Meeting the heath care needs of patients is becoming more complex as individuals are living longer and often with multiple chronic health conditions. In Canada, the majority of patients will die in hospitals (Statistics Canada, 2009), many on medical units. Studies of hospital care have shown that end-of-life care (EOLC) could be improved. Qualitative nursing research studies on EOLC in hospital medical units have been few. More needs to be known about nurses’ experience of providing EOLC within the medical unit environment. The purpose of this study was to seek to understand the lived experience of nurses on a medical unit providing EOLC to patients. Interpretive phenomenology using van Manen’s (1990) approach guided the methodology and analysis of the findings. Face to face interviews with 10 nurses on two hospital medical units were audio-recorded, transcribed and analyzed. The underlying essence of these nurses’ experience was that of “battling a tangled web”. Battling a tangled web represented the nurses’ struggles in attempting to provide EOLC in an environment which was not always conducive to it. Seven themes were generated from the analysis of the data: caring in complexity, caught in a tangled web, bearing witness to suffering, weaving a way to get there: struggling through the process, creating comfort for the patient, working through the dying process with the family, and finding a way through the web. These findings add to our growing knowledge of nurses’ roles and actions as part of EOLC. It also highlights nurses’ perceived facilitators and barriers to EOLC within the medical environment.

Background: Advance care planning (ACP) is a method used for patients to express in advance their preferences, beliefs and values for life-sustaining treatments at the end-of-life. With growing ethnocultural diversity in Canada, health care providers are managing an increasing number of diverse beliefs/values that are commonly associated with preferences for mechanical ventilation (MV) at the end-of-life. The aim of this project is to explore methods used by health care providers to set care plans for MV with ethnocultural populations. Methods: Qualitative analysis of semi-structured interviews with open-ended questions and two clinical vignette components was conducted with eight (8) health care providers who engage in ACP. Participants were recruited using a snowball-sampling approach from five acute-care hospitals within the Ottawa region. Results: Three major themes emerged from collected dataset: 1) Goals of care across illness trajectories, 2) Respecting beliefs, values, and wishes for care, and 3) Cross-cultural support in ACP. Using a value-based approach in ACP was described as an effective method for managing and interpreting diverse beliefs/values that impact decisions for MV. However, organizational, systemic, and personnel barriers that exist continue to hinder the provision of cross-cultural ACP across health settings. Contexte: La planification préalable des soins (PPS) est une méthode utilisée par les patients et les familles pour exprimer à l'avance leurs préférences liées aux traitements de prolongation de vie. En raison de la diversité ethnoculturelle croissante au Canada, les professionnels de la santé sont confrontés à des croyances et valeurs différentes, souvent associées à une préférence pour l’initiation et le maintien de la ventilation mécanique (VM) en fin de vie. L'objectif de ce projet consiste à explorer les stratégies utilisées par les professionnels de la santé lors des discussions associées à la VM auprès d'une clientèle multiculturelle. Méthodes: Huit (8) participants (médecins et infirmières) impliqués dans la PPS ont accepté de participer à une entrevue semi-structurée avec des questions ouvertes et deux scénarios cliniques. Les participants ont été recrutés à l'aide de la méthode d’échantillonnage par réseau (« boule de neige ») de cinq hôpitaux de la région d'Ottawa. Résultats: Trois grands thèmes ont émergé des entrevues: 1) les objectifs de soins à travers les trajectoires de la maladie, 2) le respect des croyances, valeurs et souhaits pour les soins, et 3) le soutien dans la PPS en contexte interculturel. Lors de la PPS, utiliser une approche basée sur les valeurs a été décrite comme une méthode efficace pour interpréter et prendre en compte les diverses croyances et valeurs qui ont une influence sur les décisions liées à la VM. Cependant, les barrières systémiques, organisationnelles et personnelles continuent d'entraver les services associés à la PPS en contexte interculturel dans les établissements de santé.

