Pediatrics

INTRODUCTION

One of the greatest losses for an individual and the community is the death of a child. When children face life-limiting illnesses, the health care system, the family, and the community will most likely do anything and everything to preserve their lives. Despite these efforts, children still die, and they often do so without the benefit of hospice or palliative care, which could ease their suffering.

In 1999, 409 infants under the age of one and 424 children between the ages of one and nineteen died in Minnesota. For infants, the leading cause of death was attributed to conditions originating during the perinatal period. Accidents were the leading cause of death for those over one year, followed by suicide, malignancies, homicide, heart disease, and congenital anomalies (Minnesota Department of Health, n.d.). For children with life-limiting illnesses end of life the expertise and resources are scarce in Minnesota and include only one pediatric focused hospice program.

Interviews and discussions conducted by Partnership staff with health care professionals and community members in both the metropolitan area and greater Minnesota indicate a strong need for palliative care resources for children. Interviewees and discussion participants identified increased services, education, and resources for pediatric end of life care as an area of health care that needs improvement.

While the numbers are small, provision of high-quality end of life care for children is problematic for a number of reasons (ChIPPS, 2000):

• The developmental age of the child affects the way treatment, the disease process, and death are approached by health professionals.

• The verbal skills of the child may be limited, making pain and symptom assessment and management difficult.

• Many children receive very aggressive technological interventions in hopes of prolonging life and finding a cure.

• Often siblings are involved and their care adds additional stress to overtaxed parents and family members.

• Parents must make the ultimate decisions on treatment, which can cause difficulties and emotional distress if the child does not agree with the parent.

As in the care of adults who are dying, the medical reimbursement system favors aggressive and curative treatment. It’s easier to obtain coverage for a test or procedure than to obtain coverage for a therapeutic discussion with parents about palliative care options.

The inadequacy of pediatric palliative care has been documented in a number of studies. In a recent study of 103 children who died of cancer, researchers determined that 89% of the children suffered "a lot" or "a great deal." They also found that treatment for pain was successful only 27% of the time (Stephenson, 2000). Hospice care is not utilized often for children. In fact, only 1% of children with life-limiting illnesses receive hospice care (Stephenson, 2000).

Often health care providers are not adequately trained for pediatric end of life care. In a 1998 survey of 228 pediatric oncologists, 91% stated that they learned to care for dying children through trial and error on the job. Only 2.2% said they had a hospice or palliative care rotation during their schooling (Hilden et al., 2001). Pediatric oncology nurses and physicians often express misgivings about their abilities in communicating with children at the end of life, discussing advanced directives with families, and relieving pain and other symptoms (Duncan et al., 2000).

Experts emphasize the need for a definition of the end of life for children. Families have stated that the time of crisis for a child with a life-limiting illness is the point of diagnosis (Stephenson, 2000). This is when the most emotional issues arise and when questions of treatment and payment options are most confusing and challenging.

"Children need time to prepare for death, too."
~ Chaplain from Rochester’s Mayo Clinic

The Children’s International Project on Palliative/Hospice Services (ChIPPS) identified three principles of pediatric palliative care. The principles are similar in intent and content to the Five Guiding Principles for End of Life Care with a few provisions specific to children (ChIPPS, 2000):

Principle 1

Palliative care programs should not require a short-term prognosis of death, but merely the criteria that the child will not survive to adulthood.

Principle 2

Children and their families are the unit of care and they should have access to a consistent interdisciplinary team of caregivers twenty-four hours a day every day.

Principle 3

Families should be able to refer themselves to a pediatric hospice or palliative care program.

Health care organizations that care for children and their families when a child has a life-limiting illness should provide appropriate services and resources in conjunction with the Five Guiding Principles to Improve End of Life Care and the Universal Principles of Pediatric Care. In an effort to achieve improved care, people knowledgeable on pediatric issues should help facilitate and implement the creation of a central pediatrics palliative care resource center in Minnesota, using public and private funds. The resource center should provide:

• Telephone consultation services for health professionals, including doctors and nurses

• Information for parents and family on care and resources

• Information for health professionals on care and resources

• Education opportunities for student and practicing health care professionals

In addition, the Commission recognizes the need for comprehensive insurance coverage that includes adequate reimbursement for interdisciplinary palliative care and palliative care consults.

Improvements in the care of children should come from both the health care organizations through increased and better prepared interdisciplinary pediatric palliative care teams, as well as from the community via funding for a central resource on pediatric end of life care.