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.

Depuis ces trente dernières années, la qualité de vie tend à devenir un critère d’évaluation des thérapeutiques incontournable que cela soit dans un contexte de recherche clinique ou dans un contexte d’individualisation de la prise en charge médicale. L’évaluation de la qualité de vie permet de tenir compte du ressenti du patient quant à sa prise en charge que cela soit sur des aspects purement physiques ou symptomatiques que sur des aspects psychologiques, sociaux ou environnementaux. Dans un contexte de fin de vie où les possibilités thérapeutiques sont limitées et où les symptômes peuvent être extrêmement invalidants, l’évaluation de la qualité de vie s’impose d’évidence.Afin d’appréhender le plus justement possible les particularités de la méthodologie permettant l’évaluation de la qualité de vie des patients en fin de vie atteints d’un cancer, il semblait important, dans un premier temps, de présenter le concept de « qualité de vie relative à la santé », afin de définir les éléments clés quant à sa compréhension et à son utilisation (définition, conceptualisation, instruments de mesures, analyse). La période de la fin de la vie étant une étape particulière de la vie d’un patient, nous avons dans un second temps, cherché à définir le cadre temporel de cette période et définir ainsi, plus précisément, les caractéristiques de la population étudiée. Il est en effet essentiel de tenir compte des spécificités de ces patients pour évaluer, le mieux possible, leur qualité de vie.Les articles relatifs à ce travail de recherche sont présentés dans une seconde partie et discutés ensuite.Ce travail souligne la nécessité de développer des instruments permettant l’évaluation de la qualité de vie des patients en fin de vie atteints d’un cancer dans le respect de leur sensibilité et de la méthodologie essentielle à la validation / In the last thirty years, health related quality of life has become an unavoidable endpoint in a clinical research context and in a therapeutic individualization context. Quality of life evaluation allows us to consider patient health care perceptions; in respect to physical or symptomatic domains or in respect to psychological, social or environmental domains. In a specific end of life context, where treatment opportunities are limited and adverse events could be extremely disabling, the evaluation of the quality of life is obvious. To distinguish more precisely the methodological subtleties of the evaluation of cancer patient end of life quality of life, it seemed important, firstly, to present the concept of health related quality of life, in order to define the main elements concerning both understanding and use of quality of life assessment (definition, conceptualization, tools, measuring instruments, analysis). Because the end of life is a specific time, we sought to define secondly, the time frame of this period, and therefore defined more precisely patient characteristics. It was essential to take into account the specificity of these patients to best evaluate their quality of life.Research related articles are presented in a second part of this work and discussed there afterThis work underlines the necessity to develop measuring instruments to permit quality of life evaluation in a context of end of life with respecting both patient needs and methodological requirements

Background: A growing number of older people, mainly women, live in single households. They represent avulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end oflife. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research Little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay athome even at the end of life. This paper aims to introduce the research protocol. Methods: We plan to apply a qualitative longitudinal study to better understand how older people living aloneand their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We willconduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 completedata sets and up to 200 personal interviews were planned. These will be complemented by regular telephonecontacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructingcase trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshopsshall assure quality and support knowledge transfer. Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to itstopic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative Research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will beenhanced, which is of major relevance for future care planning. With investment in additional reflexivity andcommunication procedures innovative results and robust knowledge are expected outcomes.

