Significance of End-of-life Dreams and Visions Experienced by the Terminally Ill in Rural and Urban India

BACKGROUND: End-of-life dreams and visions (ELDVs) are not uncommon and are experienced by many near the time of death. These visions can occur months, weeks, days or hours before death. We wanted to document ELDVs, if any, in rural and urban settings in India, where talking about death is usually considered a taboo and also to compare its incidence with the urban population. PRINCIPLE RESEARCH QUESTION: Do terminally ill patients receiving home care in rural and urban India experience ELDVs? If yes, then an enquiry into the nature of such ELDVs. STUDY DESIGN: Prospective, cohort based, with a mixed-methods research design. METHODOLOGY: 60 terminally ill patients with Palliative Performance Scale of <40, who consented to participate in the study were enrolled and questioned about the occurrence of ELDVs if any. Questions were both closed-ended and open ended regarding the content, frequency, recall, associated symptom burden, etc. RESULTS: 63.3% cases reported experiencing ELDVs. 55.5% of the rural patients reported ELDVs while 66.6% of the urban patients did the same. 78.9% (30) of the subjects were able to recall the ELDVs vividly and in detail, 13.1% (5) subjects were able to recall somewhat and 7.8% (3) subjects had trouble in recalling them. 84.2% (32) subjects reported the ELDVs as 'distressing'. 30 subjects (78.9%) reported seeing 'deceased' people, be it relatives, friends or acquaintances. 12 (31.5%) saw living friends and relatives, 52.6% (20) saw people or forms that they did not recognize, 21% (8) visualized making preparations or going on a journey. 76.3% (29) patients had a symptom burden of >7 (on a VAS of 1-10), which corresponded to 'severe distress'. 94.7% (36) patients felt much better having discussed their ELDVs with the team. CONCLUSIONS: The results of our study suggest that ELDVs are not uncommon in India and the incidence does not differ significantly between rural and urban population. Our subjects found them to be distressing initially, but felt better after discussing it with our team. There was a direct correlation between severity of symptoms and occurrence and frequency of ELDVs. Another finding exclusive to our study was that the persons visualized in ELDVs did not threaten or scare the patient and the known persons visualized were seen as they were in their prime of health. We feel that addressing such 'issues' is of paramount importance with a view to providing holistic care. I feel that they strongly suggest the presence of life after death and when properly explained, can reinforce a sense of hope.