David Clark’s research while affiliated with University of Glasgow and other places

Background The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design An illuminative case study using a rapid evaluation methodology. Methodology Qualitative interviews, documentary analysis and observations of home care and community organising. Results We appraise a community palliative care programme in Kerala, India, using three linked ‘canvases’ of enquiry: (1) ‘complex’ multi-factorial community-based interventions and implications for evaluation; (2) ‘axiological’ orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify ‘objects of interest’ related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values.

Highlights  Palliative care policy is based predominantly on 'global North' perspectives  It lacks an empirical evidence base that connects policy to practice outcomes  It is structured around 'catastrophic' narratives and offers idealistic and aspirational pointers  It is largely disengaged and antagonistic orientation to existing health systems  The efficacy of palliative care policy could be enhanced via greater emphases on 'Global South' perspectives, 'assets-based' approaches and attention to pragmatic implementation. Abstract The importance of 'policy' within palliative care has steadily increased over the past 25 years. Whilst this has been welcomed within the palliative care field and seen as a route to greater recognition, we focus here on a more critical perspective that challenge the effectiveness of a 'policy turn' in palliative care. Applying Bacchi's "What's the Problem Represented to Be?" (WPR) framework to data from a systematic search, we address the research question, "in what ways has 'policy' been articulated in palliative care literature?". The paper describes the construction of 'the problem' context and reflects critically on the robustness and pragmatic utility of such representations. In particular, we identify five elements as prominent and problematic: 1) a lack of empirical evidence that connects policy to practice; 2) the dominance of 'Global North' approaches; 3) the use of a policy narrative based on 'catastrophe' in justifying the need for palliative care; 4) the use of idealistic and aspirational 'calls to action'; and 5) a disengaged and antagonistic orientation to existing health systems. We conclude by suggesting that the efficacy of palliative care policy could be enhanced via greater emphases on 'Global South' perspectives, 'assets-based' approaches and attention to pragmatic implementation. 3

Rehabilitation and palliative care are health care fields with separate histories but some recent convergences. Both have been identified as components within universal health coverage and each is the subject of a supportive World Health Assembly Resolution. We draw on the historiography of the two specialties, a recent systematic review of their engagement with each other as described in 62 studies, and critical policy perspectives to examine how rehabilitation and palliative care have been framed as potential partners in care. We examine the changing patient groups served by each field and the organizational forms that combined rehabilitation and palliative care (CRPC) may take. We explore the implications of such collaboration for the underlying goals and values of the two specialties, where each is the subject of changing definitions with differing responsibilities for regulating access to services as well as assuring and documenting quality. We conclude that to be effective CRPC must adapt to the highly segmented and specialized systems in which it is required to operate, recognizing that rehabilitation and palliative care are themselves co-constructors of such segmentation and specialization, but also potential agents for change.

Background: An increasing number of jurisdictions around the world are legalizing assisted dying. This creates a particular challenge for the field of palliative care, which often precludes producing premature death by the injection or self-administration of lethal medications upon a patient's voluntary request. A 2019 systematic scoping review of the literature about the relationship between palliative care and assisted dying in contexts where assisted dying is lawful, found just 16 relevant studies that included varied and combined stances ranging from complete opposition, to collaboration and integration. Building on that review, the present study was conducted in Quebec (Canada), Flanders (Belgium), and Oregon (USA), with the objective of exploring the relationship between palliative care and assisted dying in these settings, from the perspective of clinicians and other professionals involved in the practice. Methods: Semi-structured in-depth qualitative interviews were conducted with 29 professionals from Oregon [10], Quebec [9] and Flanders [10]. Participants were involved in the development of policy, management, or delivery of end of life care services in each of the jurisdictions. Data was analyzed thematically and followed a procedure of data immersion, and the construction of a thematic and interpretive account. Results: Three themes were identified from each of the locations. Flanders: the integrated approach; discontents in palliative care; concerns about liberalization of assisted dying laws. Oregon: the role of hospice; non-standardized protocols and policies; concerns about access to medications and care. Quebec: a contested relationship; the special situation of independent hospice; lack of knowledge about and access to palliative care. Conclusions: No clear and uniform relationship between palliative care and assisted dying can be identified in any of the three locations. The context and practicalities of how assisted dying is being implemented alongside access to palliative care need to be considered to inform future laws. We seek a better understanding of whether and in what ways assisted dying presents a threat to palliative care.

