Read part one, on India’s mental health burden and overmedication, before you read this: Decolonising mental health: How overmedication is destroying the minds of India’s mentally ill
The United Nations Convention on the Rights of Persons with Disabilities, of which India is a signatory, makes it mandatory that people with disabilities have the right to self-determination, to choose how they are treated for their disabilities or illnesses. It calls on health professionals to provide care on the basis of ‘free and informed consent’ – the person must be informed about the treatment, made to understand its consequences, and then their consent should be sought.
A cursory glance at India’s latest mental health legislation, The Mental Healthcare Act 2017, would lead you to believe that the Indian state has finally, in line with the UNCRPD, recognised the right of a mentally ill person to determine their course of treatment. But as Amba Salelkar explains, while the law does state that no person shall be given treatment without informed consent, there is a backdoor via Section 4 of the Act – a mental health professional may determine whether a person has the capacity to make mental healthcare and treatment decisions.
The section, effectively, undercuts the right to informed consent. This is, however, not very surprising for those who know Indian psychiatry.
“Informed consent is a distant dream, people are just grabbed and brought,” fumes Dr. Bhargavi Davar, director of Pune-based Bapu Trust.
Stripping rights away
Fifty-year-old Pramila Tai was diagnosed with schizophrenia 15 years ago, as the symptoms started appearing just after her wedding. She has self-inflicted burn injuries and also has mildly violent tendencies, according to social workers who help her. Almost every year, she is sent to the Regional Mental Hospital in Yerwada in Pune, and it’s not always because she needs it; sometimes her family doesn’t want her to be around.
In September last year, there was a ‘jagran’ – a religious ceremony - near her house, and Pramila Tai felt like dancing amidst the music and display of devotion. “She says she was fine, nothing happened. She just wanted to dance so she did. But her neighbours complained to her family, and the next day she was taken to the mental hospital,” says Almas Asif Momin, her counsellor. Pramila Tai was dragged across the streets against her will, and was left at the hospital for a few months.
Pramila Tai, at 'Pehel'.
Pramila doesn’t like talking about the night of the jagran, but makes it clear that she does not want to go to the mental hospital – and she does not think it is right to take her there without her consent.
“I don’t like being taken to the mental hospital. I don’t get sleep there,” she says, opening up. “I think they should ask me and only then take me, but they don’t ask me. I tell my doctors and family not to admit me, but they don’t listen. The doctors don’t listen to me, they listen only to my bhaiya," she says.
“Her brother is a nice caregiver,” Almas chips in, “he takes care of her. He is not a bad person. But he doesn’t understand that she cannot be forced to stay at the mental hospital.”
It is not easy for Pramila at the mental hospital, and it could even worsen her mental state. “She sees other mental health patients there and gets scared. She asks us, ‘I am fine, so why am I being sent there?’" Almas says.
When Pramila returns from her stint at the mental hospital, she also brings along skin allergies and unkempt hair, which makes her feel worse about herself.
“Do you get better when you go to the hospital?” I ask. She nods hesitatingly, looks to others for an answer.
“Yes or no?” I persist.
“I don’t like it there. My brother sends me there, says I eat medicines there and that I work there, so I go. But I don’t like it.”
This isn’t the case with just poor women like Pramila Tai, who have little or no agency in their lives.
Vikas* from Chennai, who suffers from schizophrenia and was under high dose of medication for more than three years, says that he was never informed about what his condition was, what medication he was being given and what its side effects were. He knows about his illness today because he took the effort to learn and ask questions.
“I don’t remember even talking to my doctors about what happened. I could have spoken, but I was not given the comfort level to talk about it,” he recalls, talking about his first consultation after a psychotic episode.
"When was the first time someone sat you down and gave you information?" I ask.
“I don’t think anyone has ever told me properly. I got self-educated, all by myself. Doctors would just suggest things online, but I would have to go and learn myself," he says. “I don’t think anyone has sat me down and explained to me clearly about my illness. All the information I have is what I learned, and then I asked my doctors and they told me a few things. My parents also never asked the doctors to explain it to me.”
