Caring for the Dying Child Danielle Bauer Frank Dziobek Dan Keller N240 – Assessment of Human Responses I Prof. Kim Cox University of San Francisco June.

Caring forthe Dying Child

Danielle Bauer

Frank Dziobek

Dan Keller

N240 – Assessment of Human Responses I

Prof. Kim Cox

University of San Francisco

June 23, 2005

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

Ages 1-4

Rank Mortality No. Rate*

1 Unintentional injury** 1,898 12.6

2 Congenital anomalies 549 3.6

3 Malignant neoplasms 418 2.8

4 Homicide*** 376 2.5

5 Diseases of the heart 183 1.2

Total (all causes) 5,249 34.7

Ages 5-9

Rank Mortality No. Rate*

1 Unintentional injury** 1,459 7.3

2 Malignant neoplasms 509 2.6

3 Congenital anomalies 207 1.0

4 Homicide*** 186 0.9

5 Diseases of the heart 116 0.6

Total (all causes) 3,474 17.4

Ages 10-14

Rank Mortality No. Rate*

1 Unintentional injury** 1,632 8.3

2 Malignant neoplasms 503 2.6

3 Homicide*** 246 1.3

4 Suicide 242 1.2

5 Congenital anomalies 221 1.1

Total (all causes) 4,121 21.1

Ages 15-19

Rank Mortality No. Rate

1 Unintentional injury** 6,688 33.9

2 Homicide*** 2,093 10.6

3 Suicide 1,615 8.2

4 Malignant neoplasms 745 3.8

5 Diseases of the heart 463 2.3

Total (all causes) 13,778 69.8

Why Children Die and at What AgesTop 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.

Danielle:Caring for the Family

Caring for the family• Preparation for death should

begin with child’s diagnosis• Major areas of concern

–Physical Care–Emotional Care–Spirituality–Practical Care

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

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

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

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

Stay Involved!

• Attend funeral or memorial services

• Follow up on the family regularly

• Send cards to mark the birth or death of the child.

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

Dan:Caring for the Child

What Do Dying People Need?

• Comfort and quality of life• Nutrition• Hygiene• Posture• Mobility• Skin care• Self-image• “Living while dying"• Palliative care

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

What Do Dying Children Need?Goal Examples of Care

Physical comfort

•Pain relief (medications, behavioral interventions)•Physical therapy, massage, acupuncture: improve function, relieve pain

Emotional comfort

•Psychotherapy, parental presence, relaxation, imagery, distraction, hypnotic suggestion, play, storytelling, drawing, writing, music•Visits from family and friends

Normal life •Even very sick children find pleasure in play, friendship, school, activities of normal life•It's best if they can be at home in familiar surroundings•Information, involvement in decisions•Return to school•Travel or camp•Older children can communicate with friends by telephone and email•Internet sites such as Starbright World (www.starbright.org) enable sick children to share their experiences of illness and support one another

Family

functioning

•Special time for siblings•Respite for parents

Cultural,

spiritual

•Religious rituals and traditional customs•Family holiday traditions

Preparing for death

•Plan for parents, siblings, others to be with the child at and after death•Plan for remembrances, legacies of the child’s life

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.

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

Frank:Caring for the Nurse

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

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

Symptoms of Grief

• Physicalinclude fatigue, insomnia, headache

often mimic burnout or stress

• Emotionalfeelings of inadequacy, hopelessness and

impotence

• Spiritualquestion faith & belief systemmeaning of life

Strategies to cope with Grief

• Support– Processing & Debriefing– Friends & Pets

• De-stress Days• Education and Training

– Grieving Workshops

• Self Care Techniques– N 240

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

ReferencesDavis, 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/