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This chapter discusses the genealogy and development of the ‘access abyss in palliative care and pain relief’ affecting 80 per cent of the world’s people. It argues that the larger context is an epistemic abyss constituted by incomplete information about the need for controlled medicines for pain relief, and that decades of drug policy based on supply control have prevented development of the necessary knowledge base in many countries. Transnational civil society organisations are working to map and bridge this abyss through education, advocacy and action. Deeper (original) systemic and tensions in the original multilateral drug control narrative produced the current epistemic/clinical abysses and now provide space for more participatory civil society involvement. Where the earlier narrative focussed on a fear-based drive to discipline and punish non-medical use of controlled substances, the evolving (and still contested) ‘world drug problem’ narrative foregrounds person centred, human rights based, public health approaches to drug policy that explicitly support improved access to internationally controlled essential medicines. Recommended policies can only be operationalised through a concerted ‘all hands on deck’ effort guided by the international law principle of ‘mutual and shared responsibility’ for improving access within the context of the 2030 Agenda for Sustainable Development. This calls for enhanced communication, concerted advocacy, collaboration and pluralist praxis to fill the often gaping abyss between ‘black letter law’ — what is actually written in the drug control conventions — and how member states learn to interpret and operationalise it.

The wake of the novel coronavirus (COVID-19) pandemic had caused substantial disruptions to the usual delivery of healthcare services. This is because of restrictive orders that were put in place to curb the spread of the infection. Palliative care services in Brunei also face challenges to deliver effective services during this period. However, the impact of advanced illnesses on patients' health and end-of-life care are issues that cannot be planned, postponed or cancelled. Hence, the palliative care team needs to continue to deliver effective palliative care services. As Brunei faced its second pandemic wave in August 2021, crucial adaptations were made to ensure palliative care service was not disrupted. This reflective case study aims to discuss the adaptations made in providing palliative care during this era of disruptions.

The growing numbers of terminally ill and dying in prison has high economic and moral costs as global correctional systems and the society at large. However, to date little is known about the extent to which palliative and end-of-life care is infused within global prison health care systems. The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation.

A content analysis was conducted of the existing peer-reviewed literature on palliative and end-of-life care in prison. English-language articles were located through a comprehensive search of peer-reviewed journals, such as Academic Search Premier Literature databases using differing combinations of key word search terms, “prison,” “palliative care,” and “end-of-life care.” A total of 49 studies published between 1991 and 2013 met criteria for sample inclusion. Deductive and inductive analysis techniques were used to generate frequency counts and common themes related to the methods and major findings.

The majority (n=39) of studies were published between 2001-2013 in the USA (n=40) and the UK (n=7). Most were about US prison hospice programs (n=16) or barriers to providing palliative and end of life care in prisons (n=10). The results of the inductive analysis identified common elements of promising practices, which included the use of peer volunteers, multi-disciplinary teams, staff training, and partnerships with community hospices. Obstacles identified for infusing palliative and end-of-life care in prison included ethical dilemmas based on custody vs care, mistrust between staff and prisoners, safety concerns, concern over prisoners’ potential misuse of pain medication, and institutional, staff, and public apathy toward terminally ill prisoners and their human rights to health in the form of compassionate and palliative care, including the use of compassionate release laws.

Implications for future research that foster human rights and public awareness of the economic and moral costs of housing the sick and dying in prisons. More research is needed to document human rights violations as well as best practices and evidence-based practices in palliative and end-of-life care in prisons. Future studies should incorporate data from the terminally ill in prison, peer supports, and family members. Future studies also should employ more rigorous research designs to evaluate human rights violations, staff and public attitudes, laws and policies, and best practices. Quantitative studies that use experimental designs, longitudinal data, and multiple informants are needed. Qualitative data would allow for thick descriptions of key stakeholders experiences, especially of the facilitators and barriers for implementing policy reform efforts and palliative care in prisons.

This review provides a foundation on which to build on about what is known thus far about the human right to health, especially parole policy reform and infusing palliative and end-of-life care for the terminally ill and dying in prisons. This information can be used to develop or improve a new generation research, practice, policy, and advocacy efforts for that target terminally ill and dying in prison and their families and communities.

