Applied Science, Faculty of
Music, School of
DSpace
UBCV
Elliott, Carly
Master of Science in Nursing - MSN
University of British Columbia
British Columbia’s Palliative Care Benefits (BCPCB) is a provincial program implemented by the Ministry of Health that offers coverage of medications for symptom management through the PharmaCare BC Palliative Care Drug Plan (Plan P), as well as medical supplies and equipment through local health authorities for eligible patients. BCPCB is available to B.C. residents who have reached the end stage of a life-threatening illness and wish to receive palliative care services at home. Utilizing Fairclough’s Dialectical–Relational Critical Discourse Analysis, this thesis analyzed how BCPCB registration and a companion policy, the Home and Community Care Policy Manual: Home Health Services, governs practices that determine service users’ eligibility for BCPCB, as well as determining resource allocation based on perceived level of the service user’s need, function, illness burden and urgency. This analysis aimed to show how the BCPCB and Policy Manual are constructed within socio-historic discourses of biomedicalism, medical paternalism, empiricism, ableism, postcolonialism, and neoliberal orientations of the provincial government. The BCPCB and Policy Manual define eligible service-users as patients with “life-limiting illness” who are determined by a physician to be in the last 6 months of life. To be considered eligible, service users must also agree to receive palliative care services in the home and consent to comfort care as the focus of treatment. Vague and discriminatory prognostication practices outlined by the BCPCB are implemented by physicians to determine service user eligibility to BCPCB, while unclear and ableist-oriented approaches to determine resource allocation is outlined in the Policy Manual and implemented by nurses once service users are deemed eligible for BCPCB. The discourses of the BCPCB and Policy Manual can be seen as produced within neoliberal governing practices that prioritize efficiency in the production and consumption of health services over the redistribution of healthcare costs equitably among society. Current health care practices and structures that rely on narratives and discourses based on deficit, physical function, prognostication, and illness burden perpetuate health inequities for service users at the end of life. Nurses are ideally positioned to challenge discourses and practices that compromise the human rights of people living with life-limiting illness.
A CRITICAL DISCOURSE ANALYSIS OF BRITISH COLUMBIA’S PALLIATIVE CARE BENEFITS ELIGIBILITY by CARLY ELLIOTT B.S.N, Langara College, 2014 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) OCTOBER 2023 © Carly Elliott, 2023 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: A Critical Discourse Analysis of British Columbia’s Palliative Care Benefits Eligibility submitted by Carly Elliott in partial fulfillment of the requirements for the degree of Master of Science in Nursing in Nursing Examining Committee: Helen Brown, Associate Professor, School of Nursing, UBC Supervisor Lydia Wytenbroek, Assistant Professor, School of Nursing, UBC Supervisory Committee Member Farinaz Havaei, Assistant Professor, School of Nursing, UBC Supervisory Committee Member iii Abstract British Columbia’s Palliative Care Benefits (BCPCB) is a provincial program implemented by the Ministry of Health that offers coverage of medications for symptom management through the PharmaCare BC Palliative Care Drug Plan (Plan P), as well as medical supplies and equipment through local health authorities for eligible patients. BCPCB is available to B.C. residents who have reached the end stage of a life-threatening illness and wish to receive palliative care services at home. Utilizing Fairclough’s Dialectical–Relational Critical Discourse Analysis, this thesis analyzed how BCPCB registration and a companion policy, the Home and Community Care Policy Manual: Home Health Services, governs practices that determine service users’ eligibility for BCPCB, as well as determining resource allocation based on perceived level of the service user’s need, function, illness burden and urgency. This analysis aimed to show how the BCPCB and Policy Manual are constructed within socio-historic discourses of biomedicalism, medical paternalism, empiricism, ableism, postcolonialism, and neoliberal orientations of the provincial government. The BCPCB and Policy Manual define eligible service-users as patients with “life-limiting illness” who are determined by a physician to be in the last 6 months of life. To be considered eligible, service users must also agree to receive palliative care services in the home and consent to comfort care as the focus of treatment. Vague and discriminatory prognostication practices outlined by the BCPCB are implemented by physicians to determine service user eligibility to BCPCB, while unclear and ableist-oriented approaches to determine resource allocation is outlined in the Policy Manual and implemented by nurses once service users are deemed eligible for BCPCB. The discourses of the BCPCB and Policy Manual can be seen as produced within neoliberal governing practices that prioritize efficiency in the production and consumption of health services over the redistribution of healthcare costs equitably among iv society. Current health care practices and structures that rely on narratives and discourses based on deficit, physical function, prognostication, and illness burden perpetuate health inequities for service users at the end of life. Nurses are ideally positioned to challenge discourses and practices that compromise the human rights of people living with life-limiting illness. v Lay Summary British Columbia’s Palliative Care Benefits (BCPCB) is a public program that helps B.C. residents in the terminal stage of illness to pay for specific medications, equipment, and home support services. This study analyzed BCPCB and the Home and Community Care Policy Manual: Home Health Services, to better understand how language is used to delineate eligibility and access to the services offered by BCPCB for service-users. Study findings demonstrate how these texts constitute health care providers as gatekeepers to subsidized palliative care services for individuals with life-limiting illness utilizing unsubstantiated assessment tools for determination of eligibility. Study findings illustrate that the use of alternative language based on shared decision making and equity should be incorporated in these texts to promote service-user rights and dignity. vi Preface This thesis is my original, unpublished work, completed in collaboration with my supervisory committee. The discourse analysis portion of this thesis was completed by myself alongside the input of and guidance from my primary supervisor, Dr. Helen Brown and Supervisor Committee Members, Dr. Lydia Wytenbroek and Dr. Farinaz Havaei. The writing of the thesis was completed in collaboration with all supervisory committee members: Dr. Helen Brown, Dr. Lydia Wytenbroek and Dr. Farinaz Havaei. vii Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ................................................................................................................................. v Preface .......................................................................................................................................... vi Table of Contents ......................................................................................................................... vii List of Tables…………………………………………………………………………………..... ix Acknowledgements ........................................................................................................................ x Dedication……………………………………………………………………………………… xiii Chapter 1: Introduction and Background ....................................................................................... 1 Introduction......................................................................................................................... 1 Experiences in Palliative Care Practice………………………………...………………... 2 Discourses in Palliative Care ............................................................................................. 6 Palliative Care Policies……………………………………..…………………………..... 7 Research Questions .......................................................................................................... 14 Thesis Outline .................................................................................................................. 14 Chapter 2: Theoretical Framework and Methodology ................................................................. 16 Methods and Data Analysis ............................................................................................. 19 Ethical Considerations and Limitations ........................................................................... 26 Chapter 3: Discourses of Eligibility in BC Palliative Care Policies……………………............. 28 Palliative Care in Canada - History and Context ............................................................. 29 The Discursive Power of Biomedicine: Diagnosis and Prognostication by Physicians………………………………………..………………………....................... 39 Construction of B.C. Palliative Care Benefits Eligibility Policy...................................... 45 Interests are Served by BCPCB Policy……………………………………………….… 47 The Discursive Construction of the Home and Community Care Policy Manual…………………………………………………………………………...……... 54 Construction of the Policy Manual for Eligibility of BCPCB Resources…………….... 59 Interests Served in the Allocation of BCPCB Resources……………………………..... 64 Legislation and Discourse ................................................................................................ 66 viii Summary .......................................................................................................................... 66 Chapter 4: Discussion and Implications of the Discourse of Eligibility ...................................... 68 Palliative Care Nursing Practice....................................................................................... 73 Chapter 5: Recommendations and Conclusion ............................................................................ 76 Policy…………………………………………………………………………………… 76 Education………………………………………………………………...……………... 77 Nursing Practice………………………………………………………………………… 78 Future Research ............................................................................................................... 81 Conclusion……………………………………………………………………………… 82 References .................................................................................................................................... 84 ix List of Tables Table 1 Home and Community Care Policy Manual Chapters and Sections …………... 24 x Acknowledgements I offer my enduring gratitude to my supervisor Dr. Helen Brown and committee members Dr. Lydia Wytenbroek and Dr. Farinaz Havaei who have been tremendously supportive and generous throughout my thesis process. Helen, I am deeply grateful for your expertise, guidance, and mentorship. You have supported me throughout my graduate journey and have helped develop my capacity for critical engagement and reflection - providing me with insights that will serve me for the rest of my career. Lydia and Naz, thank you for all of your brilliant and perceptive conversations and teachings. Your critical reflections contributed a deeper dimension of analysis and enriched my overall understanding of discourse analysis. I also owe particular thanks to my fellow classmates in the MSN program for filling my graduate experience with such thought-provoking discussions that have greatly contributed to my capacity for critical analysis. I would also like to extend significant gratitude to Winona Rohrback and Shannon Mertz, who facilitated my path to becoming a palliative care nurse; whose kindness, immense caring and genuine curiosity continue to act as inspiration for my way of being and practicing in the world. Also, to Sandy Johnson, Leona Lo, Shelley Samchuk, Pav Heer, Raman Takhar, Nona Shorey, Kelly Hughes, Tara Lum, and Sharon Stunder, who concretely believed in my capacity and potential well before my ability or willingness to see them in myself. Thank you for the encouragement, opportunities and mentorship that led to my application and acceptance into UBC’s MSN program. I am deeply grateful for my family whose unending support has been central throughout my graduate journey. I want to thank my parents for their unconditional love and support, and my brother, sisters-in-law, and extended family for their endless encouragement. Abigail, the xi sweetest girl on earth – aunty loves you to the moon! My partner Rhys, whose love, playfulness, care, patience, and understanding have supported me through the most difficult and brightest of moments in this journey. To my amazing and wonderful friends, Heather, Whitney, and Jas - you have filled this experience with peace and good humour. I am beyond grateful to be surrounded by such a loving, generous, understanding, and compassionate community of people. Finally, I would like to thank and acknowledge the nurses I’ve had the opportunity to work with throughout my career. Your consideration and compassion are inspiring and are making a valuable impact on those you have and continue to serve. You provide me with great hope, showing that equitable care is in fact possible - even amongst the complexities of our current heath system and times. xii Dedication To my parents and my Grandma Cathy 1 Chapter 1: Introduction and Background Introduction British Columbia’s Palliative Care Benefits (BCPCB) is a provincially funded social service program that offers coverage of symptom management medications through the PharmaCare BC Palliative Care Drug Plan (Plan P), and coverage of medical supplies and equipment through local B.C. health authorities for eligible service users (British Columbia Ministry of Health, 2021). BCPCB is available to B.C. residents of any age who have reached the end stage of a life-threatening disease or illness and wish to receive palliative care services at home (British Columbia Ministry of Health, 2021). Eligibility and registration for BCPCB is determined by a physician’s assessment that deems a service user to be living in the last 6 months of life (British Columbia Ministry of Health, 2021). In addition, service users must agree to receive palliative care services in the home and must consent to comfort care as the sole focus of treatment in order to qualify for BCPCB (British Columbia Ministry of Health, 2021). Once a service user is deemed eligible for BCPCB by a physician, a palliative care nurse assesses the individual in their home to determine the level of care and resources they are eligible for under the BCPCB program (British Columbia Ministry of Health, 2019). The level of care and resources that a BCPCB service user is eligible for is determined by the palliative care nurse’s assessment which is based on service user need, function, urgency, and illness burden outlined in the B.C. Ministry of Health’s (2013; 2019) Home and community care policy manual: Home health services. British Columbia averages over 30,000 deaths per year with the three most common underlying causes of death being diseases of the circulatory system (34%), cancer (28%) and respiratory disease (10%) (Canadian Institute for Health Information, 2008). The Canadian 2 Institute for Health Information (CIHI, 2008) estimates that only 27.4% of these decedents1 in B.C. were formally registered as palliative care patients despite many of these deaths being related to chronic, life-limiting illnesses rather than a sudden death event (CIHI, 2008). The population that had the highest number of registrants for BCPCB was individuals diagnosed with cancer (CIHI, 2008). B.C. residents with chronic illnesses other than cancer often reach the terminal phase of their life without having been offered many of the physical and social resources available through BCPCB (Fitzsimons et al., 2007; CIHI, 2008). Furthermore, research has found that most people in BC would prefer to die at home or in the community yet 53% of British Columbians still die in the hospital every year (Jayaraman & Joseph, 2013). While some of these hospitalizations in the final days of life may be necessary or unavoidable, these statistics suggest that there is a need for greater access to quality palliative and end-of-life care earlier in an individual’s illness trajectory (CIHI, 2008). Experiences in Palliative Care Practice My interest in this thesis topic arose from my clinical experience as a registered nurse. I have been a community health nurse for 8 years and obtained my certification from the Canadian Nursing Association (CNA) for Hospice Palliative Care in 2019. My passion for palliative care developed during my final preceptorship as a nursing student at Langara College. I was placed in a Home Health unit during my preceptorship and this is where I began to learn about palliative care in the home setting. My previous experience in my nursing education had primarily been focused on acute medicine. I found working in institutional, tertiary care morally distressing as the emphasis of care would typically be disease or pathology focused (Pastrana et al., 2008). I observed the 1 Refers to the people who have died. 3 prominence of empiricism in medicine in a myriad of ways but noted how medicine categorizes service users as either an age group or object of study, such as a pathology, a body system, or a technical approach (e.g. surgery) (Pastrana et al., 2008). This reductionist approach to care conflicted with my own ethical understandings of autonomy, beneficence, and non-maleficence. Patients I encountered in acute care were often living with life-limiting illnesses, and their nursing care plans were habitually focused on treating the illness or condition until a level of stability was achieved, with the goal to send patients home as soon as possible (Pastrana et al., 2008). These experiences in acute care raised many ethical questions for me as a nursing student, such as: is a dominant focus of treating a patient’s acute exacerbation or illness before immediate discharge home in their best interest? Is patient autonomy being upheld when providing standard curative education about managing life-limiting illnesses? Is harm being done to a patient when care providers only consider treatment of their illness and don’t explore the factors that contributed to their illness formation and exacerbation? I felt validated when I discovered the philosophy of palliative care and how it focused on the human being rather than the pathology (Pastrana et al., 2008). Palliative care was most concerned with alleviating physical, emotional, psychosocial, and spiritual suffering, as well as enhancing the quality of life (British Columbia Ministry of Health, 2006). I found the ethical principles of justice and dignity were central to palliative care, with a significant focus on client empowerment and informed decision making (Pastrana et al., 2008). I felt morally aligned with this philosophy and witnessed how this shift in focus from curative to comfort care offered incredible hope and dignity to individuals with life limiting-illnesses. I had never observed this kind of empowering experience previously for patients in an acute setting. I became deeply 4 drawn to the supportive, protective, client-centred, and holistic approach that palliative care offered to individuals at their time of profound loss (Pastrana et al., 2008). As I developed my practice as a palliative home care nurse, I became increasingly aware of BCPCB and the Policy Manual, and how these policies are applied in practice. I could see that BCPCB offered a fair range of supportive services for clients and their families, which allowed for palliative care in the home to be a viable and preferred option. However, I also witnessed how BCPCB can be used to discriminate, limit, or deny access to individuals with life-limiting illnesses to subsidized services due to eligibility criteria founded on prognostication and goals of care which negatively impacts the quality of life of palliative patients and their families (Oudshoorn, Ward-Griffin & McWilliam, 2007). As service users in B.C. require a diagnosis with an expected prognosis of 6 months of life or less in order to be considered eligible for BCPCB, many clients with life-limiting illnesses - whose disease progression may be slow or unpredictable - are deemed ineligible for these benefits (CIHI, 2008). Without these benefits, many service users and their families experience significant financial hardship and increased caregiver burnout (Oudshoorn, Ward-Griffin & McWilliam, 2007). This can result in a poorer quality of life for palliative patients and their families through increased suffering and physical, emotional, mental, and spiritual strain (Oudshoorn, Ward-Griffin & McWilliam, 2007). Not only have I witnessed the impact of these policies on client access to services and resources, I have also experienced the impact of these policies on the well-being of palliative home care nurses. Moral distress significantly impacts the well being of palliative home care nurses (Brazil et al., 2010). Brazil et al.’s (2010) study found that palliative home care nurses are confronted with many moral conflicts that result in moral distress, including a lack of adequate support, staffing and resources that results in profound physical and emotional strain on informal 5 caregivers and palliative care clients. Brazil et al.’s (2010) study found that the higher the level of caregiver burnout2 resulted in an increased risk of abuse and neglect of the palliative client. Palliative home care nurses reported that they frequently witness caregiver burnout in the home as a result of a lack of support and resources; this often generated concerns for client safety and resulted in severe moral distress for the nurses (Brazil et al., 2010). The Home and Community Care Policy Manual: Home Health Services outlines specific criteria for clients to be considered eligible for varying levels of resources, including equipment and home support services (British Columbia Ministry of Health, 2019). The nursing assessment determines the level of function of the client, and the Policy Manual3 delineates the hours of service and available equipment the client is entitled as based on their degree of illness burden4 and physical deficit (British Columbia Ministry of Health, 2019). The protocols outlined in the Policy Manual guide palliative home care nurses’ clinical decision making with the goal of meeting fiscal constraints when allocating BCPCB resources (Oudshoorn, Ward-Griffin & McWilliam, 2007). Oudshoorn, Ward-Griffin & McWilliam (2007) found that policies from the Policy Manual constrain palliative home care nurses from involving clients in decision-making related to their care which contradicts a holistic palliative approach and thereby directly impacts nursing morale, mental health, well-being, and job satisfaction. I was inspired to pursue this thesis by the upcoming revisions taking place in the Framework of Palliative Care in Canada Act (Health Canada, 2017). The Framework of Palliative Care in Canada Act was passed in December of 2017 (Health Canada, 2017). This Act 2 Caregiver burnout is a state of physical, emotional, and mental exhaustion. Stressed caregivers may experience fatigue, anxiety, and depression. 