Health care staff's strategies to preserve dignity of migrant patients in the palliative phase and their families. A qualitative study.

AIMS: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families. BACKGROUND: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake. METHODS: We performed five focus group discussions with care staff and one with key figures with diverse ethnic backgrounds in the Netherlands (2018-2020). Thematic analysis was used. RESULTS: Care staff creatively safeguarded the patient's dignity in daily care by attending to personal needs concerning intimate body care and providing non-verbal attention. Care staff had difficulties to preserve dignity, when the patient's family engaged themselves in the patient's choices or requests. According to care staff, the interference of family impeded the patient's quality of life or threatened the patient's dignity in the last days, or family member's choices (seemingly) prevailed over the patient's wishes. Care staff safeguarded dignity by catering to cultural or religious practices at the end of life and employing cultural knowledge during decision making. Key figures emphasized to make decisions with patient and family together and to listen more carefully to what patients mean. Bypassing family was experienced as harmful, and repetitively informing family, about, for example, the patient's disease or procedures in the nursing home, was experienced as ineffective. CONCLUSION: To preserve the patient's dignity, attention is needed for relational aspects of dignity and needs of family, next to patients' individual needs. IMPACT: Care staff should be supported to employ strategies to engage family of migrant patients, by, for example, acknowledging families' values, such as giving good care to the patient and the importance of religious practices for dignity.

Community Education for a Dignified Last Phase of Life for Migrants: A Community Engagement, Mixed Methods Study among Moroccan, Surinamese and Turkish Migrants.

Community engagement and -education are proposed to foster equity in access to care and to ensure dignity of migrant patients in the last phase of life, but evidence is lacking. We evaluated nine community educational interactive meetings about palliative care (136 participants totally)- co-created with educators from our target groups of Moroccan, Surinamese and Turkish migrants-with a mixed methods approach, including 114 questionnaires, nine observations, nine interviews with educators, and 18 pre- and post- group- and individual interviews with participants. Descriptive and thematic analysis was used. 88% of the participants experienced the meetings as good or excellent. Educators bridged an initial resistance toward talking about this sensitive topic with vivid real-life situations. The added value of the educational meetings were: (1) increased knowledge and awareness about palliative care and its services (2) increased comprehensiveness of participant's wishes and needs regarding dignity in the last phase; (3) sharing experiences for relief and becoming aware of real-life situations. Community engagement and -education about palliative care for migrants effectively increases knowledge about palliative care and is a first step towards improved access to palliative care services, capacity building and a dignified last phase of life among migrants.

Care and Decision-Making at the End of Life for Patients With a Non-Western Migration Background Living in The Netherlands: A Nationwide Mortality Follow-Back Study.

CONTEXT: Migrant populations across Europe are aging and will increasingly need end-of-life care. OBJECTIVE: The objectives of this study were to gain insight into end-of-life care and decision-making for patients with a non-western migration background and assess differences compared to patients with a Dutch or western migration background. METHODS: A mortality follow-back study was conducted using a stratified sample of death certificates of persons who died between August and December 2015, obtained from the central death registry of Statistics Netherlands. Questionnaires were sent to the attending physician (n = 9351; response 78%). Patients aged ≥18 years who died a nonsudden death were included in this study (n = 5327). RESULTS: Patients with a non-western migration background are more likely than patients with a Dutch or western migration background to be admitted to and die in hospital (51.6% vs. 33.9% [OR 1.74; 95% CI 1.26-2.41]; 39.1% vs. 20.1% [OR 1.96; 95% CI 1.39-2.78]); less likely to receive morphine or morphine-like medication and continuous deep sedation (72.8% vs. 80.1% [OR 0.62; 95% CI 0.43-0.89]; 16.8% vs. 25.2% [OR 0.52; 95% CI 0.34-0.80]); and more likely to receive end-of-life care that, according to physicians, is directed at curation for too long (6.8% vs. 1.7% [OR 3.61; 95% CI 1.83-7.12]). End-of-life decisions are made less frequently for patients with a non-western migration background (71.6% vs. 79.2% [OR 0.64; 95% CI 0.45-0.91]). Characteristics of decision-making are similar. CONCLUSION: End-of-life care for patients with a non-western migration background focuses more, or longer on maximum, curative treatment and end-of-life decisions are made less often.