What is the difference between “giving up” and “letting go”? And how can families hope for the best, yet still prepare for end of life decisions?
Families who live through repeated crises from which a child “bounces back” may find it difficult to grasp that a cure is no longer possible. [1] Studies indicate that physicians have an especially hard time talking to children and their families about death. Therefore, they may delay such discussions long past the appropriate point. [1] This, in turn, denies young patients and families the chance to make informed decisions about invasive treatments, pain management, emotional and spiritual assistance and a host of other critical end of life issues. Delay may also cut off the opportunity to fully celebrate the life of the young person.
Another critical gap in childhood cancer treatment involves appropriate use of palliative care, or comfort care. The primary goals of palliative care are to minimize pain and discomfort from the cancer and any related treatment and provide for the young patient’s and family’s needs on emotional, practical and spiritual levels.
Coordinated palliative care involves the entire team of health professionals and extends to clergy, hospice workers and community service providers—all of who work in concert with the family and young patient to anticipate and meet their many needs. Experts recommend that palliative care should begin right at diagnosis for all children with life-threatening conditions [2] and should continue through bereavement for family members. [3] Unfortunately, the United States has few providers trained in this field.[4]
Families continue to need cross-disciplinary care to deal with death, and to make the transition from mourning loss to reclaiming and rebuilding life. Improved professional and public education regarding end of life and bereavement care could help significantly reduce unnecessary pain and suffering.
A LION IN THE HOUSE offers an intimate view of patients, families and professional caregivers when a cure for cancer is beyond reach. The series explores a variety of journeys at the end of life. Whether families draw on extensive or minimal support from siblings, stepparents and grandparents, they face choices that can lead to confusion and disagreement. Many other factors can increase the crushing burden at the end of a child’s life, including a breakdown of communication within the medical team or between physicians, patients and parents; cultural barriers; and family stresses unrelated to cancer. Making decisions and living with them can be agonizing for everyone involved.
A LION IN THE HOUSE reveals how advances in medical technology are often not matched in meeting other needs that are equally urgent, such as emotional and spiritual support. Through the series, viewers experience the indescribable loss of a child, as well as the challenges and opportunities that arise for families after a death.
The community engagement campaign for A LION IN THE HOUSE seeks to enhance the resources and support that are available to children and families facing end of life issues. Spearheaded by ITVS Community, the campaign encourages local organizations and public television stations to work in partnership to develop activities that support goals in key areas, including:
- Providing education and ongoing professional development opportunities for medical and school personnel
- Promoting public education and awareness
- Enhancing communication and coordination among caregivers, families and community support organizations to improve all facets of care
Resources provided by ITVS to support local efforts include: national partners, regional organizers, a website, print materials (fact sheet, discussion and planning guides), press releases, flyers and a video module focused on end of life content from the series. These resources are available for local workshops, screenings, forums and other events.
Download Facts and Resources for Pediatric Palliative, End of Life and Bereavement Care
(Download PDF)
References
1. Marilyn Field and Richard Behrman, Editors: When Children Die, National Academies Press, 2003, pp. 88-103
2. American Academy of Pediatrics: Palliative Care in the Medical Home
3. Personal Communication, Stephen R. Connor, Ph.D., Vice President, Division of Access for End-of-Life Care, Research and International Programs, National Hospice and Palliative Care Organization
4. “A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions,” NHPCO white paper, 2001, p. 3
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