The role of acculturation in the process of advance care planning among Chinese immigrants: A narrative systematic review.

BACKGROUND: Acculturation is the process of two different cultures coming into contact. It is unclear how acculturation influences Chinese immigrants' engagement in advance care planning due to the complexity and multifaceted nature of both acculturation and advance care planning. AIMS: To synthesize evidence regarding the role of Chinese immigrants' acculturation in their engagement in advance care planning. DESIGN: Systematic mixed-method review, registered in PROSPERO (CRD42021231822). DATA SOURCES: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for publications until January 21, 2021. RESULTS: Twenty-one out of 1112 identified articles were included in the analysis. Of those 21 articles, 17 had a qualitative design and 13 originated from the United States. Three of four quantitative studies reported that higher acculturation levels were associated with better knowledge or higher rate of engagement in advance care planning. Analysis of qualitative studies showed that Chinese immigrants' engagement in advance care planning was associated with their: (1) self-perceived cultural identity (native or non-native); (2) interpretation of filial piety (traditional or modern); and (3) interpretation of autonomy (individual or familial). To facilitate their engagement, Chinese immigrants prefer an implicit approach, non-family-related initiators, contextualization advance care planning in Chinese culture and using Chinese language. CONCLUSION: Chinese immigrants' willingness to engage in advance care planning varied with their acculturation level. To engage them in advance care planning, we recommend adapting the introduction of advance care planning to address people's perceptions of their cultural identity, filial piety, and autonomy, as well as their preference for certain approach, initiator, context, and language.

Evaluating quality of care at the end of life and setting best practice performance standards: a population-based observational study using linked routinely collected administrative databases.

BACKGROUND: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. METHODS: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. RESULTS: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. CONCLUSIONS: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice.

Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives.

BACKGROUND: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. AIM: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives' satisfaction with treatment and care. DESIGN: Mixed-methods study, including a survey and focus group study. SETTING/PARTICIPANTS: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. RESULTS: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients' and relatives' lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). CONCLUSIONS: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

Declining oral intake towards the end of life: how to talk about it? A qualitative study.

BACKGROUND: Decreasing oral intake is common towards the end of life and a potential source of distress and concern for patients, relatives, whanau and clinicians. This paper provides insight to inform practice regarding clinicians' perceptions, practices, responses and communication with patients and their companions regarding declining oral intake towards the end of life. METHODS: In this qualitative study ten specialist palliative care staff participated in semi-structured interviews. Qualitative thematic analysis was used to analyse the data. FINDINGS: Three themes were identified: declining oral intake was a natural part of the dying process; responding empathetically; and clinicians described specific aims and ways regarding communication. CONCLUSION: Insight into clinicians' endeavours to manage declining oral intake and support the wellbeing of patients, families, and whanau can inform practice. However the perspectives of family, whanau and health professionals continue to show significant variation regarding the communication given and received around declining oral intake towards the end of life.

How patients and relatives experience a visit from a consulting physician in the euthanasia procedure: a study among relatives and physicians.

This study investigated the impact of a visit from a consulting physician on the patient and the relatives during the euthanasia procedure in The Netherlands. Data on experiences with the consultant's visit were collected from 86 relatives and 3,614 general practitioners, who described their most recent request for euthanasia or physician-assisted suicide. More than three-quarters of the patients experienced the visit as they had expected, or became more positive. Although about 1 out of 5 patients had negative experiences, this study indicates that, in general, a visit from a consulting physician is not perceived to be burdensome for patients.