Tuesday, August 25, 2015
The ground is shifting under our feet as our society seems finally to be looking at the nature of human mortality and the way we care for each other…or don’t…as we complete our lives. Zubin Damania, MD aka ZDoggMD is now part of that conversation since the release of “Ain’t the Way to Die” his first not-so-funny medical parody music video focused on how we so many of us die in the hospital in a not-so-funny way. A hospitalist refugee from burn-out at a big academic center, ZDogg continually reinvents himself as an “off-white rap star” with a passion for saying what needs to be said with growing impact.
That doesn’t surprise any of us that have been practicing professionals in palliative care and hospice over the last 35 years. We have done our best to share our perspective and to inform our society. And our society has only just now seem to be paying attention. I sat down with ZDogg for an interview to address a question raised by Atul Gawande in an interview before his plenary at the AAHPM Assembly, “…why the hell aren’t people listening to you?”
Michael D. Fratkin, MD is a palliative care physician and founder of Resolution Care, a unique palliative care practice in Northern California. Resolution Care was featured on Pallimed in Dec 2014.
Tuesday, August 25, 2015 by Pallimed Editor ·
Monday, August 24, 2015
Vermont is the sixth smallest in area and the 2nd least populous of the fifty United States. Medicare data from 2013 show that Vermont had among the lowest hospice penetrance rates in the country along with New York, Wyoming, South and North Dakota, and Alaska. While enrollment in hospice has been associated with improved survival for CHF, colon, lung and pancreatic cancer, improved quality of care for persons dying of dementia, and improved mortality outcomes in surviving widowed spouses, I find knowledge of these research findings to be low. And while a sense of comfort and relief for millions of Americans is provided by hospice every year, it is frequently felt to be a service for the imminently dying.
Since beginning my role as Hospice Medical Director for BAYADA Home Healthcare in Vermont and New Hampshire in 2013, I have spoken with health care providers of many disciplines in the region about why hospice utilization may be so low. Hospice practice in rural and remote areas is captured in population based data that can be broken into counties but is poorly represented in hospice and palliative care literature. Its day to day challenges and successes are learned from actual and shared experience.
This #hpm chat encompasses an international group of participants who bring a diversity of experience to the topic of building high quality and lasting hospice programs in rural areas. My aim is to pose questions that will lead us to common ground for building these programs in order to meet the end-of-life needs of our patients, families as well as hospice clinical and administrative staff.
Questions that will be posed during #hpm chat:
- How is access to hospice care a barrier for patients and families where you live?
- How is the availability of experienced staff a barrier?
- Have prescription monitoring programs or pharmacy dispensing practices interfered with your ability to dispense opioids?
What: #hpm chat on Twitter
When: Wed August 26, 2015 - 9p ET/ 6p PT
Host: Dr. John M. Saroyan (@jmsaroyan)
Follow @hpmchat on Twitter for all the latest on #hpm chats.
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 tweetchat.com, for ease of following.
You can access the transcripts and analytics of #hpm chats through @Symplur.
Image credit: Vermont Hogback Mountain via Wikimedia (CC license)
Monday, August 24, 2015 by Pallimed Editor ·
Friday, August 21, 2015
Hospice and palliative care professionals value honesty. We may be the only people in a patient’s life who speak openly about death and dying. There is no time left for us to speak metaphorically. We do our best to be compassionate when we are direct with our communication. In order to provide the best care possible for our patients, we have to build an open and trusting relationship with them. One might assume that since we are authentic with our patients, they are open and honest with us. We know, though, that this is not always the case. Recently, I wrote about the secrets of hospice patients. This article is a continuation of that thought with a discussion of the lies that hospice patients might tell us.
Before we go on, let's be clear that there is no moral high ground in the suggestion that hospice patients may lie. A lie, according to Webster's Dictionary, is simply "an intentionally false statement." It is my assertion that there are times where patients do make false statements to us, and they have their reasons for not being truthful.
