Bakgrund: Döden är något varje individ kommer att möta och i samband med detta uppstår många tankar och känslor. Det är viktigt att vårdpersonalen har kunskap om detta för att kunna ge en god vård. Inom palliativ vård är huvudmålet att främja välbefinnandet hos patienter i livets slutskede. Syfte: Att belysa patienters upplevelserav att leva nära döden i palliativ vård. Metod: En litteraturstudie gjordes där tio kvalitativa studier granskades. Resultat: Granskningen av de vetenskapliga artiklarna resulterade i fyra rubriker, upplevelser av meningsfullhet inför döden, upplevelser av acceptans inför döden, upplevelser av att pendla mellan hopp och förtvivlan inför döden och upplevelser av ensamhet inför döden. Slutsats: Resultatet i studien visade på att många tankar och känslor uppkommer i samband med döden. Patienter väljer att isolera sig mot omvärlden och upplever därför en ensamhet. Genom acceptans kunde patienter finna mening vilket var mycket betydelsefullt för dem. Resultatet av studien kan bidra till en bättre förståelse för vårdpersonal som möter patienter i livets slutskede. / Background: Death is something that every human will face someday and in relation to this many thoughts and feelings will arise. It’s important that the healthcare staff have the knowledge to meet this thoughts and feelings to encourage a good care. In palliative care, the main goal is that the patients have a good quality of life at the end of life. Aim: To illumine patient’s experiences of facing death in palliative care.Method: A literature review was made and ten qualitative studies were used.Results: The research articles led to four categories, experience of meaningfulness near death, experience to acceptance near death, experience to seesaw between hope and despair near death and experience of loneliness near death. Conclusion: The results showed that many thoughts and feelings were developed among the patients in the relation to facing death. Patients chose to insulate themselves from the outside world and expressed that they felt loneliness. By acceptance of facing death the patients were more able to find meaning in life which became a very important thing in their lives. The results can contribute to a better understanding among the healthcare staff.

Bakgrund: Cancer är en vanligt förekommande sjukdom där antalet diagnostiserade ökar. Sjuksköterskan kan i sitt yrke möta dessa patienter, därför är det en fördel att få en djupare insikt om dessa patienters upplevelser. I livets slutskede är upplevelsen av livskvalitet av betydelse. Begrepp som är betydelsefulla för livskvaliteten är hälsa, lidande och hopp. Syfte: Studiens syfte var att belysa faktorer som påverkar livskvaliteten i livets slutskede hos patienter med cancer. Metod: En litteraturbaserad studie som utgår från tolv kvalitativa vetenskapliga artiklar. Resultat: Ur analysen framkom tre kategorier; viljan att fortsätta leva som vanligt, känslomässigt förhållande till andra och kunna hantera tankar och känslor om liv och död med nio underkategorier. Diskussion: För patienter medför det utmaningar i livet att insjukna i cancer. Utmaningar består av att hålla fast vid sina rutiner i det dagliga livet, sina relationer, finna mening och vara hoppfull. Konklusion: Studien belyser betydelsen av att vårdpersonal uppmuntrar och stödjer patienten i att hålla fast vid sociala kontakter eftersom sociala relationer är betydande för patientens livskvalitet. Studien påvisar att patienter kan känna sig obekväma när de tvingas tala om döden vid fel tillfälle, därför bör vårdpersonal vara lyhörda kring patientens mottaglighet att samtala om döden. / Background: Cancer is a common disease in which the number of diagnosed increases. In the nursing profession it’s possible to encounter this group of patient’s and therefore it’s an advantage to get a deeper insight of these patients' experiences. In the end of this patient’s life the experience of the quality of life is significant. Concepts that are important of the quality of life are health, suffering and hope. Aim: The aim of this study was to illuminate the factors that affect the quality of life of terminally ill patients with cancer. Method: A qualitative literature based study based on twelve qualitative research articles. Results: Three categories emerged from the analysis; the desire of continuing living as usual, emotional relationships to others and be able to manage thoughts and feelings about life and death with nine subcategories. Discussion: For patients, it brings challenges to life by developing cancer. Challenges of sticking to their routines of daily life, their relationships, find meaning and to be hopeful. Conclusion: The study highlights importance of encourage and support from the health professionals to help patient keep their social contacts, because it’s significant for the patient’s quality of life. The study demonstrates that patients may feel uncomfortable when forced to talk about death at the wrong time, therefore health professionals should be more keen about the patient’s susceptibility to talk about death.

