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Friday, September 21, 2018

International Palliative Care Education - EPEC-Peds

By Stacy S. Remke (@StacyRemke)

In about 2004, our program embarked on a regional pilot project to teach healthcare workers – doctors, nurses, social workers, chaplains, and others – to provide pediatric palliative care. Our region is the Upper Midwest: Minnesota, Iowa, Wisconsin, North and South Dakota. “Join pediatric palliative care,” we joked, “and see the world!!”

Little did we know.

From these first steps began a truly humbling and inspiring journey across many continents and into many communities.

Much of this started when a project I was involved with – Education in Palliative and End of Life Care for Pediatrics* (EPECPeds) – launched. The larger world was very interested in a flexible, curriculum to scale pediatric palliative care services. Groups from India, South America, the Pacific Rim, and an Isreali-Palestinian initiative among others invited us to teach and most importantly to train others to teach. When I travel I also look up palliative care friends I have met along the byways and see what their work is like. From these travels and workshops, relationships formed. Lively discussions erupted. What does pediatric palliative care look like in other countries? How has it evolved? What are the lessons learned to help, and ones to avoid?

As a social worker, people usually ask me about mental health, psychosocial and bereavement support considerations. These are especially tough questions when one knows little of the cultural context, perceptions of, and approaches to mental health, or the resources available to address the needs. In India, the first question families are asked when a new diagnosis is made is “how much money do you have?” The second question is “what do you want the patient to know?” Collusion between the physician and the extended family about how much (if anything) to tell the patient, is common and expected. It is important to account for and adjust to these differences. But some things are universal. I was recently in Singapore, working with a pediatric palliative care team. On several home visits, I saw devoted families providing exquisite loving care.

International work can leave haunting memories too. In the aftermath of Hurricane Haiyan, in the Philippines, I volunteered near the community health center’s “intensive” care unit for the sickest patients. This small room with dirty green walls and sputtering florescent light held two narrow cots and a gurney, a large rusty O2 tank, and a cabinet. I observed a girl no older than 13 handbagging an elderly man lying on a gurney. In the other corner, an elderly person was huddled against the edge of a cot, hopefully sleeping. As I peeked into the room, the girl turned to me with an expression of great anxiety and distress. She did not break rhythm in her bagging task. I asked the physician about the scene, who explained that family members often must provide such care as no other resources exist. She expected this elderly cancer patient would die within a few days. I asked about discussing a do not resuscitate order or advanced care planning. She said no, that would happen with the oncologist at the regional cancer center…3 hours away. All I could hope for was that the grandfather wouldn’t die during this young girl’s shift at the bedside.

These international adventures in palliative care can be enriching and maddening all at once and are likely to change us in ways we do not expect. For me, I no longer take for granted the tremendous resources and access people have here in developed countries. Routine illnesses here are life-threatening in other places. What then are the boundaries of palliative care? We apparently can’t take suitcases of morphine to places where supplies are restricted. (I asked!) What can we do then to improve a lot of those living with pain? As a start, make some friends. Go and visit them. Witness love, skill and dedication in action. Be humble. See what you can offer.

By the way, we never did crack North Dakota in our initial pilot effort, but other doors opened. Join the palliative care community and see the world, indeed!

*EPEC-Peds is an NCI funded curriculum and training initiative. PI: Stefan Friedrichsdorf, Joanne Wolfe, Co-I: Stacy Remke, Joshua Hauser

Stacy S. Remke, LICSW, ACHP-SW was a pediatric palliative care social worker for over 27 years and one of the founders of PPC at Children's Hospitals and Clinics of MN. She currently teaches graduate social work at the University of Minnesota, hoping to inspire the next gen palliative care social work community. She is also on the board of SWHPN. When not occupied with all things palliative Stacy can be found wrangling her 108 lb "puppy" Seamus.

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