He who has a “why” to live can deal with almost any “how”. -Nietzsche (1)(p.IX)
According to Global Cancer Data from GLOBOCAN 2018 (2), an interactive web platform that consolidates worldwide cancer statistics, in India, of 2.2 million cancer patients, 784,000 die annually. This number has doubled since 1990 (3). The age-standardised mortality: incidence ratio for India is 0.68, which is higher than that of very high human development index (HDI) countries (0.38) and high HDI countries (0.57) (4). This is a big concern as India has a relatively younger population than those countries and hence is expected to present lower age-adjusted mortality indices. Part of this mismatch can be attributed to better screening practices in high HDI nations, but a large part of it is because of inequitable access to quality cancer care, lack of affordability in care and delayed diagnosis of cancer due to stigma related to the illness and a lack of awareness of its symptoms (5).
Various myths and misconceptions regarding cancer cause delays in patients seeking medical care. A survey of 95 cancer patients in Delhi showed that one third of the patients believed malignancies can be detected in early stages and that they are curable (6). Most of the surveyed patients were reported to hold fatalistic views about the outcome of cancer and 60% felt that their family and society were discriminating against them because of their cancer diagnosis. As a result, the average time taken by patients to report to a doctor after suspecting their disease was 2 years (6). By that time, their cancer has often developed to advanced stages (7–9). Moreover, limited access to palliative care and comprehensive cancer treatment services contributes to the high mortality rate from cancer in India. Less than 4% of patients with serious health-related suffering have access to opioid morphine-equivalents (10). Also, more than 75 percent of cancer expenditures in India are covered out-of-pocket, which indicates that access to affordable and equitable cancer care in India still remains a major challenge (11).
Combined with the prevalence of advanced stage cancer at the first diagnosis, the limited access to cancer and pain treatment resources along with the social stigma around cancer largely explains poor quality of life (QoL) of Indian advanced cancer patients. There is comprehensive literature showing that cancer patients with poor QoL often harbour a desire for hastened death (DHD) (12–15). The frequency of reporting DHD among advanced cancer patients is noticeably higher than that among patients in nonpalliative stages of cancer (16), which is a significant concern for healthcare professionals and stakeholders (17). Despite the urgency of the issue, there is limited research on factors that may increase DHD in advanced cancer patients, particularly in the context of India.
The aim of the study is to fill this knowledge gap by identifying contributors to the desire to live (DTL), the other side of DHD, with advanced cancer patients in a tertiary cancer centre in Jaipur, India. Previous studies, mostly conducted in developed countries, provided evidence that DTL (or, DHD) was associated with various physical, psychological, spiritual, social or interpersonal and spiritual factors. For instance, one study reported that as many as 77% terminally ill patients desired to hasten death because of experiencing moderate to severe physical pain (18). The psychological and emotional distress of cancer patients is also negatively associated with their DTL. Individuals with advanced-stage cancer reported persistent depressive symptoms more frequently (19) and both depression and hopelessness independently predicted DHD of metastatic cancer patients (20). In particular, patients with low socio-economic status (SES) tend to reveal a higher prevalence of depression (21). In addition, experiencing low social support hinders people’s ability to find meaning in their lives, which contributes to high DHD. Lastly, spiritual well-being or belief in a higher power has been established as an important protective factor that keeps depression and hopelessness at bay and builds some tolerance to physical symptoms (22).
Guided by the evidence, we collected patients’ awareness of their advanced cancer along with multiple indexes measuring their QoL, in terms of physical (e.g., pain severity), psychological (e.g., self-blame), spiritual (e.g., faith), and social support (e.g., social stigma) dimensions, and examined the association of DTL and these variables. We hypothesize that patients who suffer from severe physical pain, a high level of anxiety & depression, and have low spiritual well-being and social/family support are likely to have a lower DTL. We also hypothesize that patients from a socially and economically disadvantaged group are likely to present a lower DTL, holding other factors constant.
Focusing on the second hypothesis, we further seek to investigate whether there are significant differences in the QoL factors, by patients' perceived socio-economic strata. We hypothesize that patients who reported to have lower SES would experience higher social stigma, psychological distress, and lower interpersonal support. Testing this hypothesis is especially important in a country as diverse as India with multifaceted segmentation based on caste, class, religion, regional economic advancement, and language. For instance, at the regional level, development of palliative care and pain management services is uneven in that there is greater provision of the services in the southern parts than the north (23). The unequal access to these services is consistent with regional economic gaps that five states of south India account for about 30% of India’s Gross Domestic Product (GDP) while eight states of north India account for only 2.8% (24). We expect QoL disparities by SES exist at the household/individual level as well.
To the authors’ best knowledge, there are no prior studies comprehensively examining the association between DTL and various QoL factors among advanced cancer patients in India. Previous work with cancer patients in India has rather focused on the prevalence of suicidal ideation (14, 15). We expect findings from this study to deepen our understanding of various factors that may affect DTL in a regional cancer centre in India. This would provide insights into advanced cancer patient care not only in India but in many other developing countries where palliative and pain care services are limited.