3 The Policy Manual is used by nurses to determine the number of resources a patient is eligible for once a patient is registered for the BCPCB by a physician. 4 Illness burden refers to the severity of disease symptoms and the degree of dependence a patient has on caregivers to complete activities of daily living. The greater the patient’s symptoms and dependence on others, the greater their illness burden. 6 was created by the Canadian Minister of Health in consultation with the representatives of the provincial and territorial governments responsible for health, as well as with palliative care providers (Health Canada, 2017). The primary goal of the Act was to develop a framework designed to support improved access for Canadians to palliative care services at all levels of care, including hospitals, home care, long-term care facilities and residential hospices (Health Canada, 2017). Other priorities of this Act are to (1) define what palliative care is (2) identify the palliative care training and education needs of health care providers as well as other caregivers (3) identify measures to support palliative care providers (4) promote research and the collection of data on palliative care (5) identify measures to facilitate a consistent access to palliative care across Canada (6) take into consideration existing palliative care frameworks, strategies and best practices (7) and evaluate the advisability of re-establishing the Department of Health’s Secretariat on Palliative and End-of-Life Care (Health Canada, 2017). Five years have passed since this Act was created and it is now due for review (Health Canada, 2017). This is an ideal time to engage in this study to increase awareness of inequitable aspects of palliative care services in B.C., while potentially helping to inform the upcoming transformation of palliative care service in Canada - including health policies and procedural documents involving service users affected by BCPCB. I believe that challenging ableist and discriminatory discourses will ultimately shift the ways in which people with life-limiting illness are portrayed in palliative care legislation, health policy and practice documents, while achieving improvements in service access and direct care practices. Discourses in Palliative Care Discourses not only construct our understandings of life-limiting illness and palliative care, but also the frameworks for addressing them (Fairclough et al., 2012). While definitions of 7 discourse vary, this study defines discourse as semiotic ways of interpreting aspects of the world, which can generally be identified with different positions or perspectives of different groups of social actors (Fairclough, 2009). Discourses function to establish literary bodies in hierarchical relations to each other in accordance with dominant power relations (Fairclough, 2009). Thus, discourses within policies maintain power to shape, influence, and establish equitable treatment (Fairclough et al., 2012). However, discourses also play a role in legitimizing and formalizing inequitable treatment, often disadvantaging those already experiencing social and economic marginalization (Fairclough et al., 2012). It is therefore important to analyze how discourse is utilized in the healthcare context to maintain or improve social systems of inequity for people experiencing life limiting-illness (Fairclough et al., 2012). Palliative Care Policies In British Columbia, palliative care is considered a specialized service that is offered to service users in their last months of life (British Columbia Ministry of Health, 2015). These specialized services are offered in the home, in hospice and in short-term stay units in hospitals (British Columbia Ministry of Health, 2015). The policies that direct palliative care services and resources for use in the home setting in British Columbia include BCPCB and the Home and Community Care Policy Manual: Home Health Services (British Columbia Ministry of Health, 2015). The BCPCB program was implemented in 2001 and was created in response to the needs of B.C. residents: an increasingly aging population coupled with the challenging topography of BC required a strategy to improve access to palliative care services in the home setting (Crooks, 2009). However, even after the BCPCB program’s implementation, key stakeholders continue to identify obstacles and challenges to equitable access to BCPCB for service users in B.C. (Crooks, 2009). 8 Palliative home care services in B.C. have received criticism for their policies that promote inequitable access to BCPCB, and its associated resources, for B.C. residents (Crooks et al., 2011). Eligibility criteria outlined by BCPCB registration requires service users to agree to forgo curative treatment options (Fishman et al., 2009). These eligibility criteria place service users with life-limiting illnesses in a difficult position of having to make a choice between continuing active treatments and accessing BCPCB services5 (Fishman et al., 2009). Research has suggested that cultural and religious values can profoundly influence the decision of service users to continue or forgo treatment, which can result in barriers to timely palliative care service utilization in specific populations (Fishman et al., 2009). Prognostication by physicians is another significant factor that is operating to determine eligibility for BCPCB (British Columbia Ministry of Health, 2021). General practitioners are the primary physicians who complete BCPCB registration for B.C. residents. (British Columbia Ministry of Health, 2021). Prognostication requires a comprehensive assessment of the client which can be challenging for general practitioners: many clients with life-limiting illnesses are too weak to attend clinic appointments and general practitioners generally do not have the capacity to make home visits for client assessments due to time and fiscal constraints (McCallan & Daudt, 2021). Without the opportunity to conduct a thorough assessment, some general practitioners will rely on telephone assessments with the client or reports from the client’s family to determine BCPCB eligibility which can lead to inaccuracies in assessment (McCallan & Daudt, 2021). Other general practitioners will defer BCPCB registration to another physician who has been more actively involved with the client, which is most often an oncologist 5 BCPCB services include financial coverage of medications for symptom management; coverage of medical equipment in the home; and coverage of the cost of home support services (i.e. personal care assistance provided by a care aid in the home). 9 (McCallan & Daudt, 2021). This tendency to defer to another physician has contributed to both role confusion for general practitioners in the palliative domain; and the trend of individuals with cancer having greater access to BCPCB than individuals with non-malignant diagnoses (Fitzsimons et al., 2007; McCallan & Daudt, 2021). Even with the opportunity for adequate assessment, prognostication has been deemed problematic as it requires a reliance on the subjective assessment findings of the assessor (White et al., 2016). People with chronic, life-threatening illnesses are living longer than ever before: the course of their illness and time of their death is extremely variable as there is a wide range of illness progressions between differing life limiting diagnoses and among individuals (Lau et al., 2009; White et al., 2016). Even with the use of standardized prognostication tools, like the Palliative Performance scale (PPS) or Supportive and Palliative Care Indicators Tool (SPICT), physician prognostication has shown to be extremely diverse between providers due to the reliance on subjective interpretation to calculate what cannot be objectively predicted (British Columbia Ministry of Health, 2015; Higginson et al., 2011). Other influences, such as physician bias, knowledge, experience, education, and values impact the assessment for eligibility for BCPCB and the subsequent care provided (Frey, Powell & Gott, 2013). Physicians who habitually organise their knowledge and perceptions of clinical reality through a bio-medical approach can view death negatively or as a medical failure, which could potentially affect timely registration for BCPCB for appropriate service users (Frey, Powell & Gott, 2013). The influence of biomedicalization6 on BCPCB eligibility therefore extends beyond physician assessment and service user choices and is also apparent in how Home and 6 Biomedicalization is the process by which human conditions and problems come to be defined and treated as medical conditions, and thus become the subject of medical study, diagnosis, prevention, or treatment. Biomedicalization can be driven by new evidence or hypotheses about conditions; by changing social attitudes or economic considerations; or by the development of new medications or treatments. 10 Community Care policies specify the number of resources that eligible service users of BCPCB can access (Florani & Schramm, 2012). With the biomedical emphasis on diagnosis and treatment of dysfunctions, palliative care providers are focused on the ‘surveillance and control of the process of dying’ (Florani & Schramm, 2012; Rioux & Daly, 2019). Framing life limiting-illness as an empirical field of professional knowledge and expertise leads to medical professionals being put in the role of gatekeeper (Rioux & Daly, 2019). In this role, access to BCPCB and its associated resources is assessed by determining a person’s needs and provision of resources based on criteria evaluating their range of physical disability and illness burden (Florani & Schramm, 2012; Rioux & Daly, 2019). However, this approach is entirely empirical and does not account for structural inequities that could impact health, well-being, and prognosis, such as income, social status, housing, education, physical environments, coping skills, and social support networks (Florani & Schramm, 2012). Assessment through observation also does not capture the service user experience - this requires entering the patient’s psyche, history, culture, beliefs, and social relations, and interpreting the meaning of what the person has lived or is living through (Mino & Lert, 2005). When medical practitioners are positioned as gatekeepers to BCPCB and its associated resources, biomedical and functional approaches to illness are privileged in palliative care policies, programs, and services, and little power is left for service users to determine when and how to access palliative care services at home (Rioux & Daly, 2019). The rise of neoliberalism7 has also influenced BCPCB and Home and Community Care policies in B.C. resulting in embedded health inequities (Bryant, 2019). Policy is a course of action anchored in a set of values regarding appropriate public goals and beliefs about the best 7 Neoliberalism is a political approach that favors free-market capitalism, deregulation, and reduction in government spending. 11 way of achieving those goals (Bryant, 2019). Government ideology is a significant determinant of the generosity of social spending (Bryant, 2019). Canada has a residual approach to social welfare and service provision where responsibility for well-being falls largely on individuals (Bryant, 2019). The neo-liberal discourse emphasizes individual responsibility and private action; debt and deficit reduction over social expenditure; and a shift from universal provision based on shared rights and pooled risk, to the provision of services based on individual needs, with implications for concepts of citizenship and entitlement (Rioux & Daly, 2019). This residual approach to social welfare has been found to result in considerable income, social and health disparities among the Canadian population at end of life which illustrates how spending on health and social programs ultimately determines citizens’ health and well-being (Bryant, 2019). The BCPCB policy has undergone evaluation by the Ministry of Health on seven occasions since its inception in December 2001 (British Columbia Ministry of Health, 2015). These policy reviews focused primarily on re-defining service-user eligibility based on physician feedback (British Columbia Ministry of Health, 2015). The most recent revisions to the policy occurred in 2015, and included a requirement to reassess client eligibility for BCPCB every 12 months8; a change in the BCPCB registration form that now includes a section for discontinuing benefits for a client who is no longer considered eligible; and the Palliative Performance Scale (PPS) has been replaced by the Supportive and Palliative Care Indicators Tool (SPICT™) to assess a client’s prognosis9 (British Columbia Ministry of Health, 2015). These policy revisions 8 Reassessment is for service users that have already been deemed eligible for BCPCB. These service users are reassessed every 12 months to ensure they still meet the eligibility for BCPCB or their benefits will be revoked. 9 Murray et al. (2005) and Lau et al. (2009) found that the PPS was not reliable or valid for assessing prognosis among patients with differing ages, genders, and illness trajectories. The SPICT replaced the PPS for determining prognosis because it incorporated holistic factors beyond diagnosis, ambulation/activity, and symptoms. Currently, the SPICT has not been studied for its reliability or validity for determining prognosis in a Canadian context. 12 were intended to ensure that BCPCB is being utilized by the B.C. residents of greatest need, however this has granted even more authority for physicians to withhold or revoke BCPCB services from individuals living with life- limiting illnesses based on eligibility criteria (British Columbia Ministry of Health, 2015). The rationale for the SPICT replacement for prognosis assessment is that it offers a more accurate means of assessing clients as it applies to both malignant and non-malignant conditions (British Columbia Ministry of Health, 2015). Although the SPICT offers a more holistic assessment process for determining prognosis and B.C. resident eligibility for BCPCB, the policy revisions for BCPCB from the Ministry of Health are incomplete as they do not consider the perspectives of BC residents; individuals living with life limiting-illnesses; nurses; or other allied health staff (British Columbia Ministry of Health, 2015). BCPCB and the Home and Community Care Policy manual: Home health services operate in community settings through implementation by healthcare practitioners, including physicians and nurses (British Columbia Ministry of Health, 2015). Since nurses provide most of the direct care and contact with people receiving services through BCPCB, they are in a unique position to advocate for service user health equity through promotion of self-determination and autonomy (Oudshoorn, Ward-Griffin & McWilliam, 2007). Resistance to inequitable health care access surrounding life-limiting illness can be supported by nurses’ awareness of the discriminatory discourses and assumptions embedded within BCPCB, including the Home and Community Care policy manual: Home health services. Such awareness could further support nurses’ contributions to the upcoming revisions of the Framework for Palliative Care in Canada Act (Health Canada, 2017). 13 The current response to supporting individuals with life-limiting illnesses is inadequate for sustaining the agency and well-being of many people in BC; however, it has remained unclear how discourses employed by BCPCB and the Home and community care policy manual: Home Health services sustain discriminatory power relations, maintaining inequity for people with differing life-limiting illnesses. While research has addressed problematic aspects of palliative care legislation in BC, a discourse analysis of BCPCB, including the Policy Manual, has not yet been conducted. A critical discourse analysis of both the BCPCB and the Policy Manual can surface how discourse potentially operates to position service users in a subordinate role while also surfacing the implications of this positioning. Critically analyzing discourses constructed and reproduced within BCPCB and the Policy Manual can make visible how the power relations are created through policy texts and make explicit what and whose interests are served (Ministry of Health, 2005). This study aimed to analyze how specific discourses affect service users and their access to BCPCB and its associated resources, as well as how those same discourses shape nursing practice in BC. This study will inform palliative care policy reform by providing discursive alternatives to those currently enacted through BCPCB with the goal to: (1) illuminate broader political and economic factors that influence BCPCB and Home and Community Care policy development and implementation (2) and contribute to developing policy actions that can improve population health and reduce inequalities in health for service users who are living with life-limiting illnesses (Bryant, 2019). 14 Research Questions This analysis will seek to examine the following questions: 1. How do British Columbia’s Palliative Care Benefit (BCPCB) program and Home and Community Care policies construct eligibility and allocation of associated resources for service users? 2. What and whose interests are served by British Columbia’s Palliative Care Benefits program and the allocation of its associated resources? 3. What are the implications of the current British Columbia Palliative Care Benefit program and Home and Community Care policies for nursing practice in BC? Thesis Outline This chapter has provided context for the study by presenting issues related to BCPCB eligibility and a related background regarding palliative care policies; explaining the intersections between discourse and life-limiting illness; reasons for undertaking the study; and presenting the research questions. Chapter two describes and justifies the theoretical framework and methodological approach utilized for the study; the methodological tool used to operationalize the study alongside ethical considerations; and the limitations of the study. Chapter three provides a critical overview of the socio-historic context of palliative care and life-limiting illness and analyzes and discusses discourses within the BCPCB policy and the Home and community care policy manual: Home health services. Analyses of the eligibility criteria texts figures centrally, including an analysis of how eligibility is determined and by whom and how. Service users are constructed and positioned. Chapter four explores the implications of the specific construction of eligibility utilized by BCPCB and the Policy Manual for service users 15 and nursing practice. Chapter five concludes the study and provides recommendations and conclusions. 