Be known, be available, be mutual: A qualitative ethical analysis of social values in rural palliative care B Pesut, J Bottorff & CA Robinson. BMC Medical Ethics 2011, 12:19. Link.
__ The purpose of this study was to gain a deeper understanding
of the values informing good palliative care from rural individuals’
perspectives.
We 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.
This 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.
The 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.
__The 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
