Compassionate communities: Together for palliative care

This article is authored by Rumana Hamied, managing trustee, Cipla Foundation.

“I’ve just been diagnosed with early stage of Parkinson’s, why do I need palliative care?” - Sahil, 65 years referred by a neurologist to the palliative care team.

Healthcare (Representational Photo)

World Hospice and Palliative Care Day (WHPCD), marked on the second Saturday of October is an annual unified day of action to celebrate and support hospice and palliative care around the world. This year the theme of WHPCD is ‘Compassionate Communities: Together for Palliative Care’ to focus on how each one of us can make palliative care more accessible to anyone with a serious illness.

WHPCD mentions palliative and hospice as separate as there is an important distinction between the two terms. Both palliative and hospice care focus on relieving the pain and other symptoms including the emotional, social, and financial stresses as well spiritual concerns experienced by patients with any serious illness that could include for example neurological conditions- Alzheimer’s, Parkinson’s, Dementia, Pulmonary diseases, chronic heart or kidney disease or cancer.

The key difference is, however, when this care begins. Palliative care can begin as early as diagnosis and continue during curative treatment, so that whilst the treating physician focusses on the disease management, the palliative care team can address the impact of the disease on the patient and the care giver as well. Hospice care, on the other hand, is that part of palliative care that begins only once curative treatment stops, and the goals of care are focused on maximising the comfort of the patient and supporting the patients and their families at the end of their treatment journeys and also includes offering bereavement support to the families.

Palliative care when started early in any serious illness can make a big difference to the patients and their family. As in the case of Sahil, who had just been diagnosed with Parkinson’s, and took up the offer to meet with a palliative care team. The team explained to him how they would support him and his family, especially his symptoms beyond movement, whilst he continued to consult with his neurologist. Over the next few months, the counsellor addressed the fears he had as well as those of his family in terms of how their lives may change as the disease progresses. The palliative care physician and nurse explained how his pain, fatigue and disturbed sleep pattern could be addressed and the physiotherapist demonstrated exercises that could be done at home. The palliative care team formed a circle of compassion around Sahil to let him and his family know they were not alone.

In India, the Lancet Commission estimates that only 4% of those who need palliative care actually receive this care – highlighting a huge unmet need in communities. The WHPCD this year reminds us that we all need to play a role to demonstrate our compassion. This involves showing that we care by identifying those who have a serious illness in our communities, connecting them to services and offering to volunteer to raise awareness about palliative care. Together, we can strive to close the care gap, so that more people are confident that palliative care can make a difference to their lives and their experience of dealing with a serious illness.

This article is authored by Rumana Hamied, managing trustee, Cipla Foundation.