A misconception exists that patients in India do not want to know about their diagnosis or treatment, preferring that this information be handled by the family and the doctor. A new study conducted on newly diagnosed cancer patients indicates this theory is untrue.
The survey of newly diagnosed cancer patients and their families revealed that ninety percent of patients preferred to be aware of their diagnosis, prognosis, treatment options and the potential for survival or side effects resulting from the cancer or its treatment. This was common across all religious, social and economic backgrounds.
Somewhat counterintuitively, only 27 to fifty percent of family members stated that they would want the patient to be made aware of the details of their diagnosis. In this sense, the belief that Indians prefer for their medical details to be handled by either the family or doctor has some grounding in reality. However, this decision is apparent only in the family, with the overwhelming majority of people preferring to be made personally aware of their situation.
Interviews with 250 patients and 250 carers noted that the patients felt the information could allow them to better prepare for any eventualities related to the diagnosis. Relatives, however, felt the information could add to the stress of the patient and therefore negatively affecting disease outcome.
Cancer is one of the leading threats to public health in India. An estimated 2.25 million people live with the disease in the country, with more than 1.15 million new cases registered and an estimated 784,821 deaths recorded last year. As such, defining the outlines of patient autonomy on the matter is essential.
Dr Naveen Salins, head of the department of palliative medicine at Kasturba Medical College Manipal and one of the study authors, notes that doctors in India too often give in to the family’s demands for non-disclosure. This often leaves patients in the dark regarding their condition, with no knowledge of prognosis. Cultural factors have made this the norm, with even some patients saying they would prefer details to be held exclusively by the family.
The study proves that communication skills currently used by doctors are in need of change. Patient autonomy must be upheld and in order for this to occur doctors must be retooled to be better able to communicate the details of the condition, with the patient, the patient and the family, or the family alone according to the needs of the individuals being diagnosed.