Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care
Abstract
:1. Introduction
2. Objectives
3. Methodology
- Priority 1. Care is accessible to everyone, everywhere
- Priority 2. Care is person-centred
- Priority 3. Care is coordinated
- Priority 4. Families and carers are supported
- Priority 5. All staff are prepared to care
- Priority 6. The community is aware and able to care
4. Results
4.1. Profile of Survey Respondents
4.2. Non-Users’ Reasons for Not Receiving Palliative Care
4.3. Differences in Quality Indicators within the Six Priorities
4.4. Differences in Care between Users and Non-Users of Palliative Care Services
4.5. Differences in Care between Cancer and Non-Cancer Conditions
4.6. What Could Have Worked Better for Consumers?
5. Discussion
Strengths and Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Number of Respondents | Used Palliative Care (Users) | Did Not Use Palliative Care (Non-Users) | Total |
---|---|---|---|
Bereaved Carer | 204 | 45 | 249 (71%) |
Current Carer | 27 | 45 | 72 (20%) |
Patient | 8 | 24 | 32 (9%) |
TOTAL | 239 (68%) | 114 (32%) | 353 (100%) |
Users | Non-Users | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Bereaved | Current | Patient | Bereaved | Current | Patient | |||||||
Carer | Carer | Carer | Carer | |||||||||
(n = 204) | (n = 28) | (n = 8) | (n = 45) | (n = 45) | (n = 24) | |||||||
n | % | n | % | n | % | n | % | n | % | n | % | |
Gender | ||||||||||||
Male | 21 | 10.3 | 6 | 21.4 | 2 | 25 | 4 | 8.9 | 6 | 13.3 | 9 | 37.5 |
Female | 181 | 88.7 | 22 | 78.6 | 6 | 75 | 41 | 91.1 | 39 | 86.7 | 15 | 62.5 |
Missing | 2 | 1 | 0 | 0 | 0 | 0 | 0 | - | 0 | - | 0 | - |
Age, year | ||||||||||||
Mean (SD) | 54.6 (13.2) | 46.5 (12.3) | 66.7(9.3) | 57.4 (12.2) | 56.8 (11.3) | 65.7(7.5) | ||||||
Median (Range) | 55.0 (26–89) | 46 (20–69) | 69 (47–75) | 57 (30–83) | 58 (33–73) | 66 (53–81) | ||||||
Marital Status | ||||||||||||
Married/de facto | 91 | 44.6 | 19 | 67.9 | 5 | 62.5 | 26 | 57.8 | 36 | 80 | 13 | 54.2 |
Widowed | 70 | 34.3 | 1 | 3.6 | 0 | 10 | 22.2 | 2 | 4.4 | 3 | 12.5 | |
Other | 38 | 18.6 | 8 | 28.6 | 3 | 37.5 | 8 | 17.8 | 6 | 13.3 | 8 | 33.3 |
Missing | 5 | 2.5 | 0 | - | 0 | - | 1 | 2.2 | 1 | 2.2 | 0 | - |
Education Level | ||||||||||||
University | 102 | 50.5 | 14 | 50 | 2 | 25 | 24 | 53.3 | 26 | 57.8 | 14 | 58.3 |
Below University | 98 | 49 | 13 | 46.4 | 6 | 75 | 21 | 46.7 | 17 | 37.8 | 10 | 41.7 |
Missing | 3 | 14.8 | 1 | 3.6 | 0 | - | 0 | - | 2 | 4.4 | 0 | - |
Employment Status | ||||||||||||
Working | 128 | 62.7 | 20 | 71.4 | 0 | - | 29 | 64.4 | 21 | 46.7 | 4 | 16.7 |
Not Working | 24 | 11.8 | 6 | 21.4 | 2 | 25 | 5 | 11.1 | 11 | 24.4 | 3 | 12.5 |
Retired | 49 | 24 | 1 | 3.6 | 6 | 75 | 11 | 24.4 | 11 | 24.4 | 17 | 70.8 |
Missing | 3 | 1.5 | 1 | 3.3 | 0 | - | 0 | - | 2 | 4.4 | 0 | - |
Residential Postcode | ||||||||||||
Metropolitan | 140 | 68.6 | 18 | 64.3 | 4 | 50 | 34 | 75.6 | 35 | 77.8 | 17 | 70.8 |
Regional/Rural | 56 | 27.5 | 9 | 32.1 | 3 | 37.5 | 8 | 17.8 | 10 | 22.2 | 6 | 25 |
Interstate | 1 | 0.5 | 0 | 0 | 0 | 0 | 1 | 2.2 | 0 | 0 | 0 | 0 |
Missing | 7 | 3.4 | 1 | 3.6 | 1 | 12.5 | 2 | 4.4 | 0 | 0 | 1 | 4.2 |
Relationship to Patient | ||||||||||||
Spouse/Partner | 70 | 34.3 | 5 | 17.9 | - | 11 | 24.4 | 24 | 53.3 | - | ||
Daughter/Son | 79 | 38.7 | 11 | 39.3 | - | 21 | 46.7 | 16 | 35.6 | - | ||
Other | 48 | 22.5 | 11 | 39.3 | - | 13 | 28.9 | 5 | 11.1 | - | ||
Missing | 7 | 3.4 | 1 | 3.6 | - | 0 | - | 0 | - | - | ||
Disease | ||||||||||||
Cancer | 118 | 57.8 | 14 | 50.0 | 5 | 62.5 | 17 | 37.8 | 14 | 31.1 | 20 | 83.3 |
Non–Cancer | 55 | 27 | 12 | 42.9 | 3 | 37.5 | 25 | 55.6 | 30 | 66.6 | 4 | 16.7 |
Motor Neurone Dis. | 19 | - | 3 | - | 1 | - | 5 | - | 2 | - | - | |
Dementia | 14 | - | 4 | - | 0 | - | 7 | - | 18 | - | 0 | - |
Other neurological | 3 | - | 1 | - | 1 | - | 8 | - | 8 | - | 2 | - |
Lung/Heart/Kidney | 24 | - | 6 | - | 1 | - | 7 | - | 7 | - | 2 | - |
Missing/Unknown | 31 | 15.2 | 2 | 7.1 | 0 | 0 | 3 | 6.7 | 1 | 2.3 | 0 | 0 |
