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1.
Med J Islam Repub Iran ; 38: 42, 2024.
Article in English | MEDLINE | ID: mdl-39399598

ABSTRACT

Background: Death in the place that the patient has selected and feels comfortable remaining in for the remainder of their life is one of the main objectives of palliative care for terminally ill cancer patients. Nevertheless, this problem is constantly disregarded. The goal of the present study was to look at variables that affected cancer patients' decisions about their place of death. Methods: A descriptive cross-sectional study was conducted from May to August 2018. Using a continuous sampling method, 631 patients who had passed away between 2011 and 2017 were selected among the patients with a history of cancer and hospitalization at the Firoozgar Hospital in Tehran. A self-made 3-section questionnaire with 21 questions was completed by phone calls made to the families who confirmed their patients' deaths due to cancer. Data were managed by SPSS software Version 13, and descriptive statistics were used in data analysis. Results: Based on the results, among 631 deceased patients, only 157 (24.9%) chose their place of death, and 474 (75.1%) had not spoken about it during their lifetime. Among the examined variables, age, sex, education, insurance status, duration of disease, activities of daily living, awareness of disease progression, and receiving home care had a significant association with this choice in people who died of cancer. Conclusion: Despite the importance of the choice of place of death by the patient in the final days of life, the possibility of having an option is not provided for most cancer patients. Patients who understand how their disease is progressing at this point are probably going to want to select where they pass away. Consequently, the healthcare system must be ready to grant cancer patients the option to choose their final resting place and ensure a comfortable and respectable passing. Future research can be built upon the results of this study.

2.
J Am Med Dir Assoc ; : 105304, 2024 Oct 11.
Article in English | MEDLINE | ID: mdl-39401748

ABSTRACT

OBJECTIVES: To describe trends and identify factors associated with place of death among individuals with Huntington's disease (HD). DESIGN: Retrospective cohort of deceased individuals with HD from the Centers for Disease Control and Prevention's National Center for Health Statistics. SETTING AND PARTICIPANTS: A total of 13,350 individuals with HD who died in the United States between 2009 and 2019. METHODS: We analyzed place of death, categorized as long-term care (LTC) facility, home, hospital, hospice facility, and other locations. Trends in the places of death from 2009 to 2019 were assessed using linear regression models. Multivariate logistic regression models were used to identify sociodemographic factors associated with place of death. RESULTS: From 2009 to 2019, the greatest proportion of deaths occurred in LTC facilities (48.4%). There was a significantly decreasing trend in the proportion of deaths occurring in LTC facilities (53.5%-43.9%, P < .001). A greater proportion of deaths in rural areas occurred in LTC facilities compared with all other locations (P < .001 for all comparisons). In the multivariate model, age younger than 44 years, Black race, Hispanic ethnicity, some college education or greater, and being married were associated with significantly lower odds of dying in a LTC facility compared with home. CONCLUSIONS AND IMPLICATIONS: Despite a decreasing trend, LTC facilities remain a cornerstone of support for individuals with HD, particularly in rural areas. These results suggest multiple avenues for research to improve accessibility and quality of care for individuals with late stages of HD. Future studies are needed to further understand the impact of rurality and lack of support in the home on the accessibility and quality of LTC and hospice care for individuals with HD. These results may also help inform interventions focused on training and staff education within LTC and hospice facilities to better manage HD progression and symptoms.

