Reframing understandings of justice in healthcare: Do we get the care we deserve?

Abstract

Good health is universally valued because it allows us to lead productive, connected and flourishing lives. Yet, as embodied creatures, our good health is inherently fragile and vulnerable to the effects of disease, illness, or injury. When confronted with these circumstances we depend on healthcare to restore and maintain our good health. As a societal institution, healthcare is important, therefore, because it provides care when people are vulnerable and dependent. Assuming this essential role also subjects the institution to the demands of justice. Traditionally, this meant ensuring people had equitable access to resources required to meet their health needs. This thesis challenges this longstanding assumption, arguing that justice in healthcare is not only about the distribution of resources, but also about promoting human flourishing. To argue that just healthcare promotes human flourishing the thesis first examines the central concept of ‘health’. Surveying the literature, it finds that health is predominantly associated with normal biological functioning that occurs in the absence of disease. Healthcare, however, is essentially about caring for people. People, who are constituted by their individual and collective values, goals, relationships and experiences rather than mere vessels of a particular disease, illness or injury. Healthcare that focusses solely on normal biological functioning risks neglecting those important factors that contribute to flourishing lives. This was reinforced when, as a registered nurse, I cared for Jack. He was an elderly man with a chronic and life-limiting illness. After receiving some of the most technologically advanced medical treatment available, Jack died alone in hospital, away from his wife and family. This thesis is framed around whether he received the healthcare he deserved. Having identified that a focus on biological functioning was one of the significant factors that affected Jack’s outcomes, the thesis recognises that options for care and treatment are influenced by health-related research and policy. Over the course of many years, scientific research has generated an expanding pool of resources and new biotechnologies to support and maintain good health. It also required an increasingly specialised healthcare workforce to prescribe, maintain and monitor their effectiveness. The thesis highlights that translating research outcomes into clinical practice is not a simple linear progression, but a process influenced by social, political and regulatory factors. Just as failing to focus on the broader values, goals and experiences of a person risks providing substandard healthcare, ignoring these broader factors also threatens the development and successful integration of new technologies into clinical practice. It is, therefore, a concern of justice. While offering the potential to lead longer and more active lives, integrating new biotechnologies into clinical practice also comes with significant economic costs. In Australia’s universal healthcare system, either all demands for healthcare resources must be met, or health policies that effectively ration them must be put in place. Deciding on preferable policy options to support an efficient, safe and productive healthcare system is an important role of government. The thesis highlights that health policies with a focus on the goals and values of the society that the system is designed to serve can also complement healthcare efficiency and productivity. These are factors at the core of a just system. Collectively, the social and political factors that influence research, policy and healthcare services affect just outcomes. It is the interactions between patients and clinicians however, that are the most visible manifestation of just healthcare. It is appropriate therefore, that outcomes are assessed at this point. Traditionally, understandings of healthcare justice in this context have focussed on ensuring an equitable allocation of healthcare resources and assumed that positive health outcomes would follow. Using the case of Jack to demonstrate why healthcare justice must focus on particular outcomes, the thesis offers a reframed understanding based on the neo-Aristotelian notion of human flourishing to achieve this. Applying this justice framework to Jack’s final hospital admission demonstrates that as his life was nearing its end, supportive comfort measures, rather than technologically-based invasive treatment in a critical care environment would have been more just. This is recognition that biological functioning was only one of the factors contributing to Jack’s flourishing. Other factors such as time with people who were dear to Jack, in an environment he controlled, were just as important. By neglecting these factors, the thesis concludes that Jack did not get the care he deserved.