16 Chapter 2: Theoretical Framework and Methodology The biomedicalization of life-limiting illness prognostication determines BCPCB eligibility and discursively shapes agreeance to receive palliative services at home that focus on comfort over curative treatment (British Columbia Ministry of Health, 2021). Physicians and palliative care nurses’ everyday practice is shaped by the structural factors that include the surveillance of the process of dying (Rioux & Daly, 2019). For example, palliative home care nurses are engaged in the act of surveillance through direct observation of the service user, and ongoing assessment, planning, implementation, and evaluation of nursing interventions that primarily focus on service user level of physical function and illness progression (Oudshoorn, Ward-Griffin & McWilliam, 2007). Explicit exercising of power within the palliative care context is also found through physician assessment of eligibility and registration for BCPCB (Fitzsimons et al., 2007). Critical Social Theory (CST) will provide a theoretical foundation to support the critique of power relations and domination through the critical analysis of discursive texts within the Ministry of Health policies that determine eligibility for BCPCB and the allocation of associated BCPCB resources to eligible service users (Fairclough, 2012). Within the social world, discourses operate to construct and influence identity, relationships, and systems of knowledge (Fairclough, 1992). Critical Social Theory provides a theoretical foundation that supports the critique of power relations and domination through the critical analysis of discourse (Fairclough, Mulderrig & Wodak, 2011). A CST informed approach to discourse sees communication as actively constructing, reproducing, reflecting, and transforming society through ideology and power relations, while also locating these discourses within the social and historical context (Fairclough, Mulderrig, & Wodak, 2011). Critical Discourse Analysis (CDA) is highly influenced by CST and is defined as a theory that analyzes 17 and exposes structural relationships of dominance, discrimination, power, and control as manifested in language (Fairclough, 1992). In other words, CST assists CDA to explore and expose how the structural context of oppression, dominance, and inequality are enacted and reproduced through textual features within a social and political context (Evans-Agnew, Johnson, Liu, & Boutain, 2016). CDA will primarily guide the analysis with CST supporting the exploration of the structural context of oppression, dominance and inequality embedded in eligibility criteria and associated resource allocation for BCPCB (Fairclough, 2003). Foucault’s (1977) theoretical framework about the inseparability of power and knowledge in discourse will also support the CDA for this study. Foucault's (1977) framework primarily addresses the relationship between power and knowledge and how both together act as a form of social control through societal institutions and ideology. Foucault (1977) suggests that institutions organize knowledge-producing communities and thereby shape the production of discourse and knowledge, all of which is framed by ideology. If ideology is defined as a worldview, then a person’s worldview reflects their experience and their socioeconomic position in society (Foucault, 1977). It follows, then, that ideology influences the formation of institutions and the kinds of discourses that institutions create and distribute (Foucault, 1977). Discourse and ideology work in tandem to influence social action through communicative practices (Purvis & Hunt, 1993). Discourse focuses upon the internal features of those practices, in particular the linguistic and semiotic dimensions (Purvis & Hunt, 1993). Ideology directs attention towards external aspects of communication practices by focusing on the way in which lived experience is connected to notions of interest, position, and power (Purvis & Hunt, 1993). Therefore, if ideology is a worldview, discourse is how we organize and express that worldview in thought and language (Foucault, 1977). Thus, institutions hold power to produce knowledge and 18 ideology that shapes discourse, and, once discourse is infused throughout society, it, in turn, influences the reproduction of ideology (Purvis & Hunt, 1993). This theoretical framework and empirical analysis method from Foucault (1977) will be utilized to bring to light historical and modern forms of power (e.g., disciplinary power in health care systems) and how these emerged in language to influence palliative care policies. Foucault’s theoretical framework will also underpin the conceptualization of individuals and subjectivity in this study (McNay, 2009). Foucault describes the creation of individuals as “subjects” and the concept of subjectivity as a social construction created by power, rather than a natural or objective state (McNay, 2009). Foucault does not identify subjectivity or social norms as either "good" or "bad" since they are all a result of power relations (Palacios, 2018). Foucault claims it is impossible to go beyond power relations and that all norms and social institutions are simultaneously enabling as they are oppressing (Palacios, 2018). Therefore, Foucault argues that only by practicing “critique” can we discover how peoples current state of being is historically contingent, unstable, and a changeable construction (Flew, 2012). Critique is a practice that searches for the processes and events that led to our way of being—a questioning of who we "are" and how this "we" came to be (Flew, 2012). Foucault emphasizes that since the current way of being is not a necessity, it is also possible to change it (Garrett, 2019). Foucault’s critique will be utilized in this study to investigate how and when people are being enabled and when they are being oppressed by the current norms and institutions surrounding BCPCB and allocation of its associated resources, while also finding ways to reduce limitations on freedom, resist normalization, and develop new and different ways of relating to oneself and others to shift current dominant power relations in palliative care to become more equitable. 19 This study’s CDA can contribute to the nursing profession’s efforts to both resist and shift dominant understandings of people living with life-limiting illness, including the process of and reliance on prognostication and biomedical/ableist assessment practices for BCPCB eligibility and allocation of associated resources (Rioux & Daly, 2019). Through CDA, it is possible to see how health policies encompass more than prescriptive texts: rather, such texts can be analyzed for how they sustain and reflect values and discourses legitimizing relations of power (Fiske & Browne, 2008). Informed by CST and a Foucauldian theoretical framework, this CDA can help surface taken for granted discourses in palliative care as well as the social and ideological structures that incite inequitable power relations for people living with life-limiting illness (Foucault, 1977; Fairclough, 2003). The aim of this CDA is to contribute to the reform of Home and Community Care policies and BCPCB eligibility by seeking alternatives that maximize a holistic palliative approach and considers the autonomy and dignity for service users experiencing life-limiting illness in the context of systemic health inequities. Methods and Data Analysis Fairclough’s (2009) Dialectical–Relational CDA was used to frame the methodology. Dialectical-Relational CDA sees relations among varying elements (such as power, values, and beliefs) as dialectical, meaning different yet inseparable (Fairclough, 2009). The four stages of Dialectical-Relational CDA proposed by Fairclough (2009) were utilized in an iterative research process for data collection and analysis for this research. Stage 1 focused on selection of a research topic that identifies a social wrong as well as the construction of objects of research through trans-disciplinary theorizing (Fairclough, 2009). Stage 2 includes identification of obstacles that could challenge the ability to address the social wrong (Fairclough, 2009). Obstacles were identified through the analysis of dialectical relations between semiosis, texts, 20 and other social elements, including influences from medical paternalism10, biomedicalism11, neoliberalism, postcolonialism12, and ableism13 (Crooks et al., 2011; Fairclough, 2009). Appropriate texts were also selected in this stage and categorized for analysis (Fairclough, 2009). Stage 3 involved both interdiscursive and linguistic/semiotic analysis of texts (Fairclough, 2009). Finally, Stage 4 involved the identification of possible ways past the obstacles presented (Fairclough, 2009). Although the Dialectical-Relational CDA is outlined in a sequential manner, Fairclough (2013) indicates that CDA is an iterative research process when analyzing discourse. Each of these steps is outlined in relation to the research topic in further detail below. Stage 1: Focus upon a social wrong, in its semiotic aspects. BCPCB is positioned as an authoritative text for determining eligibility and access to associated resources for B.C. residents living with life-limiting illness (British Columbia Ministry of Health, 2021). BCPCB outlines the assessment criteria that determines eligibility of service users and directs the decision making of physicians towards granting access to subsidized services for people living with life-limiting illness (British Columbia Ministry of Health, 2021). Essentially, BCPCB authorizes social actors (physicians) to act as gatekeepers to subsidized palliative care services for B.C. residents who fulfill predetermined criteria (Oudshoorn, Ward-Griffin & McWilliam, 2007). Debates concerning accessibility to palliative care services and resources typically pertain to issues of physician prognostication; access to primary health care services; and obligatory adherence to comfort care goals (Oudshoorn, Ward-Griffin & 10 Medical paternalism is a type of medical decision making in which health care professionals exercise unilateral authority over patients. 11 Biomedicalism is the orientation of medicine that deals with the application of the biological sciences to the understanding, treatment, and prevention of disease. Biomedicalism assumes that health is independent of the sociocultural setting in which it occurs, and that the health system is socially and politically neutral. 12 Postcolonialism is a theoretical approach that is concerned with the lasting impact of colonization in former colonies. 13 Ableism is discrimination and social prejudice against people with physical or mental disabilities. 21 McWilliam, 2007). The last comprehensive, systemic review of BCPCB occurred in 2015 and this review did not incorporate the views of service users or nurses when identifying concerns of accessibility to palliative care services (British Columbia Ministry of Health, 2015). The social wrong that is the focus of this thesis is the manner in which BCPCB and the Policy Manual removes self-determination from service users by granting unequivocal power to social actors who already occupy dominant social positions, such as physicians, and nurses. Thus, analysis shows how BCPCB and the Policy Manual exert power in the direction of dominant and discriminatory relations of power that deepens social inequity. This social wrong was approached in a trans-disciplinary manner incorporating aspects of palliative care, nursing, sociology, and philosophy. The incorporation of palliative care offered the examination of current dominant palliative care practices, such as the prognostication process and the medicalization of dying. Nursing and nursing theory provided insight into the dissonance between physical and functional assessment practices formalized by BCPCB and the Policy Manual, and that of holistic palliative care nursing practice. Mills (1956) sociological theory of the power-elite provided a structural level analysis of the manner in which BCPCB and the Policy Manual affects or engages with social relationships, power dynamics and institutions (Mills, 1956). Finally, Gergen’s (1973) theory of socially constructed knowledge from the discipline of philosophy assisted with the analysis of how reality, identity, and meaning in relation to palliative care and life-limiting illness were constructed through the analysis. Stage 2: Identify obstacles to addressing the social wrong. Within this stage, obstacles were identified in dominant discourses within the BCPCB program and the Home and Community Care Policy Manual and further explored. Obstacles include the social and historical influences towards the conceptualization of palliative care, 22 biomedicalism, medical authority, ableism, and the positioning of people with life-limiting illness alongside the history of colonization and increasing neoliberal orientations of the Canadian government (Ashcroft, Griffiths & Tiffin, 2013). I also analyzed how palliative care services and palliative home care nursing practice are organized, and I argue that the way they are organized acts as a barrier to both revealing and addressing the social wrong. In this stage of analysis, I critiqued and deconstructed the biomedical justifications for eligibility to BCPCB as well as the physical deficit assessment practices within the Policy Manual that act discursively to determine how resources are allocated to service users within the BCPCB program. Step 1: Analyze dialectical relations between semiosis and other social elements: between orders of discourse and other elements of social practices, between texts and other elements of events. I examined the complex relationship between socio-historic discourses and their influence on BCPCB and the Policy Manual; I then further analyzed these discourses to examine their ideological effects, specifically looking at how they position service users in a subordinate role and shape nursing practice. I also drew upon the Code of Ethics for Registered Nurses (Canadian Nursing Association, 2017) to highlight discrepancies and tensions between professional obligations under the Home and Community care policy manual and ethical palliative care nursing practice. Step 2: Select texts, and points of focus and categories for their analysis, in the light of and appropriate to the constitution of the object of research. A textual analysis of selected chapters and sections from the BC Ministry of Health’s Home and Community Care Policy Manual (2013; 2019) was undertaken – outlined in Table 1. 23 Sections relating to eligibility for BCBPB were also analyzed (British Columbia Ministry of Health, 2018). These texts were analyzed using Fairclough’s (2009) Dialectical-Relational CDA and were selected based on their authority and influence over accessibility to BCPCB and its associated resources (British Columbia Ministry of Health, 2015). These texts were created by the British Columbia Ministry of Health (2015) to outline specific eligibility criteria that directs the decision making of both physicians and registered nurses to either grant or deny B.C. service users access to subsidized resources within the BCPCB program. The B.C. Ministry of Health’s (2015) British Columbia Palliative Benefits Registration policy was chosen for analysis because it exerts power; it is the primary document used to interpret and determine eligibility for BCPCB for B.C. residents. The B.C. Ministry of Health’s (2013; 2019) Home and community care policy manual: Home health services was also data included in the analysis because it is also the primary document used to interpret, implement, and allocate BCPCB resources into practice for registered nurses, and into the lives of service users and their families. Relevant and seminal scholarly articles, as well as grey literature from the B.C. Ministry of Health’s library, that define BCPCB eligibility, implementation, resource allocation, and evaluation of these policies were also included. 24 Table 1: Home and Community Care Policy Manual Chapters and Sections Home and Community Care Policy Manual Chapters and Sections Chapter 2 Client Access Section A General Description and Definitions Chapter 2 Client Access Section B Eligibility Chapter 2 Client Access Section C Referral and Intake Chapter 2 Client Access Section D Assessment Chapter 4 Home Health Services Section B Subsection 1 Service Needs Determination Chapter 4 Home Health Services Section B Subsection 2 Access to Services Chapter 4 Home Health Services Section D Community Nursing Services Chapter 4 Home Health Services Section G Palliative Care Benefits: Medical Supplies and Equipment Step 3: Carry out analysis of texts, both interdiscursive analysis, and linguistic/semiotic analysis. The analysis focused on dominant discourses of eligibility. CDA of eligibility discourses led to further inquiry into BCPCB and the Policy Manual for how biomedicalism, paternalism, neoliberalism, colonialism, and ableism exerted power. Within this step, I analyzed the selected BCPCB program eligibility policy and related sections in the Home and Community Care Policy Manual forms (as outlined in the methods and data analysis section) to identify how they discursively shaped the roles of physicians and palliative home care nurses in determining eligibility to the program that is the access point for associated resources (British Columbia Ministry of Health, 2013; 2018). Furthermore, I analyzed how service users are constructed in 25 these texts. The CDA was completed by deconstructing text utilized by BCPCB and the Policy Manual underlying meanings and dominant values exerting power. Stage 3: Consider whether the social order ‘needs’ the social wrong. In this stage, I explored how the current social order (physicians and palliative home care nurses determine eligibility to BCPCB and its associated resources) ‘needs’14 the social wrong (the manner in which BCPCB and the Policy Manual incite dominant and discriminatory relations of power) (Fairclough, 2009). I analyzed how biomedical and ableist practices in palliative care are mechanisms used to legitimize and preserve social inequities and dominant power relations – as formalized by the BC Ministry of Health policies. Stage 4: Identify possible ways past the obstacles. From the CDA, I presented and discussed alternatives to disrupt the current, seemingly immutable, structures. In this stage, I examined how the current social order can evolve to ensure the safeguarding of personal rights through promotion of self-determination and dignity, thereby helping to mitigate the use of healthcare provider gatekeeping. I explored how nurses can maintain the ethical obligation to promote and maintain self-determination for people living with life-limiting illness, including the need to create and advocate for more equitable palliative care policies in BC. I discussed ways to dismantle the obstacles that have ideological power that keep inequitable and discriminatory power relations reified in place to better align the BCPCB and the Policy Manual with The Charter of Rights and Freedoms (1982). I also explored how discourses 14 How does the social order ‘need’ the social wrong in order to operate. At this stage, it is considered whether the social wrong in focus is inherent to the social order and to see whether the social wrong can be addressed within it, or only by changing the social order. It is a way of linking ‘is’ to ‘ought’: if a social order can be shown to inherently give rise to major social wrongs, that is a reason for thinking that perhaps it should be changed. 26 of equity and equity-oriented practice can act as discursive alternatives to current conceptualizations and approaches to palliative care services. Ethical Considerations and Limitations There was no human subject involvement in this research. No participants were interviewed or observed through the course of this research study. In this thesis, publicly available texts were analyzed, therefore application to and approval from UBC’s Behavioural Research and Ethics Board was not necessary for the completion of this thesis. Due to my exposure to BCPCB and the Home and Community Care Policy Manual through nursing practice and education, my analysis is neither value-neutral nor ‘objective’. In utilizing CDA, I take an explicit ideological stance against inequity, discrimination, and abuse of power. This CDA of BCPCB and the Policy Manual is focused on how discourse produces and reproduces inequity and discrimination, which is inherently political (Fairclough, Mulderrig & Wodak, 2011). According to CST, this is not deemed a limitation since power relations are inherent in every aspect of society, with no possibility of true objectivity or distancing from these power relations (Fairclough, 2012). Rather than being deemed a limitation, CST guides researchers to identify their positions of power, rather than proceeding as if one can be power-neutral or ‘objective’ during processes of data collection and analysis (Fairclough, Mulderrig & Wodak, 2011). CDA does not provide absolute answers to the problems identified. However, research that integrates CDA has the potential to challenge and assist the transformation of current practices, policies and legislation that may be reinforcing or contributing to inequity (Fairclough, 2012). CDA is highly variable depending on the specific research design and approach; 27 therefore, CDA findings can always be open to negotiation and interpretation (Breeze, 2011). Nevertheless, the findings can be utilized in assisting with the discursive analysis of health policies or practice texts influenced by BCPCB and the Policy Manual within BC and, therefore may have relevance to CDA findings of other studies. 28 Chapter 3: Discourses of Eligibility in BC Palliative Care Policies Due to my experiences working as a palliative home care nurse, I felt compelled to dive deeply into the history and context of palliative care in B.C. This exploration was intended to uncover the socio-historical and cultural factors that influence Canadian society’s perception of death and how this impacts our policies and our health system in the care of individuals at end-of-life. In practice, I have witnessed the negative effects that the medicalization of death has had on patient dignity and quality of life. I have also seen the social stigma that afflicts dying individuals and how this profoundly isolates them from society and even their families. By exploring the history and context, my goal was to come to a greater understanding of how BCPCB and the Policy Manual were constructed, and how changes can be made to the policies to benefit the quality of life and dignity of all B.C. service users at the end of their lives. Conceptualizations of life-limiting illness and hospice palliative care are enmeshed within the culture histories and societies in which they occur and are therefore inextricably bound to the political concerns, norms, and values of the specificities of place, culture, and society (Roberts, 2005). A brief historical overview of hospice palliative care is provided to set the context for interpreting the shifts and trends in palliative care and socio-cultural understandings of life-limiting illness in Canada. This overview provides context to BCPCB and the current approaches to determining eligibility and allocation of associated resources. This chapter will address the first and second research questions: (1) how do British Columbia’s Palliative Care Benefit (BCPCB) program and Home and Community Care policies construct eligibility and allocation of associated resources for service users? (2) and what and whose interests are served by British Columbia’s Palliative Care Benefits program and the allocation of its associated resources? Prior 29 to addressing these two research questions, the history and context of palliative care in Canada will be explored to ground the analysis and interpret the findings15. Palliative Care in Canada - History and Context The progression of hospice palliative care from its unorganized origins to its current complex, interdisciplinary approach mirrors the development of health care in society over the past thousand years (Mission Hospice, 2018). Although individuals and cultures have long been preoccupied with circumstances after death, devotion to the care of the dying has only recently gained consistent attention in Canadian health care (Mission Hospice, 2018). In the West, thoughts and attitudes about death have been influenced by Greek and Latin roots and then by Christianity, Medieval schools of thought, Enlightenment, and Modernity (Aries, 1975). Philippe Aries (1975) describes four consecutive periods through which these attitudes towards death in Western culture have evolved and transformed, including (1) death as an integral part of daily life (2) the personalization of death (3) mourning for the dead (4) and the avoidance and medicalization of death. The conditions of life and death remained largely unchanged in Canada into the 20th century (Risse & Balboni, 2012). Death remained an integral part of daily life: epidemics, war, accidents, infection, and childbirth claimed the vast majority of Canadians’ lives (Curtis & Mcgee, 2000). In the mid-19th century, industrialization transformed Canadian society and led to rapid urban population growth (Hetzler & Dugdale, 2018). The lack of adequate sanitation, sewage disposal systems, and clean water supplies enabled the quick spread of infectious diseases in large urban areas (Hetzler & Dugdale, 2018). Prior to the discovery of antibiotics, 15 The discussion of the history and context of palliative care in Canada also generates findings for the CDA that supports the interpretation of the analysis for this thesis. 