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.

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.

Thesis advisor: Pamela J. Grace / As supported by extensive literature, nurses have a role to play in helping patients and families in getting their needs understood and met. This ethical responsibility includes decisions made by nurses in the context of end-of-life (EOL) care. Ethical decision-making is known to be influenced by nurses' understanding of their professional accountability and several cognitive processes that underlie moral action. Rest (1986) theorized these processes as: moral sensitivity, judgment, moral motivation, and moral character. However, few instruments have been developed to understand nurses' ethical decision-making during EOL care, and most have focused on a single dimension rather than on the multi-dimensional process. The purposes of this methodological study were: 1) to develop a scale with content domains and items capable of describing Korean nurses' ethical decision-making at EOL and 2) to evaluate the scale's psychometric properties using Korean nurses (N = 230). The criteria for participation were: Korean nurses having more than 2 years of clinical experience in the types of units where most Korean patients spend the end of their lives: critical care, general medical-surgical, and hospice units. The process followed two steps. Phase I consisted of the development of domains and items. Three domains were identified through themes derived from an integrated review of relevant literature and the findings from a preliminary qualitative study involving experts in EOL care in Korea. 95 items were generated within these three domains. Content validation was completed by a panel of six nursing ethics experts, three in Korea and three in the U.S. Next, a pilot study to test readability was conducted using three Korean nurses. During Phase II, 67 items of the NEDM-EOLCS version 3.0 were tested. After item analysis and factor analysis, a 55-item final version of the NEDM-EOLCS was established. The total scale and three subscales reported good reliability and validity. The three subscales were labeled: "perceived professional accountability," "moral reasoning and moral agency," and "moral practice at the EOL." / Thesis (PhD) — Boston College, 2009. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Bakgrund: Av Sveriges befolkning är ungefär 80 % i ett behov av palliativ vård. Majoriteten av dessa beskrivs vara äldre med en långdragen sjukdomsprocess. I ett palliativt vårdande ska sjuksköterskorna utgå från fyra hörnstenar, vilka Socialstyrelsen utvecklat från WHO:s riktlinjer. Enligt dessa ingår det i sjuksköterskans roll att lindra besvärande symtom, arbeta utifrån ett tvärprofessionellt teamarbete, ha goda kommunikationer och relationer samt att ge stöd till närstående. Syfte: Att belysa erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Metod: En litteraturöversikt gjordes där tio kvalitativa och kvantitativa artiklar användes till resultatet som belyser erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Sökningarna gjordes i databaserna, CINAHL Complete, PubMed och Medline with Fulltext. Artiklarna analyserades med hjälp av färgkodning. Resultatet: Resultatet visade på sjuksköterskors erfarenheter av att agera patientens advokat, vikten av att arbeta i ett vårdteam, sjuksköterskornas erfarenheter av att vara utbildad och föra sin kunskap vidare samt sjuksköterskornas erfarenhet att vilja främja hälsa. Diskussion: Metoddiskussionen belyser tillvägagångssättet, svagheter och styrkor. Resultatdiskussionen lyfts utifrån Watsons caritasprocesser som stärker det sjuksköterskorna återger, där relationen är en nyckelkomponent i vårdandet samt hur brister i kommunikationen kan förstås. Det framgick att sjuksköterskor hade olika erfarenheter av vård i livets slutskede och att de mer erfarna var de som kände sig tryggast. Ur detta ges egna reflektioner av det ideala vårdandet enligt Watson, och hur det kan användas i praktiken av sjuksköterskor.

The growing older adult population, their age-related morbidities, and lifelimiting chronic illnesses increase the demand for quality yet cost-effective end of life (EOL) care. Losing a loved one creates emotional turmoil, heightened uneasiness, and EOL uncertainties for family members. Understanding the complex needs of family members and supportive actions deemed most significant to them can guide nurses to enhance EOL care, encouraging palliation and peaceful death experiences. This study used a qualitative descriptive exploratory design guided by story theory methodology to explore the dimensions of the health challenge of losing a loved one who had been in an acute care setting during the last three months of life, the approaches used to resolve this health challenge, and turning points that prompted decisions about a loved one’s care with 15 older adults residing in a Continuing Care Retirement Community (CCRC) in Southeast Florida. Theoretical grounding for this study was Watson’s (1988, 2002) theory of human caring and Smith and Liehr’s (2014) story theory. Older adults’ stories were analyzed through theory-guided content analysis. Themes that describe the health challenge include moving from painful holding on to poignant letting go, uneasiness that permeates everyday living and precious memories, patterns of disconnect that breed discontent, and pervasive ambiguity that permeates perspectives about remaining time. Approaches to resolve this challenge include active engagement enabling exceptional care for loved ones, appreciating the rhythmic flow of everyday connecting and separating to get by, and embracing reality as situated in one’s lifelong journey. Failure to establish normalcy, coming to grips with abrupt health decline/demise, and recognition – there’s nothing more to do – were the turning points identified by CCRC residents. Older adults’ vivid recollections of losing a loved one and willingness to share EOL concerns as well as recommendations regarding support of family members who are facing this challenge serve as invaluable guidance for improving EOL care for dying patients and their family members. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2016. / FAU Electronic Theses and Dissertations Collection

