No / Context. The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. Objectives. To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. Methods. A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. Results. Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. Conclusion. Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.

Palliative care is of value to the quality of life in people with terminal conditions when initiated early. The purpose of this literature review was to identify barriers to early initiation of palliative care consultation. The secondary purpose was to examine characteristics that prompt palliative care consultation. The TLC model of palliative care was used to explore palliative care in the critical care setting in people with terminal conditions. The concepts of the model support optimal palliative care as collaborative and comprehensive, with shared decisions made by the patient, practitioners, and loved ones. A literature review was conducted to identify common barriers to early initiation of palliative care consults in the critical care setting for people with terminal conditions. Peer-reviewed articles were retrieved from the EBSCOhost, Medical Literature On-Line (Medline), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Elsevier databases to evaluate their relevance to palliative care in the critical care setting. Twelve preliminary studies were selected for review per the inclusion criteria. Eleven studies identified education and legal factors as barriers. Six studies identified patient and family perceptions as barriers. Five studies identified practitioner-related bias as a significant barrier to consultation. Of the twelve articles reviewed, ten articles referred to palliative care in the adult ICU setting. Two articles included in the review examined barriers to palliative care in the neonatal and pediatric settings. The analysis of the data identified three categories as barriers to initiation of end-of-life care: practitioner-related bias, patient and family perceptions, and education and legal factors after a synthesis of the relevant literature was performed. Analysis of the articles suggests early identification of potential diagnoses for palliative consultation beginning in the intensive care unit (ICU) can improve symptom management, support, patient- centered care, and quality of life for people with terminal conditions. Barriers related to all three categories dominated the literature, with the most prominent being barriers related to education and legal factors. Results indicate that development and implementation of a palliative care referral tool can increase consultation for patients in the critical care setting with terminal conditions. Further education on the topic can increase understanding of palliative care services and improve provision of palliative care through early referrals and consultation.

Syfte. Intensivvårdssjuksköterskors erfarenheter av att vårda patienter i livets slutskede. Bakgrund. På intensivvårdsavdelningar i Sverige avlider 3-4000 patienter per år vilket föranleder att palliativ vård har börjat uppmärksammas inom intensivvården. Målet med vård i livets slutskede är att skapa bästa möjliga livskvalité för patient och anhöriga där sjuksköterskan med sin helhetssyn har en central roll. Design. Kvalitativ innehållsanalys. Metod. Semistrukturerade intervjuer genomfördes under hösten 2015 med elva intensivvårdssjuksköterskor på fem olika intensivvårdsavdelningar i tre olika landsting i Norrland. Intervjuerna spelades in, transkriberades och lästes igenom noggrant. Därefter analyserades materialet med hjälp av en kvalitativ innehållsanalys. Resultat. Sjuksköterskornas erfarenheter av att vårda patienter i livets slutskede illustrerades genom deras möjligheter att påverka beslut för god vård, vilket beskrevs som att känna delaktighet i besluten om vårdnivå. De såg sig som en resurs för anhöriga i svåra situationer då de inbringade trygghet, såg deras behov av information samt hjälpte dem att hitta fokus. För att sjuksköterskorna skulle samla kraft framkom vikten av ett ärligt och öppet arbetsklimat, samt möjligheter till debriefing. Genom att ge god omvårdnad i livets slutskede kunde sjuksköterskorna hjälpa patienterna få en god och värdig död. Slutsats. Sjuksköterskorna använde sig av olika kommunikativa färdigheter för att bygga upp en relation med patient och anhöriga. Sjuksköterskorna upplevde att många etiska problem uppstod i samband med besluttagande om vårdnivå, speciellt där oenighet fanns inom vårdteamet. De saknade specifik fortbildning och tydliga riktlinjer och det visade sig att sjuksköterskorna lärde sig ge vård i livets slutskede genom egna erfarenheter och av erfarna kollegor. / Purpose. Intensive care nurses experiences of providing end-of-life care. Background. At intensive care units in Sweden 3-4000 patients die every year, which causes palliative care to emerge in intensive care. The goal of the end-of-life care is to provide the best possible quality of life for the patient and it’s family, where the nurse with a holistic approach play a central part. Design. Qualitative content analysis. Method. Semi-structured interviews were conducted in the autumn of 2015 with eleven critical care nurses in five ICUs in three counties in northern Sweden. The interviews were recorded, transcribed and read carefully. The material was analysed using a content analysis. Results. Nurses' experiences of providing end-of-life care was illustrated by their ability to influence decisions for good care, which was descibed as a feeling of beeing involved in decisions about care level. They looked at themselves as a resource for families in difficult situations and conveyed a feeling of confort which could help the families to find focus and see the need for information. The nurses gathered strength by having an honest and open work environment, and opportunities for debriefing. By providing good care at the end-of-life the nurses were able to help patients recive a good and dignified death. Conclusion. The nurses used different communication skills to build a relationship with the patients and their families. The nurses felt that many ethical problems arose from decisions about the level of care, especially where disagreement existed within the care team. They lacked specific training and clear guidelines and it turned out that the nurses learned palliative care through their own experiences and by experienced colleagues.

