There are an estimated 5 million family caregivers supporting persons suffering from advanced heart failure (AHF) which constitutes the final stage of cardiovascular disease and is the primary cause of death for 1 in 8 Americans. AHF caregivers are instrumental in monitoring symptoms, promoting adherence, communicating with healthcare providers and making treatment choices for their care recipients (CRs) at the end of life. What little is known about the AHF caregiver experience comes from surveys, instruments and structured interviews and tends to exclude caregivers of CRs with advanced disease. The purpose of this interpretive phenomenology was to elicit the meaning of caring for a spouse with AHF and is the first of its kind in the US. Seven older spouses caring for persons with NYHA class III-IV HF recruited by the Advance Practice RN of a large regional hospital participated in 3 reflective interviews over the course of 2 months. Grounded in the Philosophy of Ethics by Paul Ricoeur and using a method based on his Theory of Interpretation, their reflections revealed the essence of the caregiver experience as "being fearfully vigilant, at the mercy of the disease while worrying about that which remains unspoken". Separate inquiries invited participants to explore the meaning of symptom interpretation which was likened to "a walk in the fog on the rocky shore by a treacherous river"; and communication which illuminated caregivers' ethical intention in caring for themselves and their loved ones. The fourth and final research question explored caregivers' meaning making in the experience, symptom interpretation and communication over time which uncovered several missed opportunities for advance care planning. Findings support and add to recent models in palliative care, shared care and advance care planning in AHF. This study gives healthcare providers insight into the challenges to respect, self esteem and autonomy encountered by aging couples in the context of AHF. Participants identified personal learning needs related to being a caregiver, symptom interpretation, and managing clinical and emotional manifestations of AHF. Naming specific barriers in communication with their CRs as well as with healthcare providers they called for relationship counseling for the CG-CR dyad, and to be respected as part of the team by healthcare providers. Participants gave moving examples of how current models of care failed to meet their needs, with urgent implications for coordinated care by an interdisciplinary team of healthcare providers. This study identified the need for more phenomenological inquiry to understand (1) implications of CR's cognitive fluctuations on decision making for preferences of care, (2) CRs' personality changes attributed to an awareness of death being near, (3) the need to retain a purpose in living both as individuals and as a couple, and (4) how CRs reconcile daily choices in illness management and adherence with preferences for care at the end of life.

京都大学 / 新制・課程博士 / 博士(医学) / 甲第23465号 / 医博第4772号 / 新制||医||1053(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 近藤 尚己, 教授 山本 洋介, 教授 松村 由美 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM

Bakground: Palliative care is based on the concept that a person at the end of life should still have agood life quality. The care received should also be based on the sick persons wishes and preferences. During palliative care the person cared for should be able to chose where they want to receive the care and a lot of people want to die at home. Aim: The aim of this study is to describe the experiences of people receiving palliative care at home. Method: This is a literature study with a qualitative approach that follows Polit and Beck's nine-stepmodel. Ten articles were identified and analyzed using a thematic analysis. Results: The results show two themes and four subtemes: Communication with subtemes Accessibility and Partnership. Well-being with subtemes Comprehensive care and Security & Insecurity. Conclusions: People who receive palliative care at home are in need of feeling safe and being seen asa whole person in nursing. It is important for the sick people to have a good relationship with their caregivers based on partnership and accessibility. Home care should be well-planned and organizedas poor communication can lead to insecure care. / Bakgrund: Den palliativa vården grundar sig på att personen som är i livets slutskede ska ha en god livskvalitet under sin sista tid i livet. Vården ska även anpassas utifrån den döende personens önskan och preferenser. När en person vårdas palliativt ska hen ha möjlighet att välja var vården ska utföras. En stor del människor som vårdas i livets slutskede vill vårdas och dö i sitt hem. Syfte: Syftet med denna studie är att beskriva erfarenheter från personer av palliativa vården i hemmet. Metod: En litteraturstudie med kvalitativ ansats. Studien följde Polit och Becks niostegsmodel förlitteraturstudier. Tio artiklar identifierades och analyserades med tematisk analys. Resultat: Resultat redovisar i två teman och fyra sudteman: kommunikation med subteman vårdpersonalens tillgänglighet och partnerskap. Välbefinnande med subteman helhetsvård och trygghet & otrygghet. Slutsats: Personer som får palliativ vård hemma är i behov av att känna sig trygga och bli sedda somen hel människa vid omvårdnad. Det är viktigt för de sjuka personerna att ha en god relation med sinavårdgivare som baseras på partnerskap och tillgänglighet. Vården i hemmet bör vara välplanerad och organiserad då dålig kommunikation kan leda till en osäker för vård.