Bakgrund: Målet med palliativ vård är att lindra patientens lidande, där är kommunikation samt relation en av de fyra hörnstenarna. Sjuksköterskans kommunikation är yrkesrelaterad och av stödjande karaktär, där respekt, tillit och trygghet är viktigt. Syfte: Att beskriva sjuksköterskors erfarenheter av att kommunicera med patienter i livets slutskede samt att beskriva de ingående studiernas undersökningsgrupper. Metod: En beskrivande litteraturstudie som baserades på tretton artiklar med kvalitativ ansats. De söktes fram via databaserna Cinahl och PubMed/MEDLINE samt genom manuell sökning. Resultat: Sjuksköterskans kommunikation är essentiellt i vårdandet av patienter i livets slutskede. Förutsättningar för det goda empatiska samtalet var sjuksköterskans roll som aktiv lyssnare och dennes förmåga till att vara medmänsklig, ärlig samt empatisk. Yrkeserfarenhet ansågs gynna kommunikationen och oerfarenhet försvårade den. Kommunikationen mellan sjuksköterska och patient kunde väcka svårhanterade känslor hos sjuksköterskan, exempelvis frustration. Påverkbara faktorer var tid, prioriteringar och miljöaspekter samt icke-verbal kommunikation. Ytterligare påverkbara faktorer avseende kommunikation var religiösa övertygelser samt kulturella skillnader och normer. Samtliga artiklar beskrev och presenterade deltagarnas arbetsplats. Deltagarna i fyra av tretton studier arbetade med palliativ vård. Alla studier beskrev i vilket land studierna genomfördes och fyra av tretton studier genomfördes i Norden. Fyra studier presenterade inte yrkeserfarenhet eller ålder. Slutsats: Sjuksköterskor har olika erfarenheter av att kommunicera med patienter i livets slutskede och kommunikation är central i omvårdnaden. Kommunikation bör därför utgöra en större del i sjuksköterskeutbildningen, för att nyexaminerade sjuksköterskor ska känna sig väl förberedda inför yrket. / Background: The aim of palliative care is to relieve the suffering of the patient, where communication and relationship constitutes one of the four cornerstones. The nurses' communication is professional and supportive, where respect, trust and a feeling of security are essential. Aim: To describe nurses' experiences of communicating with patients at the end of life and describing the characteristics of the study participants in the reviewed studies. Method: A descriptive literature study, which was based on thirteen articles with a qualitative approach. The articles were found in the databases Cinahl and PubMed/MEDLINE and through manual search. Results: Nurses' way of communication is essential in the care of patients at the end of life. Prerequisites for a good emphatic communication are the nurses' role as an active listener and to have the ability to be compassionate, honest and empathic. Professional experience was considered beneficial to communication, since inexperience often seem to hampered it. The communication between the nurse and the patient could raise emotional reactions which were difficult to handle for the nurse, such as frustration. Factors that influenced communication was time, priorities and environmental aspects as well as the non-verbal communcation, religious beliefs and cultural differences and norms. All articles presented the participants workplace. Participants in four out of thirteen studies worked with palliative care. All studies presented the country in which they were made and four studies where made in Scandinavia. Four articles didn't present work experience nor age. Conclusions: Nurses' have different experiences of communicating with patients at the end of life and the communication is a central part of nursing care. Communication should be a major part of nursing education, because newly graduated nurses should feel well prepared for the nursing profession.

Background: Palliative care is a support system to help people live actively until they die. Current policy aims to integrate rehabilitation and goal setting as mechanisms to help professionals to support patients to do this, but there is little agreement about what this means in practice. No theory based framework currently exists to help palliative care professionals consistently work with patients to identify and work towards goals. This thesis describes how a framework for goal setting and action planning in palliative care (G-AP PC) was developed and implemented systematically in one hospice. Research aims: 1. To synthesise published literature regarding goal setting in palliative care settings. 2. To investigate current goal setting practice in one hospice setting. 3. To develop and evaluate a theory and evidence-based goal setting intervention for palliative care settings. Study design This study is placed in the ‘development and feasibility’ phases of the Medical Research Council (MRC) framework for developing and evaluating complex interventions. The intervention (G-AP PC) was systematically developed. Firstly a rigorous investigation of current practice was conducted by synthesising the literature on the subject, and investigating current goal setting practice in one hospice setting. These findings informed the development of a theory-based Goal setting and Action Planning practice framework (G-AP PC) which was then implemented and evaluated in one hospice in-patient unit. Normalization Process Theory (NPT) was used to structure the development and evaluation of the intervention. Findings: Goal setting with patients is recognised as important within palliative care, but is poorly conceptualised and lacks a theory and evidence-base for its practice. G-AP PC was successfully developed, implemented and evaluated in one hospice setting. Findings demonstrate that G-AP PC is acceptable and feasible for use by professionals and patients alike. It helped professionals to work as a team; shift their attention from symptoms/problems/risk to patient’s goals; act on what patients wanted to achieve, within short timescales and document patients goals appropriately. Patients reported that use of G-AP PC allowed them to focus on goals that were important to them. There was also evidence that goal setting helped increase patients’ motivation and self-efficacy. Conclusions: G-AP PC is a feasible and acceptable intervention. The study has demonstrated that the interventions can increase patient centred goal setting and motivates both patients and staff to work towards and achieve patient goals that are not only about controlling symptoms but also about engaging in meaningful activities, enabling patients to live actively until they die.

