<p>Problem: Family members of patients dying in the ICU are faced with agonizing dilemmas, the consequences of which might haunt them for a lifetime. Providing these family members with meaningful support and information is imperative. Nurses, by virtue of the time spent at the bedside and knowledge of patient and family needs, are in a unique position to support family members. The literature provides ample studies of how nurses perceive they are involved in EOL decision-making and several studies describing what family members perceive that they need from health care professionals in general. What is lacking is literature that describes the family members' perceptions of the specific strategies that nurses use to support their decision-making and how family members respond to these strategies. Because nurses might act on instinct, the strategies they use might or might not be helpful to family members. This study builds on prior work by exploring in greater depth the involvement of nurses in EOL decision-making, the specific strategies that family members perceive nurses using, and how family members respond to these strategies. This study aims to explore how family members respond to nursing strategies to support EOL decision-making, including family members perceptions of the strategies nurses use, how these strategies change over the trajectory of decision-making, and how these strategies affect their ability to make decisions consistent with the goals of the patient and their ability to cope with the stress of making EOL decisions.</p><p>Methods: Chapter two describes a systematic review of the literature that was conducted to define areas where research is needed. Chapter three describes a pilot case study that was conducted to determine the feasibility of conducting a prospective longitudinal study of family members making EOL decisions for their loved one in an ICU. Chapter four describes a prospective, longitudinal, qualitative descriptive study. In this study, the PI identified ICU patients who were likely to need complex decision-making and used narrative style interviewing techniques to explore the family members' perceptions of the strategies nurses use and the effectiveness of these strategies. Participants were recruited from a 16 bed adult medical ICU and a 16 bed surgical ICU at Duke Hospital, a tertiary care university hospital system.</p><p>Results: These studies identified three roles enacted by nurses: information broker, supporter, and advocate. While enacting these roles, nurses used a myriad of strategies categorized into five approaches: Demonstrate concern, build rapport, demonstrate professionalism, provide information, and support decision-making. This study provides empirical evidence that when interacting with family members of patients who were transitioning from curative to palliative care in the ICU, nurses used strategies that helped family members cope, to have realistic hope, to have confidence and trust, to prepare for the impending loss, to accept that their loved one was dying, and to make decisions. These findings also suggest that nurses were able to demonstrate flexibility in the use of the strategies, responding to the needs of the family members. </p><p>Although nurses used many helpful strategies to support family members, some nurses used strategies that negatively affected the family members' trust and confidence in the nurses, increased their difficulty coping, and, in some cases, might have delayed decision-making. Few of these strategies have been previously described in the nursing literature. </p><p>Summary: Knowledge from this study will pave the way for developing expert nursing practices for intervention studies targeting the areas identified as important by family members, most likely to improve their ability to make decisions on behalf of their loved one and to improve their well-being, and feasible in ICU environment.</p> / Dissertation

Syftet med litteraturstudien var att beskriva hur hälso-och sjukvårdspersonalens bemötande påverkar närstående till personer som vårdas palliativt samt beskriva närståendes behov av stöd under vårdtiden. Vidare var syftet att granska inkluderade artiklars design. Litteraturstudien var av beskrivande design och inkluderade 13 artiklar som söktes fram i databaserna PubMed och Academic Search Elite samt genom manuell sökning. Huvudresultatet visade att närstående var närvarande dygnet runt vilket begränsade deras frihet samt att bidragande stöd kunde lindra vårdtyngden och underlätta för närstående. Stödet från hälso- och sjukvårdpersonal beskrevs både som svagt och tillfredställande. Information saknades och var ibland motstridig och bristfällig. Relevant information kunde minska vårdtyngden, känslor av rädsla, osäkerhet och ensamhet samt underlätta till att behålla kontroll. Delaktighet samt involvering i omvårdnaden och beslutsfattandet var starkt stödjande samt ett sätt att behålla kontroll. Närstående tappade lätt kontroll då det professionella stödet inte var tillgängligt eller saknades helt, informationen var bristfällig samt då resurserna var otillräckliga. Det var viktigt att personalen tog sig tid, såg närstående, talade direkt till dem samt bekräftade dem. Slutsatsen bedömdes vara att närstående har ett behov av stöd under vårdtiden genom delaktighet, information och kontroll. Ett positivt och stödjande bemötande från hälso- och sjukvårdpersonalen kan stärka närstående. / The purpose of this study was to describe how health care professionals’ standard of conduct affects next of kin to people in palliative care and describe what support next of kin were in need of during time of care. A further aim was to examine the included articles´ design. The literature study was of a descriptive design and included 13 articles that were searched in PubMed, Academic Search Elite and by manual search. Main results showed that next of kin were present around the clock which limited their freedom. Contributing support could alleviate the care burden and facilitate next of kin. Support from health care professionals was described as both weak and satisfying. Information was lacking and was sometimes conflicting and inadequate. Relevant information could reduce care burden, feelings of fear, uncertainty and loneliness and also facilitate the retention of control. Participation and involvement in care and decision-making was highly supportive and a way to maintain control. Next of kin easily lost control when professional support was not available or missing entirely, when the information was incomplete and resources were inadequate. It was important that the staff took the time, saw to the next of kin, spoke directly to them and confirmed them. The conclusion were that next of kin has a need for support during the time of care through participation, information and control A positive and supporting response from health care professionals can strengthen next of kin.

