The 'safe death': An ethnographic study exploring the perspectives of rural palliative care patients and family caregivers.

BACKGROUND: In rural settings, relationships between place and self are often stronger than for urban residents, so one may expect that rural people would view dying at home as a major feature of the 'good death'. AIM: To explore the concept of the 'good death' articulated by rural patients with life-limiting illnesses, and their family caregivers. DESIGN: Ethnography, utilising open-ended interviews, observations and field-notes. PARTICIPANTS: In total, 12 rural (town and farm) patients with life-limiting illnesses, 18 family caregivers and 6 clinicians, in the Snowy Monaro region of New South Wales, Australia, participated in this study over the course of the deaths of the patients. Interviews were transcribed and analysed with observational data using an emergent thematic process. RESULTS: A 'safe death' was central to a 'good death' and was described as a death in which one could maintain (1) a connection with one's previous identity; (2) autonomy and control over decisions regarding management of end-of-life care and (3) not being overwhelmed by the physical management of the dying process. For all participants, the preferred place of death was the 'safe place', regardless of its physical location. CONCLUSION: Safety, in this study, is related to a familiar place for death. A home death is not essential for and does not ensure a 'good death'. We all have a responsibility to ensure all places for dying can deliver the 'safe death'. Future research could explore the inter-relationships between safety and preference for home or home-like places of death.

Dying at home in rural residential aged care: A mixed-methods study in the Snowy Monaro region, Australia.

Residential aged care (RAC) is a significant provider of end-of-life care for people aged 65 years and older. Rural residents perceive themselves as different to their urban counterparts. Most studies describing place of death (PoD) in RAC are quantitative and reflect an urban voice. Using a mixed-methods design, this paper examines the PoD of 80 RAC residents (15 short-stay residents who died in RAC during respite or during an attempted step-down transition from hospital to home, and 65 permanent residents), within the rural Snowy Monaro region, Australia, who died between 1 February 2015 and 31 May 2016. Death data were collected from local funeral directors, RAC facilities, one multi-purpose heath service and obituary notices in the local media. The outcome variable was PoD: RAC, local hospital or out-of-region tertiary hospital. For the permanent RAC residents, the outcome of interest was dying in RAC or dying in hospital. Cross tabulations by PoD and key demographic data were performed. Pearson Chi squared tests and exact p-values were used to determine if any of the independent variables were associated with PoD. Using an ethnographic approach, data were collected from 12 face-to-face, open-ended interviews with four RAC residents, with a life expectancy of ≤6 months, and six family caregivers. Interviews were audio-recorded, transcribed and analysed thematically. Fifty-one (78.5%) of the permanent residents died in RAC; 21.5% died in hospital. Home was the initial preferred POD for most interviewed participants; most eventually accepted the transfer to RAC. Long-term residents considered RAC to be their "home"-a familiar place, and an important part of their rural community. The participants did not consider a transfer to hospital to be necessary for end-of-life care. Further work is required to explore further the perspectives of rural RAC residents and their families, and if transfers to hospital are avoidable.

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

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.

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

BACKGROUND: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. AIMS: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. DESIGN: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. RESULTS: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'. CONCLUSION: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

Place of death in rural palliative care: A systematic review.

BACKGROUND: There have been many studies on the actual and preferred place of care and death of palliative patients; however, most have been whole population surveys and/or urban focused. Data and preferences for terminally ill rural patients and their unofficial carers have not been systematically described. AIM: To describe the actual place of death and preferred place of care and/or death in rural palliative care settings. METHOD: A systematic mixed studies review using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. DATA SOURCE: PubMed, PsychINFO, Scopus and CINAHL databases were searched (September to December 2014); eligible quantitative and qualitative studies included preferred and/or actual place of death/care of rural, regional or remote residents; rural data that are clearly identifiable; death due to palliative condition (malignant and non-malignant) or survey of participants with current or hypothetical life-limiting illness. RESULTS: A total of 25 studies described actual place of death; 12 preferred place of care or death (2 studies reported both); most deaths occurred in hospital with home as the preferred place of care/death; however qualitative studies suggest that preferences are not absolute; factors associated with place are not adequately described as rurality was an independent variable; significant heterogeneity (rural setting and participants), however, many areas had a greater chance of home death than in cities; rural data are embedded in population reports rather than from specific rural studies. CONCLUSION: Home is the preferred place of rural death; however, more work is needed to explore influencing factors, absolute importance of preferences and experience of providing and receiving palliative care in rural hospitals which often function as substitute hospice.

Siblings caring for and about pediatric palliative care patients.