If you are new to hospice and palliative care, you might be surprised to learn that patients might lie. If you have worked in hospice and palliative care for a few years, chances are you are nodding your head as you are reading this, with a recollection of your own patient encounters. I have been thinking about this phenomenon for a few years. As always, my articles are inspired by experiences and lessons I have learned as a hospice social worker.
Why do hospice and palliative care patients lie to us?Perhaps the best way to answer the “why” is to reframe the question. When might hospice and palliative care patients lie? Patients might lie when they do not feel comfortable with telling us the truth. We have not built up trust so that the patient feels we are on their side. Patients may outright lie or they may lie by omission or understate the truth.
Here are some examples of areas of deception:
Current “bad” habitsThere are several reasons why a patient may not be honest to a hospice caregiver about their smoking, drinking or drug habit.
1. Patients expect that their medical provider will tell them to stop what they are doing.
2. There is a fear of judgement/labeling by the medical provider.
3. Patients may not think their habit is the provider’s business.
4. A patient is ashamed or embarrassed by the habit.
5. There may be a perception that a truthful answer will result in an unwanted response from the provider.
Patients are not going to naturally understand why we ask questions about smoking, alcohol and drugs. We ask these questions because these habits can affect their plan of care. All three habits can affect how a patient responds to or metabolizes medication. If a patient is a smoker, we want to ensure that they are safe with their habit, especially if they are on oxygen. Before we ask questions about these habits, it would be helpful for the patient to know why we are asking. If we tell them why we need to know about their habits, we have a better chance of getting an honest answer.
Assessment/visit fatigueIn hospice and palliative care, we are constantly assessing. Every staff member that interacts with the patient is asking the patient questions. At times, the patient gets the same question from different staff members. A barrage of questions can be overwhelming for patients. We need to be mindful of the timing of our visits so that patients have a break in between providers as much as possible.
I had one initial assessment with a patient (Mr. J) which directly followed personal care by the aide and the hospice nurse visit. (Hospice social workers are tasked with conducting an initial assessment within five days, and so our timing can be unfortunate at times.) The patient I was assessing was irritated with his shower because movement hurt and he was in a bad mood when I started talking with him. I could not get a straight, honest answer on any question. He told me he had ten children, when in fact he had none. He refused to tell me what he did for a living. Every other word he said was a swear word. He was not in the mood to talk, and eventually, I gave up trying to win him over and gave him the space that he apparently wanted.
What they really think of us and/or our care
Why am I bringing this up? Because we need to remember that a patient is not always going to tell us directly when they are unhappy about something. Occasionally, one staff member will hear from a patient about their dissatisfaction with another staff member, but I suspect there is more dissatisfaction than we realize. A complaint-free patient does not mean we have a content patient. We need to check in with the patient frequently, and give them the opportunity to direct their care. We do not want to have a situation where a patient is very unhappy and we did not know because they didn’t tell us and we didn’t see it. We need to read body language and we need to read between the lines with what patients say and what they don’t say.
How to build a trusting relationshipHow does one build a trusting relationship with a hospice and palliative care patient so they feel comfortable telling the truth? This would be a great question for the #hpm tweetchat, as I am sure that there are lots of ideas. I do not claim to have all the answers, though I have often been told by patients that I am “authentic.”
Here is what I try to do:
• Ask permission for everything. Are you open to chatting? Do you mind if I take notes?
• Acknowledge the personal nature of questions. The reason I am asking is because…
• Take “no” for an answer. If a patient does not want a visit, I leave.
• Ask for permission to return.
• Be mindful of my nonverbal and verbal responses when a patient self-discloses.
• Normalize patient behavior and thoughts as much as possible.
Please do share in the comments your own best practices for building a trusting relationship for patients.
