Doris, une infirmière qui travaille en unité de soins palliatifs à Fréjus, se sépare de son époux et quitte son emploi ainsi que son domicile à la suite d'une rencontre amoureuse. Sa quête personnelle et sensuelle se construit au contact de la mort.
Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
Objectives: The aim of this work is to describe the multidisciplinary model of intervention applied and the characteristics of some COVID-19 patients assisted by the hospital palliative care unit (UCP-H) of an Italian hospital in Lombardy, the Italian region most affected by the COVID-19 pandemic.
Methods: A retrospective study was conducted on patients admitted to the A. Manzoni Hospital (Lecco, Lombardy Region, Italy) and referred to the UCP-H between 11 March 2020 and 18 April 2020, the period of maximum spread of COVID-19 in this area. Data were collected on the type of hospitalisation, triage process, modality of palliative care and psychological support provided.
Results: 146 COVID-10 patients were referred to the UCP-H. Of these, 120 died during the observation time (82%) while 15 (10.2%) improved and were discharged from the UCP-H care. 93 had less favourable characteristics (rapid deterioration of respiratory function, old age, multiple comorbidities) and an intensive clinical approach was considered contraindicated, while 48 patients had more favourable presentations. Mean follow-up was 4.8 days. A mean of 4.3 assessments per patient were performed. As to respiratory support, 94 patients were treated with oxygen only (at different volumes) and 45 with Continuous Positive Airway Pressure (CPAP).
Conclusion: The ongoing pandemic highlighted the need for dedicated palliative care teams and units for dying patients. This work highlights how palliative medicine specialist can make a fundamental contribution thanks to their ability and work experience in an organised multiprofessional context.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
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.
Despite improvement in the care of patients with end-stage liver disease (ESLD), mortality is rising. In the United States, patients are increasingly choosing to die at hospice and home, but data in patients with ESLD are lacking. Therefore, this study aimed to describe trends in location of death in patients with ESLD. We conducted a retrospective cross-sectional analysis using the Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research from 2003-2018. Death location was categorized as hospice, home, inpatient, nursing home, or other. Comparisons were made between gender, age, ethnicity, race, region, and with other causes of death. Comparisons were also made between rates of change (calculated as annual percent change), proportion of deaths in 2018, and with multivariable logistic regression. 535,261 deaths were attributed to ESLD - most were male, non-Hispanic, and White. The proportion of deaths at hospice and home increased over the study period from 0.2% to 10.6% and 20.3% to 25.7%, respectively. Whites had the highest proportion of deaths in hospice and home. In multivariable analysis, elderly patients were more likely to die in hospice or home (OR 1.20 CI 1.07-1.35), while black patients were less likely (OR 0.58 CI 0.46-0.73). Compared to other causes of death, ESLD had the second highest proportion of deaths in hospice but lagged behind non-hepatocellular carcinoma malignancy.
CONCLUSION: Deaths in patients with ESLD are increasingly common at hospice and home overall, and while the rates have been increasing among black patients, they are still less likely to die at hospice or home. Efforts to improve this disparity, promote end-of-life care planning, and enhance access to death at hospice and home are needed.
Patients with advanced cancer and their families frequently encounter clinical and logistical challenges related to end-of-life care. Hospice provides interdisciplinary and holistic care to meet patients' biomedical, psychosocial, and spiritual needs in the last phases of life. Despite increasing general acceptance and use among patients with cancer, hospice remains underused. Underuse stems from ongoing misconceptions regarding hospice and its purpose, coupled with the rapid development of novel anticancer treatments, such as immunotherapies and targeted therapies, that have changed the landscape of possibilities. Furthermore, rapid evolutions in how end-of-life care is structured and reimbursed for will affect how oncology patients will intersect with hospice care. In this review, we explore the current and future challenges to greater integration of hospice care in the care of patients with advanced cancer and propose five recommendations as part of the path forward.
OBJECTIVE: To examine transitions out of prognostic talk in interactions between clinicians and the relatives and friends of imminently dying hospice patients.
METHODS: Conversation analysis of 20 conversations between specialist palliative care clinicians and the families of imminently dying patients in a hospice.
RESULTS: Following the provision and acknowledgement of a prognostic estimate, clinicians were able to transition gradually towards making assurances about actions that could be taken to ensure patient comfort. When families raised concerns or questions, this transition sequence was extended. Clinicians addressed these questions or concerns and then pivoted to action-oriented talk, most often relating to patient comfort.
CONCLUSION: In conversations at the end of life, families and clinicians used practices to transition from the uncertainty of prognosis to more certain, controllable topics including comfort care.
PRACTICE IMPLICATIONS: In a context in which there is a great deal of uncertainty, transitioning towards talk on comfort care can emphasise action and the continued care of the patient and their family.
