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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BACKGROUND: Episodic dyspnea is an increasingly recognized phenomenon that occurs frequently in patients with cancer. Although numerous definitions have been proposed to describe episodic dyspnea, to date, no common widely accepted definition in Spanish has yet emerged. Without a clear well-accepted definition, it is difficult to design rigorous clinical trials to evaluate candidate treatments for this emerging entity and to compare outcomes among studies.
OBJECTIVE: The aim of the study was to reach a consensus definition of episodic dyspnea in the Spanish language based on professional criteria in cancer patients.
DESIGN: A two-round Delphi study.
SETTING/SUBJECTS: Sixty-one Spanish specialists in medical oncology, radiation oncology, pneumology, palliative care, and pain management participated in the study.
MEASUREMENTS: Sixteen different questions on dyspnea-related terminology, including the definition of episodic dyspnea, were assessed.
RESULTS: The panel of experts reached a consensus on 75% of the 16 assessments proposed: 56.25% in agreement and 18.75% in disagreement. The term that most panelists considered most appropriate to define dyspnea exacerbation was dyspnea crisis. The panelists disagreed that dyspnea exacerbation is equivalent to dyspnea at effort and that the presence of dyspnea at rest is required for exacerbation to occur. However, there was wide agreement that exacerbation may or may not be predictable and can be triggered by comorbidities as well as emotional, environmental, or effort factors.
CONCLUSIONS: The broad consensus reached in this study is a necessary first step to design high-quality methodological studies to better understand episodic dyspnea and improve treatment.
Psychiatry today is mainly practised within a curative framework. However, many mental disorders are persistent and negatively affect quality of life as well as life expectancy. This tension between treatment goals and the actual illness trajectory has evoked a growing academic interest in 'palliative psychiatry', namely the application of a palliative care approach in patients with severe persistent mental illness. Recently, Trachsel et al presented a working definition of palliative psychiatry. This first official attempt to capture the concept is based on WHO's widely accepted definition of palliative care but modified and limited to include only severe persistent psychiatric illness. While this is a welcome step in the discussion on palliative care approaches in psychiatry, it also opens up for new questions. One of the most evident is whether psychiatry actually needs its own definition of palliative care or, put differently, whether there is something about mental disorders that differs so radically from other medical conditions that it calls for a separate definition. We acknowledge the need to discuss the goals of psychiatric care in patients with severe persistent psychiatric illness. However, we question whether a separate definition of palliative care exclusive to psychiatry is the right way to go. In this paper, we discuss why.
Les infirmiers répondent aux exigences universitaires et sont amenés à justifier des pratiques professionnelles pertinentes. Les soignants (cadres, étudiants, aides, auxiliaires…) sont tous concernés par l’ensemble des définitions en relation d’aide pour argumenter l’impact du "Prendre soin”. Les pratiques infirmières ne cessent d’évoluer. Il convient également de prendre en compte sa dimension humaine pour analyser des savoirs en action, pour accompagner les personnes soignées vers une relation soignant-soigné, de nature interdisciplinaire.
Cette quatrième édition est enrichie par des concepts inhérents à la profession infirmière (Médiation en santé, infirmières de nuit, savoirs informels, Sédation en fin de vie...). L’approche de cet ouvrage demeure centrée sur la personne. Sa vocation humaniste repose, entre autres, sur les théories de Carl Rogers (Empathie, écoute active, non jugement…) et propose une vision relative aux sciences humaines (éducation, psychologie, sociologie…) . Des spécialistes ont contribué à définir plusieurs entrées (Anne Muller, Anne Perraut-Solivères, Michel Nadot, Christophe Debout, Régis Aubry, Robert Masson...). Ce recueil de concepts professionnels est utile dès le premier semestre de la formation initiale, de l’analyse de pratiques jusqu’au mémoire de fin d’études.
Outil aidant, ce dictionnaire sera tout aussi utile au personnel soignant qui pourra y puiser du sens, participer à des projets de recherche...
