Learning to accept end of life care and palliative support Premium

Psychologist R. Vijayalakshmi shares poignant stories of patients facing terminal illnesses, highlighting the importance of end-of-life care decisions.

Psychologist and counsellor R. Vijayalakshmi vividly recalls her interactions with a 26-year-old mother of an 18-month-old boy from eight years ago. The mother was diagnosed with cancer. When counselling began, the mother had just a few months to live. Ms. Vijayalakshmi visited her periodically. “She showed me her photographs. She was beautiful and did not want her son to see her as a sick person. When she realised that she was not going to recover, she started talking about her funeral. She chose two different saris that she wanted to be draped in, depending on whether she died in the morning or evening. Her mother broke down at this point,” Ms. Vijayalakshmi recalled.

Continuing her recollection, she said: “Her mother loved dressing her up as she was her only daughter and could not bear to listen to her daughter’s last wishes. I talked to her separately and the mother finally said, ‘I will stitch her a blouse so that it fits her as she is now’.”

“Certain things are not about physical health,” Ms. Vijayalakshmi said. “The respect we give a person has a lot of meaning.”

Sixty-four-year-old Usha is now tending to her 90-year-old mother who has stage 2 chronic kidney disease and is also tending to her 98-year-old mother-in-law. Her husband,74, is a COVID-19 survivor. Despite having the help of caregivers Ms. Usha rarely leaves home and works virtually. Her mother is immobile, and her eyesight has failed.  “We have sleepless nights as she gets hallucinations. I feel sorry about the agony she is going through,” Ms. Usha says, recalling how as a youngster her mother embroidered her dresses.

Anita’s mother is 94 years old. “Every morning I wake up thinking this could be the day (of her demise). I plan for the things that I need to do if that happens,” she said. An only child she gave up a lucrative job abroad four years ago to tend to her ailing mother. 

While most people find it difficult to discuss end-of-life care (EOLC) and the decisions that must go into this process, experts say that it is becoming and increasingly important aspect of health, both as longevity has risen and also due to the burgeoning ageing population in the country.

While the primary goal is to ensure that patients are as pain-free as possible and continue to live with dignity, another aspect of this is to also provide supporters to family and caregivers who may struggle under the physical and emotional toll that this may place on them.