BACKGROUND: The experiences of young people who have siblings with life-limiting illnesses are not well understood. AIM: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. DESIGN AND MEASUREMENT: Semistructured interviews were administered to participants and analyzed using qualitative inductive thematic analysis. SETTING AND PARTICIPANTS: Study subjects were 18 siblings of PPC patients aged 9 to 22 living in the Auckland area. RESULTS: The siblings of PPC patients held concerns about their siblings' impending death and desires to be involved in their lives and care. CONCLUSIONS: Siblings may benefit from opportunities to be involved in conversations about mortality and the care of their ill sibling. They are able to express their concerns and help provide care to PPC patients.

Perceptions of physically active men with prostate cancer on the role of physical activity in maintaining their quality of life: possible influence of androgen deprivation therapy.

OBJECTIVE: The primary aim of this study was to examine the perceptions of older men with prostate cancer regarding their quality of life and physical activity post-diagnosis, and the potential benefits and risks associated with being physically active. A secondary aim was to gain some preliminary insight into how these perceptions may differ as a function of androgen deprivation therapy (ADT). METHODS: Two focus groups were conducted, consisting of six ADT and eight non-ADT men, respectively. The probe questions used assessed the link between quality of life and physical activity as well as the benefits and risks associated with physical activity. Data were transcribed verbatim and themes identified using a general inductive thematic approach. RESULTS: The primary themes identified were sexual health, 'plumbing' and non-urogenital side-effects, return to and increased levels of physical activity post-diagnosis, physical health/function and psychological benefits of physical activity as well as over-doing it and age-related risks of excessive physical activity. However, not all themes were present in both the ADT and the non-ADT sub-groups. CONCLUSIONS: These results further highlight the link between physical activity and quality of life in prostate cancer survivors and how they use physical activity as a part of their survivorship process. Of particular interest was how several men on ADT used resistance training to counteract ADT-related side-effects affecting their masculinity. As the evidence for physical activity for prostate cancer survivorship is increasing, cancer clinicians and service providers should consider ways to better assist these men, especially those on ADT become more active.

The voices of young New Zealanders involved in pediatric palliative care.

The perspectives of young New Zealanders receiving pediatric palliative care (PPC) are not well understood. A qualitative study of the perceptions of 16 PPC patients and their siblings, aged 9 to 18, was conducted through audio and written diary accounts. Inductive thematic analysis revealed several concerns. of participants, including special treatment that patients had received, spending time with their families, their feelings of being judged or discriminated against, their sense of being understood themselves and of understanding others, and mortality. A nonjudgemental, open approach is recommended when consulting with patients and their siblings in order to determine their needs.

Caregivers' estimations of their children's perceptions of death as a biological concept.

Communication about death is often a sensitive topic in families with children. The present studied compared answers of 141 school children aged 5-7 to questions about death, and their caregivers' predictions. Children were interviewed, and caregivers answered on paper, questions on inevitability, applicability, irreversibility, cessation, causation, and personal mortality. For causation, cessation, and irreversibility, children were significantly more correct than caregivers expected, and girls were more correct on applicability. Communicating with children about death may not always be as caregivers expect.

Body composition, physical fitness, functional performance, quality of life, and fatigue benefits of exercise for prostate cancer patients: a systematic review.

CONTEXT: Prostate cancer patients, especially those on androgen deprivation therapy (ADT), experience many symptoms that make it difficult to maintain their independence and quality of life. Because ADT acts by means of reducing testosterone production, exercise may offset many of the ADT side effects and those of the cancer itself. OBJECTIVES: This systematic review of the literature evaluates whether exercise could reduce symptoms and improve quality of life for prostate cancer patients. METHODS: Using relevant databases and key words, 12 training studies were found meeting the inclusion and exclusion criteria. RESULTS: Grade A level evidence was observed for the benefits of exercise in improving muscular endurance, aerobic endurance, and overall quality of life, as well as reducing fatigue in prostate cancer patients. Grade B evidence also suggested that exercise may improve prostate cancer patients' muscle mass, muscular strength, functional performance (walking and sit to stand speed), as well as health-related, social and physical quality of life. These effects appeared greater for group-rather than home-based-exercise, especially if these programs included resistance training. CONCLUSION: It is recommended that most prostate cancer patients be encouraged to exercise regularly by their clinicians and significant others. Where possible, this exercise should be group-based and include some resistance training. Future research in this area should directly compare group- and home-based, as well as resistance, aerobic, and combined resistance and aerobic training to better elucidate the most effective forms of exercise for this population and what factors affect initiation and adherence to such programs.

A randomised feasibility study of EPA and Cox-2 inhibitor (Celebrex) versus EPA, Cox-2 inhibitor (Celebrex), resistance training followed by ingestion of essential amino acids high in leucine in NSCLC cachectic patients--ACCeRT study.

