Critical considerations of space and place at the end of life have been limited in the social science literature. To address this gap, we draw on empirical data from two interrelated but separate qualitative Australian data sets to critically examine dying in relation to considerations of space, place and affect. These studies share the primary aim to better understand and articulate end-of-life experiences, with one using video reflexive ethnography and the other semi-structured interviews with patients. Challenging the broader valorisation of particular places of dying and death (e.g. home, hospice, hospital), we critically explore the meanings and affects of space and place and how they are rooted in normative expectations. Drawing on participant accounts we interrogate simplistic concepts of home versus hospice, or hospital versus community, developing a critical social science of the intersections of space and place at the end of life.
Purpose: Visitor restrictions during the COVID-19 pandemic limit in-person family meetings for hospitalized patients. We aimed to evaluate the quantity of family meetings by telephone, video and in-person during the COVID-19 pandemic by manual chart review. Secondary outcomes included rate of change in patient goals of care between video and in-person meetings, the timing of family meetings, and variability in meetings by race and ethnicity.
Methods: A retrospective cohort study evaluated patients admitted to the intensive care unit at an urban academic hospital between March and June 2020. Patients lacking decision-making capacity and receiving a referral for a video meeting were included in this study.
Results: Most patients meeting inclusion criteria (N = 61/481, 13%) had COVID-19 pneumonia (n = 57/61, 93%). A total of 650 documented family meetings occurred. Few occurred in-person (n = 70/650, 11%) or discussed goals of care (n = 233/650, 36%). For meetings discussing goals of care, changes in patient goals of care occurred more often for in-person meetings rather than by video (36% vs. 11%, p = 0.0006). The average time to the first goals of care family meeting was 11.4 days from admission. More documented telephone meetings per admission were observed for White (10.5, SD 9.5) and Black/African-American (7.1, SD 6.6) patients compared to Hispanic or Latino patients (4.9, SD 4.9) (p = 0.02).
Conclusions: During this period of strict visitor restrictions, few family meetings occurred in-person. Statistically significant fewer changes in patient goals of care occurred following video meetings compared to in-person meetings, providing support limiting in-person meetings may affect patient care.
Ce récit documente comment des malades sont morts en FaceTime pendant l’épidémie de Covid. À partir d’une enquête de terrain que j’ai commencée en janvier 2020 dans le service de réanimation d’un hôpital de la côte Ouest des États-Unis, je raconte l’apparition de la Covid-19, la séparation des malades de leurs familles, la mort vécue sur l’écran des téléphones mobiles, ainsi que les différentes façons d’agir des soignants face à cette situation que, tous, s’accordèrent à trouver « horrible ».
With increased therapeutic capabilities in healthcare today, many patients with multiple progressive comorbidities are living longer. They experience recurrent hospitalizations and often undergo procedures that are not aligned with their personal goals. That is why it is essential to discuss and document healthcare preferences prior to an acute event when significant interventions could occur, especially for patients with serious and progressive illness. Completion of an advance directive and a physician order for life-sustaining treatment (POLST) supports provision of goal-concordant care. Further, for patients who have do not attempt resuscitation (DNAR) orders or are diagnosed with advanced dementia, having a POLST is essential. This may be best accomplished with hospitalization discharge plans. Our 896-bed academic medical center, Cedars-Sinai Medical Center, launched a quality initiative in 2015 to complete POLSTs for patients being discharged with DNAR status or with dementia returning to a skilled nursing facility. As part of interdisciplinary progression of care rounds, emphasis was placed on those patients for whom POLST completion was indicated. Proactive, facilitated discussions with patients, family members, and attending physicians were initiated to support POLST completion. The completed forms were then uploaded to the electronic health record. Individual units and physicians received regular feedback on POLST completion rates, and the data were later shared at medical staff quality improvement meetings.During the initiative, POLST completion rates for DNAR patients discharged alive rose from 41% in fiscal year (FY) 2014 to 75% in FY 2019. Similar improvement was seen for patients with dementia discharged to skilled nursing facilities, regardless of code status (rising from 14% in FY 2014 to 54% in FY 2019). Subsequently, we have expanded our efforts to include early discussion and completion of these advanced care planning documents for patients recently diagnosed with high mortality cancers (ovarian, pancreatic, lung, glioblastoma), focusing on the completion of advanced care planning documentation and palliative care referrals.
