ABSTRACT
Understanding spirituality during palliative care training is not easy. It slowly unravels itself when one starts caring for patients and meeting their caregivers. One such experience in the hospice has been described in this narrative. A person with advanced incurable cancer is initially in severe distress. Over time, he slowly comes to terms with the situation and eventually, a question from his illiterate wife—an insightful question about any last wish—brings out his desire to have certain religious rituals that were alien to his own religion. After his death, the family members concur with his last wish and also indulge in some religious rituals of their own choice. This story reaffirms that the essence of spirituality is the coexistence of harmony and humanity.
The concept of addressing spiritual distress in terminally ill patients had always intrigued me. I was unsure about how to initiate this issue when I was pursuing the National Fellowship in Palliative Medicine. It slowly started coming together as I began interacting with patients and their caregivers, and one such interaction is etched in my mind.
Pantulu (name changed) was the local postman's brother. He was brought to the hospice because, in his wife's words, he had “started tearing apart the curtains at home because of his pain.” Physically, he certainly did not look like one who could tear curtains apart. He was small built, thin, and short, with bright, tormented eyes and a wide grimace, when I first saw him. His wife told us about his cancer of the colon, his surgery, his chemotherapy, and how all the treatment options had been diligently followed. They had then been asked to go home a month ago. He now had a cutaneous metastatic abdominal nodule and full marks on his pain score. She was pleading us to do something. They had traveled a long way, and there was a mixture of hope and desperation in her eyes.
We started morphine for pain relief, and it worked beautifully in transforming that wide grimace into an even wider smile. That is my fondest memory of Pantulu. He enjoyed visiting the hospice, had multiple admissions for various issues, and followed up regularly for about 8 months. He did default a couple of times and came back with a sheepish expression. His last admission with us was when he had a fecal fistula. His wife had always been his primary caregiver. She was not literate, but her keen insight and bedside demeanor along with her sense of equanimity made her, if such a term exists, a “perfect” caregiver. She had two teenage daughters. She sold trinkets from home to try to make ends meet without having to borrow money for day-to-day expenses. Her smile never left her face, to the extent that a week before he passed away, her husband asked her why she did not grieve about the situation. The fact that she broke down telling us about it is another story.
A couple of days before he died, she came in and told me how that morning she had a conversation with him regarding options for the future and plans for the children. She then said that she had brought a pastor to bless him. Noticing the question mark on my face, she added very simply that she had asked him, “If something happened to you suddenly, what would you want me to do?” He had replied, “Since childhood, I have always liked the rituals in a church. I would like a funeral like the Christians and a burial.”
Two days later, he had his last lunch. His wife fed him a spoon of the ridge gourd dish he had asked for, which was lovingly prepared by a volunteer. His daughter being a devotee of Sai Baba gave him the Prasad she had gotten from the temple, as it was a Thursday. Half an hour later, with his children, wife, and the hospice staff around him, he passed away and was buried the way he wanted. His family members pooled in and performed the rituals the way they wished for him and according to the Hindu religion they practiced.
This experience was, for me, an embodiment of the definition of spirituality, which says that, “Spirituality is that aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience connectedness to the moment, to self, to others, to nature and the significant or sacred.”
It also made me think of how, so often, patients in adjacent beds, who come from different cultures and different religions, stay in harmony in a hospice that follows a different faith. What connects them is the experience they are going through, the bond for a fellow human being. There are blazing reports of disharmony in the media that stare at us every day, but these day-to-day acts of respect, kindness, and generosity of spirit go largely unnoticed. It proved to me how spirituality humanizes religion and reinforced my belief that in palliative care, we have more to receive than give, and more to learn than teach, from the patients and their caregivers.
Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.