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St. Jude strives to become an international resource for improving quality of life for patients and their families through our Division of Quality of Life and Palliative Care.
Children often enjoy ranking their favorite dance moves, athletic achievements or artistic performances on scales from 1 to 10, but those numerals can have a different meaning for some patients undergoing treatment at St. Jude Children’s Research Hospital. Their rankings are part of an assessment tool developed by the hospital’s Quality of Life specialists. This tool helps St. Jude staff identify and manage issues affecting children undergoing treatment.
“If we notice any distress during the assessment, then we brainstorm and talk with the patient’s family about how we can best help them,” says Angela Snyder, NP, who along with Karen Williams, NP, serves as one of two advanced practice nurses known as Quality of Life specialists.
This interaction is an integral part of a St. Jude effort to improve the quality of life for patients and their family members.
Justin Baker, MD, and his colleagues provide quality-of-life and palliative care services early in a child’s treatment journey.
“We focus on communicating, building relationships and continuing those relationships across various care environments,” says Baker, chief of the hospital’s Quality of Life and Palliative Care division.
Through clinical trials, consult services and cross-coordination of care, Baker’s team ensures that communication lines include the child’s primary care team as well as social workers, chaplains, child life specialists and other support staff.
The division has also branched out to establish roots in the Memphis community, collaborating with local partners to form the Quality of Life for All Kids Program to serve the needs of children who are suffering from complex chronic conditions.
Baker stresses the importance of involving families in every aspect of the division’s work—from strategic planning to the Quality of Life consult service.
Recent parent recommendations have included the addition of a professional to provide support for surviving family members and hospital staff after the loss of a child.
As the hospital’s new bereavement coordinator, Nancy Noyes personally relates to family members grieving the loss of a child. Her son, Matt, a former St. Jude patient, died in 2008 after a six-year battle with a brain tumor. Noyes brings to her position an extensive background in pediatric oncology, research, and child and adolescent psychiatry.
A new steering committee consisting of parents and St. Jude staff will train bereaved parents to serve as mentors and educators for other families and hospital staff. This committee will also help plan and develop the annual St. Jude Day of Remembrance event.
The team also works with other hospital programs on collaborative studies and has worked with the St. Jude International Outreach Program to educate staff at partner sites about quality-of-life issues.
The division has introduced a number of clinical trials, many of which focus on how the service affects patient outcomes and how it is being received by patients and families.
The team has made significant discoveries and has won national research awards in such areas as:
Developing a comprehensive program that serves as a model for other quality-of-life and palliative care programs throughout the world is an ongoing process. As the division grows, its staff seeks new ways to integrate care while educating clinicians, working with families and studying the impact of these methods on the lives of patients.
“All of these efforts combine to help kids have good days,” Baker says. “Our goal is to become a worldwide resource in finding the best ways to make that happen.”
Abridged from Promise, Spring 2013