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The Pediatric Forum |

Palliative Program Considerations

Ruprecht Nitschke, MD
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Copyright 2003 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.

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Arch Pediatr Adolesc Med. 2003;157(2):207-208. doi:10.1001/archpedi.157.2.207
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In the study by Contro et al in the January issue of the ARCHIVES, the authors gathered information from family members of deceased patients treated in their institution with the purpose of using it as a resource for developing palliative programs.1 As stated by the authors, most of the important observations had already been described in the literature by different investigators. However, the authors failed to address one challenge for the medical staff and the parents that has profound importance, namely, the developmental needs of the child.

While the young child lives for the moment, relies on the caregivers with complete trust, and has no perception of the meaning of death, children older than 5 years begin to perceive the adult world differently. Most of them realize that death is irreversible and may happen to them. If the subject of death is not addressed, anxiety and fears of the unknown may seriously affect the child's quality of life. Although the authors emphasize that the parents ask the medical staff for open, honest communication about the child's situation, they do not give any information on whether the 22 children (>5 years old) in their sample were informed about their health issues and whether they had the option to participate in treatment decisions. During the discussion with the parents, information could be gathered, such as: Was the child informed about his/her death? Who gave the information? When was the information given? Was he/she depressed? Did he/she communicate with his/her family and friends? We demonstrated in a retrospective analysis that children protected from the knowledge of their impending death may be deprived of living to their full potential, and that most of the 75 children who participated in a program of open communication died with greater calm and composure. They spent their last days together with their families, creating final memories, giving final gifts, finding spiritual peace, and saying goodbye.2

The author of the editorial writes that the goal for palliative care is to achieve the best quality of life for patients and their families.3 However, she does not address the question of communication with an older child about his or her imminent death, nor does she address ways to measure a child's quality of life. A close look at the development and behavior of the child should be incorporated in any future evaluation of pediatric palliative care issues.

REFERENCES

Contro  N, Larson  J, Scofield  S.  et al.  Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;15614- 19
Nitschke  R, Meyer  WH, Sexauer  CL.  et al.  Perspective: care of terminally ill children with cancer. Med Pediatr Oncol. 2000;34268- 270
Hutton  N. Pediatric palliative care: the time has come. Arch Pediatr Adolesc Med. 2002;1569- 10

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Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature

Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal

Contro  N, Larson  J, Scofield  S.  et al.  Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;15614- 19
Nitschke  R, Meyer  WH, Sexauer  CL.  et al.  Perspective: care of terminally ill children with cancer. Med Pediatr Oncol. 2000;34268- 270
Hutton  N. Pediatric palliative care: the time has come. Arch Pediatr Adolesc Med. 2002;1569- 10

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