Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Rainsford, Suzanne; MacLeod, Rod; Glasgow, Nicholas; Phillips, Christine; Wiles, R; Wilson, Donna M.

doi:10.1177/0269216316685234

Cited by 56 publications

(85 citation statements)

References 60 publications

(437 reference statements)

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“…A number of these findings on the perceived role of GPs in providing EOL care and barriers they experience are comparable to those of previous studies [18,24,[36][37][38][39], including studies that have focused on urban GPs [40]. However, the current study indicated that many of these barriers appear to be more pronounced in rural versus urban contexts within Australia.…”

Section: Discussionsupporting

confidence: 85%

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End-of-life care in rural general practice: how best to support commitment and meet challenges?

et al. 2019

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Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia. Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia. Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care. Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.

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Section: Discussionsupporting

confidence: 85%

“…Few studies have specifically described rural/regional GPs' involvement and challenges in providing palliative and EOL care [24][25][26]. The current knowledge gaps have limited policy responses that might better support GPs in the delivery of this care in rural/regional settings.…”

Section: Introductionmentioning

confidence: 99%

End-of-life care in rural general practice: how best to support commitment and meet challenges?

et al. 2019

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“…This reconceptualization moves beyond the medical model of death and focuses on helping patients die at home and better quality of care in hospitals [24]. Recently, results of a systematic literature review illustrated that voices of rural participants at EOL have been marginalized and require attention because their needs are unique and present both challenges and benefits regarding the EOL experience in a rural setting [25]. Based on the results of this particular study, it is necessary for healthcare providers to understand the informational and medicinal needs of patients and family members in rural settings through communication and adequate dissemination of information [25].…”

Section: Introductionmentioning

confidence: 99%

“…Recently, results of a systematic literature review illustrated that voices of rural participants at EOL have been marginalized and require attention because their needs are unique and present both challenges and benefits regarding the EOL experience in a rural setting [25]. Based on the results of this particular study, it is necessary for healthcare providers to understand the informational and medicinal needs of patients and family members in rural settings through communication and adequate dissemination of information [25]. While there are diverse contexts for EOL, it has been has considered a taboo topic, difficult for healthcare participants to bring up and engage in conversation [26]; if family members and patients know that the EOL is approaching, they have the opportunity to have meaningful conversations that promote a good death [27].…”

Section: Introductionmentioning

confidence: 99%

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Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

Tenzek

Depner

2017

Behavioral Sciences

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The concept of a good death continues to receive attention in end-of-life (EOL) scholarship. We sought to continue this line of inquiry related to a good death by conducting a meta-synthesis of published qualitative research studies that examined a good death from the bereaved family member’s perspective. Results of the meta-synthesis included 14 articles with 368 participants. Based on analysis, we present a conceptual model called The Opportunity Model for Presence during the EOL Process. The model is framed in socio-cultural factors, and major themes include EOL process engagement with categories of healthcare participants, communication and practical issues. The second theme, (dis)continuity of care, includes categories of place of care, knowledge of family member dying and moment of death. Both of these themes lead to perceptions of either a good or bad death, which influences the bereavement process. We argue the main contribution of the model is the ability to identify moments throughout the interaction where family members can be present to the EOL process. Recommendations for healthcare participants, including patients, family members and clinical care providers are offered to improve the quality of experience throughout the EOL process and limitations of the study are discussed.

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Geographic Disparities in Head and Neck Cancer Mortality and Place of Death

Balanchivadze,

Blackford,

Sedhom

et al. 2024

JAMA Otolaryngol Head Neck Surg

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Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Cited by 56 publications

References 60 publications

End-of-life care in rural general practice: how best to support commitment and meet challenges?

End-of-life care in rural general practice: how best to support commitment and meet challenges?

Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

Geographic Disparities in Head and Neck Cancer Mortality and Place of Death

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