Caring for the Dying Child

1. N240 – Assessment of Human Responses I Prof. Kim Cox University of San Francisco June 23, 2005 Caring forthe Dying Child Danielle Bauer Frank Dziobek Dan Keller

2. Caring for the Dying Child • Though only 2% of deaths in the US each year are of children age 18 and younger, the emotional impact is large. • We discuss: • Why kids die • What do dying people need? • What do dying children need? • Caring for the family • Caring for the child • The nurse’s role

3. Why Children Die and at What Ages Top Five Causes of Death in Children, Death Rates, and Total Deaths (1999) * Per 100,000 population in age group. **Unintentional injury: mostly car accidents. ***Homicide: mostly firearms.

4. Danielle:Caring for the Family

5. Caring for the family • Preparation for death should begin with child’s diagnosis • Major areas of concern • Physical Care • Emotional Care • Spirituality • Practical Care

6. Physical Care • Need to involve family in every aspect of care plan • Parents/Guardians take on the majority of children care needs • Wellbeing of family members must also be watched

7. Emotional Care • Maintaining and redefining hope as the child’s illness progresses • Anticipatory grief (long term illness) • Meaning through preparation for death • Siblings and other family members

8. Spirituality • Important to asses family’s spirituality • Provide support for any rituals or counseling requested • Consider this when caring for the child’s body after death

9. Practical Care • As one father said “It’s like you suddenly have a new small business to figure out and run on top of everything else going on.” • Needs vary greatly • Assistance with everything from help finding funding for care to planning the details of the funeral

10. Stay Involved! • Attend funeral or memorial services • Follow up on the family regularly • Send cards to mark the birth or death of the child.

11. Additional Information • Important to keep lines of communication open • Honesty and compassion • Care for the family should begin with the child’s diagnosis and continue after the child’s death • Healthcare professionals should seek out additional training for palliative care

12. Dan:Caring for the Child

13. What Do Dying People Need? • Comfort and quality of life • Nutrition • Hygiene • Posture • Mobility • Skin care • Self-image • “Living while dying" • Palliative care

14. Palliative Care • Focus on quality of life • There can be joy and hope amidst the sadness and grief • Good symptom control • Whole-person approach: consider the dying person’s life experience and current situation • Consider also the other people who matter to that person • Support autonomy and choice • Emphasize open and sensitive communication with patients, family, colleagues • Managing pain: the WHO analgesic ladder for pain relief

15. What Do Dying Children Need?

16. Home Care • Home care of a child with a progressive condition makes huge demands of parents and family. • Provide care around the clock. • Administer medications. • Learn and do nursing tasks such as nasogastric feeds and home ventilation. • Nutritional needs change. • Illness reduces dietary intake and tolerance. • It’s difficult for parents to accept limitations in fulfilling their parenting role of nourishing their child. • They must manage associated symptoms. • nausea, vomiting, diarrhea, constipation, disinterest in food, side effects of medications, changes in muscle tone, reduced mobility • Parents must reconcile their dual roles as parent and nurse. • They can become anxious, exhausted, and stretched financially. • Yet many describe the experience as positive. • They are pushed to learn things and to achieve goals unthinkable otherwise. • They find appreciation of life and understanding of what is really important.

17. Meeting the Child's Needs • Each child requires an individual assessment and care plan. Consider: • cognitive capacity • personality • past medical experiences • Family observations are essential in recognizing and evaluating the child’s physical distress. • particularly for younger children • Decision making • when possible, involve the child • emotional support is needed for decisions to start and end burdensome treatments (surgical procedures, chemotherapy, radiotherapy) • parents may insist on treatment that health professionals view as inappropriate • parents may refuse treatment of potential benefit to the child • children’s ability to make informed choices depends on their life experience and developmental level • plan care in advance to avoid decision making in a crisis

18. Frank:Caring for the Nurse

19. Nurses grieve too Grief of the Nurse is often overlooked Nurses are often unaware of signs of grieving in themselves Experience with death is limited Little training in After Death Care

20. What is different about a Child Dying? • Children are innocent - their Death is particularly unfair • Children can form strong bonds in a short amount of time • Children have few self-defenses

21. Symptoms of Grief • Physical include fatigue, insomnia, headache often mimic burnout or stress • Emotional feelings of inadequacy, hopelessness and impotence • Spiritual question faith & belief system meaning of life

22. Strategies to cope with Grief • Support • Processing & Debriefing • Friends & Pets • De-stress Days • Education and Training • Grieving Workshops • Self Care Techniques • N 240

23. Conclusion • Caring for children through the dying process is in many ways like caring for adults… • And in many ways different. • The care plan must consider the needs and contributions of: • The nurse • The family • The child

24. References Davis, B., Cook, K., O’Loane, M., Clarke, D. MacKenzie, B., Stutzer, C., Connaughty, S., McCormick, J. (Nov/Dec 1996). Caring for dying children: Nurses’ experience. Pediatric Nursing. 22. 500-507. Field, M. J. and Behrman, R. E. (Eds.). (2003). When children die: Improving palliative and end-of-life care for children and their Families. Washington D.C.: The National Academies Press. Hynson, J.L., Gillis, J., Collins, J. J., Irving, H. and Trethewie S. J. (2003). The dying child: how is care different? [Electronic version]. Medical Journal of Australia, 179, S20-S22. Irish Nurses’ Organization (July/August 2002). Pediatrics: Palliative care of the dying child. 10.7. Retrieved on June 13, 2005, from http://www.ino.ie/DesktopModules/Articles/ArticlesView.aspx?TabID=388&ItemID=2955&mid=7495 Toce, S., & Collins, M. A. (December 2003)The Footprints model of pediatric palliative care. Journal of Palliative Medicine. 6. 989-1000. World Health Organization, Geneva. (2003). Palliative Care:  Symptom Management and End-of-Life Care, Integrated Management of Adolescent and Adult Illness, guidelines for health care workers in low-resource settings. Retrieved June 12, 2005, from http://whqlibdoc.who.int/hq/2004/WHO_CDS_IMAI_2004.4.pdf http://www.starbright.org/