Palliative care in the country is in dire need of attention

But what do we understand as palliative care? Who is part of this community we are being called on to support and advocate for? Why the need for such a compassionate approach to care?

These are the fundamental questions that define the search for an inclusive, interdisciplinary healthcare system that could help mitigate the suffering of patients with serious illnesses. Palliative care can be the answer to that quest.

Palliative care is specialized medical care for people living with a serious illness. It is based on the needs of the patient, rather than the patient’s prognosis. This type of care is focused on providing relief from the symptoms and stress of that illness. The overall goal is to improve the quality of life for both the patients and their families. Palliative care is provided by a specially trained team of doctors, nurses and paramedical staff who work together with a patient’s primary medical team to provide an extra layer of support. It is appropriate at any age and at any stage of a serious illness, and it can be provided along with curative treatment.

Here’s how palliative care made a difference in Gita’s life, who was diagnosed with breast cancer at the age of 21,and her family spent everything they had on her treatment. She was in severe, constant pain and Gita’s energy to care for her 2-year-old daughter was completely depleted. She had neither received physiotherapy nor correct nutritional advice. Her oncologist was determined to change that. He referred her to a palliative care centre. The palliative team worked together with the oncologist and the treating physician over the next few months to bring Gita back to the strong, beautiful young woman she was. Alongside the curative treatment, a team led by her palliative doctor, nurse, social worker, physiotherapist and nutritionist worked to mitigate the suffering of both the disease and the treatment itself, where her immense pain and fatigue were addressed. She received counselling to deal with her fears as well as those of her family. The physiotherapist taught her exercises she could easily do at home. She joined a peer group to share and learn from other breast cancer survivors.

Gita is now in remission; she remains close to her doctors and her counsellors. She got what everyone deserves, a real chance.

Sadly, this is not a reality for most. Worldwide, over 56.8 million people are estimated to require palliative care every year. The burden of severe illness and health-related suffering and the corresponding need for palliative care is overwhelming. The illnesses and conditions that generate the most serious suffering requiring palliative care interventions are cancer, HIV/AIDS, degenerative neurological disorders, vascular dementia and lung diseases. Yet, palliative care is not accessible to most people in need, especially in low- and middle-income countries. In India, the Lancet Commission estimates that only 4% of those who need palliative care receive it—highlighting a huge unmet need.

The challenges facing palliative care in India are indeed multifaceted. A significant hurdle lies in the minimal awareness and understanding of palliative care among both the general public and healthcare professionals. Many individuals view palliative care as synonymous with end-of-life care, often overlooking its broader application in alleviating suffering throughout the course of illness. Further, the absence of comprehensive palliative care training in the medical curriculum results in a shortage of healthcare providers with the necessary expertise. Resource constraints, both in terms of funding and infrastructure, hinder the establishment and expansion of palliative care services, leaving a vast majority of those in need without access to the relief and support they require.

How can we bridge this abyss in access to palliative care? This is where compassion comes into play. Compassion is defined as strong empathy for people in need, to recognize their suffering, followed by a strong desire to take action to help them. It is estimated that 55 million Indians annually, when faced with a health emergency, sink into poverty. There are millions of people for whom we must take urgent action. This calls for a concerted effort to educate, raise awareness, and allocate resources to bridge the immense gap in palliative care provision in our country.

Each one of us can support and connect people to palliative care. We can unite under a shared objective to improve the quality of serious illness care. There is a continued need to come together to support vulnerable communities, now more than ever.

We need to empower our doctors and patients. We must collaborate with policymakers and healthcare providers. We should advocate and implement the national policy on palliative care as well as ensure easy accessibility to pain relief medication. We know that we need to strengthen our healthcare system, and these are the avenues through which we can do so.

I believe compassion is at the heart of an equitable healthcare system. And now with an understanding of the power of palliative care, we must advocate for nothing less.

The author is managing trustee of Cipla Foundation.