Ce livre fournit des repères réflexifs sur les pratiques soignantes pour les acteurs du soin, les formateurs et les étudiants dans un contexte où de nombreuses questions éthiques ont émergé.
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BACKGROUND: Hospitalized patients with serious illness have significant symptom burden and face complex medical decisions that often require goals of care discussions. Given the shortage of specialty palliative care providers, there is a pressing need to improve the palliative care skills of internal medicine (IM) residents, who have a central role in the care of seriously ill patients hospitalized at academic medical centers.
METHODS: We conducted an anonymous survey of IM residents at a large, urban, academic medical center to identify which aspects of palliative care trainees find most important and their knowledge gaps in palliative care. The survey measured trainees' self-assessed degree of importance and knowledge of core palliative care skills and evaluated frequency of completing advance care planning documentation.
RESULTS: Overall, 51 (23%) IM residents completed the survey. The majority of trainees considered multiple palliative care skills to be "very important/important": symptom management, prognostication, introducing the palliative care approach, discussing code status, and breaking serious news. Across these same skills, trainees reported variable levels of knowledge. In our sample, trainees reported completing healthcare proxy forms and Medical Orders for Life-Sustaining Treatment infrequently.
CONCLUSIONS: IM trainees rated core palliative care skills as important to their practice. Yet, they reported knowledge gaps across multiple core palliative care skills that should be addressed given their role as frontline providers for patients with serious illness.
Background: Patients with heart failure have palliative care needs that can be effectively addressed by specialist palliative care (SPC). Despite this, SPC utilization by this patient population is low, suggesting barriers to SPC referral. We sought to determine the referral practices of cardiologists to SPC.
Methods: Cardiologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional, and attitudinal factors were analyzed using multiple and logistic regression.
Results: The response rate was 51% (551/1,082). Between 35.1% and 64.2% of respondents were unaware of referral criteria to local SPC services. Of the respondents, 29% delayed SPC referral due to prognostic uncertainty, and 46.8% believed that SPC prioritizes patients with cancer. In actual practice, nearly three-fourths of cardiologists referred late. Referral frequency was associated with greater availability of SPC services for patients with non-malignant diseases (P=0.008), a higher number of palliative care settings accepting patients receiving continuous infusions or pursuing acute care management (P<0.001), satisfaction with services (P<0.001); and less equation of palliative care with end-of-life care (P<0.001). Early timing of referral was associated with greater availability of SPC services for patients with non-malignant diseases and less equation of palliative care with end-of-life care.
Conclusions: the findings suggest that barriers to timely SPC referral include an insufficiency of services for patients with non-malignant diseases especially in the outpatient setting, the perception that SPC services do not accept patients receiving cardiology-specific treatments, and a misperception about the identity of palliative care.
Physicians have a long-standing obligation to consider social implications of their practice and its potential influences on health policy. One example of a practice’s influence on policy is determining death by neurologic criteria. By lobbying policymakers, maintaining their diagnostic skills, participating in national medical societies, and contributing to robust discourse, physicians can positively influence practice and policy about death determination by neurologic criteria.
Mismatch between whole-brain death criteria embedded in statutes and accepted tests physicians use to diagnose brain death have clinical and ethical implications that could undermine public trust in death pronouncements. We consider merits and drawbacks of 4 ways to address this problem.
PURPOSE: This study aimed to determine the palliative care difficulties experienced by nursing students during their clinical practice.
DESIGN AND METHODS: This descriptive and cross-sectional study was conducted with 305 nursing students at a university in Turkey. Data were collected using a student identification form and the palliative care difficulties scale.
FINDINGS: Nursing students experience a moderate level of difficulty in providing care for palliative care patients and receiving expert support facilitates their care initiatives.
PRACTICE IMPLICATIONS: It is important to support nursing students during their nursing education courses and clinical training, along with psychiatric nursing skills.
Purpose: The purpose of this study was to explore knowledge and attitudes of health program students towards ethical issues pertaining to the beginning and the end of human life, and associations between these attitudes and demographic variables.
