Place Of Death For People Research Articles

Influences of Specialist Palliative Care Team Input, Advance Care Planning, Non-Invasive Ventilation and Gastrostomy Status on Unscheduled Hospital Admissions and Place of Death for People with Motor Neuron Disease: A Retrospective Cohort Analysis.

Motor neuron disease is a rapidly progressing neurological condition. People with life-limiting conditions generally prefer to die at home and avoid hospital admissions, with Specialist Palliative Care Team involvement often pivotal. Our aim was to investigate the role of advance care planning, Specialist Palliative Care Team input and other relevant variables on place of death and unscheduled hospital admissions in a Scottish population of people with motor neuron disease. Methods: National CARE-MND audit data, primary and secondary care data, and local Palliative Care records were interrogated. Chi-square, point-biserial correlation and binary logistic regression analysed associations (p < 0.05 statistically significant). Participants (188) were deceased, having a verified motor neuron disease diagnosis between 2015-2017, diagnosis occurring ≥28 days before death. Results: Advance care planning and Specialist Palliative Care Team input of ≥28 days were associated with increased odds of dying outside hospital (BLR:OR 3.937, CI 1.558-9.948, p = 0.004 and OR 2.657, CI 1.135-6.222, p = 0.024 respectively). Non-invasive ventilation decreased the odds of dying outside hospital (BLR:OR 0.311, CI 0.124-0.781, p = 0.013). Having a gastrostomy increased odds of ≥1 admissions in the last year of life (BLR:OR 5.142, CI 1.715-15.417, p = 0.003). Statistical significance was retained with removal of gastrostomy-related complications. Conclusion: Early Specialist Palliative Care input and advance care planning may increase the likelihood of death outside of hospital for persons with motor neuron disease. Further research is warranted into barriers of facilitating death outside of hospital with home non-invasive ventilation use and the association between gastrostomy status and unscheduled admissions.

Place of death in Parkinson's disease and related disorders in England and Wales: post-pandemic trends and implications for care planning.

With growing emphasis on palliative care for neurodegenerative conditions, understanding trends in place of death helps improve quality of end-of-life care for people with Parkinson's disease and related disorders (PDRDs), focusing allocation of resources and training and identifying inequalities. Review national and regional place of death trends for people with PDRD including pre- and post-pandemic trends. Mortality data for England and Wales (March 2018 and July 2022) were analysed with summary statistics and interrupted time series, exploring place of death for those who died with PDRD, with and without coexisting dementia, with reference to all deaths in England and Wales. Of 2,415,566 adult deaths, 56,790 included mention of PDRD. Hospital deaths were most common in people with PDRD (39.17%), followed by care homes (38.84%). People with PDRD were half as likely to die in hospice compared with the general population (2.03 vs 4.94%). Proportion of care home deaths fell significantly after March 2020 (40.6-37%, P= 0.035). Regionally, London was an outlier with a lower proportion of deaths occurring in care homes with a higher proportion of hospital deaths. Place of death for people with PDRD is changing, with more hospice and home deaths. People with PDRD, particularly those with co-existent dementia, are less likely to access inpatient hospice care than the general population. Since the COVID-19 pandemic, the proportion of care home deaths has reduced significantly with an increase in home deaths, with implications for service and resource allocation.

Analysis of an Australian death database of people with intellectual disability living out of the family home: Place of death and associated variables.

This study reports on a five-year data set about the deaths of 599 individuals in New South Wales Australia, who at the time of their death were living in out-of-home care. Analysis aimed to: i) gain a clearer understanding of place of death for people with intellectual disability; and ii) identify and analyse associated variables to investigate how well they predict place of death for this population. Hospital admissions, polypharmacy and living situation were the strongest standalone predictors of place of death. A hospital death was more likely if the target population were subject to polypharmacy, lived in a group home, had a moderate intellectual disability or had GORD. Death, and place of death, is an issue requiring individual consideration. This study has identified some of the variables that need attention when supporting people with intellectual disability to have a good death.

Factors Associated With the Place of Death in Huntington Disease: Analysis of Enroll-HD.

Background: Most people prefer to die at home. Hospice is the standard in end-of-life care for people with Huntington disease (HD), a neurodegenerative genetic disorder that affects people in middle adulthood. Yet, we have little knowledge regarding the place of death for people with HD. Therefore, the current state of knowledge limits HD clinicians' ability to conduct high-quality goals of care conversations. Objectives: We sought to determine the factors associated with the place of death in people with HD. Design: We obtained cross-sectional data from Enroll-HD and included participants with a positive HD mutation of 36 or more CAG repeats. Results: Out of 16,120 participants in the Enroll-HD study, 536 were reported as deceased. The mean age at death was 60. The leading place of death was home (29%), followed by the hospital (23%). The adjusted odds ratio (aOR) of dying at a skilled nursing facility was significantly lower for those partnered (aOR: 0.48, confidence interval [95% CI]: 0.26-0.86). The aOR for dying on hospice compared to home was increased in a person with some college and above (aOR: 2.40, 95% CI: 1.21-4.75). Conclusions: Our data further suggest that models that predict the place of death for serious illnesses do not appear to generalize to HD. The distribution in the places of death within HD was not uniform. Our findings may assist HD clinicians in communication during goals of care conversations.