30 there were virtually no curative treatments available for serious illness and infection (Risse & Balboni, 2012). By 1900, the number of hospitals in Canada was growing but the majority of them provided care primarily for the urban poor and served as training grounds for physicians and nurses (Hetzler & Dugdale, 2018). By the 1930s, medical advances (such as immunization and antibiotics) and public health efforts had resulted in the reduction of deaths from infectious diseases and a shift from infection to chronic illnesses as the number one cause of death (Hetzler & Dugdale, 2018). Apart from deaths as a result of war and accidents, most people in this period died at home and were cared for by family members and friends (Aries, 1975). Death was frequently a community event, with extended family, friends and neighbours attending to the dying person and then participating in rituals of visiting the family as the body lay at rest (Aries, 1975). As a result, death was a part of daily life for adults and children alike (McCue, 1995). The period of sustained economic prosperity that followed World War II led to dramatic changes in life and death in Canada (Vatovec, Senier & Mayerfeld Bell, 2013). As government resources grew, so too did public funding for health care (Vatovec, Senier & Mayerfeld Bell, 2013). The passage of the Hospital Insurance and Diagnostic Services Act in 1957 provided publicly funded hospital coverage and the Medical Care Act of 1966 extended coverage to include physicians’ services (Vantovec, Senier & Mayerfeld Bell, 2013). Thus, citizens were able to secure a range of services for themselves and their families, and the use of hospitals for a range of routine procedures increased exponentially (Vantovec, Senier & Mayerfeld Bell, 2013). By 1950, the location of both birth and death had shifted from home to hospital in Canada (Vatovec, Senier & Mayerfeld Bell, 2013). Both the public and the medical profession were coming to believe in the powers of science and medicine to control and cure illness 31 (McCue, 1995). Science became the new source of power and hope, replacing religion as the source of knowledge and power (McCue, 1995). This period was characterized by tremendous population growth, as well as large scale expansion of hospitals, increased use of physicians’ services and a host of significant medical breakthroughs, such as immunization for diphtheria, tetanus, pertussis and smallpox; widespread use of antibiotics; surgical innovations; and growth of specialties offering cures and treatments (Risse & Balboni, 2012). Bolstered by advances in medical science, physicians and nurses focused increasingly on curative measures which lead to death to be seen as a medical failure (Risse & Balboni, 2012). This final shift in attitudes towards death in Western culture was the beginning of the medicalization of dying (Aries, 1975; Hetzler & Dugdale, 2018). Medicalized dying refers to when the dying process is facilitated or prolonged by medical intervention (Hetzler & Dugdale, 2018). Management of near-death patients came to be focused almost exclusively on arresting or reversing their near fatal conditions in harmony with the basic disease orientation of biomedicine (McCue, 1995; Risse & Balboni, 2012). It enabled patients, their families, and physicians to delay death without necessarily promoting the health and healing of patients (Hetzler & Dugdale, 2018). Despite their apparent futility, deathbed rituals in modern hospitals came to include specialized consultations and intensive care units with their aggressive employment of medications and technology, including sophisticated resuscitation techniques (McCue, 1995; Clark & Graham, 2011; Risse & Balboni, 2012). By waging a relentless war on serious disease and multiple organ failures, hospitals sought doggedly to prolong life regardless of cost (Risse & Balboni, 2012). Western society was fixated on cure rather than a peaceful death which led to increased funding for hospital research and helped nurture a national psychology in which death 32 was an unacceptable outcome that should be prevented at all costs (Clark & Graham, 2011; Risse & Balboni, 2012). In response to the medicalization of hospitals, development of hospice and palliative care in Canada began in the 1970s (Canadian Hospice and Palliative Care Association, 2023). Modern hospices trace their origins to Dame Cicely Saunders, a pioneering physician and founder of St. Christopher’s House in London, England in 1967 (Clark & Graham, 2011). Dr. Saunders played the predominant role in forming the tenets used in hospices worldwide, including (1) the concept of “total pain,” including physical, spiritual, and psychological discomfort; (2) the proper use of opioids for patients with physical pain; and (3) attention to the needs of family members and friends who provide care for the dying (Clark, 1999). Within a decade, it was accepted that the principles of hospice care could be practised in many settings, such as in specialist in-patient units, but also in home care and day-care services (Clark, 1999). Hospital units and support teams were established that brought the new thinking about dying into the heartland of acute medicine (Clark, 1999). The hospice and palliative care movements in Canada reflected both staggering economic concerns from overutilization of medicines and technology and a frustration toward hospitals that provided poor quality care to terminally ill patients (Risse & Balboni, 2012). This displacement of the dying from the home to hospitals first met with criticism in the late 1960s with landmark studies that exposed the social isolation, anxiety, mistrust of staff, and withholding of terminal diagnoses that dying patients often experienced in hospitals (Vantovec, Senier & Mayefeld Bell, 2013). Inspired by the work of Saunders, Dr. Balfour Mount, a urologist and surgical oncologist, piloted a study of the needs of dying patients at the Royal Victoria Hospital in Montreal (Vantovec, Senier & Mayefeld Bell, 2013). Appalled by the suffering he and his team found, 33 Mount established a hospice-like ward within the hospital to relieve suffering and provide quality end-of-life care (Vantovec, Senier & Mayefeld Bell, 2013). Dr. Mount coined the term “palliative care” (soins palliatifs in French), dropping the word “hospice,” which, in Quebec, still carried the stigma as a place of last resort for the poor and derelict (Vantovec, Senier & Mayefeld Bell, 2013). More recently, end-of-life care has undergone criticism because the high cost of care does not change the outcome of disease: patients undergoing intensive medical interventions still die in the same amount of time and with lower quality of life than those who forgo such treatments (Vatovec, Senier & Mayerfeld Bell, 2013). As a result, palliative care programs have significantly increased within the past few decades (Risse & Balboni, 2012). Their growing popularity may be due to the financial burden of a technologically driven health care system and palliative care’s promised high-quality care and lower costs (Risse & Balboni, 2012). Neoliberal approaches were utilized by the Canadian government to address the ever-expanding health care budgets and ballooning deficits threatening all levels of government by the 1990s (Risse & Balboni, 2012). This resulted in communities across Canada experiencing the closure of hospital beds and of small community hospitals, and the merger and specialization of urban hospitals (Risse & Balboni, 2012). Shorter hospital stays, an increase in the number and range of outpatient procedures, and a move toward pharmaceutical treatments for mental illness, among others, had a dramatic impact on families (Risse & Balboni, 2012). In all areas of health care, deinstitutionalization effectively meant that patients were sent home or onto the streets (Risse & Balboni, 2012). The home was the place to care for family members, whether they were suffering from a terminal illness, recuperating from surgery or living with mental illness or a severe disability (Risse & Balboni, 2012). In the absence of adequate home care services and no 34 longer able to rely upon the support of an extended family or community network, families (and especially women in families) began to experience the crushing demands of caregiving (Risse & Balboni, 2012). Even with palliative care’s growth as a specialty in mainstream medical practice in Canada, most of the attempts to improve care of the dying are taking place within the jurisdiction of empiricism and biomedicine (Moller, 2018). Palliation is desirable, but it is also a form of re-medicalization (Moller, 2018). As a mode of re-medicalization, it is an incomplete response to the enormous suffering, psychosocial complexity, and the problem of meaninglessness faced by dying individuals and their families (Moller, 2018). Any attempt to refashion the modern ways of death must fully consider the role of the broader social forces of empiricism, biomedicalism, neoliberalism, individualism, postcolonialism, and spiritual yearning16 (Moller, 2018). Another shortcoming of the re-medicalization movement is the lack of critical analysis of the neoliberal values and ideologies driving the drift away from community and moral solidarity toward isolated individualism (Moller, 2018). As Western society developed economically, industrially, and politically, community and tradition began to lose their base of authority (Moller, 2018). Religion symbolically extends a person’s existence beyond their own death, but since religious and spiritual aspects surrounding death have been weakened, death has lost its spiritual meaning in modern society (Aries, 1974; Mellor, 1993). The result is that quests for meaning in the human experience of dying are increasingly divorced from a shared community base and instead are pursued by individuals independently of each other (Moller, 2018). Individuals with life-limiting illness must respond to these situations based on their personal 16 Spiritual yearning is a social force that refers to a person’s strong desire to connect to a higher purpose, belief or power beyond their human body and their physical surroundings. 35 resources and abilities (Moller, 2018). The result is increased alienation of individuals at end-of-life (Moller, 2018). Individuals with life-limiting illness are isolated from the qualities which are valued in neoliberal culture, including individual success measured through endless work and ostentatious consumption (McGregor, 2001; Moller, 2018). This has resulted in reduced self-esteem, self identity, and self-affirmation for individuals with life-limiting illness, as well as impacted their interconnections and interactions with others (McGregor, 2001; Moller, 2018). In the absence of culturally grounded meaning systems for suffering and pain, pain and suffering have become defined as clinical issues requiring medical management (Moller, 2018). In this way, the pain of dying is isolated from the web of social and cultural systems of meaning (Moller, 2018). When biomedicine fails to control the pain, individuals with life-limiting illness are left to face pain and associated suffering in an isolated and privatized world (Moller, 2018). While cultural reliance on the technological management of pain and suffering has positively contributed to reducing some of the physical agony of dying, it has simultaneously resulted in a heightening of emotional and social isolation of individuals with life-limiting illness (Moller, 2018). Within the context of current neoliberal society, with increased value placed on self-development and expression, dying is the ultimate decimator of the western pursuit of personal well-being (Mellor, 1993; Moller, 2018). Helplessness, vulnerability, despair, and physical devolution impact individuals with life-limiting illness in such a devastating way that profound social stigma and discrimination emerges (Mellor, 1993; Moller, 2018). Simms (2003) described how individuals who suffer with life-limiting illness receive second-rate services as compared to those suffering from acute conditions. Hospitals have been redefined as exclusively serving the acutely ill since the care of individuals with life-limiting illness is potentially costly and will not 36 result in full recovery (Simms, 2003). As well, many of these individuals have stopped working due to age or severity of their illness (Simms, 2003). As a result, they are defined as ‘economically unproductive’ and therefore socially dependent (Simms, 2003). Health care policy concerning individuals with life-limiting illness are increasingly differentiating between ‘social’ care and ‘health’ care (James, 1996). Since many individuals with life-limiting illness are identified as being primarily in need of social care, the question of who bears the responsibility for services to those suffering from long-term conditions in the community is not adequately addressed (Simms, 2003). Another consequence of privatizing palliative care is that individuals with life-limiting illness vanish from the public eye, often being confined within designated institutions or the private home, contributing to further detachment from ordinary life and thereby increasing social isolation (Mellor, 1993; Kang, 2021). As a result, social communication with individuals at end-of-life becomes limited to medical professionals and close family members (Kang, 2021). This is part of the underlying basis of social stigma of the dying, namely, the fact that personal and social death precedes biological death (Moller, 2018). Thus, the problem of meaninglessness asserts itself for individuals at end-of-life not just in an abstract, existential way, but in ways that have concrete, deleterious effects to their personal and social identity (Moller, 2018). Modern management through technological manipulation of the dying process suppresses and contains the tribulations of dying in a fashion that minimally disturbs and threatens the broader social world (Moller, 2018). In doing so, however, it increases suffering for individuals at end-of-life and their loved ones by intensifying their social isolation (Moller, 2018). Health care and social welfare restructuring continues to be profoundly influenced by increasing neoliberal orientations of the government and health authorities (McGregor, 2001). 37 Neoliberalism subscribes to principles of privatization, deregulation, decreased taxation, cost-effectiveness, and efficiency, valuing notions of social and economic self-sufficiency (McGregor, 2001). Ideologically, neoliberalism favours reduced government and social expenditure in relation to public programs such as health care and social assistance, placing direct responsibility on individuals for their health and health outcomes (Fassbender et al., 2005). In the early 20th century, the hospital became highlighted as an end-of-life institution that stands in contrast to the ideal of home that is represented as a non-institution and preferred place of death (Lang, 2019). A continued recognition that end-of-life care is expensive reinforces the pressure to de-institutionalize and privatize health care services provided to individuals with life-limiting illness, which is reflected in BCPCB and the Policy Manual (Fassbender et al., 2005). Resource scarcity discourse endorsed by neoliberal ideology further promotes dialogues of competition and deservedness, seeking to define who warrants access to health care, including the types of services made available (Fassbender et al., 2005). Neoliberal orientations divert attention away from addressing social and structural issues of access and inequity, emphasizing individual-level variables (such as: self-care practices, lifestyle, family and caregiver support, choice, and level of treatment engagement and/or ‘compliance’) (Fassbender et al., 2005). Neoliberal orientations to life-limiting illness, palliative care and legislation remain prevalent throughout Western liberal democracies today (Fassbender et al., 2005). This can be observed in health care policy directives that emphasize standardization while also limiting the options available to health care providers to take variability in needs and wishes among clients into consideration (Bjornsdottir, 2009). Postcolonial discourse is also evident in current Canadian palliative care legislation and social policy (Ashcroft, Griffiths & Tiffin, 2013). Considering the position of Foucault (2022), a 38 discourse is a strongly bounded area of social knowledge; a system of statements within which the world can be known. The key feature of this is that the world is not simply ‘there’ to be talked about; rather, it is through discourse itself that the world is brought into being (Foucault, 2022). It is also in such a discourse that speakers and hearers, writers and readers come to an understanding about themselves, their relationship to each other and their place in the world (Foucault, 2002). Foucault (2022) asserts that discourse is important, therefore, because it joins power and knowledge together; those who have power have control of what is known and the way it is known, and those who have such knowledge have power over those who do not. Foucault’s (2002) view of the role of discourse though is even wider, and more pervasive, since he argues that discourse is the crucial feature of modernity itself. The ‘will to truth’ came to dominate discourse in the modern era and statements were required to be either true or false; the crucial fact for postcolonial theory is that the ‘will to truth’ is linked to the ‘will to power’ in the same way that power and knowledge are linked (Foucault, 2022). The will of European nations to exercise dominant control over the world, which led to the growth of empires, was accompanied by a capacity to confirm European notions of utility, rationality, and discipline as truth (Ashcroft, Griffiths & Tiffin, 2013). All that can be included within the discourse thus become protected by the assertion of ‘truth’ (Foucault, 2022). Current health care policy discourse in Canada is underpinned by biomedical positivism (McGibbons et al., 2014). A cornerstone of biomedical positivism is empiricism – the claim that a priori facts and truths exist and that knowledge of these facts or truths may be developed from that which is directly observable (McGibbons et al.). Empiricism is especially problematic because choices about where and how to even look for ‘facts and truths’ are filtered through the lens of imperialist colonialism (McGibbons et al.). In relation to palliative care policy, discourse 39 is dominated by rationality, empiricism, and biomedicalism with medical professionals (i.e. physicians and nurses) holding the “will to truth” and therefore also holding the “will to power” in determining eligibility to subsidized palliative care services in the community. The Discursive Power of Biomedicine: Diagnosis and Prognostication by Physicians CST draws attention to assumptions of what is constructed and defined as normal, abnormal, and pathological (Canguilhem, 1991). Notions of normality and abnormality, including life-limiting illness, are socially and historically constructed which means these concepts are created through shared social understanding within a given time, and not seen as a consequence of individual variance (Walker, 2006). Life-limiting illnesses are discursively constituted as abnormal and pathological as they deem individuals with life-limiting illness as dysfunctional and socially dependent according to social values and norms of individualism, productivity, self-sufficiency, ability, and rationality (Moller, 2018). Moller (2018) suggests that life-limiting illness is judged as pathological, and medical discourse offers a set of beliefs and words that enable life-limiting illness to be understood and communicated through diagnosis and prognosis. During the rise of the Modern era in the 18th century, the events of the French and the American revolutions established a narrative of scientific discourse (Foucault, 2002). This discourse presented scientists as sages who would abolish sickness and resolve the problems of humanity (Foucault, 2002). By that cultural perception, 19th-century society replaced the scientifically discredited medieval clergy with medical doctors (Foucault, 2002). Clinical encounters were treated as occasions for scientific inquiry (Foucault, 2002). The doctor’s practice would consist of objectifying the body of the patient since the body was seen as separate and apart from a patient’s personal identity (Foucault, 2002). Because the object of analysis is 40 the disease and not the patient, symptoms were treated as clues to diagnosis, and patients were treated as repositories of disease (Foucault, 2002). In the treatment of illness, the intellectual and material structures of health care made possible the inspection, examination, and analysis of the human body by physicians (Foucault, 2002). This biological reductionism gave power of authority to doctors when they applied their medical gaze to the body of the patient, an interaction that allowed unparalleled medical understanding of patient and illness (Foucault, 2002). In turn, the cultural perception of the medical gaze was the doctor’s near-mystical capability to discover hidden truth (Foucault, 2002). Therefore, when the patient’s body entered the field of medicine, it also entered the field of power where the patient can be manipulated by the professional authority of the medical gaze (Foucault, 2002). With this level of power and authority, medical paternalism dominates clinical discourse for physicians (Clark & Graham, 2011). Physicians hold the power to diagnose life-limiting illness and determine prognosis (Clark & Graham, 2011). This medical paternalism was demonstrated during the 18th and 19th centuries as patients were often not even informed of their terminal condition by physicians (Clark & Graham, 2011). It wasn’t until the 1950s that a new view of dying began to emerge which helped refine ideas about the dying process and explore the extent to which patients should and did know about their terminal condition (Clark & Graham, 2011). Although a more active approach is taken by physicians today in the discussion of life-limiting illness with patients, current palliative care policies still grant power to physicians to determine eligibility and entitlement to BCPCB and its associated resources (Clark & Graham, 2011). 