Participants and Methods: The study took a mixed-method approach with self-administered survey questionnaires and in-depth interviews. A total of 88 students participated in the survey, and 10 students participated in interviews. The study was conducted among students in the Health Extension Program at a Christian university in Papua New Guinea.
Results: Students showed a higher acceptance of abortion than euthanasia. More year-4 students presented significantly deeper knowledge of euthanasia and abortion compared to year-1 students. There were no gender differences regarding knowledge and attitude towards these two bioethical issues. The majority of students opposed the idea of women's right to abortion, which is attributed mainly to socio-cultural reasons. The qualitative analysis indicated a very strong perception that having children 'defines' womanhood and also revealed general disapproval of any form of euthanasia. A low level of acceptance of various forms of euthanasia is associated with a respect for older people in Melanesian society and beliefs that ancestors' support is required for achieving prosperity in life.
Conclusion: The study offered a comprehensive description and analysis of students' knowledge and attitudes towards ethical issues pertaining to the beginning and the end of human life. Presented a low level of knowledge towards bioethical issues, together with a small proportion of the knowledge gained from lectures and tutorials, indicated inadequate teaching of bioethics and calls for further improvement. In the perspective of rapid social and cultural changes in the Papua New Guinea society, further studies on changing attitudes towards bioethics issues would be valuable.
The high mortality in intensive care unit (ICU) requires health workers to be able to provide palliative care so that patients die in peace and help the patient's family face the grieving process. The implementation of palliative care must be organized and assessed for the quality of its implementation. The aim was to describe the quality of palliative care in ICU "X" Hospital. The research used Mixed Methods. The first was the quantitative with descriptive research. The sample was 38 nurses and 4 doctors to obtain data on the quality of palliative care with The Self-Report Questionnaire (0-10). The second of qualitative methods to deepen quantitative data with achieved data saturation in 5 nurses and 2 doctors. Retrieval of data from May to July 2019. The results were the quality of palliative care performed by nurses had a score of 6.68, for doctors were 5.19. The lowest score (5.29) was found in the emotional support, and organizational domain for ICU clinicians for nurses with the theme of the role of coworkers and the desire to act alone, for doctors the lowest score (3.93) was spiritual support for patients family with the theme of the absence of operational standards of spiritual support procedures and knowledge and experience of spiritual support. The conclusion is the quality of palliative care services performed by nurses has a score of 6.68 and for doctors was 5.19.
Background: Advance care planning (ACP) is recommended to align treatment with patient goals, although there has been little study of the impact of ACP on in-hospital stroke treatment.
Objective: To examine the association between ACP and transitions to comfort measures after stroke.
Design: Prospective cohort study.
Setting/Subjects: Hospitalized stroke patients 45 years and older and surrogate decision makers from a population-based study in Corpus Christi, TX.
Measurements: Surrogates were interviewed to assess presence of patient prestroke ACP, categorized as none, informal conversations only, or formal documentation. Patient records were reviewed for time from admission to transition to comfort measures only (CMO) (defined as in-hospital comfort measures or discharge with hospice services). Cox proportional-hazards models assessed the relationship between ACP and time to transition to CMO.
Results: Of 148 included stroke patients, 37% transitioned to CMO (median time five days). For ACP, 44% had only informal conversations, 38% had formal documentation (98% of which also reported informal conversations), and 18% had neither. After adjustment for age, severity, and baseline disability, informal conversations alone (hazard ratio [HR] 3.55; 95% confidence interval [CI]: 1.35-9.33) and formal documentation (HR 2.85; 95% CI: 1.05-7.72) were associated with earlier transition to comfort measures compared to no ACP. There was no difference between formal documentation and informal conversations on time to comfort measures (HR 0.80, 95% CI: 0.40-1.63).
Conclusions: There was no additional association of formal ACP documentation over informal conversations on time to transition to comfort measures after stroke. Further study of formal ACP is warranted.
PURPOSE: The purpose of this quality improvement project was to increase pharmacist involvement in the outpatient hospice transition process to improve care of veterans, prevent medication errors, and to ensure medications are provided to the patient via the appropriate pharmacy.
METHODS: This project began with implementation of a pilot process for the pharmacist to complete medication reconciliation for each patient admitted to non-Veterans Affairs (VA) hospice care from the Omaha VA Medical Center. The second step of this project was completion of a retrospective chart review of the interventions made. Statistical analysis was completed via descriptive statistics.
RESULTS: A total of 21 patients were eligible for this study. The mean age was 78 years. The average total number of medications per veteran before and after medication reconciliation for VA meds were 13 and 4 and for non-VA meds were 4 and 6, respectively. The average total cost savings for one fill of all medications changed to non-VA was estimated to be $40.08. The pharmacist noted on average 12.6 medication discrepancies during medication reconciliation per veteran. Just less than half of the clinical recommendations made by the pharmacist were accepted by the providers.
CONCLUSIONS: All veterans admitted to non-VA hospice care had at least one medication discrepancy noted by the pharmacist during medication reconciliation. A majority of the veterans had at least one VA medication changed to non-VA since hospice was now prescribing and providing. The cost savings on average appear to outweigh the time spent on medication reconciliation by the pharmacist.
BACKGROUND: This study introduces an empirical approach for studying the role of prudence in physician treatment of end-of-life (EOL) decision making.
METHODS: A mixed-methods analysis of transcripts from 88 simulated patient encounters in a multicenter study on EOL decision making. Physicians in internal medicine, emergency medicine, and critical care medicine were asked to evaluate a decompensating, end-stage cancer patient. Transcripts of the encounters were coded for actor, action, and content to capture the concept of Aristotelian prudence, and then quantitatively and qualitatively analyzed to identify actions associated with preference-concordant treatment.
RESULTS: Focusing on codes that describe characteristics of physician-patient interaction, the code for physicians restating patient preferences was associated with avoiding intubation. Multiple codes were associated with secondary measures of preference-concordant treatment.
CONCLUSIONS: Prudent actions can be identified empirically, and research focused on the virtue of prudence may provide a new avenue for assessment and training in EOL care.
OBJECTIVE: In the field of palliative care (PC) as it is integrated into heart failure (HF) treatment, it is essential to explore the patient experience and build on this knowledge for the further development of PC practice and policy. Based on an intervention study, this paper explores what patients with HF find significant in integrated sessions using a narrative S' approach.
DESIGN: We conducted a semistructured interview study with a qualitative analysis focused on meaning making. The study follows the guidelines of Consolidated Criteria for Reporting Qualitative Research.
PARTICIPANTS AND SETTING: The inclusion criteria for the PC intervention were (1) a new diagnosis of HF, (2) follow-up treatment at this local Danish HF clinic and (3) informed consent to participate in the integrated PC intervention. The only exclusion criterion was if the patient was already engaged in a PC programme. 20 patients agreed to participate in the intervention, and 12 of these completed the S' approach sessions and participated in this interview study.
RESULTS: Overall, the analysis showed that the integrated S' approach sessions were successful in joining an embodied patient perspective with a medical perspective. The thematic analysis resulted in three themes supporting the overall findings: sessions bring comfort, telling your story provides a sense of meaningfulness, and integrating perspectives of HF into everyday life.
CONCLUSION: The method using the S' approach in integrated PC and HF sessions was significant in various ways. First, patients experienced a calm and safe atmosphere and perceived that the nurse was truly interested in them. Second, the integrated sessions based on the S' approach were able to bring comfort to lived physical, psychosocial and existential issues. Last, it allowed patients to combine their embodied understanding of HF with a medical perspective, thereby finding meaning in the sense of how everything is connected.
Context: The quality of end-of-life care services directly affects the end-of-life quality of life of patients and their families. At present, there are no standard tools in China for assessing the quality of dying and death (QODD) of critical intensive care unit (ICU) patients.
Objectives: This study aimed to introduce the Chinese version of the QODD questionnaire for family members of ICU patients, after transcultural adaptation and validation, to provide an effective instrument for assessing the quality of end-of-life care of ICU patients in China, fill the gap in the evaluation of the quality of end-of-life care of critical ICU patients in China, and offer a theoretical basis and practical guidance during purposeful intervention.
Methods: This study involved the main adult caregivers or principal family members of 149 dying critically ill patients. The original QODD scale was translated using the double forward and backward method. Nine cultural adaptation experts adapted the Chinese version of the QODD scale for completion by family members of ICU patients. Then, we carried out content validity, structural validity, internal consistency, confirmatory factors, and item correlation analysis of the modified scale.
Results: The Chinese version of the QODD for family members of ICU patients was developed after some items were deleted or modified. The content validity index was 0.93, indicating that all items were correlated with the measurement of death quality. The Kaiser-Meyer-Olkin value was 0.797, suggesting that the correlations between items were high. The Cronbach's a was 0.865, indicating good internal consistency. In confirmatory factor analysis, the fit indices were 2 = 207.327, non-normed fit index = 0.916, root mean square error of approximation = 0.033, and comparative fit index = 0.93, indicating a good fit of the five-factor model of the Chinese version of the QODD questionnaire for family members of ICU patients.
Conclusion: The Chinese version of the QODD questionnaire for family members of ICU patients is a reliable and effective instrument for evaluating the quality of death among patients who die in the ICU and can be applied to clinical practice and research.
Despite growing understanding in recent years of the biological, psychological, social, environmental and spiritual aspects of dementia, people with advanced dementia continue to experience inequalities in accessing healthcare capable of improving their lives. The complexities of advanced dementia challenge professional competence and demand the highest level of skilled, compassionate care. This article, the last in a series on living with advanced dementia, considers the status and direction of palliative care as it applies to people with dementia and explores contemporary issues regarding advanced dementia and end of life, with a focus on guidance for practitioners and support for best practice. It identifies that open communication, clear information and a person-centred approach adopted as early as possible in the syndrome can make this period less distressing. Crucially, people at the end of life should be offered care in line with best practice in palliative and end of life approaches.
BACKGROUND: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff.
AIM: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice.
DESIGN: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative.
DATA SOURCES: Seven databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges.
RESULTS: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy).
CONCLUSION: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.
Introduction : De nos jours 16 % des patients morts à l’hôpital décèdent aux urgences ou dans l’unité d’hospitalisation de courte durée. De fait, la décision de limitations et/ou d’arrêts des thérapeutiques actives (LATA) est souvent prise aux urgences. Les droits des malades concernant la fin de vie ont été renforcés en 2016 par la Loi Caeys-Leonetti. Notre étude a pour but d’évaluer les modalités et le contexte de la mise en place des LATA aux urgences du CHU d’Amiens afin de savoir si ces pratiques sont conformes aux recommandations et si le cadre réglementaire en est bien respecté.
Méthode : Il s’agit d’une étude observationnelle rétrospective descriptive au sein du service des urgences du CHU d’Amiens du 01 avril 2015 au 30 juin 2019. Ont été inclus les dossiers des patients ayant consulté aux urgences et pour lesquels un questionnaire de mise en place de LATA a été rempli.
Résultats : Cinq cent trois dossiers au total ont été inclus. La quasi-totalité des dossiers (99,8 %) comportaient le nom du médecin référent. De même, les décisions de LATA étaient prises de manière collégiale avec au moins un autre médecin dans la majorité des dossiers (93,2 %). En revanche, la personne de confiance n’était mentionnée que dans deux tiers des dossiers (67,3 %) et l’équipe paramédicale n’était mentionnée que dans un tiers des dossiers (34,1 %).
Conclusion : La mise en place d’un questionnaire relatif aux LATA dans le dossier médical favorise une prise en charge collégiale aux urgences. Ces décisions restent perfectibles, les 2 principaux points d’amélioration sont l’identification et l’information de la personne de confiance ainsi que la traçabilité de la consultation de l’équipe paramédicale dans les dossiers.
CONTEXT: Slow codes, which occur when clinicians symbolically appear to conduct advanced cardiac life support but do not provide full resuscitation efforts, is ethically controversial.
OBJECTIVES: To describe the use of slow codes in practice and their association with clinicians' attitudes and moral distress.
METHODS: We conducted a cross-sectional survey at Rush University and University of Chicago in January 2020. Participants included physician trainees, attending physicians, nurses and advanced practice providers who care for critically ill patients.
RESULTS: Of the 237 respondents to the survey (31% response rate, n=237/753), almost half (48%) were internal medicine residents (46% response rate, n=114/246). Over two-thirds of all respondents (69%) reported caring for a patient where a slow code was performed, with a mean of 1.3 slow codes (SD 1.7) occurring in the past year per participant. A narrow majority of respondents (52%) reported slow codes are ethical if the code is medically futile. Other respondents (46%) reported slow codes are not ethical, with 19% believing no code should be performed and 28% believing a full guideline consistent code should be performed. Most respondents reported moral distress when being required to run (75%), do chest compressions for (80%) or witness (78%) a cardiac resuscitation attempt they believe to be medically futile.
CONCLUSION: Slow codes occur in practice, even though many clinicians ethically disagree with their use. The use of cardiac resuscitation attempts in medically futile situations can cause significant moral distress to medical professionals who agree or are forced to participate in them.
L'expérience clinique de l'isolement protecteur en hématologie est un temps vécu et "imposé", une expérience humaine liant isolement et solitude. Entre envie et peur de l'extérieur, besoins d'avoir et de freiner les relations, sentiment de pénibilité et de plaisance à penser à soi, parmi tant d'autres ressentis, ces patients vivent des phases particulières dans cette chambre. Là, réside peut-être toute la complexité de la solitude.
BACKGROUND: Although the culture in burns/critical care units is gradually evolving to support the delivery of palliative/end of life care, how clinicians experience the end of life phase in the burn unit remains minimally explored with a general lack of guidelines to support them.
AIM: To explore the end of life care experiences of burn care staff and ascertain how their experiences can facilitate the development of clinical guidelines.
DESIGN: Interpretive-descriptive qualitative approach with a sequential two phased multiple data collection strategies was employed (face to face semi-structured in-depth interviews and follow-up consultative meeting). Thematic analysis was used to analyze the data.
SETTING/PARTICIPANTS: The study was undertaken in a large teaching hospital in Ghana. Twenty burn care staff who had a minimum of 6 months working experience completed the interviews and 22 practitioners participated in the consultative meeting.
RESULTS: Experiences of burn care staff are complex with four themes emerging: (1) evaluating injury severity and prognostication, (2) nature of existing system of care, (3) perceived patient needs, and (4) considerations for palliative care in burns. Guidelines in this regard should focus on facilitating communication between the patient and family and staff, holistic symptom management at the end of life, and post-bereavement support for family members and burn care practitioners.
CONCLUSIONS: The end of life period in the burn unit is poorly defined coupled with prognostic uncertainty. Collaborative model of practice and further training are required to support the integration of palliative care in the burn unit.
In the Netherlands during the past decade, a growing number of people with dementia (PWDs) requested euthanasia, and each year more of such requests were granted. We aimed to get quantitative insights in problems and needs general practitioners (GPs) have when confronted with a euthanasia request by a person with dementia (PWD). A concept survey was composed. Expert validity of the survey was achieved through pilot testing A postal survey was sent to a random sample of 900 Dutch GPs, regardless their opinion on or practical experience with euthanasia. Collected data were analysed with descriptive statistics. Of 894 GPs, 423 (47.3%) completed the survey, of whom 176 (41.6%) had experience with euthanasia requests from PWDs. Emotional burden was reported most frequently (86; 52.8%), as well as feeling uncertain about the mental competence of the PWD (77; 47.2%), pressure by relatives (70; 42.9%) or the PWD (56; 34.4%), and uncertainty about handling advance euthanasia directives (AEDs) (43; 26.4%). GPs would appreciate more support by a SCEN physician (an independent physician for support, information and formal consultation around euthanasia). (291; 68.8%), a geriatric consultation team (185; 43.7%), the end-of-life clinic (184; 43.5%), or a palliative care consultation team (179; 42.3%). Surprisingly the need for moral deliberation was hardly mentioned. The reported burden and the rise in numbers and complexity of euthanasia requests from PWDs warrants primary care support by easier access to colleagues with expertise and training on end of life care needs of patients with dementia and their caregivers.