Introduction: Rural emergency nurses face unique obstacles to providing quality end-of-life (EOL) care. Stories provided by emergency nurses embody their most difficult EOL care obstacles. Methods: A questionnaire was sent to 53 rural hospitals. Respondents were asked to share stories that epitomized the obstacles faced while providing EOL care in the rural emergency setting. Results: The lack of an ideal death (nurse personally knows the patient, issues with family members, and unknown patient wishes) was the top obstacle. Other reported obstacles were insufficient ED staff and power struggles between nurses and physicians. Discussion: Rural emergency nurses often provide EOL care to friends and family members, while their urban counterparts are likely to transfer care to nurses with no relation to the dying patient. Not only does caring for patients, that the nurse knows or is related to, cause great distress to rural emergency nurses, this unfortunately common situation may also prevent patients from receiving the highest quality of EOL care. Conclusion: Emergency nurses often face obstacles that hinder their ability to provide high quality EOL care to patients. These obstacles are compounded by a unique set of challenges faced by nurses working in rural emergency departments. Stories from rural emergency nurses revealed that being unable to provide optimal care at the EOL, having difficulties with family members, or not knowing the patient's wishes for EOL care were the most common obstacles. Additional obstacles included stories about the impact of low or unavailable staff and feeling powerless in some EOL situations.

This review article addresses end-of-life care issues characterizing human immunodeficiency virus progression by delineating associated stages of medical and nursing care. The initial progression from primary medical and nursing care aimed at functional cure to palliative care is discussed. This transition is considered in accord with the major symptoms experienced, including fatigue, pain, insomnia; decreased libido, hypogonadism, memory, and concentration; depression; and distorted body image. From the stage of palliative care, progression is delineated onward through the stages of hospice care, death and dying, and the subsequent bereavement process.

Healthcare teams can implement care initiatives to promote a positive dying experience. However, there is a lack of knowledge related to how best to care for dying patients. Nurses do not receive extensive training in nursing school to care for patients at the end of life, yet most, at some point in their careers, experience the provision of this type of care. It is important to ensure that nurses caring for dying patients have been educated about end-of-life care. The purpose of the quality improvement project was to address the lack of end-of-life care education among critical care nurses in an acute care hospital by implementing and testing the effectiveness of an end-of-life care educational program. Kolcaba's theory of comfort was chosen as the theoretical framework for the project. Registered nurses (n = 34) employed on a critical care unit participated in the one-group pretest/posttest design project. The nurses completed the Healthstream online end-of-life care education, and knowledge improvement was determined through comparison of pretest and posttest scores. Descriptive tests were completed to determine the mean score. The descriptive data analysis and tests showed that participants' level of end-of-life care knowledge improved after they completed the formalized educational program. Participants' scores increased from pretest (68% to 100% correct answers) to posttest (93% to 100% correct answers). The primary populations benefiting from the project are nurses, dying patients, and family members of dying patients. The social change implication of the findings is that if nurses receive education on end-of-life nursing, increased knowledge of appropriate care for dying patients is expected.