Through the lenses of religion’s role in society, the purpose of this thesis is to examine, the role of the Church of Sweden in providing support to people at the end of life. Questions asked are:  "What types of spiritual support is offered by the Church of Sweden during terminal care provided in patients' homes and how is this support expressed in church orders, assembly instructions, plans of operations and congregation letters?" and " How can the work of the Church of Sweden be understood, based on theories of religion's role in society? The method used is a content analysis of the Church Order, assembly instructions, plans of operations and congregation letters in 17 different congregations within the diocese of Lund. I then engage in a discussion with theories on differentiation and the privatization of religion as a means to interpret my results. My conclusion is that the investigated parishes in the diocese of Lund do not have any specific goals or targets documented for spiritual support to people who are at life’s end cared in their homes. This can be understood based on theories of differentiation. The privatization of religion may explain the phenomenon that people's religious needs are not linked to the collective institutional religion of the Church of Sweden.  This is despite of the fact that a large proportion of the Swedish population belongs to the Church of Sweden. The de-privatization of religion, at a societal level can explain the reason why these concerns are attracting an increased interest from the healthcare services as people's need of spiritual support are discussed. The question of who should meet the patients' needs for spiritual support is unclear.

Palliativ vård i Sverige bedrivs både på sjukhus, Hospice, kommunala boendeformer och i patientens hem. Oavsett var vården bedrivs spelar de närstående en central roll och har rätt till individuellt anpassade stödåtgärder. För att kunna ge närstående detta behövs kunskap om deras erfarenheter och vilka domäner i livet de behöver stöd i. Syftet med studien var att beskriva och tolka erfarenheter av att vara anhörig till en person som i livets slutskede vårdas inom avancerad palliativ hemsjukvård, och dör på Hospice. Elva kvalitativa intervjuer genomfördes med närmast anhörig till patienter som vårdats vid en enhet för avancerad palliativ vård i södra Sverige. Datamaterialet analyserades med en fenomenologisk-hermeneutisk metod, inspirerad av Ricoeur. Fenomenet att vara anhörig till en person i livets slutskede innebar att delta i ett drama med okänt manus. Tre huvudteman framträdde – förändring, utsatthet och stöd. Fenomenet tolkades i ljuset av Eriksson teori om lidande, där lidandet beskrivs som ett drama. Då vårdpersonalen var medaktörer till den anhörige och bekräftade hennes lidande, lindrades lidandet. Stöd innebar att underlätta för den anhörige och den sjuke att vara regissörer i sitt eget lidandes drama, även då den sjuke fanns på Hospice. Detta stöd kan utvecklas med hjälp av familjefokuserade kommunikationsmodeller. / Palliative care in Sweden takes place both in hospital, hospice, municipal nursing homes, and in the patient's home. Regardless of where, family caregivers play a central role and are entitled to individualized support measures. In order to provide this, we need knowledge about their experiences and in which domains of life they need support. The purpose of this study was to describe and interpret the experiences of being next-of-kin to a person who, at the end of life, was cared for in advanced palliative home care, and died in Hospice. Eleven qualitative interviews were conducted with next-of-kin to patients in an advanced palliative care setting in southern Sweden. The data were analyzed using a phenomenological-hermeneutic method inspired by Ricoeur. The phenomenon of being next-of-kin to a person at the end of life meant participating in a drama with an unknown script. Three main themes emerged - change, vulnerability and support. The phenomenon was interpreted in the light of Eriksson's theory of suffering, where suffering is described as a drama. When caregivers were co-actors to the next-of-kin and confirmed her/his suffering, suffering was alleviated. Support meant helping next-of-kin and the ill person to be directors of their own drama, even when the ill person was in Hospice. This support can be developed by using family focused communication models.