Purpose: Little is known about the use of palliative and hospice care and their impact on healthcare utilization near the end of life (EOL) in early-onset pancreatic cancer (EOPC).
Methods: Patients with EOPC (= 50 years) were identified using the institutional tumor registry for years 2011–2018, and demographic, clinical, and rates of referral to palliative and hospice services were obtained retrospectively. Predictors of healthcare utilization, defined as use of = 1 emergency department (ED) visit or hospitalization within 30 days of death, place of death (non-hospital vs. hospital), and time from last chemotherapy administration prior to death, were assessed using descriptive, univariable, and multivariable analyses including chi-square and logistic regression models.
Results: A total of 112 patients with EOPC with a median age of 46 years (range, 29–50) were studied. Forty-four percent were female, 28% were Black, and 45% had metastatic disease. Fifty-seven percent received palliative care at a median of 7.8 weeks (range 0–265) following diagnosis. The median time between last chemotherapy and death was 7.9 weeks (range 0–102). Seventy-four percent used hospice services prior to death for a median of 15 days (range 0–241). Rate of healthcare utilization at the EOL was 74% in the overall population. Black race and late use of chemotherapy were independently associated with increase in ED visits/hospitalization and hospital place of death.
Conclusions: Although we observed early referrals to palliative care among patients with newly diagnosed EOPC, short duration of hospice enrollment and rates of healthcare utilization prior to death were substantial.
OBJECTIVES: Assess whether frequently-used claims-based end-o-life (EOL) measures are associated with higher ratings of care quality.
DESIGN: Retrospective cohort study.
SETTING/PARTICIPANTS: Deceased fee--for-service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after-death survey (n = 2,559).
MEASUREMENTS: We examined claims-based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of “excellent” care in the last month of life and reports that hospice care began “at the right time.” Associations were assessed with logistic regression, adjusted by patient characteristics.
RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference -10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference -8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference -10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1–2 days before death 60.2% vs hospice 7–13 days 74.9%; adjusted difference +14.7 percentage points).
CONCLUSIONS: Claims-based measures of EOL care for cancer patients that reflect avoidance of hospital-based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.
Objective: This report describes a pilot hospice inpatient unit dedicated to individuals experiencing distressing behaviors from dementia.
Background: Patients with dementia who experience distressing symptoms cannot be well managed on typical inpatient units. Hospice of the Valley selected one unit to dedicate to dementia care.
Methods: Data were analyzed from 237 patients admitted to the unit between May 2019 and April 2020. Behaviors were identified and rated for severity on admission, discharge, and postdischarge. Rates of inpatient death and associated behaviors were calculated.
Results: Fifty percent of patients had their behaviors sufficiently managed to allow discharge. The most common behavior exhibited was agitation; the most common symptom leading to death was pain.
Discussion: An inpatient hospice unit dedicated to patients with dementia can be successful. The hospice agency gains admissions that would otherwise be diverted to behavioral care settings. This successful pilot may be a model for other hospices.
Hospice care consists of palliative care provided at the end of life that provides comprehensive comfort care for patients and support for family members. This includes medical care, pain management, and emotional and spiritual support tailored to patient needs and wishes. Eligibility rules require a physician to determine that the prognosis for the patient involves an estimated life expectancy of 6 months or less if the illness runs its expected course. Family physicians can be key partners in helping patients and family members transition when hospice care best matches patient goals. Hospice care is delivered by an interdisciplinary team, including family physicians, physician medical directors, nurses, social workers, counselors, home health aides, and trained volunteers. Although most hospice care is delivered in the home of the patient, it also may be provided in long-term care facilities, hospice facilities, and in the hospital when needed for symptom control. Hospice care has been associated with better symptom relief, better achievement of patient end-of-life wishes, and higher overall rating of quality of end-of-life care compared with standard care. Family physicians have the ideal skills to manage and coordinate patient hospice care needs.
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.
One-quarter of annual Medicare expenses in the traditional program (non-Medicare Advantage) are expended for 5% of Medicare enrollees, with much of this expenditure occurring in the last year of life. Hospice use may reduce end-of-life costs. However, evidence has been inconclusive due to sample selection and differences in insurance coverage for hospice. Claims data for HIV-positive Californians enrolled in Medicare who died in the period 2008 to 2010 were used to examine the relationship between hospice use and costs in the last 6 months of life. Logit estimates related hospice use to sickness levels and demographics. Inpatient and outpatient costs were analyzed separately. Logit regressions examined hospitalization probability. Robust regressions were used to examine the determinants of conditional inpatient costs and non-inpatient costs. Bootstrapped post-estimates were then used to determine the marginal probability of costs for the sample by hospice use. Hospice users have greater disease burden and are less likely to be African American. Controlling for disease burden, hospice users would have non-inpatient costs that were $14 771 greater than hospice non-users, but inpatient costs that were $20 522 lower. Thus, hospice reduces costs on net. Hospice is chosen by patients with more comorbidities. Controlling for these comorbidities, hospice use is associated with lower inpatient costs, greater non-inpatient costs and reduced end-of-life costs.
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.
PURPOSE: End-of-life cancer care varies widely, and very few centers evaluate it systematically. Our objective was to assess indicators of the aggressiveness of end-of-life cancer care in clinical practice.
METHODS: An observational, longitudinal, and retrospective cohort study was conducted at a tertiary hospital. Eligible patients were at least 18 years old, had a solid tumor, were followed up by the Oncology Department, and had died because of cancer or associated complications during 2017. We used the criteria of Earle et al. (J Clin Oncol 21(6):1133-1138, 2003) to assess the aggressiveness of care. Multivariate logistic regression analyses were performed to characterize factors associated with aggressiveness of therapy.
RESULTS: The study population comprised 684 patients. Eighty-eight patients (12.9%) received anti-cancer treatment during the last 14 days of their lives, and 62 patients (9.1%) started a new treatment line in the last 30 days. During the last month of life, 102 patients (14.9%) visited the ER, 80 patients (11.7%) were hospitalized more than once, and 26 (3.8%) were admitted to the ICU. A total of 326 patients (47.7%) died in the acute care unit. A total of 417 patients (61.0%) were followed by the Palliative Care Unit, and in 54 cases (13.0%), this care started during the last 3 days of life.
CONCLUSIONS: The use of anti-cancer therapies and health care services in our clinical practice, except for the ICU, did not meet the Earle criteria for high-quality care. Concerning hospice care, more than half of the patients received hospice services before death, although in some cases, this care started close to the time of death.
Les unités de soins palliatifs françaises peuvent accueillir des patients en phase terminale de leur maladie, mais aussi des patients qui bénéficient encore de traitement spécifique pouvant stabiliser la maladie à long terme. Or, nous ignorons comment ces soins palliatifs, qui cohabitent avec des traitements spécifiques de la pathologie et pouvant stabiliser la maladie à plus ou moins long terme, se pratiquent par les médecins qui travaillent dans ces unités d’hospitalisation. Nous avons mené une étude qualitative avec des professionnels médicaux et paramédicaux d’une USP française afin de décrire la pratique médicale en unité de soins palliatifs. Quatre « focus-groups » ont été menés avec 3 professionnels médicaux et 4 avec 11 professionnels paramédicaux. Les compétences réflexive et analytique étaient prépondérantes dans le discours des interviewés. Si l’incertitude n’était pas expressément nommée dans notre étude, elle était présente dans chaque geste ou comportement visant à comprendre la singularité du patient. Cette étude originale contribue à comprendre comment sont mis en œuvre les soins palliatifs en situation d’incertitude médicale.
Introduction : Depuis la loi de 2016, des travaux ont porté sur la sédation dont la création de l’outil SEDAPALL. L’objectif de l’étude était de réaliser un état des lieux des pratiques sédatives en unités de soins palliatifs (USP). Une réflexion sur SEDAPALL comme une aide dans la pratique quotidienne a été proposée.
Matériel/Méthode : Il s’agissait d’une étude rétrospective, multicentrique. Était inclus tout patient ayant reçu une sédation à visée palliative en fin de vie entre le 1er mars et le 31 mai 2018 dans les USP de Rouen, Caen et Le Havre. Le recueil des données s’établissait après la lecture des dossiers des patients hospitalisés sur cette période et décédés.
Résultats : Nous avons recensé 34 sédations dont 56 % à l’USP de Rouen. Douze pour cent des patients avaient rédigés leurs directives anticipées (DA). Il existait une procédure collégiale avec l’induction d’une sédation dans 65 % des cas. La technique sédative la plus utilisée était l’introduction et majoration progressive d’une dose de fond de midazolam. Les sédations étaient, pour la majorité, induites dans les situations d’urgences palliatives, profonde d’emblée et en l’absence de consentement possible. L’intentionnalité des sédations pour les hémorragies, dyspnée et agitation appartenait à l’axe D2 (sédation de durée indéterminée) ; les souffrances existentielles, douleur et morales à l’axe D3 (sédation maintenue jusqu’au décès).
Conclusion : SEDAPALL serait une aide au cours des procédures collégiales indispensable avant toute sédation. Il préciserait l’intentionnalité de la sédation et favoriserait la compréhension de ce traitement par les professionnels intervenants auprès de ces patients.
BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.