Les troubles cognitifs sont fréquents chez les patients atteints de sclérose en plaques, avec des degrés d’intensité divers. Ils peuvent impacter de manière significative la vie quotidienne et professionnelle des patients, ainsi que leur qualité de vie. Le dépistage de ces troubles est donc important et les neurologues doivent s’investir dans leur évaluation afin de proposer une prise en charge adaptée. Les liens entre cognition et comportement sont souvent intriqués. Il peut être utile de rappeler le vocabulaire neuropsychologique définissant les différents symptômes les plus souvent observés dans la sclérose en plaques. Ceci permet aussi de visiter clinique et anatomie. Nous proposons un lexique qui définit 118 termes susceptibles d’aider les neurologues dans la compréhension des troubles de la cognition et du comportement chez leurs patients, de faciliter leur écoute dans un entretien, de prescrire quand il le faut une expertise de première ligne ou plus spécialisée, de lire des travaux scientifiques où ces données sont de plus en plus citées et de communiquer en utilisant un vocabulaire commun.
CONTEXT: Care transitions at the end of life are associated with reduced quality of life and negative health outcomes, yet up to half of patients in developed countries experience a transition within the last month of life. A variety of these transitions have been described as 'burdensome' in the literature, however there is currently no consensus on the definition of a burdensome transition.
OBJECTIVES: The purpose of this review is to identify current definitions of 'burdensome transitions' and develop a framework for classifying transitions as 'burdensome' at the end-of-life.
METHODS: A search was conducted in Embase, PubMed, Cochrane Database of Systematic Reviews, Cochrane Controlled Register of Trials, CINAHL and PsychINFO for articles published in English between January 1 2000 and September 28 2019.
RESULTS: A total of thirty-seven articles met inclusion criteria for this scoping review. Definitions of burdensome transitions were characterized by the following features: transition setting trajectory, number of transitions, temporal relationship to end of life, or quality of transitions.
CONCLUSION: Definitions of burdensome transitions varied based on time before death, setting of cohorts, and study population. These definitions can be helpful in identifying and subsequently preventing unnecessary transitions at the end-of-life.
Sedation in palliative care is frequently but controversially discussed. Heterogeneous definitions and conceptual confusion have been cited as contributing to different problems 1) relevant to empirical research, for example, inconsistent data about practice, the ‘data problem’, and 2) relevant for an ethically legitimate characterisation of the practice, the ‘problem of ethical pre-emption’. However, little is known about how exactly definitions differ, how they cause confusion and how this can be overcome.
Assisted dying practices, which include euthanasia and physician-assisted suicide (PAS), have expanded significantly around the world over the past 20 years. Euthanasia refers to the act of intentionally ending the life of a patient by a health care practitioner through medical means at that patient's explicit request while PAS involves the provision or prescribing of drugs by a health care practitioner for a patient to end their own life. The growing global aging population accompanied by higher levels of chronic disease and protracted illnesses have sharpened the focus on end of life issues and societal and legislative debates continue to address related moral and ethical complexities. Assisted dying practices are now legal in 18 jurisdictions, increasing the number of people with access to euthanasia and/or physician-assisted suicide (PAS) to over 200 million. New legislation is being crafted or considered in Portugal, Spain and 16 US states. Germany has recently overturned a ban on assisted dying services and New Zealand will put legalization of euthanasia to a vote in 2020. Assisted dying practice characteristics differ and there is also considerable variation in the terminology and labels used for assisted dying, which can add to the confusion and controversy around the practices. Frequency of use also varies greatly by jurisdiction, though a consistent increase has been seen in European countries including Belgium, the Netherlands and Switzerland as well as some jurisdictions with long-standing physician assisted dying laws, such as Oregon and Washington. All assisted dying legislation includes substantive and procedural requirements, such as minimum age, waiting period, health condition, physician consultation and reporting procedure, however, some are extensive and detailed while others are more limited. As access to assisted dying expands in new and existing jurisdictions, research must also expand to diligently examine the impact on patients, specifically among vulnerable populations, as well as on health care practitioners, health care systems and communities. This article will provide a thorough investigation, or 'status quaestionis' of the terminology, evolution and current legislative picture of assisted dying practices around the globe and contribute to the ongoing ethical, regulatory and practice debate, which have become increasingly important considerations for medical practice, end-of-life care and public health.
OBJECTIVE: This review will explore definitions of early palliative care and describe how it has been implemented for those diagnosed with a life-limiting chronic illness.
INTRODUCTION: People with life-limiting chronic illnesses who receive palliative care interventions have increased quality of life, better symptom management, and are more likely to have advance care plans than patients who do not. It is therefore best practice to encourage early identification of those in need of palliative care services. However, there is uncertainty over what is considered to be "early palliative care" and this presents a barrier to evaluating outcomes associated with it.
INCLUSION CRITERIA: All literature that defines an early palliative care approach in adults (aged 18+) with a life-limiting chronic illness will be included in this review.
