A group of US researchers investigated the hospital care that children and young adults from across Washington State received in their last year of life. Their results show that while infants would benefit most from in-hospital palliative care and bereavement services, older children with long-term illnesses also need community-based and at-home services.
The authors write: "Our current population-based knowledge of pediatric end-of-life experience is severely limited…This population-based study of end-of-life care for children provides a valuable perspective due to the breadth of its surveillance, extending beyond the confines of a single institution or a restricted range of disease conditions."
The researchers, from the Children's Hospital of Philadelphia, the Child Health Institute, and the Children's Hospital and Regional Medical Center in Seattle, studied the frequency and duration of hospital visits by people under 25 who died in Washington State between 1990 and 1996. They focused primarily on people who suffered from long-term illnesses, as these patients in particular could benefit from improvements in palliative and end of life care.
8,893 people under 25 died within the study period. A quarter of these suffered from long-term illnesses; a quarter were less than a year old.
The researchers were interested in finding out how best to identify patients who would benefit from palliative care services. One way, which would effectively identify dying newborns, was to look at when the patients were first hospitalized. 89% of newborns that died under a week of age, and 75% of newborns that died between one and four weeks old were hospitalized on their first day of life. Unfortunately, this method cannot reliably identify older children who might want palliative care services.
Another way to identify dying children was for physicians to monitor how frequently patients between one and 25 years old were admitted to hospital. Though the rate of hospitalization does increase towards the end of life, it does not do so, on average, until two months before death. This means that such a scheme could not identify patients early enough for them to benefit fully from palliative and end-of life care services.
The researchers suggest that the quickening pace of hospitalization during the last month of life means that "simultaneous delivery of different modes of care, from cure-seeking or life-extending to comfort-seeking or family-supportive is how pediatric end-of-life care should ideally be delivered."
To establish which services would most benefit dying children, the researchers assessed how much time these patients had spent in hospital in the year leading up to their death. Of the newborn children who died either in their first week, or between their second and fourth week of life, 92% and 85% respectively spent their entire lives in the hospital. However, fewer than 10% of children over a year old with a long-term illness were in hospital on any given day, until they had less than three months to live.
These figures suggest that infants who are dying would benefit most from hospital-based palliative care services. Effective end-of-life care for older children would also need to offer outpatient, community-based, or at-home services.
This press release is based on the following article:
Hospital care for children and young adults in the last year of life: a population-based study
Chris Feudtner, David L DiGiuseppe, John M Neff
BMC Medicine 2003, 1:3
Published Tuesday 23 December 2003
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For further information about this research, please contact the author Chris Feudtner by email at: feudtner@email.chop.edu or contact Joey Marie McCool of The Children's Hospital of Philadelphia by phone on 215-590-7092.
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