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NIH to Fund Pediatric Palliative Care Research

Kate Traynor

Providers of pediatric palliative care have an opportunity to apply for National Institutes of Health (NIH) funding to support research on improving the care of dying children and their families.

Patricia A. Grady, director of NIH's National Institute of Nursing Research, announced during a July 30 press conference in Washington, D.C., that her institute and the National Institute of Mental Health will fund pediatric palliative care grants totaling up to $2.5 million next year.

"The needs and the issues of dying children have not been singled out and have not been a...focus of investigation until this point," Grady said. She added that the purpose of the grants is "to stimulate research to include a focus on the quality of the dying process of children and on bereavement issues for children, families, and others, including health team members."

ASHP Endorses Blueprint
for Palliative Care

ASHP last month endorsed the palliative care principles espoused by Last Acts, a diverse coalition of organizations that support improvements in the care of children with life-threatening illnesses.

In its blueprint for pediatric palliative care, "Last Acts, Precepts of Palliative Care," the coalition defined five critical goals:

  • Respecting the patient and the family's goals, preferences, and choices. This precept calls for family-centered care that involves family members in medical decisions and respects families' culture and beliefs.  
  • Relieving childrens' pain and other symptoms, including emotional distress.  
  • Creating multidisciplinary teams of physicians, nurses, social workers, psychologists, pastoral counselors, and others to meet all of the families' needs, including spiritual and psychological needs.  
  • Recognizing that families, especially those with other children at home, may need respite care and babysitting services. Caregivers must be aware that family members who care for a dying child are at risk for fatigue and illness.  
  • Using research, innovation, education, and information sharing to build palliative-care support networks, and working to improve public policy and reimbursement mechanisms to support palliative care.

According to federal statistics, more than 50,000 children under 18 years of age die each year in the United States. The Institute of Medicine (IOM), in its recent report When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, declared that "too often, children with fatal or potentially fatal conditions and their families fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs."

The IOM report is the impetus for the NIH grant program, which will fund both individual research project grants (R01) and exploratory grants (R21). For exploratory grants, NIH will provide up to $125,000 per year for three years or less. R01 grants are funded for up to five years for as much as $340,000 per year.

According to NIH, the grant application process is open to anyone with the "skills, knowledge, and resources necessary to carry out the proposed research." Applicants can be affiliated with for-profit and nonprofit groups; public or private institutions, including hospitals; eligible federal, state, and local government agencies; and faith-based organizations. Areas of research suggested by NIH include:

  • Testing ways to integrate palliative care with life-prolonging therapy in children with a life-threatening illness,  
  • Evaluating the role that health care providers play in the lives of dying children, especially when care shifts from curative to palliative,  
  • Finding ways to help children cope with hair loss, fatigue, medication regimens, and other noticeable signs of treatment.

The full request for applications is available online. Grant applications are due by Nov. 22.

During the July 30 press conference, Galen Miller, executive vice president of the National Hospice and Palliative Care organization, said that more than 3,500 hospice and "defined palliative care programs" exist in this country, but most provide services for only a few children. Of those that do provide such care, she said, "they want to do it better, and they want to do it more effectively."

"Most caregivers," Miller noted, "have received little or no training in palliative care, especially palliative care for children."