Indian Journal of Medical Ethics


Crossing over: compassion at the end of life

Georgiaria J Fernandes

Published online first on February 17, 2022. DOI:10.20529/IJME.2022.013

Crossing Over: Stories from Karunashraya, Bangalore Hospice Trust, 2021, pages 163, INR 395, ISBN 978 81 95 2244 0 1

“All I could do was give her solace and companionship as best as I could, without breaking down myself.” This is what Dr Kavitha, a Medical Officer at Karunashraya, has to say remembering her patient Kamala. And this is what defines Karunashraya, which steps in for “care” when the doctors have no “cure”. Karunashraya — [literally meaning “abode of compassion” in several Indian languages, Karuna (compassion) + ashraya (abode)] — a hospice located in Bangalore, India, provides compassionate care to cancer patients at the end of life.

Crossing Over contains the experiences of 35 patients from Karunashraya. These stories have been recounted by counsellors, nurses, doctors and family members of the patients. Emotions such as guilt, despair, anger, hope, loneliness, fear, forgiveness, reconciliation, faith, love and acceptance are captured not only through these stories but also as an Afternote at the end of each section. Illustrations from 20 photographers and artists, in oil on canvas, charcoal on paper, and woodcut on natural fibres, are powerful visual representations augmenting the power of words. The content has been carefully curated and edited by Usha Aroor, and evocatively designed by Salil Divakar Sakhalkar.

The book also conveys the challenges — physical, social, psychological or spiritual — faced by the patients. Read, for instance, the story of 23-year-old Bijoy and his harrowing 18-hour journey back home. Bijoy had ‘aggressive nerve cell cancer’ (sic) and had to be brought to Karunashraya after his cancer was found to be incurable. His only wish, once he regained consciousness, was to return to his home in a small town in West Bengal. Though logistically difficult, Karunashraya arranged for his travel. But Bijoy died during the journey, and his family was compelled to get down at the next station and spend the night on a deserted platform of the station. A post-mortem was carried out the next day after the explanation given on the phone by the Karunashraya staff of the cause of the death was ignored. However, on their request, the police arranged an ambulance for the family to complete the remaining journey. Bijoy was home at last.

Though patients are at the centre of all these stories, they also capture the emotions, dilemmas, struggles, and sacrifices of those who cared for them during their final days. The stories tell us of the various measures taken to alleviate the pain of the patients and to improve their quality of life, and of the bonding between the patient and their counsellors/doctors/caregivers.

The stories are: of the orphanage where Suraj grew up, and his friends, who jointly pooled in money so that Suraj could undergo skin-grafting for his wounds; of Prem – a transgender woman, who clung to Prem — a transgender man, during his final days when no one from his family turned up because he was “different”; and of an unusual but comforting reunion between Salima Bi and her quiet and obedient goat “Jhini”, whose presence lit up Karunashraya “with smiles and tears of joy”.

The stories also present Sangeetha, the nursing tutor who learned to understand a patient’s psychology and the role of compassion in palliative care and end-of-life care; Dr Sandeep, the Medical Officer, who learned from his patient that spirituality can bring peace throughout one’s life, until the very end; and others like them who have dedicated their lives in service to terminally ill patients.

The book also tells us of the extreme decisions made by patients and their caregivers which can either fix or shatter lives in the future. I was perplexed by some of the stories, such as that of Selvi who left this earth with guilt because of her decision which ruined her sister’s life; of 10-year-old Sagar longing for his mother’s love when he breathed his last, while his mother could only come to terms with her emotional struggle months after Sagar’s death; and that of 82-year-old Raj, who met a lonely end without his family, estranged by his past behaviour. The complexity of human emotions is revealed in these situations.

All the stories in Crossing Over are the lived experiences of the nurses, doctors, counsellors, and family members who have engaged with the patients during their final days. They will serve as a guide to those, especially students, from the field of palliative care and end-of-life care and help them in being more compassionate, caring, patient, non-judgemental, and good listeners when facing patients and their families. The reflections of some of the staff of Karunashraya are also crucial in understanding how working at a hospice and caring for patients could bring change into one’s own life.

In the end, these stories also represent us, the readers. We have either faced these situations already or may, unfortunately, face them sometime in the future. As someone who has lost a family member to cancer, I wish I had read such a guide earlier so it could have helped me in becoming a patient listener and a compassionate caregiver, and with decision-making during the critical stage. This book will take you on a tumultuous, emotional ride, reveal the vagaries of human behaviour, help you understand the perspectives of all involved in these critical situations, and accentuate your empathy.

Acknowledgements: I thank Dr Sumana Navin for providing critical feedback and for helping me improve the review.