Patient Rights Is A New Concept in India & A Controversial One, I Learned


(9-19-16) This is the first of three blogs about my recent trip to India where I toured mental health facilities.)

“Individuals with mental issues are incapable of making their own decisions.”

“I disagree. They are not condemned to impaired thoughts 24/7 and their voice needs to be respected.”

It’s an argument that could be heard in any American city. But I was hearing it in Chennai, India during a three day conference on Justice and the Rights of Homeless Persons with Mental Health Issues.

I’d been invited to give the conference keynote and, unknowingly, my talk thrusted me into a spirited debate in India about patient rights.

Vandana Gopikumar, a co-founder of The Banyan, one of the largest mental health service organizations in India, had read my book, and invited me to speak. (More about this amazing advocate and The Banyan in upcoming blogs.) Of course, I spoke about my son, Kevin, and his recovery. Mid-way through my talk, I mentioned what I see as an ongoing feud in mental health circles in the United States.

 On one side are advocates who believe if we simply had decent community services and patience we could get people engaged in their own recovery. Problem solved.  And I’m sure that’s true. My son got better when he finally received the wrap around services that he needed – he got a good doctor, a case manager, supportive housing, and job training. He was given hope and respect. Someone listened to him.

   But Kevin had all of those things when he first became ill. He had a family who loved him. He had access to good medical care and the best doctors. He was in college working toward a career. He had a safe place to live – and yet none of those things could keep his illness from robbing him of his sanity.

   On the other side of this debate are mental health advocates who believe involuntary commitment and forced medication are the solution. How can you help someone who is seriously mentally ill if that individual doesn’t even understand that he or she is psychotic?  And that’s true too. My son’s longest period of stability was during the period when he was on two years of court ordered probation and required to take his pills.

But it didn’t last. And I quickly realized that no judge is going to keep continuing a court order when someone starts to look well and probation ends.

 You see, Kevin was not invested in his own recovery so he always relapsed. Forced hospitalizations were, at best, temporary Band-Aids but they were not a permanent solution. Coercion, although it might be necessary, generally causes resentment.

I have come to believe that this ongoing feuding between us is counter-productive. There is no one size fits all solution. There are times when community services are enough and there are times, unfortunately, when involuntary hospitalizations are necessary. We have to meet persons where they are in their illnesses. Every one of our loved ones is different and that makes the tools that are needed to help them fight these illnesses are different too.

The key to Kevin’s recovery, I explained, came after he accepted that he had a mental illness and decided to do something about it. I quoted Dr. Tom Insel, the former director of the National Institute of Mental Health, who once explained:

“One of the really tough things about managing an 18-year-old who is becoming psychotic is to get them involved in their own care. What you want to do is to be able to join the person in the world that they are in at the same time that you help identify the healthy part of their function so you can say to them: what is it you are trying to accomplish and how can we help you get there.”

For me, shifting from the role of being a parent to becoming my son’s partner was crucial.

I learned about active listening. I learned to show my son empathy and respect. By listening and showing empathy and respect, I hoped to develop trust and rapport. And with trust and rapport, I hoped to gain influence.

This didn’t mean that I opposed involuntary commitment. But it became my last choice in emergencies, not my first. Active listening, empathy, respect, trust, and rapport — if I had tried to use those skills initially and at different intersections during Kevin’s breakdowns, I believe we could have avoided much of the trauma that both of us experienced. I believe we could have become partners in his recovery, rather than adversaries. I believe, I could have engaged him earlier in his treatment.

It was immediately after my speech, during the Q & A, that I discovered India is currently involved in a rigorous debate about what role individuals with mental illnesses can or should play in their own treatment. Much of this argument is being waged between psychiatrists and mental health advocates.

“The concept of a patient questioning a doctor is new for many of us in India,” one of my hosts, Mrinalini Ravi, explained later. Many Indians were taught not to question a doctor or even ask about what sort of treatment plan their physician had chosen for them.

This blind acceptance has deep cultural roots and if a patient, who does not have a mental disorder, finds it difficult to question a doctor, consider how much harder it would be for someone with a mental illness.

A new piece of legislation called the Rights of Persons with Disabilities Bill in India is challenging this long held tradition. It would be the first major overall in India of its mental health laws. The current Mental Health Act of 1987 is a badly outdated revision of an even more arcane Indian Lunacy Act of 1912, which was drafted to “protect society from the presence of mentally ill persons who have become or might become a danger or nuisance to others.”

Under the new bill, individuals with mental illnesses would have the right to mental treatment equal to physical treatment, protection from inhuman and degrading treatment, free legal services, access to their medical records and “the right to complain regarding deficiencies in the provision of mental health care.” The bill also would give patients the right to submit advance directives to doctors, explaining how they want to be treated and who their representative should be if they are incapable of making a rational decision.

This acknowledgement of patient rights through advance directives is one of the clauses that psychiatrists and, some caregivers, find troubling, so much so, that a caveat was added to the final draft of the bill. A doctor can challenge a directive by appealing to the local Mental Health Board (made up primarily of other doctors) and asking it to review, alter and/or cancel the advance directive.

The idea of listening to someone with a mental illness and engaging them in their own recovery strikes many Indians as unrealistic, including several at the conference who questioned me after my speech.

Akhileshawar Sahay, an activist with bipolar disorder who often describes himself as the “Mad Man of India,” expressed frustration about patient rights, questioning how someone who is sick can make rational decisions. “My son won’t let me go with him when he sees his psychiatrist,” he complained.

Another audience member asked: “How did you get your son to take his medication? My son refuses to take his. He should have to take them because they help him.”

Had I closed my eyes, I could have imagined myself back in the states listening to the exact same questions, the exact same frustrations, and the exact same arguments that I hear after one of my talks.

As I explained in my speech, this ongoing feud might never end. But the fact that discussions about patient rights are being held on a national level in India, to me, is a welcome sign. It recognizes that individuals with mental illnesses are persons, not simply patients, and in a nation where impoverished individuals with mental disorders are ranked even beneath DALITS (untouchables in a caste system) that is a major and important step.

(Next: mental health challenges in India)

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.