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: Emotional preparedness for death (hereafter called death preparedness) and prognostic awareness (PA), a distinct but related concept, each contributes to patients' practical, psychological, and interpersonal preparation for death. However, the distinction between these two concepts has never been investigated.
OBJECTIVE: To evaluate the distinction between death preparedness and accurate PA by examining their agreement over cancer patients' last year and the similarity of their predictors.
METHODS: For this secondary analysis of a longitudinal study of death preparedness for 277 cancer patients, agreement between death preparedness and accurate PA was evaluated by percentages and kappa coefficients, and predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation.
RESULTS: Levels of agreement between reported death preparedness and accurate PA increased slightly (42.44%-52.85%) from 181-365 to 1-30 days before death, with kappa values from -0.190 (-0.319, -0.061) to -0.006 (-0.106, 0.093), indicating poor agreement. Participants who were male, older, reported financial sufficiency, had fewer distressing symptoms, and perceived higher levels of social support were more likely to report death preparedness. Participants who were female, had greater than high-school educational attainment, and endured higher levels of functional dependence were more likely to report accurate PA.
CONCLUSION: The distinction between death preparedness and accurate PA was supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Healthcare professionals should not only cultivate cancer patients' accurate PA, but also facilitate emotional preparation for death to achieve a good death and improve end-of-life-care quality.
What does it mean to be vulnerable? Vulnerable groups of people are those that are disproportionally exposed to risk, but who is included in these groups can change dynamically. A person not considered vulnerable at the outset of a pandemic can become vulnerable depending on the policy response. The risks of sudden loss of income or access to social support have consequences that are difficult to estimate and constitute a challenge in identifying all those who might become vulnerable. Certainly, amid the COVID-19 pandemic, vulnerable groups are not only elderly people, those with ill health and comorbidities, or homeless or underhoused people, but also people from a gradient of socioeconomic groups that might struggle to cope financially, mentally, or physically with the crisis.
We read with interest the Editorial about redefining vulnerability in the era of coronavirus disease 2019 (COVID-19). The Editors recognise underserved and marginalised populations enduring the COVID-19 pandemic, and that the category of vulnerable individuals or groups is not fixed but evolves in response to policies that might create or reinforce vulnerability. When we ask what being vulnerable means, are we also creating the spaces needed to question what it means to be made vulnerable?
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care settings.
Objective: The study aimed to explore how health care professionals working in palliative care settings view and/or understand the construct of compassion.
Methods: A qualitative approach using semistructured interviews was used. Interviews were conducted with eighteen health care professionals working in pediatric, adult, and aged palliative care settings. Interviews transcripts were thematically analyzed.
Results: Thematic analysis identified four main interrelated themes and supplementary subthemes. Health care professionals working in palliative care settings identified their perception of the (1) meaning of compassion, (2) importance of providing compassionate care, (3) barriers to providing compassionate care, and (4) facilitating compassionate care.
Conclusions: This study presents a novel understanding of the components of compassion from the perspective of health care professionals working in palliative care. While there is need for future research, important areas of improvement include increased resourcing, reducing time pressures, and education within palliative care settings. This will enable the fostering of compassionate care to patients, as well as enhanced well-being both professionally and personally for health care providers delivering such care.
Les étudiants infirmiers rédigent généralement des mémoires de fin d’études (MFE) à partir de situations vécues lors des stages. C’est une occasion pour nombre d’entre eux de développer des concepts dans le domaine des soins palliatifs. La notion de soins palliatifs ne recouvre pas seulement les unités spécialisées. Elle permet de considérer de multiple aspect de la prise en charge des patients (enfants, adolescents, adultes, personnes âgées, en situation de handicap…) ou tout simplement de l’accompagnement jusqu’à la mort, avec la réalité médicale et sociale que cela comporte (douleurs, émotions, relations avec les aidants…). La recherche documentaire est paramédicale et complexe. Elle suppose une interaction ancrée dans les problématiques informationnelles. Afin de contribuer au raisonnement des apprenants, les documentalistes participent à l’élaboration d’une logique méthodologique pour apporter des éléments constructifs des soins palliatifs dans les MFE. Des concepts incontournables peuvent être utilisés pour créer du sens entre la situation d’appel, la "question de départ", le cadre de références théoriques et l’enquête de terrain.
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.
