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Recommendations to Improve the Quality of Palliative and End-of-Life Care at St. Jude Children’s Research Hospital

As parents of seriously ill children, we recognize the importance of finding a cure for pediatric cancer and other catastrophic diseases. We also know that despite the best efforts of clinicians and researchers, children continue to die from cancer or complications of its treatment. We pray that one day we might together celebrate Danny Thomas’ dream realized when truly no child will die in the dawn of life.

As we wait for that day, it is our desire to work hand-in-hand to improve the quality of life and care provided for our children and our families at St. Jude Children’s Research Hospital and around the world, beginning at the point of diagnosis of a chronic, life-threatening, and incurable disease. Therefore, the Family Advisory Council has formed a Quality of Life and Palliative Care Subcommittee composed of 14 bereaved parents. We, the parents, have identified care priorities for quality improvement and generated a list of recommendations.

The St. Jude Patient and Family Centered Care Initiative and the Division of Quality of Life and Palliative Care organized a subcommittee aimed at creating palliative care priorities that could be utilized in quality improvement initiatives as well as for strategic planning. Members of the Division of Quality of Life and Palliative Care (Drs. Javier Kane and Justin Baker) met with us, the bereaved parents, for a total of 6 hours in 3 separate monthly focus group meetings.

Our subcommittee deliberated about our own personal experiences and commented on what we considered to be the most important priorities in the care of children with poor prognosis for long-term survival. The information provided by our focus group was documented and subsequently summarized. Eight recommendations based on identified priority areas are summarized below.

Recommendations