End Of Life Experience Research Articles

Perspectives on Death and Dying by the Bereaved Designated Personal Representatives of Women Diagnosed With Metastatic Breast Cancer.

Metastatic breast cancer (MBC) is a complex disease with variability in disease subtype, length of survival, treatment selection, symptom burden, and, ultimately, end-of-life (EOL) care. Influencing factors that contribute to the complexity of this disease are socioeconomic factors, provider differences, and patient and family preferences. Because of this variability, it is challenging for health care providers to know when treatments are no longer helpful but contribute to a poor quality of end-of-life care and a poor death experience for both patients and their families. Determining the unique point, based on their own values and goals, at which patients and their family members feel that MBC treatment becomes unhelpful and unwanted, is difficult to ascertain. Of the 25 individuals who participated in the Quality of Death and Dying survey, 16 individuals participated in an interview to provide a reflection of the patient's EOL experience and its congruence with their wishes. Four major categories emerged as primary priorities essential to high quality end-of-life care, that is, resilience, communication, support, and knowledge. Without tailored and precise care, patients with MBC will continue to receive prolonged, inappropriate, and costly treatment, resulting in a potentially unacceptable poor-quality EOL and death experience.

Bereaved Parents’ Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study

ObjectiveTo explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity. Study designWe performed secondary analysis of semi-structured interviews of bereaved parents’ perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework. ResultsMost participants were non-Hispanic White (30; 55%), and the most common diagnoses were non-central nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions. ConclusionsAs FT affected almost all families’ EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond.

A Tale of 2 Experiences: Navigating End-of-Life Care With a History of Incarceration.

The adverse health effects of incarceration are well-documented, affecting individuals throughout their life course. However, the influence of a history of incarceration on end-of-life (EOL) experiences remains unexplored. This study aims to examine how prior incarceration affects individuals' experiences and care needs as they approach the EOL. Leveraging the Health and Retirement Study, we conducted secondary analyses on 1710 individuals who participated between 2012 and 2018. Through retrospective cohort analysis, we explored the association between incarceration history and EOL care, focusing on pain and symptom burden. Analyses showed that individuals with a history of incarceration experienced significantly higher levels of pain (65% reported "moderate" or "severe" pain) compared tononincarceratedindividuals (50%; adjusted odds ratio = 1.45, 95% confidence interval [CI]: 1.22-1.71, p < .001). Additionally, the symptom burden index revealed that formerly incarcerated individuals had a higher average symptom score (2.8 vs 2.1; β = 0.7, 95% CI: 0.5-0.9, p < .001), indicating a greater range of symptoms in their final year of life. These disparities persisted after adjusting for demographic, health, and socioeconomic variables. This study reveals that a history of incarceration significantly affects EOL experiences, with formerly incarcerated individuals facing higher levels of pain and a greater symptom burden compared tononincarceratedindividuals. This underscores the need for tailored palliative care to address the unique needs of this vulnerable population. This research highlights a critical area for intervention and calls for healthcare systems to adapt their practices to better serve those with incarceration histories.

Compassionate Ventilator Release in Patients With Neuromuscular Disease: A Two-Case Comparison

Dyspnea, the subjective sensation of breathlessness, is a distressing and potentially traumatic symptom. Dyspnea associated with mechanical ventilation may contribute to intensive care unit (ICU) associated post-traumatic stress disorder and impaired quality of life. Dyspnea is both difficult to alleviate and a cause of significant distress to patients, their loved ones, and care providers People living with neuromuscular disease, such as amyotrophic lateral sclerosis (ALS) or myasthenia gravis (MG), often rely on a ventilator at late stages of illness due to complications of progressive respiratory muscle weakness and paralysis. When unable to wean from the ventilator, conversations turn towards goals of care and release from the ventilator for comfort and end of life (EOL). Patients with and without neuromuscular disease have high risk for dyspnea at EOL upon ventilator liberation. Although limited recommendations have been published specific to patients with ALS, no guidelines currently exist for the terminal liberation from mechanical ventilation in patients experiencing respiratory muscle insufficiency from a neuromuscular disease. Further research on this topic is needed, including creation of a protocol for ventilator release in patients with neuromuscular disease. The following case reports detail the dissimilar EOL experiences of two patients with different forms of neuromuscular disease.