41 Current conceptualizations of the role of physicians are heavily influenced by the media and the medical profession itself (Hetzler & Dugdale, 2018). Biomedicalism presents physicians as lifesavers and rescuers which has contributed to physicians feeling ill prepared to discuss death and dying (Hetzler & Dugdale, 2018; Vantovec, Senier & Mayerfeld Bell, 2013). The medical education of student doctors, the professional activity and norms of medical work, along with the technologically based professional orientation of the profession, function to disengage dying as a human experience (Moller, 2018; Kang, 2021). There are a variety of means by which physicians transform the personal issues of dying into medicalized concerns (Moller, 2018). As a result, patients, families, and physicians often address difficult end-of-life decisions when it is too late—when patients are dying in the hospital and receiving useless interventions—in short, when death has become a medical crisis (Hetzler & Dugdale, 2018). These circumstances lead to inferior end-of-life decision making and contribute to a culture in which both physicians and patients are ill prepared for death (Hetzler & Dugdale, 2018). Effective end-of-life-care planning must begin with the identification of patients at risk of dying (Casale et al., 2020). Difficulties in identifying patients at risk of clinical deterioration or death by physicians has been recognised as one of the main barriers for palliative care development and integration in the community (Casale et al., 2020). In reference to BCPCB eligibility that requires physicians to certify that a patient may likely die within six months, physicians have reported that it is difficult to determine prognosis due to differing disease trajectories and individual client differences (Vantovec, Senier & Mayerfeld Bell, 2013). Physician estimates of patients' survival times have historically been inaccurate, with physicians 42 having often been overly optimistic in their predictions17 (Chiu et al., 2015). Prognostic models have been created to aid physicians in providing more accurate estimates, however they are still considered inaccurate and incomplete (Chiu et al., 2015). As a result, individuals who are diagnosed with a life-limiting illness that has a disease trajectory with a more rapid and predictable decline (e.g. cancer) will be more likely to be registered for BCPCB than individuals with a slower disease progression, (e.g. heart failure or COPD) (Vantovec, Senier, Mayerfeld Bell, 2013). This is a form of ableism18, where a diagnosis of one particular life-limiting illness more readily receives subsidized support over other life-limiting illnesses that are considered longer term, however these illnesses with longer prognoses can be just as debilitating (Chiu et al., 2015). Accurate prognoses are recognised as being of clinical importance for patients at all stages of the palliative care trajectory, from those recently referred to palliative care services to those patients approaching the end of life (White et al., 2016). Early palliative care interventions have proven to be effective in improving quality of life (Casale et al., 2020). Despite this, one study found that physicians find it difficult to see the value in transitioning a patient to palliative options unless the patient is actively dying (Vantovec, Senier & Mayerfeld Bell, 2013). In this study, physicians stated that the default pathway for goals of care is to seek life prolonging treatments (Vantovec, Senier & Mayerfeld Bell, 2013). To switch their attention from restorative 17 Chow et al’s (2005) study found that a group of radiation oncologists survival estimates for 739 patients were, on average, more than 3 months greater than actual survival time. 18 Ableism is discrimination and social prejudice against people with physical or mental disabilities (Chiu et al., 2015). Ableism characterizes people as they are defined by their disabilities. In the context of BCPCB, individuals who are diagnosed with a life limiting illness that presents as a more “visible” illness (i.e. an illness with more observable and progressive physical symptoms like in cancer) versus an “invisible” illness (i.e. mental, emotional, psychological symptoms or stable physical symptoms like in chronic pain, end stage kidney disease, dementia, etc.) are going to be more readily registered for BCPCB and receive more hours of service from home care due to the biomedical criteria used to determine eligibility to these services as outlined in BCPCB and the Policy Manual (Chui et al., 2015). 43 intervention and aggressive management of disease, to then focus on a pattern of care where the priority is given to the quality of life is often difficult (James, 1996). As well, there is a general lack of understanding about palliative care in broader society which may prevent individuals with life-limiting illness from enrolling in these modes of care early enough in their disease progression to benefit from these options (Vantovec, Senier & Mayerfeld Bell, 2013). As a result, physicians may not have conversations to determine patients’ goals of care and whether palliative care might be a good option for them (Vantovec, Senier & Mayerfeld Bell, 2013). Another barrier to determining prognosis and goals of care is that general practitioners may have inadequate time in their practice for holding such discussions (Vantovec, Senier & Mayerfeld Bell, 2013). General practitioners are in high demand as there continues to be a growing shortage of primary care providers in B.C. (The College of Family Physicians Canada, 2022). With growing patient caseloads, coupled with insufficient administrative support and stagnant payment models, the costs to maintain a family practice are becoming unsustainable (The College of Family Physicians Canada, 2022). General practitioners are challenged by both time and fiscal constraints in providing care to patients with life-limiting illness, resulting in an inability to perform comprehensive assessments and thoroughly discuss goals of care with patients that leads to inadequate care and barriers to accessing subsidized supports for these service users (Vantovec, Senier & Mayerfeld Bell, 2013). The inconsistency of physicians’ attitudes regarding how dying patients should be managed, and the lack of norms to guide physicians in their interactions and communications with the dying, contributes to the isolation of the dying experience (Moller, 2018; Kang, 2021). Dying is excluded from the shared professional culture of physicians, and to the extent that physicians are the arbitrators of medicalized death, the personalized emotional and existential 44 sufferings of the dying are defined as inappropriate content for physicians to address (Moller, 2018; Kang, 2021). With time and fiscal constraints dominating the work of general practitioners in a neoliberal culture, expressions of suffering by patients threaten efficient accomplishment of work and cannot be adequately addressed (Moller, 2018). In relation to life-limiting illness, dominant discourse functions in complex and contradictory ways. Diagnoses and prognoses facilitate communication and shared understanding among physicians and nurses through a common classification system, promoting a uniform and evidence-based approach to care and treatment (Lemperiere, 1995). Defining a group or characteristic as abnormal has also led to the populations’ stigmatization, pathologization, and experiences of discrimination for individuals with life-limiting illness, with serious social implications for their autonomy, agency, and humanity. Conceptualization of life limiting-illness in B.C. and Canada continue to be influenced by the sociohistorical context from which they arose and continue to arise. This includes biomedical and empirical conceptualizations of life-limiting illness and palliative care, neoliberal orientations of government and health authorities, ableism, and ongoing colonialism. Alongside these dominant conceptualizations and approaches to life-limiting illness, there have also been movements throughout history influencing and reforming such dominant understandings and approaches in palliative care. Historical and current trends include grassroots movements championing hospice care, concepts of total pain, symptom management, psychosocial stages of grief, social models of dignity and human rights in palliative care, culturally safe care, and equity-oriented care (Clark, 1999; Seto Neilson et al., 2013; Kang, 2021). While these approaches and models are applied to varying degrees across palliative care services in B.C., implementation of subsidy programs and policies continue to be heavily biomedically oriented, 45 colonial, and neoliberal in their approach and construction of life-limiting illness and palliative care. Construction of B.C. Palliative Care Benefits Eligibility Policy BCPCB was first implemented in British Columbia in 2001 (Crooks, 2009). The implementation of the Pharmacare ‘Plan P’ benefits program under BCPCB improved B.C. service users’ abilities to receive palliative care services in the home through providing pharmaceuticals, but it also marked a shift for the government where the priority had previously lied with building free standing hospices to now facilitating in home-based palliative care options (Crooks, 2009). This policy reform confirms the influence of neoliberal values that support this shift to de-institutionalize hospice and palliative care to the home (Bjornsdottir, 2009). The focus of BCPCB policy is to outline criteria for physicians to determine eligibility of service users for the program (B.C. Ministry of Health, 2021). The requirements for eligibility include (1) being a BC resident (2) being diagnosed with a life-threatening illness or condition (3) have a life expectancy of up to 6 months19 (4) wishes to receive palliative care at home and (5) consents to the focus of care being primarily palliative rather than treatment aimed at a cure (B.C. Ministry of Health, 2021). Once an individual is determined to be eligible for BCPCB by a physician, the program includes enrolment in the BC Palliative Care Drug Plan and coverage of medical supplies and equipment through a local health authority (B.C. Ministry of Health, 2021). The BC Palliative Care Drug Plan (Plan P) covers 100% of the eligible cost of prescriptions 19 The Canadian Institute for Health Information (2008) conducted a research study of the usage patterns of health care services in the two years prior to death for 29,456 persons of all ages who died in British Columbia between April 2003 and March 2004. The data in their study suggested that for many service users, health service use peaked in the final three to six months of life, not in the final 1-2 years of life. This data was used to justify the BCPCB period of the last 6 months of life for determining eligibility for BCPCB. 46 (including selected over-the-counter medications) listed in the Plan P formulary (B.C. Ministry of Health, 2021). The medications listed in the Plan P formulary are for the use of managing the symptoms of life limiting illness, and do not include coverage for medications that manage the progression of chronic diseases, such as oral hypoglycemics or anti-hypertensives (B.C. Ministry of Health, 2021). Practitioners must prescribe any over-the-counter medications listed in the formulary for the patient to receive coverage of the medication costs (B.C. Ministry of Health, 2021). “Eligible costs” include the cost of the drug (up to a maximum recognized by PharmaCare) and the dispensing fee (up to a maximum recognized by PharmaCare) (B.C. Ministry of Health, 2021). The Prescriber’s Guide is a companion guide to BCPCB and is accessible online through the Government of BC website (B.C. Ministry of Health, 2005). According to the Ministry of Health (2005), the Guide was created for the purposes of making BCPCB more understandable and promoting consistency in interpreting eligibility so people who need palliative care services at home receive help in a timely manner. The Guide provides interpretations of BCPCB to reduce the amount of inferential work that is needed when determining eligibility for BCPCB and registering individuals for the program (B.C. Ministry of Health, 2005). The Guide also outlines the services and resources that are provided by the BCPCB program20 (B.C. Ministry of Health, 2005). However, physicians are not personally directed to this resource, so it is up to the individual practitioner as to whether they read, reference, or use it21. Even if it was feasible for 20 The B.C. Ministry of Health’s Prescriber’s Guide (2005) is a 12 page document that outlines the BCPCB program benefits, services, resources and the registration process. The Guide is easy to find online and is user friendly. However, only 1 page of the Guide discusses BCPCB patient eligibility, and it utilizes the PPS for determination of eligibility (B.C. Ministry of Health, 2005). The Guide is currently outdated because the BCPCB policy registration form was updated to use the SPICT instead of PPS for determining BCPCB eligibility (B.C. Ministry of Health, 2005). 21 There is no research or documentation available that provides insight into how many B.C. physicians use the Guide for assessing eligibility for BCPCB. 47 physicians to have adequate time to reference the Guide to support the process of BCPCB registration for service users, the Guide offers little insight into determination of eligibility for BCPCB (B.C. Ministry of Health, 2005). The Guide still uses the outdated PPS for prognosis assessment instead of the current SPICT (B.C. Ministry of Health, 2005). Although the Guide is presented as a helpful supplemental document that contributes to consistency in assessment practices between different physicians, it does not utilize current literature or scales/tools that support equitable clinical decision-making among practitioners. Interests Served by BCPCB Policy Determining what and whose interests are served by BCPCB policy began with an exploration of who determines eligibility to the program and how this decision is made. Eligibility for BCPCB for B.C. service users is deemed solely by physicians, most often a general practitioner (Crooks, 2009). Considering that general practitioners may lack training and/or time to determine an accurate prognosis since they face workplace structural barriers for individualized discussions about goals of care with patients, accessibility for individuals who would benefit from palliative care services is impacted (Vantovec, Senier & Mayerfeld Bell, 2013; White et al., 2016). BCPCB grants physicians the power to permit or deny a client’s access to the BCPCB program which demonstrates how empirical and biomedical discourse are utilized as the rational and objective truth to determine eligibility (Foucault, 2002). This concentration of power and authority, which is legally granted to physicians, demonstrates the medical paternalism inherent in BCPCB policy as there is little room for service users, nurses, or allied health staff to have influence on accessibility (Foucault, 2002). As well, there currently exists a shortage of general practitioners in urban areas in BC, with even fewer available in remote 48 areas22 (The College of Family Physicians of Canada, 2022). With the requirement of a physician to diagnose, prognose, as well as prescribe both prescription and over the counter medications to receive coverage under Plan P, service users in B.C. are dependent on physician accessibility to receive any benefits from this policy (B.C. Ministry of Health, 2021). Another consideration of eligibility for BCPCB is the requirement of individuals with life-limiting illness to focus on palliative care instead of curative treatment (B.C. Ministry of Health, 2021). With contemporary society’s avoidance and stigmatization of death; misconceptions of palliative care; the desire to medicalize death; as well as general practitioners’ difficulty in discussing goals of care, a multitude of factors have contributed to many individuals and families choosing to continue curative treatment even when it offers little benefit (McCue, 1995; Risse & Balboni, 2013). Eligibility, in this context, is something that some individuals, and even some physicians, will attempt to avoid until it is obvious an individual is actively dying (McCue, 1995; Risse & Balboni, 2013). Beyond the difficulty of physicians discussing goals of care with their patients, accurately determining the prognosis of an individual to be less than six months is another problematic consideration for eligibility for BCPCB (Casale et al., 2020). Prognosis can be difficult for physicians to assess as there has previously been no standardized tool to aid physicians in prognosis determination (Chiu et al., 2016). Included in the updated BCPCB policy in 2021, the SPICT has replaced the Palliative Performance Scale for aiding in determination of life 22 With the increasing shortage of physicians, currently practicing physicians are faced with increasing patient caseloads and less time to spend with each patient. The less time a physician spends with a patient will impact the thoroughness of the provider assessment, possibly resulting in unmet care needs, including delayed referrals to palliative care services (B.C. College of Physicians, 2022). 49 expectancy for individuals with life-limiting illness23 (B.C. Ministry of Health, 2021). The SPICT includes multiple categories of indicators, including general indicators of poor health as well as clinical indicators of life-limiting illness (B.C. Ministry of Health, 2021). An individual must have at least two general indicators and one clinical indicator to be considered eligible for BCPCB (B.C. Ministry of Health, 2021). Assessment of general indicators for poor or deteriorating health include unplanned hospital admissions; poor performance status with limited reversibility; dependency on others for care due to increasing physical and/or mental health problems; the person’s caregiver needs more help or support; significant weight loss over last few months or remains underweight; persistent symptoms despite optimal treatment of underlying condition(s); the person (or family) asks for palliative care; chooses to reduce, stop or not have treatment; or wishes to focus on quality of life (B.C. Ministry of Health, 2021). Clinical indicators are categorized into various illness groups, including cancer, dementia/frailty, neurological disease, heart and vascular disease, respiratory disease, kidney disease, liver disease, and other conditions (B.C. Ministry of Health, 2021). Each category lists further details for conducting a clinical assessment, including observations of decline in physical and functional ability (e.g. decreased mobility, ability to eat, ability to swallow, ability to complete ADL’s, incontinence, ability to communicate, cognition/memory); an inability to receive treatment due to frailty, severity of illness or medical futility; an increase in infections or febrile episodes, falls, or physical symptoms (e.g. pain, breathlessness, ascites, hepatic encephalopathy, or variceal bleeds) (B.C. Ministry of Health, 2021). The SPICT is completed by the physician after their 23 De Bock et al. (2017) and Highet et al. (2014) found that the SPICT is valid and reliable for identifying patients with life-limiting illness, including non-cancer conditions, who would benefit from a palliative approach. These studies found that the SPICT is not restricted to specific diseases and has been tested in different settings (e.g. general practice, care home, hospital). However, no studies of the SPICT show its validity or reliability for determining a specific prognosis, nor have any studies of the SPICT been carried out in a Canadian home care context. 