Med palliativ vård menas att inriktningen på vården är att lindra symptomen, möjligheten att bota sjukdomen finns inte längre. Läkaren ska då försäkra sig om att livsuppehållande behandlingar inte längre kan påverka sjukdomsförloppet, ta största möjliga hänsyn till patientens önskemål och ta det avgörande beslutet att avsluta eller avbryta en livsuppehållande behandling. Palliativ vård är på många områden numera utbyggd till avancerade hemsjukvårdsteam. Tidigare studier har i huvudsak fokuserat på anhöriga eller vårdpersonal och då särskilt sjuksköterskans upplevelser av att vårda palliativa patienter. Därför är det viktigt att tydliggöra patientperspektivet. Syftet med denna litteraturstudie var att beskriva befintlig forskning om hur patienter inom palliativ vård upplever den sista tiden i livet. Metoden som använts är litteraturstudie och resultatet är funnit i 10 vetenskapliga artiklar. Resultatet redovisas med hjälp av fyra kategorier; Hopp och hopplöshet, Mening och maktlöshet, Tillgänglighet och ensamhet samt Acceptans. Slutsatsen är att den som är allvarligt sjuk och står inför döden bör mötas och behandlas av palliativ vård som grundas i hopp, mening, tillgänglighet och acceptans. För att förbättra den sista tiden i livet för patienten inom palliativ vård när det gäller bevarad värdighet finns det, med stöd i studiens resultat, specifika aspekter att beakta. Patienten bör delta i sin vård så långt det är möjligt; Hopp är inte alltid kopplat till bot; Vårdarna bör underlätta sociala kontakter; Vårdarna bör vara tillgängliga, även när det inte finns något att säga; Allvarlig information bör ges stegvis; och Teamarbete med flera olika professioner.

O presente trabalho teve como objetivo compreender a vivência do familiar cuidador durante e após cuidar de um ente querido em seu processo de fim de vida e morte. Com os crescentes avanços científicos e tecnológicos, a expectativa de vida da população mundial tem aumentado, além disso, pessoas de quaisquer faixas etárias têm sobrevivido por mais tempo a doenças graves e/ou acidentes. Essas mudanças significativas ocorridas na população têm aumentado a demanda por cuidados, que têm sido realizados, em sua maior parte, por familiares mais próximos. Dessa forma, o objetivo desta pesquisa foi conhecer melhor esse familiar cuidador; os impactos para ele na experiência de cuidar, o seu papel no processo, e como lida com as idiossincrasias dessa intensa vivência. O trabalho foi fundamentado no método fenomenológico de pesquisa de Amedeo Giorgi. Foram realizadas entrevistas individuais abertas com os colaboradores, que partiram da pergunta: Como foi para você ter acompanhado e cuidado de seu ente querido em seu processo de fim de vida? E como foi ter vivido a perda dele? Que foram acompanhadas de acordo com o que os familiares consideravam relevante. Participaram deste estudo seis adultos, três mulheres e três homens, com idades entre 26 e 63 anos, cuidadores de familiares acometidos por doenças potencialmente fatais. Os colaboradores foram localizados pela divulgação do trabalho entre pessoas conhecidas e escolheram participar voluntariamente. A compreensão das narrativas mostrou que: 1) Quando uma pessoa com doença potencialmente fatal é diagnosticada e passa a ser tratada/cuidada, é fundamental englobar nesses cuidados também sua família, em especial o membro cuidador, pois esse é fortemente afetado pela doença e seus desdobramentos, vivenciando impactos e rupturas, acompanhados de muito sofrimento e angústia; 2) A relação entre a pessoa com a doença/familiar cuidador e os profissionais de saúde mostrou-se importante, influenciando todo o processo de fim de vida e morte. Porém, os profissionais também apresentam suas dificuldades em lidar com o sofrimento e a finitude humanas. Assim, é imprescindível apontar a necessidade de também receberem cuidados em meio à sua prática cotidiana; 3) Destacou-se ainda a importância dos cuidados nãofarmacológicos/ não-técnicos no cuidado a cuidadores familiares e cuidadores profissionais. É necessário recuperar modos de escuta e acolhimento, em um movimento de se desvincular da grande dependência do tecnicismo, abrindo espaço para as subjetividades; 4) E ainda, é preciso enfatizar a necessidade do próprio cuidador, em sua intensa vivência, poder se ver/se perceber em todo esse processo. Perceber-se enquanto ser que sofre, angustia-se perante a dor e a morte. É importante que acolha a própria dor e angústia e, assim, possa crescer/projetar-se para as inúmeras perspectivas que o poder-ser da existência humana possibilita. Tendo como base os achados, ao final, há a apresentação de palavras diretamente escritas a profissionais e cuidadores. Dessa forma, este trabalho, enquanto amplia as compreensões a respeito da intensa vivência que é o cuidar de um ente querido/paciente em seus últimos momentos de vida, pode auxiliar familiares cuidadores e profissionais de saúde em sua profunda jornada / This study aimed to understand the experiences of family caregivers during and after caring for a loved one in the process of end of life and death. With important progress in scientific and technological areas, life expectancy of the world population has increased. Moreover, people of any age have survived longer with serious illnesses and/or accidents. These significant changes in population has increased the demand for care, which have been conducted, mostly by close relatives. Then, the aim of this research was learning more about this caregiver; understanding the impacts to him in care experience, their role in the process and knowing better how he deals with the idiosyncrasies of this intense experience. This work is based on the phenomenological research method developed by Amedeo Giorgi. The interviews had a non-directive approach and were started with the question: How did you experienced the taking care of your loved one in an end of life process? And how did having lived his/her loss? They were conducted taking in account what the participants considered as relevant issues. Six adults participated, three men and three women, ranging from 26 to 63 years of age; they were the main caregivers of relatives with potentially fatal diseases. The collaborators had knowledge about the study through divulgation for known people and voluntarily wished to cooperate. The comprehensive analysis of the narratives showed that: 1) It is fundamental to include family, especially the caregiver member, in the care when a person with advanced disease is diagnosed and is treated/cared. It because the caregiver is strongly affected by the disease and its consequences, experiencing impacts and disruptions, accompanied by much suffering and anguish; 2) The relationship between the person with the disease/caregivers and health professionals proved important, because it influences the whole end of life process and death. However, professionals also have their difficulties in dealing with suffering and human finitude. Therefore, it is essential to foreground the need to also receive care in their daily practice; 3) It was also highlighted the importance of nonpharmacological/ non-technical care in caring for family caregivers and professional caregivers. It is necessary to recover ways of listening and acceptance, in a movement to avoid the heavy reliance on technicality and to make room for subjectivities; 4) And, it is necessary to emphasize the need for the caregiver to see and perceive himself/herself throughout this process. Perceive himself as being who suffers and anguishes in front of pain and death. It is important to embraces his/her pain and anguish and, then, can grow/project himself to the numerous perspectives that the can-be human existence allows. At the end, based on findings, there is a presentation of words written directly to professionals and caregivers. Thus, this paper, while expanding understandings about the intense experience that is caring for a loved one/patient in the last moments of life, can help family caregivers and health professionals in your deep journey