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life

ContextChildren from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. ObjectiveWe examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. MethodsWe conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. ResultsWe included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25–0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21–3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1–0.63). ConclusionPalliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences.

The Cost of Dying Exhibition: public, professional and political reactions to a visual exhibition depicting experiences of poverty at the end of life

Public health approaches to palliative care are internationally endorsed for their potential to improve the social determinants of dying such as energy costs, transport and housing. Enhancing public understanding of...

Older Adults' Unmet Needs at the End of Life: A Cross-Country Comparison of the United States and England.

Objectives: This study aimed to compare the end-of-life (EOL) experiences in concentration with place of death, for older adults in the U.S. and England. Methods: Weighted comparative analysis was conducted using harmonized Health and Retirement Study and English Longitudinal Study of Ageing datasets covering the period of 2006-2012. Results: At the EOL, more older adults in the U.S. (64.14%) than in England (54.09%) had unmet needs (I/ADLs). Home was the main place of death in the U.S. (47.34%), while it was the hospital in England (58.01%). Gender, marital status, income, place of death, previous hospitalization, memory-related diseases, self-rated health, and chronic diseases were linked to unmet needs in both countries. Discussion: These findings challenge the existing assumptions about EOL experiences and place of death outcomes, emphasizing the significance of developing integrated care models to bolster support for essential daily activities of older adults at the EOL.

After-Death Communications (ADCs) from Non-Human Animals: Parallels with Human ADCs

In an earlier study, Rupert Sheldrake, Pam Smart, and Michael Nahm reviewed accounts of end-of-life experiences (ELEs) involving non-human animals. They showed animal ELEs to be similar to human ELEs, suggesting common underlying processes. Here, we consider apparent after-death communications (ADCs) from non-human animals and compare them to accounts of ADCs from humans. We collected 442 accounts of animal ADCs from our own appeals and from reports in the literature. We found a close resemblance between ADCs from animals and from humans in the types of experience—dream visitations, a sense of presence, visual, auditory, tactile, and olfactory apparitions, and psychokinetic effects. As with human ADCs, the great majority of animal ADCs were reported to have occurred in the first hours or days after death, with a dramatic falling off over time. Moreover, our data show that people grieve their pets in much the same fashion as they grieve their human loved ones, suggesting that human bereavement studies would do well to take into account the animal data to which we draw attention. Doing so may help clarify issues regarding the fundamental nature of the experiences—determining whether they are best regarded as internal hallucinations, as living-agent-psi-mediated subjective or objective phenomena, or as actual contacts with the deceased—which in turn carries implications not only for academic studies of bereavement but for clinical practice with the bereaved.

Developing and evaluating Compassionate Workplace Programs to promote health and wellbeing around serious illness, dying and loss in the workplace (EU-CoWork): a transdisciplinary, cross-national research project

Background: Most employees will experience serious illness, caregiving, dying and loss (End-of-Life (EoL) experiences) at multiple points throughout their working lives. These experiences impact affected employees but also their colleagues in terms of health and wellbeing, and the workplace as a whole in terms of workplace safety, productivity and labour relations. The impact of EoL experiences on employees means that workplaces are called to play a more active role in providing support for EoL experiences. Aim: To describe how the EU-CoWork (2024–2028) project addresses its main aims to (1) create Compassionate Workplace cultures, practices and policies and improve health and wellbeing for employees dealing with EoL experiences in different national work contexts in Europe; (2) describe and evaluate the process of co-creation and implementation of Compassionate Workplace Programs (CWPs) and how these influence the programs’ outcomes. Design: EU-CoWork employs a facilitated and co-creative Developmental Evaluation approach to the development of 12 tailored CWPs across four European countries (Belgium, Austria, Sweden and Greece). Methods: To evaluate the outcomes and processes leading to these outcomes, a mixed-methods Realist Evaluation methodology is applied, formulating and testing Context-Mechanism-Outcomes configurations and combining longitudinal quantitative and qualitative data collections. Results: EU-CoWork will generate evidence to support an expanded model of occupational health and safety risk factors sensitive to the specific challenges related to employees’ EoL experiences. In doing so, several challenges will have to be navigated: involving employees with EoL experiences while avoiding overburdening them, avoiding tokenistic engagement, managing power differentials, balancing the need for scientific rigour with the flexibility required in co-creation, reconciling different epistemologies and disciplinary traditions and organisational resistance to change. Conclusion: There are potential long-lasting broader societal impacts through the stimulation of open discourse on EoL topics, the reconciliation of work and care, and changes in gendered work and care patterns.

HOSPICE USE AND END-OF-LIFE EXPERIENCE BY RACE AND GEOGRAPHY: A LATENT CLASS ANALYSIS

Abstract Long existing inequalities near the end-of-life (EOL), including the death experience, have been uncovered because of increased attention during the COVID-19 pandemic. Hospice may be an avenue to equalize EOL experiences. This study aimed to 1) understand the profiles of hospice use and EOL experience in a national representative sample of decedents and 2) uncover how race and/or geographic location predict class membership. We conducted a latent class analysis with covariates using Waves 9-11 (n=1050) from the last month of life interview in the National Health and Aging Trends Study. Based on fit statistics, response probabilities, class separation, interpretability, and fit with theory, a four-class model was ultimately selected. The four latent classes were: well-rounded hospice care; no hospice, goal concordant care; no hospice, poor overall care; and complex hospice care. We found that geographic location was not a significant predictor of latent class membership but being non-White was significantly associated (p &amp;lt; .001) with 8.79 times higher odds of being in the no hospice, poor overall care group and 1.85 times higher odds of being in the no hospice, complex care group compared to the reference class (well-rounded hospice care). The current study’s findings paint a complex picture of hospice use and EOL experience in a nationally representative sample. Hospice use alone does not make a “good death” experience, particularly for people of color. Rather, there are unique profiles of hospice use and experiences at EOL. Future research should explore the impact of geographic location on the death experience.

PREDICTORS OF HOSPICE AND END-OF-LIFE CARE: GEOGRAPHIC LOCATION, PATIENT PORTALS, NURSING HOME CARE, AND HOME HEALTH

Abstract Hospice is considered an indicator of high-quality care at end-of-life (EOL) often allowing patients to receive care aligned with their values, in their homes, surrounded by support and loved-ones. However, there is a need to address access barriers to hospice and enroll patients earlier in their disease trajectory. Understanding predictors of hospice use will help identify strategies for addressing hospice inequities, promoting longer hospice stays, and improving overall EOL outcomes. Focusing on research methodologies with large cohorts and national samples, this symposium examines the associations of health care services and inequalities on key EOL outcomes and hospice use. First, Autumn Decker will describe profiles of hospice use and EOL experience by geographic location and race from the National Health and Aging Trends Study. Next, Dr. Jennifer Portz will summarize the association between types of patient portal use and EOL outcomes including hospitalization, advance directives, and hospice use. Dr. Ellis Dillon will follow with a description of hospice use and short hospice length of enrollment for Conneticut’s Medicaid decedents, comparing decedents with nursing home stays to those without. Lastly, Dr. Olga Jarrin will present findings from her study of home health care use during the last 3 years of life as a predictor of death with hospice in a Medicare cohort. Our discussant, Dr. Karla Washington, will lead us in a conversation outlining the role of health care services, such as home health, nursing home care, and patient portals, for promoting access to hospice earlier and for all patients.

The influence of religion/spirituality (R/S) on end of life (EOL) outcomes among patients of Dharmic religions with cancer: A mixed methods study.

