Abstract
•Identify myths about cancer and terminal prognosis that may inhibit the spread of palliative care in India.•Consider strategies to overcome these palliative care myths in India and other developing contexts. Roughly 2% of people have access to palliative pain and symptom management in India. While there are many factors that limit the access to and use of palliative care, this paper aims to identify myths about palliative cancer care and terminal prognosis that may inhibit the adoption and spread of palliative care in India. We use a quota sampling approach to capture the perspectives of local stakeholders from 7 palliative care practice sites throughout India. We collected a total sample of 44 interviews from the following 3 categories (organizational leaders, clinic leaders, and clinical team members) through a semi-structured interview guide. We identified emergent themes using standard qualitative content analysis methods. Myths influencing decision making for palliative care: Theme 1—Cancer is contagious “…cancer is sometimes they[patient]think it is contagious… that is why it affects our [PC] services…” Theme 2—Palliative care is only for patient with cancer “…we are like most organizations in India we are doing mostly cancer palliative care…our training for management of non-cancer palliative care is still very much lacking…” Theme 3—Palliative care is only for end of life “even if you tell a patient that we are referring you to palliative care, they assume that we are actually giving up on actual cancer care..” Theme 4—Quality of life is not relevant when patient has a terminal illness “…probably doctors as well as patients feel that ok we are in the terminal stage why should we need any care kind of a thing…” Theme 5—Managing pain is “giving up.” Myths about what palliative care means and who it is for persist in India and impact perceptions of the appropriateness and acceptability of palliative care.
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