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW
Image credit: No lies, truth - via iStock
Image credit: Building Trust in Health Care - composite by Christian Sinclair for Pallimed
Friday, August 21, 2015 by Lizzy Miles ·
Monday, August 10, 2015
by Jordan Keen
SM is a 25-year-old female with progressively worsening rhabdomyosarcoma despite multiple rounds of chemotherapy and surgery. She presented to the emergency department with worsening of her chronic tumor-related abdominal pain and new, diffuse pain of the muscles and joints. Family reported she had been experiencing episodes of confusion and hallucinations over the past week. Her home pain regimen of long-acting morphine and as needed oxycodone had been titrated aggressively over the past month in an attempt to control her pain (600mg total daily oral morphine equivalents).
When first evaluated by the palliative care consult service, she was in severe distress. She described severe, 10/10, diffuse pain. On exam there was generalized tenderness of the abdomen, as well as her shoulders, upper legs, and lower back. She was exhibiting myoclonic jerks of her upper extremities every 3-4 seconds. Although she was alert and oriented, she was easily distracted during the exam and required frequent redirection.
Our palliative care team was concerned about opioid-induced hyperalgesia (OIH). Suspicion was high given the paradoxical worsening of her pain despite high doses of opioids and the neuroexcitatory signs and symptoms (myoclonus, confusion, and hallucinations) she was exhibiting. Therefore, it was decided to lower the overall dosage and switch her opioid regimen in an attempt to reverse OIH. Her long-acting morphine was discontinued and replaced with methadone 5mg three times per day. Her as-needed oxycodone dose was reduced from 30mg to 5mg every 4 hours. To control the myoclonus, low dose lorazepam was administered three times per day.
View more cases on Pallimed
Opioid-induced hyperalgesia (OIH) is a rare syndrome of increasing pain, often accompanied by neuroexcitatory effects, in the setting of increasing opioid therapy. Clinicians should consider OIH in patients on high dose opioids or during a period of rapid opioid escalation. While case reports show a wide range of dosages can provoke this syndrome, the majority of patients are on very high doses, often greater than 1000mg oral morphine equivalents per day and typically via parenteral routes (IV and intrathecal). Morphine is by far the most common opiate implicated in OIH. Hydromorphone and oxycodone, members of the same class of opiate as morphine (phenanthrenes), can also cause OIH, but oxymorphone has not yet been reported to cause it. Methadone, a synthetic opioid in the class of diphenylheptanes, and fentanyl, a synthetic opioid in the class of phenylpiperidine, are considered less likely to precipitate OIH.
Existing data suggests that OIH is caused by multiple opioid-induced changes to the central nervous system including:
- Activation of N-methyl-D-aspartate (NMDA) receptors
- Inhibition of the glutamate transporter system
- Increased levels of the pro-nociceptive peptides within the dorsal root ganglia
- Activation of descending pain facilitation from the rostral ventromedial medulla
- Neuroexcitatory effects provoked by metabolites of morphine and hydromorphone
OIH can be confused with tolerance as in both cases patients report increased pain on opioids. The two conditions can be differentiated based on the patient’s response to opioids. In tolerance, the patient’s pain will improve with dose escalation. In OIH, pain will worsen with opioid administration. This paradoxical effect is one of the hallmarks of the syndrome. On physical exam, patients are grimacing in pain with moderate-to-severe distress, myoclonus, altered mental status or delirium and often allodynia (pain due to non-painful stimuli, such as light touch).
Typically, if you suspect OIH, you should get a pain or palliative care consultation because it will seem wrong to decrease opiates in a patient in severe pain. Opiate dose reduction and rotation to a synthetic opioid such as fentanyl or methadone is recommended. Methadone has the additional benefit of NMDA antagonism. It is not surprising that methadone has been shown to improve or resolve OIH given the role NMDA activation plays in causing OIH. Adjuvant therapies, such as acetaminophen or neuropathic pain medications, should be considered as they may decrease the need for opioids. Benzodiazepines may be a temporary addition to manage myoclonus as the OIH resolves.
Symptoms of OIH do resolve when patients are treated with the above strategies. However, it can be long and difficult to wean some patients to a low enough level of opioids to stop OIH. Existing literature does not address any long-term consequences of OIH. We hope to see more research on this subject.
