By Kalyani Subbiah, School of Development, Azim Premji University, Bangalore, India
A periodic refrain heard in public health debates in India today is the need to better understand ethical dimensions in care-giving within the health system. Some of these dimensions are most manifested in interactions with women screened or diagnosed with gynecological cancers.
One of the pertinent issues in this care-giving context is the conspiracy of silence around issues of sex and sexuality. The cultural norms around sexuality impede effective communications between providers and patients and, as a result, impact cancer care management. Social hierarchies between provider and patient may result in shame, embarrassment and fear of judgement among women and inadvertently affect communications. Unless there is an enhanced and nuanced understanding of possible impediments women face in screening and care seeking behavior, creating appropriate health information strategies within clinical settings for gynecological cancers will remain inadequate – at best.
We need to remember that for many women any care seeking behavior still occurs within the contexts of pregnancy and childbearing in marriage. The decisions for cancer care may be similar to her decisions on other aspects of reproductive health – tied tightly to her partner and marriage. The provider’s participation in the journey of her decision-making is as much about favorable clinical outcomes as about sensitivity to the everyday realities and options available to her.
Information exchange in clinical settings could be more enabling with some planning. Using visual aids, creating an internal chain of resource support for pre and post-test counselling, handling family interactions sensitively and proactively and capacity-building of staff for counselling support will go a long way in paving a more robust wheel of critical clinical communication with patients.
Understanding both expressed and unexpressed needs of patients is complex when providers grapple with time and resource crunches. The high patient ratio especially in public health facilities poses severe stress on them. Further, social norms expect providers to take total accountability to preempt all of a patient’s and her family’s concerns within settings of urgency and extreme resource constraints.
Yet, the path for a woman screened or diagnosed with a gynecological malignancy is most traumatic for herself. To negotiate care and cure legitimately requires a much deeper understanding of her constraints by those who help manage her care and facilitate her health decisions.
A multi-tiered interpersonal communication strategy is critical for providers working with women dealing with gynecological cancers in India – an insight into their lives along with disease progression and support processes/ aids that allow providers more holistic assessments and treatment options for women. Last, time-tested trust-building is the pivotal element that will likely assist a woman in the long-run to make informed decisions about her health.