Relief from pain and distressing symptoms associated with a life limiting illness is an issue relevant to all Canadians. Provision of high quality care for persons nearing the end of life may improve the health and quality of life of the person and affects the health and well-being of members of their informal support network including family, friends, and caregivers. Palliative care, a person-centered approach to care for persons faced with a life limiting illness and their informal support network, focuses on the ‘total person’ or ‘whole self’ addressing the multifaceted complex needs of each person on an individualized basis. Palliative care is recognized by the World Health Organization (WHO) to be “achieved through prevention and relief of suffering by means of early identification, comprehensive assessment, and treatment of pain and physical, psychosocial, or spiritual problems” (World Health Organization [WHO], 2010). The palliative care philosophy prioritizes self-determination of the person and supports their engagement in the care planning and decision making process across the illness trajectory. Approximately one fifth of persons who die annually experience unrelieved suffering (Doyle & Woodruff, 2013). Persons nearing the end-of-life face can face a wide range of challenges that may include: uncontrollable pain and physical symptoms, unresolved and emotionally distressing psycho-social issues, and fear of one’s own mortality and of an unknown future. Nearly two thirds of Canadians who die each year may benefit from palliative care (Canadian Hospice Palliative Care Association [CHPCA], 2010), however only approximately one in eight of those persons are able to access palliative care services (Carstairs & Beaudoin, 2000). Comprehensive clinical assessment supports clinicians to make evidence-informed decisions and promotes a person-centered approach to care planning. The interRAI Palliative Care assessment instrument (interRAI PC) is a comprehensive standardized assessment instrument, designed for use by facility and community based palliative care services, with applications that include care planning, outcome measurement, quality monitoring, and resource allocation (Hirdes et al., 1999; Steel, et al., 2003; Gray, et al., 2009; Hirdes et al., 2008). Using pilot data gathered from the interRAI PC, this thesis examines the potential use of interRAI PC assessment data, and in particular how evidence from the interRAI PC Clinical Assessment Protocols (CAPs) has the potential to inform individualized care plan development for persons with a life limiting illness. This thesis begins with a scoping literature search that describes palliative care in a Canadian context and explores care planning with the interRAI PC. This is followed by three research based chapters (Chapters 6, 7, and 8) that include analysis based on pilot data gathered between 2006 and 2011 using the interRAI PC assessment instrument. Community dwelling persons with a life limiting illness receiving palliative home care services in six geographic locations across Ontario, Canada, were included in these analyses. Persons with a life limiting illness residing in institutional or hospice facilities, or in jurisdictions outside of Ontario, were excluded. Analyses were performed using SAS Version 9.2 with an alpha level of p< 0.05 for all statistical tests unless otherwise stated. The University of Waterloo’s Office of Research Ethics granted ethics clearance for this research (ORE# 19424) November 29th, 2013. The first research chapter (Chapter 6) describes how clinicians may use the interRAI PC Clinical Assessment Protocols (CAPs) to inform care planning. It includes an overview of the suite of eight CAPs and provides a background description of the CAP development process. Discussion addresses the unique distributional characteristics of each CAP and describes a hierarchical triggering structure. Following, chapter six which provides an overview of the interRAI PC CAPs from a broad perspective; chapter seven (the second research chapter) takes a more in-depth focus investigating the Dyspnea CAP. Dyspnea was selected as the symptom of focus because it is the one of the most commonly triggered CAPs affecting nearly half of the sample palliative home care population used in this thesis and is reported to be one of the most distressing symptoms affecting both the person faced with a life limiting illness and their informal caregivers (Ng &von Gunten, 1998; Potter, Hami, Bryan, & Quigley, 2003; Dellon et al., 2010; Kroenke, Johns, Theobald, Wu, & Tu 2013). Chapter seven examines the Dyspnea CAP and describes the prevalence of dyspnea. This chapter demonstrates the relationship between dyspnea and prognosis as well as other clinical factors. Moreover, how the presence of dyspnea changes over time is examined and person-level characteristics, some of which are potentially amenable to change, that affect the risk for dyspnea over time are identified. In addition, risk and protective factors for persons who over time developed new dyspnea symptoms and for those who recovered from dyspnea are examined. Recognizing that a hallmark of the palliative care philosophy is its aim to provide the highest quality of care and support for both the person nearing the end of life and members of their care network including their informal caregivers, the third research chapter (Chapter 8) examines distress experienced by both the caregiver and the care recipient as a unit of care. As quality palliative care may increase satisfaction with care, improve global quality of life for client and their caregiver, reduce physical symptoms like dyspnea, decrease signs of depression or anxiety, and improve access to health care resources (Kane, Bernstein, Wales, Leibowitz, & Kaplan, 1984; Melin-Johansson, Axelsson, Gaston-Johansson, & Danielson, 2010) the association between the presence of dyspnea and distress experienced by members of the caregiver-client unit of care is examined to illustrate how dyspnea relates to distress, a major problem affecting over half of the caregiver-client units of care. Together, findings from this thesis show that if one or more interRAI PC CAPs are triggered then the clinician should take notice. Data from the interRAI PC and more specifically from the interRAI PC CAPs examined in this thesis provide evidence on their potential to inform greater understanding of the complex needs of palliative home care clients. Better understanding of the interRAI PC CAPs and identification of patterns in CAP triggering structure suggest symptoms where clinicians may focus increased attention. To address the accumulative complex needs of persons who are faced with a life-limiting illness and the needs of their caregivers, resource allocation focused on evidence gathered from a comprehensive standardized assessment instrument should be prioritized.