Kiekvienos valstybės viena iš prioritetinių politikos krypčių yra visuomenės ir asmens sveikata. Tačiau, kad ir stengiamasi užtikrinti žmogaus sveikatos apsaugą, kiekvieną dieną visame pasaulyje žmonės neišvengiamai susiduria su mirtimi. Kai kuriose valstybėse, kalbant apie nepagydomai sergančius ligonius, kurie kenčia didelius skausmus ar apie komos ištiktus žmones, vis dažniau iškeliamas eutanazijos klausimas, kuris dažnai apibrėžiamas kaip sąmoningas žmogaus gyvybės atėmimas kiek įmanoma švelnesnėmis priemonėmis, atliekamas vien marinamojo labui. Vis dėlto eutanazijos įteisinimo klausimas yra opus ir visada lydimas aršių debatų tarp jos šalininkų bei priešininkų. Šio darbo tikslas yra aptarti eutanazijos įteisinimo aspektus bei ištirti Lietuvos visuomenės požiūrį aprašomo reiškinio atžvilgiu. Visas pirmasis darbo skyrius skirtas teorinio modelio aprašymui. Šio skyriaus poskyriuose, atliekant mokslinės literatūros analizę, aptariami viešosios politikos formavimo ir interesų grupių teoriniai modeliai, kuriais grindžiamas šis darbas. Antroji dalis skirta eutanazijos politikai apžvelgti. Poskyriuose aptariamas eutanazijos reiškinys, jos rūšys ir interesų grupių argumentai už ir prieš eutanazijos politiką. Taip pat analizuojami ir lyginami eutanazijos įteisinimo atvejai Nyderlanduose ir Belgijoje. Trečioji dalis skirta praktinei darbo pusei aprašyti. Pristatomas Lietuvoje atliktas empirinis kiekybinis tyrimas, kuriuo buvo siekiama ištirti Lietuvos visuomenės – medikų... [toliau žr. visą tekstą] / Public and personal health is one of the priority policies of every state. However, despite the attempt to ensure the protection of human health, every day people in all over the world inevitably come face to face with death. While talking about the incurable patients, who suffer from severe pain or are in coma, some countries raise the question of euthanasia, which is often defined as the intentional taking of a person‘s life for the good of that person by the means as delicate as possible. However, the legitimation of euthanasia is a sensitive issue, always accompanied by the savage debates between its supporters and opponents. The aim of this work is to discuss the aspects of the legitimation of euthanasia and to investigate the attitude of Lithuanian society towards the described phenomenon. The first part of this paper discloses the theoretical description of the model. Using the analysis of scientific literature, the subchapters discuss the theoretical models of public policy formation and interest groups, on which this work is based. The second part reviews the policy of euthanasia. The subchapters discuss the phenomenon of euthanasia, its types and the arguments of interest groups for and against the policy of euthanasia. Moreover, the cases of the legitimation of euthanasia in the Netherlands and Belgium are analyzed and compared. The third chapter is devoted to the practical part of the work. The quantitative empirical study accomplished in Lithuania, which has... [to full text]

Timely access to end-of-life care is a growing problem. One under-referred group is adults who die shortly after cancer diagnosis. This group’s challenges include a lack of definition for short diagnosis-to-death (SDTD), and inability of health care providers to identify risks for SDTD. Research indicates socioeconomic factors may influence access to end-of-life care, though how is unclear. This study used recursive partitioning methods to define SDTD for decedent adults with colorectal cancer and identify socioeconomic predictors of SDTD. SDTD was defined as less than 18.5 days. Socioeconomic predictors included long-term care residence and community-level characteristics such as education, immigration, marital status, Aboriginal status, and income. Results showed existing SDTD timeframes may be too long to adequately understand the population’s needs, and indictors of risk may be unique for this population. Additional research could establish consistency for defining SDTD and clarify the utility of socioeconomic predictors for mitigating barriers to care.

