Mastodon Pallimed: arts
Showing posts with label arts. Show all posts
Showing posts with label arts. Show all posts

Tuesday, January 1, 2019

First Ever Medical Humanities Chat (#MedHumChat)



by Christian Sinclair (@ctsinclair)

What started off as a spontaneous tweet by resident Colleen Farrell, MD (@colleenmfarrell) generated a swell of interest from the health care Twitter community and now is being fully realized with the first Medical Humanities chat on Twitter (#MedHumChat) starting tonight January 2, 2019 at 9pm ET.

While not directly focused on our field, we know many hospice and palliative care clinicians have a deep appreciation and connection to the humanities and thought this chat would be of significant interest to the Pallimed online community. We know how hard it is to get Twitter chats started and sustained, and since this chat occupies the same time frame as the old weekly #hpm chats, many of you may be looking for something to fill that gap we left open back in 2017.

Dr. Farrell was kind enough to answer some questions about the chat below.

------------

CTS: What key reasons make the humanities are important in training of clinicians?

CMF: Oh so many reasons! My organic chemistry professor in college (David Richardson at Williams) urged me to take classes to “understand the human condition.” (I ended up no sticking with my chemistry major as planned and majored in women’s and gender studies with a minor in Spanish.) I think so much of what we do in medicine is trying to understand the human condition, but our ways of doing so in medicine are somewhat limited. For millennia, humans have been telling stories and creating art to make sense of human experience and the mysteries of life and death. We sometimes make the mistake of thinking we only need modern medicine to make sense of life and death but so much mystery remains. I find turning to stories and art helps me make sense of the vastness of what my patients are experiencing and my own experience as a doctor. I think art ultimately raises more questions than it answers, and when it comes to suffering and death, what we need, as doctors, is to recognize the unanswerability of these questions and at the same time the vital necessity of embracing them.

I wrote my senior thesis on the early years of the AIDS epidemic in the US, focusing on the experiences and responses of gay men in particular. (I worked with an incredible US historian Sara Dubow.) I read a lot of patient memoirs, studied the AIDS Quilt and its role in collective memory, and examined artistic representations of Kaposi’s sarcoma. My take away from the project was that illness isn’t fundamentally biomedical with social overlays, but rather a fundamentally social and biological phenomenon. The two simply can’t be separated.

CTS: What Twitter chats have you followed or participated in that might have inspired this?

CMF: I’ve been peripherally following the #womeninmedicine (Sundays 9pm ET) chat. That’s what introduced me to twitter chats. And though I’m not an active participant myself, I’ve seen the sense of community it’s created and how empowering it has been for so many women. The internet gets a bad reputation. A place where people go because they can’t face the real world. But the internet can be a force for good. It creates space to say honest, vulnerable things you maybe can’t share in your normal environment. And it allows connections between people who need each other but are often isolated from each other, whether it’s women in medicine or folks with disabilities.

CTS: What has surprised you most about the response to your initial tweets?

CMF: About the chat? I was so surprised people are so interested! I really just tweeted the initial idea as a whim. I really hadn’t thought it through. But then there was so much interest, I thought maybe I’d touched a nerve, identified some kind of gap in people’s experience with healthcare. Maybe. So I’m taking it on as an experiment. We’ll see how it goes!

------------

The two pieces of work that will be discussed at the first #MedHumChat will be “Practicing Medicine Can Be Grimm Work” by Valerie Gribben and “Intensive Care” by Jane O. Wayne.



I strongly encourage the online #hpm community to come out and support this first #MedHumChat January 2nd at 9pm ET. You can find out more by following @MedHumChat and @colleenmfarrell)

Christian Sinclair, MD, FAAHPM is the editor-in-chief of Pallimed, co-founder of #hpm chat, and palliative care physician at the University of Kansas Health System. When he isn't writing for Pallimed, you can probably find him updating one of several social media accounts to help advocate for hospice and palliative care.

Tuesday, January 1, 2019 by Pallimed Editor ·

Tuesday, September 5, 2017

How HBO's The Leftovers Parallels Our Work in Palliative Care

By Shayna Rich and J. Maggio


The HBO show The Leftovers has a deceptively straightforward science fiction premise: What happens to people left behind after a Rapture-like event? The Rapture is an apocalyptic event prophesied in the New Testament where people chosen by God disappear into Heaven. In the show, roughly two percent of the world’s population--about 140 million people--mysteriously disappear in an instant. Unlike the popular Christian book and film series Left Behind, The Leftovers is agnostic to the cause of the sudden departure. Some characters believe it was the Christian Rapture, but other characters disagree.

