Self Help

My Care, My Way

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The Mental Health Care Bill, 2013, currently pending in Parliament, puts the patient in charge of his future care. Is that wise?
As a surgeon I’ve supp’d full of horrors, but I had the air knocked out of me last week.

A woman I knew slightly called me, worried about her daughter. She was an acquaintance, not a patient, and it took her a while to disgorge the story. She was worried that her daughter was unhappy, and she couldn’t think of any possible reason.

‘Can I meet her?’ I asked.

‘You’ll have to come home. Sarita doesn’t go out much.’

I didn’t know that was the literal truth till I got there.

Sarita hadn’t left the house in fifteen years.

She had just turned thirty.

‘We’ve done everything for her, AC, carpet, everything, but it doesn’t seem to be enough,’ her mother sighed outside the barricaded room where Sarita spent her life. ‘She was in tenth standard when the doctor said she had schizophrenia. What else could we do?’

The pity was that Sarita saw psychiatrists, off and on, but her protective family felt this life was the best for her.

‘We have to think of the family,’ Sarita’s mother said.

***

Ironically, I had started the day by reading the new Mental Health Care Bill introduced in the Rajya Sabha in August 2013 and currently pending in Parliament. It contains an interesting clause: the Advance Directive that empowers a patient to decide on therapies. I read it with relief and approval, ignoring the rest of the document. There were other issues, but only this engaged me. I thought about it all day. Now, as I watched Sarita’s mother lock her door again, the ‘advance directive’ seemed as flimsy as the paper it was printed on.

Who would explain this reality to me?

Pag ghungroo baandh Meera naachi re! / Log kahen Meera bhayi bawaree ? Nyat kahe kul naasi re! / Meera ke prabhu giridhar nagar ? Hari charanan ki daasi re!

Meera sang that plaint in the 16th century. Five hundred years later, it sums up the tripartite dilemma of mental illness today.

Whose reality must we respect? Meera’s? Or her family’s? Or that of society?

Meera is a different person in each reality. To society, she is an oddity and a nuisance. To her family, she is an embarrassment.

But to Meera, she’s just herself.

Anybody who ‘treats’ Meera has to address all three realities.

If only her reality mattered, she wouldn’t need a psychiatrist at all. But she would remain the target of her family’s wrath and the crowd’s ridicule. And, in the 16th century that is exactly what Meera did. She stayed true to her own reality, and endured the rest.

Posterity would eulogise her as a mystic and a saint.

***

What would Meera do today?

She would probably see a psychiatrist called in by her family. Whose reality should he address? It won’t do to let her be. He must protect her from her family’s ire and the crowd’s derision, even if he does not wish to engage with her reality.

He tries his best to strike a balance between the three. The result, often, is very much like Sarita’s story. In the 16th century, Meera was lucky. Even if she hadn’t been of exalted birth, she would have been endured. Her father may have evicted her from his house, but the crowd would have left her unmolested. A vaid or hakim might have ventured a potion or two. A pujari or faqir might have attempted to exorcise her. That’s about it. Medieval India hadn’t yet woken up to the European treatment of insanity.

Both Indian systems of medicine, which in the 16th century were complementary, had more compassionate measures of care for the disturbed mind. The dungeon, with ball, chain, shackles was meant for criminals, and insanity was never regarded a crime.

But in Europe, lunacy was not endured. It had to be cured or suppressed.

The history of mental health in Western medicine is curiously repetitive. The interludes of enquiry have been mostly philosophical excursions. For the rest, it is all coercion and restraint.

Even as the submerged mind was being explored by Freud and his pupils, the asylums in Europe and America began exploring the brain as the seat of insanity.

Three years ago, confronted with Hieronymus Bosch’s masterpiece The Cure of Folly at the Prado, I found it hard to believe it had been painted in 1480. It was so absolutely early 20th century. The neurosurgeon, so assured and intent in ‘extracting the stone of madness’ could have been António Egas Moniz lobotomising one of his early patients.

