As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
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Background: end-of-life care is not always in line with end-of-life preferences, so patients do not always die at their preferred place of death (PPD). This study aims to identify factors associated with patients' PPD and changes in PPD. Methods: we prospectively collected data on PPD at four time points within 6 months from 230 acutely hospitalised older patients who were part of the control group in a stepped-wedge randomised controlled trial. Associations between patient characteristics and preferences were calculated using multivariable (multinomial) logistic regression analysis. Results: the mean age of participants was 80.7 years. 47.8% of the patients had no PPD at hospital admission. Patients previously admitted to hospital preferred to die at home (home versus no preference: odds ratio [OR] 2.38, 95% confidence interval [CI] 1.15-4.92; home versus healthcare facility: OR 3.25, 95% CI 1.15-9.16). Patients with more chronic diseases preferred the healthcare facility as their PPD (healthcare facility versus no preference: OR 1.33, 95% CI 1.09-1.61; healthcare facility versus home: OR 1.21, 95% CI 1.00-1.47). 32 of 65 patients changed their preference during follow-up, and most of these had no PPD at hospital admission (home versus no preference: OR 0.005, 95% CI ≤0.001-0.095) and poorer self-rated well-being (OR 1.82, 95% CI 1.07-3.08). Conclusions: almost half of the patients had no PPD at baseline. Previous hospital admission, having more chronic diseases and living alone are associated with having a PPD. Introducing PPD could make older people aware of PPD and facilitate optimal palliative care.
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Background: A transitional care pathway (TCP) could improve care for older patients in the last months of life. However, barriers exist such as unidentified palliative care needs and suboptimal collaboration between care settings. The aim of this study was to determine the feasibility of a TCP, named PalliSupport, for older patients at the end of life, prior to a stepped-wedge randomized controlled trial. Methods: A mixed-method feasibility study was conducted at one hospital with affiliated primary care. Patients were ≥ 60 years and acutely hospitalized. The intervention consisted of (1) training on early identification of the palliative phase and end of life conversations, (2) involvement of a transitional palliative care team during admission and post-discharge and (3) intensified collaboration between care settings. Outcomes were feasibility of recruitment, data collection, patient burden and protocol adherence. Experiences of 14 professionals were assessed through qualitative interviews. Results: Only 16% of anticipated participants were included which resulted in difficulty assessing other feasibility criteria. The qualitative analysis identified misunderstandings about palliative care, uncertainty about professionals' roles and difficulties in initiating end of life conversations as barriers. The training program was well received and professionals found the intensified collaboration beneficial for patient care. The patients that participated experienced low burden and data collection on primary outcomes and protocol adherence seems feasible. Discussion: This study highlights the importance of performing a feasibility study prior to embarking on effectiveness studies. Moving forward, the PalliSupport care pathway will be adjusted to incorporate a more active recruitment approach, additional training on identification and palliative care, and further improvement on data collection.
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