MR AND MRS AT, both in their eighties, moved from Pune to Mumbai to live near their only son. Two years later, Mrs AT needed hospitalisation thrice in two months, first for medical problems and then for a hip fracture surgery. During this period, they made it clear that they did not want excessive medical treatment towards the end of their lives. Mrs AT made a partial recovery and could hobble around with a walker. But three months later, her husband suddenly developed pneumonia and needed admission. Within a day, in spite of treatment, his BP crashed, kidneys stopped functioning and breathing deteriorated—medically termed multi-organ dysfunction syndrome. He was 89 and the doctors were certain that pulling him out would be a difficult task. If he did recover to the point of leaving hospital, it would be with a breathing tube (tracheostomy), a feeding tube and a catheter. The decision was made to withhold life sustaining treatment and the focus shifted to making him comfortable. He passed away a day later with his son holding his hand. One year later, Mrs AT again needed hospitalisation twice. Her uncontrollable diabetes had resulted in large skin boils needing daily dressing and a stubborn urinary infection. After the second admission, she made it clear that she did not want to go to hospital again. So the focus changed to keeping her as comfortable and pain- free as possible at home. A palliative care team helped manage her symptoms and she passed away three months later with her children and grandchildren around her. She was alert and cheerful till the last day.
For most elderly Indians, this is a fairy tale. In reality, people in the same situation die alone in hospitals, often on ventilators. We see patients with terminal cancer rushed into ICUs instead of being offered a peaceful natural death. In a private hospital, the costs are substantial: the hospital bills for a friend’s 85-year- old father amounted to Rs 25 lakh for the last year of life. Corporate hospitals fail to recognise that this is a major and avoidable cause for disputes. If this happens in a public hospital, the story is likely to be shorter, as limited resources lead to a brutal triage. The family is told to take the patient home and the discharge papers say: ‘Left against medical advice’. In any case, these are miserable deaths since palliative care is never involved. India has been rated as one of the worst countries in the world to die in, documented twice in The Economist’s Quality of Death index. This is not a matter of financial resources, since poorer countries manage better. The state of Kerala provides better palliative and end of life care in its rural areas than is available in any of the metros. Three missing elements explain this tragedy.
One: the lack of public awareness. Death is ‘apshagun’ (inauspicious), and yet there is a hunger for such conversations whenever they are opened. Malayala Manorama did a stellar job of naturalising death in its home state, Kerala. Can national media houses follow this lead? Our website Onelittlewish.org is a beginning, albeit currently only in English.
Two: lack of professional capacity. Indian doctors are not trained to handle such issues. No medical student gets even a couple of hours of basic orientation on handling death and dying. Palliative care is a rapidly growing post-graduate medical specialty worldwide: in India, we train only eight specialists a year. And this is not an expensive high-tech business; limiting unnecessary care often reduces costs.
Three: lack of legislation. This is probably the original sin. It is only now, almost 70 years after India’s Constitution was written, that the Supreme Court has recognised our constitutional right to personal autonomy in health matters.
The situation is very different elsewhere. Doctors broach these subjects once terminal illness is identified or in late old age after the first hospitalisation. Trained counsellors then take over and the road ahead is spelt out, unless one chooses not to be informed. A peaceful passing requires emotional closure with family and loved ones and this cannot happen without accepting the proximity of death. Palliative care professionals help to manage symptoms such as pain, depression, etcetera. The goal is to live as well and as long as possible with terminal illness. Natural death then occurs at home or in surroundings of one’s choice with minimal or no discomfort. We too need to make death ‘apshagun’ no longer.