Paediatric palliative care at home: a single centre's experience.

Abstract

There is increased awareness of paediatric palliative care in Malaysia, but no local published data on home care services. We aimed to describe the paediatric experience at Hospis Malaysia, a community-based palliative care provider in Malaysia. We conducted a retrospective case note review of patients aged up to 21 years who were referred to Hospis Malaysia from 2009 to 2013. A total of 137 patients (92 male, 45 female) with a median age of 140 (3-250) months were included in this study. The majority (71.5%) had malignancies. At referral, 62 patients were still in hospital and 17 died prior to discharge. A total of 108 patients received home visits. At the first home visit, 89.8% of patients had at least one physical symptom. Pain was the most common (52.5%) symptom. Patients had various supportive devices: 39 were on feeding tubes, ten had tracheostomies, five were on bilevel positive airway pressure and ten had urinary catheters. 66 families discussed the preferred location of care at end-of-life. Among those who died, 78.9% died at home, as they preferred (p < 0.001). Regression analysis showed no statistically significant association between a home death and age, diagnosis and number of home visits. Bereavement follow-up occurred for 93.3% of families. Community care referrals tend to occur late, with 25.5% of patients dying within two weeks of referral. At referral, patients often had untreated physical symptoms. The majority of families preferred and had a home death.