Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution.
Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care.
Design: Scoping review
Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement.
Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home.
Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities.
Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life.
Design: A qualitative design with a phenomenological approach was adopted.
Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities.
Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment.
Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.
Les soins palliatifs ont le grand mérite d’avoir remis à l’honneur l’usage des conflits. La raison la plus évidente en est que les soins palliatifs confrontent chacun à la finitude de l’existence, au fait d’être mortel et à l’incertitude. Les soins palliatifs dans la médecine moderne, technico-scientifique, présentent une différence notable par rapport à l’accompagnement des mourants que nous connaissions à travers les écrits des philosophes, des historiens, des romanciers, des médecins, des religions. Cette différence réside dans l’idée que nous aurions acquis, maintenant, de décider de l’heure de la mort, de pouvoir en repousser l’heure ou de l’avancer. C’est en partie vrai et faux. La médecine technico-scientifique a, certes, doté l’homme d’un certain pouvoir mais aussi d’une grande illusion. Repousser l’heure de la mort renvoie au mythe de l’immortalité et de la croyance qu’un jour peut-être nous ne mourrons plus. Avancer l’heure de la mort renvoie à la question de notre toute-puissance, du suicide et du suicide assisté et avec cela la plus difficile des questions philosophiques (Camus, 1942).
Le fait est que, dans les années 1980, la prise de conscience des médecins de réanimation d’adultes et d’enfants, du fait que plus de la moitié des décès en réanimation était liée à une décision humaine, a obligé chaque soignant à affronter cette question de l’éthique de la décision et de sa responsabilité. Pendant plusieurs années, cette question avait fait l’objet d’une sorte d’omerta…
Recently, the Portuguese Parliament discussed four proposals aimed at allowing some forms of medically assisted death. However, all of them were rejected by the majority. Therefore, doctors who in some way accelerate a patient's death risk being convicted of the crime of homicide. Portuguese law provides some legal mechanisms that can exempt a doctor from criminal liability, such as causes excluding the conduct's wrongfulness, and causes excluding the doctor's culpability. Other elements to take into consideration are a proper interpretation of homicide crimes, thereby excluding conducts without the intent to kill; the relevance of patient consent; and the rejection of medical futility. This article explains how a doctor may not be held criminally accountable for medically assisted death, even in restrictive jurisdictions such as the Portuguese one.
il y a une gigantesque évolution de la relation patient-soignant depuis une trentaine d'années en France. L'auteur s'appuie sur son cham de compétences, à savoir la philosophie du droit pour en parler. Il développe son propos en trois points : évolution du droit français en lien avec l'évolution de la place du patient, articulation entre responsabilité juridique des soignants et droits des malades et pour terminer statut des directives anticipées pour comprendre la nature de la volonté du patient.
Cette article se propose d'explorer la contribution d'une approche participative en accompagnement pour soutenir les personnes malades confrontées à l'expérience de la perte de capacités. Dans un premier temps, l'approche participative, apporte à la présente démarche les fondements conceptuels nécessaires pour situer l'accompagnement dans une perspective à la fois théorique, éthique, mais aussi pratique. A cet égard, la pratique participative se décline en quatre compétences consacrées au développement du pouvoir d'agir de la personne accompagnée et au développement de la relation d'accompagnement. Une vignette clinique sert à illustrer les processus impliqués à chaque niveau de compétence.
OBJECTIVES: Family members of brain dead patients experience an unprecedented situation in which not only they are told that their loved one is dead but are also asked to consider organ donation. The objective of this qualitative study was to determine 1) what it means for family members to make the decision and to take responsibility, 2) how they interact with the deceased patient in the ICU, 3) how family members describe the impact of the process and of the decision on their bereavement process.
DESIGN: Qualitative study using interviews with bereaved family members who were approached for organ donation after the death of their relative in the ICU (brain death).
SETTING: Family members from 13 ICUs in France.
SUBJECTS: Bereaved family members who were approached for organ donation after the death of their relative in the ICU (brain death).
MEASUREMENTS AND RESULTS: Twenty-four interviews were conducted with 16 relatives of organ donor patients and with eight relatives of nonorgan donor patients. Three themes emerged: 1) taking responsibility-relatives explain how they endorse decisional responsibility but do not experience it as a burden, on the contrary; 2) ambiguous perceptions of death-two groups of relatives emerge: those for whom ambiguity hinders their acceptance of the patient's death; those for whom ambiguity is an opportunity to accept the death and say goodbye; and 3) donation as a comfort during bereavement.
CONCLUSIONS: In spite of caregivers' efforts to focus organ donation discussions and decision on the patient, family members feel a strong decisional responsibility that is not experienced as a burden but a proof of their strong connection to the patient. Brain death however creates ambivalent experiences that some family members endure whereas others use as an opportunity to perform separation rituals. Last, organ donation can be experienced as a form of comfort during bereavement provided family members remain convinced their decision was right.
