPen.com

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by Betsy Trapasso

“I am scared that I will forget Joel. I don’t want to forget him.” These words spoken by Ryan Green about Joel, his terminally ill five-year-old son, resonated strongly with me, while watching the documentary Thank You For Playing. How many times have we heard words similar to these from family members of hospice and palliative care patients? How many times have we held their hands and looked into their eyes and assured them that loved ones can never be forgotten?

In Thank You For Playing, co-directors Malika Zouhali-Worrall and David Osit bring us into the world of the Green family who live in Loveland, Colorado. Ryan, the father, is an indie video game developer. Amy, the mother, is a writer. Joel has three young brothers. Ryan and his creative team are developing a video game called “That Dragon, Cancer*” as a way to honor Joel and to document the family’s experience of “raising a child who is supposed to die.” The film begins when Joel is three-years old and it follows the every day life of the family as well as the development of the video game.

*Dr. Meredith MacMartin discussed That Dragon, Cancer for Pallimed back in 2013. -Ed.


Thank You For Playing (2015) - Official Teaser from Thank You For Playing on Vimeo.


Joel was diagnosed with a rare brain cancer at age one and over four years of recurring tumors, surgeries and radiation and chemotherapy treatments he has outlived all the times the doctors thought he would die. Because of these treatments Joel can’t speak but that doesn’t keep him from being playful, loving and full of laughter. In the lighter moments of the film it is endearing to see all the brothers play together and to see how much they love and care for Joel.

In “That Dragon, Cancer,” Joel is a brave knight who fights the cancer dragon. Since babies can’t kill dragons, God fights for Joel. God can win. The Greens are Christians, and like so many of our families, their faith helps to sustain them through Joel’s illness. Players of the video game experience the life of Joel and his family at home and in the hospital. They are able to interact with Joel as he feeds a duck and they can push him on a swing. They see Joel receiving his treatments, sleeping in his hospital bed and sitting with Ryan in a hospital chair.

We see how players react to “That Dragon, Cancer” when Ryan takes an unfinished version of it to the PAX video game conference in Seattle. Players cry and are genuinely moved as they interact with Joel and progress through the game. They see that fighting cancer is a game and they experience what it is like for Joel and the family. Ryan cries as he watches the players and he realizes that there is great potential for the video game because “people get it.”

The scenes of Ryan and Joel in the hospital are heartbreaking. Ryan holds Joel and sings to comfort him. He sleeps with Joel in the hospital bed. Ryan cries and says that he feels helpless as he watches Joel receive more treatments. He wants to hold on tight to Joel and to never let him go. Ryan shares these experiences so that others can see what it is like to have a child with cancer. They are also helpful for our community to see because they show us what parents are thinking and feeling when their child comes to us for care.

When Joel’s brain tumors multiply and grow, the family travels to California so that he can take part in a clinical trial at the University of California, San Francisco. The family tries to live a normal life as we see Joel receiving his treatments. It is a bittersweet time because Amy is pregnant with a girl, whom they have named Zoe. The clinical trial doesn’t work for Joel so they return to Loveland and Joel is placed on home hospice care. Family and friends surround Joel. They hold him, sing to him and pray for him. The screen fades to black and we read that Joel died on March 13, 2014 at 1:52 am.

The film resumes three months after Joel has died. We see the brothers with their newborn sister Zoe. I can’t help but wonder what life is like for them. Ryan and Amy are trying to pick up the pieces in the aftermath of Joel’s death. They have finally decided on an ending for the video game that makes them happy and hopeful. The ending has Ryan and Amy on an island. Joel goes away from them while they stay on the island. Joel moves on and he makes it to the other side to be with God.

Ryan and Amy believe that “That Dragon, Cancer” will help people to see that there can be fulfillment, beauty and meaning in the deepest loss you can experience. Amy says that even though people will love Joel, it is love that will make the video game work. Love is what the players will experience and connect with in the game.

In the film, Ryan talks about how America is afraid of death and that we hide it behind closed doors. He wonders why we are not talking about the way things shape us because the things that make us us can be both tragic and beautiful. These two moving artistic creations, Thank You For Playing and “That Dragon, Cancer,” will help to start conversations about death, grief and loss and we all know that they are incredibly needed in our society.

*****************

I recently viewed Thank You For Playing at the ArcLight Documentary Series in Los Angeles. I spoke with the co-directors, Malika Zouhali-Worrall and David Osit, and they are excited for the Pallimed, hospice and palliative care communities to spread the word about their film.

Thank You For Playing will be screened at the Woods Hole Film Festival in Cape Cod, MA on July 29 and at the Melbourne International Film Festival in Melbourne, Australia in August 2015. It will also screen on PBS POV in the Fall of 2016.

Information and updates about Thank You For Playing, “That Dragon, Cancer” and the Green family are available on these websites. You can also subscribe to be on their email lists.

Thank You For Playing

“That Dragon, Cancer”

The Green family blog

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Betsy Trapasso is a former hospice social worker who now leads Death Cafe LA and advocates for good end of life care. You can read more on her site or follow her on Twitter - @BetsyTrapasso. We are excited to have her writing here at Pallimed!

