‘The imprisonment and high-tech torture of dying people in ICUs is a growing Indian disease’

OPINION FROM TOI PRINT EDITION

January 12, 2021, 8:24 PM IST Narayani Ganesh

Narayani Ganesh

A former associate editor of The Times of India, leader writer and editor of The Speaking Tree, Narayani Ganesh writes on iss … MORE

Palliative care is a branch of medical care that aims to mitigate the symptoms of serious ailments. It is sometimes offered concurrently with other treatments. WHO estimates 40 million people need palliative care every year. MR Rajagopal, a physician by training and founder-director of a charitable trust Pallium India, explained its importance to Narayani Ganesh:

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What is palliative care? 

Palliative care is prevention and management of serious health-related suffering. It provides not only relief from pain and other symptoms, but also enables social, mental and spiritual well-being. It tries to understand every fibre of the suffering. The source of suffering could be any of the following: pain, breathlessness, an ulcer, anxiety, depression, issues of relationships, and abandonment by the family, hopelessness or even suicidal thoughts.

At the moment, palliative care is available only to a tiny minority of people in India. At least 98% people are deprived of even basic pain relief. In the context of the growing catastrophic health expenditure which pushes 5.5 crore of Indians into poverty every year, it becomes particularly important to bring in more humanity and compassion to care.

How would you describe ‘healthy ageing’? 

When you hear the expression ‘healthy ageing’, what thoughts cross your mind? Preventing lifestyle diseases like diabetes and hypertension, perhaps? You might also think about mobility and financial independence. They are all important. But let me share with you a lesson that a lot of ailing and dying people taught me: Love.

Investment in love and being connected become most important towards the end of one’s life. Remember, no one can be an island. We are social beings. A hand that says with a touch, “I care for you,” becomes all-important.

Is palliative care meant only for geriatric and end-of-life patients or can any gravely ill person, old or young, go for this option?

Palliative care is not only for any particular age group. It is not only for the dying and is not only for any particular disease. If there is suffering, palliative care has to step in, hand-in-hand with treatment of diseases. It is best done if every doctor and every nurse learns its principles and integrates it into their work. But, even then, for difficult issues, palliative care specialists will still be needed. And when the disease becomes incurable, palliative care continues to improve quality of life. Palliative care is also for the family and provides support even during bereavement process.

Most relatives try to prolong the life of a terminally ill patient at great financial cost in an ICU. Is palliative care a more affordable and humane option?

Death is the inevitable consequence of every life. The weeks or months preceding death can become a precious time, rebuilding connections, giving love and receiving love. The medical system needs to understand that it does not have a duty to prolong the dying process, when the disease is advanced and treatment is obviously futile.

Unfortunately, the imprisonment and high-tech torture of dying people in intensive care units is a growing Indian disease. This is clearly unethical. Relatives may want to “do everything” to keep the person alive; they need to be helped to come to a state of acceptance.

Where are we in palliative care and what promise does the future hold for us?

In 2014, the World Health Assembly had asked for integration of palliative care into all health care. In May 2020, it recommended inclusion of palliative care in Covid-19 strategy. Though neither of these has been achieved in India, there are several silver linings. The National Health Policy of 2017 does include palliative care. Several legal restrictions on the use of opioids for pain relief, have been overcome by a law enacted by Parliament in 2014. The MBBS curriculum includes most aspects of palliative care from 2019 onward.

All this lays the foundation for better care. But success will be limited if it is all left only for government action. Everyone in the community has a role to play, to offer a helping hand. Participation of the community is crucial to good palliative care. As the Astana Declaration said in 2018, healthcare ‘for all’ has to be healthcare ‘with all’.

What has been the impact of Covid-19 on palliative care?

Covid-19 has been an amplifier of suffering in every respect. As of now, approximately 1.5 lakh people have died of Covid-19 in India. They all die isolated from the family, most of them breathless and in physical, social and spiritual pain. At least 5 lakh people have been bereaved in the most brutal fashion – a loved one whisked away in an ambulance, never to be seen again with not even a proper farewell to the mortal remains – and they are at serious risk of mental illness.

Moreover, the suffering caused by lockdowns – particularly loss of income and lack of access to healthcare – has been horrendous.

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