The impact of a new public health approach to end-of-life care: A systematic review

Sallnow, Libby; Richardson, Heather; Murray, Scott A; Kellehear, Allan

doi:10.1177/0269216315599869

Cited by 141 publications

(166 citation statements)

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“…Furthermore, the confinement of our attentions to medical and nursing workforce demands within palliative care is a major retreat from the basic vision of palliative care as a promise of physical, psychological, social and spiritual care delivery at the end of life. Moreover, this narrowing of priorities is at the same time a failure of our capacity to use public health models, models that have proven to be effective in other health service areas14 as well as end-of-life care,15 to shore up the deficits in our traditional ways of offering social support at the end of life.…”

Section: Discussionmentioning

confidence: 99%

Palliative care reimagined: a needed shift

Abel

Kellehear

2016

BMJ Support Palliat Care

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Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.Palliative care, since the formation of St Christopher's Hospice in 1967 has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach.While most people will agree that these developments have been outstanding, yet some long-term problems remain while other recent national developments threaten early achievements. Among these current challenges are the following:1. The home death rate, over 30% in the 1980s in Britain, has remained low, with rates being near 20%. The National End-of-Life Care Strategy was published in the UK in 2008 with the specific purpose of resolving some of these problems. Despite the enormous effort that has taken place, the increase in home death rates is disappointingly modest, being 22.6% in 2014 1 2. Both primary and secondary care struggle to identify people who are at the last phase of their life and consequently there is limited uptake of advance care planning. Reporting da...

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Section: Discussionmentioning

confidence: 99%

Palliative care reimagined: a needed shift

Abel

Kellehear

2016

BMJ Support Palliat Care

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“…For deaths that can be anticipated, providing excellent care at the end-of-life that is responsive to need is critically important. Compassionate support in the last year of life cannot be the responsibility of health and social care professionals alone and requires a public health response involving the wider community [2, 3], recognising the importance of social networks and social capital [4]. Proponents of these approaches argue that a primary focus on biomedical and physical aspects of end-of-life care ignores the social context within which dying takes place.…”

Section: Introductionmentioning

confidence: 99%

How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA)

Walshe

Dodd

Hill³

et al. 2016

BMC Med

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BackgroundClinical care alone at the end of life is unlikely to meet all needs. Volunteers are a key resource, acceptable to patients, but there is no evidence on care outcomes. This study aimed to determine whether support from a social action volunteer service is better than usual care at improving quality of life for adults in the last year of life.MethodsA pragmatic, multi-centre wait-list controlled trial, with participants randomly allocated to receive the volunteer support intervention either immediately or after a 4 week wait. Trained volunteers provided tailored face-to-face support including befriending, practical support and signposting to services, primarily provided within the home, typically for 2–3 hours per week. The primary outcome was rate of change of quality of life at 4 weeks (WHO QOL BREF, a general, culturally sensitive measure). Secondary outcomes included rate of change of quality of life at 8 weeks and Loneliness (De Jong Gierveld Loneliness Scale), social support (mMOS-SS), and reported use of health and social care services at 4 and 8 weeks.ResultsIn total, 196 adults (61% (n = 109) female; mean age 72 years) were included in the study. No significant difference was found in main or secondary outcomes at 4 weeks. Rate of change of quality of life showed trends in favour of the intervention (physical quality of life domain: b = 3.98, CI, –0.38 to 8.34; psychological domain: b = 2.59, CI, –2.24 to 7.43; environmental domain: b = 3, CI, –4.13 to 4.91). Adjusted analyses to control for hours of volunteer input found significantly less decrease in physical quality of life in the intervention group (slope (b) 4.43, CI, 0.10 to 8.76). While the intervention also favoured the rate of change of emotional (b = –0.08; CI, –0.52 to 0.35) and social loneliness (b = –0.20; CI, –0.58 to 0.18), social support (b = 0.13; CI, –0.13 to 0.39), and reported use of health and social care professionals (b = 0.16; CI, –0.22 to 0.55), these were not statistically significant. No adverse events were reported.ConclusionsClinicians can confidently refer to volunteer services at the end of life. Future research should focus on ‘dose’ to maximise likely impact.Trial registrationThe trial was prospectively registered. ISRCTN Registry: ISRCTN12929812, registered 20 May 2015.

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“…30,64 There is as yet little research based evidence of impact on quality of care from community projects, although research projects are underway to look at impact, and a systematic review looking at eight projects identifies positive outcomes for family carers' well-being and support. 65 There are also reports of projects in resource poor countries involving community volunteers in identifying people who need care, planning, and providing some aspects of palliative care. For example, in Kerala, India there is a neighborhood network of many years standing that has reached over 60% of people in need, despite lack of statutory resources.…”

Section: Palliative Care Campaigns S-31mentioning

confidence: 99%

The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care

Seymour

2018

Journal of Palliative Medicine

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Objective: The right to health includes a right of access to good quality palliative care, but inequalities persist. Raising awareness is a key plank of the public health approach to palliative care, but involves consideration of subjects most of us prefer not to address. This review addresses the question: ''do public health awareness campaigns effectively improve the awareness and quality of palliative care''? Background: The evidence shows that public awareness campaigns can improve awareness of palliative care and probably improve quality of care, but there is a lack of evidence about the latter. Methods: Rapid review and synthesis. Results: A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives. Arts and humanities have a role to play in allowing individuals and communities to express experiences of illness, death, and grief and encourage conversation and thoughtful reflection. There is evidence about key factors for success: targeting, networking, and use of specific, measurable, achievable, realistic time-bound objectives; continuous evaluation; and complementarity to national and international policy. Discussion: Campaigns should be located within the framework of public health promotion and the synergy between short national mass media campaigns and longer term local community action initiatives carefully considered. National and local projects to raise awareness should identify and address any barriers at the level of individuals, communities, and systems of care, for example, literacy skills and unequal access to resources.

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The impact of a new public health approach to end-of-life care: A systematic review

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Cited by 141 publications

References 50 publications

Palliative care reimagined: a needed shift

Palliative care reimagined: a needed shift

How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA)

The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care

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