Photo Credit: Still and poster from the movie "Thank You for Playing"

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by Amy Clarkson

It’s difficult for adults to talk to one another about death. The topic makes us uncomfortable. Despite this fact, most of us will muster up the courage and have these hard conversations when the need arises. There is something, however, far more difficult than talking to our peers about death and that is talking to children about death.

Parents will have memories of questions kids have posed about death when a pet has died or bird is found deceased outdoors. These awkward moments force us as adults to simplify a complex concept on the fly, and usually unprepared, at best we stumble our way through.

What do we do when it’s not a pet; when the impending death of a parent or grandparent looms?

That answer is as complex as the topic of death itself. There are some basic facts however, that help guide us. One, we know that avoiding the topic of death is harmful. Kids are very observant, and usually have already encountered death on T.V. or have seen dead insects. Though it may feel like we are protecting children by not talking about it, research shows it creates much more problems for the child.

It is also not a good idea to force information that may be too complex on a child. The best approach is a balance between avoidance and confrontation. The goal is to be honest, sensitive, and approachable.

Another mistake adults often make is to use euphemisms when talking to kids. Children are literal, so when an adult says, “Your Grandma is in a better place now,” Kids literally think Grandma might be at Disney World. The phrase “he just went to sleep” is also very scary for a child to hear. Children will become afraid of sleeping themselves, assuming they too might never wake up.

It’s helpful to keep in mind that the developmental stage of the child is important to understanding the concept of death. For instance, kids ages 2-4 don’t grasp the permanence of death. Death is temporary to them, and they will continue to expect the deceased to come back. This age group may react to death with separation anxiety, withdrawing, regression or confusion.

Kids ages 4-7 often have magical thinking. This group will often feel responsible for the death and may connect something completely unrelated to it. For instance, a fight at school gets linked to the reason they think their dad is dying. This group may appear unaffected and unemotional after someone dies. Because of the tendency to feel guilty for the death, this age group needs good communication and openness.

Once kids are 7-10 they begin to realize death is not reversible. This age group is very curious about death and may ask insensitive questions. They can view death as a punishment and will often start worrying that others around them may die, or that they themselves will die soon.

People often ask if children should visit someone who is dying. The best advice is to leave the decision up to the child. If they are interested, they should visit with thorough preparation on what they will see when they arrive. They should be given permission to leave at any time. Finally, children should never be forced or made to feel guilty if they don’t want to participate.

Even though death is a difficult topic for adults, if we approach it the right way with kids, the foundation for healing and understanding for a lifetime can be created.


Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: Still from the movie, "Is Anybody There?"

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A conversation between two specialists
by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article about the initial social work role in hospice and palliative care is the fourth article in a series of joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Pre-admission discussions

Lizzy: There are multiple stages during end of life where a hospice social worker might get involved. I have been asked by facility staff to have the initial conversation with families about hospice. It used to surprise me that I would be talking about hospice to the family before the physician does, but now I understand. The patient may have seen a specialist and received a Stage IV cancer diagnosis, or they have had a series of sudden changes. The nurses and aides at a facility see the patient every day and may themselves believe hospice would be beneficial, but don’t feel comfortable having the “hospice” conversation with families by themselves. I may be told that the family is not yet aware of the patient’s eligibility for hospice, and my role is to provide information about hospice for the family to make an educated decision. My goal in this meeting is simply to listen, and when appropriate, inform. I do not have an agenda to “sign them up” for hospice, and I think they are grateful that they are not pressured. It takes time to come to terms with the idea that a loved one is dying.

Sadly, there have been times where, by the family’s description, I can sense the patient is very close to actively dying. In some cases, I am the first one to really talk to the family about the immediacy of the situation. Usually this initial conversation happens with the family away from the patient per family choice. In these meetings, the family generally has a lot to say about the history of the patient’s decline. They may want to talk about every hospitalization and medical experience they have had over the past few years. I take the time to listen to their extended stories. Active listening involves reflective statements and acknowledgement of all that they have been through. I want them to feel they are not alone and that we will get through this experience together. I can usually tell whether they are emotionally ready for hospice if their stories thematically touch on futility and a patient’s continued decline, despite all efforts for curative treatments.

Allie: The start for an inpatient pediatric palliative care social worker is often different, less “urgent” than it can sometimes be for hospice. In the pediatric world, the inpatient medical teams often struggle with when to consult our team. With some diagnoses, we are consulted immediately because we know that the diagnosis typically causes a child to lead a shortened life span. However, with others, this can be a more nuanced discussion. The talk of the possibility of death, or even the fact that the child is “seriously ill” at the moment can be too much for some families, and even for some physicians. Many pediatric palliative care programs have chosen to change their names because of the stigma surrounding the word “palliative”.

Our team is known as the Pediatric Advanced Care Team (PACT) because we looked at studies that showed medical teams more readily referred to these teams than teams with the word palliative in their name. Often, when I introduce our team to a new family, I will make sure to explain that we are also known as the palliative care team, and to explain our definition of this term (providing added support for patients and families dealing with serious illness). Sometimes I will try to put the child’s current condition into perspective, explaining how sick s/he is in the context of the hospital. This is not to dishearten families, but rather to help them find that balance between hope for cure and acceptance of a potential reality that they may not want.