The show never offers an explanation. By using the second-person narrative style, the show revels in the ambiguity of the departure. This ambiguity reflects the way the characters process the event itself.  Was it a scientific or a spiritual event? Why did their loved ones leave? Why did the remaining stay? What does it mean? Where did they go? Whereas pulpy fiction would dwell on that last question--where did they go--The Leftovers is brave enough to tackle the bigger issue: What does it mean? The series is about people trying to find meaning in their confusion, grief, and loss. It occasionally leaps into sci-fi tropes, but it never forgets its mission to examine a world filled with seemingly random and meaningless loss. Since the show is rooted in its desire to find meaning in the context of loss, the viewer is forced to grapple with the power of loss.  Given this theme, The Leftovers often struggles with the same question that we do in palliative care-- how do we help people cope with grief?

Every episode of The Leftovers focuses on one character and it shows how that person copes with loss, either past or anticipated, and struggles to find meaning. Characters ask “Why did this happen to me?” And much as it is for a dying patient, the answers vary. One character, the long-suffering Reverend Matt Jameson, compares himself to Job, a Biblical character who is continuously tested in his belief in God with numerous trials. Matt and other characters insist that God must have purpose in their suffering. Some lose faith or blame themselves. Some even join a cult. But all prefer the certainty of an explanation over the abyss of the unknown. For example, Matt Jameson talks to a man claiming--with some credibility--to be God. Matt wants answers! Yet he struggles to find meaning, even in his conversation with “God.” Likewise, in our work as palliative clinicians, we see the search for meaning every day. Patients seeking a reason for why they were diagnosed with a serious or terminal illness may struggle with their spirituality and their belief in God. Patients often blame themselves if they cannot find a definitive cause of their illness. They may ask us if this happened because of their diet, their smoking habits, or their genes. Patients want a reason, a story to determine a meaning for their suffering.  Regardless of the story, any reason is always more satisfying than not knowing why you or a loved one is dying.

Like the narratives patients often impose upon their illness, The Leftovers is about the stories people tell to make sense of loss. For most people, it is unsatisfying to view the world as a set of unconnected, random events, and evidence shows that people process the world with narrative. The show focuses on how people choose which story to tell, how they treat others’ stories, and our willingness to impose a story on our lives even if it conflicts with logic, experience, or life events. Nora, a character whose husband and two children all disappeared, struggles with the feeling that she does not want to invent a story for what happened unless it is scientifically accurate. The finale of The Leftovers ends with Nora stating “I knew that if I told you what happened that you would never believe me,” followed by another character responding “I believe you.” Her willingness to accept that others can believe her story without proof, represents her growth over the course of the show. Similarly, in palliative care, much of what we do is provide a sounding board for stories. We listen to patients and family members tell stories of how they were told about their diagnosis, what treatment has been like, and what they have been going through in hospitalization. We encourage our patients and families to do life review and make meaning from their lives by telling stories. And much of the support we provide takes the form of listening and believing their stories. The Leftovers emphasizes the value of that support, especially when the truth is unclear or ambiguous.

Cultural critics examining The Leftovers grapple with this ambiguity of truth in their reviews. The show also gives critics permission to explore their own experiences of loss.  Even normally stoic critics like Alan Sepinwall open up about their personal lives and how the show shaped their personal grief. Critic Matt Zoller Seitz’s review of a season 2 episode discussed how The Leftovers connected to his feelings of loss as a widower. Seitz's article even inspired the show’s co-creator Damon Lindelof to write a subsequent episode dealing with grief, loss, and belief in God.  Most beautifully, critic Mo Ryan's article "'The Leftovers,’ Life, Death, Einstein and Time Travel" connects The Leftovers with her complex feelings toward her dying parents, especially her mother’s death from Huntington’s Disease. It has been shared through social media, causing many tears.

The Leftovers not only echoes the concerns of our patients and their caregivers, it also actively helps viewers process their own losses. It is a profound discussion of loss and pure grief. As with much of our work in palliative care, though, it is leavened with humor. The Leftovers is the type of show where Matt Jameson, dying of cancer, argues about suffering with a character calling himself “God,” but it is also a show where he watches "God" be eaten by a lion. Like most art works asking "big" questions, The Leftovers revels in both the wonders and terrors of the mysteries of life.

Shayna Rich, MD, PhD is a doctor who just completed her palliative medicine fellowship and is starting work at Haven Hospice in Lake City, FL. J. Maggio, JD, PhD is her husband, political science professor, and a passionate aficionado of the philosophy of pop culture.

