"You can't die here": an exploration of the barriers to dying-in-place for structurally vulnerable populations in an urban centre in British Columbia, Canada.

BACKGROUND: One measure of quality in palliative care involves ensuring people approaching the end of life are able to receive care, and ultimately die, in the places they choose. Canadian palliative care policy directives stem from this tenet of autonomy, acknowledging that most people prefer to die at home, where they feel safe and comfortable. Limited research, however, considers the lack of 'choice' people positioned as structurally vulnerable (e.g., experiencing extreme poverty, homelessness, substance-use/criminalization, etc.) have in regard to places of care and death, with the option of dying-in-place most often denied. METHODS: Drawing from ethnographic and participatory action research data collected during two studies that took place from 2014 to 2019 in an urban centre in British Columbia, Canada, this analysis explores barriers preventing people who experience social and structural inequity the option to die-in-place. Participants include: (1) people positioned as structurally vulnerable on a palliative trajectory; (2) their informal support persons/family caregivers (e.g., street family); (3) community service providers (e.g., housing workers, medical professionals); and (4) key informants (e.g., managers, medical directors, executive directors). Data includes observational fieldnotes, focus group and interviews transcripts. Interpretive thematic analytic techniques were employed. RESULTS: Participants on a palliative trajectory lacked access to stable, affordable, or permanent housing, yet expressed their desire to stay 'in-place' at the end of life. Analysis reveals three main barriers impeding their 'choice' to remain in-place at the end of life: (1) Misaligned perceptions of risk and safety; (2) Challenges managing pain in the context of substance use, stigma, and discrimination; and (3) Gaps between protocols, policies, and procedures for health teams. CONCLUSIONS: Findings demonstrate how the rhetoric of 'choice' in regard to preferred place of death is ethically problematic because experienced inequities are produced and constrained by socio-structural forces that reach beyond individuals' control. Ultimately, our findings contribute suggestions for policy, programs and practice to enhance inclusiveness in palliative care. Re-defining 'home' within palliative care, enhancing supports, education, and training for community care workers, integrating palliative approaches to care into the everyday work of non-health care providers, and acknowledging, valuing, and building upon existing relations of care can help to overcome existing barriers to delivering palliative care in various settings and increase the opportunity for all to spend their end of life in the places that they prefer.

Nurse moral distress and cancer pain management: an ethnography of oncology nurses in India.

BACKGROUND: The majority of cancer patients in low- and middle-income countries (LMICs) present with late-stage, incurable disease, and basic tools to alleviate patient suffering-such as morphine-are often absent. Oncology nurses must cope with many challenges and may experience moral distress (MD), yet little research has examined this experience in LMICs. OBJECTIVE: This ethnographic study explored the experience of MD with oncology nurses (n = 37) and other providers (n = 22) in India and its potential relationship to opioid availability. METHODS: Data (semistructured interviews and field observations) were collected at a 300-bed government cancer hospital in urban South India over 9 months. Dedoose v.4.5.91 supported analysis of transcripts using a coding schema that mapped to an Integrated Model of Nurse Moral Distress and concepts that emerged from field notes. RESULTS: Primary themes included "We feel bad," "We are alone and afraid," "We are helpless," and "We leave it." A weak link between MD and opioid availability was found. CONCLUSIONS: Participants described significant work-related distress, but the moral dimension to this distress was less clear as some key aspects of the Integrated Model of Nurse Moral Distress were not supported. The concept of MD may have limited applicability in settings where alternative courses of action are unknown, or not feasible, and where differing social and cultural norms influence moral sensitivity. IMPLICATIONS FOR PRACTICE: Improving job-related conditions is prerequisite to creating an environment where MD can manifest. Educational initiatives in LMICs must account for the role of the oncology nurse and their contextual moral and professional obligations.

An ethnographic study of barriers to cancer pain management and opioid availability in India.

The world's global cancer burden disproportionally affects lower income countries, where 80% of patients present with late-stage disease and have limited access to palliative care and effective pain-relieving medications, such as morphine. Consequently, millions die each year with unrelieved pain. Objective. The objective of this study was to examine barriers to opioid availability and cancer pain management in India, with an emphasis on the experiences of nurses, who are often the front-line providers of palliative care. Methods. Fifty-nine participants were recruited using a purposive, snowball sampling strategy. Ethnographic data collection included in-depth, semistructured interviews (n = 54), 400+ hours of participant observation, and review of documents over 9 months at a government cancer hospital in South India. Systematic qualitative analysis led to identification of key barriers that are exemplified by representative quotes. Results. Morphine is more available at this study site than in most of India, but access is limited to patients seen by the palliative care service, and significant gaps in supply still occur. Systems to measure and improve pain outcomes are largely absent. Key barriers related to pain management include the role of nursing, opioid misperceptions, bureaucratic hurdles, and sociocultural/infrastructure challenges. Implications. Interventions must streamline process details of morphine procurement, work within the existing sociocultural infrastructure to ensure opioids reach patients most in need, target unexpected audiences for symptom management education, and account for role expectations of health care providers. Conclusion. Macro- and micro-level policy and practice changes are needed to improve opioid availability and cancer pain management in India.

Coordinating care and treatment for cancer patients.

Survival following a diagnosis of cancer is contingent upon an interplay of factors, some non-modifiable (e.g., age, sex, genetics) and some modifiable (e.g., volitional choices) but the majority determined by circumstance (personal, social, health system context and capacity, and health policy). Accordingly, mortality and survival rates vary considerably as a function of geography, opportunity, wealth and development. Quality of life is impacted similarly, such that aspects of care related to coordination and integration of care across primary, community and specialist environments; symptom control, palliative and end-of-life care for those who will die of cancer; and survivorship challenges for those who will survive cancer, differs greatly across low, middle and high-income resource settings. Session 3 of the 4th International Cancer Control Congress (ICCC-4) focused on cancer care and treatment through three plenary presentations and five interactive workshop discussions: 1) establishing, implementing, operating and sustaining the capacity for quality cancer care; 2) the role of primary, community, and specialist care in cancer care and treatment; 3) the economics of affordable and sustainable cancer care; 4) issues around symptom control, support, and palliative/end-of-life care; and 5) issues around survivorship. A number of recommendations were proposed relating to capacity-building (standards and guidelines, protocols, new technologies and training and deployment) for safe, appropriate evidence-informed care; mapping and analysis of variations in primary, community and specialist care across countries with identification of models for effective, integrated clinical practice; the importance of considering the introduction, or expansion, of evidence-supported clinical practices from the perspectives of health economic impact, the value for health resources expended, and sustainability; capacity-building for palliative, end-of-life care and symptom control and integration of these services into national cancer control plans; the need for public education to reduce the fear and stigma associated with cancer so that patients are better able to make informed decisions regarding follow-up care and treatment; and the need to recognize the challenges and needs of survivors, their increasing number, the necessity to integrate survivorship into cancer control plans and the economic and societal value of functional survival after cancer. Discussions highlighted that coordinated care and treatment for cancer patients is both a ' systems'challenge and solution, requiring the consideration of patient and family circumstances, societal values and priorities, the functioning of the health system (access, capacity, resources, etc.) and the importance assigned to health and illness management within public policy.

An interdisciplinary team communication framework and its application to healthcare 'e-teams' systems design.

BACKGROUND: There are few studies that examine the processes that interdisciplinary teams engage in and how we can design health information systems (HIS) to support those team processes. This was an exploratory study with two purposes: (1) To develop a framework for interdisciplinary team communication based on structures, processes and outcomes that were identified as having occurred during weekly team meetings. (2) To use the framework to guide 'e-teams' HIS design to support interdisciplinary team meeting communication. METHODS: An ethnographic approach was used to collect data on two interdisciplinary teams. Qualitative content analysis was used to analyze the data according to structures, processes and outcomes. RESULTS: We present details for team meta-concepts of structures, processes and outcomes and the concepts and sub concepts within each meta-concept. We also provide an exploratory framework for interdisciplinary team communication and describe how the framework can guide HIS design to support 'e-teams'. CONCLUSION: The structures, processes and outcomes that describe interdisciplinary teams are complex and often occur in a non-linear fashion. Electronic data support, process facilitation and team video conferencing are three HIS tools that can enhance team function.

Palliative care development: the Nepal model.

Over the last few years, Nepali and international colleagues have been collaborating in the development of palliative care services in Nepal. The program continues to move forward amid the considerable social and political difficulties facing Nepal. Although a number of individuals and organizations have been involved, the partnership between the International Network for Cancer Treatment and Research and the Nepal Palliative Care Group is described in this paper. This joint effort has been broadly based on the World Health Organization foundation measures for palliative care: governmental policy, opioid availability, and education.

A grounded theory guided approach to palliative care systems design.

As healthcare looks for new and innovative ways to deliver more services with less resources we are increasingly turning to informatics based solutions. However, the means by which information systems (IS) are both designed and implemented will impact how successful the system will be at enhancing care delivery. We believe a key component to successful IS design is the methodological rigor by which design requirements are gleaned and applied. This paper describes our use of a grounded theory (GT) guided methodology for designing an ontology of palliative care severe pain management. In this paper we illustrate how the methodological rigor of GT was applied to three palliative information sources to allow us to gain an understanding of how severe pain is managed. We then illustrate how that understanding was formalized into an ontology and applied to IS design of a computer based tool to enhance education around palliative care severe pain management.