One of my favourite aunts passed away very recently. She had lived a long and gratifying life. In her early eighties, she was diagnosed with dementia. Fortunately, her children, grandchildren and long-term maid took loving care of her in her last decade. By the time she passed away in her home, she could recognise only the few people who were closest to her. The last years of her life were not only filled with attention and love but also with the deep and frustrating challenges of not being able to care for herself.
My aunt was lucky. Most people in their twilight years would consider themselves blessed to not have to worry about the financial costs of end-of-life care, to have a family that could access health information on the Internet or from medical journals to manage their condition, and access to treatment by the best doctors. They would be fortunate to not be on expensive medical equipment and drugs that lower their quality of life, and to die without significant pain.
Dying well is desirable regardless of what one is dying of. Take for example cancer, which accounts for 6 per cent of deaths in India. In a recent study, my colleague, Dr. Sanghamitra Pati from the Public Health Foundation of India, reported that half of the 68 cancer patients she interviewed at a palliative care hospital in Odisha had never heard of the disease before they were diagnosed with it. By the time they pass on, their families are financially ruined.
Nearly 6.3 crore Indians, 7 per cent of our population, fall below the poverty line due to health spending . In fact, things are only getting worse. According to Government of India estimates, 18 per cent of households faced catastrophic health costs in 2011-12, up from 15 per cent in 2004-5. Most of those who go into poverty do so not because they were admitted to a hospital but because of the high cost of drugs prescribed by their doctors.
When Dr. Pati talked to patients, she found that financial constraints were a major reason for the average two-year delay in accessing treatment after patients had first reported symptoms. A second reason was they did simply did not know about cancer or that treatment was possible in some instances. For those who made it to palliative care, which would help them live out their last months without the searing, intense pain of cancer, the most important factor was that they had the support of family and friends.
The Indian Association of Palliative Care calls for “improving the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of end-of-life care issues through education initiatives.” To this, I would add that palliative care should be affordable so that dying in dignity in not a luxury available only to a few.
My aunt’s passing away, while painful to her family and friends, represented what the Hindu scriptures call Anâyâsena Maranam or the “good” death. As [Boston-based surgeon and writer] Atul Gawande writes in his book Being Mortal , “we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.” As we aim to provide the “good” life to all our citizens, shouldn’t we do more to ensure the “good” death?
Prof. Ramanan Laxminarayan is Distinguished Professor at the Public Health Foundation of India.
