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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...

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Main Authors: Chong, Lee Ai, Khalid, Farah
Format: Article
Language:English
Published: Singapore Medical Association 2016
Online Access:http://psasir.upm.edu.my/id/eprint/16272/1/Paediatric%20palliative%20care%20at%20home%20a%20single%20centre%27s%20experience.pdf
http://psasir.upm.edu.my/id/eprint/16272/
https://sma.org.sg/Publications/articles.aspx?ID=C2B7EBB8-611A-409B-A627-E079EE8B9665
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spelling my.upm.eprints.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
institution Universiti Putra Malaysia
building UPM Library
collection Institutional Repository
continent Asia
country Malaysia
content_provider Universiti Putra Malaysia
content_source UPM Institutional Repository
url_provider http://psasir.upm.edu.my/
language English
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.
format Article
author Chong, Lee Ai
Khalid, Farah
spellingShingle Chong, Lee Ai
Khalid, Farah
Paediatric palliative care at home: a single centre's experience
author_facet Chong, Lee Ai
Khalid, Farah
author_sort Chong, Lee Ai
title Paediatric palliative care at home: a single centre's experience
title_short 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_sort paediatric palliative care at home: a single centre's experience
publisher Singapore Medical Association
publishDate 2016
url http://psasir.upm.edu.my/id/eprint/16272/1/Paediatric%20palliative%20care%20at%20home%20a%20single%20centre%27s%20experience.pdf
http://psasir.upm.edu.my/id/eprint/16272/
https://sma.org.sg/Publications/articles.aspx?ID=C2B7EBB8-611A-409B-A627-E079EE8B9665
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score 13.211869

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