Exploding a common misconception in India that patients dont need to know much about their illness or treatment, a survey done among newly diagnosed cancer patients and their families showed that almost 90% of cancer patients, irrespective of their religious, economic and social background, wanted to know about the seriousness of the illness, treatment and its side effects. However, only 27% to 50% families wanted such details to be shared with the patient.
The study done in Tata Memorial Hospital Mumbai, which included 250 patients and 250 caregivers from across India, was recently published in the Journal of Global Oncology. The 2017 study revealed that over 85% of patients wanted to know about the future course of illness, future symptoms and complications whereas only 30% of families wanted their patients to have this information. Almost 73% of patients preferred to know how long they were going to live, whereas only 8.8% of families wanted their patients to know their expected length of survival.
During the interviews, patients said having this information would help them be mentally prepared, take precautions, plan for the future, plan for family and cope with the illness. However, the families feared that this information could add to patients worry and stress and could negatively influence the course of illness, and cause patient to lose hope and confidence.
“A patients autonomy, right to their health information and their preferences should be respected. But our health system makes them powerless, vulnerable and without any say in their treatment or health decisions. This is also because our healthcare providers are not trained to communicate diagnosis or prognosis and they lack awareness regarding patient autonomy. Thus they give in to the family request for non-disclosure without discussing the merits of disclosure,” said Dr Naveen Salins, head of the department of palliative medicine at Kasturba Medical College Manipal, one of the study authors.
He also said that he hoped the study could change the practice and attitude of doctors and help them to skill themselves in more effective communication.
The study also stresses the need to take into account the small percentage of patients who expressed reservations about full disclosure of information. Many of them feared that it could lead to increased stress, anxiety, and depression and could have a negative impact on future treatment choices. They also wanted prognostic information to be communicated in positively framed language, in terms of suRead More – Source