What Is Working Well | What Is Not Working So Well |
---|---|
Priority one: Care is accessible to everyone, everywhere | |
78% rated quality of care excellent to good | 60% reported receiving as much support as wanted before death. |
84% could access care as soon as they needed. | 50% felt they received enough help after their relative’s death |
76% rated relief of pain excellent to good | All indicators lower for non-cancer conditions |
70% for relief of symptoms other than pain and practical assistance. | All indicators lower for non-users of palliative care |
80% rated quality of EOL care excellent/good and reported they received enough help at time of death (definitely/ to some extent). | |
Priority Two: Care is person-centred | |
83% rated values respected always/most of the time | 58% felt they could discuss worries/fears as much as they wanted |
87% rated cultural background respected always/most of the time | 61% rated spiritual support as excellent/good |
82% rated spiritual beliefs respected always/most of the time | 64% rated emotional support as excellent/good |
69% reported that the services checked if they have EOL wishes documents | All indicators lower for non-cancer conditions |
78% felt their wishes were taken into account | All indicators lower for non-users of palliative care |
72% of patients felt included in care decisions (excellent/good) | |
80% of carers reported being involved in decision making at EOL as much as they wanted | |
Priority Three: Care is coordinated | |
75% found the referral process easy/very easy | 60% reported that services worked well with GP and external services |
87% thought staff worked well within each setting (definitely/to some extent) | 10% of ED admissions were planned or coordinated |
74% rated out of hours services as excellent/good | All indicators lower for non-cancer conditions |
Priority Four: Families and carers are supported | |
78% reported patients were involved in decisions about their EOL care as much as they wanted | 62% rated emotional support to family carer as excellent/good |
60% were provided information on their relative’s condition | |
47% of carers reported being able to talk about experience of illness and death to services | |
53% of carers were offered information on grief by palliative care services | |
42% of carers were contacted by palliative care services 3–6 weeks after death and only 16% six months after death of their relative | |
All indicators lower for non-cancer conditions | |
All indicators lower for non-users of palliative care | |
Priority Five: All staff are prepared to care | |
88% thought they were treated with respect/dignity always/most of the time | All indicators lower for non-cancer conditions |
89% thought they were treated with compassion/ kindness always/most of the time | |
90% rated staff as very competent/competent | |
78% said they could obtain information when needed always/most of the time | |
86% of carers reported being dealt with in a sensitive manner at death/end of life | |
Priority Six: The community is aware and able to care | |
96% reported they received informal support before death and 92% found this informal support very/quite helpful | Lower rates of helpfulness before and after death for non-users |
94% reported they received informal support after death and 87% found this informal support very/quite helpful |
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Aoun, S.M.; Richmond, R.; Jiang, L.; Rumbold, B. Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care. Healthcare 2021, 9, 1615. https://doi.org/10.3390/healthcare9121615
Aoun SM, Richmond R, Jiang L, Rumbold B. Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care. Healthcare. 2021; 9(12):1615. https://doi.org/10.3390/healthcare9121615
Chicago/Turabian StyleAoun, Samar M., Robyn Richmond, Leanne Jiang, and Bruce Rumbold. 2021. "Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care" Healthcare 9, no. 12: 1615. https://doi.org/10.3390/healthcare9121615