Background: The purpose of end-of-life care is to relieve suffering and optimize quality of life. Important tasks for healthcare professionals are symptom alleviation and facilitate well-being. It is common for patients, who are treated palliative, to die within the surgical wards. The environment can be stressful and it is not always optimal for these patients to be cared for there. Aim: The aim was to describe how end-of-life care was delivered for patients in surgical wards, according to the nurses, with specific focus on the fundamentals of care. Method: Semi-structured interviews with 12 registered nurses in two surgical wards. The interviews were analysed using a qualitative content analysis. Result: The analysis resulted in three categories: The nursing needs of patients at the end-of-life, The organization's negative impact on patient care and Adapted care based on the patient and relative’s needs. The results showed that organizational factors such as lack of time and resources, but also lack of knowledge among the healthcare professionals, could lead to difficulties to fulfill both the physical and psychosocial needs of the patient. When a person-centered care was used the needs of the patients were easier to fulfill and the nursing care functioned in a better way. Conclusion: Person-centered care is an important part of end-of-life care. The healthcare professionals at surgical wards care for this patient-group in a dedicated way, and nursing around them usually operate well, except when there is a lack of time and more acute situations must be prioritized. There is a need to increase the knowledge of palliative care among the healthcare professionals. / Bakgrund: Palliativ vård i livets slutskede ska lindra lidande och främja livskvaliteten. Viktiga uppgifter för sjukvårdspersonalen som vårdar patienter i livets slutskede är att ge symtomlindring och underlätta välbefinnandet. Det är vanligt att patienter som vårdas palliativt i livets slutskede avlider inom slutenvården och på kirurgiska vårdavdelningar. På dessa avdelningar kan miljön vara stressig och det är inte alltid optimalt att denna patientgrupp vårdas där.  Syfte: Att beskriva hur sjuksköterskor ansåg att omvårdnaden genomfördes för patienten som vårdats i livets slutskede på en akutkirurgisk vårdavdelning, med specifikt fokus på de fundamentala delarna av vården. Metod: Semistrukturerade intervjuer med 12 sjuksköterskor från två kirurgiska vårdavdelningar. Data analyserades med kvalitativ innehållsanalys. Resultat: Analysen resulterade i tre kategorier: Omvårdnadsbehoven hos patienten i livets slutskede, Organisationens negativa inverkan på patientens omvårdnad och Anpassad vård utifrån patienten och dennes anhöriga. Resultatet visade att organisatoriska faktorer som tids- och resursbrist, men även kunskapsbrist hos sjukvårdspersonalen, gjorde att patienternas fysiska och psykosociala omvårdnadsbehov inte alltid blev tillgodosedda. När vården var personcentrerad och patienterna delaktiga ansåg sjuksköterskorna att omvårdnaden genomfördes på ett bättre sätt. Slutsats: En personcentrerad vård är viktigt för både patienter, som befinner sig i livets slutskede, och deras anhöriga. Sjukvårdspersonalen på akutkirurgiska vårdavdelningar är engagerade i denna patientgrupp och omvårdnaden kring dem fungerar oftast bra. Det händer dock att tiden inte räcker till för patientgruppens komplexa omvårdnadsbehov och andra akuta situationer prioriteras ibland före. Det finns ett behov av att öka kunskapen om palliativ vård hos personalen som vårdar dessa patienter.