Tuesday, September 5, 2017 by Pallimed Editor ·

Sunday, July 26, 2015

The Art of Dying Well (Ars Moriendi)

by Amy Clarkson

In the success driven society that we live in, I’m surprised there is so little out there about a successful dying experience. There are hundreds of books about how to be a successful parent, a successful spouse, a successful employee or employer. There are success how to’s for education, healthcare, businesses, nonprofits and churches.

Likely, this absence of material about successful dying comes from the link of success to achievement. No one feels confident linking death with achievement. However, what about the idea of dying well? Is this something individually or culturally we should strive for?

Dying well sits more comfortably with us, as we can generalize a bit more about what dying well means. Usually it’s when there is an absence of suffering, when the timing coincides with loved ones presence, when symptoms are controlled and the environment is peaceful; things that at first glance seem out of the control of the person who is dying.

While we may hesitate to discuss what dying well means, historically this was not so. In the 1400’s at the behest of the Roman Catholic Church a booklet was published called “Ars Moriendi” (The Art of Dying) and was the quintessential book on preparing to die, and dying well. It was widely circulated, with over 100 editions and translations into most European languages.

The book spiritualized dying, describing five temptations people dying face. Those temptations were lack of faith, despair, impatience, vanity and greed. The way to die well, then, was to fight these temptations with their opposites. Dying well meant having faith, hope, patience, humility and generosity.

In the 1400’s the availability of medications for symptom management was non-existent. This booklet served to place reason for many of the experiences people witnessed in the death of a loved one. Without an understanding of terminal delirium and restlessness, it was easier to claim impatience as the cause and pray for patience.

In our modern day, medications and scientific understanding help us recognize and treat the physical aspects to aid in dying well. There is more, however, that may be in our control than we’d like to think.

Suffering, despite what we may believe, is not an easily medicated symptom. Since suffering originates from the mind, from experiences, and specifically beliefs and thoughts about those experiences, the control rests solely on the individual. To die well, without suffering, may incorporate some of the very things this 600-year-old book spoke of.

I have seen despair resolve when the focus of regrets moves towards the hope of resolution. I have seen vanity melt away with the courage to humbly ask for forgiveness. I have seen the suffering that stems from the greed and self- focus of ‘why me?’ disappear with a shift to gratitude for the life one has lived.

What does it mean to you to die well? It’s probably too uncomfortable to equate dying well with successful dying, but let’s at least be aware that some of the suffering we all want to avoid at the end can be dealt with while we are living.

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.

Sunday, July 26, 2015 by Amy Clarkson ·

Tuesday, July 21, 2015

Film Review: Thank You for Playing

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.

**Warning: Spoilers ahead**

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

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

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"

Tuesday, July 21, 2015 by Pallimed Editor ·

Wednesday, April 30, 2014

Prison Terminal: The Last Days of Private Jack Hall

Until I watched the documentary prison terminal I had not given much thought to what the end of life is like for a prisoner serving a life time sentence.  The Prison Terminal film was nominated for a 2014 Academy Award in the category of Documentary Short Subject and it is currently being shown in the channel HBO. 

Filmmaker Edgar Barens transports us to the inside the Iowa state maximum security prison recording how the terminally prisoner Jack hall lives his final 6 months (even his last breath). As the film evolves we meet 82 year old Jack Hall who was once a decorated World War II veteran who fought in battle and was a prisoner of war. He spent 21 years in prison of which the last 12 where in the infirmary wing.  Jack Hall’s youngest son had problems with drug use and committed suicide.  Hall was serving a life sentence after being convicted for killing his late son’s drug dealer.  When we meet him he is a debilitated man who has struggled with PTSD, tobacco and alcohol problems and who is struggling with COPD. He is aware of the short time he has to live and is resigned to die in prison:
 “I’m going to get out of here one of these days… in a box” Jack Hall

Jack Hall has the fortune of being in one of the few prisons with hospice services.  They have two hospice rooms that look similar to a standard inpatient hospice unit room. The rooms have been fully decorated with donations and furniture built by prisoners.  Hall has an interdisciplinary team with a nurse, doctor, social worker, chaplain who meet and develop care plans like any outside prison hospice patient would.  Prison hospice is different in that security is an integral part of part of his team. 

