American Indians’ Experiences of Life-Threatening Illness and End of Life

Colclough, Yoshiko; Brown, Gary M

doi:10.1097/njh.0000000000000086

Cited by 16 publications

(22 citation statements)

References 8 publications

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“…of articles Collaboration Community Engagement X [ 14 , 28 ] X [ 22 ] X [ 24 , 26 ] X [ 6 , 23 , 25 , 27 ] 9 Family Engagement X [ 14 , 31 ] X [ 32 – 34 ] X [ 24 , 30 ] X [ 25 , 27 , 29 ] 10 Health Care Provider Collaboration X [ 28 ] None identified None identified X [ 25 ] 2 Service Delivery Funding X [ 14 , 37 ] None identified None identified X [ 6 , 23 , 25 ] 5 Communication X [ 14 , 31 , 37 ] X [ 33 , 34 , 42 ] X [ 24 , 26 , 65 ] X [ 6 , 23 ] 11 Policy Change X [ 37 ] ...…”

Section: Resultsmentioning

confidence: 99%

“…Throughout the literature, the need to collaborate and to engage meaningfully with communities [ 6 , 14 , 22 – 28 ] and families [ 14 , 24 , 25 , 29 – 34 ] before designing and implementing any program was highlighted as a fundamental prerequisite for progress. Most of the studies were conducted in rural or remote locations where EOL care provisions were often not well-developed or well-understood.…”

Section: Resultsmentioning

confidence: 99%

“…There was a strong preference for living with family and within the community at EOL [ 23 , 29 , 31 , 33 , 35 – 37 , 39 , 41 – 43 ]. Family members generally wanted to be with their loved ones and to fulfil their wishes, including finding ways of enabling care and support to die at home.…”

Section: Resultsmentioning

confidence: 99%

“…The importance of dying at home or being cared for at home was a common theme for Indigenous people across the four countries [ 2 , 26 , 29 , 31 , 32 , 39 – 41 , 43 , 44 ]. Special cultural ceremonies and rituals practiced at the EOL were regarded as important.…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review

et al. 2018

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BackgroundIndigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern.ObjectivesTo examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples’ preferences, needs, opportunities and barriers to palliative care.MethodsA comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly’s hierarchy of evidence-for-practice in qualitative research.ResultsOf 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples’ experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements.ConclusionsThe results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0325-1) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review

et al. 2018

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“…When the hospice philosophy was explained, most AIs appeared to agree with it. 15 However, their concerns included, but were not limited to, relocation, finance, communications with HCPs, and lack of family and community support. 2 Especially, care done by nonfamily members with fees made some ANs feel awkward.…”

Section: Perception Of Hospice/end-of-life Care and Successful Programsmentioning

confidence: 99%

Moving Toward Openness: Blackfeet Indians’ Perception Changes Regarding Talking About End of Life

Colclough

Brown²

2018

Am J Hosp Palliat Care

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This study was conducted to examine cultural appropriateness and readiness for the Blackfeet people in the United States talking about end of life. In the past, a taboo perception of Blackfeet traditional belief in end-of-life discussion was identified as a core barrier for hospice use. However, a recent anecdotal increase in hospice interest triggered the research team to investigate community-wide interest as well as traditional appropriateness of hospice introduction. The community-based participatory research approach was used to conduct the study. Using convenience sampling, we interviewed 10 tribally recognized Elders and surveyed 102 tribal members who were over 18 years old using a modified Duke End-of-Life Care Survey. Here, our report focused on the perception changes on end-of-life discussion. The elders' statements were divided into two, saying that an end-oflife discussion was not against tradition and that sickness and death would break the living spirit, thus no such discussion. Despite, the importance of a family gathering and the need for knowledge about end-of-life care were confirmed. The survey (response rate 100%; n ¼ 92) showed that 90% of the respondents thought dying was a normal part of life and 76% felt comfortable talking about death. In conclusion, there was a shift in the Blackfeet Indians' attitude toward end-of-life discussion from reluctance to at ease. Recommendations specific to the Blackfeet-related entities are presented.

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Ethical Aspects of Artificially Administered Nutrition and Hydration: An ASPEN Position Paper

et al. 2021

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The American Society for Parenteral and Enteral Nutrition (ASPEN) Position Paper focus is on applying the 4 ethical principles for clinician's decision-making in the use of artificially administered nutrition and hydration (AANH) for adult and pediatric patients. These basic principles are (1) autonomy, respect the patient's healthcare preferences; (2) beneficence, provide healthcare in the best interest of the patient; (3) nonmaleficence, do no harm; and (4) justice, provide all individuals a fair and appropriate distribution of healthcare resources. Preventing and resolving ethical dilemmas is addressed, with an emphasis on a collaborative, interdisciplinary approach. Optimizing early communication and promoting advance care planning, involving completion of an advance directive, including designation of a surrogate decision-maker, are encouraged. Clinicians achieve respect for autonomy when they incorporate the patient, family, community, country, geographical, and presumed cultural values and religious belief considerations into ethical decision-making for adults and children with a shared decision-making process. These discussions should be guided by the 4 ethical principles. Hospital committees and teams, limited-time trials, clinician obligation with conflicts, and forgoing of AANH are addressed. Specific patient conditions are addressed because of the concern for potential ethical issues: coma, decreased consciousness, and dementia; advanced dementia; cancer; eating disorders; and end-stage disease/terminal illness. Incorporated in the Position Paper are ethical decisions during a pandemic and a legal summary involving ethical issues. International authors presented the similarities and differences within their own country or region and compared them with the US perspective.

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American Indians’ Experiences of Life-Threatening Illness and End of Life

Cited by 16 publications

References 8 publications

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review

Moving Toward Openness: Blackfeet Indians’ Perception Changes Regarding Talking About End of Life

Ethical Aspects of Artificially Administered Nutrition and Hydration: An ASPEN Position Paper

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