“The physician’s duty is not to stave off death or to return patients to their old life, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”
Paul Kalanithi, When Breath Becomes Air
According to the 2015 Quality of Death Index, India ranks 67th of 80 countries surveyed. In other words, it’s among one of the worst places to die in. Some of the reasons for this low position are overburdened public hospitals, unaffordable private healthcare and the virtual absence of palliative care. Adding to that, restrictive government policies make opioid painkillers like morphine inaccessible to most.
But, unlike the West where most people die in hospitals and hospices, in India most people still die at home. A recent survey found that 83% of Indians would actually prefer that to dying among strangers or machines in an intensive care unit. This is possible since most Indians have, and often live with, large families who can share the burden of caregiving. But serious illness coupled with poverty can put a family in an extremely precarious position, especially if the terminally ill patient happens to be the main breadwinner, or if the primary wage earner has to give up his / her job in order to look after a sick family member. This is the time when the family desperately needs some external support.
In Delhi, this support comes in the form of a NGO, one of the few, that provides palliative care services. Palliative care aims to improve the quality of life of people living with and dying from serious, life limiting conditions. It addresses physical, social, psychological and spiritual issues faced by those affected and their families. CanSupport is running India’s largest free home-based palliative care programme for terminally ill cancer patients. In their experience, care administered at home considerably enhances the quality of life for the patient. In a year they are able to reach about 4000 persons. The number of people who need palliative care in India is estimated to be 6 million.
By the time CanSupport’s helpline rings, they know that the patient probably has less than 6 months to live. A team, consisting of a doctor, a nurse and a counselor, arrives at the patient’s home to assess the medical and socio-psychological condition. They will see the patient every week until he or she dies. In most cases, the patient and the family have already been reeling under months of tremendous pressure. Over the course of visits, the team tries to ease their suffering – physical, emotional and spiritual.
CanSupport is one of the few institutions in India who are allowed to stock and give morphine. Less than 2% of cancer patients in India who need opioid painkillers get it. Relieving their patients of pain is the team’s first task. It is only when the patient is free of pain and other distressing symptoms, can they begin to address emotional and mental anxieties. Through intense counseling and emotional support they help them find ways of coping with psycho-social and spiritual pains. They also provide bereavement counseling to family members to work through feelings of loss or grief. At all times, the team helps patients and family members to make informed decisions in the context of what they would like or want.
- Only 20 countries have palliative care well-integrated into the healthcare system.
- In 42% of the world’s countries there is zero availability of palliative care.
- 40 million people worldwide need palliative care annually including 20 million at the end of life.
- 78% of those needing palliative care live in low and middle income countries.