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Palliative care: Optimising life, rather than end-of-life care

PT Jyothi Datta | Updated on December 06, 2019 Published on November 22, 2019

Palliative care is getting redefined, as Cipla’s initiative illustrates

Raghunath Khasnis has a faraway look in his eyes. A year ago, his mother had passed away. And earlier this year, he was diagnosed with cancer.

With no real place to call home, Khasnis now stays and undergoes treatment at Cipla’s palliative care centre (CPC) at Warje, Pune. People there know him as the man who keeps walking, something he does to not become immobile and dependent, says a social worker at the centre.

Sitting on a chair, his walking stick beside him, this 58-year-old, who once worked at a wholesale medicine outfit, talks of chess, reading books and writing poetry. The only other activity that brings a smile to his tired face is the prospect of meeting his close friend who visits him.

There is the “mechanical” aspect to palliative care involving medicines and pain management, and then there’s the compassion and emotional support required for those living with critical illnesses, says 33-year-old Pratima Mehta.

Pratima has lived the pain, having lost Ira, her three-year-old-child, to brain tumour. “But the pain the patient is going through is more traumatic than that of the caregiver,” says Pratima, who now runs marathons and blogs at mindofmine.co.in to share with parents how to be vigilant about the health of their children. She shares vignettes from her life with Ira, explains palliative care and lends a shoulder to anyone who may need it.

Palliative care is about “optimising life, rather than end-of-life care”, says the centre’s spokesperson. From the past, when it was difficult to get pain-management drugs like morphine, and when doctors were prone to putting critical patients though endless medication and procedures, the situation has changed, she says, calling for more training to sensitise doctors and nurses to palliative care.

Doctors should be trained to suggest it, says Pratima, as they did for her baby.

And that’s where 22-year-old CPC, the flagship of Cipla Foundation, looks to come in with training and funding support for palliative care. In September, the Foundation opened a paediatric palliative care unit at Mumbai’s BJ Wadia Hospital for children.

The plan is to take the service to other hospitals and broaden the understanding on palliative care.

Multi-pronged approach

Patients require a multi-pronged approach, says Rumana Hamied, Managing Trustee with the Foundation. At CPC, a team involving a doctor, nurse physiotherapist, nutritionist and medical social worker assesses and supports each resident patient, besides those taking home-care, free of cost.

“When you are embedded in the hospital, you talk to the patient and the caregiver,” she says. When doctors see their patients in comfort, they gain confidence to refer more patients to not just die in comfort, but to “also get better faster, with less side-effects and more energy,” she explains.

Empowering nurses is also key, because “by training the nurse in end-of-life-care, you improve the ecosystem,” says Rumana. Doctors are confident to take a decision because they can hand over to an appropriately trained nurse. The Foundation has worked with nurses at three AIIMS (All India Institute of Medical Sciences) centres and is also undertaking long-distance training for others.

The Foundation supports 12 organisations working in palliative care across the country in Delhi, Punjab, Guwahati, Indore and Thiruvananthapuram.

The landscape is slowly changing, she says. The Foundation runs a pilot programme in Pune where ASHA or health workers are trained to identify people who need palliative care and refer them to the CPC.

Discussions are on to expand it across the State.

Palliative care means “responsive care, to respond to your needs,” says Rumana. It needs to extend beyond cancer, to children with neurological problems or thalassemia, for instance, she says, reiterating “it’s not just end of life, it’s a paradigm shift.” Coordinated efforts are required not just for terminally ill patients but for anyone with chronic or life-limiting ailments, she explains.

CPC volunteer and in-patient, Dr Sureshchandar Dindayal Udasi, a 79-year-old veterinarian who now takes home care, provides valuable patient insight. Organisations like CPC should keep their paperwork and explanatory pamphlets on the treatment regimen simple and in the local language, he says.

Palliative care is about assisting patients to have a good life to the last minute, says Rumana — a reality for Suresh Kharat whose 16-year-old daughter Neha was at CPC. Dreaming of going abroad and becoming a doctor, she remained, instead, bed-bound and immersed in music and movies that played on her cellphone, gifted by another charity. She loved her mother’s home-cooked food and watched as her father participated in dances at the centre, just to make her smile. Days after our interaction, the girl passed on. A life cut short. But one that found medical and emotional support possibly to the very end, both for Neha and her father.

Published on November 22, 2019
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