METHODS: This scoping review will be completed using the JBI scoping review methodology. A comprehensive search of academic and gray literature using MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), Web of Science Core Collection, Ovid Cochrane Library, and ProQuest (Health and Medicine and Sociology Collections) will be utilized. Once screened by two reviewers, results will be extracted using a customized tool and summarized into a final report using a narrative synthesis presented in table form.
BACKGROUND: Euthanasia can be thought of as being either active or passive; but the precise definition of "passive euthanasia" is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia.
MAIN TEXT: At the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. The idea that withholding life-sustaining treatment is passive euthanasia is traced to James Rachels's arguments, which lend themselves to the claim that passive euthanasia does not require intention to end life. Yet the argument here is that Rachels's arguments are flawed, and we have good reasons to think that intention is important in understanding the moral nature of actions. As such, we should reject any understanding of passive euthanasia that does not pay attention to intent.
SHORT CONCLUSION: James Rachels's work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist.
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s.
PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach.
METHODS: Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken.
FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management.
IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
BACKGROUND: The International Association for Hospice and Palliative Care (IAHPC) developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief.
AIM: The objective of this paper is to present the research behind the new definition.
METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In phase one, 38 PC experts evaluated the components of the World Health Organization (WHO) definition and suggested new/revised ones. In phase two, 412 IAHPC members in 88 countries expressed their level of agreement with the suggested components. In phase three, using results from phase two, the expert panel developed the definition.
RESULTS: The consensus-based definition is "Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers." The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to palliative care.
CONCLUSIONS: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering, and those who believe that PC describes the care of those with a very limited remaining life span.
OBJECTIVE: To validate conceptual and operational definitions of Symptom control (1608) indicators for patients with cardiac diseases in palliative care.
METHOD: Definitions were established through a literature review and were validated by consensus among expert nurses. Two rounds of the Delphi method and a meeting with experts were carried out in order to validate the definitions for the indicators and for the magnitude of response for each indicator.
RESULTS: Conceptual and operational definitions for Symptom control (1608) indicators and for the magnitude of response for each indicator were validated.
CONCLUSIONS: All conceptual and operational definitions of 11 indicators of the nursing outcome Symptom control (1608) were validated by experts. Content and clinical validation studies remain necessary to verify the capacity of the indicators to measure the effectiveness of nursing interventions in clinical practice and research.
OPINION STATEMENT: Palliative care has evolved over the decades from its roots in the hospice movement to a much wider approach in which early intervention further "upstream" in the illness is encouraged to improve quality of life for patients and their families. This new definition has a strong evidence base in cancer trials and is supported by major national and international organizations. However, it has proven difficult to convince patients, the public, and even healthcare providers, of this upstream migration of palliative care, with many continuing to associate palliative care exclusively with end-of-life care. A multitude of definitions now exists, with varying emphasis on early intervention versus end-of-life care. In addition, a new nomenclature has emerged to conceal the end-of-life component of palliative care despite its continued importance, adding further to the confusion. Uncertainty within the specialty about the definition of palliative care will not reassure referring physicians and policymakers about its meaning nor convince them of its importance. Accuracy and clarity in the form of an established definition of palliative care are required to reduce misconceptions, facilitate clinical and academic development, and promote effective communication. This definition should acknowledge both expertise in end-of-life care and its relevance for improving outcomes early in the course of advanced cancer, and should be disseminated widely and practiced consistently.
Ce chapitre est l'une des contributions de conférenciers intervenus lors d'une journée d'études de l'Ecole de Propédeutique à la Connaissance de l'Inconscient intitulée "Deuil et séparation". L'auteure est intervenue sur le deuil blanc d'une personne atteinte de la maladie d'Alzheimer. Elle définit ce qu'est le deuil blanc, ses répercurssions psychiques tant chez le malade que chez ses proches aidants.
According to international scientific medical consensus, death is a biological, unidirectional, ontological state of an organism, the event that separates the process of dying from the process of disintegration. Death is not merely a social contrivance or a normative concept; it is a scientific reality. Using this paradigm, the international consensus is that, regardless of context, death is operationally defined as “the permanent loss of the capacity for consciousness and all brainstem function. This may result from permanent cessation of circulation or catastrophic brain injury. In the context of death determination, ‘permanent’ refers to loss of function that cannot resume spontaneously and will not be restored through intervention.” The word “permanent” replaces “irreversible” (used in the United States’ 1980 Uniform Declaration of Death Act) in this new definition, arguably invented to allow donation after circulatory determination of death (DCDD) while still complying with the dead donor rule. I will show that this invention fails, for at least four reasons.
