The changing landscape of both causes and locations of death in a regional HIV population 2010-2021.

BACKGROUND: Although HIV-related deaths among people with HIV have dramatically decreased, deaths from other medical conditions and non-medical events have increased. The location of death among people with HIV remains underreported. OBJECTIVES: We reviewed the deaths, causes of death, and reported location of death (i.e. within or outside of medical settings) of all people with HIV with the Southern Alberta Cohort, Calgary, Canada, between 1 January 2010 and 1 January 2022. METHODS: This was a retrospective longitudinal cohort study reviewing all deaths within a comprehensive geographically defined HIV cohort over 11 years. RESULTS: Deaths from HIV-related causes decreased from 52% of all deaths in 2010 to 14% in 2021. In 2021, non-HIV medical deaths increased from 38% to 44%, and non-medical deaths (e.g. violence, suicide, drug overdose) increased from 0.5% to 39%. Of non-medical deaths, 67% resulted from substance use/overdose. Overall, deaths in any medical setting decreased from 91% in 2010 to 39% in 2021; 61% of all deaths occurred in a medical setting (e.g. hospital/emergency department or supported/long-term/hospice care), 27% in a residence, and 9% in the community. CONCLUSION: The shifting causes of death (i.e. fewer HIV-related deaths, more overdose deaths) and location of death (i.e. fewer in medical settings, more at home/in the community) requires close monitoring so future resources can be matched to predicted patient needs.

Location of death and hospice use in children with cancer varies by type of health insurance.

BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a nationally representative dataset with Medicaid and commercial claims to conduct a retrospective observational study of children with cancer who died between 2011 and 2017 at age ≤21 years. We examined rates of (a) home death, (b) hospice utilization, (c) and medically intense interventions in the last 30 days (e.g., intubation). RESULTS: Of the 1492 children in the cohort, 44% had Medicaid and 56% commercial insurance; 71% carried a solid tumor diagnosis, and 37% were between the ages of 15 and 21 years at the time of death. Forty percent died at home; children with Medicaid were less likely to die at home (relative risk [RR] = 0.82, 95% confidence interval [CI]: 0.73-0.92; reference: commercial). Forty-five percent enrolled in hospice, for a median of 2 days. Hospice enrollment rates did not vary with insurance. However, children with Medicaid spent less time enrolled (incidence rate ratio [IRR] = 0.22, 95% CI: 0.17-0.27). Among children with Medicaid, Black children were less likely to die at home (RR = 0.69, 95% CI: 0.52-0.92) and enroll on hospice (RR = 0.71, 95% CI: 0.55-0.91) than non-Hispanic White children. Medically intense interventions did not vary with insurance or race. CONCLUSION: Only 40% of children with cancer die at home, and the duration of hospice enrollment is short. EOL care varies significantly with insurance. It is imperative that we determine if these patterns and disparities represent EOL preferences, provider biases, or differences in quality or availability of hospice.

Trends in Location of Death in Patients With Aortic Aneurysm and Dissection.

Aortic dissections and aneurysms (ADA) are associated with significant morbidity and mortality, and location of death for these patients is important in determining impact on end of life care. We analyzed the Centers for Disease Control and Prevention Wide-ranging Online Data for Epidemiologic Research database. Black and Hispanic backgrounds had decreased odds of dying at home from ADA. Married or educated individuals tended to die at home at a higher rate than unmarried individuals. Overall, we have shown place of death in individuals with ADA is different among individuals of different demographics.

Location of Death in Developed Countries: Are Hospitals a Primary Place of Death and Dying Now?

Hospitals used to be a common site of death and dying. This scoping project sought published and unpublished information on current hospital death rates in developed countries. In total, death place information was gained from 21 countries, with the hospital death rate varying considerably from 23.9% in the Netherlands to 68.3% in Japan. This major difference is discussed, as well as the problem that death place information does not appear to be routinely collected or reported on in many developed countries. Without this information, efforts to ensure high quality end-of-life (EOL) care and good deaths are hampered.

Factors Associated With the Location of Expected Pediatric Deaths in the Palliative Care Context.

Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper reviewed which factors were associated with pediatric LOD and further considered some emerging factors that should are important to better facilitate integrative planning. Three overarching areas of consideration related to pediatric LOD planning were identified including health service factors, familial factors and patient factors. Multiple sub-factor considerations are presented. Further, the paper presents a conceptual model of the factors found to be related to pediatric LOD planning. The limitations that exist with rigorously and empirically studying pediatric LOD preferences are apparent from the dearth of knowledge seen in the field. However, future studies should continue to examine such factors more closely to better understand the nuanced implications.

Race, ethnicity, and goal-concordance of end-of-life palliative care in pediatric oncology.

