Palliative Care Culture and the Clinic: Perspectives from High to Low Resource Settings
Gary Rodin1 and Richard Sullivan2
1Global Institute of Psychosocial, Palliative and End-of-Life Care(GIPPEC), University of Toronto and Cancer Experience Program, Princess Margaret Cancer Centre, University Health Network,Toronto, Canada
2Institute of Cancer Policy & Conflict & Health Research Group, School of Cancer Sciences, King’s College London, UK
Correspondence to: Gary Rodin email: Gary.Rodin@uhn.ca
It has been argued that the interface between society, culture and health is one of the most important and most neglected dimensions in the practice of medicine (Napier et al. 2014). This is particularly true in the case of advanced and terminal disease, where the exclusive authority of a biomedical and techno-centric culture may paradoxically lead to poorer outcomes (Rodin et al. 2021). Such imbalance in high resource settings has been associated with aggressive anti-cancer treatment in individuals with advanced cancer, increasing the cost of cancer care (Cheung et al. 2015) with poorer survival (Majdinasab E et al. 2020), and worse quality of death (Prigerson, H et al. 2015). This approach in the treatment of cancer in low resource regions may unwisely direct scarce resources to approaches that are costly, unnecessary and associated with worse clinical outcomes (Pramesh CS et al. 2019).
Palliative care emerged from the community in response to the need for more holistic specialised care in medical settings for patients with advanced and terminal disease (Clark, D et al. 2007). A marker of its success is that it is now situated, particularly in high resource settings, within the mainstream of cancer care. The tensions that now exist at the interface of palliative care and oncology in these settings are highlighted in the papers by Lundeby et al and by Alcalde and Zimmermann. Lundeby et al suggest that the increasing demand for medical treatment and cure in high income countries, often supported by the medical industry, reinforces a tumour-centered focus at the expense of patient-centered care. They conclude that such forces have led to more anticancer and intensive therapy near the end of life, often with marginal effects on survival and patient well-being. However, they also suggest that the claim for a monopoly on excellence in palliative care by the palliative care community has also been an obstacle to collaboration. Lundeby et al. propose that practical patient-oriented care plans may be a way to individualize treatment with optimal collaboration and agreement between palliative care and oncology and to facilitate more routine earlier referral to palliative care of patients who might benefit most from it.
Alcalde and Zimmerman observe that stigma about palliative care persists in both patients and healthcare providers, despite strong evidence that its early integration into cancer care improves quality of life, mood, symptom control, and satisfaction with care. The negative associations for patients, caregivers and the public may be partly because palliative care was initially associated with death, hopelessness, dependency and the end of life. However, Alcalde and Zimmermann cite evidence demonstrating that the attitudes of patients and the public about palliative care are now significantly derived from their experiences in health care. Oncologists who refer patients late in the course of disease, when symptoms are poorly controlled and systemic treatments are exhausted, tend to reinforce the circular conclusion that referral to palliative care indicates treatment failure and proximity to the end of life. Solutions that Alcalde and Zimmermann propose to reverse negative attitudes about palliative care and the late referral to specialist healthcare teams include ensuring that there are adequate resources for palliative care teams to accept referrals and that screening mechanisms are in place so that early palliative care can be prioritised for those most in need. They also suggest that ongoing education of patients, health care providers and the public is needed to improve their understanding of the relevance and importance of early and integrated palliative care.
The question of when referral of patients with advanced disease from secondary care to tertiary care should occur is an important issue in high income countries. However, in many low income countries, specialised palliative care teams do not exist and the access to cancer care or palliative care typically occurs late in the course of the disease. In the context of these limitations, A paper by Harding and an Editorial by Banerjee focus on other solutions to scale up palliative care in low resource settings. They both note the urgency of their implementation, as only 10% of those who live in low income countries who need palliative care currently receive it and, by 2060, it has been estimated that more than 80% of all deaths with serious health related suffering will occur in low and middle-income countries.