3.
Indian J Palliat Care ; 30(3): 268-274, 2024.
Article in English | MEDLINE | ID: mdl-39371497

ABSTRACT

Objectives: Achieving a 'good death' is one of the important goals of palliative care. Providing goal-concordant care and an environment tailored to the patient's preferences can contribute to a 'good death'. However, the concordance rate between the preferred and actual places of death among advanced cancer patients in Japan is less explored. This study aimed to identify the concordance between patients' preferred and actual places of death and the associated factors among patients with advanced cancer in Japan. Materials and Methods: Patients with advanced cancer who underwent chemotherapy at Tohoku University Hospital between January 2015 and January 2016 were enrolled and followed up for 5 years. The enrolled patients were asked about their preference for their place of death. The response options were: "Own home," "General ward" and "Palliative care unit (PCU)." We compared the actual place of death with the patient's preference through a follow-up review of the medical records. Results: A total of 157 patients with advanced cancer were enrolled between January 2015 and January 2016. Of these patients, 22.9% (11/48) died at home according to their preference, 64.0% (16/25) in the general ward and 37.9% (11/29) in the PCU. Only thirty-seven (37.3%) patients died where they wanted, based on the comparison between patients' preferences and actual places of death. Conclusion: The concordance rate between the preferred and actual places of death is not high in Japan. Improving concordance between patients' preferences and actual places of death has the potential to improve end-of-life care.

4.
J Palliat Care ; : 8258597241275355, 2024 Sep 30.
Article in English | MEDLINE | ID: mdl-39344388

ABSTRACT

Objectives: (1) To describe ACPT implementation frequency in practice. (2) To assess associations of ACPT documentation with a) hospital care consumption, including systemic anti-tumor treatment in the last month(s) of life, and b) match between preferred and actual place of death, among oncology patients. Methods: A retrospective cohort study was performed. Data concerning ACPT documentation, hospital care consumption, and preferred and actual place of death were extracted from electronic patient records. Patients with completely documented ACPT (cACPT) and no ACPT were compared using multivariable logistic regression analyses. Results: ACPT was implemented in 64.5% (n = 793) of all deceased patients (n = 1230). In 17.6% (n = 216), preferred place of care or death was documented at least three months before death (cACPT). A cACPT was not associated with systemic anti-tumor treatment (Adjusted OR (AOR): 0.976; 95% CI: 0.642-1.483), but patients with cACPT had fewer diagnostic tests (AOR: 0.518; CI: 0.298-0.903) and less contacts with hospital disciplines (AOR: 0.545; CI: 0.338-0.877). In patients with cACPT, a match between preferred and actual place of death was found for 83% of the patients for whom the relevant information was available (n = 117/n = 141). In patients without ACPT, this information was mostly missing. Conclusion: Although the ACPT was implemented in two thirds of patients, timely documentation of preferred place of care or death is often missing. Yet, timely documentation of these preferences may promote out-hospital-death and save hospital care consumption.

5.
Front Psychol ; 15: 1382272, 2024.
Article in English | MEDLINE | ID: mdl-39319072

ABSTRACT

Background: Dying in a preferred place is important for a good death. Currently, no study has evaluated the extent to which the preferences for the place of death (PoD) are met among terminal cancer patients in China. This study examined the congruence between the preferred and actual PoD and its predictors among terminal cancer patients in China. Methods: Between 2015 and 2023, 845 terminal cancer patients from four tertiary hospitals in Wuhan, China, were enrolled and followed till death. Face-to-face surveys at baseline and telephone-based interviews in the last month of patients' lives were combined to learn patients' preferred PoD. Data on patients' actual PoD were collected from families within 1 month after patients' death. Results: Of the 410 patients who died, 62.7% of them died in hospitals. The agreement between patients' preferred and actual PoD was fair (κ = 0.221). The congruence between patients' preferred and actual PoD was 63.0, 36.6%, and 0 for hospital death, home death, and hospice facility/nursing home death separately. Patients were more likely to die in their preferred places if their preferred place and family caregivers' belief of patients' preferred PoD was congruent (odds ratio [OR] = 6.464, p = 0.001), or if caregivers had a medically related occupation (OR = 4.577, p = 0.003); if patients were hospitalized at least twice in the last month of life (OR = 0.422, p = 0.000), or the quality of care received by patients in the last 48 h was rated good by the families (OR = 0.373, p = 0.011), patients were less likely to die in their preferred places. Conclusion: The congruence between patients' preferred and actual PoD was fair. Advance care planning (ACP) needs to be popularized in China, and the quality of care in hospice facilities and nursing homes should be improved. The necessary policy support for hospice care should be made to respect cancer patients' end-of-life (EoL) care preferences in China.

6.
Am J Hosp Palliat Care ; : 10499091241283399, 2024 Sep 23.
Article in English | MEDLINE | ID: mdl-39311481

ABSTRACT

BACKGROUND: There is an increasing need to integrate Advance Care Planning (ACP) in nursing homes (NH) due to rapid aging and burden of multimorbidity. This study examines differences in the characteristics and outcomes of NH residents enrolled in a palliative care programme who have completed ACP and those who did not. METHOD: We conducted a retrospective cohort analysis of 294 deceased residents enrolled into a palliative programme from 8 nursing homes in Singapore. Comparison was made between residents who completed an ACP and those who did not. Treatment preferences and place of death preferences were examined and concordance to these preferences were analyzed. RESULTS: ACP completion rate was 81% in the cohort. Residents opting for comfort measures only had high concordance (92%) for their preferred place of death (PPOD). However, residents opting for limited intervention showed lower PPOD concordance (77%), with many dying in hospitals despite a preference for dying in the NH. Residents with ACP were significantly more likely to die in NH (68.2% vs. 36.4%) and had a longer median programme enrolment duration (131 vs. 53 days) compared to those who did not complete ACP. CONCLUSION: Despite high ACP completion rate in our cohort, challenges remain in aligning treatment preferences with actual care provided, particularly for residents opting for limited intervention. Future efforts should focus on increasing ACP participation and addressing systemic barriers to improve end-of-life care outcomes for NH residents.

7.
Palliat Med ; 38(9): 896-922, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39092850

ABSTRACT

BACKGROUND: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. AIM: To identify factors influencing where people with advanced dementia die. DESIGN AND DATA SOURCES: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. RESULTS: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. CONCLUSION: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.


Subject(s)
Dementia , Humans , Dementia/mortality , Aged, 80 and over , Male , Terminal Care , Female , Aged , Attitude to Death
8.
J Geriatr Oncol ; : 102048, 2024 Aug 30.
Article in English | MEDLINE | ID: mdl-39216999

ABSTRACT

INTRODUCTION: Overtreatment and frequent hospital admissions in patients at end-of-life has been shown in several studies, including in the nursing home (NH) setting. However, overtreatment in NH residents with advanced cancer has not been studied before. Our objective was to compare emergency room (ER) visits and hospital admissions in the last month of life and place of death among NH residents with or without advanced cancer. MATERIALS AND METHODS: This retrospective study is based on Region Stockholm's administrative database from 2015 to 2019. Demographic data, ER visits, and Hospital Frailty Risk Score (HFRS) were extracted for each subject. Univariable and multivariable analyses were performed, and odds ratios (OR) calculated. RESULTS: In total, 30,324 NH residents were identified, of which 1807 had advanced cancer. Advanced cancer was associated with more ER visits in the last month of life in the univariable analysis but not when adjusted for age, sex, and risk of frailty with an adjusted aOR of 1.07 (95 %CI 0.97-1.19). Having a cancer diagnosis was significantly associated with acute hospital admissions, although the association was rather weak with an aOR 1.13 (95 %CI 1.02-1.26). NH residents with advanced cancer were less likely to die in hospital than non-cancer residents: aOR 0.63 (95 %CI 0.54-0.73). DISCUSSION: NH residents with advanced cancer have a slightly higher risk of hospital admissions in the last month of life compared to non-cancer residents but are less likely to die in hospital. The probability of ER visits during the last month of life was similar between NH residents with and without cancer.

9.
Compr Child Adolesc Nurs ; 47(3): 1-19, 2024 07 12.
Article in English | MEDLINE | ID: mdl-38995682

ABSTRACT

Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child's choice of place of death for a child with a non-oncological complex care condition, when death is expected. Eighteen papers were identified considering the preferred place of death. The findings were themed into 1. Diagnostic Factors; 2. Home Factors; 3. Socio-economic Factors; 4. Parent Factors. In conclusion, informed discussions with families that recognize the reason for, and the impact of their choices, are necessary not only for the preferred place of death but also end of life care.