When was he informed about the side-effects of the drugs? (Vikas was on a heavy cocktail of drugs)
“I realised it myself. I was never told – I brought it up myself because I was being restless and felt changes in my body. I could have been made to understand about many things, but I wasn’t. I wasn’t told about it. I have not had more than 15-30 minutes conversation with any of my doctors so far," he says.
Indian psychiatrists have openly called for the use of ‘covert medication’, the practice of hiding medication in food or beverages if the person has not given informed consent.
Dr. AK Kala, a member of Mental Health Policy Group constituted by Ministry of Health and Family Welfare and Chair-person of “Task-Force On Mental Health Legislation” of the Indian Psychiatric Society, wrote - “The Indian Psychiatric Society should accept the fact that because of ground realities, covert medication is used fairly commonly and should lay down the situations where it can be used and should prescribe safe guards, when it has to be used. Owning up the practice, discussing it openly in academic sessions, publishing research about the practice and regulating the practice is the only way to get out of the current atmosphere of denial and shared silence. This would also curb its misuse.”
To put it simply – we do it anyway, so let’s formalise it.
There have also been bizarre justifications, like this one by Dr. Nirmala Srinivasan, who writes about covert medication, “Gandhiji has always maintained that Ends do not justify the Means. I agree with him on all issues except coping with mental illness in the family. We cannot let our beloved kith and kin languish. Gandhi did it for his wife and confessed it too. That is why he is a Mahatma. I am not Gandhi; and I do not pretend to be one. But perhaps I must be applauded for bravely disclosing to my son that for 1 year he was a victim of surreptitious treatment and surreptitious prescription.”
There have been saner voices in India psychiatry, but the belief that sometimes patients simply cannot be given a choice exists.
“There are two things – one is which state the person is in, and the other is the insights the person has,” says Chennai-based psychiatrist Dr. Hema Tharoor.
“I think informed and shared decision-making should be done in an ideal world. But depending on the state, for example in schizophrenia, depending on the medical condition the patient was first seen, we take decisions. Majority of the patients lack insight, and say ‘I don’t have a problem so I won’t take medicines’, so by and large the issue of medication is discussed with families or the primary caregiver. But that is in the initial stage. We try and take shared decisions later,” she says.
That, however, doesn’t explain why many – like Vikas – aren’t informed or allowed to give consent for several years.
Psychiatrists often argue that some are not in the condition to give consent. What if they are amidst a manic or psychotic episode?
“There are real problems. I had a patient who, in her manic phase, just handed out documents of property worth Rs. 8 crore to someone. Her mother was asking me, what to do. We have to recognise the mother’s problem. Just as activist say that the patient has the right, we have to ask if the right is being exercised with cognizance of the implications,” points out Dr. Thara Srinivasan of SCARF, Chennai.
So, should such people not be given medication without consent?
“No,” says Dr. Bhargavi, “There is nothing so frantic about having an episode that you have to jump in with medication, most of the time it is not an emergency. Every episode has a beginning, a middle and an end, and there is an end for sure. Those are the ‘lucid intervals’. There you need to step in and explain to the person. A lot of other things can be done to prevent the person from doing any harm, medication is not necessary.”
But what if the person simply refuses to take medication, even during lucid intervals?
“I would negotiate. See that’s what don’t want to do – because it’s not as easy as just medicating a person. We are very bad negotiators. Informed consent is about caring enough to wait,” Dr. Bhargavi says, “Informed consent is a waiting period, it cannot happen immediately.”
The way forward, however, is not to expect doctors to change overnight – or that anything would change just because doctors change their minds. Research has shown that coercive treatments are often the result of a lack of resources, so we need a shift from medical policy to social policy.
“I don’t like any doctor, because I am tired of listening to them and they don’t listen to me. My life went away in just listening to others, I could not take care of myself in any way. I could not run my life and my mind,” laments 40-year-old Kamal Sonawane, who suffers from schizophrenia. She had an alcoholic, abusive husband who is now dead. She gave birth to three sons and a daughter, two sons died of alcohol addiction. She has severe body-image issues.
Kamal and Ratna, at 'Dwi'
Kamal and social worker Reshma (on the left)
She has been under medication, and that has kept her illness under control – but what has made her feel better, is the alternative therapy at Bapu Trust’s Wellness Centre. After speaking to me about herself, she asks for some art therapy - rangoli. She sits down along with social workers Reshma and Ratna, and gets busy applying the coloured powder on the floor.
Every person we have met for this story says they benefited from the medicines, but what really helped – if at all anything did – was psychosocial intervention.
For Vikas, it is a clean diet, counselling, better relationships and yoga which have helped.
For Pramila Tai, group therapy and keeping herself busy with some minor work have helped.
Bapu Baliram More talks about how tricks like ‘SDRD’ – Stop Drop Relax Distract – which he learnt from Dr. Ulhas Luktuke in Pune – a famed mental health professional – helped him overcome his psychotic phases or emotional breakdowns. He also likes to play drums and relax his mind.
Even the WHO agrees that psychosocial interventions are important.
“WHO’s advice for treatment is that pharmacotherapy – that is the drugs – and psychotherapy are equally effective. Our advice is that the treating person should decide based on several factors as to what should be the first line of treatment, in some cases both may be necessary. The problem with many countries, including India, is that there is a dearth of trained professionals to provide psychosocial care. Even psychiatrists in India are not adequately trained to provide psychotherapy, although they feel quite competent to prescribe drugs. Doctors feel that giving out prescriptions takes less time than psychotherapy and people’s time is precious,” says Dr Shekar Saxena of the WHO.
Which is why, the Bapu Trust has developed an 8-point program to improve the lives of the mentally ill, which they say is rooted in the UNCRPD. Kavita Nair, Project Leader at the Trust, explains that the programme consists of 8 distinct aspects of treatment – group therapy, dealing with stigma, individual counselling, developing family support, nutrition, teaching self-care, enabling livelihood and full healthcare.
“This was born out of the realisations we had when we sat up one day and asked, why aren’t people moving out of our system even if they are getting better? We realised that there is a diversity of needs for people with mental illnesses. So, we opened up more services and it is based on the inclusion model. We kept asking the person how we can include the person into society, and how we can empower the person,” says Kavita.
Dharmendra Padalkar, Project Coordinator, says the process through which they roll out the programme for each patient is long and requires patience. “We first assess them, with a questionnaire, and see if they are high-need or support-need. We decide what to do based on the assessment.”
Dharmendra says they make regular house visits to follow up on treatment and enable them to get better using resources available to them.
Both Dharmendra and Kavita agree that working in low-income settings has taught them that those settings are comparatively better for people with mental illnesses. “The stigma is low, and the way the communities are – the homes are closer, shared walls – support is easier to get,” Kavita says.
Most psychiatrists would agree that such psychosocial interventions are important. “We do recognise the importance of behaviour therapy, cognitive therapy and family therapy – but where are the trained professionals to deliver all these services? Even today I have to think hard to suggest people for behaviour therapy,” says Dr. Thara Srinivasan of SCARF in Chennai.
It’s for this capacity building that the Bapu Trust in Pune has partnered with the Pune Municipal Corporation and has got the approval to open 5 wellness centres across the city, near low-income areas, where the community-based model of holistic therapy can be practiced. “It’s a shift in perspective, and it is as close to the government as we can get, so we have hope,” Bhargavi says.
For Vikas, hope is the foundation of his new life. “I have a new outlook at life. I am going with the stride and making it work the way it comes. I don’t want another episode though, so I want to be on medication and listen to my parents and doctors – but I also want my freedom.”