by Dr Mahati Chittem
India is witnessing a significant rise in chronic diseases which is resulting in a tremendous medical and public health innovation and intervention. These efforts notwithstanding, a majority of Indians still do not have access to authenticated, mainstream medical information or care. Consequently, issues such as late presentation, non-adherence, increased costs of care, and poor prognoses remain.
A major concern with an illness such as cancer is the social stigma and negative perceptions of the disease. In spite of the advances in medical technologies and the promise of bolstering the medical education centres in the country, cancer is still considered to be a death sentence. When structural barriers to care are added to these negative psychosocial perceptions, it results in a debilitating public health concern of patients reporting at late stages when curative treatment is not possible..
Researchers at the Public Health Foundation of India (PHFI) Bhubaneshwar, Dr Sanghamitra Pati and colleagues, explored this issue using qualitative techniques among cancer patients and reported that financial constraints, low levels of medical literacy especially about the signs and symptoms of cancer, and lack of or minimal awareness about treatment options and facilities led to patients presenting with a late stage cancer in Odisha. This study suggested to us that the pathways to care are not always straightforward and are definitely not justly spread across rural and urban centres and/or across different sections of society.
Our team in the Department of Liberal Arts at IIT Hyderabad explores a variety of topics within chronic disease management including disease labeling, patient-physician communication and relationship, family-centric decision-making, self-management and adherence, end-of-life issues, and psychological outcomes of cancer. All our research uses mixed methods (ie, in-depth qualitative interviews and questionnaire-based quantitative methods) with an overarching aim of providing evidence-based suggestions for patient empowerment and, in the end, optimal patient care.
Through a range of channels (eg, journal articles, YouTube channel, conference presentations, workshops) we communicate our research findings to a wider audience of care providers, care recipients, academicians, and researchers. In this article, I'd like to focus primarily on the issues of disease communication in India – that is, the frequent practice of not openly and/or honestly discussing the life-threatening diagnosis and prognosis with the patient – and how this can be addressed through patient empowerment techniques.
In an attempt to protect the patient from the traumatic news of a cancer diagnosis, family caregivers request physicians not to inform the patient of the true diagnosis. Physicians comply with this socioculturally-driven request at the outset and, usually overtime, gradually encourage families to allow for open discussions about the disease. Meanwhile, patients are given an alternate, less threatening disease explanation (eg, bad stomach ache) or euphemisms such as tumour or lump are used in place of the word cancer. Through my PhD research in the Department of Psychology at the University of Sheffield, UK, of which two articles are published in the journal of Psycho-oncology (publication dates of 2013 and 2015, respectively), we reported that the way a person makes sense of their illness varies if they know their true diagnosis or not. Those who do not know that they have cancer report negative illness beliefs and higher levels of psychological distress.
Now this is a troubling finding because it goes against the main reasons why caregivers do not disclose a true cancer diagnosis and oncologists who initially support the caregivers’ wishes. Further, this leaves the patient at a loss as they are not only alienated/isolated (due to collusion) but also have no opportunity to develop essential coping strategies through the course of the illness treatment to survivorship or palliation. Therefore, this brings to question the motivations for and basis of these disease-related decisions, and establishes the need for honest triadic (ie, physician-family-patient) communication. While our research only evidences a correlation between nondisclosure and poor outcomes, it does not examine the exact reasons for these findings. Therefore, it is not safe to embark on communication skills training that focus on truth-telling and one should, instead, explore the sociocultural underpinnings for this unique phenomenon and its subsequent impact.
Our research, however, highlighted the need to empower patients – to take charge of their illness when they feel ready to and in whatever way they deem best for themselves. One such technique is question-asking. Research emerging from the 1990’s from colleagues in the west and Asia-Pacific suggests that a technique called question prompts may encourage patients to be able to actively participate in their care. While using question prompts has shown mixed results in Japan, this might not be the case in India where question-asking is acceptable and, sometimes, expected in the medical encounter. Further, patients do not necessarily have to ask physicians all their questions and can use this technique for their social network (e.g., family members, nurses, other patients). Thus reducing the burden on the physician as the primary information provider as well as improving the communication between the patient and their social network.
With staggering cancer statistics of 1.8 million cancer patients, 683, 000 deaths due to cancer, more than a million new cases each year, and poor oncologist-to-patient ratio of 1:2000, patient empowerment will be a welcome relief for all stakeholders. However, the true spirit of patient empowerment is to have patients choose their definition of empowerment. Therefore, we make no assumptions of all patients wishing to engage in question-asking and to take control of all or some aspects of their illness. Merely asking patients what they would like to do, so in a sense reversing question-asking to patients, could be a simple way of empowering patients. Not using a one-size-fits all communication style in the medical encounter on the part of the physician may help patients feel satisfied and cared for. Skills-building techniques for families to identify and respond positively to psychological distress in their patient can make patients feel comfortable enough to speak about their illness instead of skirting the topic. Sensitising the public about the impact of stigma on patients can reduce the fear-inducing experiences of chronic illnesses. What is important to recognise and understand is that in the centre of any medical care is the patient and they really should be treated fairly, honestly and allowed to make decisions for themselves – even if the decision is not to decide!
The author is an Assistant Professor of Health and Medical Psychology in the Dept of Liberal Arts at IIT Hyderabad who has been working in the field of chronic diseases for 13 years.