The hospice social movement, which emerged as a new social movement based on the ideals of providing a more humane and natural approach towards death, illness, and grief, led to the creation of community-based hospice programs across Canada. This single case study explored the factors that influenced the life course of a small, community-based hospice (Hospice Orillia) from its beginning in 1987 to 2017. A preliminary timeline was created through a review of secondary data sources which identified milestones, events and individuals who were in leadership roles in the organization. This information was then used to recruit nine key informants who participated in semi-structured interviews. Through thematic analysis, the interviews identified that the organization’s geographic location, its relationship to the formal health care system, its ability to access funding, and issues regarding advocacy and awareness all played key roles in how it developed over the years, leading to its eventual decline. / Graduate

Title: Spiritual Care Interventions and Quality of Life in Cancer Patients Receiving Palliative Care Background: Despite the evidence supporting spiritual care in nursing and an increased quality of life among patients, patients feel that their spiritual needs are not being supported by medical professionals. Nurses agree that the role they play is significant in addressing the needs of cancer patients; however, they feel that they lack the knowledge for addressing spirituality concerns at the end of life. The purpose of this study is to identify spiritual care interventions that nurses can implement to improve quality of life (QOL) in patients with advanced cancer receiving palliative care. Method: This literature review consisted of articles retrieved from several databases, including CINAHL, PubMED, and PsychINFO, PsychARTICLES, ATLA Religion databases using the key words "cancer'" and "quality of life" "therapeutic communication", "spirit' therapy", "relaxation therapy", and "self-care". Inclusion criteria consisted of research conducted after the year 2000, peer reviewed work and research studies written in the English language. Results: Results from this literature review include recommended nursing interventions that provide spiritual care to patients with advanced cancer receiving palliative care for the purpose of improved quality of life. Spiritual care interventions identified in this study include Meaning Centered Group Psychotherapy (MCGP), Supportive Group Psychotherapy (SGP), mental relaxation, mental images, TM, art therapy, socializing, communicative acts, aromatherapy, massage, exercise, hatha yoga, meditation, and activities such as gardening, watching TV, resting/sleeping and socializing.

This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care. Hospice palliative care is the profession specifically developed to care for the dying. The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia. Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia. Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p. 2). This study goes someway towards filling this gap. In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach. These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals. This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life. Several key insights were illuminated. Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested. Secondly, a predominantly modernist account of personhood was located in the narrative accounts. This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised. An embedded ontological account was provided which would assist with the understanding and practice of total care. Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice. It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice. However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational. This led to the proposal of a new telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life. Lastly, the ethical frameworks which guided practice for the professionals were presented. In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics. An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between. Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person. The relationships in this social practice, between each other, accompanying one another, are our ethical compass. This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members. These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members. This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession. This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice. In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life.

Home hospice care - applicability of Australian Standards on patient admission This master thesis inspects topic of home hospice care in the context of the Czech Republic. It aims to provide the reader with consistent overview regarding home hospice and palliative care as dealt with by particular organization, understanding of the topic in a broader context, and further information about the system and practical information. The thesis consists of a theoretical and practical section. The former introduces the general topic, mapping its history from initial thoughts up until the current day home and residential hospices while defining numerous terms applied in the latter. The empirical section then focuses on examining the process of admission of terminally ill patients into home hospice care. Firstly, the approach taken by concerned organization is examined, selecting appropriate Australian Standards for implementation. A three-month implementation period follows, which is reflected on through interviews with team members. The conclusion offers suggestions for improvements in the ways of working and hence the provided care on the whole, applicable across all home hospice teams. The text is targeted at an adult reader. Keywords: Home hospice. Palliative care. Patient admission. Standards. Australian...

Title of the diploma thesis: Use of promotive therapy and stimulation in hospice care Aim of the thesis: Possible use of promotive therapy and stimulation in therapy of patients in hospice care is discussed in this diploma thesis. The aim of thesis is to compare use these therapies in hospice facilities that provide accommodation for clients or in home hospice care in the Czech Republic and the Slovak Republic and to analyze way of its use in praxis. For purpose of this thesis following promotive therapies and stimulation were selected: music therapy, art therapy, bibliotherapy, basal stimulation and concept Snoezelen. Methods of work: Quantitative and qualitative investigation was used for research. Quantitative investigation in form of questionnaires provided to hospice facilities with accommodation for clients was utilized as a method for data acquisition. Observation of practical promotive therapies processes in hospice facilities with accommodation for clients was included in methodology of qualitative investigation. Results: Research deals with death and dying which is still quite often taboo theme in our conditions. This fact is perceptible in results of research investigation. It was revealed that offer of promotive therapies, which are provided professionally and defined in advance, is not...

The issue of death and dying affects everyone, it is not easy and yet a natural part of everyone's life. Hospice care offers help and support a dying man and his close on the last trip "home". This thesis describes the possibilities of a preparatory course for the volunteers who play an irreplaceable role in hospice care. The practical part describes the specific example from the conditions of the Czech home hospice - The Home Coming, which is being commented on the ground of literature and my personal experience. The outcome of the research is the feedback for the management of the home hospice - The Home Coming, including recommendations for changes of the preparatory course.