Trends in appropriateness of end-of-life care in people with cancer, COPD or with dementia measured with population-level quality indicators.

INTRODUCTION: Measuring changes in the appropriateness of end-of-life care provided to patients with advanced illness such as cancer, COPD or dementia can help governments and practitioners improve service delivery and quality of life. However, an assessment of a possible shift in appropriateness of end-of-life care across the population is lacking. AIM: Measuring quality indicators with routinely collected population-level data, this study aims to evaluate the appropriateness of end-of-life care for people with cancer, COPD or dementia in Belgium. DESIGN: A population-level decedent cohort study, using data from eight population-level databases, including death certificate and health claims data. We measured validated sets of quality indicators for appropriateness of end-of-life care. SETTING/PARTICIPANTS: All people who died from cancer or COPD or with dementia between 1st January 2010 and 1st January 2016 in Belgium. RESULTS: We identified three main trends over time across the three disease groups of increasing use of: family physicians in the last 30 days of life (+21.7% in cancer, +33.7% in COPD and +89.4% in dementia); specialist palliative care in the last 14 days of life (+4.6% in cancer, +36.9% in COPD, +17.8% in dementia); and emergency department in the last 30 days of life (+7.0% in cancer, +4.4% in COPD and +8.2% in dementia). CONCLUSIONS: Although we found an increase of both specialized palliative care and generalist palliative care use, we also found an increase in potentially inappropriate care, including ED and ICU admissions. To increase the quality of end-of-life care, both timely initiating (generalist and specialist) palliative care and avoiding potentially inappropriate care transitions, treatments and medications need to be quality performance targets.

Educación tanatológica en Enfermería / Thanatological education in Nursing

Todo paciente terminal y su entorno pasan por una difícil situación que involucra la muerte, el dolor y la decisión. Para cualquier profesional de la salud es necesario contar con los conocimientos necesarios acerca de los cuidados tanatológicos al paciente o familia, para lograr incrementar el grado de conciencia en lo concerniente a su significado, divulgación y accesibilidad, teniendo en cuenta que es importante la comprensión de dichos cuidados. Los cuidados tanatológicos ante situaciones terminales son la expresión y el cumplimiento de un servicio indispensable en determinadas circunstancias de la vida. El acompañamiento en la última fase de la vida debe ser comprendido con la naturaleza y el conocimiento necesario, por lo que toda escuela que forme recursos en salud debe ofrecer al alumno las herramientas adecuadas para que, a su egreso como profesional de la salud, pueda atender correctamente al paciente en esta fase. La profesión de Enfermería se ha caracterizado por su gran labor humanística, por el ímpetu de aminorar el dolor de todo enfermo, comprendiendo el eje bio-psico-social que rodea a todo paciente y su enfermedad. En el camino asistencial de todo enfermo, el personal de Enfermería juega un rol muy importante al estar en mayor contacto con el paciente, es en este punto donde dos ciencias (Enfermería y Tanatología) se unen para asistir decorosamente a pacientes terminales. Las escuelas formadoras de capital humano en salud deben enfocarse en esta nueva necesidad de la sociedad y crear modelos de atención específicos para pacientes terminales.

Every terminal patient and their environment go through a difficult situation, death, pain and decision. For any health professional, it is necessary to have the necessary knowledge about thanatological care for the individual or family, in order to increase the degree of awareness regarding its meaning, dissemination and accessibility, taking into account that it is important to understand said care. Thanatological care in terminal situations is the expression and fulfillment of an essential service in certain life circumstances. The accompaniment in the last phase of life must be understood with the nature and the necessary knowledge, so that every school that trains health resources must have the correct training so that the health professional who graduates can properly attend to the patient In this phase. The nursing profession has been characterized for many years by its great humanistic work, by the impetus to reduce the pain of every patient, understanding the bio-psycho-social axis that surrounds every patient and their illness. In the care path of every patient, the nursing staff plays a very important role by being in greater contact with the patient, it is at this point where two sciences (nursing and tanology) come together to decently assist terminal patients. Schools that train human capital in health should focus on this new need of society and create specific care models for terminal patients.

US Trends in Opioid Access Among Patients With Poor Prognosis Cancer Near the End-of-Life.