Over the next 48 hours in the hospital, her myoclonus improved. Her pain and mental status improved more slowly. It took a week to re-establish control of her pain. At the time of discharge, she rated her pain as 3/10. Her new pain regimen consisted of methadone 10mg three times a day and oxycodone 5mg every 4 hours as needed.
1. Chu, L. Opioid-induced Hyperalgesia in Humans: Molecular Mechanisms and Clinical Considerations. The Clinical Journal of Pain Issue: Volume 24(6), pp 479-496. 2008.
2. Smith, M. Neuroexcitatory Effects Of Morphine And Hydromorphone: Evidence Implicating The 3-GlucuronideMetabolites. Clinical and Experimental Pharmacology and Physiology, 27, pp 524–528. doi: 10.1046/j.1440-1681.2000.03290. 2000.
3. Mao, J. Opioid-induced abnormal pain sensitivity. Current Pain and Headache Reports. Volume 10, Issue 1, pp 67-70. 2006
4. Lee, M et al. A Comprehensive Review of Opioid-Induced Hyperalgesia. Pain Physician 2011; 14:145-161. ISSN 1533- 3159. Open Access PDF
Case Conferences Editor - Christian Sinclair, MD
Photo Credit: Dunn Harvárr Valley by Asbooth2011 via Wikimedia Commons
Monday, August 10, 2015 by Pallimed Editor ·
Monday, August 3, 2015
“… in the movie, sadness saved all their lives.”
I heard these words from a 9-year old at the end of an NPR story on Pixar’s new film Inside Out. (Note: that the audio has more than the webpage written content.) I thought to myself: There is a movie explicitly about emotions? About the importance of what so many deem to be “negative” emotions? What?! I need to see this movie. How can this movie be used within palliative care?
Such sentiments were supported further as I read stories from parents who wrote about the impact watching Inside Out had on their families. One writer notes, Inside Out is a movie in which you see the “beauty and bittersweetness of grief… Deep within the theme of this movie is also the impact that tragedy has on our past memories.”
With these reviews in mind, our palliative care team went to see the movie together recently. The movie lived up to the expectations set for me. I can imagine using the “characters” (emotions) to help explain the mixed feelings encountered in the word of palliative care.
I’m also still smiling at the scene in which Sadness sits down and listens to the life review of an imaginary friend named Bing Bong… She doesn't say much at all, but afterwards he is amazed about how much better he feels. Palliative care anyone?
Jenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO.
Image credit: Found via Idle Hands
Monday, August 3, 2015 by Jenni Linebarger ·
Thursday, July 30, 2015
|Tommy Steel's statue of Eleanor Rigby, Liverpool|
As hospice and palliative medicine practitioners, we have the opportunity to witness the lives and deaths of people from all walks of life. Many people we care for die surrounded by loved ones who are full of memories, pain and grief. Others, however, die alone, or with relationships too strained to bring value. When we care for these people, we learn who they are and become their witnesses. We hear their stories and secrets, as Lizzy Miles MSW discussed in a recent Pallimed post. We witness their end. And we remember.
Uberto Pasolini’s 2015 movie, Still Life, illustrates the life of one person who was serious about remembering. The main character, John May, is a government worker whose job it is to find family members of people who died alone. He works meticulously, exhausting all paths to find someone who cares. If he fails at this task, he shows his own respect by planning and attending funeral services no one else attends. He keeps his own photo album and remembers people he never knew in life.
|"Sad Lady" ~Stella Newport, 4 years|
The risk of increased numbers of people dying alone has the potential to increase as more people reach their elder years alone. Maria Carney, MD completed a literature review revealing increasing numbers of elderly US citizens without children, nicknamed “elder orphans”. A similar phenomenon is documented in the UK, with estimates that by 2030, two million pensioners in Britain will have no adult children. Both articles discuss the rising need for personal and medical care but they also raise the question: who will remember them?
