Palliative care for patients with end-stage renal failure: reflections from Central Australia

Fried, Ofra

doi:10.1191/0269216303pm797oa

Cited by 12 publications

(15 citation statements)

References 21 publications

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“…Some will not see the necessity to draw up an end of life plan due to sensitivities around issues of death. Oprah Fried in her reflections from Central Australia has commented that nearly all would want to die at home or on their ‘country’.…”

Section: Advance Health Directives and Advance Care Planning In Indigmentioning

confidence: 99%

“…Patients in the ‘remote setting’ who have chosen the non‐dialysis pathway will have to be supported and cared for at home. However, as Fried has shown conditions for the delivery of health care differ markedly between the remote desert region's of Central Australia as compared with major Australian cities. Palliative care services in conjunction with the primary care and renal teams should play a role in educating community members in how they can support the person and the family, thus helping to meet the person's choice of place to ‘finish up’ and helping family/community members feel they have appropriately supported the patient in the ‘finishing up’ process.…”

Section: Advance Health Directives and Advance Care Planning In Indigmentioning

confidence: 99%

See 1 more Smart Citation

ANZSN Renal Supportive Care Guidelines 2013

Brown

Crail²,

Masterson

et al. 2013

Nephrology

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Section: Advance Health Directives and Advance Care Planning In Indigmentioning

confidence: 99%

Section: Advance Health Directives and Advance Care Planning In Indigmentioning

confidence: 99%

ANZSN Renal Supportive Care Guidelines 2013

Brown

Crail²,

Masterson

et al. 2013

Nephrology

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“…Understanding how dialysis patients from racial/ethnic minority and lower socioeconomic status (SES) populations perceive ACP may be of particular importance given the disparities in morbidity and mortality experienced by these groups (13,14).…”

Section: Introductionmentioning

confidence: 99%

Advance Care Planning

Goff

Eneanya

Feinberg

et al. 2015

Clinical Journal of the American Society of Nephrology

102

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Background and objectives More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.Design, setting, participants, & measurements In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.Results Thirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.Conclusions Many participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

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“…Some studies collected information in particular locations, for example hospitals or nursing homes, which would indicate that the participants were in the last phase of life if not close to death (Kwok, Twinn and Yan 2007;Pleschberger 2007 ;Orpett-Long 2004;Ott 2008). In some cases, this was coupled with selecting participants with particular health conditions (Andersson, Hallberg and Edberg 2008 ;Becker 2002 ;Fried 2003;Gott et al 2008). The participants in the study by Gott et al had advanced heart disease and a similar prognosis to those with breast or prostate cancer but not a terminal diagnosis.…”

Section: Singaporementioning

confidence: 99%

Researching the end-of-life in old age: cultural, ethical and methodological issues

2010

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Increased life expectancy has strengthened the association between old age and death, with significant implications for gerontology and for the generation of knowledge through research. The global rise in chronic disease has had a significant impact on the duration and shape of dying trajectories in old age and their variations. This development poses ethical and methodological challenges for researchers, not least because it is often difficult to establish whether an older person is ' dying from ' as opposed to 'living with ' one or more diseases. This paper reports a comprehensive literature review of empirical research on the end-of-life in old age, and has two inter-related themes. It explores the social and cultural contexts of death and critically analyses the methods and ethical approaches adopted by researchers. Cross-cultural studies and studies in which cultural factors were of prime interest were selected with a view to examining the concept of a 'good death ' in old age. The paper discusses the evidence of cultural similarities and differences and the impact of social and cultural change on ideas concerning a good death. It identifies contemporary influences and pressures on end-of-life care for older people and discusses the significance of communication and the roles of families and service providers. The paper concludes by identifying substantive and methodological lessons for researchers in gerontology and suggests ways in which the impact of research might be enhanced.

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Palliative care for patients with end-stage renal failure: reflections from Central Australia

Cited by 12 publications

References 21 publications

ANZSN Renal Supportive Care Guidelines 2013

ANZSN Renal Supportive Care Guidelines 2013

Advance Care Planning

Researching the end-of-life in old age: cultural, ethical and methodological issues

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