Medical fraternity finds it tough to inform kin that patient is dying; palliative care not readily accepted Experts call for awareness in end-of-life care

Modern medicine has ensur ed that people live longer liv es, but often with more disease. And as the end nears, not many patients are asked what they want. The end is traumatic for most, especially those with terminal disease. Those who can afford it breathe their last in an ICU after aggressive treatment; the poor often die neglected and without treatment.

In such a scenario, it’s vital to create awareness about palliative and end-of-life care that makes dying easier. But it’s important to make relatives and loved ones a part of this conversation. Death is classified into sudden death, terminal illness, organ failure and due to frailty and dementia.

Doctors, palliative care experts and legal experts who gathered to discuss 'End of Life Care’ stated that the most difficult thing to do is bring near and dear ones to terms with the fact that medically “no cure is possible” and only “care” must be provided. The transition from cure to curative care is a tough call and doctors often wait till the last minute for that one response from a patient, which can signal a bounce-back.

M.R. Rajgopal, chairman of Pallium India, a palliative care unit, explained, “When patients are at this critical juncture doctors are also confused as they do not know how to talk about the end stage to the family. Their dilemma comes from the fact that the medical curriculum only teaches them to save lives, their primary duty. When they realise that medicines are no longer working, they don’t know how to tell relatives that the patient is dying. This is the most difficult part for the medical fraternity and we find a lot of doctors struggling.”

Lack of effective communication, compounded by inability to choose the right words, is one of the most difficult tasks.

For relatives, even the introduction of palliative care is not easily accepted.

In the case of cancer patients, it is only after the final round of radiation or chemotherapy that the family accepts that there must now be a transition hospital to hospice. However, the number of cancer patients making it to hospice centres is less than one per cent.

The idea that everyone lives by is that there is a cure and it will work. But what in cases when it doesn’t work?

Dr. Raj K. Mani, a senior doctor spearheading the concept of end-of-life care, explained, “With brain dead being accepted and organ donation finding a foothold in people’s minds, they also need to come to terms with the end stage of life. We need awareness and a change in public attitude.”

Presently, most hospice centres only have cancer patients. But there are a large number of dementia and Alzheimer’s patients who require care; their families are often not clear where to go and whom to approach.

Dr. Sridevi Seetharam, pathologist and palliative care provider, said: “For cancer patients the stay is a minimum of a month and maximum a year. But in dementia and frail patients, care can extend for years together. We need proper systems in place to take care of them.”

The need is to identify, accept and then work on a solution where these patients are given the empathy and care they need and not left outside hospitals or locked inside homes.