The first qualitative study to explore the views of parents and families during end-of-life (EOL) care for children with cancer is providing insights into what families need during this painful time, as well as the policy changes and programs that could help overcome barriers to spending time with a dying child.
Bereaved Parents’ Views on End-of-Life Care for Children with Cancer: Quality Marker Implications, research that was conducted by Dr. Emily Johnston and colleagues from Jacob’s Heart Children’s Cancer Support Services, Lucile Packard Children’s Hospital Stanford, University of Washington School of Medicine, and the University of Alabama at Birmingham, was published in the May 2020 issue of Cancer, the journal of the American Cancer Society.
Led by Dr. Johnston, the study was conducted through one-on-one interviews with bereaved parents on their perceptions of “quality markers” at the end of life. The trusted relationships and support provided by Jacob’s Heart throughout the research process helped parents feel safe about sharing their experiences.
Among the research team’s findings:
- Most families prefer a natural home death for their child instead of at a hospital, except when there was inadequate home support or concerns about how a child’s siblings would react to a home death.
- Families reported wanting the option to continue anti-cancer therapy through end-of-life.
- Hospital visitation policies and financial strain were major barriers to families spending time with their child at end-of-life.
- Families were often underprepared for the events surrounding their child’s death and funeral arrangements.
- Families reported feeling a sense of “abandonment” by their clinical teams after the death of their child.
These last points suggest a need for both additional community-based support for families and additional education from clinical teams around caring for children with serious illness and their families as well as programs that maintain connection with the family after the death of a child.
Jacob’s Heart Children’s Cancer Support Services is located in Watsonville, California and has been providing community-based emotional, financial, practical and peer support to families of children with cancer and other serious illnesses for more than 20 years, including extensive grief support for families bereaved by the loss of a child. Learn more: http://jacobsheart.org