Pediatric Palliative Care & EoL SIG
Fall Newsletter: November 2022
Happy National Hospice & Palliative Care Month!
Greetings SIG members,
We hope this newsletter finds you well! It is hard to believe it is already November. Where does the time go? We want to wish each of you a Happy Palliative Care and Hospice Month. With the upcoming Thanksgiving holiday, we want to express our gratitude to each of you for the amazing work you continue to do in supporting patients and families impacted by pediatric serious illness. We are thankful for the countless hours you spend compassionately showing up to support patients and families through their hardest moments, for the time and energy you invest in producing research that will improve the clinical care we provide to our patients and families, and for your dedication to advocacy through the many pediatric palliative care organizations you all participate in. Your efforts, energy, and passion are noticed. Thank you!
Since our last newsletter, SIG members have been very busy with several initiatives. We recently introduced our Pediatric Palliative Care Advisor Program, which is a program that matches advisors with advisees who are interested in a career in pediatric palliative care psychology. The goal is to provide mentorship on various aspects of pediatric palliative care psychology including clinical care, program development, research, and advocacy. Many of our advisees are graduate students who are eager to learn more about pediatric palliative care psychology, which is very exciting. The future of this field is looking bright with these stellar advisees! If you are interested in participating in this new program, please email Dr. Emma Ross at eross1@phoenixchildrens.com. In addition to this program, many of our members have been active on the research front ranging from workgroups to promote awareness of psychologists' roles in pediatric palliative care, manuscripts, and conference submissions. Please check out the list of 2022 publications from our members towards the end of this newsletter. We look forward to SPPAC 2023 in Chicago to see all of the amazing work our members are doing!
To celebrate National Hospice and Palliative Care Month, we plan to send weekly emails on Mondays ("Meaningful Monday Moments") with a piece of literature that allows us to reflect on our work in pediatric palliative care. We hope these poems and short stories bring comfort, inspiration, and healing to each of you as you begin your work week. We also plan to remain active on our Twitter account (@SPP_PallEoL) to engage our interdisciplinary team members and contribute to the mission of promoting awareness of palliative care during this special month. Although we were unable to offer a webinar this month, please stay tuned for upcoming webinars in 2023. Our leadership team has partnered with an amazing organization, and they have some really great content planned for the new year.
In this season of gratitude, we would be remiss to not extend our sincerest appreciation and thankfulness to our outgoing leadership team members, which include Dr. Rachel Kentor (Chair), Dr. Jill Majeski (Education Co-Chair), and Dr. Julianna Yanguas (Student Representative). It has been an absolute pleasure working with each of you. Thank you for your dedication, innovation, and commitment to growing this SIG and carrying out our SIG's mission. We are excited to welcome our new leadership team in December (stay tuned) but will certainly miss these wonderful ladies!
Wishing you all a fun-filled Fall and a joyous holiday season! Hope you are able to find joy and respite during this busy season,
Co-Chairs
Coming Full Circle: A mother's appreciation for pediatric psychology and palliative care
When my husband and I learned that our second daughter Cameron, age 6 months, had the rare and always fatal disease Tay-Sachs, and that she would die within the next few years, I had four immediate concerns: Could we keep her comfortable and free from suffering? What would we tell her two-year old sister, Taylor? Could my marriage survive? Could I survive?
The first concern was addressed by her pediatrician, who practiced anticipatory guidance with us and assured us that he would put a team together to help give her the quality of life we wanted for her. This community-based pediatrician proceeded over the next 18 months to practice primary palliative care and, along with a neurologist and home nurses, helped us give Cameron’s life a full arc, with no hospitalizations and a gentle death at home.
The next three concerns were handled over time by a pediatric psychologist named Laura Basili who at the time was based in the (now defunct) Coping Clinic at Boston Children’s Hospital. I would like to tell you that Laura was referred to us by the pediatrician or the geneticist who delivered the diagnosis. But we found her ourselves after several false starts with grief counselors who were pretty dreadful. We activated our personal network to find a grief counselor to help us process our anticipatory grief, manage our fears, and navigate the scary path ahead; and three months after the diagnosis, we began working with her.
To be clear, Laura worked with my husband and me. The patient, Cameron, was not developmentally in need of her services. She worked periodically with the older sister, Taylor, meeting with her 4 times during Cameron’s life. She also met with Taylor’s preschool administration and parents of classmates to help them process their own grief and anxiety as it became apparent that Cameron was approaching the end of her life.