Objective: To increase earlier access to palliative care, and in turn increase documented goals of care and appropriate hospice referrals for seriously ill patients admitted to hospital medicine.
Background: Due to the growing number of patients with serious illness and the specialty palliative care workforce shortage, innovative primary palliative care models are essential to meet this population's needs.
Methods: Patients with serious illness admitted to hospital medicine at a quaternary urban academic medical center in New York City and received an embedded palliative care social worker consultation in 2017. We used univariate analyses of sociodemographic, clinical, and utilization data to describe the sample.
Results: Overall, 232 patients received a primary palliative care consultation (mean age of 69 years, 44.8% female, 34% white, median Karnofsky Performance Status of 40%), and 159 (69%) had capacity to participate in a goals-of -are conversation. Referrals were from palliative care solid tumor oncology trigger program (113 [49%]), specialty palliative care consultation team (42[18%]), and hospital medicine (34[14.6%]). Before the consultation, 10(4.3%) had documented goals of care and 207 (89%) did after the consultation. The percentage of those referred to hospice was 24.1%. Of those transferred to specialty palliative care consultation service, nearly half required symptom management.
Discussion: Patients who received a primary palliative care consultation were seen earlier in their illness trajectory, based on their higher functional impairment, and the majority had capacity to participate in goals-of-care discussions, compared with those who were seen by specialty palliative care. The consultation increased goals-of-care documentation and the hospice referral rate was comparable with that of the specialty palliative consultation team.
Background: End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting.
Aim: The purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease.
Methods: This study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents’ thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting.
Results: This study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients’ everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries.
Conclusion: The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.
BACKGROUND: Place of death is important to patients and caregivers, and often a surrogate measure of health care disparities. While recent trends in place of death suggest an increased frequency of dying at home, data is largely unknown for older adults with cancer.
METHODS: Deidentified death certificate data were obtained via the National Center for Health Statistics. All lung, colon, prostate, breast, and pancreas cancer deaths for older adults (defined as >65 years of age) from 2003 to 2017 were included. Multinomial logistic regression was used to test for differences in place of death associated with sociodemographic variables.
RESULTS: From 2003 through 2017, a total of 3,182,707 older adults died from lung, colon, breast, prostate and pancreas cancer. During this time, hospital and nursing home deaths decreased, and the rate of home and hospice facility deaths increased (all p < 0.001). In multivariable regression, all assessed variables were found to be associated with place of death. Overall, older age was associated with increased risk of nursing facility death versus home death. Black patients were more likely to experience hospital death (OR 1.7) and Hispanic ethnicity had lower odds of death in a nursing facility (OR 0.55). Since 2003, deaths in hospice facilities rapidly increased by 15%.
CONCLUSION: Hospital and nursing facility cancer deaths among older adults with cancer decreased since 2003, while deaths at home and hospice facilities increased. Differences in place of death were noted for non-white patients and older adults of advanced age.
OBJECTIVE: To identify actions required to strengthen the delivery of person and family centred hospital-based palliative care so that it addressed the domains of care identified as important for inpatients with palliative care needs and their families.
METHODS: A codesign study involving a workshop with palliative care and acute hospital policy, consumer and clinical representatives in Australia. A modified nominal group process generated a series of actions, which were thematically analysed and refined, before being circulated to participants to gain consensus.
RESULTS: More than half (n=30, 58%) of the invited representatives (n=52) participated in the codesign process. Nine actions were identified as required to strengthen inpatient palliative care provision being: (a) evidence-informed practice and national benchmarking; (b) funding reforms; (c) securing executive level support; (d) mandatory clinical and ancillary education; (e) fostering greater community awareness; (f) policy reviews of care of the dying; (g) better integration of advance care planning; (h) strengthen nursing leadership; and (i) develop communities of practice for improving palliative care.
