How India is failing those at the end of life
10 min read . Updated: 02 Jan 2020, 08:54 PM IST
Premium- India has an extremely weak palliative care ecosystem for the terminally ill and the elderly. With an anticipated rise in both those groups, this could be the next big public health challenge
- Do terminal patients and the rapidly expanding cohort of elderly have a choice beyond dying in clinical ICUs?
New Delhi: Spaces built to nurse the dying can sometimes surprisingly spring them back to life. Like it did for 37-year-old Siddhartha, a terminal brain cancer patient who has no memory of the day when he was brought to a hospice in the winter of 2017. His body was unable to withstand repeated surgeries and chemotherapy. Siddhartha was slipping into a coma. The oncologist’s prognosis was poor: he was not expected to live beyond a month.
Two years later, sporting a bright smile on a clean-shaven face, Siddhartha belies the graveness of the disease he still carries inside. He also has many new life goals. An audacious plan to take the train from Delhi to his ancestral village in Bihar to attend a niece’s wedding. Or the more banal one of taking the wheelchair out to enjoy the morning sun every day.
Shanti Avedna Sadan, Delhi’s only hospice for terminal cancer patients, has been Siddhartha’s home for the past two years. The facility resembles a spacious dormitory housing male and female patients in separate floors. The place is shorn of any medical equipment—just food trolleys and beds which can be rolled out to the adjacent garden.
According to Shanti Avedna Sadan’s administratorSister Tabitha, trained caregivers at the Sadan (which literally means ‘home’) look after patients, but don’t particularly treat the disease. Among the earliest palliative care facilities set up in India, which is now in its 25th year, one would expect the hospice to be overcrowded in a metropolis teeming with cancer patients. But two-thirds of the beds at the Shanti Avedna Sadan are vacant this winter.
That is partly a result of intense social stigma, with hospice being seen as the last resort for the abandoned (the services are free), and also due to patients’ and their families’ refusal to give up hope, said K. V. Hamza, founder of end-of-life care non-profit DNipCare, and the man who brought Siddhartha to the hospice. The doctors too share a part of the blame. For them, relegating a patient to palliative care is an admission of failure, if not a lost business opportunity.
When the only tool at your disposal is a hammer, everything appears to be a nail, said Suresh Kumar, director at the Institute of Palliative Medicine at Calicut, Kerala. Kumar laments that aggressive treatment procedures driven by commercial interests often interfere with the quality of life for terminal patients. They are seldom in a position to choose between adding a few months to their lives swinging from delirium to pain, and spending their last days close to family.
“Aggressive treatments also severely impact the ability to take a decision. Your mind stops working. You end up being at the mercy of the doctor," said an advanced cancer patient from Delhi.
With a decisive shift in India’s disease burden towards non-communicable illnesses like cancer, and a rising tide of the elderly in a number of Indian states, difficult questions about a dignified end to one’s life are going to become a huge public policy concern.
Over 800,000 cancer deaths were recorded in India in 2018, shows data from the National Cancer Registry Programme, up from about 670,000 in 2014. The share of elderly (60 year and above) in India’s population was 8.6% or about 104 million as per the 2011 Census, but it is estimated that, by 2050, India will be home to 300 million old people. Southern states with lower fertility and higher life expectancy are already beginning to deal with ageing.
But despite that, just 2% of India’s population has access to palliative care, said Reena Sharma, head of field services at CanSupport, a Delhi-based non-profit which offers free home care. The emerging specialty is also heavily concentrated in state capitals and is mostly limited to cancer facilities. In rural areas, where two out of three Indians live, palliative care is unheard of. The only exception is Kerala, where an extensive community-based neighbourhood network offers support. The state accounts for 1,400 of the estimated 1,600 service delivery points in India.
Islands of support
What we have now are islands of excellence in large medical colleges and tertiary cancer centres, and a palpable void a few hours away from these facilities, said Manjiri Dighe, medical director at the Cipla Palliative Care and Training Centre, Pune.
One reason for the low penetration of palliative services is because the Medical Council of India recognized palliative care as a separate specialty as late as 2010—though the first in-patient charitable facility was set up way back in Mumbai in 1986. It was only in 2012 that India’s first doctor of medicine (MD) course in the field was approved at the Tata Memorial Hospital, Mumbai. Two years later, All India Institute of Medical Sciences (AIIMS), Delhi, offered a similar course. The same year, in 2014, Parliament amended the Narcotics Drugs and Psychotropic Substances Act, 1985, opening up the use of morphine, the cheapest and best known pain-reliever known to medical science.
The space for palliative care is not restricted to old age and cancer. Terminal illnesses can strike at any age, including in children born with congenital anomalies, where conventional treatments are of no use except imposing a financial cost on families, said Amitava Chowdhury, a public health practitioner from Kolkata, West Bengal.
Chowdhury recounted the case of a family member who vehemently refused to get treated for his colon cancer since he was past eighty. All he wanted was a peaceful death at home. But his well-off children thought otherwise. He was admitted to a hospital and died there.
The other problem, says Chowdhury, is that painkillers like morphine are still hard to get. A patient has to establish a terminal case of cancer at a government or a licensed facility, which means travelling long distances to a state capital to get a few days’ supply. For the millions living in rural India, dying in pain is fairly common.
“Some countries have approved the medical use of cannabis, a wonderful painkiller. But in cities like Kolkata, even painkillers like Alprazolam (which induces sleep and relieves physical pain and anxiety) are not available with most chemists," Chowdhury adds.
Home care
By 9.30 every morning, Smita Handa has a fair idea of the tasks ahead of her. A former physician with the paramilitary forces, where chronic and terminal illness was rare, Handa is now a palliative care specialist with the Delhi-based CanSupport.
The job is not easy. Encountering death at close quarters is both sobering and demanding. And Handa’s task does not end with the death of a patient. The bereaved family has to be eased back to their routine lives.
The mother of 32-year-old Iqbal, who died of lymphoma, broke down in Handa’s arms as she walked in with her colleagues. The same day, Handa also met a gutsy breast cancer survivor, 39-year-old Pooja. Some years back, she was the one who pacified her worried husband and took charge of her own treatment. She had a frank chat with the oncologist who recommended surgery while her shocked husband listened in silence. The team reminded Pooja not to miss her regular check-ups—a PET scan to ensure that the cancer is not back. A brief conversation with her was filled with laughter and hope.
But none of these visits were adequate preparation for the last patient of the day. A seven-year-old suffering from an acute cancer of the lymph nodes, whose parents contacted the support team just a day before. Inside a tiny apartment in a congested neighbourhood in east Delhi, Agastya lay still on the bed, groaning faintly with his eyes shut—sedated by a heavy dose of morphine. In February last year, after a vigorous relapse of the cancer which spread from his neck to the thighs, doctors at AIIMS, Delhi, told the parents to take him home. There was nothing more they could do. This was a shock to the family. Agastya had recovered in 2015 and even attended a year of school.
The parents were late to inform the palliative care team. Due to an acute septicemia (infection), his entire body was bloated. The parents, with another younger child to look after, asked Handa if she would take Agastya. The sight was too much for them to bear; the putrefying smell of infection, a constant reminder of impending death. They were too tired to take care. But Agastya could hear his parents despite the morphine induced stupor. He did not want to leave his home.
Handa quickly rushed through the papers and checked the severity of the infection. A counsellor spoke to the boy, gently stroking his hair. Handa prescribed antibiotics and advised the parents to immediately transfer the boy to Shanti Avedna Sadan.
“We should have been informed earlier. Such a case can’t be handled at home," she said after leaving the house. Also, if the parents had called earlier, it would not have led to a severe infection. Agastya’s last days could have been a little better, and his suffering less traumatic. Agastya died later that night.
Reasons to live
At times, societal perceptions also determine end-of-life treatment choices. Reena Sharma from CanSupport recalls an incident when a terminal patient’s daughter had an unusual request for the home support team. Can they tell her a day before he dies? She had to take her father to a hospital. Dying at home would mean she did not care enough. She did not want anyone to blame her.
The irony is palpable. Low-income families, when they have access to free palliative support from government hospitals or non-profits, seem to have a better quality of life in their last days. The well-off, however, who pursue aggressive treatments which prolong their lives marginally end up dying in intensive care units, alone and away from families.
“The economic status of the rich often deprives them from accessing compassionate home-based care. In medicine, death is seen as a failure and most oncologists view palliative care as a soft skill," said Sneha Rooh, a palliative care physician from Bengaluru.
Accepting death must lie at the heart of the way we treat the dying, wrote Atul Gawande, a US-based surgeon and public health researcher, in his book Being Mortal. “We think our job (in medicine) is to ensure health and survival. But really… it is to enable well-being. And well-being is about the reasons one wishes to be alive."
Sometimes, we (doctors) can offer a cure, sometimes only a salve, sometimes not even that, Gawande wrote. “When we forget that, the suffering we inflict can be barbaric. When we remember it, the good we can do can be breathtaking."
A case document shared by the palliative care team at the BJ Wadia Hospital in Mumbai, run in partnership with the Cipla Foundation shows what that “salve" means to a family. When an 11-month-child with a short life span, suffering from a congenital heart anomaly, was referred to the team, they found out that the mother had never held the child since his birth. They taught her how to hold the baby, navigating the ventilator tubes and wires. The parents were encouraged to speak to their only child.
Death cafe
The palliative out-patient department at AIIMS, Delhi, sees a steady stream of patients; over eighty, on an average day. Many first-time patients do not have a clear idea about their disease; so, a lot of counseling is required alongside regular pain management, said Sushma Bhatnagar, professor and head at the department of onco-anesthesia and palliative care. Then, there are requests Bhatnagar has to navigate. “Please don’t tell my brother he has so little time left," said a family member during a visit.
Families often shy away from discussing death and many do not inform patients about their prognosis. So, Sneha Rooh, the doctor quoted earlier, initiated a unique conversation circle to deal with the taboo. She has hosted around thirty ‘Death Café’ sessions in a little over two years—following an international social franchise model, which aims to increase awareness regarding death “to help people make most of their finite lives."
“The question which prompted me was: I wanted to know what is a good death. I wanted to understand that from terminal patients themselves. But there was a lot of resistance from the institute where I worked." It was then that Rooh realized how difficult it is, even for palliative care physicians, to have a frank conversation about death. Till that changes, dignity in the last days of one’s life would remain elusive.
All patient names have been changed to protect their identities.
