Rural residents' perspectives on the rural ‘good death’: a scoping review

Abstract

The 'good death' is one objective of palliative care, with many 'good death' viewpoints and research findings reflecting the urban voice. Rural areas are distinct and need special consideration. This scoping review identified and charted current research knowledge on the 'good' rural death through the perspectives of rural residents, including rural patients with a life-limiting illness, to identify evidence and gaps in the literature for future studies. A comprehensive literature search of English language articles (no date filter applied) was conducted in 2016 (2 January to 14 February) using five library databases. Reference lists of included articles, recent issues of eight relevant journals and three grey literature databases were also hand-searched. Twenty articles (for 17 studies and one systematic review) were identified after a two-phase screening process by two reviewers, using pre-determined inclusion criteria. Data from each study were extracted and charted, analysed using a thematic analysis of the included articles' content, and with a quantitative analysis of the scoping review. These papers revealed data collected from rural patients with a life-limiting illness and family caregivers, rural healthcare providers, the wider rural community, rural community leaders and rural health administrators and policy makers. Rural locations were heterogeneous. Residents from developed and developing countries believe a 'good death' is one that is peaceful, free of pain and without suffering; however, this is subjective and priorities are based on personal, cultural, social and religious perspectives. Currently, there is insufficient data to generalise rural residents' perspectives and what it means for them to die well. Given the extreme importance of a 'good death', there is a need for further studies to elicit rural patient and family caregiver perspectives.

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

“…There were both good and bad experiences, good moments and terrible narratives of the poor communication that left a negative imprint on the family member’s EOL experience and grieving process. In terms of what components made up the good death experience, the results closely align with previous scholarship in the good death literature, including pain and symptom management, clear decision-making, preparation for death and communication [6,7,12,14,17,57,58]. Furthermore, the results align with an earlier meta-synthesis of EOL care from the family perspective that reported the necessity of quality communication among healthcare participants and clinicians being open about imminent death [30].…”

“…The results illustrate consensus on certain ideas such as the importance of pain management, but there were also differences that indicate a highly individualized definition of a good death that included socio-cultural factors that defined quality of life [13,17]. Both reviews concluded with a call for more research [13,17]. More, specifically there was a call for healthcare participants at end of life to engage in more open, public dialogue surrounding death and dying [13].…”

“…Although there is not full consensus in the literature about what factors or qualities contribute to a good death, there are clear overlapping aspects to a good death, including “pain and symptom management, clear decision making, preparation for death, completion, contributing to others and affirmation of the whole person” [12] (p. 825). Many studies continue to find similar results that overlap with these categories [11,16,17]. Good death studies have also been conducted across disparate geographic locations, including rural developed and developing countries and different cultures such as Taiwanese widows, bereaved family members in Singapore, European countries, Japan, Kenya and Israeli community members [16,17,18,19,20,21,22].…”

“…Recently, two reviews of good death studies were published that focused on healthcare providers, patients and family members as they identified aspects of what a good death looks like [13,17]. The results illustrate consensus on certain ideas such as the importance of pain management, but there were also differences that indicate a highly individualized definition of a good death that included socio-cultural factors that defined quality of life [13,17].…”

Geographic distribution of hospice, homecare, and nursing home facilities and access to end-of-life care among persons living with HIV/AIDS in Appalachia

“…In the Southern region, Tennessee is surpassed only by Kentucky, West Virginia, and Arkansas on both measures for lack of hospice facilities [13]. Despite the fact that the majority of individuals have expressed a desire to die at home and rural individuals expressed a desire for a peaceful death without suffering, hospice enrollment remains low: approximately 6% for adult PLWHA and <1% for pediatric and adolescent patients with AIDS [23][24][25][26]. End-of-life services, like hospice, are likely inaccessible within Appalachian regions due to known barriers of rural geographic landscape, remote access of the region and marginalization [9,10].…”