Background: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness.
Methods: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life.
Results: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups.
Conclusions: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions.
Trial registration: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200.
Contexte : La recherche sur laquelle s’appuie cet article a été réalisée au cours d’un contrat doctoral en psychologie clinique. La question déployée autour des intentions et processus psychiques dans les prises de décisions à la place d’autrui dans les situations de fin de vie, a permis la mise en place d’une recherche de terrain par le biais d’observations et d’entretiens auprès de professionnels de soins palliatifs. Parmi les trois « triangulations cliniques » examinées dans la thèse, nous choisissons de nous arrêter sur une configuration particulière qui nous permet de mettre en exergue les affects négatifs qui prennent parfois place dans la relation de soin et la manière dont ceux-ci habitent les décisions que nous prenons à la place de nos patients.
Objectifs : Dans cette présentation, nous tentons de mettre en lumière certains mouvements inconscients qui nous semblent inhérents à la relation d’aide à la personne vulnérable, mais exacerbés lors de la rencontre avec des patients "déviants" (non compliants, dans le refus, etc.). Nous verrons comment cette négativité, prise dans des alliances inconscientes (R. Kaës, 2009), peut générer des situations qui relèvent parfois d’une véritable violence du soin (Ciccone et al., 2014) qu’il semble essentiel de mieux identifier afin de garantir une véritable éthique des processus décisionnels qui imprègnent les pratiques soignantes.
Méthode : Le recueil de données s’appuie sur des entretiens de recherche et des temps d’observation réalisés au sein de deux unités de soins palliatifs (USP) situées en France, organisés en deux sessions de 13 journées et/ou nuitées. Les entretiens ont été réalisés sous la forme d’une discussion guidée avec plusieurs professionnels (médecins, infirmières, aides-soignantes ou psychologues) volontaires. Les "triangulations cliniques" sont l’aboutissement d’un travail de recomposition au sujet d’un patient accueilli dans l’USP (1er point) à partir des notes d’observations de la chercheuse (2e point) et du discours des professionnels (3e point). Dans cet article, c’est le récit de M. Aïe qui est présenté parmi les trois triangulations cliniques soutenant le travail de thèse, dans ce qu’il offre la possibilité d’une mise en perspective de plusieurs niveaux de complexité autour de la négativité et des décisions prises à la place d’autrui.
Résultats : Cette présentation offre une occasion de penser le soin ainsi que la décision prise à la place d’autrui dans des dynamiques nouvelles. Les résultats cliniques obtenus à partir de la méthode de recherche originale mise en place dans la thèse montrent toute la fécondité d’un travail qui repose sur l’analyse des situations complexes à partir d’une triangulation clinique, cette triangulation permettant d’étudier les enjeux subjectifs susceptibles de s’exprimer à différents niveaux. C’est par ailleurs la perspective groupale qui est ici mise en relief, notamment au travers les alliances inconscientes basées sur le négatif de certaines situations de soin. Le récit de M. Aïe nous permet d’illustrer comment la haine se diffuse inconsciemment au sein des décisions prises pour la personne vulnérable. Ces conséquences nous appellent à déployer des stratégies pour tenter de symboliser ces affects déliants.
Conclusion : Décider à la place de l’autre vulnérable n’est une mince affaire pour personne et convoque chaque "décideur" dans ce qu’il a éprouvé à être le sujet vulnérable d’une décision prise par autrui : la figure du nourrisson en étant l’originaire (Ciccone, Bonnefoy, Bonneville, Calamote, & Deronzier, 2012). Face aux situations extrêmes de la vie où se jouent la précarité ontologique du sujet, depuis le début jusqu’à la toute fin de la vie, peut-être faut-il se saisir de positions subversives (Pacific, 2011) pour travailler l’idée qu’envisager la maltraitance comme potentiel du soin peut être un préalable à la bientraitance.
Avec le confinement, les individus ont été tenus à distance physique les uns des autres et ont donc connu un isolement sans précédent, que cet isolement soit strictement individuel ou bien collectif. Chacun a donc été appelé à mobiliser ses propres capacités, ses propres ressources pour "tenir" dans un contexte d'isolement relatif et sans pouvoir se déplacer. Les professionnels en charge des personnes vulnérables ont largement utilisé les "technologies de la distance", comme le téléphone, pour maintenir les relations d'aide et de soin.
Chaque personne et chaque collectif cherche le meilleur chemin éthique pour soulager au mieux la personne qui affronte des moments de solitude, mais il y a un enjeu de société à associer l'accueil de nos vulnérabilités. Si l'hospitalité et la sollicitude étaient concrétisées dans la marche courante de la société tout entière, en faisant du lien social un vrai projet de société, nous serions moins démunis face aux vulnérabilités et mieux préparés à affronter et à vivre la mort.
Faire reconnaître le rôle central des aidants profanes et rappeler le caractère indispensable de leur contribution fait aujourd’hui partie des principaux besoins que les aidants revendiquent explicitement, tant vis-à-vis des professionnels avec qui ils collaborent, que vis-à-vis des pouvoirs publics. Dans un contexte de plus forte sensibilisation à leur égard, c’est aussi l’ambition de ce numéro de Gérontologie et société, qui se propose à la fois de définir et de renseigner ce que recouvre la notion de proches aidants auprès de personnes âgées mais également de comprendre la nature de leurs engagements et de leurs expériences. Comment ces aidants pensent-ils leur rôle et envisagent-ils leur situation ? Quels sont les ressorts et les logiques sociales qui déterminent leurs investissements et leurs manières d’aider ? Dans quelle mesure sont-ils épaulés et comment s’accommodent-ils des services qui leurs sont proposés ? Sur la base d’une sélection de 9 articles, retenus pour leur diversité d’approche disciplinaire et territoriale, les contributions présentes dans ce numéro offrent un témoignage concret du profil hétérogène de ces aidants, de l’extrême diversité des tâches qu’ils accomplissent mais aussi des difficultés qu’ils sont susceptibles de rencontrer au quotidien. Plus fondamentalement encore, ils interrogent la situation d’aide, l’intimité des relations entre aidants et aidés et démontrent l’impérieuse nécessité à poursuivre les efforts pour soutenir ces proches aidants dans leur travail quotidien d’accompagnement.
[Résumé éditeur]
OBJECTIVE: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.
DESIGN/METHODS: Mixed methods convergent analysis.
SETTING: Canadian paediatric tertiary care university hospital.
PARTICIPANTS: All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
RESULTS: Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
CONCLUSIONS: With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty.
Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role.
Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child.
Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent.
Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support.
Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%).
Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.
Twenty percent of Americans die in an intensive care unit (ICU), often incapacitated or requiring assisted decision making. Surrogates are often required to make urgent, complex, high-stakes decisions. Communication among patients, families, and clinicians is often delayed and inefficient with frequent missed opportunities to support the emotional and psychological needs of surrogates, particularly at the end of life. The Critical Care Nurse Communicator program is a nurse-led, primary palliative care intervention designed to improve the quality and consistency of communication in the ICU and address the informational, psychological, and emotional needs of surrogate decision-makers through the shared decision-making process.
Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life.
Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks.
Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018.
Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention.
Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving.
Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient’s spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0).
Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes.
La souffrance est une entité universelle, multidimensionnelle, mais aussi unique et personnelle, paradoxalement sous-diagnostiquée, alors qu’elle est omniprésente dans notre pratique en milieu hospitalier. Le but de cet article est de proposer au lecteur quelques pistes pour l’exploration et l’identification de la souffrance des proches de patients en situation palliative, et surtout quelques outils d’accompagnement et de soutien.
OBJECTIVE: To evaluate 'Gold Line', a 24/7, nurse-led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven.
METHOD: Data on the time and nature of all calls between 1 April 2014 and 30 March 2015 were obtained from the patient Electronic Records. Interviews with 13 participants captured patients and carers perspectives.
RESULTS: To date, 3291 patients have been referred to the Gold Line. During the study period, 42% of registered patients had a non-cancer diagnosis and 45.2% of service users were not known to Specialist Palliative Care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were made involving 1813 individuals. 39% of the 5106 contacts were resolved by the Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance from the Gold Line and the importance of practical advice was emphasised. Current data (year to October 2015) show that 98.5% of calls (4500/4568) resulted in patients remaining in their place of residence.
CONCLUSIONS: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and for their carers. The line enabled them to feel supported and remain in their place of residence, hence reducing the pressure for avoidable hospital admissions and use of other services. Providing this service may encourage healthcare professionals to identify more patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.
Objective: Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role.
Design: Cross-sectional questionnaire study.
Setting:The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews.
Participants: Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation.
ain outcome measure: Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach’s a was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity.
Results: Exploratory and confirmatory factor analyses identified 26 items on five factors: ‘helping spouses plan their futures’ ‘helping caregivers alleviate any regrets regarding their care’, ‘understanding the bond between a couple’, ‘providing support for anticipatory grief’, and ‘addressing spousal caregivers’ emotions after their spouses’ deaths’. The final model showed acceptable goodness-of-fit indices. The Cronbach’s a for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively.
Conclusions: This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.
PURPOSE OF REVIEW: Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress.
RECENT FINDINGS: Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.
SUMMARY: Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.
Pour certaines personnes à l'approche de la mort, la désorientation leur permettrait de revisiter leur histoire "sans filtre" en toute authenticité, comme un exercice de "réparation" consistant en quelque sorte à s'affranchir de certains de leurs actes au regard du contexte et des usages de l'époque pour se réconcilier avec leur passé et mourir en paix.
[Résumé éditeur]
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...
[Résumé auteures]
L'auteure se demande si la capacité à être vulnérable constitue une vertu. Et de là considérer que l'autonomie est un rêve et qu'il vaut mieux parler des capacités (ou "capabilités") de chacun. La reconnaissance de ces capacités permettrait un meilleur équilibre de la relation de soins.
Le corps vulnérable reste une condition essentielle d'une relation authentique avec un être humain. L'auteur aborde cette problématique à partir de la maladie mortelle en se référant à "La mort d'Ivan Ilitch". Le corps concentre l'enjeu de la relation de soin. Chacun, le malade et le soignant, fait don de soi à travers la relation.
Depuis 2007, à l’hôpital de Bellerive, le groupe S’EXPRIMER AUTREMENT est ouvert à tous les patients en soins palliatifs et en soins de réadaptation ainsi qu’à leurs proches. À visée thérapeutique, il offre un temps de création et un temps d’échange. L’accompagnement des soignants est subtil et il est mis en lumière avec deux situations cliniques. Des éclairages théoriques issus de l’approche humaniste en relation d’aide, de l’art-thérapie et de la psychanalyse sur la question de la métaphore permettront de mieux l’appréhender.
The goal of this Fast fact is to explain the role of a surrogate decision maker, how to guide patients in the selection of a surrogate, and how decision making proceeds if the patient has never selected a surrogate before becoming incapacitated.
[Extrait article]