Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

BACKGROUND: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. AIM: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time. DESIGN: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. SETTING/PARTICIPANTS: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. RESULTS: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. CONCLUSION: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

Physicians' views on the role of relatives in euthanasia and physician-assisted suicide decision-making: a mixed-methods study among physicians in the Netherlands.

BACKGROUND: Relatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails. METHODS: In a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and 20 were interviewed. The questionnaire included two statements on relatives' involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians' views on involving relatives in EAS decision-making. Interviews were thematically analysed. RESULTS: The majority of physicians want to know relatives' opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives' opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives' objections and providing appropriate information. Reasons for not taking relatives' opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision. CONCLUSIONS: Although physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives' opinions are not decisive.

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

BACKGROUND: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. METHODS: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. RESULTS: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). CONCLUSION: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. TRIAL REGISTRATION: NCT04678310. Registered 21/12/2020.

Distress among healthcare providers who provided end-of-life care during the COVID-19 pandemic: a longitudinal survey study (the CO-LIVE study).

INTRODUCTION: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress. METHODS: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation. RESULTS: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding. CONCLUSION: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed.

How end-of-life care was limited during the first 18 months of the COVID-19 pandemic: a longitudinal survey study among healthcare providers (the CO-LIVE study).

BACKGROUND: During the COVID-19 pandemic, the way in which end-of-life care was provided, underwent a lot of changes and therefor different domains of end-of-life care were impacted. The aim of this study is to describe whether health care providers considered end-of-life care (in medical, nursing, psychosocial and spiritual care) limited by the pandemic through the first 18 months of the COVID-19 pandemic, and examine associations with COVID-19 related circumstances of care (e.g. visit restrictions) and health care providers' characteristics. METHODS: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics and Generalized Estimating Equation. RESULTS: Of the respondents (n = 302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Especially in the first wave end-of-life care in all aspects was limited according to a substantial part of health care providers (between 29.7 and 57.7%). Psychosocial and spiritual care were more limited than medical and nursing care during all time periods. Care being limited according to health care providers was associated with visit restrictions, shortness of personal protective equipment or restrictions in caring for the deceased and decreased over time. CONCLUSION: The COVID-19 pandemic impacted different aspects of end-of-life care throughout the pandemic's first 18 months. Over the course of the pandemic health care providers seemed to have invented ways to adjust their work in order to minimize the effect of limiting measures. More involvement of health care providers in decision-making may improve the prioritization of measures to deal with crisis situations in care. These reflections highlight priorities during crises and the role healthcare providers could play in maintaining good end-of-life care. This remains relevant in new health crises, where care may differ from what is considered good quality of care.

Failed implementation of a nursing intervention to support family caregivers: An evaluation study using Normalization Process Theory.

AIM: To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT). DESIGN: An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes. METHODS: Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its 'normalization', consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring. RESULTS: Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice. Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages. Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload. Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation. CONCLUSION: Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study. IMPACT: What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care. What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment. Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders. REPORTING METHOD: This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR). PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public involved. TRIAL REGISTRATION: The trial was prospectively registered on the Dutch Trial Register (NL7702).

Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study.

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients' thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries.

Newspaper coverage of advance care planning during the COVID-19 pandemic: Content analysis.

COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

Death rituals and quality of life of bereaved relatives during the COVID-19 pandemic: Results of the observational CO-LIVE study.

Grief is a normal reaction after the death of a loved one. Death rituals are an integral part of the mourning processes. Not being able to carry out death rituals can affect relatives' quality of life. The aim was to evaluate death rituals during COVID-19 and their association with relatives' quality of life. In a Swedish nation-wide study relatives to persons who died during the COVID-19-pandemic received questionnaires about their quality of life and how they could perform death rituals. Association between quality of life and death rituals was analyzed with linear regression. Of the 324 relatives, a minority indicated that their loved one's funeral (17%) met their wishes. Not being able to carry out the funeral as desired was significantly associated with a lower quality of life (p = 0.006). The experiences during the pandemic revealed that it is important for people to perform death rituals according to their wishes.

Relatives' grief at three moments after death of a loved one during COVID-19 pandemic (the CO-LIVE study).

COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2-3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total). Analyses took place according to inductive content analysis. Losses were threefold: the loss of the loved one; of the (desired) way to say farewell, and of social support. We identified five ways in which the three COVID-19 related loss experiences interacted: overshadowed grief, cumulative grief, triggered grief, derailed grief, and conciliatory grief. This study demonstrated that pre-COVID-19 diagnoses and understandings of grief are not sufficient to picture grief during and after the COVID-19 pandemic. These grief experiences are more complex and deserve further exploration.

Supportive interventions for family caregivers of patients with advanced cancer: A systematic review.

OBJECTIVE: Family caregivers are often intensively involved in palliative and end-of-life cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer. METHODS: A systematic review was conducted using Embase, Medline Ovid, Web of Science, Cochrane, Google Scholar, and Cinahl. This review included quantitative studies published from January 2004 until January 2020 reporting on interventions to support family caregivers of patients with advanced cancer in all care settings. RESULTS: Out of 7957 titles, 32 studies were included. Twenty-two studies were randomized controlled trials. Interventions were delivered to four target populations: individual family caregivers (n = 15), family caregiver-patient dyads (n = 11), families (n = 2) and peer groups (n = 4). Most interventions (n = 26) were delivered face-to-face or by phone, two were delivered online. Most interventions included multiple components and were primarily aimed at supporting family caregivers' self-care. Twenty-nine interventions were shown to have beneficial effects on family caregiver outcomes, mostly in the psycho-emotional (n = 24), daily functioning (n = 13) and social dimension (n = 6). Individual interventions were mainly effective in the psycho-emotional dimension, dyad and family interventions in the psycho-emotional and social domain, and group interventions mainly had an effect on daily functioning. CONCLUSIONS: Interventions to support family caregivers in advanced cancer care vary widely. Most intervention studies reported beneficial effects for the wellbeing of family caregivers. There is evidence that the target group is associated with beneficial effects on different outcome dimensions.

Self-efficacy of advanced cancer patients for participation in treatment-related decision-making in six European countries: the ACTION study.

PURPOSE: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. METHODS: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. RESULTS: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium. CONCLUSION: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.

Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning.

BACKGROUND: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. AIM: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. DESIGN: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. SETTING/PARTICIPANTS: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. RESULTS: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). CONCLUSIONS: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.

Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives.

BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. OBJECTIVE: To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. METHODS: Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves. RESULTS: The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents' understanding of the distinction between CDS and other end-of-life care decisions, including euthanasia. Some perceived CDS as hastening death. CONCLUSION: The traditional view of CDS as a last resort option for a physician to relieve a patient's suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision-making and are mainly motivated by a wish to avoid suffering and exercise control at the end of life. These distinct views on CDS of patients, their relatives and healthcare providers should be reconciled in guidelines and protocols for CDS. PATIENT OR PUBLIC CONTRIBUTION: One of the authors in our team (G. H.) has experience with CDS as a relative and ensured that the patient/relative viewpoint was adequately reflected in the design and conduct of our study. In the preliminary phase of our study, G. H. adjusted the topic list so it was better adapted to the current practice of CDS. During the data analysis, G. H. read several interviews and took part in the open and critical discussion on central themes and core concepts as an important member of the author team, thereby guaranteeing the central position of the patient/relative perspective in our final research outcome.

Continuous deep sedation at the end of life: a qualitative interview-study among health care providers on an evolving practice.

BACKGROUND: Continuous deep sedation (CDS) can be used for patients at the end of life who suffer intolerably from severe symptoms that cannot be relieved otherwise. In the Netherlands, the use of CDS is guided by an national guideline since 2005. The percentage of patients for whom CDS is used increased from 8% of all patients who died in 2005 to 18% in 2015. The aim of this study is to explore potential causes of the rise in the use of CDS in the Netherlands according to health care providers who have been participating in this practice. METHODS: Semi-structured interviews were conducted and thematically analysed. Participants were Dutch health care providers (HCPs), working at patients' homes, hospices, elderly care facilities and in hospitals and experienced in providing CDS, who were recruited via purposeful sampling. RESULTS: 41 Health care providers participated in an interview. For these HCPs the reason to start CDS is often a combination of symptoms resulting in a refractory state. HCPs indicated that symptoms of non-physical origin are increasingly important in the decision to start CDS. Most HCPs felt that suffering at the end of life is less tolerated by patients, their relatives, and sometimes by HCPs; they report more requests to relieve suffering by using CDS. Some HCPs in our study have experienced increasing pressure to perform CDS. Some HCPs stated that they more often used intermittent sedation, sometimes resulting in CDS. CONCLUSIONS: This study provides insight into how participating HCPs perceive that their practice of CDS changed over time. The combination of a broader interpretation of refractory suffering by HCPs and a decreased tolerance of suffering at the end of life by patients, their relatives and HCPs, may have led to a lower threshold to start CDS. TRIAL REGISTRATION: The Research Ethics Committee of University Medical Center Utrecht assessed that the study was exempt from ethical review according to Dutch law (Protocol number 19-435/C).