In June 2016, Bill C-14 or Medical Assistance in Dying legislation became law in Canada. With this law came changes to nurses’ (ie, nurse practitioner, registered nurse, registered practical nurse) scopes of practice, roles, and responsibilities. While federal law, regulatory, and organizational policies are developed to inform nurses about the practice of medical assistance in dying, there is little evidence examining how nurses’ roles and responsibilities are enacted in practice. Therefore, a scoping review was conducted to synthesize the evidence on nurses’ roles and responsibilities in relation to medical assistance in dying and to identify gaps in the literature. A secondary aim was to identify organizational supports for nurses to effectively and ethically engage in medical assistance in dying. Using a recognized and rigorous scoping review methodology, the findings from 24 research studies were synthesized in this article. The analysis highlights the importance of effective health care professional engagement with the individual in the decision-making process and of the need to educate, support, and include nurses in providing medical assistance in dying. Overall, the current research on medical assistance in dying is limited in Canada, and more attention is needed on the role of the nurse.
Fatal work incidents result in an array of government responses, and in countries such as the United Kingdom and Australia, this may include the holding of coronial inquests. A common theme from the scant literature is that family members have a strong need to know how and why their loved one died. The inquisitorial nature of inquests suggests potential in uncovering this information, although little is known about families' experiences with these proceedings. Interviews with 40 bereaved relatives explored their views and experiences of inquests. Findings suggest that families, often frustrated with other investigative processes, want inquests to provide a better understanding of how and why the death occurred, uncover any failings/responsibilities, and thereby move closer to a sense of justice being obtained for the deceased. Families identified problems perceived to impair the process and where improvements could be made to secure a more effective and meaningful institutional response to the fatality.
Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative care team members to maximize the quality of care provided to these patients. A team of graduate students engaged in a collaborative learning activity to explore professional roles and responsibilities of palliative care team members when caring for adolescent and young adult oncology patients. Following a literature review and community expert interviews, students identified shared responsibilities of all team members and unique contributions of various professions. Engaging in this process highlighted and clarified the full scope of practice for each specialized team member. Educators should consider utilizing a similar collaborative learning activity to enhance students' understanding of the roles and responsibilities of each member of the interprofessional healthcare team.
Innovation is needed to improve care of the seriously ill, and there are important opportunities as we transition from a volume- to value-based payment system. Not all seriously ill are dying; some recover, while others are persistently functionally impaired. While we innovate in service delivery and payment models for the seriously ill, it is important that we concurrently develop accountability that ensures a focus on high-quality care rather than narrowly focusing on cost containment. The Gordon and Betty Moore Foundation convened a meeting of 45 experts to arrive at guiding principles for measurement, create a starter measurement set, specify a proposed definition of the denominator and its refinement, and identify research priorities for future implementation of the accountability system. A series of articles written by experts provided the basis for debate and guidance in formulating a path forward to develop an accountability system for community-based programs for the seriously ill, outlined in this article. As we innovate in existing population-based payment programs such as Medicare Advantage and develop new alternative payment models, it is important and urgent that we develop the foundation for accountability along with actionable measures so that the healthcare system ensures high-quality person- and family-centered care for persons who are seriously ill.
BACKGROUND: Care for patients with serious illness is an emerging practice area that has gained attention as value-based purchasing has increased. While the number of programs is growing, their impact on care quality and outcomes is unknown.
OBJECTIVE: With support from the Gordon and Betty Moore Foundation, the National Committee for Quality Assurance (NCQA) is assessing the feasibility of creating an accountability program focused on serious illness care.
METHODS: This article describes the process of developing an accountability program, findings from our initial work, and our plans to develop measures for a serious illness care accountability program. We focused on three questions: 1. What patient populations should be targeted for measurement? 2. What entities have accountability for ensuring high-quality care for serious illness? 3. What structures, processes, and outcomes should be evaluated in an accountability program for serious illness care?
RESULTS: Our environmental scan showed that the evidence base for specific patient populations or care models is not sufficiently mature to justify traditional structure and process measures. In visits to serious illness care programs, we observed different staffing models, care models, care settings, and payment structures. We found a gap between recommended inclusion criteria and services when compared to inclusion criteria and services offered by existing programs.
CONCLUSIONS: To address the challenges, NCQA intends to develop outcome measures driven by patient and family priorities. Structure and process measures will focus on building organizations' capacity to measure outcomes, including patient engagement and outcomes, linked to patient goals.