This dissertation addresses gaps in the interaction between End-of-Life (EoL) product acquisition systems and disassembly sequencing. The research focuses on two remanufacturing research problems; 1) modeling uncertain EoL product quality, quantity, and timing in regards to EoL product acquisition and disassembly sequencing and 2) designing EoL product acquisition schemes considering EoL product uncertainty. The main research objectives within these areas are; analyzing, predicting, and controlling EoL product uncertainty, and incorporating EoL product uncertainty into operational and strategic level decisions. This research addresses these objectives by researching a methodology to determine optimal or near-optimal partial disassembly sequences using infeasible sequences while considering EoL product quality uncertainty. Consumer incentives are integrated into the methodology to study the effect of EoL product take-back incentives, but it also allows for the study of EoL product quantity uncertainty. EoL product age distributions are key to integrating the disassembly sequence method with EoL product acquisition management, acting both as an indicator of quality and as a basis for determining return quantity when considering incentives. At a broader level, this research makes it possible to study the impact of EoL product quality, and to an extent quantity, uncertainty resulting from strategic level (acquisition scheme) decisions, on operational (disassembly sequencing) decisions. This research is motivated by the rising importance of value recovery and sustainability to manufacturers. Extended Producer Responsibility (EPR) and Product Stewardship (PS) policies are, globally, changing the way products are treated during their use-life and EoL. Each new policy places a greater responsibility on consumers and manufacturers to address the EoL of a product. Manufacturers, in particular, may have to fulfill these obligations by such means as contracting 3rd parties for EoL recovery or performing recovery in-house. The significance of this research is linked to the growing presence of remanufacturing and recovery in the US and global economy, either via profitable ventures or environmental regulations. Remanufacturing, in particular, was surveyed by the US International Trade Commission in 2011-2012, where it was determined that remanufacturing grew by 15% to $43 billion, supported 180,000 full-time jobs from 2009-2011, and is continuing to grow. A partial disassembly sequence, multi-objective genetic algorithm (GA) is used a solution procedure to address the problem of determining the optimal or near-optimal partial disassembly sequence considering a continuous age distribution of EoL or available consumer products, with and without a consumer take-back incentive. The multi-objective GA, novel to the presented approach, relies on infeasible sequences to converge to optimal or near-optimal disassembly sequences. It is verified with a discrete economic and environmental impact case prior to incorporating EoL product age distributions. Considering the age distribution of acquired EoL products allows for decisions to be made based not only on expected profit, but also on profit variance and profit probability per EoL product, which was not observed in previous literature. As such, the research presented here within provides three contributions to disassembly and EoL product acquisition research: 1) integrating EoL product age distributions into partial disassembly sequencing objective functions, 2) accounting for partial disassembly sequence expected profit, profit variation, and profit probability as compared to disassembly sequencing methods that have, historically, only considered expected profit, and 3) studying the impact of EoL product age distributions and consumer take-back incentives on optimal or near-optimal partial disassembly sequences. Overall, this doctoral research contributes to the body of knowledge in value recovery, reverse logistics, and disassembly research fields, and is intended to be used, in the future, to develop and design efficient EoL product acquisition systems and disassembly operations. / Ph. D.

Indiana University-Purdue University Indianapolis (IUPUI) / Many advanced cancer patients receive intensive treatment near the end of life (EOL). Intensive treatment near the EOL is often associated with worse outcomes, such as worse quality of life (QOL), greater distress in patients and caregivers, and higher health care costs. For cancers typically unresponsive to chemotherapy such as lung and gastro-intestinal (GI), the side effects of intensive treatment are endured without increasing survival time. To date, research on EOL care in advanced cancer patients has focused on patient prognostic understanding, physician communication, and patient distress. These factors do not fully explain why many patients receive intensive treatment near the EOL when there is no hope for cure. Hence, there is a need to better understand the factors that influence EOL treatment in order to improve patient and caregiver outcomes. Self-Regulation Theory (SRT) provides a framework that may help explain motivations and care decisions in this population. This study had two aims: 1) to examine the associations between EOL clinical encounters (i.e., EOL conversations with a physician) and treatment intensity in advanced cancer patients near the EOL; and 2) to examine the associations between important SRT constructs (i.e., goal flexibility, hope, and optimism) and treatment intensity in advanced cancer patients near the EOL. A sample of 76 advanced lung and GI cancer patients was recruited from Indiana University Simon Cancer Center. Hope predicted receiving chemotherapy closer to death (β = -.41, t (66) = -2.31, p = .025), indicating more intensive treatment near EOL. Other predictor variables were not significantly associated with intensive treatment. Implications and methodological limitations are discussed.

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