PEDIATRIC END-OF-LIFE CARE: AVAILABLE SERVICES, CARE PROVIDERS’ EXPERIENCES, AND PATIENT NEEDS

Carolyn Whaite Calvin College Department of Nursing

I want to grow hair, I want to grow up, I want to go to Boise

“They reminded me of candles in the wind who accept the possibility that at best they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light” (Bombeck, 1989, p. xv)

Objective

The aim of this presentation is to increase knowledge and awareness of pediatric end-of-life care through a review of literature, examination of the theoretical concepts of “nursing” and “care” as related to the subject matter, and an outline for future teaching of the material

History of EOL care

Each year, over 55,000 children die in the United States and more than half of these children and infants die in inpatient settings (Carter, Howenstein, Gilmer, Throop, Franc, & Whitlock, 2004)

In 1983, only 4 of the 1400 hospices in the US accepted children. Since then, over 450 hospices have been started that have specific programs for pediatrics.

Available Services Palliative Care

Total care of patients whose disease is not responsive to curative treatment Care focused on relief of symptoms at the end of life

Hospice Care Introduced in the 1970’s Four concepts: family members are principal caregivers, priority of care is

comfort, family needs are as important as patient needs, concern with post-death adjustment

The goal of Hospice care is for children to live life to the fullest without pain, with choices and dignity, in the familiar environment of their homes, and with the support of their families.

Venues of Care Most patients would choose the home as the venue for end-of-life care Majority of deaths of pediatric patients occur in inpatient settings End-of-life care can be provided in an acute care setting, in the home, or in

a freestanding facility

Provision of nursing care Nursing:

Parse’s man-living-health model: guiding of individuals and families to share and uncover personal meaning of their living health situation

Watson’s model of human caring: a transpersonal process of caring that enables the client to find meaning in wellness, gain self-knowledge and control, and restore inner harmony for self-healing

Miller’s Christian theology of nursing: aim to foster health and bring comfort in suffering and death…nursing includes the comprehensive physical, psychosocial, and spiritual care of individuals in the context of families and communities

Pediatric end-of-life nursing is a call to meet families where they are, listen to their stories and participate in their suffering while caring for the integrated whole of each person and family

Care Merriam-Webster’s definition

1: suffering of mind : grief 2a: a disquieted state of mixed uncertainty, apprehension, and

responsibility b: a cause for such anxiety 3 a: painstaking or watchful attention b: maintenance 4: regard coming from desire or esteem

Care is recognition, action, and response to needs Pediatric end-of-life care consists of addressing the unique needs of the

patient-family unit, enhancing the quality of life for both the patient and family and addressing the physical, emotional, and spiritual needs of children and families

Searching for “The Dying Point:” Providers’ experiences with palliative care in Pediatric Acute Care Docherty, S., Miles, M., & Brandon, D.

•This study aimed to describe the experiences and view of health care providers giving care to children with life-threatening illness, particularly in identifying the critical point at which to switch from aggressive curative therapy to palliative care•Majority of participants viewed palliative care as “a changed dimension of care that is instituted once it is known that a child is dying”•Three challenges to initiating palliative care were identified including finding the true dying point, making the transition to palliative care, and turning the care over to an outside palliative care team.•The findings of the study support the future formation of an integrated model of palliative care that is initiated at diagnosis and allows for transitioning into palliative care

To Show Our Humanness- Relational and Communicative Competence in Pediatric Palliative CareBrowning, D.

•In end-of-life care, practitioners must be fully present to patients and families and have an obligation to nurture the relationship with them•Communication occurs in a social and cultural context and clinicians must be able to have a “foot in both worlds” (25)- in other words, they must be part of the culture of medicine but also be part of the culture of the family•“We need, above all, to be willing to show our humanness to children and families, just as they so readily show their humanness to us” (28)

Addressing Needs Needs of the Patient

Nursing care must take into account physical, emotional, and spiritual support Article: “Physical symptoms of children receiving pediatric hospice care at home during

the last week of life” Universal desire of parents was for their children to be pain-free 92% of children exhibited pain in the last 72 hours of life

The nurse must also provide emotional support to the patient and family and try to facilitate the expression of grief; the family and patient must be allowed to grieve and mourn

Faith may be a core part of the families coping efforts and the nurse must be able to facilitate any faith rituals or practices that may have a role in the dying process

Needs of the family Educational needs Sibling Support

Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents’ Priorities and RecommendationsMeyer, E., Ritholz, M., Burns, J., & Truog, R.