Human dignity (HD) in patient care is an important concept in clinical ethics that has various definitions in existing literature. This study aimed at analyzing the concept of HD in patient care. To this end, Rodgers' evolutionary concept analysis was used. For this purpose, scientific databases PubMed, Elsevier, ScienceDirect, Scopus, OVID, Web of Science, CINHAL, IRANDOC, Google Scholar, Magiran, SID and IranMedex were searched fusing the words "human dignity", "patient care" and "ethics". The main criterion for inclusion in the final analysis was the literature published in English and Persian from 2006 to 2016 in online scientific journals within the context of health care disciplines. Ultimately, 21 articles were selected for the study. The attributes of the concept under study were identified in two areas of individual HD and social HD. Antecedents included facilitators and threats, and the consequences consisted of both favorable and unfavorable consequences. HD forms the essence of patient care and is a value-based and humanistic concept based on respect for the integrity of human beings and their beliefs. This concept, with its holistic approach to humans, takes into account all stages of disease, old age and the end of life period. HD in patient care is influenced by cultural, social, spiritual and religious factors, and with its justice-based approach emphasizes equality of all patients and extends patient care to all areas of society rather than restricting it to hospital settings. In this study, a clear definition of HD is introduced.
The author focus on what went into the Danish stillbirth rate not only according to definitions but also seen in a broader context of cultural practices around birth and registration conventions.
Although grief is a natural response to loss among human beings, some people have a severe and prolonged course of grief. In the 1990s, unusual grief persisting with a high level of acute symptoms became known as "complicated grief (CG)". Many studies have shown that people who suffer from CG are at risk of long-term mental and physical health impairments and suicidal behaviours; it is considered a pathological state, which requires clinical intervention and treatment. DSM-5 (2013 Diagnostic and statistical manual of mental disorders, 5th edn) proposed "persistent complex bereavement disorder" as a psychiatric disorder; it is similar to CG in that it is a trauma- and stress-related disorder. In recent years, there has been considerable research on the treatment of CG. Randomized controlled trials have suggested the efficacy of cognitive behavioural therapy including an exposure component that is targeted for CG. However, experts disagree about the terminology and diagnostic criteria for CG. The ICD-11 (International classification of diseases, 11th revision) beta draft proposed prolonged grief disorder as a condition that differs from persistent complex bereavement disorder with respect to terminology and the duration of symptoms. This divergence has arisen from insufficient evidence for a set of core symptoms and the biological basis of CG. Future studies including biological studies are needed to reach consensus about the diagnostic criteria for CG.This article is part of the theme issue "Evolutionary thanatology: impacts of the dead on the living in humans and other animals".
BACKGROUND: The term "palliative approach" has emerged to connote healthcare activities provided consistent with the philosophy of palliative care, but not limited to specialized care providers or settings. A rigorous understanding of the palliative approach requires a conceptual model, which links the philosophy of palliative care to specific actions of practitioners, and is applicable to patients with any life-threatening illness, at any point on the disease trajectory, and provided by any care provider in any setting. This article proposes a conceptual model asserting that a palliative approach exists when care simultaneously addresses whole-person needs, enhances quality of life, and acknowledges mortality.
OBJECTIVE: To test the content validity of the proposed model against definitions of palliative care in existing literature.
DESIGN: Electronic and manual literature searches identified definitions of palliative care and palliative approach. Two authors independently conducted thematic analysis to assess congruence with the domains of the proposed conceptual model.
RESULTS: Nineteen definitions were identified. The three domains were represented in the majority: whole-person care (17/19), quality-of-life focus (17/19), and mortality acknowledgement (15/19). Published definitions also included other concepts, but only one of these (family within the unit of care) appeared in more than a few definitions.
CONCLUSIONS: The content validity of the proposed conceptual model is supported by the consistent presence of the three domains in published definitions. This conceptual model bridges philosophical definitions and clinician behavior and has potential to inform broad implementation of a palliative approach, at both clinic and system levels.
L'auteur présente tout d'abord de quelle manière la spiritualité est définie dans la littérature médicale. Ensuite il propose une manière d'appréhender la question de la définition de la spiritualité qui permette de développer des recherches dans le champ "Spiritualité et santé".
Several bioethicists have recently discussed the complexity of defining human death, and considered in particular how our definition of death affects our understanding of the ethics of vital organ procurement. In this brief paper, we challenge the mainstream medical definition of human death-namely, that death is equivalent to total brain failure-and argue with Nair-Collins and Miller that integrated biological functions can continue even after total brain failure has occurred. We discuss the implications of Nair-Collins and Miller's argument and suggest that it may be necessary to look for alternative biological markers that reliably indicate the death of a human being. We reject the suggestion that we should abandon the dead-donor criteria for organ donation. Rather than weaken the ethical standards for vital organ procurement, it may be necessary to make them more demanding. The aim of this paper is not to justify the dead donor rule. Rather, we aim to explore the perspective of those who agree with critiques of the whole brain and cardiopulmonary definitions of death but yet disagree with the proposal that we should abandon the dead-donor rule. We will consider what those who want to retain the dead-donor rule must argue in light of Nair-Collins and Miller's critique.