There are three inmate volunteers (Herky, Glove, and Love) who are taking care of Jack Hall.  These inmates are murderers serving life sentences in prison.  They keep Hall company, they bathe him, put lotion on him and they become their friends and caregivers. Serving as hospice volunteers for these inmates is rewarding and gives them a sense of purpose:
“When you find yourself doing a life sentence, the thought of your death comes to mind. So when the prison administration started looking for guys to do volunteer work in the hospice program I said sign me up.” Glove
“When I started hospice I thought it would be about what I could give to the patient or what I could do for the patient to make them feel better. But when you do when you do what you do; the feeling you get back from then you can even describe it. I get the feeling in the inside that for once I’m somebody that nobody thought I could be” inmate hospice volunteer

Jack Hall and inmate volunteers at bedside
 
Like many hospice patients Jack Hall has some unfinished business. Hall says goodbye to his friends, and establishes a relationship with his older son (who turned him in for the crime), and even manages to quip a goodbye to his doctor “see you in hell”.

When Jack gets very weak he goes in to the hospice room, his symptoms are managed and the volunteers are always by his side.   He dies and he is taken out of prison in a bag.  Due to his murder conviction he is no longer deserving of military honors, a military funeral or burial in a national cemetery.

What would have happened to Jack hall if he had been in a prison without hospice?  

He probably would have died alone shackled to his bed and struggling to breathe in his cell.

There are 1,800 prisons in the U.S. and only 75 have a hospice program and 20 of those run by inmates.   In the year 2025 it is estimated that 20% of the prison population will be elderly. These inmates have committed terrible crimes for which they are paying by serving time in prison. They are dying with many chronic conditions and should be treated humanely at the end of their lives.
Prison terminal is being shown in prisons; I hope it leads to more prison hospices being established.

I suggest you read the prison terminal press kit to learn more about how the documentary was made and more details on the people shown in the movie.

you can learn more  recent news by following the social media sites for prison terminal:
If you are interested in watching a previous documentary that Edgar Barens  did over a period of two weeks in the Angola prison hospice you can watch it on Youtube:




References:
1.HBO documentary Prison terminal the last days of private Jack Hall accessed on 4/16/2014 at http://www.hbo.com/documentaries/prison-terminal-the-last-days-of-private-jack-hall#/
2.Press kit and press contacts for the film Prison Terminal: The Last Days of Private Jack Hall. Accessed 4/16/14 at www.prisonterminal.com/prison-terminal-press-kit.html
3. John Walters. HBO Documentary 'Prison Terminal' Shows the Human Side of Dying in Prison. Published by Newsweek 3/31/14 Accessed on 4/16/14 at http://www.newsweek.com/hbo-documentary-prison-terminal-shows-human-side-dying-prison-238972
4. Bruce Reilly.  Terminal Illness in Prison.  Published by the LA Progressive on 03/27/2014 Accessed on 4/16/14 at http://www.laprogressive.com/terminal-illness-in-prison/
5. Human Rights Watch  US: Number of Aging Prisoners Soaring published 01/26/2012  accessed 4/16/14 at http://www.hrw.org/news/2012/01/26/us-number-aging-prisoners-soaring
6. S. 923 AND H.R. 2040, TO DENY BURIAL IN A FEDERALLY FUNDED CEMETERY AND OTHER BENEFITS TO VETERANS CONVICTED OF CERTAIN CAPITAL CRIMES accessed on 4/16/2014 at http://commdocs.house.gov/committees/vets/hvr070997.000/hvr070997_0.htm
 
Follow Dr. Jeanette Ross on twitter @rossjeanette


Wednesday, April 30, 2014 by Jeanette Ross ·

Sunday, March 2, 2014

"Prison Terminal" Documentary Nominated for OSCAR

I’m know I’m not alone in pining for in-depth portrayals in mainstream culture of the complexities in caring for people near the end of their lives.  Working in palliative care and hospice allows us to witness (and sometimes be part of) wonderful stories of love, forgiveness and redemption.  Stories that would seem to fit in any high quality film or TV show come naturally in our field.  So tonight when the Academy Awards are being handed out, keep an ear out for Prison Terminal: The Last Days of Private Jack Hall.  It may only be mentioned right before a commercial break, or not at all on the telecast, but it is something any hospice advocate should know about.


This film was featured in the early stages here on Pallimed by Dr. Holly Yang back in 2011 when Edgar Barens was still developing financing for the film.  Although the initial Kickstarter did not reach the funding goal, Mr. Barens kept at it.  The Oscar nominated film for Best Short Subject Documentary features the story of Jack Hall who is confined at Iowa State Penitentiary for life.  With the aging prison population, hospice prisons are becoming more common, the most famous (if you can call it that) is Angola Prison Hospice, which was featured in another film by Edgar Barens.  


