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Paediatric palliative care at home: a single centre's experience
1Department of Paediatrics, Hospis Malaysia, Kuala Lumpur, Malaysia.
Singapore Medical Journal
|February 20, 2016
Summary
This study describes paediatric palliative home care in Malaysia, finding most children had symptoms at referral but preferred and achieved home deaths. Late referrals impacted timely symptom management for these children.
Area of Science:
- Palliative Care
- Paediatric Medicine
- Community Health Services
Background:
- Growing awareness of paediatric palliative care in Malaysia necessitates local data.
- Hospis Malaysia provides community-based palliative care, but paediatric home care data is lacking.
Purpose of the Study:
- To describe the paediatric palliative care experience at Hospis Malaysia.
- To analyze patient demographics, symptoms, and care outcomes.
Main Methods:
- Retrospective case note review of paediatric patients (up to 21 years) referred to Hospis Malaysia (2009-2013).
Main Results:
- 137 patients (71.5% with malignancies) were included; 108 received home visits.
- Most patients presented with physical symptoms (e.g., pain) at referral.
- 78.9% of deceased patients died at home, aligning with family preferences.
Conclusions:
- Paediatric palliative care referrals in the community often occur late.
- Patients frequently have untreated symptoms upon referral.
- Home death is a strong preference for families and is achievable.
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