It had come to that: cut out the brain and madness could be controlled, if not cured.

Then, mid-century, chemistry took over.

The moon was officially exonerated. Lunacy was chemical. Sanity was now a molecule.

Since the introduction of the first antipsychotic drugs in the 1950s, psychiatry has undergone a paradigm shift.

Madness is no longer the focus. Coping with it is.

Ask most patients and they’ll tell you the shackles, the ball and chain, the dungeon—they’re all alive and present in that new strip of pills.

A psychiatrist who agreed with them was Thomas Stephen Szasz. He considered the right to selfhood central to any treatment of mental illness. He dismissed psychiatry as a conspiracy with the State to control and homogenise human behaviour. His fascinating work had one consequence that might change Meera’s life today.

The Advance Directive in the new Mental Health Bill introduces Szasz’s idea as necessary protection for Meera’s selfhood. To understand how that works, we have to go back three millennia.

***

Reality TV, in Greece 3,000 years ago, was a blind man twanging his lyre in the agora. You could be on your way home with a basket of figs when his song stopped you in midstride. You stayed, rooted to the cobbles, the figs wilting in the strong Ionian summer. You were still there when the sun went down, still there by firelight, and there still by starlight in the long silence after the song was done. You would carry that song in you for the rest of your life. You were meant to do that, because the song was more than the hero’s story. It was your life.

We’re still listening to that story.

In fact, this bit of the story is something we’re now compelled to scrutinise. The speaker is Ulysses, and you’ll find the story in Book 12 of Homer’s Odyssey.

Then, being much troubled in mind, I said to my men, ‘My friends, I will tell you about the prophecies, so that whether we live or die we may do so with our eyes open. First we are to keep clear of the Sirens, who sing most beautifully; I might hear them myself so long as no one else did. Therefore, take me and bind me to the crosspiece half way up the mast; bind me as I stand upright, with a bond so fast that I cannot possibly break away. If I beg and pray you to set me free, then bind me more tightly still.

When we reached the island of the two Sirens, I stopped the ears of all my men, and they bound me hands and feet to the mast; but they went on rowing themselves. The Sirens began with their singing.

I longed to hear them further. I made by frowning to my men that they should set me free; but they quickened their stroke, bound me with still stronger bonds till we had got out of hearing of the Sirens’ voices. Then my men took the wax from their ears and unbound me.

It is worthwhile reading that quote before considering the new Mental Health Care Bill, soon to be passed by Parliament.

***

In this proposed amendment to the standing statute, the Mental Health Act of 1987, the central thought, the Advance Directive, is meant to protect Meera. It puts her in the place of Ulysses. She has been informed of her ‘condition’. The exact diagnosis is irrelevant, but she is mentally ill.

Next, like Ulysses, she receives the prophecy: there will come a time when the illness gets the better of her, and robs her of free will.

Therefore, like Ulysses, Meera is offered the opportunity now, while she is still strong of will, to decide on what she would like to do in that eventuality.

Ulysses’ prophetess was Circe, a sorceress expert in magical potions and therapies. Circe was, in fact, just as qualified as Meera’s psychiatrists. Ulysses took Circe’s advice. It was an informed choice. He had seen Circe’s drugs turn his men into swine, but he had protected himself with an antidote. Besides, he had known Circe for a year.

Meera might be less trusting. Her psychiatrist may tell her the therapies needed if her disease worsens are safe, but she might disagree. She might consider such therapies unsafe or even wrong. She may object to them on the basis that they might distort her sense of self. ‘That’s not me’ is a complete rejection, even when it is based on perception and not experience. So Meera may reject such therapies, and say that she will not want them used on her in any eventuality. If and when the disease has robbed her of free will, this decision of Meera will hold.

Conversely, Meera might feel safer with the thought of those therapies awaiting her. She could say that if her disease worsens, she wants these used on her. If and when the disease has robbed her of free will, this decision of Meera will hold.