No description available.

Hospital-based specialist palliative care services are designed to address the needs of critically ill patients by psychosocial and spiritual support, improving symptoms management, and offering discussions on goals of care. Integrating palliative care upstream in the care continuum for patients who eventually die in the hospital will help to address the many individualistic needs of the critically ill patient. The diffusion of specialist hospital-based palliative care services requires an understanding of patterns of utilization by patients. The purpose of this study was to examine the population characteristics of decedents who may or may not have utilized specialist palliative care services in a hospital setting in order to develop a model of predictors of access to specialist palliative care services. The basic constructs of this study are grounded in the Behavioral Model of Health Services Use. Potential access is measured in terms of population characteristics, which include predisposing characteristics, enabling resources, and evaluated need. Building on this theoretical model, the study sought to better understand equitable and inequitable access to specialized palliative care services and to define which predictors of realized access were dominant. The research question asked was: What are predictors of access to specialized palliative care within a large urban public teaching hospital? A model of access to a palliative consult and a predictor of access to a palliative care unit were explored. Findings from this study revealed that factors encouraging access to a palliative care consult include older age, White non-Hispanic ethnic membership, a diagnosis with solid cancer and insurance. Factors encouraging access to a palliative care unit include older age, gender (female), insurance, and either a solid cancer or hematologic malignancy diagnosis.

Nurses perform a vital role in the care of dying patients and their families. Hence, experiences of nurses are a meaningful source from which to advance holistic end-of-life care. In this study, a hermeneutic phenomenological perspective was used to explore the phenomenon of end-of-life nursing care. Details derived from a scientific exploration into the experiences of 13 registered nurses who provided care for patients and families at end-of-life in the inpatient hospital setting offer understandings regarding this important phenomenon. The hermeneutic phenomenological methods of Max van Manen guided data collection and analysis. Three main themes described the participants’ experience of nursing care at end-of-life: “Confronting Challenges,” “Coming to Understand End-of-Life Care,” and “Transforming the Understanding of End-of-Life Care into Nursing Practice.” Recommendations for nursing education, practice, and research were derived.

La détresse des Hommes en fin de vie constitue le sujet de cette thèse doctorale de psychologie. La détresse est un défi pour les soins palliatifs. Elle interpelle, convoque les soignants dans leurs limites à supporter la souffrance d’autrui. Elle devient l’enjeu de débats pour la société avec des réponses telles que l’euthanasie et l’altération de la vigilance encore appelé sédation. Cette étude a pour objectif d’étudier cette détresse à travers la rencontre des psychologues avec leurs patients. Elle vérifie en particulier l’hypothèse d’une articulation de la détresse avec une crise d’identité générée par la maladie létale. Elle étudie la participation éventuelle du mécanisme de la dissociation à la co-existence de la détresse et du bien-être. Plus largement elle analyse la fonction thérapeutique des entretiens psychologiques proposés aux patients. Méthode : pendant un an, 14 psychologues analysent leurs accompagnements au moyen d’un livret. Pour contrôler les résultats, un second groupe de 12 psychologues répartis en France réitère l’expérience. L’analyse statistique est réalisée avec STATA 10.0 et la partie libre avec Alceste. Résultats : 801 entretiens réalisés auprès de 237 patients âgés en moyenne de 67 ans (33-95) démontrent que la maladie létale génère une crise identitaire dont le vécu est la détresse. L’évolution longitudinale des entretiens démontre une métamorphose identitaire possible et une réduction de la détresse. Discussion : L’intersubjectivité des entretiens restaure le sentiment d’être soi même à proximité du décès. Conclusion : La détresse peut se résilier si un cadre thérapeutique est proposé pour accompagner les ruptures du sentiment d’être soi et sa métamorphose. / The plight of Men in late life is the subject of this doctoral thesis in psychology. Distress is a challenge for palliative care. It questions caregivers in their limits to bear the suffering of others. It becomes a burning issue in society and raises debates with answers such as euthanasia and induced coma (also called sedation). This study aims at investigating this distress through the encounter of psychologists with their patients. It verifies in particular the assumption of a link between distress and an identity crisis generated by the lethal disease. It studies the possible participation of the dissociation mechanism to the co-existence of distress and well-being. More broadly this thesis analyzes the therapeutic function of psychological interviews offered to patients. Method: for one year, 14 psychologists analyze their accompaniments using a booklet. To check the results, a second group of 12 psychologists throughout France reiterates the experience. Statistical analysis was performed with STATA 10.0 and the free part with Alceste. Results: 801 interviews conducted among 237 patients aged 67 years (33-95) demonstrate that the lethal disease generates an identity crisis which is experienced by the patients with a feeling of distress. The longitudinal course of the interviews shows a possible identity transformation and distress reduction. Discussion: intersubjectivity interviews restore a sense of self even near death. Conclusion: The distress may terminate if a therapeutic framework is proposed to accompany the ruptures in the sense of self and its metamorphosis.

