Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care

Abstract

BackgroundAlthough attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives.MethodsWe conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo.ResultsThis study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change.ConclusionsThe values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings.

Program Assessment Framework for a Rural Palliative Supportive Service

“…Building upon inherent capacity is particularly important for ensuring that programs are embedded within the community and less vulnerable to the rapid cycles of change that are typical of modern healthcare. Previous research has illustrated how healthcare restructuring can have negative unintended consequences on palliative care capacity in rural communities 16,24…”

“…Rural care, based upon a generalist model, is ideally suited to such an approach. The high degree of connection between providers in rural communities has the potential to support person- and family-centered care 15,16,19. However, previous studies have indicated that challenges occur around providing 24/7 access and thus symptoms may not be treated in a timely manner.…”

“…Further, it is challenging for bereaved family members to have the energy or the expertise to know how to recommend improvements in the system. Yet, particularly in a rural community, a difficult death leaves a collective community memory that has far-reaching implications for how citizens view the quality of dying 16. Therefore, an essential part of rural palliative care improvement is having validated measurements and systematic data collection,19,25,30 as well as a knowledge translation plan that allows meaningful engagement of the rural stakeholders.…”

“…Difficult geographic and weather conditions make it challenging for residents to access care 14. Previous studies in Canada suggest that rural individuals have unique perspectives on quality of care and quality of life at end of life 15,16. Evaluative frameworks must account for the rural context.…”

“…RPaSS is a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness in rural areas. Previous studies have shown that rural family caregivers experience significant challenges in obtaining needed information and resources 16–18. Care is often fragmented and occurs too late in the palliative trajectory.…”