230 Background: Spiritual support of cancer patients has been associated with improved EOL outcomes; however, little is known about EOL experiences among cancer patients who identify with a Dharmic religion (DR; Hinduism, Buddhism, Sikhism, Jainism). This study used mixed methods to evaluate utilization and EOL care preferences among DR cancer patients. Methods: We conducted a secondary analysis of data from a separate retrospective study of utilization of chaplaincy services by patients hospitalized at a specialty cancer center in New York City between 2015 and 2019. This database included information about patients' religious identification and about accepted measures of EOL care utilization: hospice enrollment in the last 3 days; chemotherapy use in the last 14 days; urgent care center (UCC) visits or ICU admissions within the last 30 days; and inpatient deaths. Bivariate analyses examined associations between religious identification and EOL care metrics. In 2020, we prospectively conducted semi-structured qualitative interviews to explore EOL care preferences among DR patients with cancer at this hospital. Data were coded and analyzed independently and iteratively by two investigators, and themes were identified. Results: Among 28711 patients (99% NDR), DR patients had significantly higher rates of EOL care utilization on every measure (Table). Only 41% of DR patients had ≥ 1 chaplaincy visit. Twenty-two patients (91% Hindu, 9% Sikh) and 11 NDR chaplains were interviewed. Few patients felt religion influenced their preferences for CPR and intubation. Some patients felt uncomfortable discussing EOL practices with their care team, and several chaplains acknowledged lacking knowledge in EOL practices. To improve EOL care for DR patients, chaplains suggested improving chaplaincy training and developing relationships with community-based leaders and volunteers. Conclusions: While DR patients had higher EOL care utilization, most did not report religion influenced their EOL care preferences. Chaplains’ unfamiliarity with DR-specific EOL practices was identified as a barrier. Future work to optimize EOL care for DR patients should improve chaplaincy training and access to faith-concordant spiritual care providers.[Table: see text]

Quality of end-of-life care for women diagnosed with metastatic breast cancer.

238 Background: Metastatic breast cancer (MBC) is a progressive, non-curative disease, with multiple therapy options. The toxicities and side effects from these therapies, as well as the signs and symptoms of advancing cancer, can cause patient and family related distress. To address these end-of-life (EOL) care needs, standards of care were established and recommendations provided. However, it is not clear if these standards are comprehensive in describing current MBC populations and their EOL experiences. Methods: This study used a sequential quantitative-qualitative mixed methods design to examine the quality of EOL care. The deceased patient’s designated personal representative (DPR) completed the Quality of Death and Dying (QODD) survey, with a subsequent/optional telephone interview. Results: The DPRs were predominately male (n=18; 72%), white (n=23; 92%), had some college education or more (n=24; 96%), and was the spouse/partner (n=16; 64%). The range in age was 25-95 years (SD 14.51), with the length of relationship varying between 7-63 years (SD 14.38). In the QODD survey (N=25), 40% (n=10), rated the overall quality of their loved one’s dying experience as ‘poor’ (score 0-4), yet 60% (n=15) rated the care they received from their healthcare team as ‘excellent.’ During the interview (N=16), the DPR was then asked to explore what made or what would have made for high quality EOL care. Four major categories emerged: resilience in response to transitions of care and adaptations to lifestyle changes; communication between healthcare providers and the patient/DPR in both content quality and delivery style; perceived support from the healthcare team, family, or spiritual advisors, specifically during changes in treatment goals; and knowledge as it relates to past experiences, when it was perceived as missing, or lack the knowledge regarding how to gather new information. Conclusions: The care needs for both the patient and DPR dynamically evolve throughout an MBC diagnosis and treatment. While resilience, communication, support, and knowledge all play a key role in the perception of the DPR regarding the quality of death experienced by their loved one, it is important to note that these experiences took place well before the EOL occurred and should be considered at the start of MBC treatment.

“I didn’t know it was going to be like this.”: unprepared for end-of-Life care, the experiences of care aides care in long-term care

BackgroundCare aides provide up to 70–90% of the direct care for residents in long-term care (LTC) and thus hold great potential in improving residents’ quality of life and end-of-life (EoL) care experiences. Although the scope and necessity of the care aide role is predicted to increase in the future, there is a lack of understanding around their perceptions and experiences of delivering EoL care in LTC settings. The aim of this study was to gain an understanding of the perspectives, experiences, and working conditions of care aides delivering end-of-life care in LTC in a rural setting, within a high-income country.MethodsData were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 h) with 31 care aides; and observation (170 h). Data were analysed using Reflexive Thematic Analysis.ResultsTwo themes were identified: (i) the emotional toll that delivering this care takes on the care aids and; (ii) the need for healing and support among this workforce. Findings show that the vast majority of care aides reported feeling unprepared for the delivery of the complex care work required for good EoL care. Findings indicate that there are no adequate resources available for care aides’ to support the mental and emotional aspects of their role in the delivery of EoL care in LTC. Participants shared unique stories of their own self-care traditions to support their grief, processing and emotional healing.ConclusionsTo facilitate the health and well-being of this essential workforce internationally, care aides need to have appropriate training and preparation for the complex care work required for good EoL care. It is essential that mechanisms in LTC become mandatory to support care aides’ mental health and emotional well-being in this role. Implications for practice highlight the need for greater care and attention played on the part of the educational settings during their selection and acceptance process to train care aides to ensure they have previous experience and societal awareness of what care in LTC settings entails, especially regarding EoL experiences.

