Introduction: This study compared societal costs of care between two settings of palliative care delivery and death (home versus hospital) in an integrated palliative care program in Toronto. Methods: 186 terminal cancer patients participated in the study. Total societal cost of end-of-life care was compared between patients who died in the home and patients who died in the hospital. Total societal cost of end-of-life care was modeled as a function of the number of days the patients spent at home during the palliative trajectory. Results: There was no statistically significant difference in total cost of end-of-life care between home death and hospital death patients (p>0.05). Furthermore, an additional day the patient spent at home led to a significant increase in the total cost of end-of-life care (p<0.05). Conclusion: The results demonstrated that from a societal perspective, providing palliative care under an integrated palliative care program at home may be just as expensive (if not more expensive) as caring for them in the hospital.

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.

No description available.

Background: The demand for hospice palliative care (HPC) services is expected to grow due to the increasing number of seniors living into advanced old age, the changing nature of death, and the changing family structure. HPC is a philosophy of care that aims to relieve suffering and improve the quality of life for clients with life-threatening illnesses or end of life issues. The goals of HPC are not only to ameliorate clients’ symptoms but also to reduce unneeded or unwanted medical interventions such as emergency room visits or hospitalizations (ERVH). Hospitals are considered a setting ill-prepared for end of life issues. Therefore, use of such acute care services has to be considered an indicator of poor quality end of life care. It is important to understand the factors that contribute to ERVH in order to determine how to minimize the number of avoidable hospital visits. Objectives: The objectives of this study were to report the proportion of palliative home care clients with ERVH, describe the characteristics of clients with ERVH, and identify the predisposing, enabling, and need-for-care variables associated with ERVH. Methods: Analysis of secondary data was performed on a palliative home care dataset from the Hamilton Community Care Access Centre (CCAC). All palliative home care clients receiving services from the Hamilton branch were assessed using the interRAI Palliative Care (interRAI PC), which is a comprehensive, standardized instrument. One assessment for each client assessed between April 2008 and July 2010 was used, for a final sample size of 764. Results: Half of the palliative home care clients had one or more ERVH. Visits to the emergency department by time of the day and day of the week were relatively stable. Logistic regression and Cox regression analyses showed that wish to die at home and advance care directives are protective against ERVH. Unstable health, identified by a Changes in Health End stage disease and Signs and Symptoms scale (CHESS) score of 3 or higher, was associated with reduced odds of ERVH, while infections such as prior pneumonia and prior urinary tract infections increased odds of ERVH. Conclusions: Predisposing characteristics (i.e., wish to die at home and advance care directives) are nearly as important as need variables (i.e., CHESS and prior urinary tract infection) in determining ERVH among palliative home care clients, which challenges the assumption that need variables are the most important determinants of ERVH. There was a lack of significant association between many assessed needs and ERVH, perhaps due to the fluctuating health status among such clients and the stability of measurements. Ongoing assessment of palliative home care clients is essential in reducing ERVH, as reassessments at specified intervals will allow care and service plans to be adjusted with clients’ changing health needs and end of life preferences.

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Diss. (sammanfattning) Göteborg : Göteborgs universitet, 2007. / Härtill 4 uppsatser.

Diss. (sammanfattning) Uppsala : Univ., 2001. / Härtill 4 uppsatser.

Diss. (sammanfattning) Göteborg : Göteborgs universitet, 2007. / Härtill 6 uppsatser.