50 client assessment that includes a discussion with the client and family; a physical assessment; as well as a review of the client’s medical history, laboratory values, scans, and other clinical investigations24 (B.C. Ministry of Health, 2021). Although the client’s and their family’s experiences and choices are considered in the physician assessment (e.g. the client’s desire to receive palliative care services at home), service users and their families do not have any decision making authority outlined in the policy for registration for BCPCB (B.C. Ministry of Health, 2021). The utilization of the SPICT for prognosis determination is thereby limited in its regard of client and family choice in consideration for eligibility for registration for BCPCB. The focus of the SPICT for determining prognosis relies heavily on biomedical constructs such as physical deficit, level of ambulation, and illness burden as evidenced by the need for a clinical diagnosis with observable and measurable decline in physical function that creates social dependency, and the inability to receive adequate treatment for their diagnosis due to medical futility (B.C. Ministry of Health, 2021). The physician is the only authority who can determine the severity of this decline to warrant registration for BCPCB through assessment of both clinical and general health indicators (B.C. Ministry of Health, 2021). Although consideration of a service user’s wish to stop treatment, receive palliative care, improve quality of life, or have their caregiver receive more supports is included in the SPICT for determining prognosis, these are only general indicators of health decline, and these alone would not qualify a service user for BCPCB (B.C. Ministry of Health, 2021). Only a physician can assess and determine a clinical indicator of health decline, which is required for a service user to be considered eligible for BCPCB (B.C. Ministry of Health, 2021). Thus, a service user can only qualify for eligibility for 24 Although limited data exists that reveals the length of time a practitioner needs to complete the SPICT, one study in Thailand by Sripaew, Fumaneeshoat and Ingiviya (2021) found that physicians could complete the SPICT within 2.3-4.5 minutes on average if they were familiar with the tool. 51 BCPCB if they have access to a primary care physician who agrees with the severity of their illness - and has the time to conduct a thorough client and family assessment - regardless of the service user’s desire to receive palliative care services at home (B.C. Ministry of Health, 2021). The other criteria required for eligibility for BCPCB is the desire for the individual with life-limiting illness to receive palliative care services in the home (B.C. Ministry of Health, 2021). Receiving palliative care in the home suggests influences from postcolonialism (Seto Neilsen et al., 2013). Postcolonialism is a critical academic study of the cultural, political, and economic legacy of colonialism and imperialism, focusing on the impact of human control and exploitation of colonized people and their lands (Seto Neilsen et al., 2013). The privileging of biomedical discourse in BCPCB and the Policy Manual contributes to the cultural, political, and economic legacy of colonialism and imperialism by deinstitutionalizing palliative care services to the home without consideration of lack of personal or social supports and resources for individuals and families; as well as the impact and consequences of the exploitation of unpaid informal caregivers (Bjornsdottir, 2009). BCPCB and the Policy Manual also do not consider that some individuals and families prefer death to happen outside of the home (Seto Neilsen et al., 2013). Although transfer from home to hospice can occur when an individual is assessed by a physician as being within the last three months of life, there is a substantial daily cost for hospice admission and ongoing care (B.C. Ministry of Health, 2021). The cost of hospice care can prevent individuals at end-of-life from receiving care in their preferred place of death (Seto Neilsen et al., 2013). Seto Neilsen et al., (2013) found in their study that issues of place of death (e.g. cultural beliefs, socioeconomic status), use of complementary and alternative therapies, and barriers to understanding the home care system are the concerns of many patients with advanced life-limiting illness. Populations of 52 people with life-limiting illness would not be eligible for BCPCB, nor may they see BCPCB as offering any relevant benefit to their end-of-life journey, due to the specific requirement of care provision within the home rather than in an institutional setting which can conflict with individuals’ and families’ cultural and personal beliefs as well as their personal, familial and socioeconomic capacity (Seto Neilsen et al., 2013). The resources that are offered to eligible service users under the BCPCB policy also reflect biomedical and postcolonial values25 by only including subsidized services that provide pharmaceutical or medical intervention, or assistive equipment to promote physical independence (B.C. Ministry of Health, 2021). The resources included in the BCPCB program do not include any supports that address emotional, social, psychological, or spiritual needs (B.C. Ministry of Health, 2021). Alternative or complementary modalities of treatment are also excluded from the resources offered by BCPCB (B.C. Ministry of Health, 2021). Postcolonial theory brings to light the cultural categorizations that develop through the privileging of certain social groups and their knowledge (Seto Neilsen et al., 2013). These categories are juxtaposed as favourable and unfavourable stereotypes that may act to reinforce the perceived superiority of the Canadian biomedical model (Seto Neilsen et al., 2013). Cultural categories used in health care are not neutral in that categorizations tend to normalize Western biomedical beliefs and problematize health beliefs and practices outside of this model (Seto Neilsen et al., 2013). For example, Seto Neilsen et al.’s (2013) study found that some individuals value the use of traditional Chinese medicines in health care and palliative care practices. BCPCB only offers 25 The biomedical and postcolonial values being referenced are the privileging of positivism and mind-body dualistic ideas of the human body by BCPCB policy for determination of what resources are considered relevant and appropriate for B.C. service users at end-of-life. BCPCB resources are focused on medical or clinical intervention such as pharmaceutical treatments, physical care assistance, or occupational or adaptive equipment without inclusion of other essential factors to health, such as nutrition, social support, financial support or mental health support (Seto Neilsen et al., 2013). 53 resources that manage physical symptoms through pharmaceuticals and address functional decline using medical equipment to facilitate client independence and safety for caregivers in providing care (B.C. Ministry of Health, 2021). Without consideration or support of health practices outside of the biomedical and empirical model, BCPCB benefits some populations of people over others based on cultural or personal values, resulting in unequal allocation and distribution of subsidized services at end of life to all B.C. service users. By privileging biomedical models of care, the discourse in BCPCB has embedded discrimination in the services and resources that it offers to B.C. residents with life-limiting illness (Seto Neilsen et al., 2013). BCPCB focuses on the physical control of the disease which may dominate over personal needs of the dying person if the needs of symptom management assume the primary position when other, less easily specifiable social, emotional, spiritual, and psychological needs are ignored (James, 1996). The bureaucratic organization of modern medicine excludes personal experiences with dying from its standardized organization of professional activity (Moller, 2018). The biomedical values of affective-neutrality, efficiency, detachment, and rationality pre-eminently underlie the operation of the current Canadian health care system (Moller, 2018). The affective state of dying is thereby excluded from the operational mainstream of medical activity (Moller, 2018). In this sense, dying is relegated to and contained in the individual’s private or personal frame of reference (Moller, 2018). Medical discourse represents a system of statements that can be made about bodies, about sickness and about the wider world (Ashcroft, Griffiths & Tiffin, 2013). The rules of this system determine how we view the process of healing, the identity of the sick and encompass the ordering of our physical relationship with the world (Ashcroft, Griffiths & Tiffin, 2013). There are certain principles of exclusion and inclusion that operate within this system: for instance, 54 when discussing medicine there must be a distinction between different kinds, such as ‘Western’ and ‘Chinese’ medicine (Ashcroft, Griffiths & Tiffin, 2013). These are two discourses in which the body and its relationship to the world are not only different but considered and framed as virtually incompatible (Ashcroft, Griffiths & Tiffin, 2013). This explains the deep resistance in Western medicine to forms of healing that do not accord with its positivistic idea of the body (Ashcroft, Griffiths & Tiffin, 2013). Until such practices as acupuncture or herbal remedies could be incorporated into the positivistic framework of Western medicine, by being incorporated into other ‘scientific’ statements, they are rejected as superstition, in other words, they do not concur with science and the ‘truth’ (Ashcroft, Griffiths & Tiffin, 2013). The Discursive Construction of the Home and Community Care Policy Manual Once deemed eligible and registered for the BCPCB program by a physician, individuals with life-limiting illness will be assessed in their home by a palliative home care nurse to determine what support services and resources they are eligible for (B.C. Ministry of Health, 2019). The Home and Community Care Policy Manual is the document that palliative home care nurses use to determine eligibility for the level of resources an individual registered for BCPCB can receive (B.C. Ministry of Health, 2013; 2019). Services users who are eligible for the BCPCB program must also be deemed eligible for home and community care services as outlined in the Policy Manual. Chapter 2 of the Policy Manual discusses client access to home and community care services (B.C. Ministry of Health, 2013). Section B of the Policy Manual specifies the criteria for eligibility for home care services, 55 including age26, citizenship27, and diagnosis of a health condition28 (B.C. Ministry of Health, 2013). Palliative home care nurses who are employed by local health authorities must assess everyone referred to home and community care to establish eligibility for publicly subsidized services based on these criteria (B.C. Ministry of Health, 2013). Health conditions are defined in the Policy Manual, in the context of eligibility for subsidized home and community care services, as when the individual has chronic health conditions that impair the individual’s ability to function independently; has health conditions requiring care at home rather than hospitalization; or requires end-of-life care for a life limiting condition (B.C. Ministry of Health, 2013). The focus of these criteria is on functional ability and the ability to manage the health condition at home (B.C. Ministry of Health, 2013). Palliative home care nurses, through these policy texts, are given the power to determine individual eligibility for home and community care services based on biomedical and neoliberal values (Bjornsdottir, 2009). By only focusing on functional ability, the physical aspects of the assessment process dominate consideration of eligibility, with little consideration of emotional, social, psychological, or spiritual aspects of care needs. In addition, the determination of eligibility based on the ability to manage a health condition in the home serves the neoliberal agenda of shifting provision of care from institutions to the home to contain health care costs and ultimately privatize end of life care (Bjornsdottir, 2009). The positioning of palliative home care nurses and health authorities in the Policy Manual has also privileged professionalized knowledge about the best ways in which to die at home (Seto Neilsen et al., 2013). As BCPCB has staked a claim on service users’ homes as a 26 An individual must be 19 years of age or older to be eligible for Home and Community Care Services. 27 An individual must provide documents of Canadian Citizenship, Permanent Residency or have a Temporary Residence permit to be considered eligible for Home and Community Care Services. 28 The Policy Manual does not list any specific health conditions that may require home care. Rather, a health condition is defined based on its impact on functional independence, if it requires hospitalization or if it is a life-limiting condition that requires end-of-life care. 56 place for dying, claims were also made by the Policy Manual on how dying at home could and should proceed (Seto Neilsen et al., 2013). Palliative home care nurses are seen as having expertise on dying at home (Seto Neilsen et al., 2013). Their educational training, work with dying patients, and knowledge of the palliative care system is valued by service users and family caregivers, who have less experience with the system and death at home (Seto Neilsen et al., 2013). However, tension exists between palliative home care nurses and service users and their families, as service users acknowledge the need for guidance in navigating death at home, but this care is also disruptive and embodies the discursive power of institutionalization (Seto Neilsen et al., 2013; Kang, 2021). In Seto Neilsen et al.’s (2013) study, one participant stated that their knowledge of their own needs and view of how their day should proceed was minimized and subjugated in this set of relations, as they had to consider the palliative home care nurses’ schedule over their own (Seto Neilsen et al., 2013). This participant’s comments reflect the absurdity of the situation where the dying patient must prioritize and accommodate institutional processes rather than the presumed other way around29 (Seto Neilsen et al., 2013). Although palliative home care is offered as a peaceful, and often romanticized, alternative to dying in a cold, depersonalized hospital, what is hidden in this imagery is the fact that dying at home is multi-dimensional and may involve tensions, confusions, and conflicts (Seto Neilsen et al., 2013). Receipt of palliative care at home often centres on pain and symptom management, and the scheduling of care so that these activities minimally disrupt the normal routines of other family members in the home (Seto Neilsen et al., 2013). Home is a complex and powerful 29 Brazil et al. (2010) found in their study that community palliative care service delivery systems remain with considerable regional variations in availability and quality of palliative care programs, care protocols and care giver training and expertise. Limitations and restrictions in institutional processes impact the ability for palliative home care nurses to provide quality nursing care. Brazil et al.’s (2010) study revealed that the primary sources of moral distress identified by palliative home care nurses were inadequate resources to support care in the home, lack of continuity of care via timely sharing of patient information and lack of competency in caregivers who provide home care. 57 concept that comprises physical, psychological, emotional, and spiritual aspects (Seto Neilsen et al., 2013). The sense of security and identity is jeopardized when the notion of home is changed and taken over by palliative care (Seto Neilsen et al., 2013). Service users who have been deemed eligible for BCPCB must be referred to home and community care services to receive the resources offered by the BCPCB program. Section C of the Policy Manual in Chapter 2 defines the Referral and Intake process into home and community care services (B.C. Ministry of Health, 2013). The policy states that nurses in health authorities must receive, screen, and prioritize referrals to home and community care from all sources to determine the individual’s eligibility for services as per Policy 2.B; the availability of caregivers and community supports; and the urgency of the response required (B.C. Ministry of Health, 2013). When a palliative home care nurse finds an individual to be eligible for services based on their health condition, functional status and need to be cared for in the home, the nurse must conduct an assessment and develop an individualized care plan, as set out in Policy 2.D, Assessment (B.C. Ministry of Health, 2013). Eligibility remains central to determining access to home and community care services, and this can only be determined by the palliative home care nurse (B.C. Ministry of Health, 2013). After eligibility is determined by the nurse, the referral is further prioritized by availability of caregivers and community supports (B.C. Ministry of Health, 2013). The expectation that caregivers and the community will be responsible for care of the individual at end of life further illustrates the neoliberal agenda to policy ration, outsource and privatize services (Bjornsdottir, 2009). 58 The urgency30 of response required, as described in the Policy Manual, is vague and left to the discretion of the nurses based on their assessments of service users’ needs conducted over the phone (B.C. Ministry of Health, 2013). While clients and caregivers can communicate the urgency of their care needs, nurses hold the ultimate power to determine priority. Not only must palliative home care nurses determine the urgency of the response required for each service user, but they must prioritize the need of each individual in comparison to other individuals in need of care within a resource constrained system (Ward-Griffin, 2001). Not only do nurses have to compare the level of urgency between clients in their caseloads to determine the time and frequency of their home visits but their work is also shaped by fiscal constraints, inadequate skills training, and inadequate staffing (Brazil et al., 2010; Ward-Griffin, 2001). Brazil et al. (2010) found that palliative home care nurses experience high levels of moral distress from both a lack of time to assess and meet the needs of their patients due to short staffing, as well as distress from observing new nursing staff provide substandard care to patients due to a lack of adequate training in palliative care offered by the employer. In addition, Ward-Griffin (2001) observed the pressures palliative home care nurses receive from management to ‘cut costs’ by finding the least expensive home-care services or reducing the frequency of their services (Ward-Griffin, 2001). Driven by neoliberal values of scarcity and efficiency, this directive emphasizes standardization while also seriously limiting the options available to palliative home care nurses to provide quality palliative care to clients in the home, as well as take variability in needs and wishes among home-care clients into consideration (Bjornsdottir, 2009). 30 Urgency is determined by the nurses based on assessment of the patient’s physical symptoms, their level of functional independence and availability of informal caregivers to care for the patient. There is no specific language in the Policy Manual that clearly outlines how to determine urgency. 59 Construction of the Policy Manual for Eligibility of BCPCB Resources Service users who meet the criteria for the BCPCB program must be assessed for the number of hours of service they are eligible for from BCPCB resources: Section D of Chapter 2 in the Policy Manual defines the Assessment process conducted by palliative home care nurses (B.C. Ministry of Health, 2013). The assessment process includes a client home visit; confirming the client’s eligibility for home and community care services; identifying the client’s health goals and the abilities of the client to achieve those goals with the assistance of caregivers; identifying the risk to the client and/or to the caregiver for adverse health outcomes in the current situation; identifying options and available resources in the community that may support the client and caregiver(s); identifying client’s health condition(s); development of a care plan in collaboration with the client and/or caregiver(s); identifying appropriate community health services, including home and community care services; authorizing home and community care services to address the goals of the care plan; and providing information to the client and caregiver included in the care plan, such as the nature and frequency of services which have been authorized (B.C. Ministry of Health, 2013)31. Nursing knowledge used in conducting assessments continues to be grounded in Western biomedicalism and its philosophical premises in positivism (McGibbons et al., 2014). Despite integration of the language of ‘holism’, nursing science is based on positivist beliefs that the whole can be reduced to the sum of its parts (James, 1996). This can be observed in the Assessment section of the Policy Manual in that nurses are reducing a client’s experience with dying to identifying their health conditions and functional status while creating a care plan that 31 There is no published information that provides insight into the length of time the nursing assessment process usually takes in a Canadian context. 60 maximizes the use of private pay community services and the use of unpaid informal caregivers (B.C. Ministry of Health, 2013). This biological reductionism in assessment processes runs in tandem with empirical nursing theories and nursing diagnoses that further sustains conditions of social domination, limits service user autonomy and responsibility, and oppresses individuals and groups (McGibbons et al., 2014). The discourse of nursing diagnosis appeals to the dominance of empirical analytic science and equates this dominance with professional social status (McGibbons et al., 2014). The palliative home care nurse remains the authority in determining and authorizing the appropriate amount of home support services (for personal care assistance tasks) and number of nursing home visits (for assessment of symptom management) based on service user health condition, availability of unpaid informal caregivers32, and functional ability (B.C. Ministry of Health, 2013). Although palliative home care nurses are given authority to allocate BCPCB resources by the discourse used in the Policy Manual, nurses are operating under the power of neoliberal managerial technologies that are aimed at reducing health care expenditure (Bjornsdottir, 2009). This new technology rendered work previously performed by nurses, such as holistic palliative care practices that are centred on emotional, psychological, and spiritual support, invisible and therefore obsolete (Bjornsdottir, 2009). These technologies include both overt rules, such as limits on the number of visits or length of services made available, and covert strategies that encouraged the nurses to stress patient independence and self-care 32 Determination of home support service hours does consider the availability of unpaid, informal caregivers to provide care for the service user (B.C. Ministry of Health, 2021). However, individuals with no family caregivers can only receive the maximum of 4 hours of service a day as long as the service user demonstrates a moderate amount of physical care needs (i.e. requires assistance with dressing, personal care) (B.C. Ministry of Health, 2021). Individuals without caregivers will not be able to die at home (they must be transferred to hospital or hospice for end-of-life care) unless the service user can pay for private pay nursing services in addition to the maximum subsidized 4 hours a day service offered by provincial Health Authorities (B.C. Ministry of Health, 2021). Determination of home support service hours does not consider financial hardship as part of the eligibility process. 