Palliative Care and End-of-Life SIG
Summer Newsletter 2021
A long overdue hello!
We held our 3rd annual business meeting at vSPPAC on April 8th. Given the unique challenges of COVID-19 for those working with critically ill, dying, and bereaved patients, we opted to use this time to reflect on meaningful patient and family interactions we’ve had, share personal practices to honor those we have lost, and hold space for self-compassion in the light of the rewarding but often emotionally taxing work we do. Our meeting also included a fantastic presentation by our trainee poster award winner, Alexandra Himelhoch, regarding her research into long-term distress among siblings bereaved by childhood cancer. Lastly, not ones to miss an opportunity to have a little fun, we launched our inaugural Pediatric Palliative Care (PPC) Pub Trivia. Attendees competed in a show-what-you-know battle of knowledge about all things PPC, including clinical best practices and resources, representation of PPC and bereavement in pop culture, factoids about PPC across the globe, and more. Lauren Wruble took home the prize of two of our favorite children’s books: The Gift of Gerbert’s Feathers and The Invisible String.
What’s next for the group? Our leadership team is hard at work developing our website, complete with resources for families and professionals alike. Also, keep a look out for the Clinical Practice in Pediatric Psychology special issue on Pediatric Palliative Care and End of Life this fall. We’re looking forward to an exciting quarter ahead!
All our best,
Amanda Thompson and Rachel Kentor
SIG Co-Chairs
Welcome to our New Student/Trainee Member!
We are pleased to announce that Julia Tager will be joining our leadership team as a new Student/Trainee Representative. Julia is a pediatric psychology graduate student at the University of Wisconsin- Milwaukee who first became involved in peds palliative care early in her undergraduate training through internships at the NIH/NCI, where she explored pediatric palliative care team structures and practices and identified bereaved parents' perceived benefits and burdens of participating in palliative care research. Currently, she is examining chronic stress and positive coping among parents of children with medical complexity served by a hospital-based care coordination program. Julia is excited about opportunities to engage with members and increase trainee awareness about the SIG. She joins Juliana Yanguas, who will be continuing on for a second year, to ensure that trainee interests continue to be recognized and valued in future activities and initiatives. Congratulations and welcome Julia!
As we welcome Julia, we also want to extend a tremendous thank you to Jarred Gallegos, our outgoing student rep, for his hard work during his time with us. Jarred has helped us keep up with our growing membership and contributed to a number of initiatives, and we are so grateful for his contributions. It's been such a pleasure getting to know and work with you, and we wish you the best on the next stage of your career!
Stay tuned for a new call for upcoming open leadership positions! We'd love to have you join our team!
Pediatric Palliative Oncology Symposium (PPOS) 2021
Pearls from PPOS
1. Joanne Wolfe, MD, MPH, opened the conference with an amazing talk challenging the assumptions of pediatric palliative oncology. During her talk, she discussed strategies to improve goals of care conversations. She often speaks of the bucket analogy, explaining that our patients fall into 3 'buckets' when it comes to goals of care: Some patients want to live a long life, others want to live as long AND as well as possible, and some want to live as well as possible, today.
2. Dr. Wolfe also highlighted the importance of interdisciplinary teamwork (over multidisciplinary care) in pediatric palliative care. She stated, "We take better care of our patients when we get the whole team together and empower all voices, breaking down the siloes."
3. Dr. Erica Kaye presented on partnering with patients and families who hope for cure despite poor prognoses. There are many definitions of hope, and our patients and families can maintain hope while still understanding the nature of their poor prognoses. As one participant in her research study shared, "Hope was my vehicle to cope. I believe that without hope in something, there is no point to anything." Another said, "Hope is a choice, it is a decision to not give up. Hope is not about the outcome, it is about the fight."
4. Cultural humility is extremely important in the pediatric palliative care world. We often engage in challenging conversations with our patients and families, and it is critical as providers to remain mindful of our biases that may impact these conversations. Presenters shared a mindful practice for difficult conversations which involves pausing, taking slow/deep breaths, reflecting on the patient/family/their culture, tuning into your emotions, taking more slow/calming breaths, and then proceeding with the conversation.
5. Integrative medicine continues to hold promise in pediatric care and appears to be rapidly expanding across pediatric institutions. Dr. Holly Spraker-Perlman addressed challenges and barriers to implementing integrative medicine clinics while noting the benefits of these practices in holistically addressing our patients' and families' needs and improving their overall quality of life. Check out NCCIH"s fact sheets on their website for additional information about integrative medicine modalities for your patients: Health Topics A–Z | NCCIH (nih.gov).
6. St. Jude Children's Research Hospital continues to lead the way in grief and bereavement programming. Empowering bereaved parents by giving them roles as mentors and Quality of Life Steering Council members has allowed them to honor their child's legacy. One bereaved father on the panel emphasized how participating in St. Jude's Bereavement Program has given him the opportunity to continue being his daughter's father, and this means the world to him. If your institution is interested in expanding your grief and bereavement programming, please reach out to lisa.clark@stjude.org for resources and guidance.