This thesis is a critical assessment of Edith Stein’s critique of Martin Heidegger, which is focused on the definition of the human being. I explore Stein’s ontology of the person from the point of view of her examination of Heidegger’s existential ‘Dasein’ and the way she reaches a very different answer to the same question that Heidegger posed, the question of the meaning of being. To this end I examine key passages of Stein’s most important ontological work Finite and Eternal Being - An Attempt at an Ascent to the Meaning of Being along with its appendix Martin Heidegger’s Philosophy of Existence, in which she directly discussed Heidegger’s philosophy, focusing on his work Being and Time. In the first part of this research I draw a historico-philosophical overview of the academic and political background of the period between World War I and World War II in Germany in order to position both authors in context and investigate their philosophical influences as well as their ambiguous relationship with the phenomenological school. The central part is dedicated to Stein’s analysis of Heidegger’s Dasein: I compare and explain both authors’ approaches to the philosophical understanding of human being, person, life, soul and death. This investigation was carried out with both a hermeneutical and terminological analysis. I draw upon the results to demonstrate how Stein’s phenomenology of life experiences enlarges the borders of human finitude to embrace the possibility of its ontological horizon while Heidegger restricts and concentrates the entire ontological question on the Dasein, its existence and ultimately its finitude. My findings provide an assessment of the limits as well as the strengths of Stein’s critique. I demonstrate that Stein attempted to build a bridge between classical ontology and phenomenology, while Heidegger’s distance from the philosophical tradition was rooted in his methodological refusal. I also show how their opposite methods and findings present unexpected similarities and how Stein’s philosophical significance should be reconsidered in the light of her work. This research leads to various implications for today’s philosophical debate and makes it possible to view Stein’s theory of being in a wider ethical context, as presented in the final part of this work. I argue that Heidegger depersonalises and violates traditional ontology to explain the human being only in terms of pure existence, while Stein’s portrait of the ‘fullness’ and the meaning of life contributes to the discussion between philosophy and religion. In the final section of this work I show how some of the elements emerging from Stein’s critique of Heidegger can cast a light on the current ethical discussion about how death is understood and experienced socially, and how best to care for the dying.

AIM - To explore the perspectives of service users and professional staff towards service user involvement within the context of a changing cultural environment at a UK hospice. METHOD - Case study and thematic analysis including interviews with 16 staff including the CEO and 6 service users at a UK hospice. FINDINGS - Three overarching themes were identified: involvement and disempowerment in decision-making; belonging and alienation in a period of organisational change; struggle to maintain wellbeing and identity in a changing culture. A key finding is that service users receiving care from the hospice wanted their voices to be heard, valued and respected for their personal care and issues affecting the hospice. Service users did not consider it a burden to be asked for their views. They felt disempowered by a consultation process about organisational changes that appeared not to take their views on board. There is a need to consider whether a reliance on surveys for involving service users is sufficient or can become tokenistic. External social-political-economic pressures plus increasing privatisation of public services could influence the way that hospices operate in future. This could involve moving from a sanctuary to a business culture and potentially towards managerialism by adopting a regulatory rather than rights-based approach with an emphasis on increasing reach, measuring numbers and hitting targets. Service users being viewed as consumers with a focus on reablement/rehabilitation activities and less on psychosocial support could also serve to push hospices to start behaving more like hospitals. CONCLUSION - More qualitative research is needed to ensure the voices of service users living with a life-limiting illness are heard. The contributions they make towards co-production of services and research should also be heard and influence practice and policy. Service users should also be more involved in education and training of staff.

