Nursing staff, nursing staff holding elderly woman’s hospice care. Charity concept for people with disabilities. Photo credit: Pornpak Khunatorn
Psychologist and counselor R. Vijayalakshmi vividly recalls an interaction she had eight years ago with a 26-year-old mother of an 18-month-old boy. Mother was diagnosed with cancer. When counseling began, my mother had only months to live. Ms. Vijayalakshmi visited her regularly. “She showed me pictures of her. She was beautiful and didn’t want her son to see her as a patient. When she realized she wouldn’t recover, she started talking about her funeral. She chose it based on whether she died in the morning or evening She had two different saris draped over her and her mother collapsed,” Ms. Vijayalakshmi recalled.
She went on to recall: “Her mother loved to dress her up because she was her only daughter and couldn’t bear to hear her daughter’s last wishes. I talked to her alone and the mother finally said, ‘I’ll sew her a shirt. , to make it fit the way she is’.
“Some things have nothing to do with physical health,” Ms. Vijayalakshmi said. “The respect we give a person means a lot.”
Usha, 64, is now caring for her 90-year-old mother, who has stage 2 chronic kidney disease, and her 98-year-old mother-in-law. Her husband, 74, is a COVID-19 survivor. Despite the help of caregivers, Ms Usha rarely leaves home and works virtually. Her mother was motionless and her eyesight was failing. “We stayed up all night while she was hallucinating. I felt bad for the pain she was going through,” Ms. Usha said, recalling how her mother would embroider her clothes as a child.
Anita’s mother is 94 years old. “Every morning I wake up thinking this could be (the day she dies). I plan what I need to do if that happens,” she said. An only child, she gave up a well-paying job abroad four years ago to care for her ailing mother.
While most people find it difficult to discuss end-of-life care (EOLC) and the decisions that must be made during the process, experts say the need for end-of-life care (EOLC) is increasing as lifespans increase and as the country’s population ages rapidly.
While the main goal is to ensure that patients are as pain-free as possible and continue to live with dignity, the other side is also to provide support to family members and carers who may be suffering physically and emotionally.
Asoke Chackalackal Mathew, a palliative care doctor who runs the Search Foundation in Chennai, called for guidelines to allow elderly and terminally ill patients to choose the type of treatment they want and whether it should continue treat. He created advance medical directives (AMDs) that patients could sign if they were of sound mind.
“We must ensure the dignity of those involved. Patients have the right to know their disease and its treatment options. Therefore, we promote AMD so that patients can die with dignity (what we call a good death) rather than suffering from severe illness at the end of their lives. People in intensive care units suffering with tubes inserted into different orifices in the body – not if they want to,” he said. He said two-thirds of those who died required hospice care, with many dying in intensive care units because the country lacked such care.
Dr. Mathew also cited the Supreme Court’s March 9, 2018 decision, which allows adults of sound mind to leave advance directives regarding the end-of-life treatment they wish to receive.
In addition to comprehensive national legislation on end-of-life care (EOLC) decision-making, efforts must also be made to raise public awareness of the normalization of death (a workshop in Mathura produced a manifesto in 2017); and to develop a palliative care movement And use celebrities to declare: “I have made a living will. You? Create an insurance plan to financially manage the EOLC days.
Undergraduate medical curricula should also include medical ethics, communication skills and discontinuation decision-making, he added.
(To protect privacy, some names have been changed)
Published – December 20, 2024 at 05:08 pm (IST)