The film has been getting some high praise for a intimate look into the tough subject. While a few prisoners do get parole or compassionate release if they are dying, the chances are much greater that they may die in prison if they are in for life or a very long sentence. I realize many would think there is not problem with someone dying in prison as part of the ultimate punishment for the crimes they have been sentenced for. But when you watch films like Prison Terminal or the other two documentaries by Mr. Barens on the subject (Angola Prison Hospice: Opening the Door and A Sentence of Their Own), it can really make you think about the human condition and the role of prison and redemption in challenging new ways.

You can catch the film on HBO at the end of March and I really hope you do, so we can have a great discussion about it afterwards here.

Find more about the film and the filmmaker, Edgar Barens, at the Prison Terminal Website, Facebook, and Twitter (@prisonterminal)



Sunday, March 2, 2014 by Christian Sinclair ·

Tuesday, September 24, 2013

No More Excuses: Having tough talks in pediatrics




“What words can be uttered? Your turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room – the best boundaries of you are the boundaries of it.” – Shirley Jackson, from “People Like That Are the Only People Here,” in Birds of America*
*             *             *
“Doctor, you might have children just like anybody else. Would you want somebody to give you false hope or tell you, ‘OK, your child is gonna be fine,’ and you know she’s not?”  - Parent feedback (Meert et al)

*             *             *
“Barriers to resuscitation status discussions were ranked according to the percentage of physicians and nurses who identified the issues as often or always a barrier. The top 3 barriers were unrealistic parent expectations (39.1%), lack of parent readiness to have the discussions (38.8%), and differences between clinician and patient/parent understanding of the prognosis (30.4%).”  - Sanderson et al. 
*             *             *
I first read Shirley Jackson’s short story “People Like ThatAre the Only People Here: Canonical Babbling in Peed Onk” from her collection of short stories Birds of America* as a college freshman. At that time, nary had a thought entered my mind about a career in medicine, and I read the book during my coursework to obtain that ever so useful creative writing degree. The story was used again in a course I took later in college, and, again after I changed paths and went into medical school. It just kept showing up, and I kept reading it. The strange thing was, though, that I would forget I had read it until a few sentences in, when I would start to think, “Huh, this sounds very familiar…”

I’m sure that the 18 year old version of me who read the story took something from it far different that any of the other versions of me who have read it. As it is now, being a mom as well as a physician, I find it almost impossible to get through because it is too real and too scary. Although “fiction,” it is a scene that happens every day, in which moms like me, with kids like mine, and doctors like me, with patients like mine, find themselves abducted by that “little country.”
So when I sat down to write about Amy Sanderson and colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I had read something before that would tie in with this study. It was another case of “Huh, this sounds familiar…” I knew there was another angle to this, so I dug through my file folders until I can to the one that said “Parental Perspectives” and another one labeled “Provider Perspectives.”

Both are very full of articles with frayed edges; and in these folders, a dichotomy.
In one folder, articles filled with attempts at identifying the needs of parents by culling through their experiences.  Common themes present themselves: losing a child is incredibly difficult – whether that child was a 17 week fetus or a 17 year old football star; there are no ways to be prepared for the loss of a child; honest and straightforward information and compassionate communication from doctors and nurses is helpful and necessary. In short, parents what to know what is going on, and they want to be able to have the information, even when there is prognostic uncertainty, so that they can be active participants in the care of and decision making for their children.

In the other folder, articles filled with identifying how pediatric care providers handle communication during times of critical and/or terminal illness. These pieces consistently find similar issues with communication between provider and parent/decision-maker. In this particularly lovely Pallimed piece from not so long ago, the author (okay it was me), discusses some of the barriers that seem to keep pediatricians from having the tough conversations. That post particularly pointed out studies citing lack of confidence in these communication skills, a lack of training in these skills, and a concern about prognostic uncertainty in pediatric patients’ disease processes as key barriers.
There is another common barrier theme that arises from the studies of the providers, though. It is one that, in light of what we see from parent surveys and studies in which parents are almost begging for more information, may surprise you.

Pediatricians give, as one of the most common reasons for NOT engaging in goals of care, end of life, or code status conversations a “lack of parental readiness” or “lack of parental acceptance.” There are worries about “unrealistic parent expectations,” as well as “clinician concern about taking away hope.” When I read these reasons, and also think about the combined lack of education and training, as well as lack of confidence, it makes sense how these crucial conversations become avoided. If you don’t feel like you know what you are doing, you are afraid of messing it up, and also afraid of upsetting or having conflict with parents, then pausing to ask “what are we doing and why? And is this the right approach or your child?” takes a backseat to the pressing issues of the vent and the drips and the day to day medical management. Just because it is an understandable position doesn’t make it right.
At the same time clinicians are grappling with feeling unprepared and uncertain of how to communicate, we have parents saying, “we need information from our child’s care team so that we can know what is going on, have time to process it and understand it, and be able to feel that we are helping make to most appropriate decisions for our child.” They want information given in smaller portions, in lay terms, on a regular basis.

As a parent is quoted in a study by Elaine C. Meyer and colleagues, “Listen. Answer all questions. Give all information—parents can handle it. What we cannot handle is not knowing what is going on. If something is going wrong, tell us.”
Is anyone else getting that sinking gut feeling?

Back to the Sanderson’s study and article. Sanderson and her colleagues David Zurakowski and Joanne Wolfe wanted “to identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients.” Literature exists for adult populations, but this was the first specifically targeted at the pediatric realm.


What they found is disconcerting. Although about 2/3 of those surveyed -- physicians as well as nurses-- stated that “a DNR order indicates limitation of resuscitative measures only in cardiopulmonary arrest,” the other 1/3 “considered the DNR order to be the threshold for the limitation of treatments not specifically related to resuscitation.” Finally, about 6% of those surveyed “believed that a DNR order implies that only comfort measures are to be provided.”
Let that sit for a moment.

I’m sure most of us have had the experience of being called on a patient and hearing something that begins, “Well, she’s a DNR, but I went ahead and checked her vitals anyway and she has a fever of 102.” The implication of that phrasing, or variants of such phrasing, are that since the patient “is” a DNR (it’s a new species, look it up) that routine evaluation and management of non-cardiac arrest scenarios is to be discontinued. I cringe when I hear this call, and cringe more reading the misguided implications of the DNR order in adult, and now, in pediatric literature.
Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was found in Sanderson’s study, perceived to affect care beyond response to cardiopulmonary arrest.

How does this happen? How does a DNR order become a signal of “comfort care only?” Or lead to an assumption that it might include “limitation or withdrawal of diagnostic and therapeutic interventions?” Theory: Given the discomfort that pediatric providers have with communication near the end of life, but also their desire to protect their patients from what might be seen as a futile intervention, a conversation about a DNR order might be a proxy for a “bigger” conversation. It becomes a sort of substituted goals of care conversation, in which decisions are made and judgments potentially assumed, but in which that critical element of mutual understanding between all parties involved remains lacking.

There has been a growing demand for increasing education aboutcommunication at the end of life and palliative care to pediatric residents, but it is slow to gain steam in training curriculum already tightly packed to fit into three years. And this does little to address the needs of practicing pediatric providers, doubly frightening since they are the ones training the future providers. It is a need that, no matter how far we advance in the world of medicine, is going to remain. Sad as it is, difficult as it is, unfair and tragic as it is: children are going to die. These children and their families deserve care providers who can as deftly handle end of life care as they do handling vaccination schedules or chemotherapy regimens or DKA.
As a parent, the idea of something medically horrible befalling one of my children is almost too much to bear. The idea that I might be left in the dark about his condition or prognosis and not have the information I need to make the best decisions for my child and our family is another layer of suffering I don’t think I could tolerate. When the unthinkable happens and a parent is kidnapped into that “cellar room” that Lorrie Moore described,  she needs to hear voices from the outside telling her what is going on throughout her time in the cellar, not just when it is about to be flooded or set ablaze. And though no one can truly get into that cellar room with her, they can open windows into it, hold a hand through it and promise not to let go.  

