Social Justice and Palliative Care
– Ms. Anu Savio Thelly, Pondicherry
The theme for ‘World Day of Social Justice’ 2023 is “Overcoming Barriers and Unleashing Opportunities for Social Justice”. Social justice is the view that everyone deserves equal economic, political and social rights and opportunities. It refers to ensuring justice regarding the equal distribution of wealth, opportunities, and privileges within a society.
While I was a student nurse caring for people with mental illness, I always wondered, ‘Why should we treat people and send them back to the conditions that make them sick?’. As time progressed and I became a registered nurse, I gradually understood that a patient’s social issues were, many a time, deliberately ignored by our fraternity. This may be because we nurses were unsure about how to assess and address these issues, or it may have been due to the lack of time we could devote to this need, or it may have simply been that these social aspects were not considered to have a significant association with the health and well-being of a person.
Once I forayed into palliative care, I realised that the social aspect of our patients and their families is also a crucial part of care. I realised that adequate income, education, housing, social support, transportation, employment, food security, healthcare access, etc., were proportionate to an individual’s quality of life (QoL). Please be aware that these critical factors profoundly affect a person’s overall health and well-being.
Uncovering and addressing these social determinants of health is therefore vital towards making meaningful strides in improving the QoL of our patients. As a home care palliative care nurse, on several occasions, I had to mobilise resources and enrol patients under various social welfare schemes, which called for multiple visits to the banks, government offices, etc. While the process was not easy to navigate, it was ultimately rewarding!
This experience got me thinking: ‘Who will help our palliative care professionals to understand the root causes of these health disparities and help us work towards creating equitable, just, and compassionate communities?’. It then struck me that our volunteers could help towards this.
During my tenure there, I saw issues in equity and social justice. I slowly began exploring the underprivileged, marginalised and transgender community in Pondicherry. This journey helped me unearth various inequities and inequality these patients suffer from in their lifetime. I also realised that such disadvantaged communities might experience differential treatment in healthcare, intentionally or unintentionally, directly or indirectly. Making this realisation, I understood our home care team could extend the needed services to many marginalised communities in Pondicherry with our volunteers’ support.
I am still learning the several culturally sensitive issues and am designing potential solutions to address these issues with my volunteer team. Inclusive and competent palliative care can become accessible by building on existing frameworks, ensuring services that are physically accessible and thinking creatively about the inclusion of marginalised communities. Proactively addressing these barriers to access and inclusion within existing palliative care services requires paying heed to the experiences of marginalisation. It is essential to be aware that even if we care for a hundred palliative care patients with the same disease and who are on similar medications, each person is unique, owing to their social background. Over time, I have strongly felt that a public health approach is impertinent to enable and enliven this inequitable provision. Therefore, palliative care teams must always consider the various social and commercial determinants of health while caring for their patients. This realisation also helped me understand the importance and benefits of a volunteer’s role in delivering holistic palliative care.
These social determinants of health shape the opportunities available to individuals and communities and are the foundation of health equity. Volunteers have the power to create bridges or reduce the gaps in one’s social background so that our patients can have a better quality of life. This support could manifest in organising food security, helping with transportation, helping their spouse find jobs, etc.
Every palliative care provider should be mindful of the association, power and impact of the social determinants on the quality of life of our patients and their families. As a nurse, my role does limit me from improving my patients’ social backgrounds significantly. However, I know that my team of volunteers can discharge this crucial role effectively to enhance the quality of life of our patients and help them achieve social justice. As healthcare providers, we should be able to collaborate hand-in-hand with our volunteers, especially our community volunteers to meet our patient’s social goals.
I urge and appeal to our palliative care community to sensitise and train volunteers to make them aware of how social determinants are associated with the health and well-being of a person. A trained army of volunteers is our best shot towards reducing this social injustice!
About the Author: Ms Anu Savio Thelly is a Nurse Consultant at the Department of Palliative Medicine, Mahatma Gandhi Medical College and Research Institute, Pondicherry. She has been active in Palliative Care for the past ten years.
Ms Anu has also been featured as a ‘Pioneering Nurse from around the world’ by St. Christopher’s Hospice, UK.