PURPOSE: Heightened regulations have decreased opioid prescribing across the United States, yet little is known about trends in opioid access among patients dying of cancer. METHODS: Among 270,632 Medicare fee-for-service decedents with poor prognosis cancers, we used part D data to examine trends from 2007 to 2017 in opioid prescription fills and opioid potency (morphine milligram equivalents per day [MMED]) near the end-of-life (EOL), defined as the 30 days before death or hospice enrollment. We used administrative claims to evaluate trends in pain-related emergency department (ED) visits near EOL. RESULTS: Between 2007 and 2017, the proportion of decedents with poor prognosis cancers receiving ≥ 1 opioid prescription near EOL declined 15.5% (relative percent difference [RPD]), from 42.0% (95% CI, 41.4 to 42.7) to 35.5% (95% CI, 34.9 to 36.0) and the proportion receiving ≥ 1 long-acting opioid prescription declined 36.5% (RPD), from 18.1% (95% CI, 17.6 to 18.6) to 11.5% (95% CI, 11.1 to 11.9). Among decedents receiving opioids near EOL, the mean daily dose fell 24.5%, from 85.6 MMED (95% CI, 82.9 to 88.3) to 64.6 (95% CI, 62.7 to 66.6) MMED. Overall, the total amount of opioids prescribed per decedent near EOL (averaged across those who did and did not receive an opioid) fell 38.0%, from 1,075 morphine milligram equivalents per decedent (95% CI, 1,042 to 1,109) to 666 morphine milligram equivalents per decedent (95% CI, 646 to 686). Simultaneously, the proportion of patients with pain-related ED visits increased 50.8% (RPD), from 13.2% (95% CI, 12.7 to 13.6) to 19.9% (95% CI, 19.4 to 20.4). Sensitivity analyses demonstrated similar declines in opioid utilization in the 60 and 90 days before death or hospice, and suggested that trends in opioid access were not confounded by secular trends in hospice utilization. CONCLUSION: Opioid use among patients dying of cancer has declined substantially from 2007 to 2017. Rising pain-related ED visits suggests that EOL cancer pain management may be worsening.

Health care utilization at end of life among patients with lung or pancreatic cancer. Comparison between two Swedish cohorts.

OBJECTIVES: The purpose was to analyze trends in intensity of care at End-of-life (EOL), in two cohorts of patients with lung or pancreatic cancer. SETTING: We used population-based registry data on health care utilization to describe proportions and intensity of care at EOL comparing the two cohorts (deceased in the years of 2010 and 2017 respectively) in the region of Stockholm, Sweden. PRIMARY AND SECONDARY OUTCOMES: Main outcomes were intensity of care during the last 30 days of life; systemic anticancer treatment (SACT), emergency department (ED) visits, length of stay (LOS) > 14 days, intensive care (ICU), death at acute care hospital and lack of referral to specialized palliative care (SPC) at home. The secondary outcomes were outpatient visits, place of death and hospitalizations, as well as radiotherapy and major surgery. A multivariable logistic regression analysis was used for associations. A moderation variable was added to assess for the effect of SPC at home between the cohorts. RESULTS: Intensity of care at EOL increased over time between the cohorts, especially use of SACT, increased with 10%, p<0.001, (n = 102/754 = 14% to n = 236/972 = 24%), ED visits with 7%, p<0.001, (n = 25/754 = 3% to n = 100/972 = 10%) and ICU care, 2%, p = 0.04, (n = 12/754 = 2% to n = 38/972 = 4%). High intensity of care at EOL were more likely among patients with lung cancer. The difference in use of SACT between the years, was moderated by SPC, with an increase of SACT, unstandardized coefficient ß; 0.87, SE = 0.27, p = 0.001, as well as the difference between the years in death at acute care hospitals, that decreased (ß = 0.69, SE = 0.26, p = 0.007). CONCLUSION: These findings underscore an increase of several aspects regarding intensity of care at EOL, and a need for further exploration of the optimal organization of EOL care. Our results indicate fragmentation of care and a need to better organize and coordinate care for vulnerable patients.

Healthcare Utilization for Stroke Patients at the End of Life: Nationally Representative Data.

Objectives Stroke and post-stroke complications are associated with high morbidity, mortality, and cost. Our objective was to examine healthcare utilization and hospice enrollment for stroke patients at the end of life. Materials and methods The 2014 Nationwide Readmissions Database is a national database of > 14 million admissions. We used validated ICD-9 codes to identify fatal ischemic stroke, summarized demographics and hospitalization characteristics, and examined healthcare use within 30 days before fatal stroke admission. We used de-identified 2014 Medicare hospice data to identify stroke and non-stroke patients admitted to hospice. Results Among IS admissions in 2014 (n = 472,969), 22652 (4.8%) had in-hospital death. 28.2% with fatal IS had two or more hospitalizations in 2014. Among those with fatal IS admission, 13.0% were admitted with cerebrovascular disease within 30 days of fatal IS admission. Half of stroke patients discharged to hospice from the Medicare dataset were hospitalized with cerebrovascular disease within the thirty days prior to hospice enrollment. Within the study year, 6.9% of hospice enrollees had one or more emergency room visits, 31.7% had one or more inpatient encounters, and 5.2% had one or more nursing facility encounters (compared to 21.4%, 70.6%, and 27.2% respectively in the 30-day period prior to enrollment). Conclusions High rates of readmission prior to fatal stroke may indicate opportunity for improvement in acute stroke management, secondary prevention, and palliative care involvement as encouraged by AHA/ASA guidelines. For patients who are expected to survive 6 months or less, hospice may offer goal-concordant services for patients and caregivers who desire comfort-focused care.

Projecting palliative and end-of-life care needs in Central Lancashire up to 2040: an integrated palliative care and public health approach.

OBJECTIVES: A collaborative study was undertaken by palliative care and public health on behalf of Chorley & South Ribble and Greater Preston Clinical Commissioning Groups. Going beyond a traditional needs assessment by providing projections of local palliative and end-of-life care needs in all conditions over 20 years, the study will support locality commissioning and development of appropriate health care services. STUDY DESIGN: Population-based needs assessment involving secondary analysis of routinely available regional mortality and population data for Central Lancashire (2017). Palliative care need was estimated using three different recognised methods. METHODS: These estimates were combined with routinely available population and mortality projections and observed trends in palliative care need to provide projections up to 2040. RESULTS: Palliative care need in 2017 in Chorley & South Ribble and Greater Preston is estimated to be between 75% (1292) and 97% (1670), and 74.9% (1337) and 95.7% (1710) of all deaths, respectively. By 2040, the annual need is projected to increase compared with 2017 figures, by 24.2-55.9% (314-729 more deaths) in Chorley & South Ribble and by 13.4-41.4% (180-554 more deaths) in Greater Preston. The numbers of deaths from dementia are forecast to increase by three-fold in both localities. CONCLUSION: This study demonstrates practical application of public health data to support the development of locally responsive palliative care services. Dissemination of findings from this needs assessment on rising palliative care need, including numbers of deaths in different disease groups, provides direction to plan appropriate, equitable and sustainable services. Rapidly growing dementia deaths deserve particular attention in the planning of care. Collaborative work between public health and palliative care in other settings is encouraged, and will likely increase in significance as the full impact of COVID-19 is felt.

Goal of a "Good Death" in End-of-Life Care for Patients with Hematologic Malignancies-Are We Close?

PURPOSE OF REVIEW: The medical field has a critical role not only in prolonging life but also in helping patients achieve a good death. Early studies assessing end-of-life quality indicators to capture if a good death occurred demonstrated low rates of hospice use and high rates of intensive healthcare utilization near death among patients with hematologic malignancies, raising concerns about the quality of death. In this review, we examine trends in end-of-life care for patients with hematologic malignancies to determine if we are close to the goal of a good death. RECENT FINDINGS: Several cohort studies show that patients with blood cancers are often inadequately prepared for the dying process due to late goals of care discussions and they experience low rates of palliative and hospice care. More recent analyses of population-based data demonstrate some improvements over time, with significantly more patients receiving palliative care, enrolling in hospice, and having the opportunity to die at home compared to a decade ago. These encouraging trends are paradoxically accompanied by concomitant increases in late hospice enrollment and intensive healthcare utilization near death. Although we are closer to the goal of a good death for patients with hematologic malignancies, there is ample room for growth. To close the gap between the current state of care and a good death, we need research that engages patients, caregivers, hematologic oncologists, and policy-makers to develop innovative interventions that improve timeliness of goals of care discussions, expand palliative care integration, and increase hospice use.

Kennedy terminal ulcer and other skin wounds at the end of life: An integrative review.