BACKGROUND: Racial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal-concordant or disparities. The authors sought to explore patterns of pediatric palliative care (PPC) and health care utilization in pediatric oncology patients receiving subspecialty palliative care at the end-of-life (last 6 months) and to examine goal-concordance of location of death in a subset of these patients. METHODS: This was a retrospective cohort study of pediatric oncology patients receiving subspecialty palliative care at a single large tertiary care center who died between January 2013 and March 2017. RESULTS: A total of 115 patients including 71 White, non-Hispanic patients and 44 non-White patients (including 12 Black patients and 21 Hispanic patients) were included in the analytic cohort. There were no significant differences in oncologic diagnosis, cause of death, or health care utilization in the last 6 months of life. White and non-White patients had similar PPC utilization including time from initial consult to death and median number of PPC encounters. Non-White patients were significantly more likely to die in the hospital compared to White patients (68% vs 46%, P = .03). Analysis of a subcohort with documented preferences (n = 45) revealed that 91% of White patients and 93% of non-White patients died in their preferred location of death. CONCLUSIONS: Although non-White children with cancer were more likely to die in the hospital, this difference was goal-concordant in our cohort. Subspecialty PPC access may contribute to the achievement of goal-concordant EOL care.

Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients.

BACKGROUND: An important aspect of end-of-life care is the place of death. A majority of cancer patients prefer home death to hospital death. At the same time, the actual location of death is often against patient's last-known wish. The aim of this study was to analyze whether socioeconomic factors influence if Swedish palliative cancer patients die at home or at a hospital. There is no previous study on location of death encompassing several years in Swedish cancer patients. METHODS: Data was collected from the Swedish Register of Palliative Care for patients diagnosed with brain tumor, lung, colorectal, prostate or breast cancer recorded between 2011 and 2014. The data was linked to the Swedish Cancer Register, the Cause of Death Register and the Longitudinal Integration Database for health-insurance and labor-market studies. A total of 8990 patients were included. RESULTS: We found that marital status was the factor that seemed to affect the place of death. Lack of a partner, compared to being married, was associated with a higher likelihood of dying at a hospital. CONCLUSION: Our findings are in line with similar earlier studies encompassing only 1 year and based on patients in other countries. Whether inequalities at least partly explain the differences remains to be investigated. Patients dying of cancer in Sweden, who do not have a life partner, may not have the option of dying at home due to lack of informal support. Perhaps the need of extensive community support services to enable home death have to improve, and further studies are warranted to answer this question.

Location of traumatic brain injury-related deaths: epidemiological analysis of 11 European countries.

Background: Understanding the factors related to traumatic brain injury (TBI)-related mortality is important in obtaining a complete picture of the predictors and burden of injury-related deaths. Objective: To analyze deaths due to TBI occurring inside versus outside hospitals. Methods: Data were obtained by requests to the representatives of national statistical offices and health administration institutions for one reported calendar year (2014 or the nearest available year). Results: A total of 4513 cases of TBI-related deaths were identified. Of these, 2045 (45%) occurred outside and 2468 (55%) in hospitals. The pooled out-of-hospital age-adjusted mortality rate was 5.5 (95% CI = 4.8-6.3), and in-hospital age-adjusted rate was 6.6 (95% CI = 5.2-7.9) per 100 000 people. Outside (25%) or inside (53%) hospitals, the most common cause of TBI-related deaths was falls. The age group of 15-24 years and traffic-related, suicide-related, and violence-related mechanisms were the most significant factors associated with deaths occurring outside hospitals. Conclusions: The results of this study may be of use in planning and allocation of public health resources, and identification of the situations most commonly associated with fatalities in different locations.

Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service.

BACKGROUND: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored. MATERIALS AND METHODS: A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death. RESULTS: Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02; p = .002), hematologic malignancy (OR, 7.42; p < .0001), history of hematopoietic stem cell transplant (OR, 4.52; p < .0001), total number of PICU hospitalizations (OR, 1.98; p < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96; p = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7; p < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02; p < .0001) and documentation of advance directives at the time of death (OR, 0.37; p = .033). CONCLUSION: Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families. IMPLICATIONS FOR PRACTICE: Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.

All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014.

AIM: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. METHODS: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. RESULTS: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. CONCLUSION: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.

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.

Parents' Experiences and Wishes at End of Life in Children with Spinal Muscular Atrophy Types I and II.

