La maladie d’Alzheimer confronte l’entourage à un proche qui disparaît progressivement de la personne qu’ils ont connue. Ce chemin vers un autre aimé que l’on ne reconnaît pas est difficile tant il est semé de pertes de ce qui a été et n’est plus. L’acceptation de ces pertes est douloureuse, mais ce n’est qu’à ce prix que les liens avec cette personne peuvent se poursuivre.
Si, dans un premier temps, il peut paraître évident que ce sont les patients qui nous mettent en difficulté à travers le chemin douloureux de la maladie, il s’avère que les quelques cas qui ont engendré chez moi un ressenti de solitude, et par extension de désarroi, étaient tous liés à des incompréhensions avec les autres professionnels de santé en soins palliatifs. Accepter l’exercice d’écrire m’a permis de réfléchir rétroactivement sur les mécanismes en jeu, dans le but de progresser bien sûr, mais aussi d’éviter de nouvelles situations inconfortables.
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Dans le contexte de confinement, notre mise en place de visioconférence de résidents auprès des familles et du psychologue traduit la sollicitude des équipes vis-à-vis des résidents. Cependant, le confinement a réactivé les angoisses archaïques emboîtées de l'ensemble du corps social, des soignants, des familles et des résidents en Ehpad, empêchant la prise en compte des adaptations nécessaires et différenciées selon le niveau de dépendance psychique.
The coronavirus disease 2019 (COVID-19) pandemic is challenging healthcare systems worldwide, none more so than critical and intensive care settings. Significant attention has been paid to the capacity of Australian intensive care unit (ICUs) to respond to a COVID-19 surge, particularly in relation to beds, ventilators, staffing, personal protective equipment, and unparalleled increase in deaths in ICUs associated with COVID-19 seen internationally. While death is not uncommon in critical care, the international experience demonstrates that restrictions to family presence at the end of life result in significant distress for families and clinicians. As a result, the Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control supported the development of a position statement to provide critical care nurses with specific guidance and recommendations for practice for this emerging priority area. Where possible, position statements are founded on high-quality evidence. However, the short time period since the first recognition of a cluster of pneumonia-like cases in China in January, 2020, meant that an integrative approach was required to expedite timely development of this position statement in preparation for a COVID-19 surge in Australia. This position statement is intended to provide practical guidance to critical care nurses in facilitating next-of-kin presence for patients dying from COVID-19 in the ICU.
Key ethical challenges for healthcare workers arising from the COVID-19 pandemic are identified: isolation and social distancing, duty of care and fair access to treatment. The paper argues for a relational approach to ethics which includes solidarity, relational autonomy, duty, equity, trust and reciprocity as core values. The needs of the poor and socially disadvantaged are highlighted. Relational autonomy and solidarity are explored in relation to isolation and social distancing. Reciprocity is discussed with reference to healthcare workers' duty of care and its limits. Priority setting and access to treatment raise ethical issues of utility and equity. Difficult ethical dilemmas around triage, do not resuscitate decisions, and withholding and withdrawing treatment are discussed in the light of recently published guidelines. The paper concludes with the hope for a wider discussion of relational ethics and a glimpse of a future after the pandemic has subsided.
OBJECTIVES: A vital component of the coronavirus response is care of the dying COVID-19 patient. We document the demographics, symptoms experienced, medications required, effectiveness observed, and challenges to high-quality holistic palliative care in 31 patients. This will aid colleagues in primary and secondary care settings anticipate common symptoms and formulate management plans.
METHODS: A retrospective survey was conducted of patients referred to the hospital palliative care service in a tertiary hospital, south east of England between March 21 and April 26, 2020. Patients included had a confirmed laboratory diagnosis of COVID-19 via reverse transcription polymerase chain reaction nasopharyngeal swab for SARS-Cov-2 or radiological evidence of COVID-19.
RESULTS: The thirty-one patients included were predominantly male (77%), elderly (median [interquartile range]: 84 [76-89]), and had multiple (4 [3-5]) comorbidities. Referral was made in the last 2 [1-3] days of life. Common symptoms were breathlessness (84%) and delirium (77%). Fifty-eight percent of patients received at least 1 "as required" dose of an opioid or midazolam in the 24 hours before death. Sixty percent of patients needed a continuous subcutaneous infusion and the median morphine dose was 10 mg S/C per 24 hours and midazolam 10 mg S/C per 24 hours. Nineteen percent of our cohort had a loved one or relative present when dying.
CONCLUSION: We provide additional data to the internationally reported pool examining death arising from infection with SARS-CoV-19. The majority of patients had symptoms controlled with low doses of morphine and midazolam, and death was rapid. The impact of low visitation during dying needs exploring.
