2020; Volume 21, No 9, September
These are excerpts from a webinar held in August titled, “Palliative Care – The Solutions We Never Knew We Had — as an effective response to COVID-19 and health-system strengthening,” organized by The Public Health Foundation of India and Pallium India.
A Pandemic-Induced Journey into Palliative Care
Harsh Vardhan Sahni
By Harsh Vardhan Sahni
Consultant, Pallium India
Jumping from working on public health with management consultants to a grassroots NGO, Pallium India, I always struggled with how palliative care defied a quick and comprehensive definition. The more I learned, the more I realized that as a branch of medicine it adapts itself to the patient and environment...different forms of care for different kinds of needs.
The more I saw it unfold, I realized that palliative care is fundamentally the compassionate practice of medicine.
It took a pandemic...
The World Health Organization counts palliative care as one of the five essential components of comprehensive health care. However, it took a global pandemic for a lot of us to see how essential it is. Nobody trained doctors to face so much suffering and mortality, nobody planned to get so sick so suddenly, and, above all, nobody told loved ones how to get closure as they witnessed suffering and death from an enforced distance, encased in face shields.
Trained or not, providers the world over now have to practice palliative care: have difficult conversations; use symptom relief measures for intense breathlessness, agitation, and delirium; and learn to take care of themselves and their families when yet another patient passes away.
Had medical education, training, and practice prioritized palliative care, the physical, emotional, social, and spiritual weight of this pandemic would perhaps have been easier for patients, providers, and communities to cope with.
Everyone has a role
in reducing suffering
Every person has a role they can play to reduce suffering.
At an individual level, doctors can learn skills and tools:
- Essential medicines for relief from distressing symptoms, such as pain.
- Counselling to comfort patient and family — build trust and understanding.
- Appropriate end-of-life care and shared decision-making principles, so that medicine is not something that is “done” to the family, but something family members partake in.
Organizations like Pallium India offer short courses on such topics free of charge.
At a community level, we can educate ourselves about palliative care provisions — options available if someone falls very sick or nears end of life. This knowledge can translate into creating links to services when the need arises.
At a systemic level, compassion can be induced in ways big and small.
- In a resource-constrained health system like ours, one touch point is medical education. In India, elements of palliative care were only introduced in undergraduate medical education curricula as recently as 2019. Palliative care needs to be taught in totality; teachers need to be trained along with students, as they are products of old curriculum.
- Palliative care is acknowledged in policy, but not substantially in practice. The National Program for Palliative Care and Palliative Care component of Health and Wellness Centers needs to be enlivened.
- The same holds true for providing essential pain relief. India’s Narcotic Drugs and Psychotropic Substances Act was amended five years ago, but many states have yet to implement the amended rules. Persons living with intense physical pain have to navigate multiple social and bureaucratic barriers to make life bearable.
Pulling together strengthens all
The theory is well laid out: initiatives to implement and practice coupled with awareness and demand from communities will strengthen our health system. My limited experience working on scale and sustainability of public health endeavors has taught me that individual efforts matter.
Any one doctor can be a beacon for others when they incorporate palliative care in their practice, whole communities can learn from a single family that has benefitted from palliative care, and whole governments can learn from best practices at the sub district level. When all components synergize, we will have a stronger health system.
Lastly, the greatest service tiny acts of compassion will do is to build trust and understanding between not just doctors and patients, but also between the health system and communities. When we work with rather than against each other, we will build a more resilient health system.
Harsh Vardhan Sahni wishes to acknowledge input from Dr. M.R. Rajagopal, Chair of Pallium India, and Smriti Rana, Director of Programs, Pallium India.
For more information on Pallium India, see our Global Directory of Palliative Care Institutions and Organizations.