OBJECTIVE: To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy. STUDY DESIGN: A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were born between 2000 and 2010 and later diagnosed with spinal muscular atrophy type I or II (n = 48). The questions used in this study covered location of death (LoD), support from health care staff, and parents' wishes and concerns about their child's end-of-life care. RESULTS: One-half of those who had wishes about LoD (16/32) wanted their child to die at home, rather than at the hospital. All of those who wanted the child to die at the hospital had their wishes fulfilled. Among those who wanted the child to die at home, 10 of 16 got their wish. Among parents who talked with a physician about how they wanted their child to pass away (n = 26), all but 2 had their wishes fulfilled. Thirty-six parents (75%) reported that their child had siblings: 12 reported that the sibling was too young for professional psychological support, and only 4 of the remaining 24 siblings received such support after the death of their brother or sister. CONCLUSIONS: Parents' communication with the physician about their wishes and concerns regarding their child's end-of-life care and preferred LoD contributed to their wishes being fulfilled. The wish of hospital death was fulfilled more often than the wish of home deaths. A vast majority of siblings did not receive psychological support after death of their brother or sister.

Factors associated with hospital deaths in the oldest old: a cross-sectional study.

AIMS/OBJECTIVES: to study associations between the likelihood of hospital death with patient demographics, cause of death and co-morbidities for people aged ≥85 at death who have been previously admitted (within 12 months of death) to hospital. METHODS: a cross-sectional study, using death registration data and hospital episode statistics, for 671,178 England residents who had been admitted to hospital during the 12 months before death and were aged 85 or over at death during 2008-12. The outcome variable was the likelihood of dying in hospital. Covariates included gender, age, social deprivation, care home residence, cause of death and co-morbidity. Potential associations were explored by multivariable regression analysis. RESULTS: sixty-two per cent of the sample died in hospital. The likelihood of dying in hospital varies significantly with age, cause of death, deprivation, number of emergency hospital and co-morbidities. People aged over 90 at the time of death are less likely to die in hospital than those aged 85-89 [odds ratio (OR) for aged 90-94, 0.99; 95% confidence interval (CI) 0.98-1.00, OR for aged 95 and over, 0.91; 95% CI: 0.89-0.92]. People who are care home residents at the time of death are significantly less likely to die in hospital (OR 0.34; 95% CI: 0.34-0.35). Having a mention of dementia on the death certificate was significantly associated with a reduction in the likelihood of dying in hospital (OR 0.32; 95% CI: 0.31-0.32). CONCLUSIONS: the likelihood of an older person dying in hospital is significantly associated with a number of socio-demographic factors, such as age and level of deprivation. Care home residence is significantly associated with a reduction in likelihood of hospital death.

International comparison of death place for suicide; a population-level eight country death certificate study.

PURPOSE: The places of death for people who died of suicide were compared across eight countries and socio-demographic factors associated with home suicide deaths identified. METHODS: Death certificate data were analyzed; using multivariable binary logistic regression to determine associations. RESULTS: National suicide death rates ranged from 1.4 % (Mexico) to 6.4 % (South Korea). The proportion of suicide deaths occurring at home was high, ranging from 29.9 % (South Korea) to 65.8 % (Belgium). Being older, female, widowed/separated, highly educated and living in an urban area were risk factors for home suicide. CONCLUSIONS: Home suicide deaths need specific attention in prevention programs.

Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy.

BACKGROUND: Home is often cited as preferred place of death in the United Kingdom and elsewhere. This position, however, usually relies on data concerning adults and not evidence about children. The latter data are scant, primarily retrospective and from parents. AIM: To review the literature on preference for place of death for children and young people with life-limiting or life-threatening illnesses. DESIGN AND DATA SOURCES: The databases MEDLINE, CINAHL and EMBASE were searched from 2004 to 2012, as well as bibliography, key author and grey literature searches. Policy documents, empirical, theoretical and peer-reviewed studies and conference abstracts were included. Articles were assessed for study quality. RESULTS: Nine studies were included from five countries. Six reported a majority of parents (only one study interviewed adolescents) expressing preference for death at home. Other studies differed significantly in their findings; one reporting 35.1% and another 0% preferring death at home. Some parents did not express a preference. Six of the studies included only parents of children who died from cancer while being treated at tertiary centres that offered palliative care services. Such results cannot be generalised to the population of all life-limiting and life-threatening illnesses. Furthermore, the methods of the studies reviewed failed to accommodate the full range and dynamic character of preference. CONCLUSION: The evidence base for current policies that stress the need to increase home death rates for children and young people with life-limiting and life-threatening conditions is inadequate. Further rigorous research should collect data from parents, children and siblings.

Racial and ethnic disparities in end-of-life care for patients with oesophageal cancer: death trends over time.