BACKGROUND: Nurses working in intensive care units (ICUs) frequently care for patients and their families at the end-of-life (EOL). Providing high quality EOL care is important for both patients and families, yet ICU nurses face many obstacles that hinder EOL care. Researchers have identified various ICU nurse-perceived obstacles, but no studies have been found addressing the progress that has been made over the last 17 years.OBJECTIVE: To determine the most common and current obstacles in EOL care as perceived by ICU nurses and then to evaluate whether or not meaningful changes have occurred since data were first gathered in 1998.METHODS: A quantitative-qualitative mixed methods design was used. A random, geographically dispersed sample of 2,000 members of the American Association of Critical-Care Nurses was surveyed.RESULTS: Five obstacle items increased in mean score and rank as compared to 1999 data including: (1) family not understanding what the phrase "life-saving measures" really means; (2) providing life-saving measures at families' requests despite patient's advance directive listing no such care; (3) family not accepting patient's poor prognosis; (4) family members fighting about use of life support; and, (5) not enough time to provide EOL care because the nurse is consumed with life-saving measures attempting to save the patient's life. Five obstacle items decreased in mean score and rank compared to 1999 data including (1) physicians differing in opinion about care of the patient; (2) family and friends who continually call the nurse rather than calling the designated family member; (3) physicians who are evasive and avoid families; (4) nurses having to deal with angry families; and, (5) nurses not knowing their patient's wishes regarding continuing with tests and treatments.CONCLUSIONS: Obstacles in EOL care, as perceived by critical care nurses, still exist. Family-related obstacles have increased over time and may not be easily overcome as each family, dealing with a dying family member in an ICU, likely has never experienced a similar situation. Based on the current top five obstacles, recommendations for possible areas of focus may include (1) improved nursing assessment regarding the health literacy of families followed with directed, appropriate, and specific EOL information, (2) improved care coordination between physicians and other health care providers to facilitate sharing care plans, (3) advanced directives that are followed as written by patients, (4) designated family contact communicating with family and friends regarding patient information, and, finally, (5) earlier, transparent discussions of patient prognoses as disease processes advance and patient conditions deteriorate.

Background: Around 100 000 people die in Sweden every day and most of them need palliative care. Palliative care means relieving relief and promoting good quality of life for dying persons. Palliative care is included in the education programme for nurses, although it varies during the education. The aim:To describe nurses experience of care in palliative care with focus on the end of life care. Method:A literature study based on eleven scientific articles. Main Result:Showed that care for dying patients are sensitive and emotional for nurses and this can affect palliative care. The experiences showed that nurses felt unprepared to meet dying patients, this was linked to deficiencies such as knowledge, time, experience and support. The result showed that communication and close relationships are basis for good palliative care and also the promotion of good quality of life for dying patients at the end of their lives. Conclusion: Palliative care is complex. In order for nurses to be able to offer good palliative care for the dying patients, better educations and strategies are needed to deal with difficult situations and build a stronger relationship with the patients and their relatives. Furthermore, lack of time and knowledge affects the care and nursing profession. Developing the experiences as well as constant reflection on nurse's work role can help to understand the care of dying patients better. / Bakgrund: Varje år avlider cirka 100 000 människor i Sverige. De flesta behöver palliativ vård. Palliativ vård innebär att lindra lidandet och främja god livskvalitet för döende personer. Palliativ vård ingår i utbildningen för sjuksköterskor, men innehållet varierar under utbildningens gång. Syfte: Att beskriva sjuksköterskors upplevelse av vårdandet inom palliativ vård med fokus på livets slutskede. Metod: En litteraturstudie baserad på elva vetenskapliga artiklar. Huvudresultat: Visade att vårda döende patienter är känslomässigt för sjuksköterskor och detta kan påverka den palliativa vården. Upplevelserna visade att sjuksköterskor kände sig oförberedda att möta döende patienter, detta förknippades till brister såsom kunskap, tid, erfarenheter samt stöd. Resultatet visade att kommunikation och nära relation är förutsättningar för en god palliativ vård och främjar god livskvalitet för döende patienter i livets slutskede. Slutsats: Palliativ vård är komplex. För att sjuksköterskor ska kunna erbjuda en god palliativ vård till döende patienter behöver de mer utbildning och strategier för att hantera svåra situationer samt skapa en bättre relation med patienterna och anhöriga. Brist på tid och kunskap påverkar vård och sjuksköterskors profession. Utveckling av upplevelserna samt ständig reflektion över sjuksköterskornas arbetsroll kan vara till hjälp för en bättre förståelse av att vårda döende patienter.

HIV-positive children in sub-Saharan Africa have numerous challenges to overcome. These challenges increase psychosocial stress as well as symptom burden including fatigue, weight loss, pain, and mental changes. The symptoms may persist even after initiation of antiretroviral therapy, so such children need additional care. Palliative care lays emphasis on holistic patient-centered care, including physical, psychological, social, and spiritual symptoms, alongside antiretroviral therapy. There is limited data on the impact of integrating palliative care with standard HIV care and treatment in children. The purpose of this study was to fill the gap in the literature by investigating the impact of palliative care on health status in HIV-positive children on antiretroviral therapy. The theoretical framework was based on the humanistic nursing theory. Using the Mann Whitney U and logistic regression tests, the health-related quality of life of 97 children who received palliative care in addition to standard HIV care was compared to 180 HIV-positive children who received standard HIV care only through chart reviews. According to study results, children receiving palliative care alongside antiretroviral therapy have better physical and psychosocial health compared to children receiving only antiretroviral therapy. Increasing age was a contributing factor to better psychosocial and physical health in patients receiving palliative care. Emotional, social, and school functioning are important factors that determine treatment outcomes in children on antiretroviral therapy, and addressing those factors through palliative care will create a positive social change by improving treatment outcomes, quality of life, and longevity.