61 (Bjornsdottir, 2009). As a result of this, no time is allocated for finding out how the patients perceived their situation and what support they might wish to receive from the governmental sector (Bjornsdottir, 2009). Despite collaborative care plans being mentioned in the Policy Manual to consider the health goals and preferences of the clients, these goals and preferences must be negotiated by palliative home care nurses within the boundaries of the existing BCPCB policy (Seto Neilsen et al., 2013). Service users who are deemed eligible for the BCPCB program need to be assessed and approved for home support services. Chapter 4 of the Policy Manual describes home health services in B.C. (B.C. Ministry of Health, 2019). Section B of this chapter describes home support services, with subsection 2 describing access to these services (B.C. Ministry of Health, 2019). Health authorities must deliver home support services to eligible clients consistent with allocation of home support services based on an assessment of the client’s health and functional status; the ability of the client and caregivers to manage care needs with available community supports; the client’s established health care goals; and priority must be given to clients who have been assessed as per Policy 2.D, assessment as having the highest care needs or as living at the highest levels of risk (B.C. Ministry of Health, 2019). Although the palliative home care nursing assessment is conducted in collaboration with the client and family, the Policy Manual guidelines mandate nurses to use specific client physical assessment tools to determine adequate resource allocation (B.C. Ministry of Health, 2019). Despite the discourse in the Policy Manual that grants power to palliative home care nursing assessments in determining resource allocation, nurses must operate within the fiscal constraints mandated by managerial technologies (Bjornsdottir, 2009). This is demonstrated in the tool that palliative home care nurses use to assess functional status: the Palliative Performance Scale 62 (PPS)33 (Victoria Hospice Society, 2012). This scale categorizes different assessments in order of importance to calculate functional ability (Victoria Hospice Society, 2012). The order of importance, from most to least important, is as follows: (1) ambulation (2) activity level and progression of disease (3) self care ability (4) intake amount and (5) consciousness level34 (Victoria Hospice Society, 2012). Each assessment domain has a score in an increment of 10 that ranges from 0% to 100% (Victoria Hospice Society, 2012). Each increment of 10% in each domain contains a description of what that score looks like; for example, an individual who is completely bedbound would score a PPS between 0-30% based on their other performance indicators, like consciousness level (Victoria Hospice Society, 2012). A score of 100% means that an individual is able to carry on normal activity without evidence of disease; and a score of 0% means that the individual is deceased (Victoria Hospice Society, 2012). Each domain is scored individually and then evaluated as a whole to determine an overall PPS score; ambulation is considered the most important indicator for determining an overall PPS score, for example, if an individual is completely bedbound and unable to ambulate (30%) but is still able to be involved in self care (40%), the overall PPS score would be 30% (Victoria Hospice Society, 2012). Once the PPS level is determined by the nurse, the number of home support service hours, as well as the frequency of palliative home care nursing visits, is determined by existing parameters outlined in the Policy Manual (Victoria Hospice Society, 2012). Palliative home care 33 There are no studies available that discuss the validity and reliability of the PPS for guiding nursing decision making and determining eligibility of service hours and resources in home care for B.C. service users deemed eligible for BCPCB. Campos et al. (2009) have identified the very limited reliability and validity studies of the PPS, overall, since its implementation despite its widespread use. This is a significant limitation in the nursing assessment process for identifying service user needs. 34 The Palliative Performance scale domains are based off the Karnofsky Performance Status Scale (Karnofsky & Burchanel, 1945). Karnofsky & Burchanel (1945) created a scale that quantifies a patient’s functional abilities and provides a score to help physicians determine or evaluate treatment options as well as prognose disease. Karnofsky & Burchanel (1945) claimed that performance status in ambulation, activity, self care ability, intake amount and consciousness level are highly correlated with survival time and need for services in the home. 63 nurses can not provide services that exceed these parameters without prior managerial approval (B.C. Ministry of Health, 2013). Service users who meet the criteria of the BCPCB program do not have equal access to medical supplies and equipment. Section G of Chapter 4 specifies the allocation of Medical Supplies and equipment based on BCPCB policy (B.C. Ministry of Health, 2019). The service needs are determined based on the palliative home care nurse’s assessment of an individual’s need for medical supplies and equipment (B.C. Ministry of Health, 2019). The nurse must also reassess the client’s need for approved medical supplies and equipment on an ongoing basis (every 5 weeks); discontinue the provision of approved medical supplies and equipment to stable clients who are no longer eligible for approved medical supplies and equipment; discontinue the fee waiver for home support service to clients who are no longer eligible for approved medical supplies and equipment; and notify the client’s medical/nurse practitioner when a client is assessed as no longer needing supplies and equipment through BCPCB (B.C. Ministry of Health, 2019). Examples of medical supplies that are provided to eligible clients based on assessed need include routine dressing supplies; medication administration supplies (Needles, syringes, swabs); urinary catheter care supplies; and incontinence supplies (B.C. Ministry of Health, 2019). Equipment that is available to eligible clients based on assessed need include approved pain control delivery technologies, commodes, bath seats, walkers, non-motorized wheelchairs, and hospital beds for symptom management and safety (B.C. Ministry of Health, 2019). For eligible service users to access these supplies and equipment, they must be within the geographical location of a home and community care office in B.C. (B.C. Ministry of Health, 2019). For eligible individuals who live in remote areas, which is primarily individuals of Indigenous 64 ancestry, they will be unable to access these subsidized supplies and equipment even if they meet eligibility criteria for BCPCB (Seto Neilsen et al., 2013). This lack of access due to geographical location further illustrates the inherent discrimination and post-colonial influence on the development of palliative health care services and associated resource allocation in B.C. Interests Served in the Allocation of BCPCB Resources An analysis of the Home and Community Care Policy Manual brings to light how services that have traditionally been regarded as health care have been redefined as social matters belonging to the private sphere of the family (Bjornsdottir, 2009). Many individuals with life-limiting illness are identified as being primarily in need of social care (such as housekeeping, meal preparation, transportation or companionship which are services that are only offered by private pay companies) whereas ‘health’ care remains free under BCPCB policy (James, 1996). This situation constitutes a difficult dilemma for nurses working in palliative home care (Bjornsdottir, 2009). Palliative home care nursing is performed in the space between public services and the home, where nurses become mediators between the private world of the family and the state or communities (Bjornsdottir, 2009). Palliative home care nurses witness the real cost for patients and their families of such cost containment strategies, but at the same time, their practice is shaped by the administrative discourse in their work setting35 (Bjornsdottir, 2009). Paradoxically, although nurses usually resent restructuring, they nevertheless become key players in reshaping practice to meet the expectations raised by new policy (Bjornsdottir, 2009). 35 Abendroth & Flannery’s (2006) study explored predictors of being at risk for compassion fatigue and found that 80% of their sample of 216 community-based palliative care nurses were in the moderate- to high-risk category for both burnout and compassion fatigue. A lack of resources in the community was a significant concern identified by nurses including lack of time, readily available equipment, and relief staff; nurses felt that the limited resources made it particularly difficult to meet the expectations/preferences of clients and their family members, such as providing a peaceful home death experience (Abendroth & Flannery, 2006). 65 Considering the position of Foucault, reality is constructed through language or the discourses that are available at any historical moment (Bjornsdottir, 2009). Discourses are not neutral, but rather represent different viewpoints and interests: they define or limit what can be considered meaningful and what can be seen as possible (Bjornsdottir, 2009). Nursing practice takes place at the point of interchange between everyday life and its textual representations or the discourses that have become authoritative within the health-care system (Bjornsdottir, 2009). Discourse that describes palliative care as a specialty in the community may enhance medical dominance and ‘medicalization’ at the expense of the expertise and ‘holistic’ care sought after by palliative home care nurses (James, 1996). The assumption that palliative home care nurses can solve all the problems that clients with limiting-illness face with their nursing and medical knowledge is manifestly unfounded (James, 1996). Without consideration of the knowledge of the individual and family, the skills, experiences and coping mechanisms of the dying person and their families are undervalued (James, 1996). This is an example of the empiricism and biomedicalism evident in palliative home care policies that privileges the expertise of health care workers while diminishing the autonomy and self-confidence of B.C. service users (James, 1996). The drive for efficiency, standardization and cost effectiveness in palliative home care policies and services has created pressures against the improvement of holistic palliative nursing care (James, 1996). The psychological and social aspects of holistic care, which are central to the care of dying patients, are difficult to measure and may be invisible to those not involved in its delivery (James, 1996). Outcome measures used by managerial technologies to identify effectiveness are difficult to measure in holistic care and are unlikely to include improved ‘quality of life’ indices (James, 1996). 66 Legislation and Discourse According to Fairclough (2009), discourse is dialectical and therefore incapable of being removed from the power, values, and belief systems of a particular socio-historical context; legislation maintains the power to shape identity and social institutions (Foucault, 1991). BCPCB exerts force through power-ladened, hidden and taken-for-granted assumptions embedded within BCPCB policy as they reflect dominant values and beliefs held in greater society (Foucault, 1991). Forms within the Home and Community Care Policy Manual further produce categories of people with life-limiting illness to sort and prioritize how they should be cared for and what resources they are eligible for (B.C. Ministry of Health, 2013; 2019). Since legal discourse is often inaccessible36, difficult to understand and therefore difficult to implement into practice, the Ministry of Health created the Prescriber’s Guide to BCPCB (2005). BCPCB and the Guide rely on ‘naturalization’ – a practice of presenting information as ideologically neutral. This renders paternalistic practices and routines uninterpretable as to further the BCPCB and the Guide’s ideological power (Ahmadvand, 2011). Summary This chapter presented the findings from the analysis undertaken in this thesis; specifically the historical overview of shifts in socio-cultural understandings of life-limiting illness, palliative care, prognostication, and eligibility for BCPCB and its associated resources. The analysis engaged the socio-historic events and forms of discrimination impacting the current conceptualization of life-limiting illness and palliative care services in B.C. The findings reflect a critical discourse analysis of how these events and forms of discrimination produce and reify the 36 Legal discourse is largely limited by the absence of the patient voice due to its inaccessibility to the public. 67 discursive context under which the BCPCB and the Home and Community Care Policy Manual were created. Without understanding these events, alongside the individual and structural experiences of discrimination, we are unable to understand their impact on people experiencing life-limiting illness and their implications, especially in relation to BCPCB in its current form. 68 Chapter 4: Discussion and Implications of the Discourse of Eligibility The thesis findings highlight how BCPCB eligibility is determined by physicians and nurses through the implementation of various assessment practices within the BCPCB and Policy Manual. Determination of eligibility is associated with entitlement to the provision of subsidized services for individuals experiencing life-limiting illness of greatest need and shortest prognosis. The discourse of eligibility justifies and normalizes biomedicalization and deinstitutionalization of palliative care services by aligning life-limiting illness with physical deficit, illness burden, medical futility, and social dependence without sufficient critical analysis of the role of psychosocial supports, caregiver capacity, and financial stability (Moller, 2018). My analysis illustrates how discourses of eligibility can contribute to health inequities, social isolation, and feelings of meaninglessness37 for individuals at end-of-life that are amplified by prevailing neoliberal discourses associating people with life-limiting illness with vulnerability, incapacity, and dependency (Moller, 2018). Since eligibility for BCPCB and its associated resources is determined by policies that guide healthcare practitioners’ assessments, biomedicalization is privileged in palliative care policy and practice. The construction of the BCPCB and the Policy Manual requires B.C. service users with life-limiting illness to demonstrate a severity of physical deficit and clinical indicators to be deemed eligible for BCPCB, as well as to gain access to BCPCB resources through exhibiting a high level of “urgency” in their “need” for palliative care services. Although “need” is only used in the Policy Manual, this linguistic expression of dependence underlies the entirety 37 Moller (2018) describes the social and economic death that precedes biological death for individuals at end-of-life. With no cultural significance associated with death and dying in a modern world, individuals with life-limiting illness are perceived as lacking purpose in their lives, in their communities and in society. This social isolation and lack of purpose contributes to feelings of meaninglessness for individuals at end-of-life (Moller, 2018). 69 of the BCPCB and Policy Manual. As health care providers determine individuals’ needs, they employ rationality in decision-making to determine needs and align BCPCB eligibility with individual entitlement. In my analysis, I have shown how BCPCB eligibility discourses and practice have ideological impacts that erase the power of individuals with life-limiting illness at end-of-life decision-making. Reproduced through health care providers’ assessments directed by the BCPCB and Policy Manual, these practices fail to recognize personal autonomy and individuals’ capacity for self-determination which violates the right to personal liberty. Undermining self-determination, inclusivity and autonomy is associated with negative health outcomes and barriers to accessing palliative care services early enough in a person’s illness trajectory to benefit from improved quality of life (Gwyther et al., 2009). When health care providers are empowered through policy to act as gate-keepers to BCPCB and prioritize the needs of all people with life-limiting illness and their families, biomedical and neoliberal discourse dominate to limit meaningful patient engagement in end-of-life care decision-making and access to resources at the end of life (Gwyther et al., 2009). Although the stated intentions of BCPCB and Policy Manual are to ensure the fair allocation of resources to people with life-limiting illness with the greatest need, these policies in fact contribute to unfairness in accessing and distributing BCPCB resources38. In my analysis, how eligibility for BCPCB is determined, combined with the determination of associated resources that are outlined in the Policy Manual, in fact, promotes inequitable allocation of subsidized palliative care services to people with life-limiting illness in B.C. using biomedical, neoliberal, and ableist assessment practices. In related literature, my findings resemble those of a 38 There is no published data available that explores the demographics of BCPCB service users and if there is any diversity across factors such as age, race, or gender. 70 study conducted by Bjornsdottir in 2009 that investigated structural discrimination of women imposed through home care policy. Bjornsdottir (2009) found in her study of home care nursing that the implementation of the New Public Management policy led to a shift in focus from patients’ needs for services to the economics of health care; serious cuts to health care expenditure occurred due to this policy, with decreased institutionally based services being a key strategy to cost reduction. Bjornsdottir (2009) found that the current conservative trend in policy assumes that the family, mainly women, will be able and willing to shoulder unpaid caregiving responsibilities. This policy change has resulted in patients, their families and informal caregivers reporting a high amount of stress and strain and expressing a wish for more formal assistance or monetary compensation for caregiving responsibilities (Bjornsdottir, 2009). My findings in this thesis show how the BCPCB and Policy Manual disproportionately affects people experiencing numerous and intersecting forms of structural discrimination in its application. Therefore, if the BCPCB and Policy Manual are not serving all patients, the critical question remains as to whose interests and needs are being privileged and served. Eligibility for palliative care services under the BCPCB program is constructed to primarily serve the health authorities39 enforcing the legislation, versus the patients accessing BCPCB. Healthcare providers are obliged by health authorities to utilize the forms within the BCPCB and Policy Manual to govern their clinical decision-making for determining eligibility and equitable resource allocation of subsidized palliative care services. Collaboration with patients and their families within BCPCB and the Policy Manual for determining eligibility to BCPCB resources are minimal and further, are not obligated, when identifying clinical indicators 39 The neoliberal orientation of health authorities is supported by the ideology of scarcity and fiscal austerity. The current construction of eligibility for BCPCB and its associated resources supports the neoliberal agenda of health authorities. 71 of disease, diagnosis, prognosis or appropriate service hours. All decision-making authority remains with the physician and nurse who are working in suboptimal working conditions40 within constrained health care systems. The BCPCB and Policy Manual utilize and depend heavily upon an official, bureaucratic, biomedical discourse in an attempt to construct both as neutral and objective, obscuring the discursive power embedded within the policy and entrenching unequal power relations among physicians and nurses, and patients and their families. The lack of patient engagement affords healthcare practitioners near unilateral power over determination of eligibility for BCPCB and its associated resources. While many nurses and physicians may try to resist aspects of the BCPCB and Policy Manual (for example, through the promotion of shared decision making), the power exerted both structurally and ideologically by the BCPCB and Policy Manual creates, sustains, and reproduces inequities though health care providers’ practice that impact access to palliative care services. While determination of eligibility is used to identify individuals with life-limiting illness who are at a high risk for health deterioration, the BCPCB and Policy Manual often acts as a reactionary measure to deal with systemic shortfalls on an individual basis. For example, the BCPCB maintains biomedical approaches for diagnosing and prognosing life-limiting illness, locating problems within individuals without considering their social causation (Arnup, 2013). Biomedical discourses exclude social and structural factors that influence life-limiting illnesses (such as poverty, ableism, colonialism, discrimination, lack of evidence-based and appropriate services), and are therefore reductionist, reactionary and individualistic (Bjornsdottir, 2009; 40 The suboptimal working conditions that physicians and nurses work in include staffing shortages, large patient caseloads, limited resources and limited time to spend with each individual patient which can impact the quality of patient care (B.C. College of Physicians and Surgeons, 2021; Brazil et al., 2010). 