Spirituality and Truth Telling in Indian Palliative Care: Stories of a Complex Relationship

In India patients’ spirituality is strongly shaped by religion. If illness is also a spiritual experience, Indian palliative care providers need to give heed to the diverse religiosity of their patients. Although it is often argued that spirituality is very prominent in India, not much data regarding Indian palliative care patients’ spirituality are available. In 2012, we undertook an ethnographic study on acceptance of death and dying in North-Indian palliative care with a focus on the role of spirituality in this process. Early in our research, we observed a complex relationship between spirituality and truth telling regarding diagnosis and prognosis. Since the issue of truth telling has far reaching consequences on patient involvement in the medical decision making process, it is an important ethical issue. Therefore, we decided to study this relationship. We opted for an ethnographic approach (participant observation). Fieldwork was undertaken from February until October 2012 at a palliative-care unit of a tertiary cancer hospital in North India. 31 patients formally consented to participate in the study. Research notes were made on the basis of repeated interactions with the patients, their relatives and the treating physicians and nurses, and observations on the ward. The researchers had access to the patients’ medical files. The notes were analyzed using conventional content analysis. Spirituality was found to exert a large influence on how patients emotionally responded to their disease. The influence of spirituality was not one-directional. For some patients, spirituality was a source of support on their way to acceptance of their disease by providing answers to their existential questions. The fact that some Hindu patients derived consolation from the karma-theory illustrates this. Yet, spiritual views made many other patients to move in the opposite direction away from acceptance. Spirituality strongly supported hope for a cure and in that context interacted with denial. This was the case among many Hindu, Christian, Muslim and Sikh patients, who focused on a loving God who will grant them cure. This faith in a loving curing God was often actively nurtured by relatives who fearing that loss of hope for a cure would hasten the patient’s death attempted to prevent the patient from considering death as an imminent possibility. In this way, there was indeed a clear but complex relationship between spirituality and truth telling whereby spirituality was one of the factors which enabled patients to become oblivious of their true medical condition, while the fact that information regarding their disease was withheld by relatives simultaneously strengthened their belief that God would finally cure them. This condition had a huge impact on patient wellbeing in the last days of their lives when they realized that the hoped-for cure would not materialize. This caused a spiritual crisis making them wonder in despair whether God had forsaken them or did not exist. This raises the ethical question what palliative care providers should do when they are confronted with such patients. In our presentation we illustrate our findings with references to the life stories of the studied patients.status: publishe