Understanding dying as a focal point for defining an integrative approach to health and social care.

Long standing and poorly acknowledged tensions underpin what is considered success or failure in the field of health and social care. Such tensions threaten to undermine and limit much needed progress. In this article, I discuss the role of death and the dying process as a foundation upon which we might begin to address these tensions. I argue that through careful acknowledgement and attention to the stillness and silence of death we might better understand the impact the dying process has on the healthcare discourses that surround and orientate themselves to it. Training our eye to the rhythm of the human life course necessitates a greater appreciation of death and its influence in shaping a meaningful response to questions relating to care and the attention to human suffering. With this comes a move beyond a singular focus on the body as life's container, embracing human connections that transcend the physical and social worlds. Here our dependency and vulnerability are as much as what makes as human as our autonomy and rationality. Such an appreciation allows us to move away from values entrenched within notions of success and failure and towards a more integrative approach to health and social care.

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

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.

Social networks, social capital and end-of-life care for people with dementia: a realist review.

OBJECTIVES: (1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia. DESIGN: A realist review. DATA SOURCES: MEDLINE, EMBASE, CINAHL and grey literature. ANALYSIS: We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care. RESULTS: We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes. CONCLUSION: This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia. PROSPERO REGISTRATION NUMBER: CRD42018084524.

A public health approach to palliative care in the response to drug resistant TB: an ethnographic study in Bengaluru, India.

BACKGROUND: The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives. METHODS: In-depth ethnographic research was conducted in Bengaluru, India. Informal interactions and observations were recorded across a range of palliative care and tuberculosis treatment providers over a month-long period. In addition, ten individuals with Multidrug-Resistant Tuberculosis were asked for in-depth interviews, and five agreed. RESULTS: Multidrug-Resistant Tuberculosis caused a dynamic chain of events that transgress through physical and psychological domains to cause human suffering. Participants utilised support from their family and friends to build a network of care that was of therapeutic benefit. Informal care networks were similar to the holistic model of care practice by specialist palliative care services and represent an underused resource with enormous potential. CONCLUSION: Patient suffering is poorly addressed in current Tuberculosis treatment programmes. A community-based palliative care approach may extend peoples' support networks, helping to alleviate suffering. Further research on existing support structures and integration of these services into Tuberculosis control programmes is required.