Bakgrund: Att vårdas vid livets slut kan vara en stor omställning för både patient och närstående. Enligt tidigare forskning saknas kunskap om de närståendes upplevelser kring vården och blev därmed ett relevant område att forska vidare på. Sjuksköterskan har som ansvar att se till de närståendes behov samt kunna erbjuda information, stöd och delaktighet i en situation som beskrivs som påfrestande. Syfte: Syftet var att beskriva närståendes upplevelser av vård vid livets slutskede på vårdavdelningar. Metod: Litteraturöversikt. Åtta kvalitativa artiklar en kvantitativ artikel och en artikel med mixad metod samlades in från databaserna CINAHL Complete och PUBMED. Sökningarna begränsades till full text, peer reviewed, English samt avgränsning mellan 2006 och 2016. Resultat: Fyra teman framkom under analysen; kommunikationens betydelse för vård vid livets slut, relationens betydelse och behov av närhet, upplevelse av stöd, tröst och bemötande samt närståendes delaktighet vid livets slut. Kommunikationens betydelse var stor då många närstående upplevde informationen kring vården vid livets slutskede som bristfällig och således kände sig oförmögna att fatta rätt beslut. Även en del positiva och negativa aspekter vad gäller de närståendes upplevelse av stöd samt relationens betydelse för vårdandet framkom, vilket i sin tur ledde till deras chans till delaktighet. Diskussion: I resultatet framkom stora likheter vad gäller information och kunskap, alltså kommunikationen mellan sjuksköterska och närstående. En fungerande kommunikation ansågs enligt de närstående som en väsentlig faktor för hur upplevelsen av omvårdnaden utföll. Detta diskuteras utifrån Andersheds teori samt andra infallsvinklar och på vilket sätt de närståendes delaktighet påverkas. / Background: Receiving end-of-life care can turn into a big adjustment for both the patient and the next of kin. According to previous research the knowledge is inadequate regarding this type of care-giving, which turned out to be a relevant area for further research. The nurse carries a great responsibility when it comes to the wishes and requirements of the next of kin, and is also providing information, support and involvement in this trying situation. Aim: The aim was to describe how someone who is a next of kin might experience the end-of-life care in hospital wards. Method: Literature review. Eight qualitative articles, one quantitative article and one article with mixed method were collected from the databases CINAHL Complete and PUBMED. The searches were limited to full text, peer reviewed, in English and the years of publishing from 2006 to 2016. Results: Four themes emerged during the analysis; The importance of communication for end-of-life care, the relationship’s importance and the need of closeness, experience of support, comfort and attitude and next of kin’s involvement in end-of-life care. The importance of communication was vital. This emerged from the experiences the next of kin described as inadequate, and thus feeling unable to make the right decisions. Also, some positive and negative aspects regarding the next of kin’s experiences of support emerged. This included the meaning of the relationships for the caring, which leads to an improved chance for them to get involved. Discussion: The results showed great similarities in terms of information and knowledge, which leads to improved communication between the nurse and next of kin. Direct communication was considered, according to the next of kin, as an essential factor in the development of the perception of nursing care. This is discussed on the basis of Andershed’s theory, as well as other perspectives, of the nurses and the patients, and the way in which the next of kin’s involvement is affected.

Vivre avec une maladie pulmonaire obstructive chronique (MPOC), c’est vivre avec une maladie chronique, dégénérative et irréversible. La dyspnée qui l’accompagne demande une adaptation continuelle à de multiples incapacités. La qualité de vie des personnes vivant avec la MPOC s’en trouve compromise. Au Québec, le taux de mortalité de la MPOC a doublé depuis 20 ans. Si plusieurs études se sont intéressées à la symptomatologie vécue dans la dernière année de vie, aucune n’a abordé spécifiquement les perceptions de personnes vivant avec une MPOC sévère au regard de leur fin de vie. La présente étude avait justement pour but de décrire ces perceptions dans la perspective de la théorie de l’humain en devenir. Cette étude qualitative descriptive fut réalisée auprès de six personnes dans un centre hospitalier universitaire de la région de Montréal. L’analyse des entrevues a été réalisée selon la méthode de Miles et Huberman (2003) à partir de la transcription intégrale des entrevues. Cette analyse a permis de dégager quatre thèmes qui reflètent les perceptions des participants au regard de leur fin de vie, soit: 1) vivre et se voir décliner, 2) vivre et se préparer à mourir, 3) mourir d’une MPOC c’est étouffer et 4) mourir entouré à l’hôpital. Cette étude a mis en évidence que les personnes vivant avec une MPOC sévère souhaitent mourir à l’hôpital entouré de leurs proches. Cette étude contribue à une connaissance plus globale de l’expérience de fin de vie. De plus, elle propose des recommandations pour la recherche, la pratique, la formation et la gestion infirmière. / Living with chronic obstructive pulmonary disease (COPD) means living with a chronic, degenerative and irreversible disease. The associated disabilitated dyspnoea justified an adaptation to the multiples limitations. The quality of life is compromised. The mortality rate of COPD has a steadily increasing incidence. In Québec, it has doubled in the last 20 years. If many studies have been interested by the symptomatology during the last year of life, none have addressed specific interest to the perceptions concerning end of quality life. The aim of this study was to describe the perceptions of people living with severe COPD concerning end of life in the perspective of human living with is health. This descriptive qualitative study has been realised with six persons in a university hospital of the metropolitan area of Montreal. This analysis has been realised based on the integral transcripts of interviews as per the Miles and Huberman (2003) method. This study has permitted to identify four themes reflecting the perceptions concerning end of life. The themes were: 1) living and seeing decline, 2) living and preparing to die, 3) dying of COPD means dying of suffocation and 4) dying in the hospital surrounding by lovers. This study has permitted to the participants to express themselves concerning their perceptions of elements contributing to their end of life. So it has been show that people living with COPD wish to die in the hospital surrounding by lovers. In describing their perceptions of living with COPD, this study contributes to a more complete knowledge of the experience of the experience of a end of life when the death is coming. Furthermore, the study proposes some recommendations for the nursing research, practice, formation and management.

