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Pediatric Palliative Care
An Interview with Barbara L. Jones, Ph.D., MSW

Barbara L. Jones, Ph.D., MSW, is President, Association of Oncology Social Workers, Assistant Professor, School of Social Work and Co-Director, The Institute for Grief, Loss and Family Survival, at the University of Texas at Austin.  

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Questions

1: Why have you chosen pediatric palliative care as the focus of your professional work and how relevant is this to the overall state of health care in the US?

2: How important is it be aware of a child’s developmental issues, and can you separate treatment for the child from treatment of the family of the child in pain?

3: Are there pain treatment techniques that are more successfully used in pediatrics than with adults.

4: Where can clinicians who do not specialize in pediatrics turn for information when treating a child in pain?

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Evelyn Corsini:

Why have you chosen pediatric palliative care as the focus of your professional work and how relevant is this to the overall state of health care in the US?

Barbara L. Jones, Ph.D., MSW: As a practicing pediatric oncology social worker I have long been involved with children and families from diagnosis through their survivorship or their care at the end of life when cure is not possible. It is widely know that despite good intentions, the health care system in the US has not met the challenge of providing good symptom management and psychological and spiritual support at the end of life. The Institute of Medicine developed reports that detailed this in 1997 (Approaching Death; Improving Care at the End of Life) and in 2001 (Improving Palliative Care for Cancer), which have led to numerous initiatives for change.

Pediatric palliative care has only recently received widespread attention. Two publications that received a great deal of notoriety helped fuel the movement for change in pediatrics. In February, 2000, The New England Journal of Medicine carried a special article written by Joanne Wolfe, M.D., M.P.H., and others affiliated with the Dana Farber Cancer Institute in Boston, entitled “Symptoms and Suffering at the End of Life in Children with Cancer.”1 The description of children suffering and experiencing pain and psychosocial symptoms was a strong call for greater attention to palliative care for children. In 2003, the Institute of Medicine issued their report “When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families,”2 which built on their two earlier reports and spearheaded many more changes.

One of the key messages of the 2003 IOM report was:

“current methods of organizing and financing palliative, end-of-life, and bereavement care compromise the provision and coordination of the best mix of services to help children and families, and sometimes present families with cruel choices between curative or life-prolonging care and certain palliative services, in particular, hospice care.”3

My own experience in the late 1990’s was similar to what other pediatric providers had decided to do; we informally built a team with a pediatric oncologist, a nurse and social worker to develop a “mini” palliative care program at our hospital. This was very well received as other care providers were grateful for the focused attention on this need.

EC: How important is it be aware of a child’s developmental issues, and can you separate treatment for the child from treatment of the family of the child in pain?

BJ: Care for children is so different from care for adults because of their age-related developmental issues. It is always important to start with a developmental assessment when making a treatment plan. One of the key issues is that children cannot legally consent to their own pain and symptom management. With younger children we need to understand and listen to how they communicate their pain in age-appropriate ways. Sometimes interactive play is a much more useful tool than language. We need to listen to children and their parents to assess their fear, anticipation, pain, anxiety, and discomfort to provide the best possible relief in a timely way.

It is impossible to separate the child from the family. Work with a child in pain requires a team approach with the family as part of the team. If the child and parents have different wishes and goals this can lead to an ethical dilemma for the clinician. It is important to understand who makes the decisions in the family and how their culture defines pain, health and healing.

EC: Are there pain treatment techniques that are more successfully used in pediatrics than with adults.

BJ: Yes, there are definitely techniques that are very successful in the pediatric population. It is critically important that the child’s care providers, such as the nurse, social worker, and child life specialist know these techniques and can support the family to use them. Children respond very well to guided imagery and do very well with hypnosis. Visualizing a safe, warm place, and slowing their breathing, are standard methods. Advance preparation is very important as children can be easily traumatized. They know that they can’t stop what is being done to them. Giving them the skills to better manage such trauma is extremely important. I have seen success with the use of reiki, meditation, and massage. Certainly diversion is a standard technique, and a whole new area of research has developed which is looking at the use of computerized games to help children with chronic illness or chronic pain cope better.

EC: Where can clinicians who do not specialize in pediatrics turn for information when treating a child in pain?

BJ: There are many professional organizations that disseminate information about pain management specific to children, including the American Pain Society and the Association of Pediatric Oncology Nursing. The International Association for the Study of Pain Core Curriculum for Professional Education in Pain contains a referenced list of issues around pain in infants, children, and adolescents.

The Initiative for Pediatric Palliative Care (www.ippcweb.org) is a national program whose goal is to train care providers. They have developed a free online curriculum, with six modules aimed at enhancing family-centered care for children with life-threatening conditions. Modules include a printable facilitator’s guide and PowerPoint presentations. There are also videotapes available for purchase. The module titled “Relieving Pain and Other Symptoms” has among its 7 content areas: “Developmental Factors in Pain Assessment and Treatment”, “Pain Assessment in the Absence of Self Report”, “The Safe and Effective Use of Opioids to Manage Pain”, and “Addressing Parents Fears about Opioid Analgesia”.



1 Wolfe, J., Grier, H., et. al. “Symptoms and Suffering at the End of Life in Children with Cancer”. NEJM, 2000. Vol. 342:326-333.

2 Field, M. J. and Behrman, R.E. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. 2003, National Academies Press, Washington, D.C.

3 When Children Die; Improving Palliative and End-of-Life Care for Children and Their Families, http://www.iom.edu/CMS/3740/4483.aspx?printfriendly=true, retrieved 2/22/07.

 

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