This is hardly a new concept. We even have a soundtrack, nicely provided by the Beatles in their 1966 song Eleanor Rigby. Although the idea is old, it feels like a valuable and timely concept to consider. What does it mean for us, as providers and as people, to carry these people with us, or not? Particularly when we hold stories no when else knows, with no one to pass them onto? I wonder, what do other providers do to remember? To acknowledge? Is it our job to do the remembering, like John May did? Does that benefit anyone other than the remember-er? In a recent conversation with a hospice social worker, she pointed out the value in getting to know her patients, if for no other reason but that the patient will feel they will be remembered.
Kristina Newport MD (@kbnewport) practices Hospice and Palliative Medicine in Lancaster, PA where she also spends time running after her children, 4 and 6.
Photo Credit: Tommy Steel's Staue of Elanor Rigby via Wikimedia
Illustration Credit: Sad People by Stella Newport, all rights reserved
Thursday, July 30, 2015 by Kristina Newport ·
Sunday, July 26, 2015
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 ·
Friday, July 24, 2015
July 9 was a good day. You know that feeling you have when you attend conference and you come back to work charged up and ready to change the world? That’s the feeling I had after listening to a live webcast of the Institute of Medicine’s Health Literacy and Palliative Care Workshop. The sessions and discussions were inspiring and conveyed the pressing need to revolutionize patient care.
I tuned in during Diane Meier’s Overview talk. Dr. Meier is one of the rock stars of palliative care and, full disclosure, I am a groupie. She asked the audience to consider where the health literacy problem lies. Is it with patients and caregivers forced to navigate an increasingly complex healthcare system or is it with healthcare professionals that offer treatments that do not add quality or longevity? More medical care is not always better care. Fee-for-service reimbursement models drive the chaos, resulting in less time spent with patients and no time for them to assimilate the information and ask questions that would allow them to make decisions consistent with their values and wishes. Too often, we offer treatments but neglect discussing the impact on quality of life.
Next I listened to Beverly Alves heartbreaking story of the difficulties of finding compassionate and coordinated care when her husband was diagnosed with cancer. It’s a strange paradox that we have made such scientific and technological advances but seem to have regressed in actually caring for patients and families. Beverly’s remarkably moving story provides a directive for what needs to be fixed in healthcare; now, not in our lifetime, but now.
Later Bob Arnold spoke about communication training for physicians. He suggested that physician-patient communication is a procedure, just like starting an intravenous catheter or putting in a chest tube. These procedures require training and practice. After all, new physicians don’t perform complicated medical procedures alone, but they are sent to talk to patients and families about prognosis, treatment options, and end-of-life care without sufficient training. Is it any wonder that physicians vastly overestimate prognosis and patients and families overwhelmingly believe that surgery (or chemotherapy) will cure stage IV cancer?
The next speaker, Elaine Wittenberg talked about communication training for nurses. The core of nursing principles aligns with palliative care. Nurses tend to assume that good nursing care is synonymous with palliative care. But it’s not. Dr. Wittenberg pointed out that nursing programs need to include more instruction in palliative care principles. In the discussion, one participant noted there was a lot of content about palliative care training for those already in the workforce but we need to more thoughtfully include palliative care content in nursing education. This struck home for me as I endeavor to infuse more palliative care content across all levels of nursing education.
We were taken to church by Reverend Richard Freeman who reminded us of the value of humanistic care. He emphasized what really matters to patients at end of life is being surrounded by loved ones. Carol Levine, and several other speakers, spoke about the forgotten caregivers. The population is aging and older caregivers are overwhelmed by navigating the healthcare maze, providing care, working, and running the household. Dr. Meier pointed out the United States spends less on social support compared to other countries. In other words, it’s easier to get chemotherapy or surgery than it is to get Meals on Wheels. An audience member shared an innovative idea: we need to train caregivers how to communicate about palliative care with the rest of the family. This ensures that everyone is on board with the patient’s wishes.