People with advanced dementia often struggle to maintain relationships and can ultimately experience social death before their physical death. Social death occurs when a person is no longer treated as an active agent in their relationships. Relationship-centred care acknowledges the relational nature of care-giving and care-receiving, validating the support needs of both care-givers, and the person receiving care. In the context of care-giving and care-receiving, a person with advanced dementia can become viewed as a passive recipient of care. In the context of caring for people with advanced dementia, more needs to be understood about how caring relationships can be sustained until the end of life in a way which challenges the social death of people with advanced dementia, and supports carers. Understandings of, and assumptions about, the effect of dementia on personhood directly affect the way people with dementia are perceived by others, the quality of their relationships, the quality of their care and the quality of their life. Dementia is often associated with the loss of the person. Kitwood (1997) has been highly influential within dementia care in challenging the loss of personhood, and reconsidering the grounds of personhood, emphasising relationships over cognition. Kitwood’s often cited definition of personhood is: ‘a standing or status bestowed on one human being, by another, in the context of relationship’ (Kitwood 1997 p8). Kontos (2004) however, critiques this social interactionist view of personhood, suggesting it potentially relegates the ‘body’ to a symbolic position rather than guaranteeing personhood. Her work examines the way that personhood is embodied, and how this persists when a person has advanced dementia. She suggests that attention to the embodied aspects of personhood could act as an important counter to the social death of people with advanced dementia, increasing the scope and opportunities for interpersonal relationships, and improved quality of care and quality of life. Zeiler (2013) and Jenkins (2013) develop this theory further, describing intercorporeal personhood springing forth through, and in, interaction, enabling individuals who cannot express themselves without support to do so in interactions. The principle aim of this doctoral research is to examine the care-giving/care-receiving relationship, in palliative dementia care, through the theoretical lenses described above. The research took place in a care home called ‘Primrose Hill’ (a pseudonym): a specialist dementia care home (without nursing), with an increasingly frail population with multiple co-morbidities. Fifteen residents died during the 10 months of the study. The research employed an ethnographic approach, using participant observation alongside interviews and group discussions with staff. Attention was given to how people with dementia responded to care and how they were positioned within the caring relationship; were they seen as passive recipients of care or as active agents, objects or subjects? The approach was appreciative in intent, based on the assumption that care home staff, and people with dementia who live in care homes, through their experience of the human encounter, have important things to teach families, and others working in dementia care, including policy makers and care regulators. When articulated and shared, their experiences can challenge the stereotype of dementia as a ‘death that leaves the body behind’. The empirical analysis revealed three keys facets which shape the caring relationship: body work (direct hands-on bodily care); recognising and supporting selfhood; witnessing and responding to suffering. These three facets of palliative dementia care are examined and reveal the way that people with dementia, even in the advanced stages, continue to experience and respond to the world, and those around them, until they die. This is used to develop the conceptual underpinning of relationship-centred palliative dementia care. The Senses Framework (Nolan et al 2006), which sets out the conditions required for relationship-centred care to occur, is expanded to incorporate embodied selfhood and intercorporeal personhood. The research concludes by arguing, using Ethic of Care theory as an interpretive framework, that an expanded understanding of personhood that includes the ‘body’ is vital, not only at the frontline, but also at a political and societal level, if care is to have integrity.

Purpose: Within the contemporary socio-political context of palliative care and an aging demography, there is a called-for shift to an upstream provision of palliative care in the form of a palliative approach to care as well as to frame access to palliative care within a health equity perspective. In the literature, there is a paucity of nurses’ experiences in the provision of palliative care within psychiatric settings. Moreover, little is known of the process by which nurses engage in a palliative approach to care for patients experiencing multiple marginalities, including institutionalization, mental health, and advanced age. This research explored how nurses in forensic and geriatric psychiatry engage with aging patients and mortal considerations to discern how ethical dimensions of care, aligned within the palliative approach, are enacted. An ethical lens by which to apprehend dimensions of human finitude, reflective of central elements of the palliative approach and public health palliative care, was proposed to help to delineate a process of recognition through which values can be identified in the care of patients. The purpose of this thesis was to explore the phenomenon by which nurses engaged with mortality as both an antecedent to adopting a palliative approach and as a phenomenon that captures nurses’ continued engagement with patients within this approach. Objectives: There were three objectives to the project: 1) explore nurses’ engagement with mortality within an ethics of finitude; 2) identify enablers and barriers, and related historical and socio-political discourses, to engagement of nurses with their patients within an ethics of finitude, and; 3) articulate and deepen understanding of the palliative approach, including ethical dimensions and considerations. The research was an analytical elaboration of a qualitative study at the University of Ottawa that examined the palliative approach to nursing care in forensic and geriatric psychiatry at a mental health facility in eastern Ontario. Methods: Situated within a constructivist epistemic stance, the analytical framework elaborated for this analysis drew from both interpretive description (ID) and interpretive phenomenological analysis (IPA). Utilizing convenience sampling, eight Registered Nurses (7 women and 1 man) working in forensic or geriatric psychiatry completed interviews. Findings: Engagement of nurses within an ethics of finitude was revealed to surface through a process of recognition (recognition of mortality, recognition of the increased vulnerability of patients, and recognition of a corresponding increased responsibility for vulnerable patients) and through the affirmation of values including human connection, dignity, comfort, family, familiarity, and personhood. Barriers and enablers to this engagement emerged related to the care environment, the psychiatric nurse and patient construction, and factors related to family. The implications of the related discourses in the articulation of the palliative approach emerged in relation to health system considerations and to the language of the palliative approach. Conclusion: The process of recognition explored through the proposed ethical lens and revealed in the findings delineated values that underpin the palliative approach by offering an alternate conceptualization to their identification and enactment. Insights from this project underscore preliminary insights on a process to identify care practices aligned within the palliative approach as well as possibilities for critical questioning related to interconnected axes of an ethics of finitude in both the care of individual patients and in the enactment of health policy.