A phone call came from a nurse about a 3-year-old male. She was calling to inform the physician that the child had died quietly in the early hours of the morning with his family.
The funeral home had already been called and would be contacting the physician to sign the death certificate. The funeral arrangements were not completed at this time.
The past medical history reveals that this child was diagnosed with lissencephaly at age 9 months after he had a seizure. The parents also noted he was behind in his development.
Because of aspiration and subsequent pneumonias, he had a fundoplication and gastrostomy tube placed. His general overall health declined over time and after a long hospitalization a few months ago, it was decided with the family and the medical team, that
in the future he would be treated at home. His family’s home health agency had worked with several palliative care agencies including one for children.
The palliative care agency worked with the family, neurologist, general pediatrician, and home health agency to develop a comprehensive plan for treatment including pain management, nutrition, treatment for medical contingencies such as another infection, bereavement support for the patents and older children, end of life arrangements, and medical insurance.
About 1 week ago, he had increased respiratory distress and a fever. He received oral antibiotics and oxygen. He also appeared to have some pain and this was controlled by injected morphine sulfate. Last evening his breathing began to be more shallow and his heart rate decreased. He died in the early morning.
Lissencephaly is caused by abnormal migration of cortical neuroblasts and the cerebrum fails to sulcate properly. Children may have micro- or macrocephaly, seizures and mental retardation. Other migration problems include pachygyria, where the cerebrum has large, broad gyri with too few sulci, or polymicrogyria where the cerebral surface has many small crevices. All can exist in the same brain. All three disorders have cortical lamination abnormalities.
When many people think of palliative care for children, they often think of children with cancer. Almost every pediatric specialty has a need for pallative care for some of their patients. For example, children with congenital heart disease, cystic fibrosis, short bowel syndrome, chronic renal disease, muscular dystrophy, thalessemia, etc. all may need pallative care at some time.
According to the American Academy of Pediatrics, palliative care “seeks to enhance quality of life in the face of an ultimately terminal condition. Palliative treatments focus on the relief of symptoms (e.g. pain, dyspnea) and conditions (e.g. loneliness) that distress and detract from the child’s enjoyment of life. It also seeks to ensure that bereveaved families are able to remain functional and intact.”Hospice care is a group or package of palliative care services that is provided by a multispecialty team which often includes physicians, nurses, chaplains, health aids, and bereavement counselers. Hospice care is generally provided for a limited per day rate.
The palliative care plan that is right for each child and family is absolutely unique. The plan also may change with time as the child and family go through the dying process. Active listening to the child and family is required to develop and modify a plan focusing on what interventions will be the most beneficial. The child can participate to the extent that their developmental capability, illness and level of consciousness allow. Listed below are areas which should be addresed in a pallative care plan and some examples. The full table can be found in To Learn More below.
Palliative Care Essential Elements include:
- Physican Concerns
- Identify pain and other symptoms
- Have pain and emergency medication available
- Have oxygen available
- Psychosocial Concerns
- Identify fears and concerns
- Identify coping and communication styles
- Discuss previous experiences with death, dying
- Assess resources for bereavement support
- Adjust plan to blend with child and family’s copying and communication style
- Assure child and family they will not be abandoned
- Spiritual Concerns
- Spiritual assessment including understanding child’s hopes, dreams, life meaning, etc.
- Consider referring child and family to culturally appropriate spiritual advisor
- Advance Care Planning
- Identify decision makers
- Discuss illness trajectory
- Identify goals of care
- Think about issues regarding care or concerns near end of life
- Communication decision-making with entire team
- Identify probable time of death
- Provide anticipatory guidance about physical changes around time of death
- Practice Concerns
- Communication and coordination with health care team
- Establish preferences for location of care
- Become familiar with child’s home/school
- Address child’s current and future functional status
- Inquire about financial burdern
- Create plan for location of death, contacts at time of death, pronouncement of death
- Visit care sites such as school to provide education and support
- Order medical equipment such as commode, wheelchair, etc.
- Offer financial assistance
Questions for Further Discussion
1. What are some of the problems with access to pediatric palliative care?
End of Life Issues
Head and Brain Malformations
To Learn More
To view pediatric review articles on this topic from the past year check PubMed.
Information prescriptions for patients can be found at Pediatric Common Questions, Quick Answers for this topic: Grief.
To view current news articles on this topic check Google News.
Rudolph CD, et.al. Rudolph’s Pediatrics. 21st edit. McGraw-Hill, New York, NY. 2003:2176.
Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric Palliative Care. NEJM. 2004;350;1752-1762. Available from the Internet at: http://content.nejm.org/cgi/content/full/350/17/1752 cited 6/30/2005).
American Academy of Pediatrics Policy Statement. Palliative Care for Children. Pediatrics 2000:106;351-357. Available from the Internet at: http://pediatrics.aappublications.org/cgi/content/abstract/106/2/351?ijkey=998090f579fcd0b281de95222f76b49d19e9c4de&keytype2=tf_ipsecsha (cited 6/30/2005).
Donna M. D’Alessandro, MD
Associate Professor of Pediatrics, Children’s Hospital of Iowa
September 6, 2005