The new Mental Health Care Bill gives the patient the right to state this ‘advance directive,’ called, in psychiatric parlance, the Ulysses contract.

It is meant, as I said earlier, to protect Meera.

But will it?

***

The very idea has thrown up a flurry of protest from psychiatrists. They argue that it is premature and jejune. Their arguments are based on the practical realities of treating the mentally ill. These arguments are also influenced by indignation that the State should intervene between the patient and her doctor, as if she needed protection from her doctor, rather than from her disease.

Perhaps, the fear is that such legislation presumes that psychiatry ignores the first Hippocratic rule all physicians swear by: Do no harm.

How valid are their arguments? Is their indignation justified? Does the law really put doctor and patient on opposite sides of the fence?

Before we consider that, here’s another question that’s moot: Is Meera’s situation comparable with that of Ulysses?

Yes, both of them know of a possible danger. Both have been offered a solution.

Ulysses had no other solution at hand. But has Meera? Not just at the present moment, but will she have options, say, ten or twenty years into the future?

Again, Ulysses’ directive to his men was for one crisis. He did not expect to go through that repeatedly, and with increasing terror and danger.

What about Meera?

She may have a mental illness that emerges periodically. There are some illnesses that pop up at intervals. Others manifest when the patient forgets to take her usual medication, or as is common in our country, decides to skip it to cut costs. The cascade of events might be foreseeable, and Meera may have full knowledge of its escalation.

Will that knowledge be cruel on Meera? Will it panic her into a decision she might not otherwise consider?

There is a lot of difference between knowledge and experience when it comes to suffering. That difference can be a manipulative tool. It is, after all, the core principle of torture. Disease, and the knowledge of advancing disease, is deeply coercive. Any decision made in the midst of suffering, or the dread of suffering, is one of expediency, not one of free will.

Also, Ulysses could rely on his men.

Whom can Meera rely on? Who will validate her wish?

Again, Ulysses’ decision was absolute. He did not ask his men for opinion or advice. His decision was also immediate, as the crisis was imminent.

Meera’s decisions can never be absolute. Whether she likes it or not, she is enmeshed in family and society, and therefore, she will have to consider their opinions and their advice. Her decision then will depend on how such advice conflicts with her own opinions and desires. It is a tough call to make.

And, what the hell, Ulysses was just a guy in a myth. But Meera? She might be me.

***

If you return to Homer’s epic, you’ll notice a simple human need: …so that whether we live or die, we might do so with our eyes open.

To me this is the most poignant clause, the soul cry of suffering—show me the truth.

It is a plea no doctor can ignore, least of all Meera’s psychiatrist.

Rather than challenging the bond between patient and doctor, the Ulysses contract can be used by the intelligent psychiatrist to enhance communication.

But Ulysses also empowers his men to go against his wishes during the crisis.

How wise will it be for Meera to do that?

Ulysses was quickly rowed past those Sirens. Meera may have to live out her years bound to the mast hearing the Sirens sing, while her family rows on, deaf and oblivious, consoling themselves that they have carried out the wishes Meera made twenty years ago.

The Mental Health Bill has a safety net for all these doubts, but that’s just on paper. How will they translate in life?

What if Meera chose an advance directive to undergo Therapy A in case of deterioration? Say that takes 20 years to happen. By this time Therapy A is considered barbaric, and a Therapy B is available at a certain cost. But Meera’s caregivers cannot, or will not, bear that cost, and use the document she signed to impose Therapy A on her? Has the advance directive worked to Meera’s advantage?

The Bill has a provision that the directive can be over-turned if it is inimical to the patient’s well-being. True, but that’s supposing someone wants to overturn it. Chronic illnesses generally follow the path of least resistance.

***

Remote decisions seldom relate to what a person may want in the actual crisis.

Meera may have decided against electro-convulsive therapy in her directive a year ago. In a crisis, her inner feeling might be: Any hell is better than this one. But she may not be in a position to verbalise that. If her directive is implemented, will it increase her suffering?

