Family caregivers' preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home - a grounded theory study.

BACKGROUND: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. METHODS: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. RESULTS: The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation. CONCLUSION: Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.

District nurses experiences in providing terminal care in rural and more urban districts. A qualitative study from the Faroe Islands.

OBJECTIVE: To explore district nurses' experiences in providing terminal care to patients and their families until death in a private home setting. DESIGN, SETTING AND SUBJECTS: Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands. RESULTS: Four themes were identified: 'Challenges in providing terminal care', 'The importance of supporting families', 'Collaborative challenges in terminal care' and 'Differences between rural districts and urban districts'. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock. CONCLUSION: Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient's wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts.

District nurses are key providers of care for people dying in a home care setting.Collaboration with family is essential for making home death possible.Taking care of dying patients is experienced as exhausting but also meaningful.There is a need for an outgoing palliative care team to include all patients regardless of disease.

Impact of home visiting nurses on home death proportion in Japan: A nationwide longitudinal ecological study.

OBJECTIVE: Home visiting nurses contribute to end-of-life home care in an aging society. However, few previous studies reported patient outcomes based on nursing practices. This study aimed to examine the correlation between the number of them and the change in home death proportion. METHODS: We divided the number of home visiting nurses into four categories: absent, shortage, medium, and abundant. This study adopted the interaction term between the nurse categories and year as the major exposure variable, and home death proportion per municipality as the objective variable. We estimated the average marginal effects (AME) as the change in home death proportion from 2015 to 2020. RESULTS: The total number of home visiting nurses was 36,483 in 2015 and 65,868 in 2020. The coefficients of the interaction term were statistically significant in medium and abundant municipalities (Medium: 1.26 (95% CI: 0.49-2.04), Abundant: 2.15 (95% CI: 0.76-3.55)). Increased home death proportion were estimated as AME: 1.56% (95% CI: 0.99-2.13), 1.35% (95% CI: 0.85-1.84), 2.82% (95% CI: 2.30-3.35), and 3.71% (95% CI: 2.44-4.99) in the absent, shortage, medium, and abundant areas, respectively. CONCLUSIONS: To increase the proportion of home deaths, municipalities require a certain number of home visiting nurses.

Exploratory Research on Determinants of Place of Death in a Large-scale Cohort Study: The JPHC Study.

BACKGROUND: The place of death and related factor, such as diseases, symptoms, family burden, and cost, has been examined, but social background and lifestyle were not considered in most studies. Here, we assessed factors that are associated with the place of death using the largest cohort study in Japan. METHODS: A total of 17,781 deaths from the cohort study were assessed. The study database was created from the Japan Public Health Center-based Prospective Study (JPHC Study), in which demographic data were collected from Japanese Vital Statistics. Adjusted odds ratios for home death were calculated using logistic regression. RESULTS: Multivariate analysis adjusted for various factors showed that unmarried status (odds ratio [OR] 2.4; 95% confidence interval [CI], 2.0-2.9), unemployed male (OR 1.3; 95% CI, 1.1-1.5), and high drinking level in male (OR 1.3; 95% CI, 1.1-1.6) were associated with home death. Regarding the cause of death, cardiovascular disease (OR 3.3; 95% CI, 2.9-3.8), cerebrovascular disease (OR 1.9; 95% CI, 1.6-2.2), and external factors (OR 4.1; 95% CI, 3.5-4.8) were significantly associated with home death, compared with cancer. The risk of death at home was significantly higher among unmarried subjects stratified by cause of death (cardiovascular disease: OR 3.2; 95% CI, 2.2-4.7; cerebrovascular disease: OR :5.1; 95% CI, 2.9-9.1; respiratory disease: OR 3.4; 95% CI, 1.6-7.6; and external factors: OR 2.3; 95% CI, 1.4-3.7), but for cancer, the risk of death at home tended to be higher among married participants. CONCLUSION: This study found that various factors are associated with home death using the largest cohort study in Japan. There is a high possibility of home deaths in people with fewer social connections and in those with diseases leading to sudden death.

Caregivers' experiences of end-of-life caregiving to severely ill relatives with cancer dying at home: A qualitative study in the Faroe Islands.

BACKGROUND AND AIM: It is common among people with advanced cancer to wish to die at home, but only a few succeed in doing so. The willingness of family members to care for a person, who wants to die at home, is crucial This qualitative study aimed to provide insight into conditions that make dying at home possible in a small-scale society and to describe family caregivers' experiences of providing end-of-life care in a private home setting. METHODS: Thirteen caregivers were interviewed, their ages varying from 39 to 84 years. A phenomenological approach, inspired by Giorgi, was applied. RESULTS: Two essential structures captured the experience of caring at home until death: 'Managing end-of-life care' and 'meaningfulness in a time of impending death'. It was mainly the family, and especially family members with a healthcare background, together with the district nurses, who supported the caregivers in managing the care of a dying relative at home. Being able to fulfil their relative's wish to die at home and to come closer together as a family made the caregivers feel their efforts meaningful. CONCLUSION: Our findings point to the importance of having access to home care day and night for the caregivers to feel secure during the night-time. As of now, this is only an option in larger towns in the Faroe Islands, which might also be the case in outskirts areas in other countries. Our findings also showed an unmet need for support to ease the mental load on caregivers. Establishing an outgoing interdisciplinary palliative team would help to increase the number of people who want to die at home and succeed in doing so by giving the caregivers emotional and advisory support.

Cancer patients spend more time at home and more often die at home with advance care planning conversations in primary health care: a retrospective observational cohort study.

BACKGROUND: Spending time at home and dying at home is advocated to be a desirable outcome in palliative care (PC). In Norway, home deaths among cancer patients are rare compared to other European countries. Advance care planning (ACP) conversations enable patients to define goals and preferences, reflecting a person's wishes and current medical condition. METHOD: The study included 250 cancer patients in the Romsdal region with or without an ACP conversation in primary health care who died between September 2018 and August 2020. The patients were identified through their contact with the local hospital, cancer outpatient clinic or hospital-based PC team. RESULTS: During the last 90 days of life, patients who had an ACP conversation in primary health care (N=125) were mean 9.8 more days at home, 4.5 less days in nursing home and 5.3 less days in hospital. Having an ACP conversation in primary health care, being male or having a lower age significantly predicted more days at home at the end of life (p< .001). Patients with an ACP conversation in primary health care where significantly more likely to die at home (p< .001) with a four times higher probability (RR=4.5). Contact with the hospital-based PC team was not associated with more days at home or death at home. Patients with contact with the hospital-based PC team were more likely to have an ACP conversation in primary health care. CONCLUSION: Palliative cancer patients with an ACP conversation in primary health care spent more days at home and more frequently died at home. Data suggest it is important that ACP conversations are conducted in primary health care setting.

Preferences for home care to enable home death among adult patients with cancer in late palliative phase - a grounded theory study.

BACKGROUND: The wish to be cared for and to die at home is common among people with end-stage cancer in the western world. However, home deaths are declining in many countries. The aim of this study was to explore the preferences for home care over time to enable home death among adult patients with cancer in the late palliative phase. METHODS: A qualitative method was applied according to grounded theory (Corbin & Strauss, 2008). Data was collected using individual interviews (n = 15) with nine adult patients. One to two follow up interviews were conducted with four patients. Sampling, data collection and constant comparative analysis were undertaken simultaneously. RESULTS: The findings are presented as a conceptual model of patients' preferences for care to enable home death. The core category "Hope and trust to get the care I need to die at home" showed that the preference to die at home seemed stable over time and did not change with deterioration in health status and progression in illness. Five categories were related to the core category. The categories "being in the present", "be safe and in charge" and "be seen and acknowledged" describe the patients' preferences to live a meaningful life until death and be the same person as always. These preferences depended on the categories describing characteristics of healthcare personnel and the organisation of care: "reliable, compassionate and competent healthcare personnel" and "timely, predictive, continuous and adaptive organisation". CONCLUSION: An important preference over time was to be here and now and to live as meaningful a life as possible until death. Moreover, the patients preferred to retain control over their lives, to be autonomous and to be seen as the person they had always been. To achieve this, person-centred care provided by healthcare personnel with competence, skills and enough/ample time were required. In addition, home care needed to be organised in a way that ensured continuity and predictability. Systematic implementation of a person-centred care model and the use of advanced home care plans with continued re-evaluation for patients' preferences of home care were proposed measures to enable home death.

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer.

BACKGROUND: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. METHODS: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis. RESULTS: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. CONCLUSION: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

Healthcare professionals' perspectives of patient and family preferences of patient place of death: a qualitative study.

BACKGROUND: Home death is one of the key performance indicators of the quality of palliative care service delivery. Such a measure has direct implications on everyone involved at the end of life of a dying patient, including a patient's carers and healthcare professionals. There are no studies that focus on the views of the team of integrated inpatient and community palliative care service staff on the issue of preference of place of death of their patients. This study addresses that gap. METHODS: Thirty-eight participants from five disciplines in two South Australian (SA) public hospitals working within a multidisciplinary inpatient and community integrated specialist palliative care service, participated in audio-recorded focus groups and one-on-one interviews. Data were transcribed and thematically analysed. RESULTS: Two major and five minor themes were identified. The first theme focused on the role of healthcare professionals in decisions regarding place of death, and consisted of two minor themes, that healthcare professionals act to: a) mediate conversations between patient and carer; and b) adjust expectations and facilitate informed choice. The second theme, healthcare professionals' perspectives on the preference of place of death, comprised three minor themes, identifying: a) the characteristics of the preferred place of death; b) home as a romanticised place of death; and c) the implications of idealising home death. CONCLUSION: Healthcare professionals support and actively influence the decision-making of patients and family regarding preference of place of death whilst acting to protect the relationship between the patient and their family/carer. Further, according to healthcare professionals, home is neither always the most preferred nor the ideal place for death. Therefore, branding home death as the ideal and hospital death as a failure sets up families/carers to feel guilty if a home death is not achieved and undermines the need for and appropriateness of death in institutionalised settings.

Relationship of place of death with care capacity and accessibility: a multilevel population study of system effects on place of death in Norway.

BACKGROUND: While the majority of deaths in high-income countries currently occur within institutional settings such as hospitals and nursing homes, there is considerable variation in the pattern of place of death. The place of death is known to impact many relevant considerations about death and dying, such as the quality of the dying process, family involvement in care, health services design and health policy, as well as public versus private costs of end-of-life care. The objective of this study was to analyse how the availability and capacity of publicly financed home-based and institutional care resources are related to place of death in Norway. METHODS: This study utilized a dataset covering all deaths in Norway in the years 2003-2011, contrasting three places of death, namely hospital, nursing home and home. The analysis was performed using a multilevel multinomial logistic regression model to estimate the probability of each outcome while considering the hierarchical nature of factors affecting the place of death. The analysis utilized variation in health system variables at the local community and hospital district levels. The analysis was based on data from two public sources: the Norwegian Cause of Death Registry and Statistics Norway. RESULTS: Hospital accessibility, in terms of short travel time and hospital bed capacity, was positively associated with the likelihood of hospital death. Higher capacity of nursing home beds increased the likelihood of nursing home death, and higher capacity of home care increased the likelihood of home death. Contrasting three alternative places of death uncovered a pattern of service interactions, wherein hospital and home care resources together served as an alternative to end-of-life care in nursing homes. CONCLUSIONS: Norway has a low proportion of home deaths compared with other countries. The proportion of home deaths varies between local communities. Increasing the availability of home care services is likely to enable more people to die at home, if that is what they prefer.

Transferring critically ill babies and children home to die from intensive care.

BACKGROUND: A significant proportion of hospital deaths occur in intensive care units (ICU) and often follow a decision to limit or withdraw life-sustaining treatment. Facilitating the preferred choice in place of death for babies/children is increasingly being advocated, although the literature on a home death is often limited to case reports. AIMS AND OBJECTIVES: To examine (a) health care professionals' (HCPs) views and experience of transferring babies/children home to die from intensive care, (b) patient clinical characteristics that HCPs would consider transferring home and (c) barriers to transferring home. DESIGN: A cross-sectional descriptive web-based survey. METHODS: A total of 900 HCPs from paediatric and neonatal ICU across the United Kingdom were invited to participate. RESULTS: A total of 191 (22%) respondents completed the survey; 135 (70.7%) reported being involved in transferring home to die. However, most (58.4%) had just transferred one or two patients in the last 3 years. Overall, respondents held positive views towards transfer, although there was some evidence of divided opinion. Patients identified as unsuitable for transfer included unstable patients (57.6%) and those in need of cardiovascular support (56%). There was statistically significant difference in views between those with and without experience, in that those with experience had more positive views. The most significant barrier was the lack of access to care in the community. CONCLUSIONS: HCPs view the concept of transferring critically ill babies/children home to die positively but have infrequent experience. Views held about transfers are influenced by previous experience. The clinical instability of patients and access to community care are central to decision-making. RELEVANCE TO CLINICAL PRACTICE: A home death for critically ill babies/children is occurring in the United Kingdom but infrequently. Experience of a transfer home positively influences views and increases confidence. Improved multi-organizational collaboration between ICU and community care teams would assist decision-making and facilitation for a transfer home.