7. Quoting Dr. Justin Baker, "Self care is not selfish." With the COVID-19 pandemic, this last year has presented numerous challenges for all of us including emotional exhaustion, burnout, social isolation, and much more, along with limiting our abilities to engage in our typical coping strategies. In order to provide the best care for our patients and families, it is essential we fill our cups up as well. So, whether it is taking a run, practicing yoga, calling a friend, eating a bowl of ice cream, or baking a favorite treat, please take the time to recharge your batteries. Your patients are counting on you, but most importantly you deserve self-care too!
8. The conference ended on an inspiring and uplifting note as the video of Nightbirde's performance on America's Got Talent was shared. If you have not watched this video yet, do yourself a favor and click on this link as I believe many of you will be reminded of the resilience we see in many of our patients: Golden Buzzer: Nightbirde's Original Song Makes Simon Cowell Emotional - America's Got Talent 2021 - YouTube. Two of my favorite quotes she shares in this performance are, "It's important that everyone knows that I am so much more than the bad things that happen to me," and "You can't wait until life isn't hard anymore before you decide to be happy."
Wishing you all a summer filled with joy, compassion, and self-care. Thank you for all of the work you do in serving our population; it does not go unnoticed,
Megan Schaefer, PhD
Pediatric Psychology Postdoctoral Fellow, St. Jude Children's Research Hospital
Member Research Spotlight: Dr. Melissa Cousino
Dr. Melissa Cousino is an Associate Professor of Pediatrics at the University of Michigan and Director of Psychosocial Services and Research, also known as the M-COPE Program, for the Congenital Heart Center at C.S. Mott Children’s Hospital. She completed her PhD in Clinical Psychology at Case Western Reserve University as part of the NIH funded-T32 research training program in Pediatric Psychology. She went on to complete her psychology internship and fellowship at Boston Children’s Hospital where she was fortunate to participate as the first ever psychology trainee in the Harvard Interprofessional Palliative Care Fellowship Program (https://pallcare.hms.harvard.edu/training).
Since graduate school, Dr. Cousino’s research has focused on healthcare communication and decision making in pediatric critical illness. Her earliest work was in the areas of bioethics and communication in pediatric phase 1 cancer trials. Her clinical experiences as a member of the palliative care team while a trainee at Boston Children’s Hospital continued to inspire a program of research focused on communication and decision making. As an attending transplant and cardiac psychologist at the University of Michigan, Dr. Cousino has successfully launched a multiple-NIH funded program of research on communication, decision making and psychosocial outcomes in pediatric advanced heart disease. She currently serves as PI for two NIH funded grants focused on healthcare communication and medical decision making in adolescents and young adults with advanced heart disease. The first, a descriptive study, has laid the foundation for a communication focused intervention study regarding high stakes decisions in cardiology, such as ECMO use and surgical decision making. Dr. Cousino is also co-PI of a 22 center study using machine learning to predict risk and resilience following heart transplant in pediatric patients with critical congenital heart disease. Dr. Cousino co-led the Harvard Radcliffe State of the Science Workshop on Palliative and End of Life Care in Pediatric Cardiology (publication coming soon in Cardiology in the Young). She has served on various clinical guideline writing groups related to the provision of both palliative and psychological care in cardiology. She remains involved in other areas of palliative care focused research, largely as a mentor or consultant, including studies focused on parental bereavement and parent-focused interventions in the ICU setting.
Clinically, Dr. Cousino cares for patients with solid organ transplant and heart disease. She also provides supervision to a growing cardiac psychology mental health program (including psychology fellows – trainees encouraged to apply!!). She serves in leadership and scientific advisory board positions for Cardiac Networks United, International Society for Heart and Lung Transplantation, Transplant Families, Enduring Hearts, and ACTION, for which she oversees the 20+ center patient/parent reported outcomes program. Dr. Cousino notes that her greatest joys are her two young children (Harper, 4 and Hudson, 1; along with charcuterie boards and boat rides). Thus, she is especially passionate about mentoring and supporting moms of littles in academic medicine. Melissa shares that she would LOVE to connect with SIG members, including trainees interested in palliative care focused research. Email Melissa at melcousi@med.umich.edu and follow along on Twitter @melissacousino for cardiology, transplant, palliative care and psychology tweet fun!
Palliative Care Podcasts
Looking for some great new media content? Have a long commute? Like to learn while walking the dog? Check out some of these great podcasts focused on palliative care!
1. That Good Night- Dr. Sunita Puri: That Good Night by Terrible, Thanks For Asking | Podchaser
2. Words Matter- A Palliative Care Physician's Perspective: Dr. Michael Barnett: 159 - Words Matter: A Palliative Care Physician's Perspective - Michael David Barnett MD, MS, FACP, FAAP, FAAHPM - Swallow Your Pride Podcast (theresarichard.com)
3. PediPal- Water Support Team: Episode 1: Water Support Team (pedipal.org)
4. PediPal- A Lovely Episode: Episode 4: A Lovely Episode (pedipal.org)
5. The Waiting Room Revolution: Podcast | Waiting Room Revolution
Contact Information
Email: div54palliativesig@gmail.com
Website: Comingsoon.com
Phone: .
Twitter: @SPP_PallEoL