July 9, 2012 | Posted By Jane Jankowski, LMSW, MS

Historically, palliative care has not been associated with pediatrics. In western societies children are expected to outlive their parents, and we prefer to avoid the sad reality that kids do sometimes die. This social dismay could, in part, explain why the development of palliative care programs for children has lagged behind the adult programs. Not to be confused with Hospice, palliative care is a medical specialty which focuses on symptom management for patients with serious, often life threatening, illnesses. Admission to most Hospice programs requires a six month maximum life expectancy, whereas palliative care may be offered alongside curative treatments to alleviate burdensome side effects and symptoms. In the US, the passage of The Patient Protection and Affordable Care Act of 2010 has improved access to end of life care for children because the legislation permits concurrent coverage of medical treatment and Hospice services. Though a significant step forward, gaps in service may remain because children can live longer with serious illnesses and not meet the six month life expectancy criteria required for admission to a Hospice program. A better prognosis ironically leaves them without access to Hospice’s aggressive symptom management and compassionate, holistic care model. Pediatric palliative care services are emerging to meet the needs of children who have life limiting conditions, but are not expected to die in six months or less. Perhaps the most important feature is that palliative service can be provided alongside treatments for serious illnesses with very good prognoses. 

Until recently, comprehensive end of life care rarely existed for pediatric patients. The first hospice for children opened in the UK in 1982, well behind the initiation of the hospice movement in the UK which began in the late 1960’s with the under Dame Cicely Saunders. Following the UK’s lead, the first hospice program in the US opened in the early to mid 1970’s; however Hospice and palliative care geared to children did not emerge until the late 1990s and early 2000’s in the US. Today, programs continue to emerge to meet the needs of children with serious illnesses, but do not necessarily require Hospice services. The Children’s Project on Palliative/Hospice Services (ChiPPs) has provided significant contributions to the field of palliative care for children since the organization’s establishment in 1998 by offering information and education to providers and families. (National Hospice and Palliative Care Organization n.d.)

The intensity of emotion surrounding the care of a child with serious, complex life limiting health problems affects the entire family constellation and few medical specialties have the range of services under one umbrella to address the scope of needs presented in such cases on a continuous basis.  Multidisciplinary palliative care services specifically designed for pediatric patients strive to meet these needs. Workers from various disciplines join together with families to provide comprehensive medical, psychosocial, and spiritual care to the children and their families. With comprehensive, holistic program models, pediatric palliative care services may be uniquely poised to give seriously ill children and their families just what they need – support in providing quality time for as long as possible.

The Alden March Bioethics Institute offers graduate online masters in bioethics programs. For more information on the AMBI master of bioethics online program, please visit the AMBI site.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.