Comparing unplanned and potentially planned home deaths: a population-based cross-sectional study.

BACKGROUND: There is little research on number of planned home deaths. We need information about factors associated with home deaths, but also differences between planned and unplanned home deaths to improve end-of-life-care at home and make home deaths a feasible alternative. Our aim was to investigate factors associated with home deaths, estimate number of potentially planned home deaths, and differences in individual characteristics between people with and without a potentially planned home death. METHODS: A cross-sectional study of all decedents in Norway in 2012 and 2013, using data from the Norwegian Cause of Death Registry and National registry for statistics on municipal health and care services. We defined planned home death by an indirect algorithm-based method using domiciliary care and diagnosis. We used logistic regressions models to evaluate factors associated with home death compared with nursing home and hospital; and to compare unplanned home deaths and potentially planned home deaths. RESULTS: Among 80,908 deaths, 12,156 (15.0%) were home deaths. A home death was most frequent in 'Circulatory diseases' and 'Cancer', and associated with male sex, younger age, receiving domiciliary care and living alone. Only 2.3% of home deaths were from 'Dementia'. In total, 41.9% of home deaths and 6.3% of all deaths were potentially planned home deaths. Potentially planned home deaths were associated with higher age, but declined in ages above 80 years for people who had municipal care. Living together with someone was associated with more potentially planned home deaths for people with municipal care. CONCLUSION: There are few home deaths in Norway. Our estimations indicate that even fewer people than anticipated have a potentially planned home death.

Associations Between Home Death and the Use and Type of Care at Home.

Despite wishes for and benefits of home deaths, a discrepancy between preferred and actual location of death persists. Provision of home care may be an effective policy response to support home deaths. Using the population-based mortality follow-back study conducted in Nova Scotia, we investigated the associations between home death and formal care at home and between home death and the type of formal care at home. We found (1) the use of formal care at home at the end of life was associated with home death and (2) the use of formal home support services at home was associated with home death among those whose symptoms were well managed.

Caring at home until death: enabled determination.

PURPOSE: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. METHOD: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. RESULTS: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. CONCLUSIONS: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere.

Family stories of end-of-life cancer care when unable to fulfill a loved one's wish to die at home.

OBJECTIVE: Control over place of death is deemed important, not only in providing a "good death," but also in offering person-centered palliative care. Despite the wish to die at home being endorsed by many, few achieve it. The present study aimed to explore the reasons why this wish is not fulfilled by examining the stories of ten individuals who lost a loved one to cancer. METHOD: We adopted a narrative approach, with stories synthesized to create one metastory depicting plot similarities and differences. RESULTS: Stories were divided into four chapters: (1) the cancer diagnosis, (2) the terminal stage and advancement of death, (3) death itself, and (4) reflections on the whole experience. Additionally, several reasons for cessation of home care were uncovered, including the need to consider children's welfare, exhaustion, and admission of the loved one by professionals due to a medical emergency. Some participants described adverse effects as a result of being unable to continue to support their loved one's wish to remain at home. SIGNIFICANCE OF RESULTS: Reflections upon the accounts are provided with a discussion around potential clinical implications.

Exploring factors and trends in place of death by cancer: a population-based study in Brazil.

Background: The place of death profoundly affects end-of-life care quality, particularly in cancer. Assisting individuals at home enhances support, privacy, and control, reducing healthcare costs. This study seeks to elucidate factors associated and trends in place of death by cancer in Brazil. Methods: Using data obtained from the National Mortality Information System, this study extracted tumour topography, sociodemographic characteristics, and the place of death (outcome classified into hospital or home death) by cancer in Brazil from 2002 to 2021. Findings: The analysis included 3,677,415 cases, with 82.3% of deaths occurring in hospitals and 17.7% at home. Most participants were male (53.1%), had gastrointestinal tumours (32.2%), and resided in the Southeastern region (48.7%). Home deaths were more frequent in the Northeastern (30.2%) and Northern (24.8%) regions compared to the Southern (17.1%) and Southeastern (12.2%) regions. A strong inverse correlation was found between home deaths and the Human Development Index of the region. Over the years, there was a reduction in home deaths, followed by a recent increase. Individuals with no formal education, indigenous individuals, and patients from the North, Northeast, and Central-West regions had higher rates of home deaths, while patients with haematological malignancies had lower rates compared to those with gastrointestinal tumours. Interpretation: The minority of deaths by cancer in Brazil occur at home, with distinct trends over time. Home death was associated with regional, racial and educational level differences. Funding: No funding.

