Who’s Caring for the Children?

Imagine a community of people – doctors, nurses, parents, social workers, educators – who compassionately care for children with life-threatening illnesses. Each brings unique expertise and urgently feels the imperative to be as helpful as possible. Coming and going at different times of the day and night, these individuals work towards a common goal, but do not always have time to talk to – and support – one another.

Now imagine this community of caregivers joining forces to communicate and coordinate resources, build a community-based model of exceptional care for seriously-ill children, forge new bonds with one another, create tools that improve coordination of care, and ponder this question: Who’s Caring for the Children?

On June 1, 58 individuals representing 20 organizations caring for seriously-ill and grieving children gathered at Jacob’s Heart in Watsonville for a day of teaching, sharing and reflection. Throughout the day, we immersed ourselves in the waters of grief, love and inspiration using newly published curriculum from the End-of- Life Nursing Education Consortium at the City of Hope adapted to address our community needs. Informed by evidence-based tools and strategies, the day of interactive training inspired those caring for children, supporting growth through experiential learning, active listening and deeply honest conversations.

Parents Share Their Perspectives: The most poignant teaching of the day was offered by parents bereaved by the loss of a precious child. Their reflections, resilience, wisdom and strength advanced our understanding of how best to serve and how essential it is that we collaborate and coordinate so that each family experiences a continuum of services seamlessly integrated from diagnosis to treatment and beyond. 

On this day, we grew in wisdom and love, unifying ourselves as a caring community. We learned the importance of listening rather than “fixing” and accompanying rather than “directing.” We shared practical strategies for enduring the tough days when we feel like we’re drowning in grief and fatigue and committed ourselves to promising new strategies that inspire hope.

We are deeply grateful to the Jordan and Kyra Memorial Foundation, Lucile Packard Children’s Hospital Stanford and Hospice Giving Foundation for investing with Jacob’s Heart to train and sustain those who care for the children. We thank the Health Improvement Partnership, Central Coast Alliance for Health and the Coalition for Compassionate Care of California for their partnership in these important efforts.

Published in the Aptos Times
Times Publishing Group
July 1, 2018

FACULTY

LEAD : Gay Walker RN, CHPN, CHPPN
Pediatric Palliative Care Consultant
Former Program Director Trinity Kids Care, Torrance, CA

Harvey Cohen MD, PhD
Professor of Pediatrics
Stanford University School of Medicine
Medical Director, Pediatric Palliative Care Program
Lucile Packard Children’s Hospital Stanford

Nancy Contro MSW, LCSW
Director, Family Guidance and Bereavement Program
Lucile Packard Children’s Hospital Stanford

Ruth Emerson LCSW
Director of Palliative Care and  Bereavement
Coastal Kids Home Care

John David Mark MD
Clinical Professor of Pediatrics
Medical Director CORE Program
Lucile Packard Children’s Hospital Stanford

Barbara Sourkes PhD
Professor of Pediatrics
Stanford University School of Medicine
Director, Pediatric Palliative Care Program
Lucile Packard Children’s Hospital Stanford

FACILITATOR : Lori Butterworth M.Ed.
Founder and Executive Director
Jacob’s Heart Children’s Cancer Support Services
Co-Founder Children’s Hospice and Palliative Care Coalition

Location:
Jacob’s Heart Children’s Cancer Support Services
680 West Beach Street, Watsonville CA 95076

For more information:
[email protected]

The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from the Robert Wood Johnson Foundation. Additional funding has been received from the Cambia, Millbank, Oncology Nursing, Open Society, Aetna, Archstone, California HealthCare, and Stupski Foundations, American Association of Colleges of Nursing, National Cancer Institute (NCI), US Cancer Pain Relief, and the Department of Veterans Affairs (VA). Materials are copyrighted by COH and AACN and are used with permission.

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