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.
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.
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.
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.
Sur l'un des murs de la chambre d'hôpital est accrochée une reproduction des Tournesols de Vincent Van Gogh... Une fenêtre pour s'échapper du difficile tête-à-tête avec la maladie et la mort. Manuel s'est battu avec courage pendant près d'un an contre un cancer qui le ronge. Après une rémission pleine d'espoir, il est de nouveau hospitalisé. Seule devant l'issue fatale de la maladie, Gabrielle, son épouse, fait alors appel à deux de leurs meilleurs amis qui accompagneront Manuel dans ses derniers jours de vie.
Ce récit humaniste détaille au jour le jour les sentiments et les questions qui se posent face à l'agonie d'un être cher : comment échanger et se comporter avec lui ? Il aborde également les difficultés de communication avec l'institution hospitalière et revendique le droit à mourir dans la dignité. Où commence et où finit l'obstination à maintenir un malade en vie ?
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.
PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.
RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).
CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
At-homeness, as an aspect of well-being, can be experienced despite living with life-limiting conditions and needs for a palliative approach to care. In nursing homes, older residents with life-limiting conditions face losses and changes which could influence their experience of at-homeness. The aim of this study was to explore how nursing staff enable at-homeness for residents with life-limiting conditions. Interpretive description was employed as the design using data from participant observations and formal and informal interviews related to nursing care situations. The strategies found to be used to enable at-homeness comprising nursing staff presenting themselves as reliable, respecting the resident's integrity, being responsive to the resident's needs, collaborating with the resident in decision-making, and through nurturing comforting relationships. The result on how to enable at-homeness could be used as strategies for a person-centered palliative approach in the care for residents in nursing homes.
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes.
Design: quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression).
Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program.
Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment.
Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.
Au cours du siècle dernier, les réactions et processus de deuil ont de plus en plus été perçus et conceptualisés comme « a-normaux », c’est-à-dire pathologiques lorsqu’ils sont inhabituels, trop longs ou trop courts, trop intenses ou pas assez présents. Le deuil est souffrance (dolere étymologiquement) et notre société veut le bonheur, le contrôle et l’efficacité. Le deuil doit donc être « traité ». Pourtant, le deuil existe car il est le coût de l’attachement essentiel entre les êtres humains, attachement qui a été phylogénétiquement et ontologiquement sélectionné pour notre survie et notre développement. La perspective humaniste, centrée sur la personne et expérientielle, permet d’envisager les réactions et processus de deuil de manière plus compréhensive, humaine, idiosyncratique. Dans cet article, au-delà d’un bref retour sur les développements théoriques et empiriques dans ce domaine, je présenterai les éléments scientifiques permettant d’appuyer une perspective d’accompagnement centrée sur la personne que tout un chacun peut vivre de manière privée et/ou professionnelle. Basée sur les preuves scientifiques, celle-ci apparaît comme plus respectueuse des diversités intra- et interindividuelles, considérant la personne de manière holistique et intervenant par la relation de qualité à l’autre. L’aidant authentique, respectueux, empathique, flexible et chaleureux est amené à entreprendre un travail humanisant l’autre et le soin qu’il lui apporte tout en répondant aux critères sociétaux d’efficacité attendue.
With mounting empirical evidence that interpersonal closeness and conflict with the deceased prior to death are significant predictors of grief reactions following loss, accurate empirical examination of these two constructs is of high importance. Despite the utility of the Quality of Relationships Inventory (QRI) in numerous domains of research, the original instrument was not constructed with a predeath, mourner–decedent relationship in mind. Therefore, this study clarified the factor structure of a modified QRI focusing on major dimensions of the predeath relationship with the deceased—dynamics that could have strong implications for the survivor’s bereavement trajectory. An exploratory factor analysis of 386 bereaved adults revealed two salient factors, deemed closeness and conflict. These results suggest that the modified bereavement version of the QRI, designated the Quality of Relationships Inventory–Bereavement version, is well positioned to advance research in thanatology, with possible limitations noted in the range of relationships to which it is applicable.
L'auteur considère que la vulnérabilité est indissociable de la vie humaine. Le corps constitue donc un lieu d'exposition risquée entre la personne et le monde. Il est une interface avec des rencontres de choses douces ou blessantes.
Qu'en est-il des personnes atteintes de la maladie d'Alzheimer, qui s'éloignent lentement du lien social ? L'auteur, sociologue, soutient que ces malades se désinvestissent du monde en réduisant leurs facultés mentales. Comment la famille et les soignants peuvent-ils les accompagner dans ce détachement du monde ? Le proche ou le soignant, qui prend le temps de regarder la personne atteinte de la maladie d'Alzheimer, la reconnaît alors dans son humanité et recrée ainsi du lien social.