Effective communication in palliative care from the perspectives of patients and relatives: A systematic review.

OBJECTIVES: In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. METHODS: A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. RESULTS: In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. SIGNIFICANCE OF RESULTS: Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

Barriers and facilitators to multidimensional symptom management in palliative care: A focus group study among patient representatives and clinicians.

OBJECTIVES: It is widely acknowledged that co-occurring symptoms in patients with a psychosocial and spiritual aspects should also be considered. However, this multidimensional approach is difficult to integrate into daily practice, especially for generalist clinicians not specialized in palliative care. We aimed to identify the barriers and facilitators to multidimensional symptom management. METHODS: Focus group meetings were conducted with the following stakeholders: (1) patient representatives, (2) generalist community nurses, (3) generalist hospital nurses, (4) general practitioners, (5) generalist hospital physicians, and (6) palliative care specialists. Audiotapes were transcribed verbatim and thematically analyzed. RESULTS: Fifty-one participants (6-12 per group) reported barriers and facilitators with 3 main themes: multidimensional symptom assessment, initiating management of nonphysical problems, and multidisciplinary collaboration. As barriers, generalist clinicians and palliative care specialists reported that generalist clinicians often lack the communication skills to address nonphysical problems and are unaware of available resources for multidimensional symptom management. Palliative care specialists felt that generalist clinicians may be unaware that assessing nonphysical problems is important and focus on pharmacological interventions. Generalist nurses and palliative care specialists indicated that hierarchical difficulties between them and generalist physicians are barriers to multidisciplinary collaboration. Reported facilitators included using symptom assessment scales and standardized questions on nonphysical problems. SIGNIFICANCE OF RESULTS: Generalist clinicians can be supported by improving their communication skills, increasing their awareness of available resources for multidimensional symptom management, and by using a standardized approach to assess all 4 dimensions of palliative care.

Impacts of an advance care planning intervention on close relationships.

OBJECTIVES: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs). METHODS: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken. RESULTS: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients' and PRs' understanding and expectations and affirming their mutual commitment and support. SIGNIFICANCE OF RESULTS: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: A descriptive ethnographic study.

BACKGROUND: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. METHODS: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54-89 years, with mild to moderate intellectual disabilities (IQ <70) and low social-emotional development levels. We combined participant observations and qualitative interviews. RESULTS: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. CONCLUSION: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited.

Prediction Models for Future High-Need High-Cost Healthcare Use: a Systematic Review.

BACKGROUND: In an effort to improve both quality of care and cost-effectiveness, various care-management programmes have been developed for high-need high-cost (HNHC) patients. Early identification of patients at risk of becoming HNHC (i.e. case finding) is crucial to a programme's success. We aim to systematically identify prediction models predicting future HNHC healthcare use in adults, to describe their predictive performance and to assess their applicability. METHODS: Ovid MEDLINE® All, EMBASE, CINAHL, Web of Science and Google Scholar were systematically searched from inception through January 31, 2021. Risk of bias and methodological quality assessment was performed through the Prediction model Risk Of Bias Assessment Tool (PROBAST). RESULTS: Of 5890 studies, 60 studies met inclusion criteria. Within these studies, 313 unique models were presented using a median development cohort size of 20,248 patients (IQR 5601-174,242). Predictors were derived from a combination of data sources, most often claims data (n = 37; 62%) and patient survey data (n = 29; 48%). Most studies (n = 36; 60%) estimated patients' risk to become part of some top percentage of the cost distribution (top-1-20%) within a mean time horizon of 16 months (range 12-60). Five studies (8%) predicted HNHC persistence over multiple years. Model validation was performed in 45 studies (76%). Model performance in terms of both calibration and discrimination was reported in 14 studies (23%). Overall risk of bias was rated as 'high' in 40 studies (67%), mostly due to a 'high' risk of bias in the subdomain 'Analysis' (n = 37; 62%). DISCUSSION: This is the first systematic review (PROSPERO CRD42020164734) of non-proprietary prognostic models predicting HNHC healthcare use. Meta-analysis was not possible due to heterogeneity. Most identified models estimated a patient's risk to incur high healthcare expenditure during the subsequent year. However, case-finding strategies for HNHC care-management programmes are best informed by a model predicting HNHC persistence. Therefore, future studies should not only focus on validating and extending existing models, but also concentrate on clinical usefulness.