Patterns and costs of hospital-based cancer care in the last year of life: A national data linkage study in Scotland.

e18732 Background: Approximately thirty thousand people in Scotland are diagnosed with cancer each year, of whom 10,000 live less than one year. Hospital is the most common place of death for people with cancer, despite most expressing a preference for community-based care. There is inadequate understanding of the nature and value of hospital-based care for people with advanced cancer. This study aimed to describe patterns of hospital-based healthcare use and associated costs for cancer decedents in their last year of life. Methods: A population-wide administrative data linkage study of hospital-based healthcare use for cancer decedents aged 60+ at death who died between 2012 and 2017 was conducted in Scotland. Linkage was established between the Scottish Morbidity Record, Scottish Cancer Registry and the National Records of Scotland. Hospital admissions, length of stay (LoS), number and nature of outpatient and day case appointments were extracted. Associated costs were estimated using generalised linear models, adjusted for age, gender, primary cause of death, socioeconomic deprivation status, rural-urban (RU) status and comorbidity. Results: The study population included 85,732 decedents with a cancer diagnosis, for whom 64,553 (75.3%) cancer was the underlying cause of death. Mean age at death was 84 years. The mean number of inpatient stays in the last year of life was 5.88 (SD 5.68), with a mean LoS of 7 days. Mean total 1-year inpatient, outpatient and day-case costs per patient were £10,261, £1,275 and £977 respectively. People who died of haematological cancers had the most hospital admissions (mean 11.8). Admission rates rose sharply in the last month of life and were most common in those who died of haematological and lung cancers. One year adjusted and unadjusted costs decreased with increasing age. Unadjusted costs for the youngest group (60-64) were £15,895, double the cost for those aged 90+. People dying of haematological cancers had the highest hospital-based costs (mean £24,772) followed by those with ovarian cancer (mean £17,556). The largest single contributor to hospital-based costs in the last year of life was unscheduled admissions. Conclusions: People in Scotland in their last year of life with cancer use substantial hospital-based care. Unscheduled admission rates are high, particularly in the last month of life when the value of acute intervention may be uncertain. Further research is needed to examine triggers for hospitalisation and to assess the value of hospital-based care to people living with advanced cancer.

Population-Based Projections of Place of Death for Northern Ireland by 2040

Background There are global challenges in relation to an increasingly older population, rising numbers of deaths and the resulting need for end-of-life care. It is imperative for Health and Social Care to examine where people die and forward plan. Aim To establish the place where people have died 2004-2018 and project future place of death care setting by 2040. Materials and Methods Population-based trend analysis of place of death for people that died in Northern Ireland (2004-2018 from Northern Ireland Statistics and Research Agency) and projections using linear modelling (2019-2040 projections by Office of National Statistics). Results Deaths are projected to increase by 45.9%, from 15,922 in 2018 (of which 36.3% will be aged 85+ years) to 23,231 deaths in 2040 (39.8% aged 85+ years). Between 2004 and 2018, proportions of home and care home (defined as nursing and residential beds) deaths increased (24.5-27% and 16.3-19.4% respectively), while the proportion of hospital deaths declined (51.9-47.6%). If current trends continue, by 2040, deaths within the community (home and care home) will account for between 46.7-55.2% of all deaths. However, if care home capacity is limited at current levels (as of 2018), hospital deaths are projected to account for the largest proportion of deaths by 2040 (51.7%). Discussion Death at an increasing age has implications for end-of-life care provision. This study demonstrates an increasing need for end-oflife care over the next 20-years, particularly within community settings. Projections highlight the need for comprehensive planning to ensure service provision within the community meets the needs of the population.

The impact of population ageing on end-of-life care in Scotland: projections of place of death and recommendations for future service provision

BackgroundGlobal annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation.AimsTo project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends.MethodsPopulation-based trend analysis of place of death for people that died in Scotland (2004–2016) and projections using simple linear modelling (2017–2040); Transparent Expert Consultation to prioritise recommendations in response to projections.ResultsDeaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8–23.4% and 14.5–18.8%), while the proportion of hospital deaths declined (58.0–50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding.ConclusionTo sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.

Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data

BackgroundWith over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death.MethodsIn this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased’s demographic characteristics, place of death, healthcare supply.Resultsi) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in the Netherlands to 90.9% in South Korea. The least common places were hospice facility (3.3%–5.7%), nursing home (0%–17.6%) and home (5.9%–26.3%).iii) Age-standardised relative risks found those with HIV less likely to die at home and more likely to die in hospital compared with cancer patients, and in most countries more likely to die in a nursing home. iv) Multivariate analysis found that men were more likely to die at home in UK, Canada, USA and Mexico; a greater number of hospital beds reduced the likelihood of dying at home in Italy and Mexico; a higher number of GPs was associated with home death in Italy and Mexico.ConclusionsWith increasing comorbidity among people ageing with HIV, it is essential that end-of-life preferences are established and met. Differences in place of death according to country and diagnosis demonstrate the importance of ensuring a “good death” for people with HIV, alongside efforts to optimise treatment.

Changes in place of death among people with dementia in Finland between 1998 and 2013: A register study

IntroductionThe place of death is suggested as a quality indicator for end-of-life care. We investigated how the place of death changed between 1998 and 2013 among people with dementia. MethodsData from the Finnish national health and social care registers were extracted for all people with dementia, who had died at 70 years old during these years (N = 140,034). Descriptive analysis and logistic regression analysis were conducted. ResultsIn 2013, the most common place of death was the primary care hospital (39.8%), followed by nursing home and sheltered housing with 24-hour assistance (20.5%). Dying at home was rare (8.1%). During the study years, dying in the hospital decreased while dying in sheltered housing with 24-hour assistance increased. DiscussionThe place of death for people with dementia has changed from institutions to noninstitutional care facilities. Further research on noninstitutional care facilities' ability to provide high-quality care at the end of life is needed.

Place of death: a question of equity of care

It is important that people approaching the end of life are able to decide where they want to die. It has been found there is a considerable divergence over place of death for people with neurodegenerative diseases and the rest of the population. Those with neurodegenerative diseases should not be treated differently.

New insights into place of death for people with Alzheimer's disease, dementia and senility

Between 2001 and 2009, 15% of all deaths in England had a mention (ie, either an underlying or contributory mortality coding) of Alzheimer's disease, dementia or senility. Over this period...

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

BackgroundEmerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.Methods/DesignMortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.DiscussionCollecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.Trial registrationNational Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.

Influences on place of death in Botswana

There is an emerging body of research aimed at understanding the determinants of place of death, as where people die may influence the quality of their death. However, little is known about place of death for people of Southern Africa. This study describes place of death (home or hospital) and potential influencing factors (cause of death, age, gender, occupation, and district of residence). We collected the death records for years 2005 and 2006 for all adult non-traumatic deaths that occurred in Botswana, described them, and looked for associations using bivariate and multivariate analyses. The evaluable sample consisted of 18,869 death records. Home deaths accounted for 36% of all deaths, and were predominantly listed with "unknown" cause (82.3%). Causes of death for hospital deaths were HIV/AIDS (49.7%), cardiovascular disease (13.8%), and cancer (6.6%). The mean age at the time of all deaths was 53.2 years (SD = 20.9); with 61 years (SD = 22.5) for home deaths and 48.8 years (SD = 18.6) for hospital deaths (p < .001). Logistic regression analysis revealed the following independent predictors of dying at home: unknown cause of death; female gender; >80 years of age; and residing in a city or rural area (p < .05). A major limitation of this study was documentation of cause of death; the majority of people who died at home were listed with an unknown cause of death. This finding impeded the ability of the study to determine whether cause of death influenced dying at home. Future study is needed to determine whether verbal autopsies would increase death-certificate listings of causes of home deaths. These data would help direct end-of-life care for patients in the home.

Place of Death for People with Noncancer and Cancer Illness in South Australia: A Population-Based Survey

A large representative population survey of 9,500 households reports the association between place of death, diagnosis (cancer vs. noncancer), and use of palliative care services of terminally ill South Australians. Thirty-one percent (1,920) indicated that someone close to them had died of a terminal illness in the preceding five years; 18% had died of noncancer illness and 82% of cancer. Sixty-two percent of deceased individuals accessed palliative care services. More patients with cancer than noncancer had had palliative care (65% vs. 48%; p < 0.0001). Compared with cancer patients, those with noncancer illness had died in hospices less frequently (9% vs. 15%; p = 0.0015) and in nursing homes more frequently (15% vs. 5%; p < 0.0001). Similar proportions had died in hospital (60%) and at home (16%-20%). Palliative care service involvement did not reduce institutional deaths, but shifted them from hospital to hospice.