BACKGROUND: Cancer cachexia is a syndrome of progressive weight loss. Non-small cell lung cancer patients experience a high incidence of cachexia of 61%. Research into methods to combat cancer cachexia in various tumour sites has recently progressed to the combination of agents.The combination of the anti-cachectic agent Eicosapentaenoic acid (EPA) and the cyclo-oxygenase-2 (COX-2) inhibitor celecoxib has been tested in a small study with some benefit. The use of progressive resistance training (PRT) followed by the oral ingestion of essential amino acids (EAA), have shown to be anabolic on skeletal muscle and acceptable in older adults and other cancer groups.The aim of this feasibility study is to evaluate whether a multi-targeted approach encompassing a resistance training and nutritional supplementation element is acceptable for lung cancer patients experiencing cancer cachexia. METHODS/DESIGN: Auckland's Cancer Cachexia evaluating Resistance Training (ACCeRT) is an open label, prospective, randomised controlled feasibility study with two parallel arms. All patients will be treated with EPA and the COX-2 inhibitor celecoxib on an outpatient basis at the study site. In the experimental group patients will participate in PRT twice a week, followed by the ingestion of essential amino acids high in leucine. A total of 21 patients are planned to be enrolled. Patients will be randomised using 1:2 ratio with 7 patients enrolled into the control arm, and 14 patients into the treatment arm. The primary endpoint is the acceptability of the above multi-targeted approach, determined by an acceptability questionnaire. DISCUSSION: To our knowledge ACCeRT offers for the first time the opportunity to investigate the effect of stimulating the anabolic skeletal muscle pathway with the use of PRT along with EAA alongside the combination of EPA and celecoxib in this population. TRIAL REGISTRATION: Netherlands Trial Register (NTR): ACTRN12611000870954.

What does care mean? Perceptions of people approaching the end of life.

OBJECTIVE: This project sought to better understand the nature of medical care from the perspective of people approaching the end of life. METHOD: We asked 13 people who were dying (and a family member for each) to describe their care and the ways in which doctors' behavior fosters or inhibits the feeling that they were cared for as individuals. Interviews took a phenomenological approach. Data analysis was thematic. RESULTS: Examples used by participants as evidence of care varied widely and showed the potentially complex nature of quality care. Participants' descriptions reflect the many ways people can impart and experience care as unique individuals in the medical context. They also provide clear examples of what uncaring behaviour looks and feels like. SIGNIFICANCE OF RESULTS: The importance of care was clearly illustrated through descriptions of the benefits of caring behavior and the negative consequences of uncaring behavior. In order to demonstrate the empathy and compassion expected and assumed of medical graduates and engender a feeling of being cared for among their patients, doctors need to invite and develop a relationship with those they are caring for. There needs to be a focus on each member of the caring relationship primarily as individual human beings.

What can people approaching death teach us about how to care?

OBJECTIVE: This study sought to hear what patients approaching death had to say about doctor-patient interactions and care in order that doctors can learn how to demonstrate care more effectively so that each patient feels cared for as an individual. METHODS: In semi-structured interviews, 13 people dying of cancer shared their experiences and perspectives on care within the patient-doctor relationship. RESULTS: Participants' recollections of experiences with doctors showed that genuine demonstration of care begins with doctors seeking common ground with the patient as a fellow human being and individual. The psychological and physical suffering that results from allowing stereotypical assumptions and behaviours to shape doctor-patient interaction was clear. CONCLUSION: The consequences of allowing the stereotypes and power of the primary context in which patients and doctors interact challenge the process of building a caring doctor-patient relationship. Caring doctors overcame this by exploring and carefully attending to the individual characteristics and needs of patients as people first and foremost. PRACTICE IMPLICATIONS: To demonstrate genuine care doctors must learn to recognise and question the social expectations and inherent assumptions of medical contexts and roles of patient and doctor and allow unique characteristics of patient and context to guide their interactions.

Recognition, reflection, and role models: critical elements in education about care in medicine.

OBJECTIVE: Medical education can be described as a socialization process that has a tendency to produce doctors who struggle to convey to patients that they care. Yet, for people who are suffering, to enjoy the quality of life they are entitled to, it is important that they feel cared for as people, rather than simply attended to as patients. METHOD: This article addresses how we teach medical students the art of caring for the person rather than simply treating the disease--a question particularly relevant to end-of-life care where, in addition to the physical needs, attention to the psychosocial, emotional, and spiritual needs of the patient is paramount. Following an overview of what it is to care and why it is important that patients feel cared for, we investigate how we learn to care and develop caring human relationships, describing the development and display of empathy in adulthood and the developmental impact of human interaction. RESULTS: We outline evidence of situational barriers to effective education about care in medicine including role models, ward culture, and the socialization process. SIGNIFICANCE OF RESULTS: We then propose a model for medical education based on patient contact, reflection, self-care, role model development, and feedback that will see students learn the art of human care as well as the science of disease management.