Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information; but these hypotheses lack evidence. Low-income and middle-income (LMIC) are predicted to bear 70% of global cancer cases by 2030.
As LMIC industrialise, cancer incidence is predict to rise five fold. Clinicians anticipate poorer cure rates compare with high-income countries due to late presentation; so lack of locally adapt protocols and fewer resources. Similarly, the provision of palliative care is woefully inadequate in LMIC; so where the majority of palliative and end-of-life care is need, due to later presentation, fewer curative options, ageing populations and rising cancer incidence.
As in many other LMIC, Indian households affect by cancer report lower workforce participation, and higher rates of borrowing and asset sales; so compounding their poverty. Most out-of-pocket expenses are on futile investigations, treatment and expensive diagnostics. While most Indian cancer patients prefer to know their diagnosis; so around one-quarter do not, and would prefer information to be communicate only to family members.
Palliative care in India
Research is thus need to identify the best ways to help guide physician patient and physician family communication. Understanding cultural beliefs that shape access and delivery of cancer palliative care in India; so it is essential to formulating an appropriate response, but unfortunately, very little data currently exist to inform such a response.
Transcripts were then anononymise email to the other research team members in the UK and USA. Following reading and familiarisation with the transcripts, an initial coding frame was develop with line-by-line coding (ie, data reduction) of the entire data set by one researcher (RH). The individual transcript coding and propose frame were then review by a second researcher (ME) and refine through consensus.
They then integrate the codes to develop the novel explanatory model (ie, data complication). The coding frame, resultant model and interpretation were then discuss with the third researcher (SN), and agree through consensus. This is the first study to determine the role of stigma in advance cancer in India; so integrating primary data from patients, family members and oncologists.
Although there is a literature identifying this as an area of importance and cultural specificity; so it has lack original data or an explanatory model of the mechanisms incorporating all potential actors in stigmatising processes; so to inform which interventions might be theoretically plausible and acceptable. This exploratory study has generate a novel model that identifies the role of stigma in expressing needs in advance cancer; hence communication and disclosure and in accessing palliative care.
Clinical teams and families
The multi-level model reveals the collusion between clinical teams and families that leads to pursuit of expensive and futile treatment; so insight on the part of patients and sub optimal use of the wide range of interventions available through palliative care teams. Stigma is enact and perpetuate at all levels; so including by clinicians who do not openly communicate poor prognosis, family members who request this concealment and by services that are simply describe as ‘pain management.”.
Second, there data were only collect in one private, non-profit Indian medical college hospital and they strongly recommend the expansion of this model; hence through primary data collection in other types of institutions and multiple parts of India. Third, there may have been both a sampling and participation bias; which is in that those with insight but a poor reaction to the information may not have consent to participate. They are not aware of any conflicts of interest in this study.
This will require oncology and palliative care services to use terminology that identifies palliative care as being more than simply a physical pain service, and enabling families to hear patient distress. Fifth, interventions must be develop from an expand theory of stigma in advance cancer; so refining there model from the exploratory data using data from a wider geographical sample of oncologists, patients and families in India.
There novel theoretical model is an essential first step to ensure that any propose complex intervention is plausible; also has a propose mechanism of action that addresses all relevant stakeholder populations. Taking a family centre approach, with an oncology workforce skill in communication; also an enable patient population may be feasible and acceptable. Through this, improve access to palliative care with improve outcomes may be attainable.