While Cameron was never hospitalized at Boston Children’s, we went there periodically for our therapy. It began as once a month, increased to bi-weekly, and towards the end of Cameron’s life we were meeting with her weekly. I joke that I would have moved Laura into the house if that had been an option. She helped my husband and me understand how we coped differently and to respect the power in those differences; she helped us feel strong about our decisions about medical interventions; she helped me think through my very active fear of regret, particularly my decision to keep working; she helped us navigate family dynamics about burial plots; and she gave us the language to talk to Taylor. And following Cameron’s death, she worked with us and Taylor for another 18 months until she moved away, which timed well with our feeling sturdy on our own, thanks in large part, no doubt, to her. She was a bit like Mary Poppins. She left when we were good and safe on our own.
So it’s not surprising that when I was conceiving of Courageous Parents Network 12 years after Cameron’s death, I wanted Laura’s involvement. From its inception, Courageous Parents Network’s mission has been to orient, equip and empower parents of seriously ill children to advocate for their child and family and feel that they are being the best parents they can possibly be in the context they are in so that they have minimal regret and maximal healing following their child’s illness journey. Through its web and mobile platforms with parent and clinician videos, downloadable guides, and virtual events, CPN addresses and explores the psycho-social and emotional landscape of caring for a seriously ill child. It promotes parent agency in decision-making, family well-being, and the value of palliative care. Indeed, it has entire sections devoted to palliative care, including a section in its Clinician Portal about how to introduce palliative care to parents with videos of parents talking about the difference palliative care meant to their child and family.
But Laura was busy with other professional and personal responsibilities and referred me instead to another pediatric psychologist colleague, Nancy Frumer-Styron, who had just left Dana-Farber where she worked closely with children with cancer and their families. In the first two years of CPN, as I was building up the library of content for caregivers, Nancy was a consulting advisor who helped identify the vocabulary and name the topics we would use with families. I was an N of 1; Nancy had worked with hundreds of families. She taught me what, in her experience, most parents could tolerate, including words like anxiety as opposed to fear or dread. She was the very first clinician CPN interviewed so that parents could hear from a pediatric psychologist on topics like understanding anticipatory grief, how to communicate with their partner and other children, how to navigate fear of regret, and identity as a parent after the child dies. The pediatric psychologist was front and center.
It is fitting then that CPN has now, these 8 years later, officially added the pediatric psychologist Chrissy Salley to our team to help us reach pediatric clinicians focused on family well-being. From the very beginning, the psycho-social and emotional needs of parents and families in the face of the unimaginable has been our goal. Certainly pediatric palliative care as a practice and way of thinking about care is central to that; as is the vital role that a psychologist plays. Palliative care and pediatric psychology -- it seems that I and CPN have come full circle. Certainly, there is elegance in this for me personally for their shared primacy in my own narrative. More importantly, I suggest it is indicative of how logically beneficial it is to pediatric patients, their siblings and their parents to integrate psychology and palliative care. When the well-being of the child and family are the goal, these two disciplines make all the difference.
Courageous Parents Network is at CourageousParentsNetwork.org. And just for clinicians, the clinician portal contains resources for self-education; educating colleagues; and introducing patient families to key concepts. It includes resources on Introducing Pediatric Palliative Care, Understanding the Family Experience; Advance Care Planning; Shared Decision-Making; and Introducing Families to CPN. Register for the portal at courageousparentsnetwork.org/providers/portal. To make collecting and sharing specific CPN content for families and clinicians easier, the Bundle+Share feature is now available when you log into the Clinician Portal. To access Bundle+Share when using the app, you can choose Bundle+Share on the top right. When logged in on the website, you can choose Bundle+Share under your name and photo on the top left.
~Blyth Lord
Interview with Dr. Jared Rubenstein
Jared Rubenstein is a pediatric palliative care doctor and medical educator at Baylor College of Medicine and Texas Children’s Hospital. He is passionate about helping people talk about hard things.
- Tell us about your work. What do you love about working in palliative care? What are the challenges? I find it such an honor to get to be part of children’s and their family’s lives at the most difficult times and to get to work to make some of the challenges better. I also get to be part of an amazing interdisciplinary team. I get to come to work every day and be colleagues with some of the most amazing people I’ve ever met. Witnessing illness and heartbreak on a regular basis can certainly be challenging and leave a heavy emotional load. Providing patient care as part of a team helps with that. We try to be intentional about debriefing often and supporting each other through the hard things.