Bakgrund: Att vara närstående vid livets slut och att förlora en av sina närmaste är oftast mycket svårt. Närstående kan ha behov av stöd efter dödsfallet för att kunna hantera sin situation och sorg. Den palliativa vården grundar sig på fyra hörnstenar där en är stöd till närstående. Palliativa verksamheter erbjuder olika former av stöd till närstående en tid efter patientens död. Syfte: Syftet var att belysa närståendes erfarenhet av stöd efter dödsfall i palliativ vård. Metod: Studien genomfördes som en litteraturstudie och baserades på tolv kritiskt granskade kvalitativa och kvantitativa artiklar. Litteratursökningen har utförts i databaserna PubMed, Psycinfo och Cinahl. Resultat: De behov som beskrivs och identifieras i resultatet är: praktiskt stöd med underkategorier: vägledning och socialt stöd samt emotionellt stöd med underkategorier: hantera sorgeprocessen, trygghet och tillit och själslig balans. Slutsats: För att möjliggöra stöd till närstående är det viktigt att vårdpersonalen erbjuder och informerar om vilket stöd de kan ge. Vårdarna behöver vägledning i vilket stöd de kan erbjuda och till vem/vilka stödet riktar sig till. Närståendes behov av stöd kan se olika ut. Att identifiera de närståendes som är i behov av mest stöd är något som behöver utvecklas inom den palliativa vården. / Background: Relatives or close friends may be in need of support following the death of a loved one. Palliative care is based on four keystones, one being support to relatives or close friends. Palliative care units offer various types of support for some time after the patient ́s death. Aim: To investigate relatives ́ or close friends ́experience of support in an end-of-life situation in a palliative care context. Method: The study was in the formof a literature review based on twelve critically examined qualitative and quantative studies. The literature search was conducted in the PubMed, Psycinfo and Cinahl databases. Results: The needs which are identified in the result are practical needs such as guidance and social support and emotional needs such as coping with the grieving process, confidence, trust and inner balance. Conclusion: It is important that healthcare professionals not only offer supportin general, but also communicate what type of support they can give. Healthcare professionals themselves need guidance in this area. Relatives and close friends have varying needs of support and identifying the type of need and above all identifying who is in most need is something which palliative care should develop.

Bakgrund: Att drabbas av ALS är traumatiskt för den drabbade människan och leder vanligtvis till en drastisk förkortning av livet. Att inte försonas med sitt öde kan innebära att den sista tiden i den döende människans liv innefattar förtvivlan och dödsångest. Därför är det viktigt med kunskap om försoning hos vårdpersonal. Syfte: Studien syftar till att undersöka om och i så fall hur människor med diagnosen ALS ger uttryck för försoning med sin dödliga och snabbt progressiva sjukdom. Metod: Analysen utfördes inspirerat av Lundmans och Hällgren Graneheims (2008) metod för kvalitativ innehållsanalys för att undersöka de latenta uttrycken för begreppet försoning. Analysen utfördes på fyra självbiografier. Resultat: Stunder av försoning kan uttryckas som uthärdligt lidande, stunder med upplevelser av tillfredsställelse samt skapande av upplevelser av trygghet genom existentiella funderingar. Faktorer som kan möjliggöra stunder av försoning kan vara utvecklande av nya perspektiv, tröst som resulterar i frånvaro av rädsla och genom meningsskapande av livssituationen. Slutsats: Upplevelser av försoning kan komma till uttryck på många olika sätt utifrån individuella faktorer, som social kontext och värderingar. Upplevelser av försoning kan inträffa under korta och pendlade perioder och är inget konstant tillstånd. / Background: To suffer from amyotrophic lateral sclerosis is traumatic for the affected individual and usually leads to a drastic shortening of life. The absence of reconciliation towards the dying person´s destiny may lead to that the remaining part of life comprises despair and agony. Therefore, it is important for care givers to have knowledge about meaning of reconciliation.  Aim: The study aims to examine whether, and if so, persons diagnosed with amyotrophic lateral sclerosis express reconciliation with their deadly and rapidly progressive disease. Methods: The analysis performed was inspired by Lundman´s and Hällgren Graneheim´s (2008) method of qualitative content analysis to examine the latent expressions of the concept of reconciliation. The analysis is based on four autobiographies. Results: Moments of reconciliation can be expressed as bearable suffering, experiences of satisfaction and experiences of safety through existential thoughts. Factors that could enable moments of reconciliation may be the development of new perspectives, comfort which results in the absence of fear and through creation of a meaning of life situation. Conclusion: Experiences of reconciliation can be expressed in many different ways based on individual factors such as social context and values. Moments of reconciliation can occur over short periods and are not a constant condition.

No description available.

