Wednesday, June 26, 2013
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?
“... 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.”
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 ·
After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of S’s death triggered a process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. S was sent home with a ventricular assist device (VAD) long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours S was back in for her heart transplant.
Surgery went very well, and S was out of the ICU with few complications. Yet, once S was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.
Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.
This was a process that was not resolved as in our modern media. The resolution was assisted by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, her family members who realized her mortality and took ownership of her suffering and their contribution to the dysfunction in their household.
In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as smiling demonstrating 'No Pain' to 10 being 'Unbearable/Excruciating Pain'. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, whatever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”
While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.
1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999
2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine. Volume 7 No 2. March/April 2009. (Open Access)
by Christian Sinclair ·
Monday, June 24, 2013
Rolling into work this morning, NPR reported on a radical change in organ donation policies which could profoundly change how palliative care is perceived and how families and health care professionals make those very challenging decisions at the end of life. At the heart of the effort is an attempt to increase the number of organ donors of course but the ethical question is in how to achieve that noble goal. Among the changes under consideration is the ability for hospitals and organ procurement organizations (OPOs) to make their own policies on how to approach families and patients about organ donation instead of following national guidelines.
I've have worked with OPOs in the hospital setting and have had overall some very good professional and ethical experiences. But allowing too much individual variation could lead to abuses of the system which would negatively impact patients and families. Why wouldn't their be best practices from which all the sites could rely on? To go from national standards to individual policies that could be unduly influenced seems to be a regression of ethics.
There must always be a clear line between the clinical team treating the patient and the team with the skills and ability to harvest organs from a deceased patient. That has been a long held standard of transplant ethics and is reinforced in the story by a bio-ethicist, Dr. Stuart Youngner. In the audio version of the story (not the print version) Dr. Youngner also mention that in one hospital he works with the organ transplant team tries "to be introduced to families early, not as organ procurement organizations but as end-of-life care specialists."
Hello! Alarm bells?! Palliative care teams need to be very aware of this potential and need to talk to OPOs and their transplant teams about this potential blurring. We need to have cooperation and discussion to make sure we are collaborating but again a firewall is needed to protect the patients currently under our care. I think there are several ways hospice and palliative care can work with OPOs. National Healthcare Decisions Day and advance directives for starters? Interestingly I could not find anything more than this NPR story about the UNOS meeting today and tomorrow. There is an open session and I for one would be very interested in the outcomes.
If you have experiences as a palliative care professional (hospice or hospital) with OPOs, please share them in the comments below.
After listening to the article I also have two tips for any journalists covering stories like this:
1. Avoid phrases like 'increasingly popular' when describing organ transplant methods. This isn't a homecoming contest.
2. Do not say 'discontinue care.' Care is never stopped. We always keep caring. Technology and treatments can be stopped, but never caring.
Monday, June 24, 2013 by Christian Sinclair ·
Thursday, June 20, 2013
Thursday, June 20, 2013 by Emily Riegel ·
Friday, June 14, 2013
by Christian Sinclair
I drove from Kansas City to Oklahoma to bury my father in a Veteran's Cemetery two years ago this summer, not long after Father's Day. I have not really thought much about that day in the following two years. Which now feels kind of strange. Shouldn't I be think about it like a normal grieving adult child?
It occurs to me now as I anticipate my wife and kids to celebrate my tenure as a father, that days like these are also memorial days for so many people. Although I have talked with many people who have also lost one or both of their parents, it never really occurred to me as it is this week, the profound impact of what it means to 'celebrate' Father's Day without your father.
Friday, June 14, 2013 by Christian Sinclair ·
Tuesday, June 11, 2013
|David and Debbie relax before the|
first chemo treatment
(Photo Credit: David's Videoblog)
We experimented with the origin story back in 2010 with an entry from Dr. Pam Harris sharing her origins story coming from Physical Medicine and Rehabilitation. Today we are re-debuting the Pallimed Origins with a new format: audio!