Medicalisation is a pervasive feature of contemporary end of life and dying in Western Europe and North America. In this article, we focus on the relationship between two specific aspects of the medicalisation of dying: deep continuous palliative sedation until death and assisted dying. We draw upon a qualitative interview study with 29 health professionals from three jurisdictions where assisted dying is lawful: Flanders, Belgium; Oregon, USA; and Quebec, Canada. Our findings demonstrate that the relationship between palliative sedation and assisted dying is often perceived as fluid and complex. This is inconsistent with current laws as well as with ethical and clinical guidelines according to which the two are categorically distinct. The article contributes to the literature examining health professionals’ opinions and experiences. Moreover, our findings inform a discussion about emergent themes: suffering, timing, autonomy and control – which appear central in the wider discourse in which both palliative sedation and assisted dying are situated, and which in turn relate to the wider ideas about what constitutes a ‘good death’.

Community-based palliative care services and their integration with public health systems are of considerable contemporary interest. However, the conflicts that emerge in such a complex organizational field comprising multiple stakeholders with diverse interests remain under-examined. Our analysis of community-based palliative care in Kerala identifies four 'logic conflicts' that indicate competing frames of reference in an organizational field. These conflicts shape decision-making and coordination and manifest as: 1) professional versus community logics, 2) centralized versus decentralized governance logics, 3) generalist versus specialist care logics, 4) charity versus rights-based logics. We also identify two mechanisms-forming coalitions and fostering plurality-by which actors manage these conflicting logics. We discuss contributions to public health palliative care conversations and implications for nurturing and sustaining care communities.

We explore how and why the Liverpool Care Pathway (LCP) for the dying patient was transferred to 20 countries beyond the UK, and with what consequences for policy and practice. Our paper synthesises findings from 95 publications contained in a historical narrative literature review on the implementation of the LCP outside the United Kingdom, alongside data from 18 qualitative interviews with 19 key actors involved with the LCP in 14 countries. We use the review to explore the timelines and patterns of development and implementation in the specific countries, to consider what forms of research and evaluation about the LCP were undertaken to establish its effectiveness, and to summarise the resulting findings and their consequences. We use the interviews to gain insights into the elements, processes and dynamics that shaped the transfer and translation of the LCP from one location to another, across national boundaries. Using six questions from the policy transfer literature we then explain who were the key actors involved; what was transferred; from where lessons were drawn; the different degrees of transfer that took place; what restricted or facilitated transfer; and how transfer was related to ‘success’ or ‘failure’. We conclude that the spread of the LCP took place mostly in prosperous countries, and was sustained over around 15 years. It took in differing geographies and cultures, and a variety of linguistic, policy and practice contexts. If it did not succeed in a wider transformational goal, it appears to have been well received and perceived as beneficial in many contexts, largely avoiding accusations of mis-use and harm that had occurred in the UK, and in some cases fostering a sustained international collaboration and ongoing use of local variants, even after withdrawal in its country of origin in 2014.

Background: The growing interest in tracking the global development of palliative care provision is not matched by research on the development of palliative care services specifically for children. Yet it is estimated that worldwide, 21 million children annually could benefit from the provision of palliative care. We report on a global study of children’s palliative care development and offer suggestions for further improvement in design and method. Methods: Primary data on the level of children’s palliative care development in 2017 was collected from in-country experts through a specific question in an online questionnaire that sought to measure the overall level of palliative care provision globally. Countries were assigned to one of six categories on the basis of the responses obtained. Conflicting responses from the same country were resolved with reference to a hierarchy of preferred respondents. Results: Our data allowed the categorisation of 113 countries, accounting for 65% of the global population aged under 20. Number of countries (% of global child population) in each category were as follows: 1) no known activity, 21 (4%); 2) capacity-building, 16 (24%); 3a) isolated provision, 55 (30%); 3b) generalized provision, 5 (1%); 4a) preliminary integration into mainstream provision, 14 (8%); 4b) advanced integration, 7 (2%). Conclusions: Children’s palliative care at the highest level of provision is available in just 21 countries, accounting for fewer than 10% of the global population aged under 20. It is concentrated in high income settings, whilst the majority of the global need for such care is in low- and middle-income countries. Our study is a useful tool for global advocacy relating to children’s palliative care and a stimulus for the creation of improved indicators to measure it at the country level.

Responding to the enormous unmet need for palliative care has been very challenging. In the over 50 years since the opening of St. Christopher’s Hospice in the United Kingdom there has been a slow but steady growth in programmes that serve the needs of those with life-threatening illness. There are now approximately 25,000 hospice or palliative care service units worldwide (see Pg 57). Parallel to the development of services, we have seen in Chapter 3 the need for access to palliative care education, and at the same time access to essential palliative care medications.