Background: Given significant morbidity and mortality associated with oesophageal cancer, supportive, high-quality end-of-life care is critical. Most patients with advanced cancer prefer to die at home, but incongruence between preferred and actual place of death is common. Here, we examined trends and disparities in location of death among patients with oesophageal cancer. Methods: Using the Centers for Disease Control and Prevention Wide-Range Online Data for Epidemiologic Research database, we utilized multinomial logistic regression to assess associations between sociodemographic characteristics and location of death for patients with oesophageal cancer (n = 237,063). Additionally, we utilized linear regression models to evaluate the significance of changes in location of death trends over time and disparities in the relative change in location of death trends across sociodemographic groups. Findings: From 2003 to 2019, there was a decrease of deaths in hospitals, nursing homes, and outpatient medical facilities/emergency departments and an increase of deaths at home and in hospice. Relative to White decedents, Black and Asian decedents were less likely to die at home (relative risk ratio (RRR): 0.58 [95% confidence interval (CI): 0.56-0.60], RRR: 0.57 [95% CI: 0.53-0.61]) and in hospice (RRR: 0.67 [95% CI: 0.64-0.71], RRR: 0.49 [95% CI: 0.43-0.55]) when compared to the hospital. Similar disparities were noted for American Indian and Alaska Native (AIAN) decedents. These disparities persisted even upon stratifying by the number of listed causes of death, a proxy for severity of illness. Time trend analysis indicated that increases in deaths in hospice over time occurred at a slower rate for AIAN and Asian decedents relative to White decedents. Interpretation: 2 in 5 patients with oesophageal cancer die at home, with an increasing proportion dying at home and in hospice-in line with general patient preferences. However, location of death disparities have largely persisted over time among racial and ethnic minority groups. Our findings suggest the importance of improving access to advance care planning and delivering tailored, person-centred interventions. Funding: None.

Trauma deaths of hospitalized patients in Abu Dhabi Emirate: a retrospective descriptive study.

AIM: To study the epidemiology and pattern of trauma-related deaths of hospitalized patients in Abu Dhabi Emirate, United Arab Emirates, in order to improve trauma management and injury prevention. METHODS: The Abu Dhabi Trauma Registry prospectively collects data of all hospitalized trauma patients from seven major trauma centres in Abu Dhabi Emirate. We studied all patients who died on arrival or after admission to these hospitals from January 2014 to December 2019. RESULTS: There were 453 deaths constituting 13.5% of all trauma deaths in the Abu Dhabi Emirate. The median (IQR) age of the patients was 33 (25-45) years, and 82% were males. 85% of the deaths occurred in the emergency department (ED) and the intensive care unit (ICU). Motor vehicle collision (63.8%) was the leading cause of death. 45.5% of the patients had head injury. Two of the seven hospitals admitted around 50% of all patients but accounted for only 25.8% of the total deaths (p < 0.001). Those who died in the ward (7%) were significantly older, median (IQR) age: of 65.5 (31.75-82.25) years, (p < 0.001), 34.4% of them were females (p = 0.09). The median (IQR) GCS of those who died in the ward was 15 (5.75-15) compared with 3 (3-3) for those who died in ED and ICU (P < 0.001). CONCLUSIONS: Death from trauma predominantly affects young males with motor traffic collision as the leading cause. Over 85% of in-hospital deaths occur in the ICU and ED, mainly from head injuries. Injury prevention of traffic collisions through enforcement of law and improved hospital care in the ED and ICU will reduce trauma death.

Determinants of Location of Death: A Secondary Analysis Utilizing Multinomial Logistic Regression.

STATEMENT OF PROBLEM: A discrepancy exists between where people would like to die and what actually occurs. More research about the factors influencing the location of death is required. Sources of Data and Research Design: Multinomial logistic regression was used to examine a sample taken from the fourth round of data collection performed by the National Health and Aging Trends Study conducted in 2014. Conclusions Reached: Census location, age, dementia, and use of hospice were found to have a statistically significant (P < .05) influence on the location of death (P = .000). The results suggest that the use of hospice increased the odds of dying at home (OR = 17.467, CI = 7.43-41.063) and in a nursing home (OR = 34.334, CI = 12.444-94.727) as compared to dying in the hospital. Further research is required on the topic of geographic location and place of death.

"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home.

Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limiting conditions. There is very limited research on utilization of an inpatient hospice facility for end-of-life care if a pediatric-specific facility is available. We examined changes in family utilization of inpatient hospice services with the availability of an inpatient pediatric hospice facility (PHF). Methods: We conducted a retrospective cohort study with data collected on location of end-of-life care and death five years prior to and five years following the opening of a PHF that receives referrals from a large children s hospital in United States. Two data sources from the hospice organization were used: (1) a dataset on origins and outcomes of referrals to pediatric inpatient hospice care and (2) a dataset on location of death for all pediatric patients who had any contact with the hospice system. Chi-square analyses were conducted to assess the associations between the PHF opening and referral outcomes and location of death. Results: Significant results were found with respect to both referral outcomes and location of death. Engagement in inpatient hospice care increased between 2- and 10-fold following the opening of the inpatient PHF. The percent of patients who died in an inpatient hospice unit also increased significantly with the opening of the pediatric facility. Discussion: Results of this study show that providers are more likely to refer, and families are more likely to use inpatient hospice services when pediatric facilities are available. These results are important for establishing an evidence base in support for increasing access to PHFs.