Subject(s)
Terminal Care , Humans , Child , Terminal Care/methods , Terminal Care/psychology , Attitude to Death , Choice Behavior , Death , Parents/psychology
10.
Am J Hosp Palliat Care ; : 10499091241261304, 2024 Jun 10.
Article in English | MEDLINE | ID: mdl-38857320

ABSTRACT

Background: Little is known about the end-of-life (EOL) experience in older adults with stroke or how similar the EOL experience is in older adults with stroke when compared to those with cancer. Purpose: We utilized data from the National Health and Aging Trends Study (NHATS) to compare symptoms, symptom management, and overall rating of care in the last month of life between older adults diagnosed with stroke and those diagnosed with cancer. Methods: Logistic regression was used to examine the associations between diagnosis and symptom prevalence, symptom management, and overall care quality, adjusting for care intensity, place of death, and demographic covariates. Results: A total of 747 NHATS participants diagnosed with stroke or cancer were identified. Diagnosis of stroke was associated with whether the symptoms of pain (OR .46, 95% CI .26-.83), dyspnea (OR .32, 95% CI .17-.64), and emotional distress were documented (OR .57, 95% CI .33-.98). Diagnosis was not associated with pain management (OR .85, 95% CI .48-1.48), dyspnea management (OR .97, 95% CI .47-2.03), or emotional distress management (OR 1.02, 95% CI .53-1.97). Correlates of overall care quality included place of death and diagnosis, with patients with stroke more likely to report poorer care quality (OR 1.77, 95% CI 1.03-3.04) as well as those who died in the hospital (OR 2.18, 95% CI 1.26-3.77). Conclusions: Older adults with stroke are at risk for inadequate symptom assessment and documentation, as well as poorer symptom management and poorer overall care quality.

11.
Lancet Reg Health Am ; 34: 100764, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38779656

ABSTRACT

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.

12.
Scand J Prim Health Care ; 42(3): 471-482, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38662520

ABSTRACT

BACKGROUND: Advance care planning (ACP) allows patients to define their goals and preferences. Spending more time at home and less time in the hospital, along with avoiding death in the hospital, are often considered desirable outcomes of palliative care (PC). In 2015, 36% of cancer patients died in the hospital and 13% died at home in Norway. METHOD: From 2015 to 2022, this prospective controlled non-randomized intervention trial observed 144 cancer patients with or without an organized ACP conversation in primary health care and a summarizing palliative plan (ClinicalTrials.gov Identifier: NCT02170168, 23 June 2014). The patients were identified through contact with the local cancer outpatient clinic or hospital-based PC team. RESULTS: A total of 128 patients died during the observation period. Of these, 67 patients had an organized ACP conversation and summarizing palliative plan (intervention (I) group) and 61 had not (control (C) group). Dying in the hospital was significantly less common for patients in the I group compared to the C group (17.9% vs. 34.4%; X2 (1, n = 128) = 4.55, p = 0.033). There were no differences between the groups in terms of where they spent their time in the last 90 days of life (home, nursing home, or hospital). Most patients (62%) preferred to die at home. The observed differences between the groups regarding preferred and actual places of death did not reach statistical significance. CONCLUSION: With organized ACP conversations in primary health care and a summarizing palliative plan, cancer patients died less often in the hospital in our observational study. A structured ACP approach integrating palliative care for cancer patients into primary health care can support patients´ preferences at the end of life.


Subject(s)
Advance Care Planning , Neoplasms , Palliative Care , Primary Health Care , Humans , Female , Male , Neoplasms/therapy , Neoplasms/mortality , Prospective Studies , Aged , Norway , Middle Aged , Aged, 80 and over , Terminal Care , Adult , Hospitalization , Communication , Patient Preference , Hospital Mortality
13.
Palliat Care Soc Pract ; 18: 26323524241238232, 2024.
Article in English | MEDLINE | ID: mdl-38497045

ABSTRACT

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system. Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization. Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses. Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97-0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region. Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested.