Harding highlights advances that have been made in many low resource settings in research and in the delivery of palliative care. He cites evidence that demonstrates the benefit of nurse-led palliative care for patients on antiretroviral therapy in Kenya and for early integrated palliative care for cancer patients in Ethiopia. He emphasises the need for cross national partnerships in the development of clinical programs and research and for the use of locally validated outcome measures with hand scoring systems, for patients with low literacy and inability to complete self-report measures. Harding also underscores the importance of cultural sensitivity in communication with patients and with their families. He notes that while open communication to patients about prognosis is recommended in many Western countries, cultural values in Africa and many other regions dictate that such information should be disclosed instead to family members.
With regard to approaches to improve access to palliative care, Banerjee highlights complementary and sometimes competing models that have been applied in India. One is a community oriented model developed by palliative care practitioners in the state of Kerala in southern India, referred to as the Neighborhood Network of Palliative Care (NNPC). This model provides training to community minded workers and civic-minded citizens, supporting community ownership of palliative care and reaching a large patient pool. An alternative model developed in Delhi is CanSupport, which delivers home-based palliative care via Delhi's largest palliative care cancer NGO. This model highlights professional expertise and the preservation of privacy and discretion in settings where even the word cancer has enormous negative stigma. Banerjee notes that the quality of palliative care with the NNPC in Kerala has been shown to be high and that it has generated government participation and support. The CanSupport model in Delhi provides expert palliative care, although it has faced struggles with drug control policies regarding access to morphine and with obtaining state support for its activities. However, with adequate state support, Banerjee suggests that expert teams of palliative care specialists may work effectively together with nonprofessional community providers to create an inclusive and effective system of palliative care in India.
A second Editorial by Ntizimira et al highlights how differences in geopolitical and socioeconomic circumstances and culture are associated with different preferences for care with advanced disease and at the end of life. They argue that Western models of palliative care have been imposed on Africa and other low income countries, representing a form of “intellectual colonialism" that has not adequately taken into account values and practices in local settings. For example, whereas the loss of autonomy is a profound threat to many with advanced disease in Western settings, the African concept of Ubuntu suggests that dependency on others does not necessarily imply a loss of autonomy. This profound difference in the cultural meaning of reliance on others has implications for the delivery of palliative care and for the way in which support is provided for patients and families living with advanced disease. In that regard, Ntizimira et al emphasise that palliative care interventions in Africa and other settings must be decolonialised so that they are contextually relevant and tailored to the needs of patients and families to whom they are being delivered.
Taken together, these papers in this ecancer special issue elucidate the common and unique problems at the interface of society, culture and palliative care across all income settings. In all regions, stigma about palliative care and about death have led to delayed or limited access to palliative care. However, in high income countries, conflict has emerged between tertiary and secondary providers and late referral to specialised palliative care has been identified as a problem that leads to negative associations with palliative care and poor health outcomes. By contrast, the primary challenge in low income countries, has been ensuring access of those in need to any form of palliative care. A community-based model utilising nonprofessional health care providers to deliver palliative care had remarkable success in southern India, but may also be applicable in high income countries, particularly with regard to the provision of psychological and social care.
It seems clear that greater collaboration, communication and shared responsibility among the cultures of biomedicine, palliative care and the wider societies are needed to ensure access to effective and appropriate palliative care in diverse regions. Such care must be culturally sensitive and aim to diminish stigma and misconceptions about palliative care within both medicine and in the broader community. Holistic care of patients with advanced disease requires an optimal balance in health policy and in health care delivery between biomedicine and attention to the cultural context and to the social, psychological and spiritual domains of care. Indeed, the integration and delivery of low cost and humanistic interventions may be an essential step in achieving cost-effective solutions to improved access to palliative care in all regions of the world. We hope that this series will provoke discussion and stimulate collaboration to achieve this goal of universal access to patient-centered and culturally sensitive palliative care and to resolving tensions at the interface of palliative care, culture and the clinic.
References
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