Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

被引:11
作者
Aoun, Samar M. [1 ,2 ]
Richmond, Robyn [1 ]
Jiang, Leanne [1 ,2 ]
Rumbold, Bruce [2 ]
机构
[1] Perron Inst Neurol & Translat Sci, Nedlands, WA 6009, Australia
[2] La Trobe Univ, Sch Psychol & Publ Hlth, Publ Hlth Palliat Care Unit, Melbourne, Vic 3086, Australia
关键词
palliative care; end of life care; consumer perspectives; equity; public health approach; compassionate communities; caregiving; bereavement; BEREAVEMENT; CANCER; IMPACT;
D O I
10.3390/healthcare9121615
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Consumer experience of palliative care has been inconsistently and selectively investigated. 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: 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: 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.
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页数:13
相关论文
共 34 条
[1]   Compassionate communities and end-of-life care [J].
Abel, Julian .
CLINICAL MEDICINE, 2018, 18 (01) :6-8
[2]   Circles of care: should community development redefine the practice of palliative care? [J].
Abel, Julian ;
Walter, Tony ;
Carey, Lindsay B. ;
Rosenberg, John ;
Noonan, Kerrie ;
Horsfall, Debbie ;
Leonard, Rosemary ;
Rumbold, Bruce ;
Morris, Deborah .
BMJ SUPPORTIVE & PALLIATIVE CARE, 2013, 3 (04) :383-388
[3]  
[Anonymous], 2011, VOICES REDESIGN TEST
[4]  
Aoun S.M., 2020, Palliat Care Soc Prac, V14, p263235242093513, DOI 10.1177/2632352420935132
[5]  
Aoun S.M., 2021, PALLIATIVE CARE SOCI, V15, p26323524211009537, DOI [10.1177/26323524211009537, DOI 10.1177/26323524211009537]
[6]   Family Caregiver Participation in Palliative Care Research: Challenging the Myth [J].
Aoun, Samar ;
Slatyer, Susan ;
Deas, Kathleen ;
Nekolaichuk, Cheryl .
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2017, 53 (05) :851-861
[7]   Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice [J].
Aoun, Samar ;
Toye, Chris ;
Deas, Kathleen ;
Howting, Denise ;
Ewing, Gail ;
Grande, Gunn ;
Stajduhar, Kelli .
PALLIATIVE MEDICINE, 2015, 29 (10) :929-938
[8]   Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care [J].
Aoun, Samar ;
Bird, Sonia ;
Kristjanson, Linda J. ;
Currow, David .
PALLIATIVE MEDICINE, 2010, 24 (07) :674-681
[9]  
Aoun Samar M, 2020, Palliat Care Soc Pract, V14, p2632352420958000, DOI [10.1177/2632352420935130, 10.1177/2632352420935132, 10.1177/2632352420958000]
[10]   The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death [J].
Aoun, Samar M. ;
Ewing, Gail ;
Grande, Gunn ;
Toye, Chris ;
Bear, Natasha .
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2018, 55 (02) :368-378