72 Moller, 2018). These discourses divert attention away from addressing social and structural inequities, primarily focusing on individually oriented problems and solutions – emphasizing prognosis and pharmaceutical treatment versus poverty reduction and increased social supports. The manner in which the BCPCB and Policy Manual construct eligibility and position patients highlights how discourse operates more broadly to support practices of governing human behaviour in contemporary society. Public perceptions, including the manner in which we systemically ‘treat’ people with life-limiting illness, remains heavily influenced by the social and historical context from which conceptualizations of life-limiting illness arose and continue to evolve from (Bjornsdottir, 2009). Stigma and discrimination of individuals at end-of-life has depicted them as weak, helpless, and disposable (Moller, 2018). The BCPCB and Policy Manual operate to incite problematic power relations against people with life-limiting illness that are justified through discourses of discrimination and othering - relying on biomedicalism, ableism, neoliberalism, and colonialism. Rather than addressing or reducing structural inequalities that are avoidable, socially produced and structurally driven, the BCPCB and Policy Manual legitimizes and formalizes inequitable treatment through policy discourse, further disadvantaging those already experiencing social and economic marginalization (Stajduhar et al., 2011). Without acknowledging or critically analyzing the socio-historic influences towards contemporary and evolving conceptualizations of life-limiting illness, dominant policy approaches to palliative care will continue to rely upon and reinforce physical, attitudinal, and systemic barriers to forms of eligibility determination and resource allocation that is inequitable in nature (Stajduhar et al., 2011). 73 Palliative Care Nursing Practice Biomedical discourses shape the delivery of palliative care as the basis of practice (Vatovec, Senier, & Bell, 2013). The biomedical approach to palliative care nursing encourages task-oriented and impersonal engagement, primarily focused on diagnosis, prognosis, pharmaceutical and medical interventions (Bjornsdottir, 2009). Biomedical discourse furthermore positions healthcare practitioners as ‘experts’ maintaining specialized knowledge and medical authority, while positioning patients as dependent and passive recipients of advice and treatment (Moller, 2018). The primary role of the palliative care nurse has depended on biomedical discourses affecting service-user engagement and approaches to palliative care services. Palliative home nursing practice in British Columbia is discursively shaped by the Policy Manual, as nurses are directed to reduce health care costs by mitigating or reducing risks of hospitalization or institutionalization (B.C. Ministry of Health, 2013). The palliative home care nurse is also responsible for identifying services in the community that can meet the client’s needs, and these services are often privatized which adds additional cost for the service user (McGregor, 2001). These private services that are utilized in the community are meant to address the gaps in care under the BCPCB program. Since BCPCB and the Policy Manual only offer services to assist with physical care needs (i.e. personal care tasks, medical equipment and supplies, and pharmaceuticals), there are no subsidized services offered for nutrition needs, counselling services, spiritual care, house keeping or companionship41 (B.C. Ministry of Health, 41 The lack of consideration for non-physical health care needs is a major limitation of BCPCB and the Policy Manual because it does not integrate the proven significance of holistic care practices for improving quality of life and the interconnectedness between physical and non-physical aspects of health into its policies (Bjornsdottir, 2009). 74 2021). This is important for nurses working in palliative care; this claim is reinforced by the findings in Simms’ (2003) study that demonstrated how the needs of individuals with life-limiting illness have been defined as social needs rather than health care needs. Similarly, Purkis (2001) described in their study how palliative home care nurses had been co-opted into limiting services to those suffering from life-limiting illness due to this separation of social needs versus health care needs. Ultimately, the patients and informal caregivers (e.g., family) are expected to manage their illness on their own (Bjornsdottir, 2009). Palliative care nurses are positioned to work with competing models of care since broad conceptualizations of palliative care maintain biomedical orientations that reinforce individualism and paternalism. Conversely, the CNA code of ethics (CNA, 1997) guides nurses to provide care that promotes fairness, social justice, beneficence and accounts for social contexts. Furthermore, the Framework for Palliative Care in Canada guides palliative nursing care practice in Canada by outlining ethical principles of a palliative approach, including care that is holistic, client and family-centred, and focused on improving quality of life (Health Canada, 2017). The implications of positioning palliative care nurses within this ethical paradox were identified in Brazil et al.’s (2010) study as a primary source of moral distress for palliative home care nurses and profoundly impacts their emotional and psychological health and wellbeing. Implementation of inequitable assessment measures formalized under the Policy Manual positions nurses in contradictory ways - between professional obligations under the Policy Manual and ethical nursing practice (Canadian Nursing Association, 2017). To implement the Policy Manual, nurses are limited in their ability to incorporate a patient’s right to make decisions, and in many circumstances, their voice (Bjornsdottir, 2009). This directly conflicts 75 with the ethics promoted for and by nurses such as “providing safe, compassionate, competent and ethical care” while “promoting justice” (CNA, 2017, p. 8-15). The BCPCB and Policy Manual further infringes upon various aspects of The Charter of Rights and Freedoms (1982), including sections of the right to liberty, the right not to be deprived thereof, and equality provision. Depriving people’s rights to sufficient resources and caregiver supports for palliative care at home is morally distressing for nurses and traumatic for patients and their families (Bjornsdottir, 2009; Brazil et al., 2010). 76 Chapter 5: Recommendations and Conclusion The foundation of the BCPCB and Policy Manual have been structured by knowledge and practice that are based on the socio-historical context from which conceptualizations of life-limiting illness arose. The current social order requires such ableist constructs and marginalization to sustain the problematic power relations and inequitable resource allocation as formalized by the BCPCB and Policy Manual. Disrupting the current social order would challenge the manner in which life-limiting illnesses are constructed, how eligibility for palliative care services is enforced, as well as the broader value systems of productivity and profit potential of individuals42. Disruption of the current social order would further necessitate the confrontation of structural inequities being reproduced for patients – and for people with life-limiting illness more broadly. Based on the thesis findings and discussion, recommendations are provided in the context of policy, education, nursing practice and future research. Policy Legislation and palliative care policy must be reconstructed to comply with The Charter of Rights and Freedoms (1982) and the proclamation by the Standing Committee of the Canadian Senate (2000) that end-of-life care is the right of every Canadian citizen, balancing the “autonomy and liberty of the individual” with the need for palliative care services (Government of Canada, 2000; Gwyther et al., 2009). Both palliative care and human rights are based on principles of the dignity of the individual and the principles of universality and non-discrimination (Gwyther et al., 2009). BCPCB and the Policy Manual must be modified from their current forms to integrate opportunities for the voice of service users and their families to 42 The profit potential of individuals refers to how individuals are reduced to commodities in a neoliberal society wherein their life-limiting illness needs are considered less important than fiscal austerity. 77 impact the assessment and decision-making process for eligibility determination of BCPCB and its associated resources; as well as expanding the definition of “end-of-life” beyond a prognosis of less than 6 months43 and incorporating validated assessment tools that can accurately predict an individual’s life span. The reconstruction of the BCPCB and Policy Manual must also include a critical review and analysis of the various discourses relied upon that maintain problematic power relations of healthcare practitioners and individuals with life-limiting illness. Discourses of equity provide a counter to current health care practices and structures that rely on narratives and discourses based on deficit, vulnerability, and medical futility. An equity orientation can also be applied to address varying forms of marginalization experienced by people with life-limiting illness, challenging the dominant socio-historic discourses in palliative care practice and legislation (such as biomedicalism, ableism, colonialism and neoliberalism) (Brennan, 2014). Education Education of health care providers and the public about palliative care services would facilitate improved quality of life for individuals at end-of-life as well as contribute to a cultural shift in how we talk about death and dying (Health Canada, 2017). Meaningful discussions about death, dying, grief and bereavement can contribute to greater acceptance and understanding of what palliative care is and how it can positively impact people's lives (Health Canada, 2017). By increasing awareness of palliative care services and providing public education related to access (including current policy, eligibility criteria, and the policy implementation process), individuals 43 The current definition of “end-of-life” as being a prognosis of less than 6 months suggests that terminally ill individuals who are suspected to live more than 6 months are not deserving of end of life care services and support. 78 can seek out, discuss and advocate for palliative care services with their health care provider earlier in their disease trajectory and experience greater benefit to their quality of life. Another way to promote equity in access to palliative care services for B.C. service users includes a focus on palliative care training and education for health care providers and caregivers. Ways to promote a robust and skilled health workforce and maintain sustainable palliative care delivery includes developing mandatory palliative care courses as part of undergraduate health care provider curricula; and developing national core competencies for palliative care specialists, and all other health care providers (including unregulated providers, such as personal support workers) (Health Canada, 2017). The goal of this education is to equip all future health care providers with the competencies and skill base to provide palliative care services appropriate to the needs of the population being served (Health Canada, 2017). Nursing Practice Since nurses maintain the ethical obligation to promote and ensure equitable care for all, it is important for nurses to be aware of and to lobby against the discourses underlying and being enacted through the BCPCB and Policy Manual, including how such discourses influence and affect nursing practice44 (CNA, 2017). Nurses enacting biomedical and neoliberal assessment practices must work against their designation’s code of ethics (CNA, 2017). If palliative care is to give primacy to equitable care, current practices must reduce reliance on processes that exclude the voice of the patient and their informal caregivers, as well as unproven and invalid assessment tools for determining prognosis and appropriate allocation of resources. In order to 44 Brazil et al. (2010) found in their study that palliative home care nurses recognized how institutional policies that limit resource allocation were a source of moral distress for them in providing quality nursing care. No literature was found that explores the ways that nurses navigate the tension posed by policy that constrains their decision making in allocating resources to patients at end-of-life in a Canadian context. 79 provide a social and equity approach to palliative care service allocation, we must look beyond the conventional and binary discourses presented through the biomedical models currently offered. Opportunities must be provided for the client, family, nurses and interprofessional team to play a more significant role in the process of decision making for determination of eligibility for BCPCB and its associated resources. This could include expanding the role of the registered nurse to receive specialty education in illness progression, palliative care, prognosis determination and using validated assessment tools to identify individuals who would benefit from palliative care services. If the BCPCB policy expanded the scope of the practitioner with registration authority to include specialty certified registered nurses, then R.N.s could register individuals with life-limiting illnesses for BCPCB as appropriate. Another solution to promote more timely registration of clients for BCPCB would be to have specialty certified registered nurses work in partnership with a physician to assess, identify and register appropriate service users who would benefit from palliative care. According to the Framework for Palliative Care in Canada (2017), an equity-based approach in care recognizes that different actions are required to achieve similar outcomes for different individuals or groups due to the uneven distribution of power, wealth, and other resources in society. An orientation in equity in nursing practice seeks to reduce power differentials and address issues at the individual and structural level – such as access to subsidized social supports and poverty reduction (Bryant, 2019). An equity-oriented approach avoids dichotomous and individualistic thinking common in discourses surrounding life-limiting illness (Fishman et al., 2009). The discourse of equity promotes the provision of holistic and patient and family centered palliative care services, offering more nuanced understandings of life-limiting illness. Discourses of equity can be incorporated into palliative care practice through 80 implementation of equity-oriented care which includes practice grounded in human rights, culturally safe care, and holism (Fitzsimons et al., 2007). Nurses are ideally positioned to advocate for the incorporation and implementation of equity-oriented care into nursing programs, practice settings and broader health systems. As healthcare practitioners, nurses can assist patients with the navigation of complex and often inaccessible services, policies, and legislation. Nurses can also promote shared decision-making, engage in critical reflexivity, and challenge discriminatory views while advocating for more equitable treatment for individuals with life-limiting illness in their workplace (Bjornsdottir, 2009). Challenging and resisting harmful discourses, such as those reflected in eligibility and the ableist positioning of patients employed by the BCPCB and Policy Manual, will help to further shift the manner in which people with life-limiting illness are portrayed in legislation - achieving improvements in direct care practices and social stigma. Health policy action and amendments to legislation alone however will not tackle the structural inequity experienced by palliative care populations; nurses must therefore call attention to and disrupt the social inequities and harmful value systems impacting people with life-limiting illness more broadly, engaging in social justice and advocacy regarding the social determinants of health and human rights (Gwyther et al., 2009). Engaging with issues on a structural level provides nurses the opportunity to influence the course of health policy processes, legislation formulation and resource allocation decisions. In order to create more accessible and equitable health systems and societies for people with life-limiting illness, nurses must work collaboratively and interprofessionally, maintaining open dialogue with patients, families, stake-holders, politicians and policy makers. Foregrounding the patient experience is central to understanding and providing a more equitable alternative to 81 palliative care practices, promoting practices that are influenced by and for the people they are intended to serve. Nurses must furthermore support and advance the critical education of nursing students, which includes the analysis of the nurse’s role in palliative care, impacts of ableism in determination of eligibility in BCPCB and the Policy Manual, and ways to mitigate unethical practices therein. Such curriculum should be promoted to all healthcare practitioners who interface with the BCPCB and the Policy Manual, achieving improvements in social stigma and direct care practices. Future Research Sustained research and data collection is also vital for long-term and continuous improvement in palliative care: population level studies to investigate equity across patient diversity factors for BCPCB registration would provide evidence needed to address current knowledge gaps (Health Canada, 2017). Studies that evaluate the predictive validity of the current SPICT used for assessment of BCPCB and its associated resources would provide insight on how to overcome current equity challenges, and drive innovation towards effective tools and eligibility assessment practices (Health Canada, 2017). Another important future research study would include talking to palliative care patients and their informal caregivers about their experiences with the current BCPCB and Policy Manual and its implications to their health and wellbeing. Ultimately, improved data collection and research will enhance the quality of life for all B.C. residents living with life-limiting illness by providing much-needed data and evidence to drive improvements in policy that incorporates valid predictive assessment tools, as well as greater patient, family and informal caregiver experiences of palliative care access and decision-making for eligibility of BCPCB while also supporting feasible economic costing models and holistic approaches to care (Bjornsdottir, 2009). 82 To date, very limited research exists regarding ways nurses embody or resist inequitable or discriminatory palliative care policies and practices. Future research should seek to uncover how nurses, and healthcare practitioners more broadly, go about resisting or normalizing inequitable or discriminatory palliative care policies and practices. The SPICT and PPS implementation of the BCPCB and Policy Manual should also be studied to determine the predictive validity, reliability, and equity of current eligibility assessment approaches. Completing a global scan that analyzes and compares the most current and equitable approaches to eligibility determination for palliative care services will generate knowledge and evidence to drive policy and legislative alternatives to the current BCPCB and Policy Manual in B.C. Conclusion This thesis explored the socio-historic context of palliative care and life-limiting illness in Canada and analyzed and discussed discourses within the BCPCB policy and the Home and community care policy manual: Home health services. Utilizing Fairclough’s Dialectical–Relational Critical Discourse Analysis, this thesis analyzed how BCPCB and the Policy Manual govern the practices and decision-making of physicians and nurses for determination of service users’ eligibility for BCPCB, as well as determination of appropriate resource allocation based on perceived level of the service user’s need, function, illness burden and urgency. Analyses of the eligibility criteria texts figured centrally, including an analysis of how eligibility is determined and who’s and what interests are served. This analysis confirmed how the BCPCB and Policy Manual are constructed within socio-historic discourses of biomedicalism, medical paternalism, empiricism, ableism, postcolonialism, and neoliberal orientations of the provincial government and local health authorities. A discussion of the implications identified the current inequities in access to palliative care services for individuals with life-limiting illness in B.C., as 83 well as the moral and professional dilemmas that palliative home care nurses must face when applying the Policy Manual in practice. Recommendations focused on how nurses can advocate in practice, education, research, and policy to promote equity and timely access for B.C. service users with life-limiting illness to BCPCB and its associated resources. 84 References Abendroth M., & Flannery J. (2006) Predicting the risk of compassion fatigue. Journal of Hospice Palliative Nursing 8(1), 346-356. Afshar, K., Feichtner, A., Boyd, K., Murray, S., Jünger, S., Wiese, B., Schneider, N., & Müller- Mundt, G. (2018). Systematic development and adjustment of the German version of the supportive and palliative care indicators tool (SPICT-DE). BMC Palliative Care, 17(1), 27-27. https://doi.org/10.1186/s12904-018-0283-7 Ahmadvand, M. 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Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Brown, Helen
A critical discourse analysis of British Columbia's palliative care benefits eligibility
Text