A doctor writes on the importance of palliative care and treating patients with empathy

If some pass on with anger in their hearts, there aresome others who spread love and joy around them in the brief time they are with us. This is story of a brave young girl whose sweet but painful memory will always be with us.

Eleven-year-old Thasleena was one of our patients in Calicut in the early years of our palliative care work. We had learnt a lot from our patients and families. Thasleena possibly taught us more than most about love, endurance, courage, hope, and, above all, the fragility of life.

Thasleena was a picture of sorrow. She had a huge swelling in her thigh bone; and she found it impossible to walk. The swelling confined her to a bed or a chair. It was a cancer, and the doctors had advised amputation of the leg. The family was told that a cure was unlikely.

Thasleena refused to undergo the amputation because she did not want to be half a person. Though shattered by her decision, the parents consented. She was writhing in pain when we first saw her. With our medication, the pain was gone and then the real Thasleena emerged, one who would light up an entire room with a smile. She was never too chatty, but when she did talk, it was not only about herself, her family, and her disease. She would ask questions about every patient coming into our clinic.

In those days, we did not have huge numbers; and often patients and families became friends with one another. A community eventually evolved and Thasleena certainly was a much-loved member of that community. She felt very close to two of our most senior volunteers: Meena and Lissy.

Thasleena talked easily with everyone. She would ask me questions like “What is going to happen to me?” We did talk about death. She asked a couple of questions and accepted my truthful answers. She did not want to dwell too much on it. Were there fears inside her? I was happy to leave it to her to decide the agenda of our conversations.

The swelling in her thigh grew. It came to a stage where she could not even turn to one side. The huge, ugly thing was weighing her down. We really thought an amputation was the only way to improve her quality of life. At that time, the movie Mayuri, based on a real-life story, was being talked about a lot in the media. The film’s protagonist Sudha Chandran, a young vivacious actor, had lost a leg in an accident. She not only led a normal life with the aid of an artificial limb but had also started dancing. Her dance was spectacular; the movie was truly inspiring.

During one of our heart-to-heart talks, I brought up the question of amputation again to Thasleena. It was painful for her to talk about it. It hurt me too to bring it up with her, but this is what we have to do in palliative care. That was one of the few occasions when Thasleena sobbed uncontrollably. The thought of living with just one leg was unbearable to her. I brought up the Mayuri movie and Sudha Chandran’s story soon inspired her. She watched the movie at home and the next day, she was ready for the amputation. The power of cinema!

The preoperative check-up showed that Thasleena already had metastatic cancer in her lungs. The family, for once, decided to hide the truth from her.

Following the surgery by a kind surgeon, Dr P Rajan, she had a good spell for a few months. She had learnt to manage quite well on crutches. Her mother would narrate to us at the clinic the story of how Thasleena would always offer to go to the store to buy provisions and charge an ice cream for each trip. I wondered what she enjoyed more – the trip to the store on her crutches or the ice cream.

At that time, since our work was very much in the public eye, some engineers in the Public Works Department took the initiative to convert an old cellar into a palliative care clinic for us. The formal opening was attended by many dignitaries including Dr Jan Stjernswärd, the WHO’s chief of cancer and palliative care, and Ms Gilly Burn, the palliative care pioneer. But the chief guest of the event was none other than Thasleena. As on all festive occasions, she had nagged her mother to get her a string of jasmines to adorn her hair. There was deafening applause as she made her way to the podium on her crutches and cut the ribbon to formally inaugurate the clinic.

By then, Thasleena was nursing a dream to walk again with an artificial limb. Unfortunately, destiny had other plans for her. The cancer that had spread to her lungs resulted in a rather unusual complication.

Periodically, she would get spontaneous pneumothorax (a collection of air between her lungs and
the chest wall) that would cause intense breathlessness. She would be hospitalised and a tube inserted into her chest. The pneumothorax would cause several days of trouble before it eventually resolved. Finally, during one of those episodes of breathlessness, she wanted to be brought to our clinic. The family thought it would be better for her to go to a nearby hospital to get emergency treatment; but Thasleena was adamant. On her way to our clinic, while gasping for air she asked, “Are we there?” But before she got to us, she died.

In those early days of our palliative care education, this 11-year-old “guru” taught us lessons in resilience, acceptance, and endurance. She taught us how one can enjoy life even when in pain and with death staring one in the face.

Excerpted with permission from Walk With The Weary: Life-changing Lessons in Healthcare, Dr MR Rajagopal, Aleph Book Company.