In the medical context, it is an accepted (yet controversial) fact that doctors may sometimes legitimately hasten death when providing palliative care to dying patients. Or even, in relation to treatment decisions leading to withdrawal or omission, some doctors may choose death over life for certain patients and yet we seldom hear of doctors in the dock for intentional killing. Where complicity in suicide is concerned, it seems that the compassionate lay person has little reason to be fearful of criminal reprisal. The question, however, of whether a person suspected of complicity in suicide, or a doctor suspected of intentionally causing the death of a patient, will be greeted by sympathy or condemnation is a legal minefield. A range of diverse legal, moral and circumstantial factors will determine firstly, whether one is prosecuted and secondly, whether one will be subject to juridical disapproval and possible incarceration. This thesis sets out to explore whether continued obfuscation, together with turning a blind eye to possible breaches of the law, is the best approach to the moral dilemma over what should be permitted in assisted dying and end-of-life law. This is not a rhetorical question with a trite answer. Such obfuscation may be viewed as having certain advantages. This thesis explores the legal and ethical issues in the context of recent developments, societal concerns and international influences in order to examine whether the current legal position in respect of homicide and complicity in suicide is tenable. The analysis invites the conclusion that whilst some legal change is both desirable and necessary, any legal reform should seek to facilitate a cautious compromise that reflects the legitimate concerns of those opposed to legal change.

Community health care aides form the largest group of home health care providers in Canada. There is an increasing trend in Canada towards more home deaths. Home Care and the health care aides that provide this care are an integral component of this movement. An Interpretive Descriptive study was undertaken to identify community health care aides’ experiences of support as they provide end-of-life care to those dying at home. Three themes emerged from the data: 1) Striving to provide the best care, 2) Connections, and 3) Loss. Findings suggest that relationships form an important part of the health care aides' work and are intertwined throughout all the themes identified in this study. Health care aides in the community often feel undervalued and unsupported by the larger health care team. Comparatively little research has been undertaken to examine the unique experiences of the community health care aides providing end-of life care, compared to research on the health care aides providing end-of-life care in the long-term care setting and to research on nurses providing end-of-life care in the community. Community health care aides have unique challenges and characteristics and this study was undertaken to address this gap. / Graduate

Background: Palliative care can be given to patients with progressive, incurable disease. In palliative care the patient is seen in a holistic perspective, the goal is to prevent and relieve physical, psychological, social and existential suffering. The four cornerstones of palliative care are symptom relief, teamwork, communication/relation and support to next of kin. The nurse in palliative care builds a relationship with the patient and next of kin. The nurse also works with symptom relief and informing patient and next of kin. Next of kin to patients in palliative care often put themselves aside to care for the patient and wish to be with the patient until the end of the patients’ life. Aim: The aim of the study was to describe next of kins’ need for support from the nurse in end-of-life care in hospitals. Method: A literature study based on nine qualitative articles retrieved through systematic search in database Cinahl. The articles were analysed with a five-step method. Results: Two categories emerged in the results. The first was A respectful nurse, with the subcategories Emotional support, To be together and The patient is well taken care of. The second was To be involved as next of kin with the subcategories To be informed and Participation. Conclusion: Next of kin to patients in end-of-life care need a nurse who cares for them, enables them to be with the patient and participate in the patients’ care, guides and informs them in the end-of-life process and takes good care of the patient.

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.

Background: Approximately 25,000 pediatric deaths occur in hospitals in the United States each year with over 50% of these deaths occurring in Newborn Intensive Care Units (NICU). NICU nurses are frequently involved in end-of-life (EOL) care and face unique obstacles. Objective: The objective of this study was to obtain NICU nurses suggestions for improving obstacles in EOL care in NICUs. Methods: Suggestions were obtained through mailed survey research in qualitative study design. Returned surveys yielded 121 nurse respondents who gave a total of 138 suggestions.Results: A total of 10 cohesive themes were identified: (1) environmental design issues, (2) improved communication between healthcare teams, (3) ending futile care earlier, (4) realistic and honest physician communications to families, (5) providing a œgood death, (6) improved nurse staffing, (7) need for EOL education, (8) earlier entry into hospice/palliative care, (9) availability of ancillary staff, and (10) allowing parents more time to prepare for death.Conclusions: Despite the variety of obstacles encountered in providing EOL care to dying infants and their families, NICU nurses can use self-assessment tools to identify obstacles to EOL care and collaborate with key members of the healthcare team to alleviate these obstacles.