There are significant social implications to this review. From a human rights perspective, the right to freedom from torture and cruel and unusual punishment is a fundamental human right along with prisoners’ rights for an appropriate level of health care. These rights should be guaranteed regardless of the nature of their crime or whether they are in a prison placement. The information provided in this review can be used to educate and possible transform individual's and society's views toward the terminally ill and dying who are involved in the criminal justice system.

This paper extends the extant literature by using both quantitative and qualitative analysis methods to organize, summarize, and critically analyze the international literature on palliative care and end of life care in prison. This review is designed to increase awareness among the international community of the pain and suffering of the terminally ill in prison and the facilitators and barriers to providing them compassionate care while in custody.

A detailed strategic planning process is presented that entails several beneficial and effective strategies and goals for interdisciplinary academic, clinical and/or service departments. This strategic planning process emerged due to the need to adapt to organizational and structural changes within an institution of higher medical education.

A strategic planning framework was developed, along with an inclusive process that used an appreciative inquiry methodology, to examine past and present strengths and potentials in a diverse, interdisciplinary family and community medicine department.

The success of this strategic plan and relevant approaches is evidenced by the development of a community medicine course, student-run free clinic to meet the needs of underserved patients, an increase in primary care research and increase in student choice of family medicine as specialty choice.

The described strategic planning process serves as an illustration of the benefits and limitations of identified approaches and outcomes useful for other departments and organizations undertaking similar efforts.

The integration of multiple goals and a shared vision in a strategic planning process leads to successful program development and meeting the needs of future healthcare professionals and the patients and communities they serve. The authors have provided a model for such success.

The impact of population ageing is significant, multifaceted and characterised by frailty and multi-morbidity. The COVID-19 pandemic has accelerated care pathways and policies promoting self-management and home-based care. One under-researched area is how patients and family caregivers manage the complexity of end-of-life therapeutic medicine regimens. In this position paper the authors bring attention to the significant strain that patients and family caregivers experience when navigating and negotiating this aspect of palliative and end-of-life care.

Focussing on self-care and organisation of medicines in the United Kingdom (UK) context, the paper examines, builds on and extends the debate by considering the underlying policy assumptions and unintended consequences for individual patients and family care givers as they assume greater palliative and end-of-life roles and responsibilities.

Policy makers and healthcare professionals often lack awareness of the significant burden and emotional work associated with managing and administering often potent high-risk medicines (i.e. opioids) in the domiciliary setting. The recent “revolution” in professional roles associated with the COVID-19 pandemic, including remote consultations and expanding community-based care, means there are opportunities for commissioners to consider offering greater support. The prospect of enhancing the community pharmacist's medicine optimisation role to further support the wider multi-disciplinary team is considered.

The paper takes a person-focused perspective and adopts a holistic view of medicine management. The authors argue for urgent review, reform and investment to enable and support terminally ill patients and family caregivers to more effectively manage medicines in the domiciliary setting. There are clear implications for pharmacists and these are discussed in the context of public awareness, inter-professional collaboration, organisational drivers, funding and regulation and remote care delivery.

The purpose of this paper is to investigate key milestones in development of standards of human rights to health care in particular context of addressing palliative care, relevant efforts of advocacy in past decade and future area of growth.

In this study, analysis of human rights and its standards in context of palliative care has been provided through the lens of freedom from ill treatment and torture, right to health care and older persons’ and children’s rights.

Findings of this study highlighted significant developments in this area which include following: first treaty of human rights which explained right to palliative care; first resolution on palliative care by World Health Assembly; special rapporteur’s report focussed on denial of pain; and addressing issue of controlled medicine availability in special session of UN General Assembly.

Human rights standards and their development in context of palliative care have been most significant in relation to freedom from ill treatment and torture, right to health care and older persons’ rights. Further work is required in context of children’s rights and treaty bodies of human rights need to consistently address state obligations towards palliative care.

To begin a process of understanding how palliative care organisations are configured to enable innovative multidisciplinary patient care teams and their management in an uncertain, complex and dynamic environment.

A range of literature was reviewed to suggest configuration and characteristics that were tested using semi‐structured interviews with the senior medical staff member at each of three Australian case study organisations. Data gathered from these interviews was supplemented with data gathered from semi‐structured interviews with multidisciplinary management teams and patient care teams dealing with inpatients and home‐care patients.

A hybrid configuration is suggested, based on Mintzberg's typology of organisations. Responses from interviews modify some characteristics of the suggested configuration, though generally appearing to support it. Characteristics of the external and internal environments are described.