•The purpose of this study was to examine parent perspectives on improving pediatric end-of-life care and communication•When making decisions on behalf of their children, parents place the most importance on quality of life, likelihood of improvement, and the child’s pain and suffering•Parents identified six priorities of care at the end of life. These included complete information, access to staff, communication, emotional expression of staff, preservation of the parent-child relationship, and faith

End-of-Life Care Preferences of Pediatric Patients with CancerHinds, P., Oakes, L., Fouladi, M., Spunt, S., Church, C., & Furman, W.

•The perspective of the child at the end of life had not been investigated prior to this study. The study aimed at identifying the preferences of children and adolescents at the end of life regarding their end-of-life care.•Almost all participants in this study were able to accurately recall their treatment options and the likely outcome of each. Therefore, the children realized that they were involved in an end-of-life decision and understood the consequences of that decisions•The findings of this study support the ability of some pediatric patients at the end of life to participate in the complex decision making process related to their care

Ultimate aim in end-of-life care is a death with dignity for each and every patient

The nurse must ensure that the actions taken are congruent with the patient and family’s wishes

Nursing responsibilities in end-of-life care are extensive and include providing holistic care focused on the physical, emotional, and spiritual elements of each and every person.

“These children have a unique approach to their life-threatening illness. Instead of looking backward, they look forward…nothing is taken for granted. Not a friendship, not a kindness, not even tomorrow…A mother from Missouri put a notebook in her son Daniel’s room with blank pages and everyone who came into his room to administer some service to him was asked to outline his hand and sign his name. When Daniel left the hospital, he had a collection of forty-two hands- big hands, little hands, hands that mopped the room, hands that held the bowl when he threw up after anesthesia, hands that held a scalpel.” (Bombeck, 1989, p. 141)

References

1. Bombeck, E. (1989). I want to grow hair, I want to grow up, I want to go to Boise. New York: Harper & Row.2. Browning, D. (2002). To show our humanness- relational and communicative competence in pediatric palliative care. Bioethics

Forum, 18(3), 23-28.3. Calabrese, C. (2007). ACT for pediatric palliative care. Pediatric Nursing, 33(6), 532-534.4. Carter, B., Howenstein, M., Gilmer, M., Throop, P., France, D., & Whitlock, J. (2004). Circumstances surrounding the deaths of

hospitalized children: Opportunities for pediatric palliative care. Pediatrics, 114(3), 360-366.5. Davies, B., Collins, J., Steele, R., Pipke, I., & Cook, K. (2003). The impact on families of a children’s hospice program. Journal of

Palliative Care, 19(1), 15-26.6. Docherty, S., Miles, M., & Brandon, D. (2007). Searching for “the dying point:” Providers’ experiences with palliative care in

pediatric acute care. Pediatric Nursing, 33(4), 335-341.7. Ferrell, B. & Coyle, N. (2008). The nature of suffering and the goals of nursing. Oncology Nursing Forum, 35(2), 241-247.8. Hendricks-Ferguson, V. (2008). Physical symptoms of children receiving pediatric hospice care at home during the last week of

life. Oncology Nursing Forum, 35(6), 108-115.9. Hinds, P., Drew, D., Oakes, L., Fouladi, M., Spunt, S., Church, C., et al. (2005). End-of-life care preferences of pediatric patients

with cancer. Journal of Clinical Oncology, 23(36), 9146-9154.10. Hockenberry, M. & Wilson, D. (2007). Wong’s nursing care of infants and children (8th ed.). St. Louis: Mosby Elsevier.11. Ignatavicius, D. & Workman, L. (2006). Medical-Surgical nursing: Critical thinking for collaborative care (5th ed.). St. Louis:

Elsevier Saunders.12. Johnston, D., Nagel, K., Friedman, D., Meza, J., Hurwitz, C., & Friebert, S. (2008). Availability and use of palliative care and end-

of-life services for pediatric oncology patients. Journal of Clinical Oncology, 26(28), 4646-4650.13. Martinson, Ida. (1993). Hospice care for children: Past, present, and future. Journal of Pediatric Oncology Nursing, 10(3), 93-98.14. Meyer, E., Ritholz, M., Burns, J., & Truog, R. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit:

Parents’ priorities and recommendations. Pediatrics, 11(3), 649-657.15. Rini, A. & Loriz, L. (2007). Anticipatory mourning in parents with a child who dies while hospitalized. Journal of Pediatric

Nursing, 22(4), 272-282.16. Schindehette, S., Sheff-Cahan,V., & Dodd, J. (2005, October 31). A place to say goodbye. People Magazine, 69-72.17. Wasserman, L. (2007). Repectful death: A model for end-of-life care. Clinical Journal of Oncology Nursing. 12(4), 621-626.