- You are well known among palliative care professionals (and beyond!) for your animated videos about palliative care topics. What inspired you to begin making these videos? Initially, frustration. The original fire department video was an analogy for a typical consult request we get that can show other healthcare providers discomfort with and misunderstanding of our field. As somehow who grew up watching cartoons like The Simpsons and South Park that used humor and satire for cultural commentary, I’ve always been fascinated by the idea that animation can do this. I think 1-2 minutes of animated satire can be a powerful tool for education and culture change. For me, they’ve become a sort of self-care. Being able to channel frustrations about things I wish were different into the videos has a bit of a cathartic effect.
- Your first video, "We're The Fire Department, Not The Fire," has nearly 50,000 views on YouTube - it clearly spoke to people in this community! So far, what has been the most surprising or interesting part of the response to your work since making that initial video? The most surprising has been how much they resonate with people! I definitely thought only I would find it funny. The most interesting part by far has been the connections and collaborations I’ve made through the videos that I don’t think ever would have happened otherwise.
- In your video, "Oh, That's So Sad" (linked below), we see the sad and uninterested responses a palliative care doctor receives when she tells acquaintances what she does for work. How do you talk about your job with those outside of the palliative care field? It’s changed a bit since I started. I used to try more to avoid causing discomfort and might just say I was a pediatrician. Now I lean into it more, I think these are such important topics for us to get comfortable discussing as a society. I usually meet the initial, “That’s so sad” with something like, “It can be, but I also get a chance to work every day with amazing children and their families. And on the hard days, I’ve got the support of amazing colleagues who are always there to help.”
- You have very effectively and creatively found a way to use social media to spread awareness of important palliative care topics and spark conversations. What advice do you have for others in this field who would like to begin (or further develop) a professional social media platform? Just go for it! I think I used Twitter for a year or two before I really engaged at all or wrote anything. There are so many common areas of connection and collaboration to be found. Regarding the professionalism element, I try not to write anything I wouldn’t be comfortable having my boss or family read.
- You are juggling many different professional responsibilities in addition to maintaining your online advocacy. What do you like to do outside of work? What brings you joy? I love spending time with my family. My wife and 2 kids are a wonderful respite the challenges of the work. I love hiking and spending time in nature and find exercise to be an important way to burn off the stress.
Want to see more of Dr. Rubenstein's work? See what he's up to on Twitter @DrJRubenstein or YouTube: https://www.youtube.com/c/jaredrubensteinmd.
Congrats to our PedPC members on their publications in 2022!
Aguilera, V., Schaefer, M. R., Parris, K., Long, A., Triplett, B., & Phipps, S. (2022). Psychosocial outcomes of parents in pediatric haploidentical transplant: Parental hematopoietic cell donation as a double-edged sword. Bone Marrow Transplantation, 57(3), 377-383.
Patten, J. T., Hoag, J. A., Galtieri, L. R., Canavera, K., & Thompson, A. L. (2022). Suicidality in bereaved parents within pediatric institutions: Recommendations for managing ethical challenges. Clinical Practice in Pediatric Psychology, 10(3), 346–355. https://doi.org/10.1037/cpp0000448
Schaefer, M. R., Aguilera, V., Parris, K., Long, A., Triplett, B., & Phipps, S. (2022). “Giving the gift of life twice”: Understanding the lived experiences of parent donors and nondonors in pediatric haploidentical hematopoietic cell transplantation. Pediatric Blood & Cancer, 69(2), e29480.
Moment of Meaning
To close out our newsletter, we provide the following poem as a prompt for reflection on the work we do and the families we meet. This poem was written by Wynne Morisson, MD, MBE, and published in JAMA last month.
Letting Go
My knee hurts as we walk, but it’s so
nice to be outdoors. You’ve grown,
for the rest of our lives you’ll be taller
than me. Every life’s like composing
a song. Even if the melody’s familiar,
it’s never just the same—each refrain
with its own mistakes or mistimed notes.
Then you say, so casually, that you felt
you had to let go of wanting to be
perfect in order to start making friends.
Those flaws that let us be human.
I met two parents in emergency,
their daughter so close to your age.
She had never learned to eat or talk
or walk, all the taken-for-granted things.
And what did they keep saying? How
her whole life, all she had ever done
was teach them what it means to love.
Citation: Morrison W. Letting Go. JAMA. 2022;328(16):1648. doi:10.1001/jama.2022.18525
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