14.
Palliat Care Soc Pract ; 18: 26323524241236964, 2024.
Article in English | MEDLINE | ID: mdl-38510469

ABSTRACT

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.

15.
Age Ageing ; 53(3)2024 03 01.
Article in English | MEDLINE | ID: mdl-38497239

ABSTRACT

BACKGROUND: 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. OBJECTIVES: Review national and regional place of death trends for people with PDRD including pre- and post-pandemic trends. METHODS: 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. RESULTS: 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. CONCLUSION: 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.


Subject(s)
Dementia , Parkinson Disease , Humans , Dementia/epidemiology , England/epidemiology , Pandemics , Parkinson Disease/diagnosis , Parkinson Disease/therapy , Parkinson Disease/epidemiology , Wales/epidemiology , Adult
16.
Ups J Med Sci ; 1292024.
Article in English | MEDLINE | ID: mdl-38371486

ABSTRACT

Context: In amyotrophic lateral sclerosis (ALS), equal care is important, given that the disease often has complex symptoms at the end of life. Objectives: The aim was to study the possible associations between demographic and clinical factors, including age, sex, and frailty, with acute healthcare utilization in the last month of life, measured by emergency room (ER) visits, admissions to acute hospitals and, acute hospitals as place of death, among patients with ALS. A second aim was to study whether receipt of specialized palliative care (SPC) affects above-mentioned healthcare utilization. Methods: Observational, retrospective study based on Region Stockholm's administrative data warehouse (VAL) in Sweden. Data were retrieved for 2015-2021 and analyzed with descriptive statistics and logistic regression models. Results: All deceased patients (n = 448) ≥18 years with ALS were included. The mean age was 70.5 years, 46% were women and 58% had risk of frailty according to Hospital Frailty Risk Score (HFRS). Ninety-nine (22%) were nursing home residents and 49% received SPC. The receipt of SPC in patients with ALS was equal in relation to gender, socio-economic standing, frailty, and age <75 years. Patients ≥75 years, those with dementia and/or residing in nursing homes (NH) were less likely to receive SPC (P = 0.01, P = 0.03 and P = 0.002, respectively). Receipt of SPC reduced ER visits (29% vs. 48%, P < 0.001) and deaths at hospital (12% vs. 48%, P <0.001). Patients who were frail, had a higher risk of ER visits and were more likely to die at an acute hospital setting (P < 0.001 and P = 0.004). NH residents were less likely to have ER visits and to die in hospital (P = 0.002 and P = 0.005). Conclusions: The results indicate partly unequal distribution of palliative care, however the actual, individual preferences cannot be deducted from registry studies. All patients with ALS should be offered SPC when needed. Key message: This register study shows that receipt of SPC in patients with ALS is equal in relation to gender, socioeconomic standing, frailty, and age <75 years, while those ≥75 years, with dementia, or residing in NH were somewhat less likely to receive SPC. Receipt of SPC reduces ER visits and acute hospital admissions.


Subject(s)
Amyotrophic Lateral Sclerosis , Dementia , Frailty , Aged , Female , Humans , Male , Amyotrophic Lateral Sclerosis/therapy , Delivery of Health Care , Dementia/therapy , Palliative Care , Retrospective Studies
17.
Age Ageing ; 53(2)2024 02 01.
Article in English | MEDLINE | ID: mdl-38369628

ABSTRACT

We investigated the relationship between individual-level social vulnerability and place of death during the infectious disease emergency of the COVID-19 pandemic in Massachusetts. Our research represents a unique contribution by matching individual-level death certificates with COVID-19 test data to analyse differences in distributions of place of death.