Palliative care is rarely written off outside the healthcare literature and comparatively infrequently within it. Configuration is used to suggest the characteristics of innovative teams in an uncertain, dynamic, complex environment. The use and management of multidisciplinary patient care teams in palliative care offers interesting insights for a broad range of organisations.

A contribution to the discourse on the relationship between configuration and innovation based in organisations without commercial imperative, delivering multi‐level care for and by people involved in the end‐of‐life process.

The paper continues a line of publications, beginning in 2002, describing the management of innovation in multidisciplinary palliative care teams. The originality and value of this paper and this line of research is in taking a management view of a unique environment that offers insights and lessons to a broad range of organisations.

Millions of people die of chronic diseases within inpatient settings annually in the United States, despite patient preferences for dying at home. This medicalization of dying has received social and economic critiques for decades. This chapter offers a further analysis to these critiques by examining the ecological impacts of inpatient end-of-life care on the natural environment and occupational and public health.

We compare the ecological health outcomes of medical care in three inpatient units (conventional cancer unit, palliative care ward, and hospice facility) using ethnographic observations, semi-structured interviews, and institutional records on medical supply use, waste generation, and pharmaceutical administration and disposal.

Care provided on all three medical units had significant socioecological impacts. Cumulative impacts were greatest on the conventional unit, followed by palliative care, and lowest on the hospice unit. Variations in impacts mirrored differences in dependence on material interventions, which arose from variations in patient needs, institutional policies, and nursing cultures between the three units.

Social and economic concerns have been major drivers in reforming end-of-life medical care, and our analysis shows that ecological concerns must also be considered. Transitioning terminal patients to less materially intensive modes of care when appropriate could mitigate ecological health impacts while honoring patient preferences.

This chapter describes how the medicalization of dying has converged with institutional policies, practices, and actors to increase the negative consequences of medical care, and recognizes that the far-reaching impacts of clinical decisions make the provision of medical care a socioecological act.

A nursing home is a place that is familiar with death, since many older adults will spend the latter part of their lives in such a setting. However, research on this topic is still limited, especially in Indonesia. The purpose of this paper is to explore the barriers to successful palliative and, more generally, end-of-life care (EOLC) for older adults in nursing homes and to explore nurses’ views on the subject.

The study is of a qualitative nature and it employs a phenomenological approach. In-depth interviews with 15 nurses who taken care of older adults in a nursing home were conducted. The data were analysed using thematic content analysis.

Barriers to effective EOLC include lack of knowledge, ineffectual communication and insufficient resources.

Better policies are needed, especially in training related to palliative/EOLC subjects and equitable distribution of professional health workers to overcome the barriers. The government should also encourage collaboration involving hospitals, Puskesmas (Health Centre Services), community and resident care settings in sharing knowledge and skills, especially for nurses.

The barriers identified in palliative and EOLC have been found to be almost identical to those encountered in other health services.

The purpose of this paper is to use a descriptive case study to establish how collaboration, innovation and knowledge‐management strategies have scaled‐up learning and development in rural, remote and other resource‐constrained Canadian delivery settings.

Intervention design was realized through a one‐time, collaborative, national capacity‐building project. A project portfolio of 72 sub‐projects, initiatives and strategic activities was used to improve access, enhance quality and create capacity for palliative and end‐of‐life care services. Evaluation was multifaceted, including participatory action research, variance analysis and impact analysis. This has been supplemented by post‐intervention critical reflection and integration of relevant literature.

The purposeful use of collaboration, innovation and knowledge‐management strategies have been successfully used to support a rapid scaling‐up of learning and development interventions. This has enabled enhanced and new pan‐Canadian health delivery capacity implemented at the local service delivery catchment‐level.

The intervention is bounded by a Canada‐specific socio‐cultural/political context. Design variables and antecedent conditions may not be present and/or readily replicated in other nation‐state contexts. The findings suggest opportunities for future integrative and applied health services and policy research, including collaborative inquiry that weaves together concepts from adult learning, social science and industrial engineering.

Scaling‐up for new capacity is ideally approached as a holistic, multi‐faceted process which considers the total assets within delivery systems, service catchments and communities as potentially being engaged and deployed.

The Pallium Integrated Capacity‐building Initiative offers model elements useful to others seeking theory‐informed practices to rapidly and effectively scale‐up learning and development efforts.