For those providers who don’t feel they can do it, there are providers out there who can and will. There are those of us passionate about pediatric palliative care here to guide and support our professional colleagues just as much as we are here for the patients and the families.  We know that sometimes the providers feel like they are in their own cellar room, and we care about our professional colleagues as well as patients and families. We can’t help you if you don’t let us, though, and even though it can be hard to ask for help, consider the alternative. Consider the patient and her family. Consider that perhaps after having a palliative care provider there with you a couple of times, you will be able to feel confident and comfortable enough to handle the next one on your own. And then maybe teach others how to do the same…just like an invasive procedure in which you “see one, do one, teach one,” the end of life or advanced care planning or code status conversation(s) are skills that need to be honed and practiced…and then TAUGHT.
The burden isn’t just on pediatricians to ask for help from their palliative care colleagues, though. For those of you adult palliative care providers out there, don’t think you can weasel your way out of this: you are needed as well, and yes, you CAN handle working with young patients.  Just as pediatricians shouldn’t opt out and say “but I’m a pediatrician, I don’t do death,” you adult HPM docs don’t get to say, “But I’m an adult palliative care provider, I don’t do kids.”  We’ve all got to pitch in here.
Really and truly, you can do it. And if you run into a question or a problem along the way, guess what, the pediatric palliative care community is pretty small, and we are generally very nice,  and we LOVE to help our colleagues. You can email us (I’m pallcareriegel@gmail.com or eriegel@kumc.edu) or call us or hop onto our listservs. AAHPM has a Pediatrics SIG. CAPC has an entireforum board for pediatric palliative care issues. The American Academy ofPediatrics has a SIG for pediatric palliative care. The NHPCO has a section onpediatric palliative care. We live on Twitter as #PedPC.  I’m missing other routes and organizations here, so if any one reading this wants to add to the comments, please do. Basically, we want to shout “Help us help you!”
If we can work together, everyone will stand to benefit.

ResearchBlogging.orgSanderson A, Zurakowski D, and Wolfe J (2013). Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics PMID: 23979224



Other cited works:

Beach, M. C., and Morrison, R. S. (2002). The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society, 50, 2057-2061. (Open Access PDF)

Longden, J. V. (2011). Parental perspective of end-of-life care on paediatric intensive care units: a literature review. Nursing in Critical Care, 16(3), 131-139.

Meert, K. L., Eggly, S., Pollack, M., and Anand, K. (2008). Parents’ perspectives on physician-parent communication near the time of a children’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 9(1), 2-7. (Open Access PDF)


Durall, A,, Zurakowski, D., and Wolfe, J. (2012) Barriers to conducting advanced care discussions for children with life-threatening conditionsPediatrics, 129(4), e975-e982 (Open Access PDF)

Photo credits: 
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal 
Child: Emily Riegel

*Links are Amazon Affiliate Links.  Any proceeds from sales using these links support Pallimed outreach efforts.  

Tuesday, September 24, 2013 by Emily Riegel ·

Wednesday, June 26, 2013

Experience Cancer Through a Video Game

(Today we have our first post from Meredith MacMartin (@GraniteDoc), a palliative care doctor in New Hamsphire, who referenced this video game in a Tweetchat several weeks back. I'm pleased to welcome her to Pallimed and I know you will enjoy this thought provoking post. ~ Sinclair)

My brother-in-law Dennis is seriously into video games. He’s a designer and programmer who has worked with NASA on using video game technology for training and community outreach purposes, and who is passionate about expanding the use of gaming for entertainment and especially education. I’ve had many conversations with him about this, but always came away thinking something along the lines of “My work is with people, and you can’t translate interpersonal dynamics into a game”.

I just couldn’t see how gaming could have any application in the palliative care world, which grapples not only with strong emotions but also with high-level decision making that is deeply personal and specific to each patient, family, and illness. How could a video game create anything like my daily work experience?

And then I read this article about That Dragon, Cancer. This is a video game currently in development, describes on its website as:
... an adventure game that acts as a living painting; a poem; an interactive retelling of Ryan and Amy Green’s experience raising their son Joel, a 4-year-old currently fighting his third year of terminal cancer. Players relive memories, share heartache, and discover the overwhelming hope that can be found in the face of death.
The review written by Jenn Frank (@Jennatar) at Unwinnable is itself a wonderful piece of writing. And it described a scenario utterly familiar to me, which was itself disconcerting. The section of the game she describes takes place in the ICU. You, the player, are there with your young son. She writes:
“And wow, you really got every detail right! I can’t believe it! There’s the armchair. And it is! It is always too small! And rubbery. Here’s the phone right next to it, of course. The bed is over there. The bathroom is a room attached to this one, and then there’s another sink counter way over here, where you religiously wash and sanitize your hands. There’s the salmon-pink, kidney-shaped basin sitting on the counter just to the sink’s left: maybe it’s supposed to be a bedpan, but we always used it for vomit instead. Everything is just right, just the way I remember it.
And then there are those great big windows – there are always those great big windows – and if it weren’t for those big picture windows, you’d never know the time of day, since the ICU is always so dark. That moment really struck me, seeing out those windows and realizing it’s still daylight.”