CONTEXT: Advance care planning (ACP) is vital for end-of-life care management. Experiences as informal family caregivers might act as a catalyst to promote ACP.
OBJECTIVES: We investigated the association between ACP discussions and caregiving experiences.
METHODS: A nationwide survey in Japan was conducted in December 2016 using a quota sampling method to select a sample representative of the general Japanese population. The responses of 3167 individuals aged 20-84 years (mean age: 50.9 ± 16.8) were analyzed. The outcome was measured by asking if respondents had ever engaged in ACP discussions. The exposure was measured by asking whether and for how long respondents had experience as informal caregivers for family members. We analyzed informal caregiving experience related to the occurrence of ACP discussions using multivariable logistic regression models that adjusted for possible covariates.
RESULTS: Respondents with informal caregiving experience had significantly higher odds of having ACP discussions than those without caregiving experience (adjusted odds ratio: 1.93, 95% CI [1.63, 2.29]). Stronger effects were identified in younger adults (aged 20-65 years) and those with a higher education level (education duration > 12 years) than in older adults (aged = 65 years) and those with a lower education level, respectively.
CONCLUSION: Experiences as informal caregivers for family members may facilitate ACP discussions among Japanese adults, especially younger adults with higher educational attainment. Our findings may help healthcare providers screen those at risk for inadequate ACP discussions, and informal caregiving experience should be considered when healthcare providers initiate discussions of end-of-life care.
Research results suggest that illness can undermine patients' dignity and that dignity can be understood as an experience formed in communion with others. The aim of this study was, therefore, to illuminate the meanings of lived experiences of dignity as an intersubjective phenomenon from the perspective of dyads in palliative care. The authors analyzed transcripts from interviews with nine dyads using a phenomenological-hermeneutical method. Within the contexts of the dyadic relationship and the dyadic-health care professional relationship, the authors' interpretation revealed two meanings based on the participants' lived experiences: "Being available," related to responding and being responded to in terms of answerability and we-ness, and "Upholding continuity," linked to feeling attached through the maintenance of emotional bonds and being connected through upholding valued activities and qualities in daily living. The authors further reflected on the meanings in relation to philosophically grounded concepts such as presence, objectification, dependence, and dyadic body.
BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants’ perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them.
Hospital visitation restrictions have been widely implemented during the coronavirus disease 2019 pandemic as a means of decreasing the transmission of coronavirus. While decreasing transmission is an important goal, it is not the only goal that quality healthcare must aim to achieve. Severely restricted visitation policies undermine our ability to provide humane, family-centered care, particularly during critical illness and at the end of life. The enforcement of these policies consequently increases the risk of moral distress and injury for providers. Using our experience in a PICU, we survey the shortcomings of current visitation restrictions. We argue that hospital visitation restrictions can be implemented in ways that are nonmaleficent, but this requires unwavering acknowledgment of the value of social and familial support during illness and death. We advocate that visitation restriction policies be implemented by independent, medically knowledgeable decision-making bodies, with the informed participation of patients and their families.
In this personal reflection, as a Family Medicine resident at an Academic Center in Northeast Florida, as well as being a chronic illness patient myself, I explore the notion of dying alone and away from family. Although COVID-19 has changed the practice of medicine in many ways, prior to that, and before the instillation of hospital no-visitor policies and stay at home orders, I experienced a case of a patient dying alone in the hospital. These chronicles that case and the impact it had on me afterward in regard to my own family and how I hope the future of medicine can address this.
Family support is more, not less, important during crisis. However, during the COVID-19 pandemic, maintaining public safety necessitates restricting the physical presence of families for hospitalized patients. In response, health systems must rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. Strategies for maintaining family integrity must acknowledge clinicians’ limited time and attention to devote to learning new skills. Internet-based solutions can facilitate the routine, predictable, and structured communication which is central to family-centered care. But the reliance on technology may compromise patient privacy and exacerbate racial, socioeconomic, and geographic disparities for populations that lack access to reliable internet access, devices or technological literacy. We provide a toolbox of strategies for supporting family-centered inpatient care during physical distancing responsive to the current clinical climate. Innovations in the implementation of family involvement during hospitalizations may lead to long-term progress in the delivery of family-centered care.
