New public health approaches to palliative care, a brave new horizon or an impractical ideal? An Integrative literature review with thematic synthesis

Abstract

Access to palliative care for marginalized communities is frequently problematized as a major challenge facing palliative care services. The traditional response of asking what services can do for the disadvantaged has been invigorated by a new wave of public health measures that embrace death and dying as social processes and ask, what can be done together with such communities as partners working in palliative care. Such work has generated a significant amount of academic, social and political interests over the last 20 years; however, we are yet to see a consistent and sustained change in approach from providers. We argue that this is due to inherent tensions that arise when modelling death, dying and loss as a unified and shared social process. Unresolved tensions destabilize the theoretical foundations and risk misrepresentation of core philosophies. In this integrative review of 75 articles, we present previously undiscussed areas of contention drawing from a pan-disciplinary field of theoretical and empirical evidence. We conclude that new public health approaches lack a consistent and unified theoretical approach. From philosophical, ontological and existential ideas relating to how different stakeholders conceptualize death, to the processes by which communities are motivated and their constituent members empowered through responsibilized notions of duty and reciprocity, there is little acknowledgement of the complex tensions at hand. Increasing academic and political initiative alone is not enough to progress this movement in a manner that achieves its full potential. Instead, we must pay greater attention to the tensions described. This article aims to work with such tensions to better define the landscape of collective moral responsibility in end-of-life care. We believe that this is crucial if palliative care is to avoid becoming a technical speciality with community and communitization reduced to a mere technical solution to more profound questions.

Scaling out a palliative compassionate community innovation: Nav-CARE

“…This review concluded that strong leadership is critical to helping address these tensions. 35 In this study, organizations that had a successful Nav-CARE implementation were already well connected to their community having built a strong network of relationships. 39 that clearly outline the role and required preparation.…”

Public Health Perspective of Primary Palliative Care: A Review through the Lenses of General Practitioners

“…[ 8 ] The public health approach to palliative care is premised on the principle of community engagement, in which people in society own the responsibility of caring for each other. [ 18 ] This approach empowers people in the community to support patients and families facing the end of life by responding to the needs and wishes of the dying patients and their families, creating leaders from within the community for sustainability, developing collaborations with community groups and stakeholders, and working in alignment with healthcare professionals. [ 12 , 18 - 20 ]…”

Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues

“…A health promotion approach to palliative care is gaining traction internationally in response to issues related to aging populations and a professionalization of end-of-life (EoL) care. 1 – 3 Based on the notion that the EoL primarily is a social issue that concerns everyone, health promotion approaches to palliative care often work with communities to increase engagement in EoL issues to enhance a sense of control and support for those who are dying, grieving, or are providing care. 2 , 4 – 6 Although the relevance of these initiatives is increasingly recognized, researchers in this field have pointed to the lack of evaluations of the impact of this approach.…”

“… 1 – 3 Based on the notion that the EoL primarily is a social issue that concerns everyone, health promotion approaches to palliative care often work with communities to increase engagement in EoL issues to enhance a sense of control and support for those who are dying, grieving, or are providing care. 2 , 4 – 6 Although the relevance of these initiatives is increasingly recognized, researchers in this field have pointed to the lack of evaluations of the impact of this approach. 3 , 7 , 8 Furthermore, evaluations of community-based initiatives are particularly lacking.…”