The first new-installment kicks off with Debra Parker Oliver, a professor and researcher at the University of Missouri with a background in social work and hospice management. I interviewed her in early May 2013 in Kansas City, MO during a meeting with her research colleagues. Many of you are familiar with Debbie Oliver and her husband David from their moving plenary session at the 2013 AAHPM/HPNA Annual Assembly or from their video blog on their journey through health care. Lyle Fettig wrote a great review about the plenary back in March.
Take a listen to our interview with Debbie Oliver and please give us feedback on the interview, format and new series.
(A note on this series: We are using Soundcloud to host the audio files for Pallimed Origins (click here if you cannot find the embedded audio above). The audio files can be downloaded for offline listening as well. We already have a few interviews in the can, but I am always looking for more interesting stories, so if you know anyone please make sure to contact firstname.lastname@example.org, and we will get them on the list. Any discipline, any background are welcome. Interviews can be done in person, by phone or internet.)
Tuesday, June 11, 2013 by Christian Sinclair ·
Saturday, June 8, 2013
Back in March, the contributors of Pallimed got together for a hard conversation. We were only missing a few people but it was still a sizable gathering at a restaurant late one evening in New Orleans. We have met at Academy meetings before, really to check in with each other and how all of us were doing in our professional and personal lives. But this was a little different. None of us were posting with much regularity for the previous 18 months. Compared to where we were in 2008, 2009, and 2010 we all recognized we had many more responsibilities and working on Pallimed really didn't always fit into our schedule despite the best of our intentions.
But there was a different spark that night, different from years past. This spark was probably brighter because of the darkness from being dormant for much of 2011 and 2012. We challenged each other to not let this great opportunity to fall by the wayside. With the knowledge and wisdom from our schooling and clinical experiences, we recognize there is also a responsibility to share information, to engage in a conversation which can change the world before any one person becomes our patient. Pallimed is a strong platform for sharing and we realized we did not want to just keep it to ourselves, so we are now reaching out to many new voices, including yours.
I'm asking you, whoever you may be, reading this post to join me in walking down the road that leads to awesome.
Do you want your patients to have doctors and nurses who understand good symptom control?
Do you want your community to think differently about how they approach end of life?
Do you have conversations about pain medicine portrayal on TV and film?
Do you wish your parents understood what you do for a living?
See your wishes for the world and the pain you want to relieve through this platform and together we can make a tremendous difference. This site is not about one person alone late at night writing on the website. It is about ten, one hundred, one thousand people alone late at night writing on the website joining in a cacophonous conversation that spreads across the globe to support the good work you do. Supporting Pallimed and other hospice and palliative blogs is about investing in yourself.
Photo Credit: Adapted from 8 by chrisinplymouth under CC By-NC-ND 3.0
Saturday, June 8, 2013 by Christian Sinclair ·
Friday, June 7, 2013
CASE: Mr. K was a 41 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. K had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.
Once Mr. K became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 7 year-old son and 9 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. K with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. K in applying these materials to the conversation he would have with his children.
First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. K to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. K identifying words and concepts about illness and death that his children would understand. Mr. K decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”
Although his message was brief, Mr. K feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. K practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.
The practice helped, but Mr. K still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. K might reassure his children that he’s still going to help them with their homework and read to them every night.
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.
1. Seccareccia D. (2008). When a parent is dying: Helping parents explain death to their children. Can Fam Physician. 54 (12): 1693-1694. (OPEN ACCESS PDF)
2. Rosenheim, E., Reicher, R. (1985). Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Disc. 26:995-998.
3. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider, L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.
4. Sinclair CT. (2012) What is the right age for chilldren to go to a funeral? Pallimed [internet].
Friday, June 7, 2013 by Christian Sinclair ·
Wednesday, June 5, 2013
“We all struggle on how to care for ourselves when we are engaged in our family life and are engaged in our professional lives” Jane de Lima Thomas
“Get started today on doing something you can implement to take care of yourself!” VJ Periyakoil
Wednesday, June 5, 2013 by Jeanette Ross ·