Evaluation of an end-of-life teaching programme for unregistered domiciliary care staff.

BACKGROUND: With increased focus on people being supported to die at home, and increased numbers of people predicted to die in the coming years in the UK, it is recognised that domiciliary carers need to be trained and supported to give end-of-life care. Recent reports suggest that this is not happening. AIM: To introduce and evaluate a training programme to upskill unregulated domiciliary care agency staff and integrate them into the palliative care teams, supporting registered nurses in caring for end-of-life patients. METHOD: A training course was devised and implemented. This report covers the first 3 years of running the course, and evaluates the difference that it made to the first 210 recipients' ability and confidence in delivering end-of-life care, using a mixed-methods approach. RESULTS: Pre- and post-course confidence questionnaires, evaluations, post-course testimonials, and managers' comments all identified improvements in knowledge, skills and attitudes following training. Agency policies were re-written with up-to-date guidance on how to respond to death in the community. CONCLUSION: This article demonstrates that this model is effective in achieving its aims.

Do advanced cancer patients and their caregivers agree on preferred place of patient's death?-a prospective cohort study of patient-caregiver dyads.

BACKGROUND: Greater patient-caregiver concordance for preferred place of death can increase the chances of patients dying at their preferred place, thus improving quality of life at end-of-life (EOL). We aimed to assess changes in and predictors of patient-caregiver concordance in preference for home death at EOL during the last 3 years of life of patients with advanced cancer. METHODS: We used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study of patients with stage IV solid cancer. We interviewed patients and their caregivers every 4 months to assess their preference for home death (for patient), and patient (symptom burden, inpatient usage, financial difficulties) and caregiver (psychosocial distress, spiritual wellbeing, competency and perceived lack of family support) characteristics. We used data from patients' last 3 years of life. We used multivariable multinomial logistic regressions to predict dyad concordance for preference for home death. RESULTS: A total of 227 patient-caregiver dyads were analyzed. More than half of the patient-caregiver dyads observations were concordant in their preference for home death (54%). Concordance for home death declined closer to death (from 68% to 44%). Concordant dyads who preferred home death were less likely to include older patients [relative risk ratio, 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing home, unsure or others) were more likely to include patients with greater symptom burden (1.08; P=0.007) and with spousal caregivers (2.59; P=0.050), and less likely to include caregivers with greater psychosocial distress (0.90; P=0.003) and higher spiritual wellbeing (0.92; P=0.007). CONCLUSIONS: This study provides evidence of the dynamic changes in preference for home death among patient-caregiver dyads during last 3 years of patients' life. Understanding the EOL needs of older patients, optimizing home-based symptom control and better caregiver support are recommended to increase likelihood of dyad concordance for home death.

The determinants of actual place of death among noncancer patients with end-stage chronic health conditions: a scoping review.

A home is a preferred place of death by most people. Nurses play a key role in supporting end-of-life home care, yet less is known about the factors that determine home as a place of death. This scoping review describes the percentage of actual places of death and determines social factors related to home as the place of death among noncancer patients with end-stage chronic health conditions. Inclusion criteria included (1) noncancer chronic illness conditions, (2) outcomes of place of death, and (3) factors that determine home as a place of death. Sources of evidence included PubMed, CINAHL, and Web of Science databases, which were searched in May 2022, and additional searches from May 2022 to November 2023.The JBI scoping review guide (2020) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review extension were used. Twenty-eight studies were included in this analysis. The range of percentages is varied within the same place of death among the sample. Two major constructs that determine a home as a place of death were identified: preceding factors and social capital. The results suggest that the place of death among noncancer patients with end-stage chronic health conditions should be continued to be understood. Two constructs determined home as a place of death and are considered as a fundamental to increasing equal accessibility in the initiation of palliative care services to promote home death and meet end-of-life care goals.