Cerebral vascular accidents (CVAs) rank as the third leading cause of death in Canada with more than 50,000 of these events occurring annually. The evidence base from which to provide end-of- life care to patients dying from a CVA is currently limited, and there is a dearth of research examining the experiences of nurses charged with the responsibility of caring for these patients. In order to begin to address this gap in the literature, a qualitative study, using van Manen’s interpretive phenomenology was conducted to examine and describe the lived experiences of nurses working on an acute neurosciences unit in a tertiary hospital. Nine nurses were interviewed initially, and two nurses participated in follow-up interviews to confirm the interpretation of the data. This manuscript will discuss the essence of nurses’ lived experience in caring for these patients, as well as implications for education, practice, and future research.

Palliative care for non-dominant ethnocultural groups is problematized in the palliative care literature, which often presents essentialist conceptions of cultural beliefs on death and dying. Death is often portrayed as a taboo topic within the Chinese community, and thus, the assumption is that dying at home may not be the preferred option. Beyond these stereotypical representations, little is known about what it is like for Chinese immigrants with terminal cancer to receive palliative home care. Home is a complex site where cultural “difference” becomes contextually salient when home care providers introduce palliative care. More is potentially at stake than the violation of a taboo, as Chinese immigrant care recipients, their family caregivers, and home care providers negotiate changes to the existing routines of the home. The purpose of this study was to examine how meanings of home condition negotiations of care between Chinese immigrants with terminal cancer receiving palliative home care, family caregivers, and home care providers. Postcolonial theory provided a critical lens for this focused ethnographic study of palliative home care for Chinese Canadian immigrants. The analysis drew on postcolonial concepts such as Othering, subjugation, and hybridity. The methods included interviews with 11 key informants, and observational visits and interviews were conducted in 4 cases of Chinese immigrant care recipients, their family caregivers, and home care nurses. Two major findings emerged: 1) colonization and distancing and 2) negotiating hybridity. The meaning of home was deeply altered as palliative home care occupied care recipients’ and family caregivers’ everyday lives and represented a form of micro-colonization - the home was metaphorically invaded. The ambivalent relationship between care recipients and home care providers was characterized by a mutuality of need, but care recipients used distancing as a way to resist colonization. Palliative care presented its own unique cultural influence, which was imbued with meanings, beliefs, and practices. For care recipients, the meaning of dying at home was fluid, situational, and contextually informed. Subsequently, differences were created and highlighted in the confrontation between the meaning of palliative care for home care providers and the meaning of dying at home for care recipients. It was in the meeting, blending, clashing, and grappling of differences where participants had to negotiate and generate new, hybrid meanings and practices so that particularized, personal approaches to dying could be achieved. The findings capture the realities and complexities of palliative home care, and highlight the sophisticated and evolving ways providers come to know and care for care recipients and families in their homes. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. A key implication is the need to move away from simplistic conceptualizations of culture to a critical approach that will enable providers to understand and find comfort in working with the fluid, dynamic, and contextually-driven nature of culture and dying at home.

SAMMANFATTNING                                                                                             Syftet med interventionsstudien var att undersöka om ROAG (revised oral assessment guide) munbedömningsinstrument förbättrade sjuksköterskor bedömning av cancerpatienters munhälsa på en palliativ vårdenhet. Metoden hade en kvasiexperimentell design med en journalgranskning före och efter en intervention. Interventionen bestod av en kortare utbildning av munhälsa samt införandet av ROAG munbedömningsinstrumentet. Resultatet visade att både bedömningar och åtgärder av munhälsan har ökat statistiskt signifikant jämfört med före interventionen på den palliativa vårdenheten, resultatet visar också att det inte alltid finns rätt koppling mellan symtom och åtgärd. Slutsats ROAG munbedömningsinstrument är ett bra verktyg för sjuksköterskor att använda för att bedöma munhälsan på en palliativ vårdenhet, men det räcker inte bara med ROAG munbedömningsinstrument utan det behövs kontinuerlig utbildning för att förbättra bedömningar och åtgärder . / ABSTRACT The purpose of the intervention study was to investigate whether ROAG (Revised oral assessment guide) improved nurses’ estimation of cancer patients’ oral health at a palliative care unit. The method was of a quantitative design with a quasi-experimental survey. Medical records were studied before and after an intervention, which consisted of a brief lecture on oral health and an introduction of ROAG. The results show significant increase in both assessment and measure of oral health after the intervention at the palliative care unit compared to before the intervention. The result also shows that the link between symptom and action does not always correspond to each other.   In conclusion, ROAG oral assessment is a great instrument for nurses to evaluate oral health at a palliative care unit, although it is not enough. Continuous education is required to improve evaluation and intervention.