Palliative care proponents believe we need to draw a clear line between palliative care and hospice care. Palliative care is different from hospice care in that it can be offered in tandem with curative treatment while hospice care is for patients foregoing additional treatments with a prognosis of 6 months or less. Yet, I noted that the personal and patient stories shared were about patients facing end-of-life decisions. Moreover, the majority of palliative care consults at our academic health center relate to end-of-life care. I suspect this is true for most palliative care programs. I’m reminded of Dr. Meier’s saying that all hospice care is palliative care but not all palliative care is hospice care. Perhaps the differentiation between palliative and hospice care is more important to healthcare professionals than it is to the general public. What we need to convey to patients and families is that palliative care is simply patient-centered care.
I could go on about all the wonderful speakers and content, but instead encourage everyone to view thewebcast (embedded below). The webcast and the presenters’ slides will be available to replay and download. Every speaker had an important message to share. Ginger Marshall spoke about the personal notes and cards she has received from patients and families. When she has a bad day, reading these treasured notes remind her of the value and importance of the work. This webcast is a virtual card that you can open anytime you need some inspiration.
When I think about the big picture, I believe we are within the wave of a culture shift regarding healthcare. The opposing forces of old ways and new ways tend to create a tumultuous environment in our daily work lives. Heralding this shift, last week the Centers for Medicare and Medicaid Services proposed payment codes for the 2016 Medicare Physician Fee Schedule for advance care planning. If approved, these codes will allow providers to engage in meaningful and patient-centered advance care planning conversations upstream in clinics, avoiding the more difficult discussion at the bedside in the Intensive Care Unit. A recent ad drives home the point: it’s much easier to talk about your wishes when the decisions seem far away and are much harder to have while intubated with a breathing tube.
Thirty to forty years ago, the baby boomers brought about a return to natural childbirth and breastfeeding. With 10,000 baby boomers turning 65 every day, it’s time to bring about a revolution in patient-centered care and compassionate, humanistic end-of-life care. This webcast simultaneously gives hope for the progress made and provides a roadmap for the important work that remains.
Dr. Toni L. Glover PhD, GNP-BC, ACHPN is an Assistant Professor at the University of Florida, College of Nursing. The views expressed are her own and do not represent the views of College of Nursing or the University of Florida. Her research focuses on pain in older adults, pain, palliative care, and health disparities. As a Gerontological Nurse Practitioner and Advanced Certified Hospice and Palliative Care Nurse (ACHPN) she is committed to improving the care of older adults at end of life. You can find her on Twitter - @tgloverGNP
Illustration credit: Christian Sinclair for @Pallimed, available via Creative Commons
Friday, July 24, 2015 by Pallimed Editor ·
Tuesday, July 21, 2015
“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.
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 ·
Monday, July 13, 2015
As with all of the articles I write for Pallimed, this one was inspired by my experiences as a new hospice social worker. A patient was assigned to me from another social worker because of an internal restructuring. The patient had a reputation among the team as being a “challenge.” The chaplain on the team was also new to the patient. Within the first few weeks of our care, the chaplain started to frequently allude to the patient having revealed something significant, but he would not expand.
The Secret I Told
Tip #1: There is no reason to let your fellow staff members know that you’re keeping a secret if you don’t plan on sharing any part of the information. If you are going to keep a secret, then keep it.
I got to know the patient myself, and I built a trusting relationship. She revealed to me a history of multiple past traumas in great detail. I kept her stories to myself. She allowed me to take notes (mostly for my own memory). I determined initially that there was no need to share any details of her trauma. Her physical condition worsened, and it was recommended that she receive breathing treatments. Nursing staff reported that the patient “freaked out” during these treatments and became very anxious. The nursing staff was frustrated because they felt the patient would benefit from the treatment, but she did not want it. It did not take me long to recognize the connection between the patient’s fear of the breathing treatments and her trauma history.
Tip #2: If the secret is relevant to the Plan of Care, consider sharing information at a high level that will help staff to understand patient behavior.
I did not have to share the details of the patient’s trauma, but I did inform the team that the patient’s trauma history was affecting her acceptance of the breathing treatments. This information helped the staff to have empathy for the patient and her fear of the breathing treatments.
Hospice patient and caregiver secrets that I’ve heard fall into three categories: past acts, personal feelings, and current behaviors.
Other Patient Secrets
Past acts: Thankfully, I’ve yet to have anyone confess to a crime, so I cannot speak to what to do in that type of situation. If someone is experiencing extreme guilt for something they have done in the past, or how they have treated someone, I will coordinate with the chaplain to be sure that we are providing support as the patient or caregiver works through an issue. Oftentimes, there is a faith-based component to these worries. The details of these stories are not relevant to the Plan of Care, and therefore, not necessary to share in any form.
Tip #3: If patient feels guilty about something they have done in the past, but they have not yet revealed details, I might share with the team that the patient is working through an unkown issue. This allows for all team members to be ready to provide emotional support should the patient divulge information while they are providing care.
Sometimes it is the hospice aide or volunteer who hears the patient’s secrets. I do encourage these team members to share with the social worker or chaplain what is happening. The aide or volunteer may not be comfortable with the burden of the information that they have received, and so it is good for the social worker or chaplain to provide support to the staff that is providing support to the patient. Despite our best efforts, there are some patients who may not ever reveal to the social worker what they have told others. This is okay, as long as the social worker is apprised of the situation and adjusts the Plan of Care accordingly, if necessary.
Personal feelings: It is not uncommon for hospice patients or caregivers to have “negative emotions” such as anger, guilt, resentment, apathy, fear and/or shame towards others or themselves. Patients and caregivers can feel badly about the emotions they are experiencing. A big part of the social worker’s job is normalize feelings. Patients and caregivers will not expressly tell you not to reshare these feelings, but it is not uncommon for staff to be “caught in the middle” when the feelings are directed towards their own family members. It is not our place to get involved and share these thoughts with the other family members.
Tip #4: If appropriate, encourage patient/caregiver to speak about their feelings with the person directly.
Tip #5: Consider how the expressed feelings may affect the best care possible for the patient and family. For example, expressions of resentment can be an indicator that a caregiver might be a candidate for a respite break.
Remember, share only what is necessary.
Tip #6: Do not gossip with team about patient conflicts. Every provider that is in the position to hear secrets should have an outlet for their own self care. Social workers should seek supervision, chaplains have supportive networks, both could use journaling.
Current behaviors: Some patients or caregivers will reveal something to the hospice staff about behaviors. Hospice patients and caregivers sometimes will not tell their providers of alcohol, tobacco and/or current/past drug abuse. There is a common fear of judgement, or scolding. They don’t know that as hospice providers, we’ve seen it all. That’s not to say we should always look the other way. A patient’s present alcohol use or past drug use could interact with their medications. Even unreported over the counter medicines can affect prescribed medicines. It is in the patient’s best interest that the case manager knows about these things.
Tip #7: Keep the case manager informed on health behaviors that could affect the efficacy of medications and Plan of Care interventions.
Unfortunately, not every family member is a willing participant in a patient’s care. Sometimes patients can be in home situations that are less than ideal. Hospice staff members have to address signs of abuse or neglect. Hospice staff can be in the middle of family situations in which there is the threat of physical violence. There are also home situations in which there is suspected drug diversion; caregivers, as well, can be known to be using or abusing alcohol and drugs. We need to assess how this impacts their ability to provide care for the patient. In any of these types of situations, the hospice staff member needs to coordinate with the clinical manager and the team regarding what we know.
Tip #8: Keep the team informed of any behaviors that could impact the safety of the patient or hospice staff.
Ultimately, the simple barometer for whether to reshare can be measured by answering these questions:
- What is the purpose of my sharing this information?
- How does this impact the Plan of Care?
Photo credit: The Book of Secrets available to buy from GILDbookbinders on Etsy
Monday, July 13, 2015 by Lizzy Miles ·