The purpose of this study is to explore what knowledge dementia caregivers have about advance care planning (ACP), how they learn to execute formal advance directives (ADs) or have engaged in an informal ACP process, and how they understand their roles as decision makers for the patients. Factors that contribute to the completion of an ACP process such as demographic, psychosocial, and situational factors are identified. From the grounded theory data analysis, a theory emerged about how ACP is accomplished and used by caregivers. Findings reveal that caregivers understand ACP as having the power to shape the dying process for dementia patients. It is not just about executing formal written ADs but how caregivers exercise that power. Caregivers’ knowledge and beliefs are reflected in their behavior regarding ACP in both how they do the ACP process and how they use ACP. For the caregivers in this study, the process of ACP occurs along a trajectory from: years before dementia to dementia diagnosis to end stage and death. At each of these stages, actions taken by the caregivers and their motivation are identified. Three key features of the ACP process in all three stages are examined: conversations within the family and with trusted others, gaining knowledge of ACP, and keeping ACP documents. How caregivers use ACP is based on how they define their roles as decision makers for their patients by: accepting responsibility for making difficult decisions regarding treatment for the patients, using ACP as an effective tool to shape the dying process for their patients, and doing battle with health care professionals to honor patients’ wishes. This definition is shaped by the meaning caregivers give to ACP, how caregivers understand life sustaining measures, and caregivers’ knowledge of patients’ end-of-life wishes. This new theory, the Dementia Caregiver Advance Care Planning Theory, adds new knowledge as the first model specific to dementia caregivers and adds dimension and depth to the current existing ACP models by detailing an ACP process, demonstrating the impact of conversations on the process, and identifying both the most important influences and the primary relationship in the decision making process.

Background: The US health care system faces increased costs from end of life (EOL) care. The intensive approach to EOL treatment with greater use of procedures in ICUs has led to decedent spending six times greater than that of survivors in the hospital. Experts in ICU and Palliative care fields have called for greater utilization of end of life planning and education. To date, EOL education has been dominated by the technologically driven medical field and the church has been under-utilized. The US population relies on clergy support for many mental health and EOL issues. Clergy report feeling uncomfortable in their ability to provide EOL care and desire more education. Research in clergy preparation for EOL education is relatively small and no studies in Virginia have been completed. Purpose: Document the current state of Richmond, VA, seminary education on EOL issues and document graduating seminarians' desire for more EOL education. Methods: A two-page questionnaire was approved by the VCU IRB and distributed amongst graduating seminarians at the three Richmond Theological Consortium seminaries: Union-PSCE, Baptist Theological Seminary at Richmond, and Virginia Union University Seminary. The first section of the survey evaluated education on EOL issues received while in seminary. Experience with counseling the dying and bereaved along with placement at medical institutions was also evaluated. The second section evaluated the desire for more didactic and practical education. Desire for future Continuing Education Classes was also evaluated along with demographics. SAS was utilized to create frequencies and chi square associations and odds ratios.Results: Overall, 75 surveys were returned, a 35% response rate. Eighty-six percent of respondents stated that pastoral care overall education was covered (missing = 20), while 38.3% stated that medical aspects of dying was covered (missing = 9). Fifty-seven percent had some kind of placement at a medical institution. Sixty-nine percent had experience in an EOL situation. Approximately 75% wanted more education, with practical education and pastoral care predominating. Forty-eight percent desired more theologically-focused EOL continuing education classes. Prior education in preaching sermons and pastoral care of the bereaved was associated with desire for further education in those respective topics, OR = 3.42, 95%CI 1.58, 11.05 and OR = 4.64, 95%CI 1.10, 19.50, respectively. Placement at an institution was associated with desire for more didactic (OR = 3.10, 95%CI 1.03, 9.35) and practical education (OR = 3.89, 95%CI 1.22, 12.35). Experience with counseling the bereaved was associated with a decreased likelihood of wanting more education on how to interact with medical and hospice staff. Demographics were not statistically associated with desire for more education.Conclusions: Several EOL topics do not receive full coverage, specifically self care of the pastor, teaching adults about end of life planning, the medical aspects of end of life, and mobilizing the laity for the care of the dying and bereaved. Placement at an institution or experience was absent in 30-40% of participants. The majority of participants wanted more education. Placement along with previous education was associated with desire for further education. Curriculum change to reflect these findings may benefit in increasing the overall confidence and competence of pastors, increase the ministerial goals of the church, and aid in preparing the public for the end of life, thus decreasing the burden on the health care system.