CONCLUSIONS: Changes to policy, practice, education and further research are required to optimise palliative care within hospital settings, in accordance with the domains inpatients with palliative care needs and their families consider to be important. Achieving these changes will require a whole of sector approach and significant national and jurisdictional leadership.
Context: The development of palliative care services is a public health priority. The Japanese Cancer Control Act has been promoting palliative care services nationwide for over 10 years.
Objectives: To evaluate long-term changes in the structure and processes of hospital palliative cancer care services nationwide.
Methods: This was an observational study using three representative questionnaire surveys between 2008 and 2018. The questionnaire consisted of domains on the structure and process regarding hospital palliative cancer care services. The changes over time were assessed using the MacNemar test. The differences between groups, namely community hospitals and designated cancer hospitals, were determined using 2 tests.
Results: We analyzed changes over time from 281 designated cancer hospitals and compared the services between 1395 community hospitals and 380 designated cancer hospitals. The development of the structure and processes for designated cancer hospital's palliative cancer care services was greater for 10 years including the number of Palliative Care Consultation Teams (PCTs) with more than 50 patient referrals annually (from 2010 to 2018: 76.2% to 85.4%, P < 0.001). The palliative cancer care services of community hospitals were poorly prepared compared with designated cancer hospitals in 2018, such as the “direct medical care by any member of the Palliative Care Consultation Team at least 3 times a week (41.7% vs. 81.3%; P < 0.001).
Conclusion: Hospital palliative cancer care services in designated cancer hospitals have developed significantly from 2008 to 2018. Building a system to promote palliative care services in community hospitals is a challenge for the next decade.
De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
Background: In the United States, the percentage of hospitals over 50 beds with palliative care programs has risen substantially from 7% of hospitals in 2001 to 72% in 2017. Yet the dynamic nature of program adoption and closure over time is not known.
Objective: To examine the rate of palliative care program adoption and closure and associated hospital and geographic characteristics in a national sample of U.S. hospitals.
Design: Adoption and closure rates were calculated for 3696 U.S. hospitals between 2009 and 2017. We used multivariable logistic regression models to examine the association between adoption and closure status and hospital, geographic, and community characteristics.
Setting/Subjects: All nonfederal general medical and surgical, cancer, heart, and obstetric or gynecological hospitals, of all sizes, in the United States in operation in both 2009 and 2017.
Results: By 2017, 34.9% (812/2327) of the hospitals without palliative care in 2009 had adopted palliative care programs, and 15.0% (205/1369) of the hospitals with programs had closed them. In multivariable models, hospitals in metropolitan areas, nonprofit and public hospitals (compared to for-profit hospitals), and those with residency training approval by the Accreditation Council for Graduate Medical Education were significantly more likely to adopt and significantly less likely to close palliative care programs during the study period.
Conclusions: This study indicates that palliative care is not equitably adopted nor sustained by hospitals in the United States. Federal and state interventions may be required to ensure that high-quality care is available to our nation's sickest patients.
Le groupe éthique de l’hôpital de Vienne existe depuis plusieurs années. Il se réunit une fois par trimestre pour accueillir et soutenir la réflexion d’équipes de soins. Son objectif est avant tout d’accompagner un cheminement, sans chercher un avis délibératif. Il est composé d’une quinzaine de membres permanents, soignants, cadres de santé, médecins, philosophe, juriste, représentante d’usager. Pour chaque rencontre, un thème est établi après un contact avec un ou des professionnels de l’établissement ayant manifesté un questionnement formalisé ou au détour d’échanges dans l’hôpital. Ils sont alors invités à venir simplement présenter la problématique concrète, ouvrant ensuite une discussion pluridisciplinaire. Ces échanges sont censés ouvrir des pistes de réflexion pour soutenir une démarche qui, idéalement, va se poursuivre ultérieurement sur le terrain.