End-of-life experiences in the dying process: scoping and mixed-methods systematic review

ObjectivesTo identify the current state of understanding about end-of-life experiences (ELEs) and examine evidence concerning prevalence, the impact on the process of dying and the perceptions/explanations of patients, relatives and...

The impact of patient age on palliative care utilization and end-of-life outcomes among patients with metastatic breast cancer.

12034 Background: Among patients with advanced cancer, palliative care (PC) utilization is frequently associated with improved quality of life, less aggressive end of life (EOL) measures, and hospice enrollment at the time of death. While older age is often associated with less PC utilization. The interplay between patient age, site and timing of PC with resultant EOL trends is not well understood. We aimed to assess these variations within a single institution’s metastatic breast cancer (mBC) population. Methods: An IRB approved retrospective study was conducted. All adult, decedent, mBC patients from 2011-2022 were analyzed. Manual chart review extracted demographic and clinical data related to diagnosis, treatment, PC utilization and death. The relationship of patient age with PC utilization (including setting and timing), aggressive EOL measures, hospice care at the time of death, and hospice duration were evaluated. Univariate analyses were conducted and factors with a significance level p &lt; 0.15 were further evaluated on multivariable logistic regression. Results: 278 decedent mBC patients met inclusion criteria. Any form of PC interaction from date of metastatic diagnosis to date of death, and utilizing outpatient (OP) PC (i.e., only OP or OP + inpatient (IP)) during the last year of life were significantly associated with hospice enrollment at the time of death. Similarly, utilizing only OP PC (i.e., no IP) was significantly associated with a longer time on hospice care. There was a trend toward shorter hospice durations in mBC patients who received only IP PC, and patients who received any IP PC or had their first PC interaction &lt; 4 months prior to the time of death were more likely to experience ≥ 1 aggressive EOL measure. Young adults (&lt; 40) were significantly more likely to receive some form of PC throughout their disease course, with a trend toward receiving only IP PC. While no significant relationships were identified between age and EOL factors, there were trends toward young and middle-aged adults (40-64) receiving ≥ 1 aggressive EOL measure and less time on hospice compared to older adults (≥ 65). Conclusions: This study gives important insight into a breast cancer-specific female population. Results highlight the importance of PC, especially in the OP setting, and its effect on hospice enrollment prior to death. However, there appears to be an interesting dichotomy between young adults receiving more PC and worse EOL experiences compared to older adults receiving less PC and better EOL experiences. These results should guide and promote, early OP focused PC specifically for young and middle-aged adults to help improve challenging EOL transitions. [Table: see text]

The impact of adverse financial events on healthcare utilization and treatment costs at the end of life.

6517 Background: Patients with cancer are at higher risk of bankruptcy and other adverse financial events (AFEs) compared to similar individuals without cancer. However, little is known about how AFEs affect cancer care, particularly at the end of life (EOL). We investigated the association between AFEs, healthcare utilization, and healthcare costs at the EOL among patients with cancer. Methods: Western Washington Surveillance Epidemiology and End Results (SEER) cancer registry cases were linked to credit records from TransUnion and to claims from commercial payers and Medicare. Patients with AJCC Stage I-IV solid tumors who died between January 2013 and December 2019 and who had continuous enrollment in commercial or Medicare insurance for the 6 months prior to death were included. Emergency department (ED) and inpatient (IP) visits in the last 3 months of life, place of death, and mean healthcare costs per patient (paid by insurer) were compared between patients with versus without AFEs (charge-offs, third-party collections, tax liens, delinquent mortgage payments, foreclosures, or repossessions). A multivariate logistic regression analysis was used to evaluate the association between AFEs, ED or IP visits (&gt;1 of either), and inpatient death, adjusting for sociodemographic factors, comorbidities, payer type, and cancer stage. Two-sample t tests were used to compare mean per-patient costs in the last 6 and 3 months of life among patients with versus without an AFE. Results: A total of 13,545 patients (median age 75, 54% male) were included, of which 15.6% experienced an AFE. Patients with AFEs were more likely to have multiple ED or IP visits (OR 1.19, CI 1.07-1.34) and die in a hospital (OR 1.37, CI 1.22-1.55) (Table). Younger age, higher Carlson Comorbidity Index (CCI), and being partnered were also associated with greater EOL healthcare utilization while race, sex, payer type, and cancer stage were not. Mean total healthcare costs were higher in patients with AFEs than those without in the last 6 months ($66,232, vs. $55,831, p&lt;0.0001) and 3 months ($39,664 vs. $33,638, p&lt;0.0001) of life. Conclusions: We demonstrated an independent association between AFEs as measured in credit records, increased EOL healthcare utilization, and greater per-patient costs in the months before death. These findings suggest that addressing patient financial hardship could improve their EOL experience and decrease healthcare costs. [Table: see text]