Subject(s)
COVID-19 , Humans , Pandemics , Social Vulnerability , Massachusetts/epidemiology
18.
J Pain Symptom Manage ; 67(5): 411-419.e3, 2024 May.
Article in English | MEDLINE | ID: mdl-38340907

ABSTRACT

CONTEXT: Home-based deaths are increasing, yet, how wealth influences where people die in the presence of disability remains unknown. OBJECTIVE: To examine place of death by help with (instrumental) activities of daily living (I/ADLs) at the end of life (EOL) and the modifying role of wealth. METHODS: Retrospective study of decedents from the Health and Retirement Study (n = 13,210). The exposure was intensity of help with I/ADLs at the EOL (no help/ lower intensity/higher intensity). The outcome was place of death (hospital/nursing home/home). Household wealth was an effect modifier with six categories: ≤$0, first-fifth quintile. Covariates included age, gender, race, marital status at the EOL, last place of residence, and receipt of hospice care. We used multinomial logit regression models with estimates reported as average marginal effects (AMEs). RESULTS: Mean age was 79.8 years; 53.2% were female. In the adjusted models, compared to not receiving help at EOL, receiving higher-intensity help was associated with a lower probability of dying in a hospital (AME = -3.8 percentage points (pp), 95% CI = -6.3 to -1.3) and a higher probability of dying at home (AME = 3.6 pp, 95% CI = 1.4-5.7). Associations were most pronounced among decedents in the top two wealth quintiles; older adults who received higher-intensity help had a lower probability of dying in a hospital (AME = -9.0 pp, 95% CI = -14.8 to -3.1), and a higher probability of dying at home (AME = 8.4 pp, 95% CI = 3.8-13.0). CONCLUSION: Receiving higher intensity of help with I/ADLs was associated with lower likelihood of dying in a hospital, and higher likelihood of dying at home, particularly among older adults with greater wealth.


Subject(s)
Hospice Care , Terminal Care , Humans , Female , United States/epidemiology , Aged , Male , Retrospective Studies , Activities of Daily Living , Hospitals , Nursing Homes
19.
J Palliat Care ; 39(3): 184-193, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38404130

ABSTRACT

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.


Subject(s)
Attitude to Death , Palliative Care , Patient Preference , Terminal Care , Humans , Male , Female , Palliative Care/statistics & numerical data , Ireland , Aged , Patient Preference/statistics & numerical data , Terminal Care/statistics & numerical data , Middle Aged , Aged, 80 and over , Adult , Surveys and Questionnaires , Logistic Models , Home Care Services/statistics & numerical data
20.
Curr Oncol ; 31(1): 462-471, 2024 01 12.
Article in English | MEDLINE | ID: mdl-38248116

ABSTRACT

Background: Many people want to die at home, but it is often not possible because they do not share their wishes with family members. This study was conducted to find out the extent to which patients with advanced urological malignancies had wishes regarding their final stage of life, made arrangements accordingly, and communicated their wishes to relatives and health care professionals. Methods: We conducted a survey among advanced urological tumor patients during their clinic visit at a German university hospital using a 31-item questionnaire. Inclusion criteria were metastatic or irresectable prostate cancer, urothelial carcinoma, or renal cell carcinoma. Results: In total, 88 patients (76 male, 12 female) completed the questionnaire, and 62 of those respondents (70%) had received their tumor diagnosis within the past 5 years. Symptoms were reported by 80%, and 18% described five or more symptoms. The majority (88%) stated that they had thought about their preferred place of death but 58% had not informed anyone about it. The preference for a hospice as the place of death correlated statistically significantly with the absence of a domestic partnership (p = 0.001) or marriage (p < 0.001) and with a high number of symptoms (≥5; p = 0.009). However, 73% had not talked with their urological oncologist about care options in case their health deteriorated though 36% of those were interested in having a conversation about it. Conclusions: Our results showed that 9 out of 10 patients reflected on their preferred place of death but only a few discussed it with anyone. Based on this finding, physicians and healthcare staff should initiate discussions about early care planning so that patients in incurable situations can express their wishes regarding their preferred place of death.


Subject(s)
Carcinoma, Transitional Cell , Kidney Neoplasms , Terminal Care , Urinary Bladder Neoplasms , Female , Humans , Male , Kidney Neoplasms/therapy , Tertiary Care Centers , Urinary Bladder Neoplasms/therapy
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