Reflection on "The Last Resort"

As a group readings activity 6 of us had to read read 5 papers and discuss the papers among ourselves and present our reflections on these papers, one each presenting one paper. We named our team "Social Justice League" and I enjoyed every bit of working in this team!
The Chapter "The Last Resort, why patients with severe mental disorders go to therapeutic shrines in India" from the book Restoring Mental Health in India. Pluralistic Therapies and Concepts by Brigitte Sebastia was the paper I had to summarise what inequities has been discussed, what sources of inequities were discussed, the methodologies used, processes that led to inequities, any ethical issues related to the study etc.

I thought this paper was significant in several ways:
1. It is studied at a time (2001-02) that is way after the Mental Health Act was in practice (1987). Thus shows how the Act was being practiced and what was the access like for mental health services in that time.
2. It depicts the equities not just for the access to mental health among different communities but also the larger inequity in how much importance was given to mental health as a subject, specialty and practice as opposed to other health issues. And the stigma around it.

We have often heard and I myself have made this comment when I had a patient who had post-partum psychosis and the family wanted to take her to a temple to make her better. I remember how I had spent a long time explaining to them thinking it's their belief that is at fault and why they need to be treated in the hospital. But later we took the decision of sending her to the temple and asking her to return after that. She did return!

We use the words "misconceptions/blind believes" to accuse the patients. But this paper describes what they found when they studied with an open mind as to why people were going to a religious shrine for therapy instead of medical treatments. It's not always belief/faith. It describes how the families ran out of money trying to get "free" treatment in the public hospitals and thus went to the shrines as a last resort. It also describes how the conditions were at that time where medical institutions/ asylums kept the patients isolated from their families, doctors seldom explained what the problem and nature of treatment was, Electroconvulsive therapies (ECT) were used more than required and was traumatising for the patients. While the shrines too violated the human rights by tying the patients to trees because of the abnormal behaviour to prevent harm, they provided an environment where the families could be a support to the person with mental illness. The families also had the social support of other families going through similar crisis. So even though they weren't becoming better, they found that a better place to be in.

Further it explains how this existing system was utilised by an NGO and a psychiatrist visit and medication was incorporated into shrine, making it more humane and acceptable.

The ethical concern I got caught up with is how much can a researcher be just a witness to these especially when it comes to violation of human rights? When such a thing is witnessed, should the researcher act on it? When does the role of researcher end and actor start? Can a researcher act on it? Even if they do, how sustainable is that? I don't think there is single answer to these. But understanding one's inclinations, intentions and positions in this as a researcher and explicitly stating it is important. These are few discussions that happened with Dr Vandana Prasad from Public Health Resource Network as well.        

 

What it means to wear the lens of health equity

Past few months have been rich with workshops. Tomorrow I'm looking forward to another one "Good Health Research Practices (GHRP)" by WHO-TDR. Before attending this I thought I should capture my reflections from the recent workshop on Health inequities research that I wrote in my previous blog post.

I always say I believe in Health equity. The 5 days of workshop really challenged me to understand what health equity meant. And how is it different from health inequity and equality. Hence I'm writing here to reflect on these through some discussion that happened in the workshop. 

Health equity is probably hard to define, but easy to define as absence of health inequity. But let's explore more.

There were two stories that stuck with me through the workshop and a few personal stories to share:
In the piece "What killed Annette Jean" in the book Infections and Inequalities by Paul Farmer, he describes the way a young woman less than 20 yrs old in Haiti died of massive hemoptysis (blood on coughing) because of untreated Tuberculosis. During this event, her brothers had to take her in a home made stretcher walking down the hill for more than an hour to only be told that she was not to be saved. Which year was this? 1994! This is a year when probably anyone reading this would have been easily diagnosed if had TB, treated and cured. So what killed Annette? A few might say their "negligence" or "ignorance" of the disease, their distance from the health centre, her gender etc. But what made her not seek care? or seek it only at a later stage? Why hadn't health care reached her? Blaming the patients for lack of awareness and ignorance is just a way of dealing with the issue in a superficial manner and hiding the underlying invisible unfair, unjust inequities that exist in the society. Is hiding a way of escaping from the invisible tougher reality of inequities? Are we in this process normalising injustice and forget asking deeper and provocative questions?

Another story of a young mother in Gujarat who was 8 months pregnant with labor pain who had to travel more than 190 km in 5 days in auto, bus, by foot, etc  starting from the day the pain started from one health facility to the other because each of them referred to the next and the family finally lost her and the child. Who's ignorance can be blamed here?!

These may seem like extreme examples but these are happening as I write in several parts of the world. But is it happening just next to us? In our own practice? Ofcourse, I see it in my daily practice and I'm sure you do too. On one hand a person who needs to make sure they're healthy gets all the tests possible (necessary or otherwise) while on the other hand another woman I saw on the same day had no money to get her sugar checked to monitor her diabetes. While a transgender person though might have the money to access health care, faces disrespect from the society and family making them not care for their health. A lady who is quiet well to do, working has no time and mindspace to take care of her health because she has to put her family, and parent's well-being first. We see this in our families, in our practice, in the society. All these are representations of inequities. Questioning them as unjust/unfair and avoidable is what it means to wear the lens of health equity. "Avoidable" here is very subjective, what may seem avoidable to one may seem unavoidable to the other. But avoidable here means all those inequalities that arise due to unnatural causes, societal causes, social hierarchies though may seem difficult to avoid must be considered avoidable. Because it's about human rights and justice we are talking about. Not whether you or I can solve this! Are all inequalities unjust? Not exactly. If the inequalities exist due to natural causes like aging, biology, they are unavoidable and are not unjust. They are mere inequalities but when they are a threat to justice, it becomes inequity. Here's an article that tries to define health equity in a very nice way. https://jech.bmj.com/content/57/4/254 (was shared as a resource by the workshop team)

Isn't this just social justice? It probably is. Isn't asking this just being a good citizen? Ofcourse it is. And health care professionals dealing with lives more than anyone else have greater responsibility and power to question these.
How do we question these?
It could be by advocating for your patients, by writing articles, by sensitizing people on the matter, through research, through questioning the accountable authority, a mix of all of these-  research, activism and practice. For eg, in the above example of the mother who died a adorable framework was asked to be used to find what caused the equities and the situation that resulted. We had to assign the various gaps as "Science/technical, Systems, Social, and Rights factors" (SSSR) and recommend what actions can be taken to fill these gaps and by whom? We were given a group reading activity as well to understand these inequities about which will be in the next post. Why do we need to understand these inequities and the pathways that lead to it? So that it gives us an insight into where we can work on and how to reduce it. Dr Devaki mentioned how the pathways that lead to inequity and equity might not be the same but it's important to understand one in order to work towards the other as they often have similar milestones or cross their ways.