Knowledge, Attitudes, and Practices Regarding Palliative Care: A Mixed-Methods Study from Bihar, India

To The Editor, Even though palliative care has been present in India since the mid-1980s, provision of services has not kept pace with demand: coverage is poor as evidenced by per capita morphine consumption (a proxy indicator for access to palliative care). There have been very few studies in the literature which systematically examine the knowledge, attitudes, and practices (KAP) of palliative care providers in India, and none in Bihar, a populous state in North India of over 110 million. Our mixed-methods study addressed this gap and examined the knowledge, attitudes, and practices regarding palliative care among healthcare providers (nurses and doctors) in Patna, Bihar. We designed and validated a 16-item, self-administered, cross-sectional survey and triangulated this data with semistructured, in-depth interviews with providers. The questions in the survey were adapted from the validated Palliative Care Quiz for Nursing (PCQN) questionnaire and a survey tool used to understand perceptions of undergraduate medical students in Oman. After a thorough literature review, the tool was adapted to better fit the Indian context, and pre-tested with 30 doctors and nurses prior to implementation. During the survey implementation, we purposively sampled nurses and doctors across 5 leading tertiary care and cancer hospitals in Patna in order to obtain a wide variety of respondents from different medical specializations, age groups, years of experience, and gender groups. Written informed consent was obtained from every provider who took part in the study. Frequency and chi-square tests were conducted to compare respondent groups, and survey responses were scored with 1 point accorded for each correct answer (maximum possible score: 22 points); incorrect and ‘‘do not know’’ responses received 0 points. A wide variety of healthcare providers, including some who took part in the survey, were then purposively sampled for semi-structured, in-depth interviews (IDIs) on the basis of maximum variation sampling. In total, 13 in-depth interviews were conducted with healthcare providers. A descriptive and scored analysis of the survey responses was conducted to understand knowledge and attitudes regarding palliative care among healthcare providers. Thematics generated from the IDIs were then used to uncover variations in attitudes and practices between healthcare providers through an inductive, thematic analysis in NVIVO 11 (QSR International). 110 healthcare providers were approached for the survey, and 80.9% responded. Respondents ranged in age from 22 to 68 years; with 39.3% male (n1⁄4 33) and 60.7% female (n1⁄4 51) as shown in Table 1 below. There was no significant association with gender, years of experience, or profession, but younger participants (<35 years of age) scored 3.5 points lower (p < 0.001) on the survey in comparison to participants older than 35 years of age. Doctors did not appear to be any more likely to perform better on the survey compared to nurses, as shown in Figure 1 below. In general, respondents performed quite poorly on the survey with a mean score of 14.4 among doctors (65%) and 13.3 among nurses (60%), out of a maximum possible score of 22 points. Our qualitative findings similarly indicated a lack of awareness regarding palliative care and limited service provision in Bihar. Lack of access to critical medicines such as morphine created major barriers for doctors and patients: ‘‘even a simple provision of medicine like morphine . is very limited . we can’t prescribe morphine without seeing the patients’’ [Health Provider 12, female, age 40, doctor]. Secondly, healthcare staff, including doctors and nurses, who were younger tended to have a harder time articulating the definition and components of palliative care in comparison to older, more experienced staff. ‘‘I think the . patients who are not . uh, meaning, we cannot cure them of any disease . the measures we take to improve their quality of life, to at least . I mean, till the time they are surviving, they can be . meaning, free of distress’’ [HP 7, female, age 26, junior doctor]. In contrast,