To ask someone what will you do when you’re in agony? is either plain stupid or pure rhetoric—which is usually the same thing.

The only honest answer possible is: I won’t know till I get there.

This answer is not necessarily valid in the other group of patients likely to be offered advance directives— patients who are terminally ill.

Such illnesses can have only one outcome, and the patient can anticipate her end-of-life desires in a ‘living will.’

But Meera is not terminally ill. She expects to live productively, and happily, past the crisis. She must not have to pay through all the coming years for a decision she made in the past. So the decision in the crisis must be one that ensures the best outcome, not just in terms of relief, but also in terms of selfhood and quality of life. And who’s the best judge of that?

Meera isn’t, not in a crisis.

Usually, it is the psychiatrist who makes the decision.

What if his decision is different from Meera’s?

To disempower the psychiatrist in a crisis is not in the patient’s interest at all.

And so the Bill has a proviso of committees and review boards and whatnot, but hello, this is a crisis! You can’t sit out a crisis in a committee.

‘Emergency,’ as noted in the Bill, to the best of my knowledge, relates to life-threatening episodes.

Here the emergency may not be a threat to life, but it is an episode of great suffering. And suffering is all about speed, it’s got to be stopped now.

We had a demonstration of how courts view medical crises in 2012 when the permission to terminate pregnancy was refused to a mother carrying an anencephalic foetus—a condition where the cerebral lobes and the cerebellum (with the overlying skull) fail to develop, making it incompatible with life.

Many psychiatric crises are, for want of a better descriptive, bloody awful. Patients who speak about it in the aftermath are often at a loss for words: they just don’t want to go through it ever again.

The mind, so hazy in its location, is all pervasive in anguish. Its suffering outstrips all bodily pain.

If the psychiatrist is disempowered to address that anguish, who else can?

The safety net of family and friends may be close enough to know Meera, but how informed are they about the therapy? Just as informed as the lawmakers. Good, but not good enough.

This leaves only one other option, to call in a new set of psychiatrists to review the old one. These worthies, mysteriously above suspicion, may be complete strangers to Meera and her life. How are they likely to act in her best interest?

***

Haven’t you ever looked back and wondered how you lived through some moments in your past? Haven’t you felt you couldn’t live through them again?

I do, frequently.

I know, for instance, I lack the madcap dare I had at twenty. I’m also cool about things that used to terrify me then. My decisions are informed differently now.

Ten years on, they’ll be different again.

And yet, my values and my dreams haven’t changed much since I was five. But what felt right at twenty feels simply ridiculous now. Why shouldn’t it, to Meera?

Will the new Mental Health Care Bill make Meera’s life easier? I don’t think so. It’s too superficial in its understanding of Meera’s tripartite dilemma. Meera needs empathy to keep her life going, she needs nurture and respect. That can only come to her from log and nyat: other people and her own. The Advance Directive doesn’t take this nurturing into account. Instead, it might become an instrument of alienation.

It could work as it is supposed to if we were like the West in two respects.

First, if our society were structured to support an individual existence. It is not: in India, family is identity. Second, if Meera could claim with dignity the basic human rights of food, income, shelter: for she may be denied all these by her family.

At present, even with the best of intentions, there is no way Meera can survive if she does not co-opt log and nyat.

If I wanted to give Meera a fair deal, I’d go about it in a very different way.

I would use the law to provide an infrastructure that offers her rights, freedom and safety. And that’s about it.

That security will be enough for her to seek out and nurture a support system of friends and relations who understand her. Such understanding can only come if the infrastructure provides for a closer communication between psychiatrists and families. This will engender awareness, and, one hopes, prevent rejection, ridicule and hate.

Science changes, therapies change. The only constant is compassion. Like trust, compassion cannot be enforced by the law.

***

Ishrat Syed and Kalpana Swaminathan are surgeons. They write together as Kalpish Ratna
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