Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation.
Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators.
Design: A statewide initiative to improve ACP setting/subjects—trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet.
Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession.
Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured.
Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.
Background: Critical care physicians often have to make challenging decisions to withhold/withdraw life-sustaining treatments. As a result of society's increasingly cultural diversity such decision making often involves patients from ethnic minority groups, which might pose extra challenges.
Objective: To investigate withholding/withdrawing life-sustaining treatments with patients from ethnic minority groups and their families during critical care.
Design: Ethnographic fieldwork (observations, in-depth interviews and reading patients' medical files).
Setting/Subjects: Eighteen patients from ethnic minority groups, their relatives, physicians and nurses were studied in one intensive care unit of a multi-ethnic urban hospital (Belgium).
Results: During decision making physicians had a very central role. The contribution of patients and nurses was limited, while families' input was more noticeable. Decision making was hampered by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different approaches were used by physicians to overcome difficulties, which often reflected their tendency to control decision making, for example, stressing their central role. At times their approaches reflected their inability to align families' wishes with their own, for example, when making decisions without explicitly informing relatives.
Conclusions: Withholding/withdrawing life-sustaining treatments in a multi-ethnic critic care context has a number of alarming difficulties, such as how to take families' input correctly into account. It is important that decision making happens in a cultural sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with interprofessional health care workers/other services.
Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.
Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.
Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.
BACKGROUND: Compared to Whites, racial/ethnic minorities are less likely to enroll in hospice and if they enroll, more likely to experience poor quality care. Building cultural competence (CC) among hospice staff is a strategy that may reduce disparities.
OBJECTIVE: To describe the state of CC training across hospices.
DESIGN: National survey of hospices' practices to promote CC.
RESULTS: A total of 197 hospices participated; most were not-for-profit (80%) with an average daily census less than 100 (47%); 73% offered staff cultural competence training (CCT). There were no differences in characteristics of hospices who offered CCT and those that did not. Of hospices offering CCT, 61% held it annually. Most trainings were 1 hour (60%); content was delivered via web (58%) and/or lecture (58%). While over 90% of staff (i.e., nurses, social workers, chaplains) completed CCT, a smaller proportion of medical directors (64%), senior leaders (71%) and board members (26%) did so. Most common topics were: cross-cultural communication, death/illness beliefs, spirituality's role, and healthcare disparities. The majority focused on African-Americans (83%), Hispanics (76%), and Asians (62%)-the most common U.S. minority groups. Almost 30% reported no effectiveness assessment of CCT, while 51% reported a quiz at the end of training. Most hospices offered some CCT.
CONCLUSIONS: CCT has been shown to improve healthcare providers' knowledge and skills in caring for diverse patients and it is associated with increased patient satisfaction. Future research should evaluate effectiveness of CCT in improving the ability of hospices to deliver high quality end-of-life care to diverse groups of older adults.
In the Western world including Canada, grievous and irredeemable health conditions, which cause unbearable suffering, has given support to the legalization of medical aid in dying (MAiD). It is unknown how Asian Buddhists who are in contact with the Western culture perceive MAiD. In this qualitative study, 16 Asian Buddhists living in Montreal took part in a semi-structured interview. Contrary to general findings in the literature, religious affiliation do not always determine moral stances and practical decisions when it comes to MAiD. Some participants were willing to take some freedom with the doctrine and based their approval of MAiD on the right to self-determination. Those who disapproved the use of MAiD perceived it as causing unnatural death, creating bad karma, and interfering with a conscious death. End-of-life (EoL) care providers have to remain sensitive to each patient's spiritual principles and beliefs to understand their needs and choices for EoL care.
AIM: To consider the possibility of consequences beyond the alleviation of perceived individual suffering, for families left behind, communities and society as a whole should the End of Life Choice Act gain public support in the September 2020 referendum in New Zealand.
METHOD: This study used the Yin case study approach to undertake a single semi-structured in-depth interview with a participant who self-identified as having first-hand experience of assisted dying from a relative's perspective (in a country where this is legal). Thematic analysis was used to identify themes and trends from the interview transcript.
RESULTS: Three key themes emerged from the interview: the potential for assisted dying becoming an expectation for others to pursue when unwell and possibly facing a life-threatening illness; the notion of stigma being associated with the individual using assisted dying legislation and the family left behind; and that there may be the potential for such legislation to produce a contagion effect.
CONCLUSION: The introduction of assisted dying legislation into New Zealand culture provides a potential hotspot for family, community and social discord that may not be easily remedied. Further study in New Zealand is required to investigate whether a contagion effect of assisted dying is possible, and how as a society, we negotiate what could become a conflicted pathway potentially complicated by prejudice, judgement and stigma.
Palliative care is increasingly confronted with cultural diversity. This can lead to various problems in practice. In this perspective article, the authors discuss in more detail which issues play a role in culture-sensitive palliative care, why naive culturalism will not solve such problems and in which direction research into this aspect of care can be further elaborated.
