This study aimed to evaluate nurses’ experiences and factors related to their attitudes regarding discussions of do-not-resuscitate (DNR) and withdrawal of life-sustaining treatment (LST) with patients and their families. A cross-sectional survey was conducted in a tertiary hospital in Taiwan. Nurses aged = 20 years who were in charge of acute inpatient care were randomly recruited. A semi-structured questionnaire was used to evaluate participants’ experiences and attitudes regarding discussions of DNR and LST withdrawal for terminal patients. Logistic regression with adjustment for covariates was used to analyze factors related to participants’ attitudes toward discussions about DNR and LST withdrawal with patients and families in the future care of terminal patients. The participants were 132 nurses. They had significantly more discussions about DNR and LST withdrawal with patients’ families than with patients. Regression analysis showed that participants who had past experiences in actively initiating DNR discussions with patients or patients’ families were significantly more likely to discuss DNR with patients in the future care of terminal patients, but participants aged 40.0 to 60.0 years were significantly less likely to have DNR discussions than those aged 20.0 to 29.9 years. Experiences of actively initiated DNR or LST discussions with patients’ families were significantly more likely to discuss DNR with patients’ families, but those aged 40.0 to 60.0 years were also significantly less likely to have DNR discussions than those aged 20.0 to 29.9 years. Experience in actively initiating discussions about LST withdrawal with patients’ families, being male, and possessing an education level higher than university were significantly related to LST withdrawal discussions with terminal patients or their families in the future. In conclusion, there need to be more discussions about DNR and LST withdrawal with patients. To protect patients’ autonomy and their rights to make decisions about their DNR and LST, measures are needed to facilitate DNR and LST discussions with patients to ensure better end-of-life care
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
Par son arrêt n°19/08858 du 20 mai 2019, la Cour d’appel de Paris, au nom du droit à la vie, bouscule la redéfinition de la voie de fait opérée par le Tribunal des conflits et l’interprétation donnée à la liberté individuelle par le Conseil constitutionnel.
PURPOSE: To provide guidance on the management of patients with neovascular age-related macular degeneration and its subtypes who respond poorly to anti-vascular endothelial growth factor (anti-VEGF) therapy, and to identify cases where suspending anti-VEGF treatment may be warranted.
METHODS: Through a literature review and the combined knowledge and clinical experience of retinal experts, the Steering Committee of the Bayer-sponsored Vision Academy developed an algorithm for determining when to suspend anti-VEGF treatment of neovascular age-related macular degeneration in cases of futility.
RESULTS: Consideration of factors that may cause suboptimal response to anti-VEGF therapy, such as undertreatment or misdiagnosis of the underlying condition, and factors that may preclude continued treatment, such as injection- or drug-induced complications, is necessary for adjusting treatment protocols in patients who respond poorly to anti-VEGF. If poor response to treatment persists after switching to an alternative anti-VEGF agent and no change in response is observed after withholding treatment for a predetermined period of time ("treatment pause"), anti-VEGF treatment may be considered futile and should be suspended.
CONCLUSION: This publication introduces an algorithm to guide the management of neovascular age-related macular degeneration in patients showing poor response to anti-VEGF treatment and provides expert guidance for suspending anti-VEGF treatment in cases of futility.
INTRODUCTION: In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation.
METHODS AND ANALYSIS: SDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient's death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks-the Common-Sense Self-Regulation Model and the Theoretical Domains Framework- to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis.
ETHICS AND DISSEMINATION: This study has been approved by the Centre Hospitalier de l'Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation.
OBJECTIVE: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs).
STUDY DESIGN: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
RESULTS: Dying infants in the cohort underwent DNR (55%), CPR (21%), and WLST (73%). Gestational age, cause of death, and race were significantly and differently associated with each practice: younger gestational age (<28 weeks) was associated with CPR (OR 1.7, 95% CI 1.5-2.1) but not with DNR or WLST, and central nervous system injury was associated with DNR (1.6, 1.3-1.9) and WLST (4.8, 3.7-6.2). Black race was associated with decreased odds of WLST (0.7, 0.6-0.8). Between centers, practices varied widely at different gestational ages, race, and causes of death.
CONCLUSIONS: From the available data on end-of-life care practices for regional NICU patients, variability appears to be either individualized or without consistency.
OBJECTIVE: To explore the experience of intensive care nurses when participating in the withdrawal of life-sustaining treatments from intensive care unit patients.
DESIGN AND METHODS: A qualitative descriptive and explorative design. Data were collected in 2017 and 2018 by interviewing nine intensive care nurses. The data were analysed by using systematic text condensation.
SETTING: The nine intensive care nurses interviewed worked in four different intensive care units located in one university hospital and one local hospital.
MAIN OUTCOME MEASURES: Experiences when participating in the process of withdrawing life-sustaining treatments.
FINDINGS: Three categories emerged from the data analysis: ICU nurses' experiences of stress in the process of treatment withdrawal; a requirement for interdisciplinary support and cooperation; and elements to achieve a dignified treatment withdrawal process.
CONCLUSION: The intensive care nurses experienced challenges and emotional reactions when patients were overtreated or when they had to participate in treatments they did not agree with. They considered debriefings to be helpful in dealing with emotions. Thorough planning, good communication, pain relief, and the creation of a peaceful environment were perceived as important elements in achieving a dignified treatment withdrawal process.
Background: Patient/clinician communication is critical to quality cancer care at the end-of-life (EOL). Yet discussions about systemic therapy discontinuation or hospice as a care option are commonly deferred. Real-time communication about these complex topics has not been evaluated. Palliative care visits may provide useful insight into how communication about EOL care occurs over time.
Objective: To explore the nature of discussions about systemic therapy discontinuation and hospice among patients, families, and palliative care clinicians during care for incurable cancer.
Design: Qualitative study of palliative care visits.
Setting/Subjects: We audiorecorded visits of patients and families who participated in a palliative care trial from diagnosis of incurable lung or noncolorectal gastrointestinal cancer through the course of cancer care (n = 30).
Measurements: We used thematic analysis to characterize communication patterns in the context of clinical events.
Results: Content and tenor of discussions shifted in relation to patient health status. In the absence of acute medical deterioration, discussions addressed hospice broadly as an EOL care option. Candid exchanges between patients and families and their clinicians supported increasing depth and specificity of EOL care communication. As clinicians identified that patients were not tolerating treatment, the clinicians encouraged contemplation about quality-of-life implications of continuing treatment or the possibility that treatment might harm more than help, in anticipation of change in health status.
Conclusions: Longitudinal relationships with palliative care clinicians functioned through multiple pathways to support patients and families in making complex EOL care decisions. Results inform models and interventions of communication at the EOL.
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.
Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.
METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.
RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.
CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
Importance: Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care.
Objectives: To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death.
Design, Setting, and Participants: This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019.
Exposure: Cessation of dialysis treatment before death.
Main Outcomes and Measures: Bereaved Family Survey ratings.
Results: Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001).
Conclusions and Relevance: This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.
OBJECTIVES: To assess the impact of early triggered palliative care consultation on the outcomes of high-risk ICU patients.
DESIGN: Single-center cluster randomized crossover trial.
SETTING: Two medical ICUs at Barnes Jewish Hospital.
PATIENTS: Patients (n = 199) admitted to the medical ICUs from August 2017 to May 2018 with a positive palliative care screen indicating high risk for morbidity or mortality.
INTERVENTIONS: The medical ICUs were randomized to intervention or usual care followed by washout and crossover, with independent assignment of patients to each ICU at admission. Intervention arm patients received a palliative care consultation from an interprofessional team led by board-certified palliative care providers within 48 hours of ICU admission.
MEASUREMENTS AND MAIN RESULTS: Ninety-seven patients (48.7%) were assigned to the intervention and 102 (51.3%) to usual care. Transition to do-not-resuscitate/do-not-intubate occurred earlier and significantly more often in the intervention group than the control group (50.5% vs 23.4%; p < 0.0001). The intervention group had significantly more transfers to hospice care (18.6% vs 4.9%; p < 0.01) with fewer ventilator days (median 4 vs 6 d; p < 0.05), tracheostomies performed (1% vs 7.8%; p < 0.05), and postdischarge emergency department visits and/or readmissions (17.3% vs 38.9%; p < 0.01). Although total operating cost was not significantly different, medical ICU (p < 0.01) and pharmacy (p < 0.05) operating costs were significantly lower in the intervention group. There was no significant difference in ICU length of stay (median 5 vs 5.5 d), hospital length of stay (median 10 vs 11 d), in-hospital mortality (22.6% vs 29.4%), or 30-day mortality between groups (35.1% vs 36.3%) (p > 0.05).
CONCLUSIONS: Early triggered palliative care consultation was associated with greater transition to do-not-resuscitate/do-not-intubate and to hospice care, as well as decreased ICU and post-ICU healthcare resource utilization. Our study suggests that routine palliative care consultation may positively impact the care of high risk, critically ill patients.
PURPOSE OF REVIEW: The purpose of this review is the 'when' and 'how' of the matter of withdrawing noninvasive ventilation (NIV) at end-of-life (EoL) setting, having in mind the implications for patients, families and healthcare team.
RECENT FINDINGS: Several recent publications raised the place and potential applications of NIV at EoL setting. However, there are no clear guidelines about when and how to withdraw NIV in these patients. Continuing NIV in a failing clinical condition may unnecessarily prolong the dying process. This is particularly relevant as frequently, EoL discussions are started only when patients are in severe distress, and they have little time to discuss their preferences and decisions.
SUMMARY: Better advanced chronic disease and EoL condition definitions, as well as identification of possible scenarios, should help to decision-making and find the appropriate time to initiate, withhold and withdraw NIV. This review emphasized the relevance of an integrated approach across illness' trajectories and key transitions of patients who will need EoL care and such sustaining support measure.
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
OBJECTIVE: Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.
METHODS: In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.
RESULTS: Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.
CONCLUSIONS: Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.
This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, and examines the challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the 'burden' of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being.
OBJECTIVE: To present the characteristics of pediatric patients with chronic and irreversible diseases submitted to palliative extubation.
METHOD: This is a descriptive analysis of a series of patients admitted to a pediatric public hospital, with chronic and irreversible diseases, permanently dependent on ventilatory support, who were submitted to palliative extubation between April 2014 and May 2019. The following information was collected from the medical records: demographic data, diagnosis, and time and type of mechanical ventilation; date, time, and place of palliative extubation; medications used; symptoms observed; and hospital outcome.
RESULTS: A total of 19 patients with a mean age of 2.2 years were submitted to palliative extubation. 68.4% of the extubations were performed in the ICU; 11 patients (57.9%) died in the hospital. The time between mechanical ventilation withdrawal and in-hospital death ranged from 15 min to five days. Thirteen patients used an orotracheal tube and the others used tracheostomy. The main symptoms were dyspnea and pain, and the main drugs used to control symptoms were opioids and benzodiazepines.
CONCLUSIONS: It was not possible to identify predictors of in-hospital death after ventilatory support withdrawal. Palliative extubation requires specialized care, with the presence and availability of a multidisciplinary team with adequate training in symptom control and palliative care.
AIM: The purpose of the present study was to collate examples of end-of-life care guidelines from various counties, examine their contents, and gain an overall picture of how end-of-life care guidance is offered to physicians and care providers internationally.
METHODS: In this study, eight researchers worked independently to source and examine national-level end-of-life care guidelines from different countries and regions. Data collected by each researcher were gathered into a unified table. The items in the table included basic information (publisher, year, URL etc.) and more specific items, such as the presence/absence of legal information and family's role in decision-making. These data were then used to identify trends, and examine the mechanics and delivery of guidance on this topic.
RESULTS: A total of 54 guidelines were included in the study. All the guidelines were published between 2000 and 2016, and 60% (n = 33) were published after 2012. The length of the guidelines varied from two to 487 pages (median 38 pages), and had different target audiences - both lay and professional. A total of 38 (70%) of the guidelines included information about the relevant laws and legal issues, 47 (87%) offered advice on withholding and withdrawing treatment, 46 (85%) discussed the family's role in decision-making and 46 (85%) emphasized the teamwork aspect of care.
CONCLUSIONS: The present findings show that end-of-life care guidelines are generally made reactively in response to the trend toward patient-centered care, and that to create effective guidelines and implement them requires multilevel cooperation between governmental bodies, healthcare teams, and patients and their families.
Libre et éclairé : voilà comment devrait être un consentement viable, valable et authentique, tant dans le monde de la santé que dans celui des affaires. Mieux même, et plus conforme à l’actualité, est qu’il soit « libre et informé » : cela met en avant la personne concernée plutôt que le message et sa source lumineuse forcément en surplomb. Telles sont en tout cas les conditions qui lui donnent son label aux plans de la loi et de la déontologie, si ce n’est à celui de l’éthique. Pour autant, liberté et information se situent-elles exactement au même niveau fondateur ? Jouent-elles des rôles symétriques dans le processus qui conduit au oui ?