Thesis advisor: Pamela J. Grace / Significance/Background: Surrogate decision-makers (SDMs) take part in 1.5 million end-of-life (EOL) decisions per year. Most find the role burdensome, often do not make decisions concordant with patients' wishes, and many suffer negative psychological aftereffects. Specific Aims: 1) Identify and describe the psychological processes of recent SDMs for adults at EOL in the intensive care unit (ICU) and 2) develop a theoretical model of SDMs' psychological processes. Methods/Analysis: Descriptive, multiple case study research design using a cognitive task analysis (CTA) interviewing approach. Participants completed an in-depth semi-structured CTA interview and a demographic form. Verbatim transcribed interviews were encoded and analyzed until theoretical saturation was met. Results: Nineteen SDMs (female=11) with a mean age of 59 years (± 11) who made decisions for patients (mean age, 67±13 years) who died in the ICU completed interviews. Data analysis yielded 27 psychological processes representing the hypothesized theoretical links amongst 20 individual psychological concepts. The PREDICAMENTS model (Psychology, Reasoning, and Ethics Demonstrated In Choices about the Acceptability of Medical Treatments and Patient Conditions Encountered in Life Threatening Situations) of surrogate decision-making was assembled from these psychological processes and concepts. The model depicts a complex web of psychological processes wherein SDMs ultimately express acceptance or rejection of medical treatments and/or the patient's physical condition based on their perception of the acceptability (or lack thereof) of medical treatments and/or the patient's physical condition. Conclusions: The PREDICAMENTS model offers an initial picture of the underlying psychological processes operating in SDMs decision-making. Implications for Practice and Research: The PREDICAMENTS model can be used to assess and understand SDMs' thought processes, emotions, and ethical concerns. Further research is needed to test and corroborate constructs and linkages in this model with the aim of developing decision support interventions. Ethicists need to discuss the implications of this descriptive theoretical model for the normative ethical standards expected of SDMs. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.