Background: Long-term care nurses are in a pivotal position to be augmenting the quality of life for residents and improving the death and dying experience for residents, their family members and surrogate decision makers. Currently there is a paucity of literature that acknowledges the experiences of long-term care nurses and their involvement with end-of-life decision making and care. Purpose: To describe long-term care nurses’ perceptions of factors that influence their communication with end-of-life surrogate decision makers and the kind of support they need to support this discussion. Method: A descriptive study using mixed-methods convergent design was used to obtain responses from a sample of 30 long-term care nurses. An online survey included questions to obtain quantitative data and open-ended questions for short responses. Results from both sets of data were brought together and compared during the analysis phase. Results: The findings of this study highlight the personal factors of the nurse, the characteristics of the surrogate decision maker, contextual factors, situational related inputs, and the support desired by long-term care nurses. Participants rated factors according to importance in their experiences of communicating with surrogate decision makers. Seven themes were inductively derived from the analysis: 1) selected or appointed as surrogate makes a difference, 2) strong trusting bond between nurse-resident and nurse-family, 3) being too close to see resident’s wishes, 4) interdisciplinary team agreement, 5) living will as a communication roadmap, 6) peaceful environment, and 7) the need to create emotional distance. Long-term care nurses also identified the types of support they seek or need to be effective in communicating with end-of-life care surrogate decision makers. Conclusion: As the numbers of the older population continue to increase, the demand for nurses to develop expertise in caring for dying residents and communicating with them, their family members, and surrogate decision makers will increase. Understanding their experiences and providing support to long-term care nurses may strengthen their capacity to communicate about death and dying and their delivery of quality end-of-life care to residents.

The purpose this study was to explore the relationship between counseling mental health practitioners’ attitudes toward euthanasia and their ethical decision making levels when confronted with clients facing end-of-life concerns. A review of literature indicated a series of complex ethical, moral, and societal issues surrounding clients’ right-to-die issues. Because of the lack of research in the counseling field and the growing prevalence of right-to-die issues with clients who have a diagnosis of a terminal illness, more research in the counseling field is needed (Hadjistavropoulos, 1996; Winograd, 2012). Participants for the present study were recruited from six state divisions of the American Counseling Association; Alabama, Louisiana, North Dakota, Maryland, Vermont, and Utah. Two multiple regressions were conducted in addition to one correlation and one MANOVA. One multiple regression was conducted using EDMS-R ans the dependent variable and one multiple regression was conducted using ATE overall score as the dependent variable. The Independent variables used were years in practice, gender, state, and religion. The dependent variables used were participant EDMS-R score and participant ATE score. Variables were chosen to examine variability accounted for in ATE and EDMS-R participant scores. Findings from this small study indicated that counselors’ years in practice, gender, state, and religion accounted for more of the variability in their beliefs about euthanasia (13.5) than their ethical decision making levels (2.7). Also, counselors’ religion had the greatest effect on participants’ ATE overall scores and on their EDMS-R P index scores. Counselors’ ATE overall scores as well as their both active and passive scores were all shown to be correlated to their P index scores with their ATE active scores exhibiting the strongest correlation and their ATE passive score exhibiting the weakest correlation. Future research suggestions include assessing counselors’ religion in more depth, and focusing on the other demographic variables in the study, as well as conducting an initial qualitative study to provide insight from individual participants as opposed to assessing a large group of participants.