In choosing to do certain things, we appear to presuppose that we can act in the interests the dead, and that we have a duty to do so. For example, some of us go to great lengths to carry out their final wishes. Given that the dead no longer exist, however, it seems that nothing can be good or bad for them: they lack prudential interests. In that case, it is hard to see how we could owe them anything. They seem to lack moral standing altogether. In this essay, I will rebut this line of thought. I will claim that in some cases things that happen after people die are indeed good or bad for them. Their interests can still be advanced or hindered, so the dead have moral standing.This article is part of the theme issue 'Evolutionary thanatology: impacts of the dead on the living in humans and other animals'.
Cinq arrêts du Conseil d'Etat sont présentés et analysés dans ce panorama : - Arrêt du 26 octobre 2017 n° 393456 (Le fait que le praticien hospitalier ne soit pas resté aux côtés de l'interne tout au long de l'accouchement n'est pas constitutif d'une faute) - Arrêt du 15 novembre 2017 n° 403317 (L'action en garantie de l'établissement hospitalier, à l'encontre du producteur d'un produit défectueux avec lequel il n'est pas lié par un contrat administratif, relève de la compétence du juge judiciaire) - Arrêt du 22 décembre 2017 n° 390709 (la circonstance qu'un patient détienne des connaissances médicales ne dispense pas le médecin de son obligation d'information) - Arrêt du 5 janvier 2018 n° 416689 (Si l'avis des parents revêt une importance particulière, il appartient néanmoins au médecin en charge du patient mineur de prendre la décision d'arrêter les traitements qui apparaissent inutiles, disproportionnés ou sans autre effet que le seul maintien artificiel de la vie) - Arrêt du 8 février 2018 n° 404190 (L'information du patient sur les soins prodigués doit porter sur leurs conséquences, y compris esthétiques).
Origine : BDSP. Notice produite par EHESP An9R0x88. Diffusion soumise à autorisation
This study aimed to develop an end-of-life (EOL) care nursing attitude scale for Japanese geriatric nurses (ELNAS-JG). The items of the ELNAS-JG were developed to cover important topics related to EOL care (eg, motivation for providing EOL care, pain and symptom management, and decision-making support care for older adults). Participants were 1663 nurses employed in 32 institutions across Japan. Of these, 1298 participants were analyzed. An exploratory factor analysis of the 26 scale items revealed a 3-factor solution describing the concepts of responsibility, willingness, and confidence: responsibility and willingness were captured in factor 1 (16 items), and confidence was split into factor 2 (6 items) and factor 3 (4 items) to capture individual and collaborative behaviors. The overall Cronbach a coefficient for the 26 items was 0.95, and the intraclass correlation coefficient was 0.83. Overall, the ELNAS-JG was confirmed to have good internal consistency, test-retest reliability, content validity, known-groups validity, and construct validity. It can comprehensively measure nurses' attitudes toward EOL care for older adults in any EOL setting. Furthermore, this scale can be used to evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.
PURPOSE: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement.
METHODS: This qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines.
RESULTS: Four main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice.
CONCLUSION: Late-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations.
Cognitive representations of decision problems are dynamic. During and after a decision, evaluations and representations of facts change to support the decision made by a decision maker her- or himself (Svenson, 2003). We investigated post-decision distortion of facts (consolidation). Participants were given vignettes with facts about two terminally ill patients, only one of whom could be given lifesaving surgery. In Study 1, contrary to the prediction, the results showed that facts were distorted after a decision both by participants who were responsible for the decisions themselves and when doctors had made the decision. In Study 2 we investigated the influence of knowledge about expert decisions on a participant's own decision and post-decisional distortion of facts. Facts were significantly more distorted when the participant's decision agreed with an expert's decision than when the participant and expert decisions disagreed. The findings imply that knowledge about experts' decisions can distort memories of facts and therefore may obstruct rational analyses of earlier decisions. This is particularly important when a decision made by a person, who is assumed to be an expert, makes a decision that is biased or wrong.
De nos jours, le suicide assisté semble être une cause sur laquelle légiférer. La situation pousse vers une sorte d’urgence. Quels sont les mystères qui se masquent derrière cette question de société ? S’agit-il d’un désir singulier, d’une revendication d’intimité dans la mort, d’une quête d’amour, d’amitié, et/ou de responsabilité ? Des mots positifs tels qu’assistanat, bienveillance, lutte contre la souffrance à la fin de la vie, participent à donner de l’épaisseur à une idéologie de la « bonne mort ». La vulgate postmoderne bureaucratise et vulgarise les modalités du lien en faisant la promotion de leur absence dans les faits. Comment questionner la demande de suicide assisté et en assumer les conséquences logiques ?
Les entretiens présentés dans cet ouvrage ont été enregistrés et diffusés par France-Culture en février-mars 1981. Ils ont été légèrement remaniés et complétés pour l'édition. Emmanuel Lévinas se raconte, s'explique, passe au crible de l'analyse les principaux thèmes de sa philosophie.
[D'après l'introduction et le résumé éditeur]
Brain-computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed "complete locked-in syndrome," a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS.