School of Nursing, University of British Columbia Okanagan, Kelowna, BC, Canada.
BMC Med Ethics. 2011 Sep 28;12:19. doi: 10.1186/1472-6939-12-19.
Although 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.
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. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo.
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.
尽管人们对农村地区的医疗保健伦理越来越关注，但对农村姑息治疗的具体关注仍然在很大程度上研究不足和理论化不足。本研究的目的是从农村个人的角度更深入地了解告知良好姑息治疗的价值观。
我们在加拿大西部的四个农村社区进行了一项定性民族志研究。每个社区的人口都在 10000 人以下，距离专家姑息治疗治疗中心至少有三个小时的车程。数据收集历时两年，包括 95 次访谈、51 天的实地工作和 74 小时的直接参与者观察，研究人员陪同农村医疗保健提供者。使用 NVivo 对数据进行归纳分析，以确定最普遍的主题价值观，然后进行编码。
这项研究阐明了了解和被了解、在场和可用、社区和相互性的核心价值观，这些价值观为农村姑息治疗提供了伦理基础。这些价值观在整个研究社区和参与农村姑息治疗的利益相关者中都是一致的。虽然这些都是非常宝贵的价值观，但每一个都伴随着相应的伦理紧张。被了解往往会导致隐私的丧失。在场和可用会产生高度的期望和潜在的护理人员压力。社区和相互性的价值观会产生权利问题，给协调变革带来巨大挑战。
本研究确定的价值观为更好地理解农村医疗保健中出现的常见伦理紧张问题以及农村和城市姑息治疗之间的关键差异提供了机会。特别是，这些价值观揭示了有问题的卫生系统和健康政策变化。当倡议违反了农村成员根深蒂固的价值观和来之不易的应对其临终需求的能力时，会产生持久的负面影响。农村生活的社会结构变得脆弱。这些发现通过考虑支持农村环境中良好姑息治疗的关键价值观，为重新概念化医疗保健决策提供了一种方法。
