Paediatric palliative care at home: a single centre's experience
INTRODUCTION: 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. METHODS: We conducted a retrospective ca...
| Main Authors: | , |
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| Format: | Article |
| Language: | English |
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Singapore Medical Association
2016
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| Online Access: | http://psasir.upm.edu.my/id/eprint/16272/ http://psasir.upm.edu.my/id/eprint/16272/1/Paediatric%20palliative%20care%20at%20home%20a%20single%20centre%27s%20experience.pdf |
| _version_ | 1848842914696790016 |
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| author | Chong, Lee Ai Khalid, Farah |
| author_facet | Chong, Lee Ai Khalid, Farah |
| author_sort | Chong, Lee Ai |
| building | UPM Institutional Repository |
| collection | Online Access |
| description | INTRODUCTION: 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. METHODS: We conducted a retrospective case note review of patients aged up to 21 years who were referred to Hospis Malaysia from 2009 to 2013. RESULTS: 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. CONCLUSION: 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. |
| first_indexed | 2025-11-15T08:06:42Z |
| format | Article |
| id | upm-16272 |
| institution | Universiti Putra Malaysia |
| institution_category | Local University |
| language | English |
| last_indexed | 2025-11-15T08:06:42Z |
| publishDate | 2016 |
| publisher | Singapore Medical Association |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | upm-162722016-06-08T01:30:23Z http://psasir.upm.edu.my/id/eprint/16272/ Paediatric palliative care at home: a single centre's experience Chong, Lee Ai Khalid, Farah INTRODUCTION: 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. METHODS: We conducted a retrospective case note review of patients aged up to 21 years who were referred to Hospis Malaysia from 2009 to 2013. RESULTS: 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. CONCLUSION: 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. Singapore Medical Association 2016 Article PeerReviewed application/pdf en http://psasir.upm.edu.my/id/eprint/16272/1/Paediatric%20palliative%20care%20at%20home%20a%20single%20centre%27s%20experience.pdf Chong, Lee Ai and Khalid, Farah (2016) Paediatric palliative care at home: a single centre's experience. Singapore Medical Journal, 57 (2). pp. 77-80. ISSN 0037-5675 https://sma.org.sg/Publications/articles.aspx?ID=C2B7EBB8-611A-409B-A627-E079EE8B9665 |
| spellingShingle | Chong, Lee Ai Khalid, Farah Paediatric palliative care at home: a single centre's experience |
| title | Paediatric palliative care at home: a single centre's experience |
| title_full | Paediatric palliative care at home: a single centre's experience |
| title_fullStr | Paediatric palliative care at home: a single centre's experience |
| title_full_unstemmed | Paediatric palliative care at home: a single centre's experience |
| title_short | Paediatric palliative care at home: a single centre's experience |
| title_sort | paediatric palliative care at home: a single centre's experience |
| url | http://psasir.upm.edu.my/id/eprint/16272/ http://psasir.upm.edu.my/id/eprint/16272/ http://psasir.upm.edu.my/id/eprint/16272/1/Paediatric%20palliative%20care%20at%20home%20a%20single%20centre%27s%20experience.pdf |