OBJECTIVES: This study explored associations between birth region, socio-demographic predictors and advance care planning (ACP) uptake.
METHODS: A prospective, multi-center, cross-sectional audit study of 100 sites across eight Australian jurisdictions. ACP documentation was audited in the health records of people aged 65 years or older accessing general practice (GP), hospital and long-term care facility (LTCF) settings. Advance care directives (ACD) completed by the person ('person completed ACDs') and ACP documents completed by a health professional or other person ('health professional or someone else ACP') were counted. Hierarchical multi-level logistic regression assessed associations with birth region.
RESULTS: From 4187 audited records, 30.0% (1152/3839) were born outside Australia. 'Person completed ACDs' were less common among those born outside Australia (21.9% vs 28.9%, X2 (1, N = 3840) = 20.3, p & 0.001), while 'health professional or someone else ACP' was more common among those born outside Australia (46.4% vs 34.8%, X2 (1, N = 3840) = 45.5, p & 0.001). Strongest associations were found for those born in Southern Europe: 'person completed ACD' (OR = 0.56, 95% CI = 0.36-0.88), and 'health professional or someone else ACP' (OR = 1.41, 95% CI = 1.01-1.98). English-language proficiency and increased age significantly predicted both ACP outcomes.
DISCUSSION: Region of birth is associated with the rate and type of ACP uptake for some older Australians. Approaches to ACP should facilitate access to interpreters and be sensitive to diverse preferences for individual and family involvement in ACP.
Cette BD présente neuf récits humoristiques explorant avec ironie la présence de la mort dans la culture contemporaine, au travers du rapport obsessif qu’entretient l’auteure avec elle depuis son enfance.
BACKGROUND: Palliative care providers serving Chinese patients lack a culture-specific model of communication, a strong evidence base for this and clear guidance on its application. Thus, providers find it challenging to address patients' dignity, and determine their priorities and preferences for treatments and care, at the patients' final stage of life.
AIM: This study explores the culture-specific influences and current understanding of end-of-life (EOL) communication in the Chinese context.
METHODS: A qualitative systematic review of qualitative studies was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PsycINFO, PubMed and ERIC databases were searched for studies between January 1994 and July 2019, using keywords 'end of life', 'terminal care', 'communication' and 'Chinese'. Included studies were appraised with Critical Appraisal Skills Programme criteria.
RESULTS: The search strategy yielded 982 entries and 13 studies were included. Six themes were identified in EOL communication in the Chinese context: (1) Chinese philosophies on the meaning of 'good death'. (2) Negative attitudes towards communication on dying. (3) EOL communication as a taboo topic. (4) Clinician-centred approaches to treatment-decision making. (5) Family expectations being prioritised over patient self-autonomy in prognosis disclosure. (6) Care-providers expressing puzzlement over cultural preferences regarding EOL communication.
CONCLUSIONS: The review detailed the complexity of EOL communication in the Chinese context, urging for a communication model distinct from Western-based practices. Future research could explore a validated communication framework that addresses the local culture, thus enabling an understanding of patients' priorities and interpreting EOL encounters from a cross-cultural perspective.
OBJECTIVE: The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death.
METHODS: Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016.
RESULTS: Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered.
CONCLUSION: This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume 'good death' is a suitable outcome statement.
A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
Purpose: To explore the experiences of expatriate nurses caring for Muslim patients near end-of-life in a palliative care unit in the United Arab Emirates.
Methods: A qualitative descriptive study, with data collected through semi structured individual interviews with nine expatriate nurses working in a palliative care unit in one hospital in the United Arab Emirates. Thematic analysis of the data transcripts used a structured inductive approach.
Results: Analysis of the interview transcripts yielded three themes. First, language was a significant barrier in end-of-life care but was transcended when nurses practiced authentically, using presence, empathetic touch and spiritual care. Secondly, relationships between nurses, patients and families were strengthened over time, which was not always possible due to late presentation in the palliative care unit. Finally, nurses were continually in discussions with physicians, families and other nurses, co-creating the meaning of new information and experiences within the hospital policy context.
Conclusion: For expatriate nurses, palliative nursing in a Muslim middle eastern country is complex, requiring nurses to be creative in their communication to co-create meaning in an emotionally intensive environment. Like other palliative care settings, time can strengthen relationships with patients and their families, but local cultural norms often meant that patients came to palliative care late in their disease trajectory. Preparing expatriate nurses for work in specialist palliative care settings requires skill development in advanced communication and spiritual practices, as well as principles of palliative care and tenets of Muslim culture.
Objective: To describe the landscape of digital resources available for grief and bereavement, and to explore cultural variations through the analysis of patterns in three languages with a multinational repartition (English, French and Spanish).
Methods: For each language, websites were collected through a systematized approach and classified according to their category (governmental, health, educational, social media, conventional media, spiritual), their country of origin, and the type of support they offered (practical support, services, peer support, informational support, resources).