The goal of this paper is to introduce the false hope harms (FHH) argument, as a new concept in healthcare. The FHH argument embodies a conglomerate of specific harms that have not convinced providers to stop endorsing false hope. In this paper, it is submitted that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine. Although hope serves important functions-it can be 'therapeutic' and important for patients' 'self-identity as active agents'- the presentation of false hope along the hope continuum entails a misconstrued balancing act. By not speaking up against unrealistic patient and family requests-including some requests for rights to try, resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments-healthcare providers precipitate harms, i.e., the FHH. These harms arise on both individual and communal levels and cannot be ignored. The goal of this paper is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. Instead, this paper seeks to make four points while outlining the FHH argument: consumer medicine and false hope are connected; providers and patients are very vulnerable in the system of consumer medicine; providers have a responsibility to stand up against false hope; and how the FHH argument could perhaps offer a footing to resist giving in to false hope.
AIM: To develop a simultaneous, evolutionary concept analysis of moral distress and moral uncertainty in the context of medical assistance in dying (MAiD).
BACKGROUND: Moral distress is well represented in nursing literature but disagreement persists in how the concept is defined and understood. Moral uncertainty has not been investigated in-depth. Further definition and conceptual clarity is required to understand these concepts within the context of MAiD.
DESIGN: Simultaneous concept analysis.
DATA SOURCES: Cumulative Index of Nursing and Allied Health Literature, Google Scholar, and PubMed databases were searched for articles in English. The final sample consisted of 44 documents published from 1984 to 2019.
METHOD: An adapted combination of Rodgers's Evolutionary Model and Haase et al's Simultaneous Concept Analysis method.
RESULTS: Despite the significant overlap, moral distress and moral uncertainty have subtle distinguishing differences. Attributes of moral distress in the context of MAiD focus on knowing the right course of action but being unable to act, especially when conflict or suffering occurs. Attributes of moral uncertainty center on an inability to decide on which course of action to take or knowing what outcome is preferable.
CONCLUSION: More research is required to bring further clarity to these concepts and develop interventions to support nurses who receive requests for or participate in MAiD.
Ce numéro comprend les articles suivants : brain death at fifty: exploring consensus, controversy, and contexts ; would a reasonable person now accept the 1968 Harvard brain death report? A short history of brain death ; a path not taken: beecher, brain death, and the aims of medicine ; Beecher dépassé: fifty years of determining death, legally ; a conceptual justification for brain death ; brain death: a conclusion in search of a justification ; conceptual issues in DCDD donor death determination ; DCDD ddonors are not dead ; uncontrolled DCD: when should we stop trying to save the patient and focus on saving the organs? ; a defense of the dead donor rule ; the dead donor rule as policy indoctrination ; the public's right to accurate and transparent information about brain death and organ transplantation ; brain death and the law: hard cases and legal challenges ; rethinking brain death as a legal fiction: is the terminology the problem? ; respecting choice in definitions of death ; imposing death: religious witness on brain death ; death: an evolving, normative concept ; lessons from the case of Jahi McMath ; the case of Jahi McMath: a neurologist's view ; revisiting death: implicit bias and the case of Jahi MMath.
Brain death, or the determination of death by neurological criteria, has been described as a legal fiction. Legal fictions are devices by which the law treats two analogous things (in this case, biological death and brain death) in the same way so that the law developed for one can also cover the other. Some scholars argue that brain death should be understood as a fiction for two reasons: the way brain death is determined does not actually satisfy legal criteria requiring the permanent cessation of all brain function, and brain death is not consistent with the biological conception of death as involving the irreversible cessation of the functioning of an organism as a whole. Critics counter that the idea that brain death is a legal fiction is deceptive and undemocratic. I will argue that diagnosing brain death as a hidden legal fiction is a helpful way to understand its historical development and current status. For the legal-fictions approach to be ethically justifiable, however, the fact that brain death is a legal fiction not aligned with the standard biological conception of death must be acknowledged and made transparent.
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.
Introduction: Experience in palliative medicine provides a beneficial learning opportunity for doctors-in-training. There is, however, a gap in understanding which aspects of learning are most useful, which are problematic and how learning can best be facilitated. This study addresses that gap using the 'threshold concepts' framework. Threshold concepts are critical points of learning, often unique to a discipline. The learning occurs within a transitional or 'liminal' space and has specific characteristics including being 'troublesome' and 'transformative.'
Methods: A qualitative, exploratory study was carried using the threshold concept framework. Semi-structured focus group interviews were held with doctors-in-training who had undertaken a 6-month palliative medicine attachment. Data were analysed using a content analysis approach with deductive and inductive phases, in order to identify threshold concepts.
Results: Five threshold concepts were identified. Two of these, 'emotional engagement' and 'communication management,' displayed all the typical characteristics of threshold concepts. This learning was highly valued by participants, had not occurred elsewhere in training and continued to influence practice.
Conclusions: Specific threshold concepts were identified for doctors undertaking a palliative medicine placement. These highlights where specific supports are required for learning and can be used to inform curriculum design.
Les émotions, un concept vaste, complexe, et surtout affectant tout être humain...
Nous avons décidé par ce mémoire de travailler sur les émotions des soignants dans le cadre des soins palliatifs car ce sujet nous semble délicat, subjectif mais omniprésent dans notre profession.
Nous avons tenté de définir ce concept, d'amener une réflexion sur ce sujet et sur les difficultés potentielles rencontrées par les soignants, ainsi que l'impact sur la relation de soin.
Nous avons défini également le concept de l'intelligence émotionnelle en réfléchissant sur le fait, que cette dernière pourrait être un atout de soin.
Puis, nous avons tenté de démontrer que l'dentification de ses propres émotions par les soignants permettait une présence authentique auprès de la personne en fin de vie, et que, la présence authentique du soignant permettait à la personne soignée d'exprimer son ressenti...
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
Frailty is an emerging global health burden, with major implications for clinical practice and public health. The prevalence of frailty is expected to rise alongside rapid growth in the ageing population. The course of frailty is characterised by a decline in functioning across multiple physiological systems, accompanied by an increased vulnerability to stressors. Having frailty places a person at increased risk of adverse outcomes, including falls, hospitalisation, and mortality. Studies have shown a clear pattern of increased health-care costs and use associated with frailty. All older adults are at risk of developing frailty, although risk levels are substantially higher among those with comorbidities, low socioeconomic position, poor diet, and sedentary lifestyles. Lifestyle and clinical risk factors are potentially modifiable by specific interventions and preventive actions. The concept of frailty is increasingly being used in primary, acute, and specialist care. However, despite efforts over the past three decades, agreement on a standard instrument to identify frailty has not yet been achieved. In this Series paper, we provide an overview of the global impact and burden of frailty, the usefulness of the frailty concept in clinical practice, potential targets for frailty prevention, and directions that need to be explored in the future.
The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological–hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.
Among the old and new controversies over brain death, none is more fundamental than whether brain death is equivalent to the biological phenomenon of human death. Here, I defend this equivalency by offering a brief conceptual justification for this view of brain death, a subject that Andrew Huang and I recently analyzed elsewhere in greater detail. My defense of the concept of brain death has evolved since Bernard Gert, Charles Culver, and I first addressed it in 1981, a development that paralleled advances in intensive care unit treatment. The century-old concept of the organism as a whole provides the fundamental justification for the equivalency of brain death and human death. In our technological age, in which increasing numbers of components and systems of an organism can be kept alive, and for longer intervals, the permanent cessation of functioning of the organism as a whole is the phenomenon that best corresponds to its death.
Introduction : au plan international, le concept de sédation palliative n’est pas défini de façon uniforme. En Suisse, il est encadré par les recommandations émises en 2005.
Contexte : la conceptualisation de la sédation palliative est susceptible d’être hétérogène chez les infirmiers , en raison de la diversité des protocoles développés localement, mais aussi, des expériences vécues, posant ainsi des difficultés épistémologiques et pratiques. Cette problématique, bien qu’indispensable pour bien circonscrire l’objet de futures recherches en la matière en Suisse, n’a pas été explorée dans la partie francophone de ce pays.
Objectifs : découvrir et décrire la conceptualisation de la sédation palliative par les infirmiers d’une unité de soins palliatifs en Suisse romande.
Méthode : recherche qualitative exploratoire avec entretiens compréhensifs individuels.
Résultats : la sédation palliative est considérée comme un traitement de dernier recours face à un/des symptôme(s) réfractaire(s). La recherche d’une dose minimale efficace et le caractère au moins initialement temporaire de la sédation sont les principaux éléments mis en avant par les infirmiers.
Discussion et conclusion : la conceptualisation de la sédation palliative est conforme aux recommandations suisses. Ces résultats constituent une base afin de développer une étude nationale en la matière.
Introduction: the concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient.
Case Description: souffrA 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores.
Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.