Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care.
bereavement
caregiving
compassionate communities
consumer perspectives
end of life care
equity
palliative care
public health approach
Journal
Healthcare (Basel, Switzerland)
ISSN: 2227-9032
Titre abrégé: Healthcare (Basel)
Pays: Switzerland
ID NLM: 101666525
Informations de publication
Date de publication:
23 Nov 2021
23 Nov 2021
Historique:
received:
01
10
2021
revised:
09
11
2021
accepted:
18
11
2021
entrez:
24
12
2021
pubmed:
25
12
2021
medline:
25
12
2021
Statut:
epublish
Résumé
Consumer experience of palliative care has been inconsistently and selectively investigated. People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.
Sections du résumé
BACKGROUND
BACKGROUND
Consumer experience of palliative care has been inconsistently and selectively investigated.
METHODS
METHODS
People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received.
RESULTS
RESULTS
353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement.
CONCLUSIONS
CONCLUSIONS
A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.
Identifiants
pubmed: 34946341
pii: healthcare9121615
doi: 10.3390/healthcare9121615
pmc: PMC8702146
pii:
doi:
Types de publication
Journal Article
Langues
eng
Subventions
Organisme : Health Department of Western Australia
ID : no number
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