When The Ad Hoc Committee of Harvard Medical School to Examine the Definition of Brain Death began meeting in 1967, I was a graduate student, with committee member Ralph Potter and committee chair Henry Beecher as my mentors. The question of when to stop life support on a severely compromised patient was not clearly differentiated from the question of when someone was dead. A serious clinical problem arose when physicians realized that a patient's condition was hopeless but life support perpetuated body function. Thus, the committee stated that its first purpose was to deal with the burdens on patients and families as well as on hospitals and on patients needing hospital beds occupied by comatose patients. They intuited the strategy of "defining" these patients as dead, thus legitimating treatment stoppage. They noted that this would also serve a second purpose. Although the dead donor rule had not yet been clearly articulated, they claimed that defining patients as dead would also address controversy over obtaining organs for transplant. My mentors' discussions related to my interest in the intersection between questions primarily of medical fact (When has a human brain irreversibly ceased functioning?) and nonmedical questions of social policy (Should we treat individuals with dead brains and beating hearts as dead humans?). It quickly became clear that most committee members did not appreciate the interplay of these questions.
At its inception, "brain death" was proposed not as a coherent concept but as a useful one. The 1968 Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death gave no reason that "irreversible coma" should be death itself, but simply asserted that the time had come for it to be declared so. Subsequent writings by chairman Henry Beecher made clear that, to him at least, death was essentially a social construct, and society could define it however it pleased. The first widely endorsed attempt at a philosophical justification appeared thirteen years later, with a report from the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and a seminal paper by James Bernat, Charles Culver, and Bernard Gert, which introduced the insightful tripartite scheme of concept, criterion, and tests for death. Their paper proposed that the correct concept of death is the "permanent cessation of functioning of the organism as a whole," which tenuously remains the mainstream concept to this day. In this essay, I focus on this mainstream concept, arguing that equating brain death with death involves several levels of incoherence: between concept and criterion, between criterion and tests, between tests and concept, and between all of these and actual brain death praxis.
Five decades ago, Henry Knowles Beecher, a renowned professor of research anesthesiology, sought to solve a problem created by modern medicine. The solution proposed by Beecher and his colleagues on the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death proved very influential.1 Indeed, other contemporaneous medical developments magnified its significance yet also made the solution it offered somewhat problematic. As we mark this fiftieth anniversary, at a time when concerns about the conceptual model on which its recommendations rested are being voiced by critics from medicine as well as philosophy, it is worthwhile to view the committee's report in relation to the problem that prompted its existence as well as the one to which it was quickly applied.
This special report is published in commemoration of the fiftieth anniversary of the "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death," a landmark document that proposed a new way to define death, with implications that advanced the field of organ transplantation. This remarkable success notwithstanding, the concept has raised lasting questions about what it means to be dead. Is death defined in terms of the biological failure of the organism to maintain integrated functioning? Can death be declared on the basis of severe neurological injury even when biological functions remain intact? Is death essentially a social construct that can be defined in different ways, based on human judgment? These issues, and more, are discussed and debated in this report by leading experts in the field, many of whom have been engaged with this topic for decades.
Kennedy terminal ulcers, a subset of pressure injuries, are associated with the dying process. This scoping review aimed to identify and map the published literature on Kennedy terminal ulcers in terms of its definition, prevalence, assessment, treatment, management, health care costs, and quality of life for patients in all health care settings. Using the Arksey and O’Malley scoping review framework, we systematically searched the Cochrane Library, CINAHL, EMBASE, MEDLINE, and ProQuest databases and 5 guideline repositories between 1983 and 2018. The following search terms were used: Kennedy ulcers, Kennedy terminal ulcers, terminal ulcer, skin failure, and Skin Changes at Life’s End. Data were extracted using a purposely developed data collection tool. Initial searches yielded 2997 sources, with 32 included in this review. Most Kennedy terminal ulcer literature was published by nurses in the United States. Kennedy terminal ulcer prevalence data are limited, with no validated assessment tools available. Kennedy terminal ulcers may be misclassified as pressure injuries, potentially resulting in financial penalties to the institution. This scoping review revealed significant knowledge and clinical practice gaps in patient assessment, management, and treatment of Kennedy terminal ulcers. Timely patient education may help them to make informed care and quality end-of-life decisions. Further research is needed to inform clinical practice to improve patient care.
Palliative Care and its medical subspecialty, known as Palliative Medicine, is the care of anyone with a serious illness. This emerging field includes Hospice and comfort care, however, it is not limited to end-of-life care. Examples of the types of serious illness that Palliative Medicine clinicians care for include and are not limited to hematologic and oncologic diseases, such as cancer, advanced heart and lung diseases (e.g., congestive heart failure and chronic obstructive pulmonary disorder), advanced liver and kidney diseases, and advanced neurologic illnesses (e.g., Alzheimer's and Parkinson's disease). In the past decade, there has been tremendous growth of Palliative Medicine programs across the country. As the population of patients with serious illnesses increases, there is growing concentration on quality of care, including symptom management, meeting patients' goals regarding their medical care and providing various types of support, all of which are provided by Palliative Medicine. In this review article we define Palliative Medicine, describe care pathways and their applicability to Palliative Medicine, identify different models for Palliative Care and provide evidence for its impact on cost and quality of care.
Cet article est une mise au point sur la mort inattendue du nourrisson, qui malgré une forte baisse, reste la 1ère cause de décès au-delà de la période néonatale, justifiant de renforcer les mesures de prévention et d'en comprendre la cause. (Adapté du R.A.).
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