Palliative Justice Post-COP27.

The climate crisis is a planetary existential threat, disproportionately affecting the poorest populations worldwide. People in low- and middle-income countries (LMICs) experience the most detrimental consequences of climate injustice, endangering their livelihoods, safety, overall wellbeing, and survival. Although the 2022 United Nations Climate Change Conference (COP27) put forth several internationally salient recommendations, the outcomes fall short to efficiently tackle the suffering that exists at the intersection of social and climate injustice. Individuals with serious illness living in LMICs have the highest burden of health-related suffering globally. In fact, more than 61 million people experience serious health-related suffering (SHS) each year that is amenable to palliative care. Despite this well-documented burden of SHS, an estimated 88-90% of palliative care need is unmet, the majority in LMICs. To equitably address suffering at individual, population, and planetary levels in LMICs, a palliative justice approach is crucial. The interplay of human and planetary suffering requires that current planetary health recommendations be expanded to incorporate a whole-person and whole-people perspective that recognizes the need for environmentally conscious and community-based research and policy initiatives. Conversely, palliative care efforts should incorporate planetary health considerations to ensure sustainability in capacity building and service provision. In sum, the optimal health of the planet will remain elusive until we can holistically recognize the value of relieving all suffering due to life-limiting conditions, as well as the value in preserving the natural resources of countries in which all people are born, live, age, suffer, die, and grieve.

Towards a global One Health index: a potential assessment tool for One Health performance.

BACKGROUND: A One Health approach has been increasingly mainstreamed by the international community, as it provides for holistic thinking in recognizing the close links and inter-dependence of the health of humans, animals and the environment. However, the dearth of real-world evidence has hampered application of a One Health approach in shaping policies and practice. This study proposes the development of a potential evaluation tool for One Health performance, in order to contribute to the scientific measurement of One Health approach and the identification of gaps where One Health capacity building is most urgently needed. METHODS: We describe five steps towards a global One Health index (GOHI), including (i) framework formulation; (ii) indicator selection; (iii) database building; (iv) weight determination; and (v) GOHI scores calculation. A cell-like framework for GOHI is proposed, which comprises an external drivers index (EDI), an intrinsic drivers index (IDI) and a core drivers index (CDI). We construct the indicator scheme for GOHI based on this framework after multiple rounds of panel discussions with our expert advisory committee. A fuzzy analytical hierarchy process is adopted to determine the weights for each of the indicators. RESULTS: The weighted indicator scheme of GOHI comprises three first-level indicators, 13 second-level indicators, and 57 third-level indicators. According to the pilot analysis based on the data from more than 200 countries/territories the GOHI scores overall are far from ideal (the highest score of 65.0 out of a maximum score of 100), and we found considerable variations among different countries/territories (31.8-65.0). The results from the pilot analysis are consistent with the results from a literature review, which suggests that a GOHI as a potential tool for the assessment of One Health performance might be feasible. CONCLUSIONS: GOHI-subject to rigorous validation-would represent the world's first evaluation tool that constructs the conceptual framework from a holistic perspective of One Health. Future application of GOHI might promote a common understanding of a strong One Health approach and provide reference for promoting effective measures to strengthen One Health capacity building. With further adaptations under various scenarios, GOHI, along with its technical protocols and databases, will be updated regularly to address current technical limitations, and capture new knowledge.

Integrated management of non-communicable diseases in low-income settings: palliative care, primary care and community health synergies.

Palliative care is recognised as a fundamental component of Universal Health Coverage (UHC), which individual countries, led by the United Nations and the WHO, are committed to achieving worldwide by 2030-Sustainable Development Goal (SDG) 3.8. As the incidence of non-communicable diseases (NCD) in low-income and middle-income countries (LMICs) increases, their prevention and control are the central aspects of UHC in these areas. While the main focus is on reducing premature mortality from NCDs (SDG 3.4), palliative care is becoming increasingly important in LMICs, in which 80% of the need is found. This paper discusses the challenges of providing comprehensive NCD management in LMICs, the role of palliative care in addressing the huge and growing burden of serious health-related suffering, and also its scope for leveraging various aspects of primary care NCD management. Drawing on experiences in India and Nepal, and particularly a project on the India-Nepal border in which palliative care, community health and primary care-led NCD management are being integrated, we explore the synergies arising and describe a model where palliative care is integral to the whole spectrum of NCD management, from promotion and prevention, through treatment, rehabilitation and palliation. We believe this model could provide a framework for integrated NCD management more generally in rural India and Nepal and also other LMICs as they work to make NCD management as part of UHC a reality.