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BACKGROUND: Palliative care (PC) has been shown to improve outcomes for individuals at the end of life. Despite this, many Canadians do not receive PC prior to death. The present study examines the receipt of inpatient PC and its association with location of death, as well as with admission to intensive care units (ICUs) and use of alternate level of care (ALC) beds in hospital in the last 30 days of life.
DATA AND METHODS: The study sample is a retrospective cohort of adult Canadians (aged 19 and older) who died between April 1, 2010, and December 31, 2014. Deaths were ascertained from the Canadian Vital Statistics Database and linked to hospitalizations records in the Discharge Abstract Database to identify the receipt of inpatient PC.
RESULTS: More than half (57.7%) of Canadian adults died in hospital, with only 12.6% receiving any inpatient PC in the year prior to death, and 1.7% receiving a preterminal PC designation (i.e., PC initiated prior to the last 30 days of life). In the adjusted analyses, receipt of any inpatient PC was associated with a higher likelihood of death in hospital but lower odds of ICU admission. Pre-terminal PC was associated with lower odds of death in hospital, ICU admission and ALC bed use.
DISCUSSION: This study offers new insights into the association between inpatient PC and outcomes at the end of life among Canadians. Future studies could expand on these observations to further understanding of the role of inpatient PC in the end-of-life experience for different populations in Canada.
CONTEXT: Although the COVID-19 pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care.
OBJECTIVES: The objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths due to COVID-19 compared to a reference cohort from 2019, and whether they differed between nursing homes and hospitals.
METHODS: Data about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March-May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort, and between the nursing home and hospital COVID-19 deaths.
RESULTS: 1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared to the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had had a specialised palliative care team consultation (p < .0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes - 18%, hospitals - 100%).
CONCLUSION: This national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.
Lauren Oliver, formerly Clinical Nurse Advisor, NHS Nightingale North West, outlines the challenges faced by staff in providing good-quality end-of-life care for patients in a temporary hospital during the initial peak of the COVID-19 pandemic.
OBJECTIVE: The aim of this project was to assess the value for money of a modified unit within a residential aged care facility (RACF) for people requiring palliative care at the end of life.
METHODS: A three-way comparison using a mixed-method costing was used to estimate the per day cost of the unit compared to care in a palliative care unit within a hospital and a standard RACF bed.
RESULTS: The cost of the unit was estimated at $242 per day (2015 Australian dollars). The palliative care hospital bed cost $1,664 per day. The cost of a standard RACF bed was $123 per day, indicating that an additional $120 per day is required to provide the higher level of care required by people with complex palliative care needs.
CONCLUSION: A modified RACF unit could provide substantial cost savings to the health budget for selected complex palliative care patients.
Objective: The aim of this study was to assess the clinical, economic and personal impacts of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service (SanCPCS)
Methods: Parallel economic analysis of usual care was conducted prospectively with patients from the enhanced SanCPCS. A convenient retrospective sample from the initial service was used to determine the impact of the enhanced service on patient care. A time series survey was used with patients and carers from within the expanded service group in order to measure patient outcomes and values as they approached death. Results: Patients of the SanCPCS were less likely to die in hospital and had fewer hospital admissions. In addition, the service halved the estimated hospitalisation cost per patient, but the length of hospital stay was not affected by the service. The SanCPCS was more beneficial for women in terms of fewer hospital admissions and lower costs. Patients’ choices regarding place of care and death and what was ‘important’ to them changed over time. For instance, patients tended to prefer being at home as they approached death, and being pain free doubled in importance.
Conclusions: Nurse practitioner-led community palliative care services have the potential to result in significant economic and personal benefits for patients and their families in need of such care. What is known about the topic? National trends show an emphasis on community services with the aim of promoting and supporting the choice of dying at home, and this coincides with drives to reduce hospital costs and length of stay. Community-based palliative care services may offer substantial economic and clinical benefits. What does this paper add? The SanCPCS was the first nurse practitioner-led community-based palliative care service in Australia. The expansion of this service led to significantly fewer admissions and deaths in hospital, and halved the estimated hospitalisation cost per patient. What are implications for practitioners? Nurse practitioner-led models for care in the out-patient or community setting are a logical direction for palliative services through the engagement of specialised providers uniquely trained to support, nurture, guide and educate patients and their carers.
Objectives: Despite a number of studies on effectiveness of palliative care, there is a lack of complex updated review of the impact of in-hospital palliative care consult service. The objective is to update information on the impact of palliative care consult service in inpatient hospital setting.
Methods: This study was a systematic literature review, following the standard protocols (Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Joanna Briggs Institute tools) to ensure the transparent and robust review procedure. The effect of palliative care consult service was classified as being associated with improvement, no difference, deterioration or mixed results in specific outcomes. PubMed, Scopus, Academic Search Ultimate and SocINDEX were systematically searched up to February 2020. Studies were included if they focused on the impact of palliative care consult service caring for adult palliative care patients and their families in inpatient hospital setting.
Results: After removing duplicates, 959 citations were screened of which 49 full-text articles were retained. A total of 28 different outcome variables were extracted. 18 of them showed positive effects within patient, family, staff and healthcare system domains. No difference was observed in patient survival and depression. Inconclusive results represented patient social support and staff satisfaction with care.
Conclusions: Palliative care consult service has a number of positive effects for patients, families, staff and healthcare system. More research is needed on factors such as patient spiritual well-being, social support, performance, family understanding of patient diagnosis or staff stress.
CONTEXT: Improving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal.
OBJECTIVES: To determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients.
METHODS: Retrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013-2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family-reported "excellent" EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation (PCC), receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit (ICU) death.
RESULTS: Of 6,256 patients, mean age was 77.4 (standard deviation=11.1), 98.3% were male, 75.7% white and 18.2% were black. Median hospital scores of "excellent" EOLC ranged from 41.3% (Interquartile range (IQR) 37.0-44.8%) in the lowest quintile to 76.4% (IQR 72.9-80.3%) in the highest. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly though not significantly more likely to receive a PCC (adjusted proportions 57.6% vs. 51.2%; p=0.32); but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%) and hospice (59.7% vs. 35.9%) and were less likely to die in the ICU (15.9% vs. 31.0%; p<0.05 for all).
CONCLUSION: Patients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best-practices in EOLC across healthcare systems.
BACKGROUND: The general in-hospital mortality and interrelationship with delirium are vastly understudied. Therefore, this study aimed to assess the rates of in-hospital mortality and terminal delirium.
METHOD: In this prospective cohort study of 28,860 patients from 37 services including 718 in-hospital deaths, mortality rates and prevalence of terminal delirium were determined with simple logistic regressions and their respective odds ratios (ORs).
RESULTS: Although overall in-hospital mortality was low (2.5%), substantial variance between services became apparent: Across intensive care services the rate was 10.8% with a 5.8-fold increased risk, across medical services rates were 4.4% and 2.4-fold, whereas at the opposite end, across surgical services rates were 0.7% and 87% reduction, respectively. The highest in-hospital mortality rate occurred on the palliative care services (27.3%, OR 19.45). The general prevalence of terminal delirium was 90.7% and ranged from 83.2% to 100%. Only across intensive care services (98.1%, OR 7.48), specifically medical intensive care (98.1%, OR 7.48) and regular medical services (95.8%, OR 4.12) rates of terminal delirium were increased. In contrast, across medical services (86.4%, OR 0.32) and in particular oncology (73.9%, OR 0.25), pulmonology (72%, OR 0.31) and cardiology (63.2%, OR 0.4) rates were decreased. For the remaining services, rates of terminal delirium were the same.
SIGNIFICANCE OF RESULTS: Although in-hospital mortality was low, the interrelationship with delirium was vast: most patients were delirious at the end of life. The implications of terminal delirium merit further studies.