Results: A total of 2587 websites (English: 1003; French 678; Spanish: 906) were analyzed. Cultural variations were observed both for the websites’ categories and the types of support. Half of the websites presented at least one type of support, informational support being the most prevalent, followed by practical support. English websites presented significantly more support than Spanish websites, with French websites in between.
Practice implications: By using an extensive survey, our results allow for a general mapping of online websites that is comparable across languages, but also unveil digital dynamics unknown to date. These results further the multicultural understanding of digital support for grief and bereavement, propose an innovative and operational typology for online support and raise awareness of the current support landscape.
Background: The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications.
Methods: A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O’Malley’s methodological framework was followed for scoping reviews.
Results: Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs.
Conclusion: A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.
This study aimed to explore spiritual beliefs held by Jordanian patients receiving palliative care. In order to accomplish this aim, three objectives were specified: 1) identify the spiritual beliefs of adult patients receiving palliative care, 2) to develop an Arabic version of the beliefs and values scale, and 3) to identify the perception of spirituality of adult patients receiving palliative care. Cross-sectional descriptive research design was used to describe the spiritual beliefs. The response rate was 70%; non-probability convenience sampling method was used for (N = 119) adult palliative patients who are receiving care at specialized oncology Center in Jordan. The findings revealed that the spirituality religious beliefs aspect total mean score (3.38 ± .33) was higher than the spirituality non-religious beliefs aspect total mean score (2.49 ± .50). There was a significant impact on enhancing spirituality score with patient who had attended a course about spirituality (p = .007) or had been visited by religious adviser (p = .022). Statistically significant differences were found between the religious beliefs score and age (p = .014), educational level (p = .015), and the patient who had attended a course about spirituality (p = .27). The conceptualizations of spirituality highly cultural are marked, and it differs from populations to others; it appears that spirituality among Middle East population is different than Western populations.
Aims: This review aims to explore the extant literature on the current utilization of ACP in Kisin order to obtain a comprehensive understanding of their health disparities and to determine evidence-based best practices to integrate culturally-competent ACP for EOL care of KIs.
Design: A systematic integrative review of the literature Data Sources: Four electronic databases including PubMed, the Cumulative Index of Nursing and Allied Health Literature, the Cochrane Library, and Embase.
Method: The detailed search strategy for databases implicated a combination of MeSHkeywords and associated terms, which can be found in Table A.
Results: Three themes emerged in relation to fundamental components in the integration of culturally-competent ACP for EOL of KIs: (1) cultural characteristics of KIs; (2) disparities in ethnic-oriented ACP and EOL care resources in KIs; and (3) KIs’ perspectives on ACP.
Conclusion: The findings of this review indicate that culturally-competent ACP resources for KIsare presently quite insufficient. It is determined that much future research is needed on how culturally-competent ACP can best augment the quality of EOL care for KIs, and on how specific interventions can effectively implement ACP in community settings. Impact: Such ongoing research dedicated to the development of feasible culturally competent practice guidelines is anticipated to markedly reduce health disparities and promote ACP in KIs. The recommendations in this review may support Korean primary HCPs, Korean health care center administrators, Korean health maintenance organizations (HMOs), Korean advance care nurse practitioners in hospice and palliative care, and nurse researchers in their work.
Much of the scholarly literature sees death as a taboo topic for Chinese. To test this assumption, this study held seven focus groups in the Greater Toronto Area in 2017. It found that the majority of the older Chinese immigrant participants talked about death freely using either the word death or a euphemism. They talked about various issues including medical treatment and end-of-life care, medical assistance in dying, death preparation, and so on. A small number did not talk about death, but it seemed their reluctance was related to anxiety or discomfort or simply reflected a choice of words. The study concludes death as taboo could be a myth, at least for older Chinese immigrants.
Due to cultural traditions, most Taiwanese do not have an advance directive or healthcare proxy. We explored how patients with mild dementia in Taiwan may still make self-determined decisions concerning advance directives for their healthcare and end-of-life care choices as the disease progresses. We examined 260 respondents with mild dementia at a Taiwan medical center: 199 patients who agreed (and 61 patients who disagreed) with the concept of advance directives completed a structured questionnaire. Multiple logistic regression models to determine the between-group differences revealed that the following were positively associated with approval of end-of-life directives: maintaining one's quality of life (adjusted odds ratio [AOR], 2.44; 95% CI: 1.07-5.53), discussion with family members (AOR, 3.50; 95% CI: 1.49-8.26), and friend support networks (AOR, 3.36; 95% CI: 1.34-8.43). Cardiopulmonary resuscitation (AOR, 0.27; 95% CI: 0.09-0.79) was negatively associated with approval. There was also a positive association between the support of the legal validity of end-of-life directives (OR, 1.93; 95% CI: 1.07-3.48), without other confounding factors. In Taiwanese society, we remain mindful of cultural influences that may impact patients, including maintaining one's quality of life, discussion with family members, and friend/support networks. These influences may help dementia patients complete their advance directives.