AIMS: To undertake an integrative literature review to identify, analyse and synthesize current literature on the Kennedy terminal ulcer (KTU) and other unavoidable skin injuries that appear at the end of life regardless of the healthcare context in which they occur. METHODS: Integrative review following the Whittemore and Knafl methodology. The search was carried out in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Scopus. It was limited to articles in English, French, Portuguese and Spanish. As there is little scientific production on the subject, no restrictions were applied regarding publication date. RESULTS: Only 17 articles met the inclusion criteria. These articles were reviewed and analysed. Four relevant issues emerged: Skin failure, SCALE, Kennedy Terminal Ulcer, Trombley-Brennan: different names for the same problem; the defining characteristics and physiopathology of KTU; the differences between KTU and other injuries; and the care approach for KTU and other unavoidable injuries at the end of life. CONCLUSIONS: We identified gaps regarding the physiopathology of KTU since the current knowledge is based only on hypotheses. There is also a large gap in the knowledge about care approaches, perhaps because care plans are not recorded. Despite this, it is clear that the main objective in this situation at the end of life would be to prioritize patient comfort and quality of life.

A Network Analysis of Research Topics and Trends in End-of-Life Care and Nursing.

This study identified the trends in end-of-life care and nursing through text network analysis. About 18,935 articles published until September 2019 were selected through searches on PubMed, Embase, Cochrane, Web of Science, and Cumulative Index to Nursing and Allied Health Literature. For topic modeling, Latent Dirichlet Allocation (K = 8) was applied. Most of the top ranked topic words for the degree and betweenness centralities were consistent with the top 1% through the semantic network diagram. Among the important keywords examined every five years, "care" was unrivaled. When analyzing the two- and three-word combinations, there were many themes representing places, roles, and actions. As a result of performing topic modeling, eight topics were derived as ethical issues of decision-making for treatment withdrawal, symptom management to improve the quality of life, development of end-of-life knowledge education programs, life-sustaining care plan for elderly patients, home-based hospice, communication experience, patient symptom investigation, and an analysis of considering patient preferences. This study is meaningful as it analyzed a large amount of existing literature and considered the main trends of end-of-life care and nursing research based on the core subject control and semantic structure.

Trends in Noninvasive and Invasive Mechanical Ventilation Among Medicare Beneficiaries at the End of Life.

Importance: End-of-life care is costly, and decedents often experience overtreatment or low-quality care. Noninvasive ventilation (NIV) may be a palliative approach to avoid invasive mechanical ventilation (IMV) among select patients who are hospitalized at the end of life. Objective: To examine the trends in NIV and IMV use among decedents with a hospitalization in the last 30 days of life. Design, Setting, and Participants: This population-based cohort study used a 20% random sample of Medicare fee-for-service beneficiaries who had an acute care hospitalization in the last 30 days of life and died between January 1, 2000, and December 31, 2017. Sociodemographic, diagnosis, and comorbidity data were obtained from Medicare claims data. Data analysis was performed from September 2019 to July 2020. Exposures: Use of NIV or IMV. Main Outcomes and Measures: Validated International Classification of Diseases, Ninth Revision, Clinical Modification or International Statistical Classification of Diseases, Tenth Revision, Clinical Modification procedure codes were reviewed to identify use of NIV, IMV, both NIV and IMV, or none. Four subcohorts of Medicare beneficiaries were identified using primary admitting diagnosis codes (chronic obstructive pulmonary disease [COPD], congested heart failure [CHF], cancer, and dementia). Measures of end-of-life care included in-hospital death (acute care setting), hospice enrollment at death, and hospice enrollment in the last 3 days of life. Random-effects logistic regression examined NIV and IMV use adjusted for sociodemographic characteristics, admitting diagnosis, and comorbidities. Results: A total of 2 470 435 Medicare beneficiaries (1 353 798 women [54.8%]; mean [SD] age, 82.2 [8.2] years) were hospitalized within 30 days of death. Compared with 2000, the adjusted odds ratio (AOR) for the increase in NIV use was 2.63 (95% CI, 2.46-2.82; % receipt: 0.8% vs 2.0%) for 2005 and 11.84 (95% CI, 11.11-12.61; % receipt: 0.8% vs 7.1%) for 2017. Compared with 2000, the AOR for the increase in IMV use was 1.04 (95% CI, 1.02-1.06; % receipt: 15.0% vs 15.2%) for 2005 and 1.63 (95% CI, 1.59-1.66; % receipt: 15.0% vs 18.2%) for 2017. In subanalyses comparing 2017 with 2000, similar trends found increased NIV among patients with CHF (% receipt: 1.4% vs 14.2%; AOR, 14.14 [95% CI, 11.77-16.98]) and COPD (% receipt: 2.7% vs 14.5%; AOR, 8.22 [95% CI, 6.42-10.52]), with reciprocal stabilization in IMV use among patients with CHF (% receipt: 11.1% vs 7.8%; AOR, 1.07 [95% CI, 0.95-1.19]) and COPD (% receipt: 17.4% vs 13.2%; AOR, 1.03 [95% CI, 0.88-1.21]). The AOR for increased NIV use was 10.82 (95% CI, 8.16-14.34; % receipt: 0.4% vs 3.5%) among decedents with cancer and 9.62 (95% CI, 7.61-12.15; % receipt: 0.6% vs 5.2%) among decedents with dementia. The AOR for increased IMV use was 1.40 (95% CI, 1.26-1.55; % receipt: 6.2% vs 7.6%) among decedents with cancer and 1.28 (95% CI, 1.17-1.41; % receipt: 5.7% vs 6.2%) among decedents with dementia. Among decedents with NIV vs IMV use, lower rates of in-hospital death (50.3% [95% CI, 49.3%-51.3%] vs 76.7% [95% CI, 75.9%-77.5%]) and hospice enrollment in the last 3 days of life (57.7% [95% CI, 56.2%-59.3%] vs 63.0% [95% CI, 60.9%-65.1%]) were observed along with higher rates of hospice enrollment (41.3% [95% CI, 40.4%-42.3%] vs 20.0% [95% CI, 19.2%-20.7%]). Conclusions and Relevance: This study found that the use of NIV rapidly increased from 2000 through 2017 among Medicare beneficiaries at the end of life, especially among persons with cancer and dementia. The findings suggest that trials to evaluate the outcomes of NIV are warranted to inform discussions about the goals of this therapy between clinicians and patients and their health care proxies.