Experiences of Dying Animals: Parallels With End-Of-Life Experiences in Humans

There has recently been an increased interest in end-of-life experiences (ELEs) in humans,but ELEs in non-human animals have not yet been assessed. In this paper, wepresent findings from a study we performed to collect and analyze reports about remarkablebehavioral aspects of animals during their last phase of life. After publicappeals in which we asked for reports about ELEs in animals, we received numerousresponses from pet owners. We were able to group these experiences into specificcategories, which we termed the last goodbyes, last visits, last rally, retreating into solitude,unusual premonitions of death, somatic surprises, terminal lucidity in animals, andpotential near-death visions in animals. We present 43 case reports pertaining to thesedifferent categories. Many of them show striking similarities to remarkable behavior reportedby dying people. This similarity between animal and human ELEs might be a signof a common physiology underpinning such experiences and could also increase therecognition that animals share an inner life similar to that of humans during all phasesof life. This could lead to a more respectful treatment of pets, as well as of animals infarms, zoos, and in the wild. However, as our study was of a preliminary character andonly the first of its kind, we encourage further systematic research in this field. In theSupplementary Material, we publish 71 additional cases for those who would like tostudy more examples.

End-of-Life Experiences Among "Kinless" Older Adults: A Nationwide Register-Based Study.

Background: The population of older adults who are unpartnered and childless (i.e., "kinless") is increasing across the globe, and may be at risk for lower quality end-of-life (EoL) experiences due to lack of family support, assistance, and advocacy. Yet, little research exists on the EoL experiences of "kinless" older adults. Objectives: To document associations between family structure (i.e., presence or absence of partner or child) and intensity of EoL experiences (i.e., visits to medicalized settings before death). Design: The study design is a cross-sectional population-based register study of the population of Denmark. Subjects: Participants include all adults age 60 years and older who died of natural causes in Denmark from 2009 to 2016 (n = 137,599 decedents). Results: "Kinless" older adults (reference = has partner, has child) were the least likely group to visit the hospital (two or more times; odds ratio [OR] = 0.74, confidence interval [CI] = 0.70-0.77), emergency department (one or more times; OR = 0.90, CI = 0.86-0.93), and intensive care unit (one or more times; OR = 0.71, CI = 0.67-0.75) before death. Conclusions: "Kinless" older adults in Denmark were less likely to experience medically intensive care at the EoL. Further research is needed to understand factors associated with this pattern to ensure that all individuals receive high quality EoL care regardless of their family structure and family tie availability.

Nurses’ Experience of End of Life Care in a New Infectious Disease Crisis: A Qualitative Thematic Analysis

This study aims to explore and understand nurses’ end of life experiences during care for critical COVID-19 patients. In-depth interviews were conducted with 11 nurses working at a dedicated COVID-19 hospital in ‘D’ Metropolitan City. The 11 nurses all had experience in end of life care for critical COVID-19 patients. Collected data was examined using qualitative thematic analysis. The results showed the four categories were: trauma from end of life care, overwhelming nursing responsibilities for critical COVID-19 patients, role as guardians and supporters of critical COVID-19 patients, growth of professional identity and professional competency as a nurse. An inadequate infectious disease management system burdened nursing practitioners with many responsibilities during the early stages of the pandemic. However, This experience gave nurses an opportunity to re-think the value of caring and re-establish their professional identity. Institutional support and social interest are required to improve the quality of end of life care and work processes and provide psychological support and recovery for nursing practitioners.