|dc.description.abstract||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.||en