Socially, Culturally and Spiritually Sensitive Public Health Palliative Care Models in the Lower-income Countries: An Integrative Literature Review

INTRODUCTION

The need for palliative care (PC) is increasing globally. Each year, chronic illnesses including cancer, organ failure, dementia, HIV/AIDS and drug-resistant tuberculosis kill almost 41 million people worldwide.^[1] The lower-income countries (LICs) are worst affected accounting for 85% of deaths.^[1,2] PC, identified as a fundamental human right,^[3-5] aims to improve the quality of life (QOL) of patients and families affected by life-limiting illnesses that cause complex health-related suffering.^[6]

MATERIAL AND METHODS

An integrative literature review was undertaken. We followed the framework suggested by Whittemore and Knafl.^[16]

RESULTS

The initial search resulted in 3078 articles. The process of article selection is outlined in the Preferred Reporting Items for Systematic Reviews and Meta-Analysis flowchart ^[23] [Figure 1]. Thirty-seven articles were included in the study. Twenty-eight were narrative descriptions, three quantitative studies, one qualitative study, four mixed method studies and one commentary. The selected articles were from Bolivia,^[24] China,^[25,26] India,^[27-32] Kenya,^[33,34] Malawi,^[35,36] Nepal,^[37,38] Rwanda,^[39,40] Tajikistan,^[41] Tanzania,^[42,43] Uganda,^[44-49] Vietnam^[50,51] and Zambia.^[52] Eight articles^[13,53-59] described PC services in more than 1 country. Methodological quality of the selected articles ranged from 42.9% to 100%. No paper was excluded based on methodological quality because quality was not the objective of the review.

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Figure 1:

PRISMA flow chart showing selection of reviewed articles.

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Fourteen articles specified PC as a fundamental human right^{.[13,28,30-33,40,42,48,50,53-55,57]} Two main themes, (1) WHO-recommended public health framework and (2) sociocultural and spiritual support in PC were deductively derived and further categorised into five subthemes: (i) suitable PC policies; (ii) availability and accessibility of essential PC medicines; (iii) PC education for health professionals, policy makers and the public; (iv) implementation of PC at all levels of healthcare and (v) sociocultural and spiritual components. These characteristics are summarised in [Table 1].

DISCUSSION

PC remains a huge unmet public health need in most LICs.^[10] It is very limited in Sub-Saharan African countries, many Latin American countries and Southeast Asia region.^[24,59-61] Today, PC is an essential component of the Universal Health Coverage.^[62]

This review found that many LICs utilised the WHO-recommended public health strategies for PC and others have highlighted the importance of integrating, sociocultural and spiritual components. This is consistent with available evidence that a public health approach customised to the sociocultural and spiritual context enables effective provision of PC services even in resource-poor countries.^[2,35]

To achieve its required impact, PC must be supported by national policies.^[8,53] Despite embracing the public health approach, most LICs included in the review did not have PC policies in place. An important impediment was governments not prioritising the need for PC. For instance, despite the 2009 Cape Town Declaration committing to developing WHO-recommended public health strategies, some Sub-Saharan African countries failed to recognise the importance of PC.^[54] Political resolve is crucial to achieving adequate PC provision. Where available, PC policies have improved funding, ensured better access to medicines, enhanced education and training opportunities and made PC services accessible through all levels of healthcare and community.^{[38,41,46,52,56]} Moreover, PC policies support home-based care increasing the opportunity for home deaths and support family caregivers thus reducing hospital admissions and costs.^[8,10]

Availability of opioids, particularly morphine, is an indicator of a country’s capability to provide adequate PC.^[63] The majority of the world’s opioids are utilised by high-income countries.^[63] Only 1% of the 388 tons of morphine manufactured worldwide is consumed by LICs.^[64] Although an affordable PC Essential Package is available,^[63] this review found most LICs struggled to make opioids available. Where morphine is available, it is usually sustained-release and not immediate-release formulations.^[63] Knaul et al., in their Lancet Commission Report,^[63] made ‘emphatic recommendations’ to make immediate release morphine available in both oral and injectable formulations. Further, opioids should be available in communities, rather than only at cancer centres, big hospitals or city pharmacies.^[12] Regulatory hurdles, cost and lack of education and training hampered availability and accessibility to opioids in most LICs.^[63] Government’s role is thus identified as significant in addressing shortage of opioids.

Education and training are a pillar of public health.^[12] Although some LICs totally lacked PC education, most had some opportunities, many health professionals still lacked adequate knowledge and skills in pain relief and PC. Given that PC extends beyond symptom management, a PC curriculum must be unique to a country’s socioeconomic realities and cultural and spiritual context.^[12] PC education should be available through undergraduate medical and nursing education and as part of in-service training for health professionals, social workers and spiritual caregivers involved with patients with life-limiting illnesses.^[65] Specialist PC training should also be available for professionals at the community level so that quality services enable patients to stay at home.^[53] Media and public advocacy and family caregiver training are important avenues to create awareness, increase knowledge and change attitudes among policy makers, drug regulators, traditional healers, patients and families.^[12]

For public health strategies to be effective, PC should be implemented at all levels of healthcare and community.^[12,65] This review found that PC services in most LICs were available variably in hospitals, hospices, cancer and HIV/AIDS centres, faith-based institutions and communities including mobile services such as road side clinics and as home-based care. However, in some LICs, PC is available only in urban areas^[24,25] or not available at all.^[66] A narrative review exploring PC models in Sub-Saharan Africa^[67] recognised an urgent need for a public health approach to ensure equitable access. Identifying leaders, developing champions and integrating PC into community and across NCD programmes are the most cost-effective and sustainable approach.^[13,68]

Sociocultural and spiritual support is fundamental to PC, more so in countries, where medical resources are scarce but sociocultural systems are strong.^[69] Given the extent of poverty and fragile health systems in most LICs, PC cannot be effective without considering basic necessities such as food, clothing, shelter and financial assistance in addition to medical and nursing care. In India, for example, PC also had to ensure essential services such as clean drinking water, sanitation and primary education.^[70] In Pakistan, where PC was virtually non-existent, strong family-based culture and religious beliefs helped ensure psychosocial and spiritual support, however, the need for PC along with realistic opioid policies was identified to ensure a peaceful death.^[66] Respecting the sociocultural and spiritual needs during end of life and bereavement are emphasised in several LICs.^{[36,47,66,71,72]}

CONCLUSION

The WHO has recommended sustainable and cost-effective public health strategies to develop PC which is particularly realistic for LICs. It further recommends that the public health approach be customised to the sociocultural and spiritual context of individual countries. This review found that despite utilising the public health approach, many LICs encountered challenges in integrating all four strategies successfully.

A significant barrier, among others, included lack of awareness among policymakers and government leaders resulting in inadequate policies limiting access to essential PC drugs, inadequate PC education and training and inadequate implementation of PC. This review could inform a suitable PC model for many LICs.