In India, especially in field of cancer care, family caregivers often ask the doctors to not tell the patients the diagnosis, the staging and the expected time for survival.But does the patient not have a right to know? And would the patient want to know? A recent study by Ghoshal A., Salins N. investigated just this question. Dr. Naveen Salins talks to PatientsEngage on the study.
Do cancer patients want to know everything about their disease process? Contrary to the norms in the western world, in India the patient is a not the sole decision maker with regards to his health and care. Family members are equally if not more responsible for informing, involving and making decisions on behalf of the patient. For an outsider, this may seem like a cultural shock, but in India where the strong sense of family ties into our very existence, this is not shocking.
A recent study by a tertiary Cancer center in India was undertaken to analyze the mentalities of patients and their care providers (family members) on issues regarding disclosing of the cancer diagnosis, prognosis and course of treatment. The study found that 81.2 % and 87.2% of the patients wanted to be given full disclosure on the name and seriousness of the illness respectively compared to just 34 and 26.8% of the caregivers.
Dr Naveen Salins, Professor and Head of the Department of Palliative Medicine and Supportive Care at Manipal Comprehensive Cancer Care Centre in Kasturba Medical College.,Karnataka and the author of this study helps us understand some of the interesting results from their research.
1. 79.2% of the care providers did not want their patient to know the expected length of survival. What could be the reasons for such a high desire for nondisclosure?
Majority (almost all) of the family caregivers would like to protect the loved ones from the trauma of cancer diagnosis. It is a protective behaviour. However, this loving protective behaviour can be counterproductive as not knowing would lead to distress of uncertainty, poor coping and unfinished business. The families who found merit in disclosing agreed for full disclosure.
Related Reading: How To Be An Empowered Cancer Patient
2. What according to you are the key gaps in the doctor-patient relationships in Oncology?
The key gaps among the health care providers are:
- Lack of skill/technique in communicating diagnosis/prognosis
- Lack of will/probably feels it is not important/
- Lack of time with the patient
- Giving in to family request of non-disclosure without discussing the merit of disclosure – colluding with the families and hiding information from the patients
3. Tension and worry are repeated concerns by patients and caregivers that seem to hamper the willingness to full disclosure in any aspect of their illness. What are some ways to alleviate and turn around these impediments?
Tension and worry are the normal immediate response to any bad news delivered. If the news is delivered well, people move beyond initial shock to acceptance, which will in turn help them to cope with their illness, have a meaningful time with their family and give them the opportunity to complete any unfinished business (personal, financial or work). On the contrary, fearing the immediate response which is the short term worry and avoiding disclosure has far reaching ramifications on the well-being of the patient, which will erode the remaining quality of life and family relationships.
4. 21.6% of caregivers said that just revealing the name of the illness will have a negative impact. Why is it that the “C” word continues to instill such fears?
The C word still instils fear largely due to the myths and misconceptions about cancer in the society. Our media and politicians also are to be blamed as they call every bad and evil in the society as cancer. Therefore, in people’s minds cancer personifies evil. Although patients arrive at a cancer centre, the uniqueness of Tata Memorial Centre is that no where there is an obvious mention of cancer or oncology.
5. Having deliberated on the results of this study, would you like to consider/make any changes to the current medical scenario in India. If so, what would they be? My recommendations would be:
The patient with the cancer or any illness should be the centre point. Their autonomy, right to know their health information, their preferences, wishes and refusals should be respected. They should participate in every decision that affects their health, well-being and life. Currently our health care system in India makes them powerless, vulnerable and they never have any say in their health decision making or treatment.
Original study:
Ghoshal A., Salins N. et al. To tell or not to tell: Exploring the preferences and Attitudes of patients and Family caregivers on disclosure of a Cancer related diagnosis and prognosis. Journal of Global Oncology, no.5 (November 01,2019) 1-12.
