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Pediatric End-of-Life Care - Compassion and Caring

1.0 Contact Hours
Target Audience: Nurses, healthcare professionals, and interested individuals
Purpose/Goal: The outcome of this course is for the learner to explain important factors relating to caring for parents and a dying child, including symptom management and compassionate spiritual care of a dying child.
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The death of a child is a devastating event with long-lasting effects on family, friends, and health care providers. While pediatric death rates in the United States have declined in the last century, pediatric death remains a critical health care issue. Often parents and children do not receive the care they deserve and require during this challenging time.

Upon completion of the course, you will be able to do the following:

  • Describe the epidemiology of pediatric end of life.
  • Differentiate between hospice care, palliative care, and end-of-life care.
  • Explain important elements of care related to pediatric symptom management at the end of life.
  • Discuss factors to consider when caring for parents and a dying child.
  • Explain facets of the spiritual care of the dying child.
  • Identify future directions for pediatric palliative care. Identify special issues related to end-of-life care and the pediatric patient.

"You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die."

— Dame Cicely Saunders

The death of a child is a special, deep, and profound sorrow. “When a child dies, dreams die and we are all diminished by the loss of human potential” (Field & Behrman, 2003, p. xv).

Death is a relatively rare occurrence among children but it can have a devastating and enduring impact on surviving mothers, fathers, brothers, sisters, other family members, and close friends. “No matter the circumstances, a child’s death is a life-altering experience” (Field & Behrman, 2003, p. 1). In modern society, children are expected to outlive their parents. Yet, in the United States, of the approximately 2.5 million deaths that occur annually, about 43,000 deaths are attributed to infants and children (Friebert & Williams, 2015). Most of these deaths are due to trauma, lethal congenital disorders, or acquired illness (American Academy of Pediatrics [AAP], 2000; U.S. Department of Health and Human Services [USDHHS], 2011).

Children (ages 0–19 years) account for approximately 2% of all deaths in the United States—a stark difference from the year 1900 when children under 5 years of age accounted for 30% of all deaths (Friebert & Williams, 2015). While the pediatric death rate has declined in the United States due to socioeconomic, public health, and medical advances, the death of a child “violates the natural order and is always ‘out of season’” (Meyer, Ritholz, Burns, & Truog, 2006, p. 650).

Questions about what constitutes quality end-of-life care for children remain inadequately answered (Meyer et al., 2006). Children with fatal or potentially fatal conditions and their families often fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs. Although it is a rare occurrence, it is important to acknowledge that death does occur in pediatrics and it is important to provide these children and their families with compassionate end-of-life care within a family-centered and developmentally appropriate environment. Because of this need, there has been an increasing emergence of pediatric palliative and end-of-life care services throughout the United States (Crozier & Hancock, 2012; Field & Behrman, 2003; Meyer et al., 2006).

Ideally, when a death is expected, do-not-resuscitate (DNR) orders are in place and a planned withdrawal of support can occur, facilitating a more peaceful death for the patient and family. Other times, death is unexpected, occurring because of an accident or unsuccessful resuscitation (Roberts & Boyle, 2005). Because the causes of death for children are substantially different than the causes of death for adults (cancer, cardiovascular disease, diabetes, homicide, stroke, and respiratory disease), end-of-life guidelines that are appropriate for adults are often not appropriate for children (Centers for Disease Control and Prevention, 2010).

The American Academy of Pediatrics (2000) suggests:

For children living with life-threatening or terminal conditions, medical professionals are obligated to ensure that medical technology is used only when the benefits for the child outweigh the burdens (such as extremely high costs, undue pain and suffering, and no assurance of a cure). An infant or child will benefit from palliative care when no treatment has been shown to alter substantially the expected progression toward death. (p. 351)

An integrated model of palliative care provides support from the moment of diagnosis and continues throughout the course of the illness. It is often difficult to determine which children will benefit from palliative care because time of death is challenging to predict. If palliative care is only reserved for children who are dying or have a terminal condition, other patients who may benefit from the services may not receive them. The trend is for a broader definition of care that includes children living with life-threatening conditions so all children who need palliative care will benefit. The assumption that there is no place for palliative care until all curative options have been exhausted can interfere with an early discussion of palliative issues and may place an undue burden on the child and family (AAP, 2000).

Complete the course post exam (CE Test) with a score of 80% or greater. Complete all fields of the course evaluation form. Certificate of Completion is provided once the course post exam is passed per criteria above.

  • American Board of Managed Care Nursing
  • ANCC - American Nurses Credentialing Center
  • AOTA - American Occupational Therapy Association
  • ASWB - Association of Social Work Boards
  • California Board of Behavioral Sciences
  • California Board of Registered Nursing
  • California Department of Health, Aid, and Technician Certification Section
  • District of Columbia Board of Nursing
  • Florida Board of Nursing
  • Florida Board of Nursing - Certified Nursing Assistants
  • Florida Board of Respiratory Care
  • Florida Council of Dietetics and Nutrition
  • Florida Council of Licensed Midwifery
  • NAADAC - The National Association of Alcohol and Drug Abuse Counselors
  • NCBTMB -National Certification Board for Therapeutic Massage & Bodywork
  • Florida Board of Massage Therapists


Practice Level:


Content Focus:

Domain of OT

Course Expires:

May 30, 2019

  • Cyndie Koopsen, RN, BSN, MBA, HNB-BC, RN-BC, HWNC-BC
  • Caroline Young, MPH
Jurisdictional Requirements:

Continuing education (CE) licensing requirements vary by jurisdiction, are not well defined, and may change. These CE requirements may vary in terms of the number of hours required to the types of courses that must be taken. ALLEGRA Learning Solutions, LLC recommends you contact your licensing board or accrediting organization for the latest continuing education requirements of your state or territory. Compliance with CE requirements is the responsibility of the individual health care provider. Health care providers must understand the CE requirements in their jurisdictions, and be sure they are up-to-date on any rule changes that affect their license. For further information, please see our Accreditation Information.

Accommodations for Disabilities:

Every effort will be made to accommodate your special needs. To request accommodations, please contact us.

Conflicts of Interest and Relevant Financial Relationships:

The authors/planning committee members have no conflicts of interests or relevant financial relationships to declare relevant to this activity.

Commercial Support:

No commercial support has been received for this activity.

Non-endorsement of products:

Accreditation refers to recognition of continuing nursing education only and does not imply ALLEGRA Learning Solutions, LLC approval or endorsement of any commercial product.

Off-label Use of Products:

None of the authors intend to discuss off-label uses of drugs, mechanical devices, biologics, or diagnostics not approved by the FDA for use in the United States.