Temporal Trends and Sex Differences in Intensity of Healthcare at the End of Life in Adults With Heart Failure.

Background Patients with chronic disease prefer an adequately supported death at home, but often die in the hospital. We assessed temporal trends and sex differences in healthcare intensity and location of death among decedents with heart failure. Methods and Results This was a retrospective cohort study of adults with heart failure who died between April 1, 2004 and March 31, 2017 in Ontario, Canada. We used population-based administrative databases to assess healthcare utilization during the last 6 months of life and applied multilevel multivariable logistic regression to assess whether sex was independently associated with location of death. Among 396 024 decedents with heart failure, mean (SD) age was 81.8 (10.7) years, 51.5% were women, and 53.4% had in-hospital deaths. From 2004 to 2016, there was an increase in patients receiving mechanical ventilation (15.1%-19.6%), hemodialysis (5.2%-6.8%), and cardiac revascularization (1.7%-2.3%). Relative to men, women spent fewer days in a hospital (mean, 16.4 versus 18.3; mean difference, 1.9; 95% CI, 1.7-2.0; P<0.001) and in an intensive care unit (mean, 2.1 versus 3.0; mean difference, 0.9; 95% CI, 0.8-0.9; P<0.001); and less commonly received mechanical ventilation (15.5% versus 20.8%; P<0.001); hemodialysis (4.8% versus 7.7%; P<0.001); or cardiac catheterization (2.8% versus 4.6%; P<0.001). Female sex was independently associated with lower odds of in-hospital death (odds ratio, 0.88; 95% CI, 0.87-0.89). Mean (SD) 6-month direct healthcare cost was greater for in-hospital ($52 349 [$55 649]) than out-of-hospital ($35 998 [$31 900]) death. Conclusions Among decedents with heart failure, invasive care in the last 6 months increased in prevalence over time but was less common in women, who had lower odds of dying in a hospital.

Experiences with the Liverpool care pathway for the dying patient in nursing home residents: a mixed-method study to assess physicians' and nurse practitioners' perceptions.

BACKGROUND: The Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes. METHODS: A mixed-methods approach was used, consisting of a survey followed by interviews. A link to a 9-item online survey with closed and open-ended questions was emailed to all physicians and nurse practitioners of 33 care organisations with nursing homes in three regions of the Netherlands (North, West and South). In addition, 10 respondents with particularly positive or negative experiences were selected for semi-structured interviews. RESULTS: The survey was completed by 159 physicians and nurse practitioners. The respondents were very positive on the content and less positive on the use of the LCP, although they reported difficulties identifying the right time to start the LCP, especially in case of dementia. Also using the LCP was more complicated after the implementation of the electronic health record. The LCP was judged to be a marker of quality for the assessment of symptoms in the dying phase and communication with relatives. CONCLUSION: An instrument that prompts regular assessment of a dying person was perceived by those responsible for (medical) care to contribute to good care. As such, the LCP was valued, but there was a clear need to start it earlier than in the last days or hours of life, a need for a shorter version, and for integration of the LCP in the electronic health record. Regular assessments with an instrument that focusses on quality of care and good symptom control can improve palliative care for nursing home residents with and without dementia.

