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Thursday, March 10, 2011

A will to not live as a vegetable, DNA 10th march 2011

A Will to not live as a vegetable
Published: Thursday, Mar 10, 2011, 0:16 IST
By Kareena Gianani | Place: Mumbai | Agency: DNA

With the Supreme Court setting out guidelines for passive euthanasia in its judgment in the Aruna Shanbaug case, the doors have opened for the Living Will — a legal mechanism through which individuals can set down in advance the conditions in which they would like life support to be withdrawn.

According to Dr Surendra Dhelia, joint secretary of the Society for Right to Die with Dignity, thanks to the Aruna Shanbuag judgment, the Living Will, or what in the US is also known as the Advanced Health Care Directive, may now find popular acceptance. “Wouldn’t you want to decide your quality of life, whether life-extending treatments are worth the pain they cause? A Living Will empowers a patient when he is incapacitated. I believe it will find many takers.”

A Living Will is a document which specifies future circumstances of severe ill health when all remedial measures are futile, and when the individual prefers not to prolong life with life support systems and medicine. The Will specifies a request to the doctor in the future to enable an easier and quicker passage to death. A Living Will can be executed by an adult in full possession of his decision-making capacity, and without coercion.

An individual may, for instance, specify that he be allowed to die if his heart and/or brain stem stop functioning, or when there is any irremediable disease which renders him/her incapable of a useful existence. An individual can also specify the number of days in coma until all life support systems may be withdrawn.

A Living Will can be as specific as a patient wishes it to be.

“Aruna Shanbuag’s case reached the point it did because the main issue was activist Pinki Virani’s locus standi — the key question being whether her word could be considered in deciding if Shanbaug must live. But if Shanbug had made a Living Will in which she had stated just when and how she should die, the case would not have existed at all,” explains Dr Dhelia.

The SC judgement has laid out some parameters for deciding whether the patient is “eligible” for passive euthanasia. In case of a disagreement between the patient’s relatives and a doctor on how — and whether — a patient’s treatment must continue, the matter will be decided by the concerned high court which will set up a panel of doctors to examine the patient’s condition.

In this changed scenario, many doctors and lawyers believe that a Living Will can ensure that the patient’s wishes are taken into consideration when deciding about passive euthanasia. Justice Vallabh Mohta, senior advocate, Supreme Court, says that the Living Will did not find much traction till now because the Law Commission in 2006 opined that the idea was illogical, too far-fetched and had high chances of manipulation.

In fact, the judge feels that chances of manipulation are lesser when there is a Living Will. “If a person, say, with a malignant tumour refuses treatment, he is not booked for attempt to suicide. A Living Will means the same thing. Actually there is dire need for it - it enables you to respect a patient’s wishes even after he is incapable of expression. There are loopholes to every existing law. But the chances of manipulation in a Living Will are not very high. It can be changed as many times, as per the individual’s wishes, and can also be declared void by him at any point,” explains Justice Mohta.

One may argue that a person making a Living Will cannot possibly specify every single detail of the complication if s/he were to fall ill in the future. Preparing a durable power of attorney takes care of that loophole, too, adds Justice Mohta. “In a durable power of attorney, you can specify that only a particular family member may decide the course of treatment, or choose death, in your interest.”

How they die elsewhere
- In the US, most states recognise Living Wills or the designation of a health care proxy - where someone is appointed by the individual to make decisions on their behalf when they are incapacitated.

- In England and Wales too, people may make a Living Will or appoint a proxy. Last year, a study showed demand for Living Wills had trebled in the two previous years, indicating the increasing number of people concerned about the way in which their terminal illness will be managed.

- In the Netherlands, patients and potential patients can specify the circumstances under which they would want euthanasia for themselves. They do this by providing a written euthanasia directive.

- In 2007, Living Wills found acceptance in Thailand’s Health Act. An individual can decide in advance what medical care and treatment she must receive if she ever becomes unable to specify those wishes herself.

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* The hits and misses of the Aruna Shanbaug verdict
* Aruna Shanbaug's brother wishes her a quick death
* Karibasamma sees hope in Supreme Court verdict on Euthanasia
* Aruna Shanbaug’s care-givers at KEM hospital celebrate apex court’s lease of life
* Nod for passive euthanasia relieves doctors

Bihar couple seeks Mercy killing for sons

Bihar parents seek mercy killing for two sons

Indo-Asian News Service, Updated: March 09, 2011 18:42 IST
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Muzaffarpur: Asha Devi is aware of the cruel irony. "Mothers seek long lives for their children, but here I am seeking death for my two sons," she says, slumped beside Nitin, 15, and Anshu, 13, who suffer from muscular dystrophy.

The rare muscular disorder is characterised by the death of muscle cells and tissue, and reduces its victims to skeleton-like shapes, with curved spines, progressive loss of body muscle and respiratory difficulties.

Nitin and Anshu cannot talk or stand on their feet. They are also paralysed below their chests and are unable to eat or move without assistance.

Asha says her sons were born healthy, but gradually started developing the condition when they were about two years old.

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There is no cure for muscular dystrophy. Some advances have been made, but treatment is available only in the US, and costs anywhere upwards of Rs. 30 lakh (Rs. 3 million/about 60,000 USD).

The boys' father, Mukesh Kumar, speaks of this sum with an expression of helplessness.

A poor farmer in Ratwada village of Muzaffarpur district, some 70 km from Bihar capital Patna, he also runs a small shop to supplement his income, and manages to earn Rs.3,500-4,000 a month.

The sum is simply beyond his reach. That's why, he said, "I have asked the state government to grant permission for my boys' mercy killing".

The plea comes at a time when the Aruna Shanbaug case is in the spotlight, with the Supreme Court rejecting mercy killing but giving support to the possibility of passive euthanasia for the nurse who has been in coma for 37 years.

"We have been pleading for their mercy killing because we cannot continue costly medical treatment, which anyway will not cure them, only prolong their unhappy lives. The state government should either grant permission or provide us help for treatment," he said.

"We cannot see our sons' pain and helplessness any more. Both are in utter discomfort," he said.

For Asha Devi, her children's condition is too much to bear.

"I cannot tolerate such a painful life for them. It is for the government to decide whether to grant permission for mercy killing or help us with their treatment," she said, her voice choking.

Mukesh said he sold off his little piece of land and the meagre valuables he had for his sons' medicines.

"There is no temple or mosque here that I haven't visited to pray for my children. I've gone to Delhi, Lucknow and Kolkata for their treatment, and tried everything from allopathy to ayurveda. I've done everything I could," he said.

"We are completely destitute now, struggling for survival. How can we manage money for their treatment?"

Meanwhile, Tirhut range Divisional Commissioner S.M. Raju has assured all help to the couple. "After I was informed about them, I invited them to meet me. I will ensure every possible help to them," he said.

Asha said last year they tried to meet Chief Minister Nitish Kumar at his popular 'janta darbar' in Patna but were not allowed inside by security officers.

"I see their distress every day. Either they should be provided proper medical treatment or they should die," the mother said.

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