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The symptoms of dying children
Ross Drake1, Judy Frost, John J Collins
1Pediatric Palliative Care Service, Starship Children's Hospital, Auckland, New Zealand.
Insights
Children dying in hospital experience a high symptom burden, with an average of 11 symptoms in their last week of life. Palliative care and aggressive symptom management are recommended for improved comfort in pediatric end-of-life care.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Hospital Medicine
Background:
- Children dying in hospitals often face significant symptom burden.
- Effective symptom management is crucial for end-of-life care in pediatric patients.
Purpose of the Study:
- To investigate symptom prevalence, characteristics, and distress in children nearing the end of life in a hospital setting.
- To identify factors influencing symptom experience, such as location of death and disease process.
Main Methods:
- Retrospective review of medical records for symptoms in the last week of life.
- Nurse interviews to assess symptoms and distress on the last day of life.
- Evaluation of 30 children with a mean age of 8.9 years, predominantly with cancer.
Main Results:
- Children experienced a mean of 11.1 symptoms in their last week of life, with six occurring in over 50% of cases.
- Location of death impacted symptom count, with wards having more symptoms (14.3) than intensive care units (9.5).
- Most symptoms were not highly distressing, and children were generally comfortable, despite a high symptom burden.
Conclusions:
- The symptom burden for dying children in hospitals is substantial.
- Palliative care principles and proactive symptom management should be implemented across all hospital areas.
- Ensuring comfort and addressing symptom distress are paramount in pediatric end-of-life care.
Abstract:
The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the last day of life were determined by nurse interview. Thirty children with an average age of 8.9 years were evaluated. The dominant disease process was cancer (n=18), most likely location of death intensive care (n=20), and major physiological disturbances at the time of death respiratory failure (n=9) and encephalopathy (n=9). The majority of children (90%) did not have a pre-existing Do Not Resuscitate (DNR) order and 58% of these children had this addressed for the first time in the last day of life. The mean (+/-SD) number of symptoms per patient in the last week of life was 11.1+/-5.6 and six symptoms occurred with a prevalence of 50% or more. The location of death had a significant (P<0.02) impact on the mean number of symptoms: ward (14.3+/-6.1) vs. intensive care (9.5+/-4.7). In general, symptoms in the last day of life were not associated with a high level of distress. In summary, the symptom burden of dying children is high. Symptoms were, at times, distressing but children were generally comfortable. The findings suggest the application of the palliative care paradigm and a more aggressive approach to symptom control to all areas of the hospital may prove beneficial to dying children.