Hoping for the best, planning for the worst: Palliative care approach to Parkinson disease during the COVID-19 pandemic.

Palliative care emphasizes expertise in handling difficult conversations, discussing patients' wishes and supporting the caregiver(s). Here we outline the palliative approach of hoping for the best while preparing for the worst in several "what if" scenarios for people with Parkinson disease and their families during the COVID-19 pandemic.

It is feasible to flag 'near end-of-life' status in older patients from routine general practice data.

METHOD: A retrospective chart review was used to assess the feasibility of identifying these indicators in the data (160,897 patients from 464 practices across Australia). Conditional logistic regression was used to assess the independent contribution of nEOL indicators in patients aged 75-84 and ≥85 years using a case-control design matching by practice. RESULTS: The strongest indicators for nEOL status were advanced malignancy, residential aged care, nutritional vulnerability, anaemia, cognitive impairment and heart failure. Other indicators included hospital attendance, pneumonia, decubitus ulcer, chronic obstructive pulmonary disease, antipsychotic prescription, male sex and stroke. DISCUSSION: Consideration of routinely collected patient data may suggest nEOL status and trigger advance care planning discussions.

Advance Care Planning Engagement Among Muslim Community-Dwelling Adults Living in the United States.

Advance care planning (ACP) is a cornerstone of self-determination for the type of care provided at the end of life. Despite many national efforts to improve American adults' engagement in ACP, statistics indicate low engagement. Low engagement, especially among racial and ethnic minority populations, immigrants, people with lower socioeconomic status, young adults, rural residents, or non-English speakers, is common. Advance care planning engagement among Muslims living in the United States has been minimally studied. The purpose of this study was to explore Muslims' engagement in ACP. A cross-sectional descriptive design was used. Participants were recruited from Islamic organizations through convenience and snowball sampling. Engagement in ACP was measured by the Advance Care Planning Engagement Survey. A sample of 148 Muslims (18-79 years of age) participated in the study. The average engagement scores ranged from 1.97 to 2.09, with about two-thirds in the precontemplation stage. Significant differences in engagement scores were found according to health condition and end of life experiences. Results suggest a need for further collaborative efforts by health care providers, policymakers, and researchers to mitigate the disparities in ACP engagement in the American Muslim community.

Expanding the 3 Wishes Project for compassionate end-of-life care: a qualitative evaluation of local adaptations.

BACKGROUND: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs. METHODS: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program. RESULTS: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose. CONCLUSIONS: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other. TRIAL REGISTRATION: NCT04147169 , retrospectively registered with clinicaltrials.gov on October 31, 2019.

Assessment of changes in place of death of older adults who died from dementia in the United States, 2000-2014: a time-series cross-sectional analysis.

BACKGROUND: As the mortality attributable to dementia-related diseases in the United States escalates, providing quality and equitable end-of-life care for dementia patients across care settings has become a major public health challenge. Previous research suggests that place of death may be an indicator of quality of end-of-life care. This study aims to examine the geographical variations and temporal trends in place of death of dementia decedents in the US and the relationships between place of death of dementia decedents and broad structural determinants. METHODS: Using nationwide death certificates between 2000 and 2014, we described the changes in place of death of dementia decedents across states and over time. Chi-square test for trend in proportions was used to test significant linear trend in the proportion of dementia decedents at difference places. State fixed effects models were estimated to assess the relationships between the proportion of dementia decedents at difference places and state-level factors, particularly availability of care facility resources and public health insurance expenditures. RESULTS: Dementia decedents were more likely to die at home and other places and less likely to die at institutional settings over the study period. There was wide inter-state and temporal variability in the proportions of deaths at different places. Among state-level factors, availability of nursing home beds was positively associated with rates of nursing home/long term care deaths and negatively associated with rates of home deaths. Medicaid expenditure on institutional long term supports and services was positively associated with rates of nursing home/long term care deaths and negatively associated with rates of home deaths. Medicaid expenditure on home and community based services, however, had a positive association with rates of home deaths. CONCLUSIONS: There was a persistent shift in the place of death of dementia decedents from institutions to homes and communities. Increased investments in home and community based health services may help dementia patients to die at their homes. As home becomes an increasingly common place of death of dementia patients, it is critical to monitor the quality of end-of-life care at this setting.