L'autonomie est considérée comme un des quatre piliers de l'éthique dans la littérature internationale. Cette notion monte en puissance dans le monde contemporain. Que faut-il voir dans ce phénomène ? Comment le penser philosophiquement ? pourquoi accorder une place toujours plus importante dans les décisions au patient ? L'auteur tente de répondre à ces questions en s'appuyant notamment sur les différentes avis du CCNE.
Qu'est-ce que le consentement à la décision médicale pour le patient ? L'auteur revient sur plusieurs notions : consentement, volonté, décision médicale, soins pour ensuite développer son propos sur les populations concernées par le consentement, le cadre, la qualité ou l'intégrité du consentement dans un cadre de soins.
il y a une gigantesque évolution de la relation patient-soignant depuis une trentaine d'années en France. L'auteur s'appuie sur son cham de compétences, à savoir la philosophie du droit pour en parler. Il développe son propos en trois points : évolution du droit français en lien avec l'évolution de la place du patient, articulation entre responsabilité juridique des soignants et droits des malades et pour terminer statut des directives anticipées pour comprendre la nature de la volonté du patient.
L’accompagnement médical de la vie finissante a évolué très fortement ces dernières décennies. Les décisions d’arrêts de traitements susceptibles de prolonger la vie sont devenues la norme des fins de vie en réanimation. Ailleurs la pratique de la sédation influence souvent le moment de la mort en raccourcissant la durée des agonies. L’intention du médecin de faire mourir son malade doit être reconnue et clairement assumée. Mais elle est secondaire par rapport à ce que souhaite le malade lui-même dans sa fin de vie. Quand celui-ci n’est plus capable de s’exprimer, les membres de sa famille ou ceux qu’il a désignés peuvent déterminer ce qu’aurait été sa volonté. Alors le médecin peut s’appuyer sur ces informations pour que le malade décède dans les meilleures conditions possibles correspondant à ses souhaits y compris un raccourcissement de son agonie. Radicalement autre est l’acte euthanasique réservé à ceux qui sont capables de demander une mort lucide et volontaire dans les conditions légales des pays qui l’ont rendu possible.
Depuis le début des années 2000, l’une des priorités du législateur réside dans le respect de la volonté du patient, cela même si ce dernier n’est plus en mesure de l’exprimer. Or, comment tenir compte de la volonté d’une personne qui n’est plus en capacité de la faire connaître ? Les mesures anticipatives ont pour raison d’être d’apporter une réponse à cette question. Ainsi, diverses institutions coexistent dans notre paysage juridique, afin de permettre aux personnes d’organiser leur vie future pour le cas où elles viendraient à ne plus pouvoir gouverner par elles-mêmes leur existence et pourvoir seules à leurs intérêts : le mandat de protection future, la désignation d’une personne de confiance et les directives anticipées.
Confronté aux situations de fin de vie, le droit se suffit-il à lui-même, parvient-il à lui seul à guider la décision médicale dans le sens du meilleur intérêt du malade ? Ne convient-il pas de prendre en compte les valeurs et considérations éthiques pour interpréter, compléter, parfois même adapter les règles de droit dans ce contexte d’extrême vulnérabilité ? Cette démarche se révèle aujourd’hui essentielle pour l’application effective du droit qui demeure, quoi qu’il en soit, bien délicate dans ces instants d’humanité si singuliers.
Pour les patients admis en unité de soins palliatifs (USP), les directives anticipées (DA) pourraient être un outil permettant de connaître leurs volontés et de s'inscrire dans le respect de leur autonomie. Cependant, les DA sont rarement rédigées ou peu contributives. Cette étude a pour objectif d'évaluer la faisabilité de la co-construction des DA en USP. La méthode utilisée est qualitative, celle d'une recherche-action. Elle a été réalisée sur deux mois dans l'USP du CHU de Bordeaux. Il a été proposé à des patients éligibles de co-construire leurs DA avec l'aide d'un médecin au cours d'un entretien semi-directif à propos des soins et de l'accompagnement de leur fin de vie. Une analyse de contenu des entretiens a été réalisée, suivie d'une évaluation du processus par un questionnaire de satisfaction. Sur les 28 patients hospitalisés dans l'USP sur cette période, douze étaient éligibles pour participer à l'étude. Sept patients ont accepté, mais l'état de santé de cinq d'entre eux s'est rapidement aggravé et seulement deux entretiens ont finalement pu être réalisés. Les difficultés mises en évidence pour la réalisation des DA sont le choix du moment adéquat pour initier la démarche et la nécessité d'adaptation au patient et à la situation. Néanmoins, cette co-construction a semblé permettre une meilleure contextualisation des DA dans le sens d'une démarche globale. La rédaction des DA a été difficilement réalisable du fait de la phase avancée de la maladie chez les personnes concernées. Il semblerait nécessaire d'anticiper l'information sur les DA plus précocement, comme par exemple durant la phase des traitements spécifiques. De plus, une co-construction des DA pourrait améliorer leur pertinence et leur utilité.
OBJECTIVE: The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as "catalysts" for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.
METHOD: The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.Result : Findings suggested that an optimal self-management resource should encourage pain reporting, build patients' sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.
SIGNIFICANCE OF RESULTS : Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.
BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers.
METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival.
RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment.
CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.
Objective: Cancer patients face many health challenges, including spiritual issues. Therefore, an awareness of health-care providers' perspective on spiritual care provision is important. This study aimed to determine health-care providers' perception of spiritual care and to examine the individual barriers to its implementation in cancer patients.
Methods: The present descriptive study included 136 physicians and nurses. The Spiritual Care Survey was used as a research tool. Data were analyzed through descriptive statistics using IBM SPSS Statistics for Windows, version 20.0.
Results: In this study, 70.6% of the participants considered spiritual care to be influential in the patients' quality of life. However, 64.7% had received no spiritual care training, while 82.4% indicated a willingness to attend these courses. Regarding the obstacles to providing spiritual care, the highest and lowest scores, respectively, belonged to the lack of time and the person's reluctance to talk about spiritual issues.
Conclusions: Spiritual care has not yet found its proper place in the care setting of Iran, and health-care team members do not have sufficient training to provide this kind of care despite their belief in its positive impact on patients' quality of life.
OBJECTIVE: The aim of this study was to describe preferences for a good death among Chinese patients with advanced cancer and then to explore factors contributing to their preferences including patient demographics and disease variables.
METHODS: A convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. A Chinese version of the Good Death Inventory (GDI) was used to measure patients' preferences for dying and death. Besides, data were collected using a multi-itemed questionnaire focusing on demographic and disease characteristics of patients.
RESULTS: Of the 275 questionnaires returned, 248 responses were analysed (effective response rate 90.2%). According to the total scores for each of the 20 domains, the five most important domains of a good death were: good relationship with family (19.80±2.39), independence (19.66±2.56), maintaining hope and pleasure (19.56±2.55), good relationship with medical staff (18.92±3.73), not being a burden to others (18.89±3.30). Patients' characteristics including age, educational status, religious belief, medical payment types, family economic status, past experiences of the death of others, the period since cancer diagnosis, past experiences of hospitalisation and subjective physical condition influenced their preferences for a good death (all p<0.05).
CONCLUSIONS: We had an in-depth knowledge and understanding of their preferences for good death among Chinese patients with advanced cancer. Meanwhile, we found some patients' factors contributed to different preferences for a good death. These findings have the potential to guide hospice care services aimed at achieving a good death for patients with advanced cancer.
CONTEXT: The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be conducted.
OBJECTIVES: To synthesise literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions.
METHODS: Systematic review of reviews RESULTS: We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardisation in research and practice.
CONCLUSIONS: Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patient and carer preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardisation and flexibility might both be realised.
PURPOSE: Early integration of outpatient palliative care (OPC) benefits patients with advanced cancer and also the health care systems in which these patients are seen. Successful development and implementation of models of OPC require attention to the needs and values of both the patients being served and the institution providing service.
SUMMARY: In the 2016 clinical guideline, ASCO recommended integrating palliative care early in the disease trajectory alongside cancer-directed treatment. Despite strong endorsement and robust evidence of benefit, many patients with cancer lack access to OPC. Here we define different models of care delivery in four successful palliative care clinics in four distinct health care settings: an academic medical center, a safety net hospital, a community health system, and a hospice-staffed clinic embedded in a community cancer center. The description of each clinic includes details on setting, staffing, volume, policies, and processes.
CONCLUSION: The development of robust and capable OPC clinics is necessary to meet the growing demand for these services among patients with advanced cancer. This summary of key aspects of functional OPC clinics will enable health care institutions to evaluate their specific needs and develop programs that will be successful within the environment of an individual institution.
This article analyses new legislation regulating advance directives in Italy. On 14 December 2017, the Italian Senate passed a Bill regulating end-of-life decisions by codifying patients' rights to self-determination. It is the first law governing advance directives in the Italian legal system. This article studies and critically examines the two types of advance directives through an Italian legal perspective - living wills and nominations of a surrogate. It also applies a legal comparison approach. In its conclusions, this article advances some policy suggestions.
CONTEXT: Although patient and physician characteristics are thought to be predictive of discretionary interventions at the end of life (DIALs), few studies have data on both parties.
OBJECTIVE: Test the hypothesis that patient preferences and physician attitudes are both independently associated with DIALS.
METHODS: We report secondary analyses of data collected prospectively from physicians (n=38) and patients with advanced cancer (n=265) in the Values and Options In Cancer Care (VOICE) study. Predictor variables were patient attitudes toward end-of-life care and physician-reported comfort with medical paternalism, assessed indirectly using a modified version of the Control Preference Scale. We explored whether the magnitude of the physician variable was influenced by the inclusion of particular patient treatment preference variables (i.e., effect modification). Outcomes were a chemotherapy use score (=<14 days before death [scored 2], 15-31 days before death [scored 1], > 31 days [scored 0]) and an Emergency Department (ED) visit/inpatient admission score (>=2 [scored 2], 1, 0) in the last month of life.
RESULTS: Chemotherapy scores were nearly .25 points higher if patients expressed a preference for experimental treatments with unknown benefit at study entry (.238 points (95% CI, 0.047-0.429) or reported an unfavorable attitude toward palliative care (0.247 points, 95%CI, 0.047-0.450). A 2 standard deviation difference in physician comfort with medical paternalism corresponded to standardized effects of .35 (95% CI, 0.03-0.66) for chemotherapy and .33 (95% CI, 0.04-0.61) for ED visits/inpatient admissions. There was no evidence of effect modification.
CONCLUSION: Patient treatment preferences and physician attitudes are independently associated with higher levels of treatment intensity before death. Greater research, clinical, and policy attention to patient treatment preferences and physician comfort with medical paternalism might lead to improvements in care of patients with advanced disease.
BACKGROUND: Cancer patients who have reached the terminal stage despite attempts at treatment are likely to experience various problems, particularly as they encounter increasing difficulty in doing what they were able to do easily, and their physical symptoms increase as the disease advances. The purpose of this study is to explore how terminal cancer patients who have not clearly expressed a depressed mood or intense grief manage their feelings associated with anxiety and depression.
METHODS: Eleven terminally ill patients with cancer who were receiving symptom-relieving treatment at home or in palliative care units were interviewed. Interviews were generally conducted weekly, two to five times for each participant. In total, 33 interviews were conducted, and the overall interview time was 2027 min. Data were analyzed via qualitative methods.
RESULTS: The following five themes were extracted regarding the experience of managing feelings associated with anxiety and depression when facing death: "I have to accept that I have developed cancer," "I have to accept the undeniable approach of my own death," "I have to accept my need for assistance," "I have to accept this unsatisfactory circumstance" and "I have to accept this as my destiny and an outcome of my life."
CONCLUSION: The present study revealed key themes related to how patients come to terms with their impending death. Nurses are required to comprehend the patients' complicated mental patterns that are expressed in their daily languages. Furthermore, the findings clarify the necessity for nurses to help patients understand the acceptance of a terminal disease state during a patient's final days.
BACKGROUND: Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care. The aim of this study is to summarize available strategies and tools for healthcare providers towards successful communication, information provision and/or shared decision-making in supporting patients with limited health literacy in hospital-based palliative care in Western countries.
METHODS: A scoping review was conducted. First, databases PubMed, Embase, CINAHL, and PsycINFO were searched. Next, grey literature was examined using several online databases and by contacting national experts. In addition, all references of included studies were checked.
RESULTS: Five studies were included that showed that there are face-to-face, written as well as online strategies available for healthcare providers to support communication, information provision and, to a lesser extent, (shared) decision-making in palliative care for patients with limited health literacy. Strategies that were mentioned several times were: teach-back method, jargon-free communication and developing and testing materials with patients with limited health literacy, among others. Two supporting tools were found: patient decision aids and question prompt lists.
CONCLUSIONS: To guarantee high quality person-centred palliative care, the role of health literacy should be considered. Although there are several strategies available for healthcare providers to facilitate such communication, only few tools are offered. Moreover, the strategies and tools appear not specific for the setting of palliative care, but seem helpful for providers to support the communication, information provision and decision making with patients with limited health literacy in general. Future research should focus on which strategies or tools are (most) effective in supporting patients with limited health literacy in palliative care, and the implementation of these strategies and tools in practice.
BACKGROUND: Many middle- and high-income countries face the challenge of meeting preferences for home deaths. A better understanding of associated factors could support the design and implementation of policies and practices to enable dying at home. This study aims to identify factors associated with the place of death in Singapore, a country with a strong sense of filial piety.
SETTINGS/PARTICIPANTS: A retrospective cohort of 62,951 individuals (>=21 years old) who had died from chronic diseases in Singapore between 2012-2015 was obtained. Home death was defined as a death that occurred in a private residence whereas non-home deaths occurred in hospitals, nursing homes, hospices and other locations. Data were obtained by extracting and linking data from five different databases. Hierarchical multivariable logistic regression models were used to examine the effects of individual, clinical and system factors sequentially.
RESULTS: Twenty-eight percent of deaths occurred at home. Factors associated with home death included being 85 years old or older (OR 4.45, 95% CI 3.55-5.59), being female (OR 1.21, 95% CI 1.16-1.25), and belonging to Malay ethnicity (OR 1.91, 95% CI 1.82-2.01). Compared to malignant neoplasm, deaths as a result of diabetes mellitus (OR 1.93, 95% CI 1.69-2.20), and cerebrovascular diseases (OR 1.28, 95% CI 1.19-1.36) were also associated with a higher likelihood of home death. Independently, receiving home palliative care (OR 3.45, 95% CI 3.26-3.66) and having a documented home death preference (OR 5.08, 95% CI 3.96-6.51) raised the odds of home deaths but being admitted to acute hospitals near the end-of-life was associated with lower odds (OR 0.92, 95% CI 0.90-0.94).
CONCLUSION: Aside from cultural and clinical factors, system-based factors including access to home palliative care and discussion and documentation of preferences were found to influence the likelihood of home deaths. Increasing home palliative care capacity and promoting advance care planning could facilitate home deaths if this is the desired option of patients.
Access to hospice care is widely provided in Western countries, but the supply of such service is still in its initiative stage in China. As relatives are often involved in end-of-life decision making in China, a better understanding of their cognitions toward hospice care would help policy makers and physicians to overcome the barriers of providing such service. Thus, we conducted the study to assess the level of knowledge and attitudes among Chinese outpatients and family members regarding hospice care.A cross-sectional study was conducted in Peking University Third Hospital and Peking University Shougang Hospital. Trained interviewers recruited outpatients or family members in two hospitals as a convenience sample to complete an anonymous face-to-face survey on demographic information, knowledge, and attitudes regarding hospice care.A total of 550 respondents completed this survey. Only 107 (19.5%) reported that they had known or heard of hospice care, with a mean knowledge score of 2.8 (standard deviation = 1.6). Of the respondents, 69.5% answered "strongly agree" or "agree" regarding the importance of providing hospice care in China. Participants who had known of hospice care were more likely to have favorite attitudes toward it.The awareness rate of hospice care is low in the study, which may lead to poor attitude and low enrollment rate. Considering the increasing evidence to support the improved outcomes of patients and family members associated with hospice care, the public education on its scope of services, benefits, and limitations is needed in China.
This study aimed to investigate physicians' and nurses' knowledge and attitudes toward advance directives (ADs) for cancer patients, which empower patients to take decisions on end-of-life needs if they lose their capacity to make medical decisions. A cross-sectional study was conducted using convenience sampling. The outcomes were responses to the knowledge and attitude questions, and the main outcome variables were the total scores for knowledge and attitudes toward ADs. This study included 281 physicians and nurses (60.5%). Most physicians were men (95, 80.5%), whereas most nurses were women (147, 86.5%). The mean (standard deviation; SD) total knowledge score was 6.8 (4.0) for physicians and 9.1 (3.0) for nurses (p < 0.001). There was a significant difference in the total knowledge score between nurses and physicians, with an adjusted mean difference of 1.54 (95% confidence interval [CI]; 0.08-2.97). Other significant independent predictors of knowledge of ADs were female sex (1.60, 95% CI; 0.27-3.13) and education level (master's versus bachelor's: 1.26, 95% CI; 0.30-2.33 and Ph.D. versus bachelor's: 2.22, 95% CI; 0.16-4.52). Nurses' attitudes appeared to be significantly more positive than those of physicians, and the mean total attitude score (SD) was 19.5 for nurses (6.2) and 15.1 (8.1) for physicians (p < 0.001). The adjusted mean difference (95% CI) for nurses versus physicians was 3.71 (0.57-6.98). All participants showed a high level of knowledge of ADs; however, nurses showed considerably more positive attitudes than physicians.