Ce numéro de la revue est consacré à la philosophie de terrain définie comme rapport entre réalité et pensée et comme spécificité de l’activité philosophique. Sont abordés la revendication contemporaine d’une philosophie impliquée, une philosophie de terrain en lien avec la pensée canguilhémienne des normes individuelles, l’accompagnement de la fin de vie ou encore la recherche en éthique clinique.
Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice.
Background: Approximately 4.5% of the population live with serious mental illness (SMI), a term referring to mental health disorders that are chronic, impair function, and require ongoing treatment. People living with SMI are at risk of premature mortality relative to people without SMI. Chronic medical illnesses contribute significantly to mortality among individuals with SMI. The standard of care for individuals with serious medical illnesses includes palliative care. However, the provision of palliative care has not been operationalized for individuals with SMI.
Objective/Methods: This narrative review presents existing epidemiologic data on end-of-life (EOL) care and palliative care for individuals with comorbid serious medical illness and SMI. Challenges in the care of such patients are discussed. The role of the consultation-liaison psychiatrist in providing EOL care for individuals with SMI is delineated with an eye towards redressing disparities.
Results: Individuals with SMI are at risk of sub-optimal end-of-life care. Patient, clinician, and system-level factors all contribute to disparities including decreased access to palliative care, uneven continued engagement with mental health services, and low rates of advance care planning. CL psychiatrists can use their expertise at the intersection of medicine and psychiatry to address such disparities by (1) correcting misassumptions, (2) promoting advance care planning, (3) engaging long-term caregivers, (4) recognizing social needs, (5) ensuring ongoing access to psychiatric treatment, and (6) addressing suffering.
Conclusions: There are significant disparities in the end-of-life care of individuals with SMI. CL psychiatrists have expertise to ally with medical providers and redress these disparities.
Depuis plusieurs décennies, le mouvement des soins palliatifs a développé des pratiques sédatives en cas de symptômes insupportables en fin de vie. Ces pratiques, à vrai dire presque confidentielles, ont été mises en lumière par l’évolution législative de 2016 avec la loi dite Claeys Leonetti. Mais il existe un risque réel de « sédater trop vite et trop fort des patients mal évalués » par des acteurs peu formés, et confondant souvent les niveaux et les intentionnalités de sédations. En effet, une réflexion éthique est indispensable, tout comme une vraie connaissance de la démarche palliative, pour adapter avec justesse et mesure des stratégies de sédation. Avec l’aide des sociétés savantes, la HAS a publié en deux ans des documents rigoureux, recommandant notamment un outil désormais incontournable permettant de préciser l’intentionnalité de la sédation, la fiche SEDAPALL.
Context: At our institution, clinical pathways capture physicians’ prognostication of patients being evaluated for palliative radiotherapy (PRT). We hypothesize a low utilization rate of long-course RT (LCRT) and stereotactic ablative radiotherapy (SAbR) among patients seen at the end-of-life, especially those with physician predicted poor prognosis.
Objective: To analyze utilization rates and predictors of LCRT and SAbR at the end-of-life.
Methods: A retrospective review was conducted on patients who were evaluated for PRT between January 2017 to August 2019 and died within 90 days of consultation. Binary logistic regression was used to identify predictors for utilization of LCRT (=10 fractions) and SAbR.
Results: A total of 1,608 patients were identified, of which 1,038 patients (64.6%) were predicted to die within a year. 693 patients (66.8%) out of 1,038 were prescribed LCRT or SAbR. On multivariate analysis, patients were less likely to be prescribed LCRT if treated at an academic site (OR 0.30; 95% CI 0.23-0.39; p<0.01) and treated for bone metastases (OR 0.08; 95% CI 0.05-0.11; p<0.01) or other non-brain/non-bone metastases (OR 0.19; 95% CI 0.13-0.30; p<0.01). SAbR was less likely to be prescribed among patients predicted to die within a year (OR, 0.09; 95% CI 0.06-0.16; p<0.01), treated for bone metastases (OR, 0.13; 95% CI 0.07-0.22; p<0.01), with poor performance status (OR, 0.51; 95% CI 0.31-0.85; p=0.01), and with a breast primary (OR, 0.35; 95% CI 0.15-0.82; p=0.02).
Conclusion: Despite most patients predicted to have a limited prognosis, LCRT and SAbR were commonly prescribed at the end-of-life.
Objectives: This study aims to identify factors among British community-based adults associated with advance care planning engagement. Factors are then compared among six domains of wishes: medical care, spiritual and religious needs, privacy and peace, dignified care, place of death and pain relief.
Methods: Cross-sectional data were analysed from a stratified random sample of adults across Great Britain (England, Scotland and Wales) who were interviewed on their attitudes towards death and dying. Weighted multivariable logistic regression tested for associations with expressing any end-of-life wishes and then for each separate domain.
Results: Analysis of 2042 respondents (response rate: 53.5%) revealed those less likely to have discussed their wishes were: male, younger, born in the UK, owned their residence, had no experience working in health or social care, had no chronic conditions or disabilities, had not experienced the death of a close person in the last 5 years and feel neither comfortable nor uncomfortable or uncomfortable talking about death. Additional factors among the six domains associated with having not discussed wishes include: having less and more formal education, no religious beliefs, lower household income and living with at least one other person.
Conclusions: This study is the first to be conducted among a sample of community-dwelling British adults and the first of its kind to compare domains of end-of-life wishes. Our findings provide an understanding of social determinants which can inform a public health approach to end-of-life care that promotes advance care planning among compassionate communities.
Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently “successful ageing” became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.
Objective: Communication between patients and end-of-life care providers requires sensitivity given the context and complexity involved. This systematic review uses a narrative approach to synthesise clinicians’ understandings of communication in end-of-life care.
Methods: A systematic, narrative synthesis approach was adopted given the heterogeneity across the 83 included studies. The review was registered prospectively on PROSPERO (ID: CRD42019125155]. Medline was searched for all articles catalogued with the MeSH terms “palliative care,” “terminal care” or “end-of-life care,” and “communication”. Articles were assessed for quality using a modified JQI-QARI tool.
Results: The findings highlight the centrality and complexity of communication in end-of-life care. The challenges identified by clinicians in relation to such communication include the development of skills necessary, complexity of interpersonal interactions, and ways in which organisational factors impact upon communication. Clinicians are also aware of the need to develop strategies for interdisciplinary teams to improve communication.
Conclusion: Training needs for effective communication in end-of-life contexts are not currently being met.
Practice Implications: Clinicians need more training to address the lack of skills to overcome interactional difficulties. Attention is also needed to address issues in the organisational contexts in which such communication occurs.
The large scale and rapid spread of the current COVID-19 pandemic has changed the way hospitals and other health services operate. Opportunities for patient-centered decision-making at the end of life are being jeopardized by a scarcity of health system resources. In response, the traditional doctor-initiated advanced care planning (ACP) for critical illness may also need to be readjusted. We propose nurse-led and allied health-led ACP discussions to ensure patient and family inclusion and understanding of the disease prognosis, prevention of overtreatment, and potential outcomes in crisis times. We highlight known barriers and list enablers, long-term and short-term opportunities to assist in the culture change.
Background: To effectively care for dying patients, nurses need to possess death self-efficacy—the state of having both a range of skills and capabilities to provide care to dying patients and confidence in one’s ability to do so. A paucity of death self-efficacy may lead to burnout.
Objectives: The aims of this study are to clarify oncology nurses’ death self-efficacy and to explore its relationships with attitudes toward death and burnout.
Methods: A cross-sectional study was performed in 7 cancer hospitals across mainland China between June and July 2019. Oncology nurses completed an online survey consisting of the Death Self-efficacy Scale, Death Attitude Profile–Revised Scale, and Maslach Burnout Inventory.
Results: The 755 oncology nurses completing the survey reported low death self-efficacy and high levels of burnout. Those who had more years of clinical experience, had the highest professional rank, talked death quite often, and have received palliative care trainings, doing no shift work, scored higher on death self-efficacy. Death self-efficacy was positively correlated with positive attitudes toward death and negatively correlated with levels of burnout. The multiple regression analysis showed that death self-efficacy and attitudes toward death were independent, significant predictors of oncology nurses’ burnout.
Conclusions: Chinese oncology nurses are not well prepared to care for dying cancer patients and cope with death-related issues.
Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver’s aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough’s Weight of Evidence and Morgan’s Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) “Embodied impact of care” whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) “Caregiving spouse’s conceptualisation of their role” in which caregiver’s navigated their self and marriage identities in relation to their partner’s condition and expectations about gender and place; 3) “Learning to care” which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.
As left ventricular assist device (LVAD) technology continues to offer longer and better lives to patients with advanced heart failure, it also redefines how these patients die. This evolving dying process is unfamiliar to many clinicians and can be distressing for patients and their caregivers. No element of this process is more visceral or immediate than the act of withdrawing LVAD support, particularly for a patient who is awake and interactive. Despite ongoing improvement in survival and functional outcomes, LVAD patients frequently experience deaths characterized by distress, confusion, and a lack of control that fail to meet many of the criteria for high-quality end-of-life care.
Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers’ well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients’ lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.
Background: Delirium is a distressing neurocognitive disorder that is common among terminally ill individuals, although few studies have described its occurrence in the acute care setting among this population.
Aim: To describe the prevalence of delirium in patients admitted to acute care hospitals in Ontario, Canada, in their last year of life and identify factors associated with delirium.
Design: Population-based retrospective cohort study using linked health administrative data. Delirium was identified through diagnosis codes on hospitalization records.
Setting/participants: Ontario decedents (1 January 2014 to 31 December 2016) admitted to an acute care hospital in their last year of life, excluding individuals age of <18 years or >105 years at admission, those not eligible for the provincial health insurance plan between their hospitalization and death dates, and non-Ontario residents.
Results: Delirium was recorded as a diagnosis in 8.2% of hospitalizations. The frequency of delirium-related hospitalizations increased as death approached. Delirium prevalence was higher in patients with dementia (prevalence ratio: 1.43; 95% confidence interval: 1.36–1.50), frailty (prevalence ratio: 1.67; 95% confidence interval: 1.56–1.80), or organ failure–related cause of death (prevalence ratio: 1.23; 95% confidence interval: 1.16–1.31) and an opioid prescription (prevalence ratio: 1.17; 95% confidence interval: 1.12–1.21). Prevalence also varied by age, sex, chronic conditions, antipsychotic use, receipt of long-term care or home care, and hospitalization characteristics.
Conclusion: This study described the occurrence and timing of delirium in acute care hospitals in the last year of life and identified factors associated with delirium. These findings can be used to support delirium prevention and early detection in the hospital setting.
When someone is terminally ill, it is often a very stressful time for the dying person and their family. It would not be unusual for intra-family conflict, involving one or more family members and even the dying person, to occur. However, this type of conflict has not been identified as an end-of-life issue needing to be noticed and addressed or prevented when possible. This lack of attention could be because it is not known how common or how impactful this type of conflict is. A scoping research literature review was conducted for available 2004–2019 evidence on the incidence or prevalence of intra-family conflict, factors contributing to it or causing it, and the outcomes or impact of it. A search for published peer-review articles identified 18 research reports for a scoping review. The 18 studies, all conducted in developed countries, revealed intra-family conflict is often present; and with a range of harmful effects for the dying person, the family as a whole or individual family members, and other persons and organizations. The identified factors contributing to or predisposing intra-family conflict were grouped into three categories: (a) family disagreements over curative treatment and/or end-of-life care and decisions, (b) previous family conflict and other family dynamic matters, and (c) the dying process itself. The evidence identified through this scoping review, although relatively minimal, should be useful for planning future research and for raising awareness of end-of-life intra-family conflict to improve social services and palliative programs or services.
Objectives: We evaluated the trend of end-of-life healthcare utilization and life-sustaining interventions for older adults with dementia 3 to 4 years after the change in hospice policy.
Design: Population-based retrospective cohort study.
Setting and participants: we used the National Health Insurance Research database of enrolled patients =65 years of age diagnosed with dementia who died in 2010-2013 (n = 2062).
Methods: Aggressive treatments, including healthcare utilization and life-sustaining interventions, were recorded within 6 months of death. Aggressive healthcare utilization included =1 emergency department visits, =1 hospitalizations, >14 days of hospitalization, intensive care unit admission, and death in an acute care hospital. Life-sustaining interventions were enteral tube, artificial nutrition, blood transfusion, hemodialysis, invasive ventilation, and cardiopulmonary resuscitation.
Results: Compared with 2010 2012, 2013 rates significantly decreased for all measures (P < .001). Composite scores of healthcare utilization and life-sustaining treatments in 2013 were significantly lower than for 2010 2012, after controlling for confounding variables (both P < .001).
Conclusions and implications: Older patients with dementia had a trend of reduced healthcare utilization and fewer life-sustaining treatments near the end of life from 2010 to 2013 after a policy change.
Objectives: This study aimed to evaluate the trends of utilization of palliative care and aggressive end-of-life care for patients who died of cancers and those who died of non-cancer diseases in hospitals.
Methods: The medical records of patients who died in a public hospital due to cancer or other diseases were reviewed. The proportion of those who received palliative care, admitted to intensive care unit (ICU) within 30 days of death, died in ICU, and received cardiopulmonary resuscitation (CPR) within 3 days of death in 2013–2014, 2015–2016, and 2017–2018, respectively, was investigated. Multivariate logistic regression was applied to evaluate the independent effects of various factors on the risk of receiving aggressive end-of-life care.
Results: Significant trends of increase in receiving palliative care were found. The proportion of patients who died of non-cancer diseases and received palliative care was lower than that of those who died of cancers. Palliative care was associated with a reduced risk of ICU admission within 30 days of death (adjusted odds ratio [AOR]: 0.361), death in ICU (AOR: 0.208), and receiving CPR within 3 days of death (AOR: 0.057). Patients who died of non-cancer diseases had a higher risk of ICU admission within 30 days of death (AOR: 5.016), death in ICU (AOR: 5.086), and receiving CPR within 3 days of death (AOR: 3.274).
Conclusion: Utilization of palliative care is increasing. Patients who died of non-cancer diseases received less palliative care but more aggressive end-of-life care than those who died of cancers.
The aim of the research was to conduct the Turkish validity and reliability study of the Frommelt Attitude toward Care of the Dying Scale. The study used a cross-sectional research design. The sample of the study consists of 236 intensive care nurses. The data were analyzed using SPSS 22.0 and SPSS AMOS 22.0 programs. Descriptive statistical methods, reliability analysis, exploratory and confirmatory factor analyses were used in the analysis of the data. According to the findings of the exploratory factor analysis, the scale was divided into six factors as in its original. According to results of the confirmatory factor analysis showed that the goodness of fit of the scale was acceptable level. Cronbach’s alpha coefficients of the Frommelt Attitude toward Care of the Dying and subdimensions were found to be between 0.606 and 0.800. These results showed that the Turkish form of scale was valid and reliable and it had the necessary conditions for using Turkish form.
Background: Anticancer treatment exposes patients to negative consequences such as increased toxicity and decreased quality of life, and there are clear guidelines recommending limiting use of aggressive anticancer treatments for patients near end of life. The aim of this study is to investigate the association between anticancer treatment given during the last 30 days of life and adverse events contributing to death and elucidate how adverse events can be used as a measure of quality and safety in end-of-life cancer care.
Methods: Retrospective cohort study of 247 deceased hospitalised cancer patients at three hospitals in Norway in 2012 and 2013. The Global Trigger Tool method were used to identify adverse events. We used Poisson regression and binary logistic regression to compare adverse events and association with use of anticancer treatment given during the last 30 days of life.
Results: 30% of deceased hospitalised cancer patients received some kind of anticancer treatment during the last 30 days of life, mainly systemic anticancer treatment. These patients had 62% more adverse events compared to patients not being treated last 30 days, 39 vs. 24 adverse events per 1000 patient days (p < 0.001, OR 1.62 (1.23–2.15). They also had twice the odds of an adverse event contributing to death compared to patients without such treatment, 33 vs. 18% (p = 0.045, OR 1.85 (1.01–3.36)). Receiving follow up by specialist palliative care reduced the rate of AEs per 1000 patient days in both groups by 29% (p = 0.02, IRR 0.71, CI 95% 0.53–0.96).
Conclusions: Anticancer treatment given during the last 30 days of life is associated with a significantly increased rate of adverse events and related mortality. Patients receiving specialist palliative care had significantly fewer adverse events, supporting recommendations of early integration of palliative care in a patient safety perspective.
Controlled donation after circulatory death (cDCD) occurs after a decision to withdraw life-sustaining treatment (WLST) and subsequent family approach and approval for donation. We currently lack data on factors that impact the decision-making process on WLST and whether time from admission to family approach, influences family consent rates. Such insights could be important in improving the clinical practice of potential cDCD donors. In a prospective multicenter observational study, we evaluated the impact of timing and of the clinical factors during the end-of-life decision-making process in potential cDCD donors. Characteristics and medication use, of 409 potential cDCD donors admitted to the intensive care units (ICU), were assessed. End-of-life decision-making was made after a mean time of 97 h after ICU admission and mostly during the day. Intracranial hemorrhage or ischemic stroke and a high APACHE IV score were associated with a short decision-making process. Preserved brainstem reflexes, high Glasgow Coma Scale scores or cerebral infections were associated with longer time to decision-making. Our data also suggest that the organ donation request could be made shortly after the decision to stop active treatment and consent rates were not influenced by day- or nighttime or by the duration of the ICU stay.