Of course, as you mention above, I tailor that initial meeting to where the family is at that moment so that I can join them there. It is crucial to convey that what they want to tell me about their child or themselves is important and that I have only a minor agenda at best. This can also present a challenge because when the diagnosis or situation is not as clear cut, we are often consulted at certain “decision-points”, times when family members have to make a choice about whether to treat a problem or not. A common example from our experiences is the decision to have a tracheostomy placed to make breathing easier. For some parents, this is a relatively clear-cut decision. The trach is intended as a short-term intervention that will help the child to breathe until s/he grows and can have it removed. For others, however, deciding to have a trach placed in their child can be the signal of a permanent decline in functioning or a change that will limit their ability to do things. Although some patients with trachs can move freely, others must remain tethered to a ventilator, which, though use of this can be taught to most parents, presents families with a huge change in their child’s and their own mobility. Although many times in these situations we have an opinion about what we might do in a similar situation, we are often reminded that we do not know the entire family context and how this decision fits into this context. We do not know the family’s belief systems, or other thoughts about morality that may steer their decision-making, so it is vital to advise and answer their questions completely, but ultimately let them know that, no matter their decision, we have their back as best we can.

Information gathering at admission

Lizzy: My role in the admission meeting is to try to build rapport with patients and families. My approach varies with every admission that I do, contingent on the situation. The exciting part of the hospice social worker job is you never know what to expect, and you need to be flexible and immediately responsive to the situation. If we are admitting someone as they are dying, I’m going to focus on the immediate needs of the patient and family. I will ask direct questions related to the family’s expectations surrounding time of death. I have found that it is helpful to know whether families wish to be present when the patient dies. If they say they do want to be there, then I provide education regarding patient choices and how the patient may pass when the family is not present. I will ask about funeral homes. I tell families they do not need to know exact arrangements, but it is helpful for them to know in advance who they are going to call “when the time comes.” With late admissions to hospice, it is common for families to say they have no idea what to do regarding funeral homes. I ask them if there are any funeral homes that they have used for other families.

For all admissions, I also try to find out the patient’s and family’s previous experiences with death and/or hospice. This informs me of their expectations. Commonly, patients and families will assume that this death will be like the others they have experienced. If they had negative experience previously with a loved one in pain, they may assume that pain is inevitable.

Finally, I aim to get to know the patient as they see themselves. I want to know what and who is foremost to them. One time I made the mistake of using a label that a daughter had provided to me. She called her dad a “biker,” but when I asked the patient about being a “biker” he became upset. He had a different vision of bikers, and did not want to identify with that subculture. That was a significant lesson for me to not necessarily adopt a family member’s visions of their loved one.

Allie: My role is very similar, and building that trust is key. Parents whose children have serious illness often have to make very difficult decisions about how their child will live or die. For many of these decisions, the outcome is unclear, so they struggle even more to know which way to go. By presenting ourselves as non-judgemental resources who will give input but will support the parents regardless of their decisions, we become that person that a parent can say something that feels awful, unspeakable, but in reality, is likely something that some other parent has said or felt before them. Permission is a big part of setting this up and something we talk about right from the start.
Also in the pediatric world, we find that not only is the family’s loss history important but so is their health history. More and more, when we talk with families about the decision to have their child get a tracheostomy, they have had some experience with someone they know who has had a trach. This can create problems, if for example, this was a scary experience for them when they were a child, or perhaps a negative experience but the medical technology has vastly improved with time. However, it can also be helpful for family members to know what they are in for with a certain decision.

Building rapport

Lizzy: My approach with patients and families is to present as open, interested and caring. I try to have 100% focus on the present moment. There have been admission visits with one patient and there have been admissions with 10 family members watching the discussion. I am an extrovert and I think that might help me be comfortable with meeting new people. Another trait that is helpful is to come across as non-judgmental. Social workers see all kinds of living situations and family dynamics. Sometimes we’ll observe that a family member feels guilty for how often they visit (or don’t visit). I spend a lot of time normalizing feelings that patients and families have.

Allie: Yes, being non-judgemental about social and family situations are also important. One of the roles I see as my job is to understand the context in which this family is operating. Who in the family is working and what does their money go to? Who makes decisions? Who provides emotional support? Who is the spiritual rock? As an adult with several unique family dynamics in my own life, I think this helps me remember that family is what you make it, and by understanding what they have made their family, I can help others understand why they may not make the choices we think they should, such as “not visiting enough” or “not getting enough sleep”. Unlike you, I am an introvert, so my style might be a bit quieter, but I do have dimples and smile often, so that helps get my foot in the door sometimes. I often will break the ice with an observation about the patient or a sibling, which helps show that interest that you mentioned. There are families that I meet with who are also introverts, and this can be a bit awkward, but I just figure if I keep asking questions, I will eventually land on a topic of interest for someone in the room and we can go from there.

Note: If there is a topic that you would like Allie and Lizzy to cover in their articles, please do send us a note

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Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio at Greystone Hospice. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW