Depuis le premier plan Cancer 2003-2007 issue de la mission interministérielle pour la lutte contre le cancer, le médecin appuie sa démarche de prise en charge sur la mesure 40, le dispositif d’annonce. Néanmoins, les modalités d’annonce de l’arrêt des traitements spécifiques ne sont pas clairement spécifiées comme elles peuvent l’être en réanimation médicale ou en oncologie pédiatrique.
Nous avons mené une étude sur la base d’entretiens semi-directifs et dont les objectifs étaient de rechercher, dans différents domaines et dimensions, les éléments constitutifs du vécu des oncologues libéraux à cette annonce. Pour créer notre guide d'entretien, nous avons construit un protocole de validation puis nous avons interrogé six médecins.
Notre enquête a permis de constater qu'il existait des similitudes dans les observations et les difficultés rencontrées lors l’élaboration de cet évènement. Il s’agit d’un tournant dans le parcours de soins signifiant l’arrêt du combat contre le cancer et l’annonce de la mort. Dès lors, la communication, les échanges prennent une place essentielle, thérapeutique. Les soins oncologiques de support s’intensifient, les soins palliatifs se précisent, le travail en équipe s’organise à travers la multidisciplinarité. Le médecin s’expose d’avantage et plus profondément dans la dimension psychique et psychologique.
Ce travail a permis de soulever des pistes de réflexion sur les préconisations à promouvoir : la démarche médicale dans les situations de limitations et d’arrêt de traitements, l’intégration du vécu psychique des intervenants et des personnes concernées, la conception de la vérité des évènements et de leur énonciation.
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Le Quotidien du médecin hebdo publie, en partenariat avec le Centre national des soins palliatifs et de la fin de vie, une sondage sur la loi Leonetti-Claeys. Les Français comptent davantage sur la personne de confiance que les directives anticipées. Un constat en léger décalage avec l'esprit de la loi.
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L’accompagnement de la fin de la vie tend vers la bientraitance dans les soins, dès l’annonce du diagnostic et durant tout le parcours médical jusqu’au décès. La démarche palliative donne des repères concernant cet accompagnement bienveillant issus du cadre législatif français, de recherches scientifiques internationales, de notre pratique, nos présupposés, notre sensibilité. En Soins Palliatifs (SP), la loi de 2016 régit les derniers temps de la vie en introduisant 3 nouveaux droits : le droit à ne pas subir l’obstination déraisonnable, le droit pour la personne d’être respectée dans sa volonté (notamment par la possibilité de rédiger les Directives Anticipées [DA]), le droit à être soulagé de la douleur et de la souffrance. Cette loi est-elle satisfaisante ? Permet-elle aux français de se donner le choix de leur fin de vie ? Alors que les français accueillent favorablement le droit à la rédaction de DA, peu les ont réellement rédigées (14 %). Que veulent exactement les français pour la fin de leur vie ? Comment ouvrir un espace de parole propice au dialogue sur les souhaits et peurs de la personne en fin de vie ? Ces questions posées par le débat sociétal risquent-elles de favoriser l’évolution de la législation vers le droit à l’euthanasie ou le suicide assisté ? Nous développerons une réflexion étayée par la revue de la littérature internationale et française.
Why is the transition from "living" to "dying" not socially marked in the same way that death is marked? This question is addressed using classical anthropological theory, which highlights the significance of liminality, the transitional period during a rite of passage. Seriously ill and dying patients are subject to social vulnerabilities as they approach the end of life. Clinicians' awareness of these factors may improve their patients' care.
One of the many roles a physician provides to their patients is compassion and comfort, which includes tending to any psychological, spiritual, and religious needs the patient has. The goal of this pilot study was to explore whether religious or spiritual values of physicians at an urban academic hospital affect how physicians care for and communicate with their patients, especially when dealing with death, dying, and end-of-life matters. After surveying 111 inpatient physicians at an academic hospital, we found that 92% of physicians are extremely or somewhat comfortable having end-of-life discussions. We also found that physician religiosity and spirituality are not necessarily required for discussing death and dying and that the religious and spiritual values of the physician do not correlate with their ability to have end-of-life conversations with the patient. We found no difference between years in practice and comfort discussing religion and spirituality, though we did find that, of the physicians who believe they are comfortable talking to patients about religion or belief systems, most of them had more than five end-of-life patients in the past 12 months. Lastly, referrals to Palliative Care or pastoral services were not impacted by the physician's religious or spiritual beliefs. Future studies can explore how religious beliefs may more subtly influence physicians' interactions with patients, patient satisfaction, and physician well-being and resilience.
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.
CONTEXT: Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life.
OBJECTIVE: To explore patient and caregiver understanding and valuation of "continuity of care" while transitioning from an in-hospital to a home-based palliative care team.
METHODS: Longitudinal qualitative design using semi-structured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio recorded and transcribed verbatim. Data were analyzed using thematic analysis within a post-positivist framework. Thirty-nine participants (18 patients, 7 caregivers and 7 patient-caregiver dyads) were recruited from two acute care hospitals wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care.
RESULTS: Patients had a mean age of 68, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers.
CONCLUSION: Patients' and their caregivers' valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.
In 2002, the Dutch Euthanasia Act was put in place to regulate the ending of one's life, permitting a physician to provide assistance in dying to a patient whose suffering the physician assesses as unbearable. Currently, a debate in the Netherlands concerns whether healthy (older) people who value their life as completed should have access to assistance in dying based on their autonomous decision making. Although in European law a right to self-determination ensues from everyone's right to private life, the Dutch Supreme Court recently adopted a position on whether the Dutch Euthanasia Act lacks adequate attention to a patient's autonomous decision making. Specifically, in the Albert Heringa case, the Court ruled that the patient-physician relationship as understood in the Dutch Euthanasia Act limits this plea for more self-determination. This ethical analysis of the Heringa case examines how the Supreme Court's understanding of the Euthanasia Act defines patient autonomy within a reciprocal patient-physician relationship.
Advance care planning (ACP) is considered a pivotal aid in the decision-making process, especially for many people living with dementia, who inevitably will lose the capacity to make decisions at the end of life. In Italy, ACP has been recently regulated by law 219/2017, leading to the investigation of how physicians deal with ACP in dementia. In order to comprehend the perception of physicians who provide care for patients with dementia regarding ACP and to describe their difficulties and needs, this study presents the results of a qualitative research study performed within a local health authority in northern Italy. Data were collected by semi-structured interviews with 11 physicians dealing with patients with dementia and were analysed using interpretative phenomenological analysis. Four superordinate themes were identified, describing both the difficulties and challenges perceived by physicians in performing shared ACP in their daily activities. This study demonstrates that physicians experience troubles synchronizing the time of shared ACP with the more rapid development of dementia. Results also suggest that further training about communication on ACP is urgently required to ease the implementation of shared ACP. A broader involvement of institutions and other professionals is also important in spreading ACP among healthcare institutions.
Background: Advance care planning (ACP) is a process that supports adults in understanding and sharing their personal values, life goals, and preferences regarding future medical care. We examined the current status of ACP and end-of-life (EOL) communication between oncologists and patients with metastatic breast cancer.
Materials and Methods: e conducted a survey among 41 institutions that specialize in oncology by using an online tool in October 2019. Participants (118 physicians) from 38 institutions completed a 39-item questionnaire that measured facility type and function; physicians’ background and clinical approach, education about EOL communication, and understanding about ACP; and the current situation of ACP and EOL discussions.
Results: Ninety-eight responses concerning physicians’ engagement in ACP with patients were obtained. Seventy-one (72%) answered that they had engaged in ACP. Among these, 23 (33%) physicians used a structured format to facilitate the conversation in their institutions, and only 6 (8%) settled triggers or sentinel events for the initiation of ACP. In the multivariable analysis, only the opportunity to learn communication skills was associated with physicians’ engagement with ACP (odds ratio: 2.8, 95% confidence interval: 1.1–7.0). The frequency and timing of communication about ACP and EOL care with patients substantially varied among the oncologists. Communication about patients’ life expectancy was less frequent compared with other topics.
Conclusion: The opportunity to improve EOL communication skills promoted physicians’ engagement with ACP among patients with metastatic/advanced breast cancer. However, there were still substantial variabilities in the method, frequency, and timing of ACP and EOL communication among the oncologists.
Implications for Practice: This study found that the opportunity to improve end-of-life (EOL) communication skills promoted physicians’ engagement in advance care planning (ACP) among patients with metastatic/advanced breast cancer. All oncologists who treat said patients are encouraged to participate in effective education programs concerning EOL communication skills. In clinical practice, there are substantial variabilities in the method, frequency, and timing of ACP and EOL communication among oncologists. As recommended in several clinical guidelines, the authors suggest a system that identifies patients who require conversations about their care goals, a structured format to facilitate the conversations, and continuous measurement for improving EOL care and treatment.
OBJECTIVES: Although general practice is an ideal setting for ensuring timely initiation of advance care planning (ACP) in people with chronic life-limiting illness, evidence on the effectiveness of ACP in general practice and how it can be implemented is lacking. This study aims to evaluate feasibility and acceptability of study procedures and intervention components of an intervention to facilitate the initiation of ACP in general practice for people with chronic life-limiting illness.
METHODS: Pilot cluster-randomised controlled trial testing a complex ACP intervention in general practice versus usual care (ClinicalTrials.gov: NCT02775032). We used a mixed methods approach using detailed documentation of the recruitment process, questionnaires and semi-structured interviews.
RESULTS: A total of 25 general practitioners (GPs) and 38 patients were enrolled in the study. The intervention was acceptable to GPs and patients, with GPs valuing the interactive training and patients finding ACP conversations useful. However, we found a number of challenges regarding feasibility of recruitment procedures, such GP as recruitment proceeding more slowly than anticipated as well as difficulty applying the inclusion criteria for patients. Some GPs found initiating ACP conversations difficult. The content of the patient booklet was determined to potentially be too complex for patients with a lower health literacy.
CONCLUSION: Although the intervention was well-accepted by GPs and patients, we identified critical points for improvement with regard to the study procedures as well as potential improvements of the intervention components. When these points are addressed, the intervention can proceed to a large-scale, phase III trial to test its effectiveness.
The family meeting is an essential component of effective palliative care (PC); however, medical students and junior doctors-in-training often consider leading a family meeting to be a daunting task. The old "see one, do one, teach one" axiom should not apply in preparing trainees to conduct a family meeting. After a review of the literature on established PC curricula, trainee perceptions of their PC educational experiences, and documented educational interventions in preparing trainees to conduct a family meeting, we have compiled a list of 10 tips for clinical educators to consider in assisting their students to feel better equipped to conduct productive family meetings.
Serious illness conversations (SICs) are integral to the optimal care of the vast and growing population of seriously ill patients, but they are undertaught in health professions training and widely feared, delayed, or altogether avoided by clinicians. To redress this predicament, medical communication experts have published a variety of communication models designed to aid and promote SIC facilitation. We three clinician-educators are among their many beneficiaries. Yet despite their value, our experience in communication education and clinical encounters has revealed three recurring impediments to their instruction, retention, and usefulness. Although to our knowledge they have not been empirically evaluated, these pedagogic and practical weaknesses are potentially explained by both learning theory and mnemonics scholarship: 1) learning different communication models for different types of SICs demands multiple rounds of information recoding and consolidation into long-term memory, which may overwhelm learners' cognitive load capacity; 2) ostensibly sequential mnemonics (e.g., acronyms) that incorporate nonsequential components may burden working memory, compromise incorporation into long-term memory, and if recalled, muddle the very communication process they are designed to simplify; and 3) content that is selected to conform to a memorable mnemonic, rather than vice versa, may strain the language, increase the number and complexity of elements to be encoded and decoded, and thereby challenge retention and recall.
In 2002, the Dutch Euthanasia Act was put in place to regulate the ending of one's life, permitting a physician to provide assistance in dying to a patient whose suffering the physician assesses as unbearable. Currently, a debate in the Netherlands concerns whether healthy (older) people who value their life as completed should have access to assistance in dying based on their autonomous decision making. Although in European law a right to self-determination ensues from everyone's right to private life, the Dutch Supreme Court recently adopted a position on whether the Dutch Euthanasia Act lacks adequate attention to a patient's autonomous decision making. Specifically, in the Albert Heringa case, the Court ruled that the patient-physician relationship as understood in the Dutch Euthanasia Act limits this plea for more self-determination. This ethical analysis of the Heringa case examines how the Supreme Court's understanding of the Euthanasia Act defines patient autonomy within a reciprocal patient-physician relationship.
The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
Purpose: To investigate difficulties doctors experience during life-sustaining treatment (LST) discussion with seriously ill patients and their families after enactment of the LST Decisions Act in February 2018.
Materials and Methods: A cross-sectional survey was conducted in a tertiary hospital in the Republic of Korea in August 2019. 686 doctors who care for seriously ill patients were given a structured questionnaire, and difficulties during the discussion were examined.
Results: 132 doctors completed the questionnaire. 85% answered they treat cancer patients. Most (86.4%) experienced considerable difficulties during LST discussions (mean score, 7.4 ± 1.6/10). The two most common difficulties were communication with patients and family and determining when to discuss LST. Two-thirds of doctors found direct discussions with the patient difficult and said they would initiate LST discussions only with family. LST discussions were actually initiated later than considered appropriate. When medically assessing whether the patient is imminently dying, 56% of doctors experienced disagreements with other doctors, which could affect their decisions.
Conclusion: This study found that most doctors experienced serious difficulties regarding communication with patients and family and medical assessment of dying process during LST discussions. To alleviate these difficulties, further institutional support is needed to improve the LST discussion between doctors, patients, and family.
IMPORTANCE AND OBJECTIVE: Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.
DESIGN: For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).
SETTING AND PARTICIPANTS: Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations.
MAIN OUTCOMES: Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.
RESULTS: Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context.
CONCLUSIONS: Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.
Palliative care and advance care planning (ACP) from the first diagnosis of glioblastoma are important. This questionnaire survey was conducted to understand the current status of palliative care for brain tumors in Japan. Representative characteristics of Japan in comparison with Western countries (P <0.01) are described below: (1) Gender ratio of male in physicians who treat brain tumors in Europe and the United States/Canada are about 70%, but 94% in Japan. (2) The specialty is predominantly neurosurgeon (93%) in Japan. The ratio of neurologists is predominantly 40% in Europe. In the United States/Canada, neurologist (27%) and neurosurgeon (29%) are main parts. (3) Years of medical experience over 15 in physicians is 73% in Japan. Proportions of those with over 15 years are 45% in Europe and 30% in the United States/Canada. (4) In practicing setting, the rate of academic medical centers is about 80% in Europe and the United States/Canada, and ~60% in Japan. Representative differences compared with past domestic data (2007) (p<0.01): (1) In glioblastoma, the rate of explaining about median survival time increases from 39% (2007) to 80% (2018). Explanation about medical conditions to the patient himself with his family increases from 20% (2007) to 39% (2018). (2) Place of death: The rate at hospital is decreasing from 96% (2007) to 79% (2018) and at home is increasing from 3% (2007) to 10% (2018) (3) The rate of ventilator in adult has decreased from 74% (2007) to 54% (2018), but nasal tube feeding has remained unchanged from 62% (2007) to 60% (2018). These results will be shared with physicians to make better care systems for patients with brain tumors.
Medical aid in dying (MAID) is a practice in which a physician provides a competent adult with a terminal illness with a prescription for a lethal dose of a drug at the request of the patient, which the patient intends to use to end his or her life. MAID currently is legal in nine states and the District of Columbia. The most common concerns leading to requests for MAID include loss of autonomy, loss of ability to participate in activities that make life enjoyable, and loss of dignity. MAID remains controversial. Physicians can choose not to participate in MAID and many are prohibited from participating by their employers. Family physicians should have the knowledge and skills to respond to inquiries about MAID in a compassionate, patient-centered manner. Clinicians should be familiar with the legal status of MAID in the state in which they practice, understand eligibility requirements for participation, have access to resources to support patients and clinicians, and be able to apply various communication strategies to MAID discussions. A thoughtful exploration of what led the patient to inquire about MAID will allow the physician to better understand and respond to patient concerns regarding the final months of life.
Because of their longstanding relationships with patients, family physicians often are in the best position to identify signs of serious illness progression, provide support and guidance to patients and caregivers, and tailor care plans to individual needs and preferences at the end of life. Significant signs of illness progression include worsening of one or more conditions, decline in function, and increase in the number of emergency department visits or hospitalizations. Prognostication refers to estimation of the remaining life expectancy. Several tools are available to inform such estimates. Prognostication should include discussion of the expected illness progression to help patients and family members prepare, plan, and cope. Advance care planning, ideally started before or early in the course of illness, should include identification of patient surrogate decision-makers as well as a discussion of patient values, priorities, and care preferences. Planning should continue and evolve to inform care plans that match patient and family member priorities at each stage of illness. Family physicians should be familiar with resources available in their communities to support care plans, including palliative care subspecialists, home- and facility-based palliative care teams, and hospice physicians.