The concept of a ‘good death’ is prevalent in many cultures. Many of us have heard elders in the family pray for an easy death, anayasena maranam. In the song ‘The Gambler’, Kenny Rogers sings, “The best that you can hope for is to die in sleep.” The Japanese have the ideal of ‘pin pin korori’, or an active life and a sudden death. While a peaceful end is what most people desire, suffering—sometimes paradoxically aggravated by medical treatment—is the hard reality.
Considerable advancements in medical science and nutrition have prolonged the average life span in India from 32 years in 1947 to 70.42 in 2023. However, the challenges posed by disease and medical interventions have made end-of-life situations difficult and complex. The draft bill on euthanasia circulated by the health ministry has brought into focus the right to die with dignity. While the ethical and societal implications of assisted dying are being debated, it would be worthwhile to look at what palliative care can offer.
Palliative care initially grew as a branch of the hospice movement. It encompasses a range of services to patients, seeking to alleviate their physical and mental suffering. The word palliative is derived from the Latin palliare, which means to cloak. It is a multi-disciplinary approach to provide care to those suffering from terminal illness. It aims to improve the quality of life by providing relief from pain, and give emotional and spiritual support. The World Hospice and Palliative Care Day is observed on October 12.
In India, access to opioids for pain management was taken up by the palliative care community. This resulted in an amendment to the Narcotic Drugs and Psychotropic Substances Act in 2014, creating the category of ‘essential narcotic drugs’. Palliative care was also included in the National Health Policy of 2017. It has grown through efforts in capacity building, community outreach and educational collaboration with global organisations. Most elements of palliative care are part of undergraduate medical curriculums and has evolved as a clinical speciality in India.
It is estimated that about 7.2 million Indians would require palliative care every year. However, the access to palliative care services is uneven, more so in rural areas and for patients in lower socio-economic stratums. In this, Kerala has taken a lead in creating palliative care centres and their model is worth replicating.
The impact of the assisted dying legislation on palliative care could be a concern. There is apprehension that it could detract from the growing need for expanding palliative care services. However, such a law may have the opposite effect if recourse to it is made available before a decision on assisted dying is made. In the US and Netherlands, where assisted dying is legal, there has been an improvement in palliative care services.
Many terminally ill patients are subjected to aggressive medical treatment in hospitals even when the prognosis is poor. This is where the principles of palliative medicine—for care, comfort and quality of life—gain relevance. Studies have shown that patients receiving palliative care along with conventional treatment experience reduced distress and report lesser pain and depression. Integrating palliative care into mainstream healthcare systems is essential.
Insurance policies should reimburse costs of palliative care, as it is an integral part of treatment. The Ayushman Bharat scheme includes a few health insurance packages for palliative care. But its scope needs to be expanded to bring in a greater coverage for patients and a wider range of ailments.
The decision of patients for end-of-life care choices need to be documented and made known in advance to medical professionals by the patients or their families. This will ensure respect for the decisions. Living wills and advance directives are popular in several countries.
It is important that doctors engage with patients and give them a realistic assessment of what the future holds, considering the stage of a disease. The patient may choose not to be put on life support. It has been often emphasised that doctors need to be skilled communicators and inform patients on the available options. This can facilitate appropriate decisions by patients and their care givers.
Being a specialised area, palliative care for children has seen active involvement of paediatricians, professionals and social workers in recent years. Siblings and care givers of afflicted children are also included in programmes by palliative care organisations, as a child’s illness impacts the entire family. Art therapy and storytelling have been found to be effective tools in helping children cope. Early referrals by doctors enable professionals to hand-hold children through the illness. Group activities help in giving them an experiential sense of normalcy. Bereavement counselling for families is also being undertaken as an extension of palliative care.
The mission of palliative care is to provide practical solutions in the face of despair. It aims to add life to years, empower caregivers and help patients deal with trying circumstances. While death is a natural progression of living, an attempt to smoothen the transition is an innate expression of compassion.
Geetha Ravichandran
Former bureaucrat and author, most recently of The Spell of the Rain Tree