May 4, 2023
I haven’t worked with many adolescents and young adults (AYA, roughly teens to twenties). But when I have, I find that they’re often some of the hardest patients to care for. Why? We talk about why it’s so hard with Abby Rosenberg (chief of PC at DFCI and Boston Childrens), Nick Purol (clinical social worker at DFCI and Boston Childrens), Daniel Eison (pediatric PC doc and co-host of PediPal). We are grateful to Andrea Thach (PC doc at Sutter East Bay) for bringing this topic to our attention and for asking questions as a guest host. Here are just a few of the explanations for why it’s so hard:
They are closer in age to some of us (younger clinicians). Countertransference hits hard.
There’s an in-between space between adolescence and adulthood - and there’s something that we identify with in that in-between space, tugging at our heart strings
Everyone has been a teenager. Everyone has lived through their early 20s. Every member of the interdisciplinary team. Adolescence and young adulthood is a romanticized time of life in our culture. We remember bucking the rules, figuring out who you are, hair on fire, feeling invulnerable, trying to figure out who you are - and now those adolescents are stuck in the hospital, with doctors and parents telling them what to do, having their autonomy crushed by the medical institution, realizing they’re not invulnerable.
We talk about these issues and more - what resources to leverage, how to cope as a team. We in geriatrics and adult palliative care clinicians have so much to learn from our colleagues in pediatrics - and though many of these lessons are specific to adolescents and young adults - many of the lessons are valuable for the care of patients in older life stages.
Links to resources for working with AYA, from Nick Purol):
The Courageous Parents Network has a wealth of information/resources/videos/articles on many overlapping issues and topics related to caring for children/adolescents/young adults with serious illness (from both the provider and clinician perspective): https://courageousparentsnetwork.org
Empowering parents caring for children with serious illness through video, shared community, professional guidance, and palliative care. You are Not Alone.
Voicing My Choices is a wonderful tool for discussing goals/wishes and introducing advance directives in the context of serious illness. It's based off 5 Wishes and validated for AYA through direct feedback from the population: https://store.fivewishes.org/ShopLocal/en/p/VC-MASTER-000/voicing-my-choices
The Oxford Textbook of Palliative Social Work has several chapters relating to working with AYA (either due to family illness or their own), with many psychosocial clinicians in our field contributing: https://www.amazon.com/Oxford-Textbook-Palliative-Social-Work/dp/0197537855
Same is true for the Interdisciplinary Pediatric Palliative Care Textbook: https://www.amazon.com/Interdisciplinary-Pediatric-Palliative-Joanne-Wolfe/dp/0190090014/ref=sr_1_1?crid=33YG2UAKDZ8DO&keywords=interdisciplinary+pediatric+palliative+care&qid=1682288312&s=books&sprefix=interdisciplinary+pediatric+palliative+car%2Cstripbooks%2C101&sr=1-1&asin=0190090014&revisionId=&format=4&depth=1