This could be my ICU, where I have spent many hours (daylight and otherwise) in front of those plate glass windows, both as a resident making frantic adjustments to drips and vent settings, and as a palliator working to be the only non-frantic entity in the room. Her description of the physical setting makes me catch my breath: what else did the game designers capture? Jenn Frank, the reviewer of the game, goes on:
“The very first time, my mother was supposed to die. She was supposed to die, and we succeeded instead. She survived several times after. For just under a year I was needlessly cavalier. I do remember what it felt like to be the hero. I also remember what it felt like to get so, so tired, which was a long time after I’d stopped being afraid.”
This stops me in my tracks. What she describes is likely immediately familiar to all of us working in this field: the false hope of “success”, the fatigue, the fear. The creator Ryan Green (@RyanGreen8) describes the game as primarily about hope, something that seems so slippery to me in the ICU. I start thinking about the audience for this game. It has always seemed to me that the caregiver experience in the ICU must be excruciating regardless of the outcome; who would want to relive that? 

But then it occurs to me that perhaps the real value of That Dragon, Cancer is not for those who have survived the dragon, but those who have yet to face it. Or those who have just learned of the existence of the dragon in their own life. If you could prepare yourself for the hardest thing you will ever go through, if you could practice it by experiencing a fraction of it ahead of time, would you want to? Would it help?

***

A few weeks ago, I sat in the conference room of our ICU, across from a family whose mother was dying in the room next door. They were weighing whether to continue aggressive treatment or to withdraw life support and allow a natural death. The patient’s daughter and DPOA said tearfully “I think I know what my mother would want, but I’ve never had to make this kind of decision before. It’s not like you get to practice these things.”

In that moment, I couldn’t help but think of the video game, of the artificial ICU in the game and the emotions it was able to evoke in one who had experienced the real thing. And I couldn’t help but think, what if this family had practiced this hardest thing before? Would it have helped? I don’t know the answer, but it has shown me that perhaps interpersonal dynamics are more translatable to a virtual reality than I had supposed. What other digital tools might be out there waiting for us?



This post is part of the Arts and Humanities section of Pallimed covering all types of media.  Click on the logo above to experience great writing on the intersection of culture and medicine.

Wednesday, June 26, 2013 by Meredith MacMartin ·

Sunday, May 26, 2013

Memorial Day

The exact origins of Memorial Day are not exactly agreed upon. Many cities claim to be the founders of this holiday. The tradition, however, dates back to Civil War times. At one time Memorial day was known as Decoration Day, as it was the day families and friends of fallen Civil War soldiers would choose place flowers and "decorate" the graves.

The first official Memorial Day was May 30th 1868, after the day was declared by General John Logan, commander of the Grand Army of the Republic (a veterans' organization). The holiday was adopted by Michigan and New York and then by all the Northern states through the late 1800's. The Southern states had there own days they observed and did not recognize this holiday until after WWI (several Southern states still have a separate Memorial Day type holiday to honor confederate soldiers). Apparently the date, May 30th was chosen as it was not the anniversary of any battle.

At first the holiday was just to honor the Civil War dead. After WWI, Memorial Day changed to honoring all of Americans who died fighting in any war. Now it is often seen as a day to remember all who have died. (I remember going to the cemetery to decorate the graves of family members on Memorial Day when I was young.) In 1967, the name of the holiday was officially changed to "Memorial Day" and in 1971 the National Holiday Act changed the date of the holiday to the last Monday in May, creating a very convenient 3-day weekend. There has been for several years a push to move Memorial Day back to May 30th in order to try to give some meaning back to the day (so it's not just the long weekend when the pools open).

The top photo is from Arlington National Cemetery. Every year around Memorial Day, the 3rd U.S. Infantry Regiment or The Old Guard, in a tradition called "Flags In", places small flags in front of all graves in the cemetery.

The Fredericksburg National Cemetery hosts an annual Luminaria each year for Memorial Day. Approximately 15,300 candles are placed by volunteers on each of the graves (80% of which are unknown soldiers).

I have often wondered about the significance of the red flowers being given out for donations around this time every year. Inspired by the poem, "In Flanders Fields" (poem below) by Canadian WWI veteran and poet John McCrae, the Veterans of Foreign Wars take donations for their "Buddy" Poppy every year around Memorial Day. Theses poppies are assembled by disabled and needy veterans. Since 1922 this program has been raising money for veterans and their families through the poppies.

In Flanders Fields
In Flanders fields, the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below...
We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved, and were loved, and now we lie
In Flanders fields...
Take up our quarrel with the foe:
To you from failing hands, we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields...
Originally posted to Pallimed: Arts and Humanities

Sunday, May 26, 2013 by Amber Wollesen, MD ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint