No description available.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs. / Applied Science, Faculty of / Nursing, School of / Graduate

La transplantation d'organe améliore durablement la qualité de vie de patients en défaillance organique terminale. Malheureusement le nombre de greffons disponibles est insuffisant pour traiter tous les patients inscrits en liste d'attente. En France, les organes greffés proviennent essentiellement de donneurs en mort encéphalique. En cas de maladie grave, incurable et rapidement mortelle, il est également possible dans certains pays (dont la France) d'arrêter les thérapeutiques qui maintiennent artificiellement un patient en vie et de prélever ses organes une fois le décès par arrêt circulatoire constaté. La loi n°2005-370 du 22 Avril 2005 (dite loi Léonetti) autorise l'arrêt des traitements lorsqu'ils apparaissent « inutiles, disproportionnés ou n'ayant d'autre effet que le seul maintien artificiel de la vie ». Pour certains, cette fin de vie médicalement planifiée devrait prendre en compte les souhaits du patient en matière de don d'organes et l'intérêt de la greffe pour la société. La position française était néanmoins jusqu'en 2014 de ne pas considérer le patient en fin de vie comme un donneur potentiel afin d'éviter toute confusion entre la décision d'arrêter les traitements curatifs et l'intention de prélever ses organes. Alors que ce type de prélèvement a débuté fin 2014 dans quelques sites pilotes français, nous avons examiné les aspects pratiques, juridiques et éthiques du prélèvement d'organe en situation de fin de vie médicalisée, en focalisant notre réflexion sur les droits du patient, la définition de la mort, la temporalité du processus de prélèvement, et les éléments qui déterminent les modalités d'arrêt des suppléances vitales. / Organ transplantation saves lives of many persons who otherwise would die from end-stage organ disease. In the past decades the need for transplants has grown faster than the number of available organs. This increasing requirement for donated organs has led to a renewed interest in donation after circulatory determination of death (DCDD). In some countries including France, terminally ill patients who die of cardiac arrest after a planned withdrawal of life support may be considered as organ donors (controlled DCDD). Before 2005 French rules were not designed for such practices. With regard to patients in final stage of incurable diseases, the law number 2005-370 of April 22, 2005 authorizes the withholding or withdrawal of treatments when they appear "useless, disproportionate or having no other effect than solely the artificial preservation of life". Advocates of the controlled DCDD argue that the end-of-life care plan should incorporate the patient's wishes concerning organ donation and the public interest of transplantation. Until 2014, most French medical academics regarded the perceived conflict of interest that would arise for clinicians treating potential donors as a major ethical question. As the French program started at the end of 2014 in a few pilot sites, we thus examine the practical, legal and ethical issues that arise in considering controlled DCDD, including determination of the donor's overall benefit, debates relating to the diagnosis and time of death, and factors determining how life-sustaining treatment is to be withdrawn.

Bakgrund: Teknologi och behandlingsmöjligheter inom intensivvården är under ständig utveckling. Den växande möjligheten till livsuppehållande behandling är inte alltid gynnsam för alla patienter. Det är en utmaning att identifiera tidpunkten då behandlingen blivit medicinsk meningslös och därmed ska avslutas. Beslutsfattandet försvåras eftersom patienterna ofta inte kan tala för sig själva. Processen att komma fram till ett beslut kräver ett samarbete mellan läkare och sjuksköterskor för att tillgodose patientens bästa och anhörigas behov. Att ge alla inblandade en röst har visat sig vara en utmaning och kan leda till konflikt. Syfte: Att belysa intensivvårdssjuksköterskans upplevelse av samarbetet med läkare inför beslutsfattande kring avslutande av livsuppehållande behandling. Metod: En systematisk litteraturöversikt med kvalitativ ansats och induktivt förhållningssätt. Resultat: Sjuksköterskor upplever att deras involverade i beslutsfattandet är viktigt och åtar sig ett antal handlingar för att bidra till samarbetet, samtidigt som de känner sig exkluderade och att deras arbete är undervärderat. Beslutsfattandet upplevs komplext där tid, anhöriga och olika professionella perspektiv påverkar samarbetet. Hur samarbetet är utformad och vilka beslut som tas i enskilda situationer upplevs variera relaterat till hur den individuella beslutsfattaren är som människa och vilka erfarenheter de involverade har. Slutsats: Samarbetet mellan sjuksköterska och läkare vid beslutsfattande om avslut av livsuppehållande behandling är viktigt för att utforma vården efter den individuella patienten. Beslutsfattandet är komplicerat, där etiska och moraliska principer behöver tillgodoses. Genom att få bättre förståelse och reflektera över den professionella rollen kan samarbetet underlättas. Att ta beslut om människors livsöden förblir tungt, men rätt förutsättningar gynnar såväl yrkesprofessionella som patienter.

Bakgrund: Sjuksköterskor möter patienter i livets slutskede i flertalet vårdmiljöer och därför är kunskaper i palliativ vård en av sjuksköterskors grundläggande kompetenser. Patienter kan uppleva förlust av sammanhang och efterfrågar stöd för såväl kroppsliga, själsliga, existentiella som sociala behov. Även närstående uttrycker behov av sjuksköterskors stöd. På sjukhus ger sjuksköterskor palliativ och kurativ vård parallellt på vårdavdelningar. Sjuksköterskor beskrivs av patienter som upptagna och närstående efterfrågar omsorgsfullt stöd från sjuksköterskor. Syfte: Att beskriva sjuksköterskors erfarenheter av palliativ vård i livets slutskede på vårdavdelning på sjukhus. Metod: En kvalitativ litteraturstudie med beskrivande syntes som utgår från tolv internationella artiklar ur vårdvetenskapliga tidskrifter. Resultat: I analysen identifierades två teman: Utmaningar vid vård i livets slutskede på sjukhus och sjuksköterskors stöd till patienter och närstående i livets slutskede, vilket beskrivs i totalt sju subteman. Slutsats: Examensarbetet bidrar med förståelse för att närvarande sjuksköterskor, genom att lära känna och respektera patienter och närståendes sammanhang och strategier för livets slutskede, kan vara ett stöd för en värdig död på vårdavdelningar på sjukhus. / Background: Nurses encounter end-of-life patients in different healthcare environments and knowledge in palliative care is a fundamental competence for nurses. Patients can experience a loss of coherence and request support from physical, emotional, existential and social needs. Support from nurses is also an expressed need for close ones. Nurses in hospital wards give parallel palliative and curative care. Nurses are described by patients as busy and close ones requests caring support from nurses. Aim: To describe nurses’ experiences from palliative end of life care in hospital wards. Methods: A qualitative literature review with descriptive synthesis based on twelve international articles from nursing journals. Results:Two themes were identified during the analysis: Challenges in end-of-life care in hospitals and nurses support of patients and close ones at the end of life, which was described in seven sub-themes. Conclusions: The degree project enhances the understanding that nurses who are present, can be a support for a dignified death in hospital wards, by coming to know and respecting coherence and strategies of patient and close ones at the end of life.

No description available.

Cette thèse s’intéresse aux pratiques sociales entourant le mourir des personnes du grand âge en institution gériatrique dans un contexte où le mourir dans la dignité est légiféré (Loi concernant les soins de fin de vie). Elle examine, plus précisément, la façon dont les pratiques entourant le mourir des personnes du grand âge façonnent les trajectoires de fin de vie. Cette thèse repose sur la théorie de la pratique qui explore la façon dont l’action humaine est construite et transformée par les individus dans un monde social donné. La pratique y est définie comme un ensemble de faires et de dires incorporés et partagés. Elle est un produit de l’histoire et de la culture et peut varier en fonction de l’individu qui la concrétise. Une étude ethnographique (observations directes, entretiens formels et informels auprès de soignantes et de proches endeuillés de personnes du grand âge) a été réalisée dans deux institutions publiques montréalaises : en centre d’hébergement et de soins de longue durée (CHSLD) et en unité de gériatrie hospitalière en 2017 et en 2018. Les résultats de cette thèse montrent un contexte institutionnel difficilement compatible avec les besoins des personnes du grand âge en fin de vie, marqué par la rareté des ressources — temporelles et humaines — et par les difficultés à intégrer l’accompagnement du mourir dans leur mission de soins. Malgré ce contexte tendu, trois pratiques entourant le mourir des personnes du grand âge ont été documentées. D’abord, la préservation d’un état limite par la mise en place de dispositifs visant la sécurité et la santé physique de ces personnes sans qu’une attention particulière soit portée à l’individu comme personne sociale. Si les soignantes tentent au mieux de prendre soin, les contextes organisationnels et structurels ne permettent pas toujours une telle prise en charge. Ensuite, la prise de décision ou la négociation du juste et de l’assez rend compte des enjeux éminemment moraux qui modulent « l’accès » aux soins pour l’ultime étape de la fin de la vie et des négociations qui se jouent entre les soignantes, les proches et les personnes du grand âge. Enfin, la mise en scène du mourir, où il est possible de véritablement saisir le soin tel que prodigué par les soignantes, malgré les manques à gagner et la non-incorporation effective des apports de la nouvelle Loi concernant les soins de fin de vie dans l’organisation de soins destinés aux personnes du grand âge. Parallèlement, les trajectoires de fin de vie sont illustrées. Elles ne sont pas linéaires et sont bien souvent synonymes de multiples transitions où plusieurs acteurs (proches, soignants et institutions) négocient différentes possibilités. Enfin, cette thèse propose une définition opérationnelle du mourir, une théorie de la pratique dans ses dimensions sociale, politique et morale et une analyse de la mise en application de la Loi concernant les soins de fin de vie et des enjeux d’exclusion qu’elle soulève auprès des personnes du grand âge en institution gériatrique. / This thesis focuses on social practices surrounding how elderly people die in geriatric institutions in a context in which dying with dignity is legislated (Act Respecting End-of-Life Care). More specifically, it examines the way in which practices surrounding how elderly people die shape their end-of-life trajectories. This thesis is based on the practice theory, which explores how human action is constructed and transformed by individuals in a given social world. Practice is defined as a set of embodied and shared doings and sayings. It is a product of history and culture and can vary according to the individual who carries it out. This ethnographic study (direct observations, formal and informal interviews with caregivers, and bereaved family members of elderly people) was conducted in two public institutions in Montreal: a residential and long-term care centre (CHSLD) and a hospital geriatric unit in 2017 and in 2018. The results of this thesis reveal an institutional context that is not compatible with the needs of elderly people facing the end of their lives, a context marked by a lack of resources—both time and human resources—and by difficulties to include support for those who are dying as part of their care mission. Despite this tense context, three practices surrounding how elderly people die have been documented. First, the preservation of a liminal state, through the implementation of devices designed to ensure the safety and physical health of these people without any particular attention being paid to the individual as a social being. While caregivers try to provide the best possible care, organizational and structural contexts restrict it. Second, decision-making at the end of life, or the negotiation of what is “right” and “enough,” takes into account the eminently moral stakes that modulate “access” to care at the final stage of life and the negotiations that take place between caregivers, family members, and the elderly. Third, the staging of dying, in which it is possible to truly grasp care as it is performed by caregivers, despite the shortfalls and the effective non-incorporation of the contributions of the new law concerning end-of-life care in the organization of care for the dying. At the same time, end-of-life trajectories are illustrated. They are not linear and are often synonymous with multiple transitions where several actors (family members, caregivers and institutions) negotiate different possibilities. Finally, this thesis proposes an operational definition of dying, a practice theory in its social, political, and moral dimensions, and an analysis of the implementation of the Act Respecting End-of-Life Care and the issues of exclusion it raises for elderly people in geriatric institutions.

No description available.

Bakgrund: Att vårda patienter som befinner sig i livets slutskede innebär att ta hänsyn tillden döende patientens helhet och situationen den befinner sig i. Det innebär även attkommunicera och skapa en förtroendefull relation med patienter och deras anhöriga. Syfte:Att beskriva sjuksköterskornas erfarenheter av att vårda patienter i livets slutskede.Metod: Systematisk kvalitativ litteraturstudie med en beskrivande syntes enligt Evans.Resultat: Två teman framkom efter analys, att vårda i livets slutskede är personligtengagerande och att utgå från patientens individuella förutsättningar och historia. Genomdessa två teman identifierades fyra subteman, som är att ge patienter en god död är viktigt,att vårda trots kommunikativa svårigheter, att utgå från patientens unika historia ochperson och att utgå från den unika patientens andliga och existentiella behov. Slutsats:Det framkom att sjuksköterskorna erfor personligt engagemang i vårdandet. Dels för att gepatienter vård som leder till god död och att vårda trots kommunikativa svårigheter.Sjuksköterskorna utgår från patientens individuella förutsättningar, historia och person samttar hänsyn till patientens unika andliga och existentiella behov.Nyckelord: Palliativ vård, livets slutskede, sjuksköterskans perspektiv, / Background: Caring for patients who are in the late phase of palliative care means that thenurse considers the whole of the dying patient and the situation the patient is in. It alsomeans communicating and creating a trusting relationship with patients and the patients'relatives. Aim: Describe nurses’ experiences of caring for patients at the end of life. Method:Systematic literature study with descriptive synthesis according to Evans. Results: Afteranalysis, two themes emerged, caring at the end of life is personally engaging and to proceedfrom the patient's individual conditions and history. Through these two themes, a total offour subthemes were identified. The four subthemes are to give patients a good death isimportant, to care despite communicative difficulties, to proceed from the patient's uniquehistory and person and to proceed from the unique patient's spiritual and existential needs.Conclusion: It emerged that the nurses experienced personal involvement in the care.Partly to give patients care that leads to good death, but also to care despite communicativedifficulties. To proceed from the patient's individual conditions, history and person andconsider the unique patient's spiritual and existential needs.Keywords: End of life care, experiences, nurses, palliative care,

Abstract  Background: Pain is a common symptom in the end-of-life phase for older individuals residing in specialized housing in Sweden. The nurse's role is to alleviate pain and provide person-centered support to the individual and their family members during end-of-life care.   Objective: The aim of this study was to describe nurses' experiences of using or not using assessment tools for pain assessment in older individuals in the end-of-life stage in community-based specialized housing.   Method: The study employed a descriptive design with a qualitative inductive approach. Eight semi-structured interviews were conducted and analyzed using qualitative manifest and latent content analysis.   Main Findings: The results revealed that nurses used pain assessment instruments, but not consistently. The decision to use these instruments depended on factors such as the design of the instrument, the individual being assessed for pain, and the context in which the assessment took place. Nurses perceived the use of pain assessment instruments as providing a comprehensive picture and described them as useful tools for evaluating the effectiveness of pain relief interventions. However, many found the Abbey Pain Scale difficult to use when they were unfamiliar with the individual being assessed or if the individual had dementia. Adherence to team protocols was crucial for implementing pain assessment using these instruments. Lack of time and prevailing workplace culture were described as barriers to the use of pain assessment instruments.   Conclusion: Nurses should practice based on scientific evidence and proven experience. Not all older individuals in end-of-life care in community-based elderly housing receive pain assessments using validated assessment tools, despite research indicating that those who undergo pain assessment also experience better symptom relief. Effective relief of distressing symptoms such as pain is central to person-centered care.  Keywords: Community-based specialized housing, person-centered care, pain assessment instruments, end-of-life care, elderly