Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
BACKGROUND/OBJECTIVES: To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia.
DESIGN: A cross-sectional survey.
SETTING: The Netherlands.
PARTICIPANTS: Random samples of 1,965 citizens (response = 1,965/2,641 [75%]) and 1,147 physicians (response = 1,147/2,232 [51%]).
MEASUREMENTS: The general public was asked to what extent they agreed with the statement "I think that people with dementia should be eligible for euthanasia, even if they no longer understand what is happening (if they have previously asked for it)." Physicians were asked whether they were of the opinion that performing euthanasia is conceivable in patients with advanced dementia, on the basis of a written advance directive, in the absence of severe comorbidities. Multivariable logistic regression was performed to identify factors associated with the acceptance of euthanasia.
RESULTS: A total of 60% of the general public agreed that people with advanced dementia should be eligible for euthanasia. Factors associated with a positive attitude toward euthanasia were being female, age between 40 and 69 years, and higher educational level. Considering religion important was associated with lower acceptance. The percentage of physicians who considered it acceptable to perform euthanasia in people with advanced dementia was 24% for general practitioners, 23% for clinical specialists, and 8% for nursing home physicians. Having ever performed euthanasia before was positively associated with physicians considering euthanasia conceivable. Being female, having religious beliefs, and being a nursing home physician were negatively associated with regarding performing euthanasia as conceivable.
CONCLUSION: There is a discrepancy between public acceptance of euthanasia in patients with advanced dementia and physicians' conceivability of performing euthanasia in these patients. This discrepancy may cause tensions in daily practice because patients' and families' expectations may not be met. It urges patients, families, and physicians to discuss mutual expectations in these complex situations in a comprehensive and timely manner.
Conflict is an important consideration in the intensive care unit (ICU). In this setting, conflict most commonly occurs over the 'best interests' of the incapacitated adult patient; for instance, when families seek aggressive life-sustaining treatments, which are thought by the medical team to be potentially inappropriate. Indeed, indecision on futility of treatment and the initiation of end-of-life discussions are recognised to be among the greatest challenges of working in the ICU, leading to emotional and psychological 'burnout' in ICU teams. When these disagreements occur, they may be within the clinical team or among those close to the patient, or between the clinical team and those close to the patient. It is, therefore, crucial to have a theoretical understanding of decision-making itself, as unpicking misalignments in the family's and clinical team's decision-making processes may offer strategies to resolve conflict. Here, we relate Kahneman and Tversky's work on cognitive biases and behavioural economics to the ICU environment, arguing that these biases could partly explain disparities in the decision-making processes for the two conflicting parties. We suggest that through the establishment of common ground, challenging of cognitive biases and formulation of mutually agreeable solutions, mediation may offer a pragmatic and cost-effective solution to conflict resolution. The litigation process is intrinsically adversarial and strains the doctor-patient-relative relationship. Thus an alternative external party should be considered, however mediation is not frequently used and more research is needed into its effectiveness in resolving conflicts in the ICU.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
Infections often impact care of hospice patients; however, limited guidance exists for end-of-life infection management. Regardless of patient prognosis, appropriate antibiotic use is necessary for maintaining quality of life. Antibiotics may be associated with serious adverse events, posing safety risks to patients that should be factored into the appropriateness determination. Fluoroquinolone antibiotics are prescribed frequently in hospice. There are 8 fluoroquinolone drug safety warnings regarding risk for serious adverse events communicated by the US Food and Drug Administration. A retrospective chart review at a hospice pharmacy services provider identified decedents who used a fluoroquinolone during a 1-month period. Charts were evaluated for the presence of risk factors for serious adverse events, including advanced age (86.0%), orders for multiple QTc prolongation risk medications (51.5%), hypertension (64.1%), and concomitant corticosteroids (22.9%). Findings demonstrate notable risk with the use of at least 1 class of antibiotics in a hospice population. STAMPS is a hospice decision support tool, developed to guide symptom-driven antibiotic use that incorporates safety assessment and individual goals of care into infection management planning. The tool can also serve as a framework for patient-centered communications about appropriate antibiotic use in hospice between providers, patients, and families.
OBJECTIVES: Code status specifies the action that healthcare providers should take in the event of cardiac arrest. Studies have shown, however, that patients with do-not-resuscitate/do-not-intubate (DNR/DNI) orders have worse outcomes and do not consistently receive the standard of care. Several studies have demonstrated that physicians behave differently toward patients with DNR/DNI orders, but little research exists into whether DNR/DNI status affects the practice of other members of the care team. Our objective was to determine whether code status affects decision making by nursing staff.
METHODS: This was an anonymous, self-administered survey of nurses between April 2018 and March 2019 using SurveyMonkey. The survey contained four previously published clinical vignettes followed by a series of questions regarding specific interventions tailored to reflect nursing escalation of care. Our focus was two local hospitals: one large academic quaternary-referral center and one large community hospital. Registered nurses on medical-surgical units identified based on available unit-specific e-mail listservs from both hospitals were the participants. Nurses in higher-acuity units were excluded.
RESULTS: Nurses are significantly less likely to call rapid response or a physician when a patient undergoes certain changes in clinical status if the patient is labeled as DNR/DNI rather than full code. For all of the vignettes, respondents were less likely to say they would call rapid response or a physician for patients with a DNR/DNI status who developed tachycardia (P < 0.001). Nurses also were less likely to escalate care for patients with DNR/DNI status who developed tachypnea or mental status changes. Nurses were equally likely to call a physician for the development of abdominal pain or new hypotension (P > 0.05). Nurses with >3 years of experience were less likely to escalate care throughout the vignettes (odds ratio <1).
CONCLUSIONS: This study is the first to demonstrate that code status affects decision making by nursing staff. It highlights the limitations that code status designations create with regard to patient care. By acknowledging that patients with DNR/DNI orders receive different care, we can create systems in which patients are treated equally, regardless of their code status.
INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated.
METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer.
ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.
Les infirmiers peuvent apporter une aide à la décision dans les situations d’urgence lors d’un choc septique, notamment si le malade n’a pas rédigé de directives anticipées et/ou désigné une personne de confiance. Ils peuvent entreprendre ou faciliter la collégialité des décisions nécessaires sur le plan juridique et éthique. Les habitus d’une équipe à la réflexion éthique et au recueil de données initial sont les garants du respect de la parole du patient.
BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region.
DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.
SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA.
PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.
RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death.
CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.
Patients with cancer face many difficult decisions and encounter many clinical situations that undermine decisional capacity. For this reason, assessing decision-making capacity should be thought of at every medical encounter. The culmination of variable disease trajectories, following patients to the end of life, use of high-risk treatments, and other weighty personal decisions require attention to patients' ability to engage in decisions. Oncologists develop meaningful relationships with their patients. This familiarity may lead to forgoing the process of diligently assessing a patient's cognitive ability and/or decisional capacity when important decisions need to be made. While the process may feel like it takes place spontaneously, many subtle and overt details are involved with the decisions around cancer care that require pointed questioning and probing. Thus, there are many ways to fall short in determining decisional capacity. Clinicians are inconsistent in their decisional capacity determinations and generally assume more decisional capacity than the patient has. Consult and referral services such as ethics and psychiatry can help with treatment decisions and with assessing underlying psychosocial and psychiatric conditions. Decisional capacity may fluctuate and requires a variable amount of decisional ability depending on the clinical situation; hence, it is time-specific and decision-specific. This review is intended to provide a summary of key components of decisional capacity while highlighting areas in need of clinical refinement.
Anyone’s life can turn upside down. Illness, disease, and accidents can jeopardize the life of anyone at any time. For families and their loved ones who fall victim to a serious medical crisis or disease, a little preparation can make a big difference. A 2018 survey revealed that 92% of adults know it is important to share their medical preferences with family and medical providers in preparation for end of life. Only 32% report they have shared their wishes.
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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.
Topic: A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices.
Clinical Relevance: Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members.
Purpose of Paper: To provide recommendations for high-quality end-of-life care for patients and family members.
Content Covered: This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit.
Methods: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records.
Results: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn.
Conclusions: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.
Background/Objective: Surrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study.
Methods: Cases of non-traumatic ICH were enrolled from three hospitals (September 2015–December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0–100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0–100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection.
Results: A total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5 years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5–95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0–31.3).
Conclusions: Considering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.
A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Four themes were identified: (1) Patients: The caregivers respected the patients’ willingness and did not want to make them feel like “giving up.” (2) Caregivers’ self: They did not want to intensify the patients’ suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members’ opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals’ supports to deal with the concerns from patients and other family members as well as their emotional reactions.
Background: The Scottish Government’s vision for older people is that ‘Older people are valued as an asset; their voices are heard and they are supported to enjoy full and positive lives.’ In the health and social care setting in Scotland it is increasingly recognised that there is a need for careful planning of care for older patients with complex comorbidities, and that this should involve the patient where possible via a process of shared decision making (SDM).
Aim: To establish what future planning for healthcare decision making and end-of-life care was undertaken in the care of the older patients in a secondary care facility, and how much they participate in this process.
Method: An audit was conducted across four wards in the care of the older patient setting in a hospital for older patients in Scotland. Over a 2-week period, all patients’ charts (n = 82) were reviewed, and evidence was examined on whether the following documents were in place: a do not resuscitate order; an escalation of medical care plan; and an assessment of capacity/incapacity.
Results: The majority of patients (55%) had a resuscitation plan in place. An Incapacity Statement was also in place for the majority of patients who required it (90%). The escalation of medical care plan was only completed for a minority of patients, mainly those on the palliative care ward.
Conclusion: Plans for decision making around resuscitation were reasonably well developed. However, planning for other, more complex, future medical care needs was less well defined or explored with older patients.