Caring for Dying Children: Assessing the Needs of the Pediatric Palliative Care Nurse

Darla Morgan, BSN, RN

Disclosures

Pediatr Nurs. 2009;35(2):86-91. 

In This Article

Pediatric Palliative Care

Each year in the U.S., 55,000 children less than 20 years of age die, and many of these children experience a lengthy illness (Carter et al., 2004). Common diagnoses affecting the length of children’s lives include prematurity, congenital anomalies, sudden unexpected infant death syndrome (SIDS), chromosomal defects, trauma, neurodegenerative disorders, acquired immunodeficiency syndrome (AIDS), and cancer. Cancer remains the leading cause of disease-related death in children and adolescents. It is estimated that 25% to 33% of children with cancer die; the average number of cancer deaths in children is 2,200 per year in the U.S. (Himelstein, Hilden, Boldt, & Weisman, 2004). However, even with these statistics, children’s palliative care programs are not as prevalent as adult programs.

A possible reason for lack of pediatric palliative care programs may be that most people are just unaware of the need or just do not want to accept that children die. Children, the hope and the future of our society, are not supposed to die. The concept of a child dying before a parent is just too unbearable to imagine. There is something especially tragic about a life with unrealized potential coming to an end. Thus, family members, as well as health care workers, often deny the approaching death. The death and avoidance of its surrounding issues may also be reinforced by the uncertainty of the treatment outcomes in the pediatric population (Rushton, 2000).

A unique aspect of pediatric palliative care is the need to tailor all care around the developmental level or stage of each individual child. An example of this can be seen in the ethical and legal issues that arise in caring for a terminally ill teenager who, because of his chronological age, lacks the authority to make medical decisions, yet consensus supports giving him decisional authority because of his cognitive and emotional maturity (Freyer, 2004). Discussion of and advocacy for his life choices will look different from those offered to an adult, as well as those offered to a small child. Developmental level must be considered in pursuing effective communication with the younger child as well. The delivery of support and care must be age-appropriate and must be re-evaluated as children change through each developmental stage.

Another significant aspect of pediatric palliative care is the timing of its initiation. In adult palliative care, the patient must be considered terminal and in the last six months of life to qualify for palliative or hospice care programs. These requirements do not work well in the pediatric setting, as many of these children are still pursuing curative treatments at the time of their clinical deterioration and death. With the extended definition of pediatric palliative care to include care and support for life-threatening illness as well as for those who are at the end of life, pediatric palliative care should begin at diagnosis if death is clearly a possibility.

Support for Pediatric Palliative Care Programs. Literature identifies multiple and diverse barriers to good palliative care, including attitudinal, clinical, educational, institutional, regulatory, and financial barriers (Rushton & Catlin, 2002). However, significant change is on the way, as evidenced by the formation of national and even international task forces that are attempting to develop policies and protocols to address needs of children with life-threatening illnesses. The Children’s International Project on Palliative and Hospice Services (ChiPPs), which is composed of leading international experts in the field of pediatric palliative care, was established to promote research in pediatric hospice and palliative care (Davies, Brenner, Orloff, Sumner, & Worden, 2002).

The year 2000 marked the formation of the nursing leadership academy in end-of-life care, which is composed of leaders from 22 national organizations, and was created by the Institute for Johns Hopkins Nursing and funded by a grant from the Open Society’s Project on Death in America. This group issued a statement that supported palliative and end-of-life (EOL) care across the lifespan (Bowden, 2002). The neonatal end-of-life palliative care protocol established a plan to create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, and family/staff-supported death for newborns (Catlin & Carter, 2002). The National Alliance for Children with Life-Threatening Conditions brought together change agents and leaders in the field of pediatric hospice and palliative care (Sumner, 2003). This group is expected to evaluate current pediatric palliative care programs, identify problems, and work toward continuous program improvement.

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