Multidimensional needs of patients living and dying with heart failure in Kenya: a serial interview study.

BACKGROUND: Heart failure is an emerging challenge for Sub Saharan Africa. However, research on patients' needs and experiences of care is scarce with little evidence available to support and develop services. We aimed to explore the experiences of patients living and dying with heart failure in Kenya. METHODS: We purposively recruited 18 patients admitted with advanced heart failure at a rural district hospital in Kenya. We conducted serial in depth interviews with patients at 0, 3 and 6 months after recruitment, and conducted bereavement interviews with carers. Interviews were recorded, transcribed into English and analyzed using a thematic approach, assisted by Nvivo software package. RESULTS: Forty-four interviews were conducted. Patients experienced physical, psychosocial, spiritual and financial distress. They also had unmet needs for information about their illness, how it would affect them and how they could get better. Patients experience of and their interpretation of symptoms influenced health care seeking. Patients with acute symptoms sought care earlier than those with more gradual symptoms which tended to be normalised as part of daily life or assumed to be linked to common treatable conditions. Nearly all patients expected to be cured and were frustrated by a progressive illness poorly responsive to treatment. Accumulating costs was a barrier to continuity of care and caused tensions in social relationships. Patients valued information on the nature of their illness, prognosis, self-care, lifestyle changes and prevention strategies, but this was rarely available. CONCLUSIONS: This is the first in-depth study to explore the experiences of people living with advanced heart failure in Kenya. This study suggests that patients would benefit from holistic care, such as a palliative approach that is aimed at providing multidimensional symptom management. A palliative approach to services should be provided alongside chronic disease management aimed at primary prevention of risk factors, and early identification and initiation of disease modifying therapy. Further research is needed to determine best practice for integrating palliative care for people living and dying with heart failure.

Integrating palliative care into national health systems in Africa: a multi-country intervention study.

BACKGROUND: The WHO is calling for the integration of palliative care in all health care settings globally. METHODS: A 3.5-year program was implemented in 12 government hospitals, three each in Kenya, Rwanda, Uganda and Zambia. A four-pillared approach of advocacy, staff training, service delivery strengthening and international and regional partnership working was utilized. A baseline assessment was undertaken to ascertain needs, and 27 indicators were agreed to guide and evaluate the intervention. Data were also collected through surveys, interviews and focus groups. RESULTS: Palliative care was integrated into all 12 hospital settings to various degrees through concurrent interventions of these four approaches. Overall, 218 advocacy activities were undertaken and 4153 community members attended awareness training. 781 staff were equipped with the skills and resources to cascade palliative care through their hospitals and into the community. Patients identified for palliative care increased by a factor of 2.7. All 12 hospitals had oral morphine available and consumption increased by a factor of 2.4 over two years. Twenty-two UK mentors contributed 750 volunteer days to support colleagues in each hospital transfer knowledge and skills. CONCLUSIONS: Integration of palliative care within different government health services in Africa can be achieved through agreed interventions being delivered concurrently. These include advocacy at Ministry, Provincial and District level, intensive and wide-ranging training, clinical and support services supported by resources, including essential medicines, and an investment in partnerships between hospital, district and community.

Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies.

BACKGROUND: Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa. METHODS: Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviews with key informants, observations of clinical encounters and the local health and social care context, and routine data from local reports and statistics. RESULTS: We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home.In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks. CONCLUSIONS: Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision.

Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews.

OBJECTIVE: To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. DESIGN: Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. SETTING: South east Scotland. PARTICIPANTS: 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). RESULTS: Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the "Why us?" response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. CONCLUSIONS: Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.