Predictors of At-Home Death for Cancer Patients in Rural Clinics in Japan

Background: The prediction of at-home deaths has become an important topic in rural areas of Japan with an advanced aging society. However, there are no well-established predictors to explain how these factors influence intention. This study aims to investigate the possible predictors of at-home death for cancer patients in rural clinics in Japan. Methods: This is a nationwide cross-sectional survey. A self-administered questionnaire was sent to 493 rural clinics in Japan. The main outcome was the realization of at-home deaths for cancer patients. Results: Among the 264 clinics (54%) that responded to the survey, there were 194 clinics with the realization of at-home death. The use of a clinical pathway (adjusted odds ratio 4.19; 95% confidence interval 1.57–11.19) and the provision of organized palliative care (adjusted odds ratio 19.16; 95% confidence interval 7.56–48.52) were associated with the prediction of at-home death, irrespective of island geography or the number of doctors and nurses. Conclusions: Having a clinical pathway and systematizing palliative care could be important to determine the possibility of at-home deaths for cancer patients in rural clinics in Japan.

End of Life Care in the Home: Supporting and Sustaining Family Carers

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

End of Life Care in the Home: Supporting and Sustaining Family Carers

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

Predictors of the final place of care of patients with advanced cancer receiving integrated home-based palliative care: a retrospective cohort study

Background Meeting patients’ preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients’ preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. Methods This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks’ enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients’ electronic medical records: patients’ and their families’ characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death. Results A total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1–27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1–8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3–24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3–9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4–105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0–9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9–26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2–10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1–46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39). Conclusions Higher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients’ preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.

Symptom Prevalence and Place of Death Preference in Advanced Cancer Patients: Factors Associated With the Achievement of Home Death

Objectives: Achievement of patients’ preferred place of death is recognized as a component of a good death. This study aimed to investigate the symptom burden in advanced cancer patients, achievement of their place of death preferences and factors associated with home death. Methods: In this retrospective review of 287 patient deaths, we examined patients’ symptom prevalence, preferred and actual place of death and achievement of their place of death preferences using descriptive statistics. Associations between patient factors, home death preference and actual home death were further analyzed using multivariate logistic regression. Results: The most prevalent symptoms were weakness, pain and poor appetite, with a mean of 5.77(SD: 2.37) symptoms per patient. The median interval from palliative care referral to death was 21 (IQR: 74) days. Of the 253 patients with documented place of death preference, 132 (52.1%) preferred home death, 111(43.9%) preferred hospital death, 1 (0.4%) preferred to die at a temple and 9(3.6%) expressed no preference. Overall, 221 of 241(91.7%) patients with known actual place of death achieved their preference. Older patients were more likely to prefer home death (OR 1.021; 95% CI 1.004-1.039, p = 0.018) and die at home (OR 1.023; 95% CI 1.005-1.041, p = 0.014). Gender, marital status, cancer diagnosis and symptoms were not associated with preference for or actual home death. Conclusion: Despite a high symptom burden, most patients preferred and achieved a home death. Late palliative care referral and difficult symptom management contributed to failure to fulfill home death preference. Preference for home death should be considered when managing terminally ill geriatric patients.

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.

Who dies where? Estimating the percentage of deaths that occur at home

IntroductionThe majority of low-income and middle-income countries (LMICs) have incomplete death registration systems and so the proportion of deaths that occur at home (ie, home death percentage) is generally unknown. However, home death percentage is important to estimate population-level causes of death from integration of data of deaths at home (verbal autopsies) and in hospitals (medical certification), and to monitor completeness of death notification and verbal autopsy data collection systems. This study proposes a method to estimate home death percentage using data readily available at the national and subnational level.MethodsData on place of death from 152 country-years in 49 countries from 2005 to 2019, predominantly from vital registration systems, were used to model home death percentage standardised for population age and cause distribution. A national-level model was developed using Bayesian model averaging to estimate national, regional and global home death percentage. A subnational-level model was also developed and assessed in populations where alternative data on home death percentage were available.ResultsGlobally, it is estimated that 53.4% (95% uncertainty interval (UI) 50.8%–55.9%) of deaths occur at home, slightly higher (59.7%, 95% UI 56.5%–62.7%) in LMICs, substantially higher in low-income countries (79.5%, 95% UI 77.3%–81.5%) and much lower (27.3%, 95% UI 25.2%–29.6%) in high-income countries. Countries with the highest home death percentage are mostly found in South, East and Southeast Asia and sub-Saharan Africa (above 90% in Ethiopia, Chad and South Sudan). As expected, the national model has smaller error than the subnational model.ConclusionThe study demonstrates substantial diversity in the location of deaths in LMICs and fills a significant gap in knowledge about where people die, given its importance for health systems and policies. The high proportion of deaths in LMICs that occur at home reinforces the need for routine verbal autopsy to determine the causes of death.

Predictors of home death and the quality of end-of-life care at a cancer center in Brazil.

e24004 Background: Early palliative care has shown an improvement in the quality of life of cancer patients by reducing overtreatment at the end of life and improving symptomatic control. Little is known about the quality of death in developing countries. End-of-life cancer care varies widely, and very few centers evaluate it systematically. The aim of the present study is to analyze the impact of follow-up of cancer patients by an outpatient palliative care team (OPCT) on the end-of-life outcomes at a Cancer Center in Brazil. Methods: We retrospectively retrieved data from electronic medical records of cancer patients who were treated at a Cancer Center in Brazil and who died from cancer or associated complications during the year of 2020. They were divided into two groups: OPCT and No-OPCT. OPCT group was followed-up by a multidisciplinary team composed of physician, nurse, physiotherapist, psychologist, nutritionist, social worker, speech-language therapist, and pharmacist, who regularly evaluated cancer patients during their treatments at outpatient setting. During COVID-19 pandemic, some patients were evaluated by telemedicine appointments. No-OPCT group was followed-up by cancer physicians exclusively. We performed univariate comparisons and multivariate analysis by Cox proportional hazards model. p < 0.05 was deemed as statistically significant. Results: A total of 315 patients were included in the study: OPCT (N=122) and No-OPCT (N=193). The groups were well balanced in relation to median age (61yo vs 63yo), gender (women: 51% vs 54%), and TNM stage (stage IV: 69% vs 65%). Gastrointestinal and breast cancers were the most prevalent. The rate of home death was 44% in the OPCT group, compared to 16% in the No-OPCT group (p<0.001). The rate of admission in intensive care unit in the last 30 days of life (ICU30) was 13% vs 10%, respectively (p=0.413). Likewise, the rate of patients treated with chemotherapy in the last 30 days of life (CT30) was 42% vs 51% (p=0.146). In multivariate analysis, follow-up by the OPCT was the strongest independent predictor of home death (Table). In contrast, ICU30 and CT30 were inversely correlated with this outcome. Age, gender, and TNM stage did not have influence on the place of death. Conclusions: Follow-up by an OPCT had a strong positive impact on end-of-life care of cancer patients in a country which does not have Hospice culture. The OPCT was able to offer home death to a greater number of patients, with proximity to caregivers, and respect to their beliefs and values. Our data highlight the importance of early conversations about goals of care, prognostic awareness, and end-of-life preferences, while also reinforcing the need of early referral to a palliative care team.[Table: see text]