The purpose of the current investigation was to examine associations between final conversations (FCs; i.e., relational communication with a terminally ill individual from the moment of terminal diagnosis to death) with the outcome of personal growth (PG). A total of 236 individuals who had previously engaged in FCs with a deceased loved one participated in an online survey. Analyses revealed significant, positive associations between the six FCs factors (i.e., messages of love, messages of spirituality/religion, messages of identity, everyday talk and routine interactions, difficult relationship talk, and instrumental death talk) with the PG factors. Implications are discussed along with limitations and future directions.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
Pouvez-vous expliquer pourquoi et comment vous organisez des apéritifs dans cette unité de soins palliatifs ? B.B. Ces apéritifs ont plusieurs modalités. Il se peut qu’en écoutant une personne malade ou sa famille, la question de l’alimentation, d’un plat ou d’un alcool, vienne sur le tapis, ou encore l’évocation d’un anniversaire, d’une fête ou d’un souvenir. Du coup, on peut émettre l’idée de boire ensemble, un apéritif par exemple. Le malade est extrêmement étonné de cette proposition, surtout venant d’un médecin. On appelle cela une petite fête ou un apéritif. Ça peut être du vin, du porto, rarement les alcools forts, tel que le whisky qui peut provoquer des irritations buccales. Ce peut être un blanc doux, un Sauternes. Du champagne ?B.B. Plus rarement le champagne. À ce moment-là, la personne hésite, ne sait pas trop, invoque le fait que son goût peut être modifié ou qu’elle ne peut plus avaler. Dans le cas où elle ne peut plus avaler, il est possible de mettre une goutte sur sa langue pour le goût. Ce petit projet est construit dans l’instantané, avec un proche s’il est présent, et avec deux ou trois membres de l’équipe qui sont disponibles et qui veulent bien venir. On s’interpelle entre nous et l’apéro est organisé vers midi et demi, en fin de visite. On demande aussi quelle musique le patient souhaite mettre. Ça peut se décider le matin pour le midi ou même sur le moment, car on ne sait pas si la personne sera vivante le lendemain. Il est aussi possible de partager un plat ou un alcool à n’importe quel moment, au goûter ou au soir…
INTRODUCTION: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.
OBJECTIVE: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.
DESIGN: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.
SETTING: A hospice in the North East of England, operating in the community, through volunteers.
PARTICIPANTS: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).
RESULTS: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.
CONCLUSIONS: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.
Les relations avec les autres sont complexes et potentiellement conflictuelles en fonction de la place ou du rôle qu'il va nous être donné de jouer dans telle ou telle circonstance. Du fait de schémas comportementaux et affectifs chargés en émotion, il est difficle pour la raison d'arriver à faire la part des choses. De plus, la raison, même lorsqu'elle analyse et tente de discerner objectivement se retrouve vite impuissante pour comprendre les situations paradoxales.
La confiance est un concept qui illustre parfaitement, toute l'emprise émotionnelle de l'être humain et tous les vains mais non nécesaires efforts de la raison à cerner la réalité d'une situation. Nous avons isolé quelques qualités "supérieures" qui permettent de sentir ce qu'est la confiance et ainsi de trouver la voie d'une relation pacifiée avec l'autre en dépit de l'hostilité du contexte. Il s'agit notamment de la réciprocité, de la spontanéité, d'une sincère humilité mais aussi de la considération de l'unicité de chaque personne.
OBJECTIVES: To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision.
DESIGN: A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results.
DATA SOURCES: Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus.
ELIGIBILITY CRITERIA: Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018.
PARTICIPANTS: Prisoners, prisoners' families, prison healthcare staff and other prison staff.
DATA EXTRACTION/SYNTHESIS: Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions.
QUALITY APPRAISAL: Two researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal.
RESULTS: 23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons.
CONCLUSIONS: The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified.
Living in a hospice department is an intense experience for patients, caregivers, and healthcare professionals. End-of-life care aims to conduct vulnerable dying patients towards a painless and peaceful death. The importance of a strong staff-patient relationship and the perspective of pain and suffering from patients has already been studied. This study aimed to explore patients' inner needs living in hospice through a qualitative research approach. A descriptive qualitative study was conducted in the hospice department at ARNAS Civico in Palermo, Italy. From a qualitative research point of view, a significant sample of ten dying patients was interviewed. Data were collected until saturation by in-depth interview using a semi-structured interview guide, and Colaizzi's method was used. Five themes emerged: experiencing hospice, hospice staff, family role, coping with the disease, and death. Human relationships seem to represent a fundamental key in patients' end-of-life, especially in their family fondness. Predictably, terminally ill patients seem to fear pain and incoming death. Even though patients had everything they needed in the hospice, their main thoughts were always focused on human relationships. End-of-life medicine should improve the quality of time that each patient could spend with significant others to improve end-of-life care.