When 50-year-old Thangam* of Theni in Tamil Nadu followed her doctor’s advice on having a check-up in Madurai, she underwent one readily. She did so because the pain she was experiencing was unbearable. In Madurai, doctors suspected that it was cancer. Her family lost no time in bringing her to Chennai and visiting the Cancer Institute.
R. Sujatha Here, she underwent investigations that returned positive for advanced stage sarcoma. The shattered family rallied around Thangam.
“The doctor said she would need at least a dozen chemo sessions but success is not guaranteed,” recalls her relative Ilayaperumal*.
Her son resigned from his new job in the United States to be with his mother. “We told her a little of what she was going through. She was in the hospital for a month submitting to medications. But she refused chemo and one day decided to return to Theni. We could not counsel her. A simple village woman, she believed the stories of one losing one’s hair and beauty. Talking about her condition, of pain and struggle, was taboo for her,” Ilayaperumal adds.
The medication she was put on in the hospital helped her for a month but things became worse soon. She was admitted to a private hospital in Madurai hoping for a miracle or at least be relieved of pain. “But doctors gave up on her within a couple of days. The last 15 days were extremely painful for her,” he says with regret.
Four months on, Thangam’s shattered family members are rebuilding their lives. “Theni has a government hospital but no facilities to treat cancer. We did what we could for her but the family is now coping with emotional and financial stress,” Ilyaperumal rues.
Thangam’s family lacked the support structure of palliative care that could have helped not only her but also her loved ones.
She is among the thousands of patients who go through the same experience, says Anantapur-based radiation oncologist G. Durga Prasad. He is a trainer in palliative care at the MNJ Institute of Oncology, a regional centre of excellence in Hyderabad. He founded a pain clinic and a hospice in the city before moving to Anantapur Medical College.
Different support requirements “Only 20 per cent of patients require end-of-line care. For the rest of them, the support requirements differ, from emotional to psychological or even rehabilitation. You need a support structure not only for the patient but also for the family after the death of the patient,” he says. “Cancer has brought recognition to palliative care but those with chronic ailments need it too. In palliative care, the role of a doctor or [a] physician is minimal, initially, as patients are battling psychological, emotional and financial disturbances. You need a dedicated team of nurses and social workers who will help them overcome their shock at discovering that they are ill,” he explains.
R. Sundararajan, who runs Stoma Care, a centre that trains people who have undergone ostomy to take care of themselves, sums up the grim situation of people on palliative care. “They are literally awaiting their end and not even in a position to converse. Their families battle every day with stigma, the despondency of having to see their loved one[s] go through agony. A small act such as dressing their wounds brings tears of gratitude on their face,” he says.
But the positive side is targetted focus on training which has finally paid off. Now, with the concept of hospice[s] taking root in at least the metro cities, in rural areas, the government authorities must pitch in, said Chennai-based Mallika Tiruvadanan, life member of the Indian Association of Palliative Care, and founder of the Lakshmi Pain and Palliative Care Trust.
“We have come a long way from denying the use of morphine for pain relief to being able to stock morphine tablets and provide them to patients. Currently, less than two per cent of needy patients receive palliative care,” she says. “What we need is trained palliative care providers in at least district and taluk level hospitals. If doctors are not aware of palliative care, then blame it on the curriculum,” Dr. Mallika says. Though pharmacology is a subject in the MBBS curriculum, palliative care gets only a passing mention. For several years now she has been training doctors who volunteer for her programme.
“The speciality developed in the 1960s in western countries and now the World Health Organization (WHO) has begun addressing the subject as non-communicable diseases are on the rise. We have always maintained that palliative care begins at the time of diagnosis. A patient who has had a serious injury after a fall and takes [time] to recover also requires help, to treat pain and the emotional upheaval caused by the injury. We have been reiterating that palliative care is not about caring for [the] terminally ill but well-being of the patient and the family,” says Nagesh Simha, president of the Indian Association of Palliative Care.
Need for change Physicians like him would like to see more changes, he says. The Narcotics Drugs and Psychotropic Substances Act, 1985 or NDPS Act has been amended several times and the best thing that has happened in the country is the compulsory, single-window clearance for procurement of drugs, according to Dr. Nigam. A group of six medicines used for pain relief specifically can be purchased only through the single window clearance. In each State, the State drug controller has discretionary powers. This kind of control has helped in ensuring that the drugs are not only available but are also not misused.
It has been an arduous journey for palliative care specialists. For decades, morphine was difficult to access even to treat cases of genuine pain. Now, registered medical institutions are being given licences to stock a specific amount of morphine tablets. Annual stocks are replenished on written request from the institution.
“Though in 2014, the Government of India amended the NDPS Act, not all State governments have implemented it. We had, in Tamil Nadu, conducted several meetings with the Drug Controller, after which the government modified the rules in 2007. Now, the struggle is to ensure that we can get injectible morphine too,” she says.
WHO’s boost Palliative care, as a speciality, received support from WHO when, at the 67th World Health Assembly in May 2014, it was resolved to integrate palliative care into national health services. At the assembly, it was decided that doctors and nurses could be trained in palliative care until the subject was incorporated in the curriculum for undergraduate and postgraduate medical and nursing courses.
Ilayaperumal, who watched his relative die a painful death, says when the doctors in Madurai realised that Thangam had not undergone even one chemo session, the intensity of care fell drastically.
“The nurses were around and basic care was given but we could see she was suffering and we were helpless. A hospital staff told me that doctors knew hers was a hopeless case. If only she had received professional counselling to go through with the chemo, it would have been different. We are rallying around the family but it is far from adequate. We see them struggling with the loss but we don’t know how we can help,” he says, angst lacing his voice.
*(Names changed on request)
sujatha.r@thehindu.co.in
