Dying With Dignity

At a time when a majority of terminally ill patients prefer to ‘stay alive’ tethered to high-tech machines, 75-year-old Cheriyan John’s priorities are clear: He has lived his life with gusto and wants to play out the end game too with the same zest. “Quality of life is more important than the quantity of time. I want to be happy while I am alive. I don’t want to take medicines that my body can’t handle and remain in a vegetative state simply to prolong life by a few months,” says John. Detected with terminal lung cancer, he had an honest conversation with his doctor and family, but this is not possible for all. Often, terminally ill patients stuck on life support systems are subjected to severe pain and suffering even as they face futile treatment. They suffer from not just physical pain, but also the agony associated with loss of autonomy, dignity, loss of quality of life, and an inability to engage in what makes people’s lives meaningful.

As the debate on dying with dignity grows after the Supreme Court judgment of 2023, which simplified the rules on passive euthanasia in cases of terminal illness, doctors in Kerala have for the first time begun to discuss the importance of an individual’s right to refuse treatment. More importantly, a few patients here have also started opting for it.

Published in the British Medical Journal (BMJ), the study said, “It is important to understand that by refusing treatment, a patient is not attempting suicide, but is merely following the natural course of nature that would have existed had such advances not occurred. …. while drugs and devices prolong life, they can significantly reduce the quality of life.”

“My mom (76) had severe terminal lung disease and advanced heart disease. She was hospitalized four times in the ICU within a period of a month and every time she would return home fully dehydrated and unable to breathe. Soon, she started refusing advanced life support as she felt much worse. She knew she was not going to get any better. She didn’t want to die with ventilator support, and her only request was to die at home. We wanted to respect my mother’s wishes but what happened was contrary to her wishes. Everything that she or we didn’t want, the doctors did,” says Dr Sudha Royappa, a medical professional in the US. What really hurt her was that despite being a doctor, she was not able to help her mother. Added to it was the emotional pressure piled on her by the hospital and the doctors. “They told me to move to another room if it’s so bad to see my mother suffer. They asked me why I don’t want to ensure advanced treatment for my mother despite being a doctor in the US and having the wherewithal to afford it. ‘You don’t love your mother?’ they asked me,” says Dr Royappa.

“I don’t want any of my other family members to die like this. Everyone needs to start respecting the patient’s wishes. It is not about what the doctor or the family wants, it is about what a patient wants. My mother was an independent woman and towards the end of her life, she felt so ashamed and humiliated. It was a struggle to get palliative care for her or even morphine,” says Dr Royappa who is planning to come down to India and travel across Tamil Nadu to share her experience and promote palliative care as an alternative to aggressive and invasive treatment for terminally ill patients.

“Trust in a doctor is the key. My doctor took out time and explained to me my condition, treatment options and outcomes, and where I am heading as well as the best available solutions for me. This made it easier for me to make a decision,” says John.

In the West, in most such cases, doctors withdraw life-prolonging treatment and instead provide palliative care, but this is rare in India. “Doctors here have to realize that just as you respect life, you also have to respect death and dying. Families have to understand and accept that rather than make their loved ones suffer, it is better to let them go in peace with love. This is something that society also has to think about,” says palliative care expert Dr MR Rajagopal.

Stressing the quality of life for terminally ill patients, Dr Rajagopal says if a disease can be controlled and life prolonged ensuring reasonable quality then it should be done. “But when death is inevitable then prolonging it for a few days or weeks causes untold suffering to the patient and family. There is a tube going down almost every part of the body and it can be immensely painful. And you are practically imprisoned in an ICU, without seeing your family. There is no difference between day and night. One-third of the young and two third of the elderly patients lose their minds in the first 48 hours. When my time comes, the most precious thing for me is the presence of my loved ones, a hand to hold, and some loving words spoken. But most often this is systematically denied,” says Dr Rajagopal.

To ensure that the physicians and family comply with his decision to decline lifesustaining medical treatment, businessman and philanthropist Kochouseph Thomas Chittilappilly has prepared a will and registered it.

“This needs to be done when you are in good health and mentally sound and able to convince your family. I respect modern medicine that has helped me live till now but after a certain age I don’t want any lifesaving procedures provided by corporate hospitals that are profit-oriented,” says Chittilappilly. This is not something new. In the West, the patient is at the centre of everything, and every decision is taken with the consent of the patient. But in India, in most cases, families take centre stage and doctors often collude with them to decide on the treatment plan. The problem arises when they decide not to discuss the problem with the patient and even ask the doctor not to share any information with the patient. They do so because they fear the patient may not be able to handle the news of their illness. In certain situations, a loved one takes a decision out of denial. They believe God will protect and heal their loved ones. At times, family confusion and disagreements come to the fore; the spouse may say one thing, the children something else.

“Once a patient decides on the course of treatment they seek, families are very adaptable to it. When the patient makes their wishes known, families don’t go the other way always. But at the same time, when the patients are not able to vocalize their priorities, or they are not in a position to make decisions, it leads to confusion,” says oncologist Dr Aju Mathew

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