he late Dr. Carl Sagan, David Duncan Professor of Astronomy and Space Sciences and Director of the Laboratory for Planetary Studies at Cornell University, once said: “Our technology has become so powerful that not only consciously, but also inadvertently, we are becoming a danger to ourselves.?/font>
In contrast, Dr. R.A. Mashelkar, Director-General, Council for Scientific and Industrial Research, said recently at the annual conference on “Competing in Challenging Times? “India needs a grey revolution, a revolution of the minds. A revolution of this kind would create new minds and mindsets making change and technology acceptable to the people.?/font>
There is truth in both points of view. But the question that arises is to what extent should human beings accept and adapt to technology, especially when it comes to health care? The Indian Express dated 23 March, 2002 reported: “Paralysed British woman finally wins her right to die.?A year earlier the woman was paralysed from the neck down. She was unable to breathe unaided and was kept alive on a life-support machine by doctors who found it unethical to switch off the machine needed to keep her alive. High Court Judge Dame Elizabeth Butler-Sloss, in one of Britain’s most emotive court cases, apart from praising the woman for her “great courage, strength of will and determination? passed a historic ruling: “Administration of ventilation by artificial means against the claimant’s wishes since August 8, 2001, has been an unlawful trespass.?She added that the woman was “entitled to appropriate treatment, including pain-relieving drugs and palliative care to ease her suffering and permit her life to end peacefully and with dignity.?/font>
Where does technology, particularly medical technology, leave us then? Is it a boon or a bane? This is something we all need to ponder upon. It is important to guard against the irrational use of modern medical technology in the facile belief that life must be preserved at any cost, which often leads to the most distressing outcome of seeing a human being attached to a machine which keeps him or her breathing, giving a façade of life where there is none! It is high time we learn not only to civilise life and living, but also to civilise death and dying.
Most rational people know that death is inevitable. But what we fear is not death, but the process of dying. As the 20th century novelist, political activist and social philosopher, the late Arthur Koestler, wrote in an essay titled Right to Die: “The whole concept of death as a condition would be more acceptable if dying would be less horrendous and squalid.?Koestler, a terminally-ill patient, had committed suicide a year after publishing his reasons to do so.
Even in educated societies people feel that they have no moral right to make a decision to end suffering for another individual, however close he or she may be to us. I myself was a mute spectator, helplessly watching my aunt die of mouth cancer. Her condition was worsening by the day, leaving her weak and in agony. Towards the end of her life, the once smart and attractive woman had a disfigured face, slurred speech and literally waited for death. I couldn’t understand a word she said, but knew that she loved me a lot. All I could do was come out of the hospital, cry and pray to God to relieve her from this miserable life (or death!).
In our country there is no explicit or implicit law governing voluntary euthanasia. Under Section 309 of the Indian Penal Code, an attempt to terminate one’s life would be subject to the law governing suicide and those “helping and abetting?would be punishable too. What is important is that the law should give immunity to physicians, paramedical personnel, family and institutions from civil and criminal procedures for the performance of voluntary euthanasia. It should provide for medical assistance to terminate life under specific circumstances and clearly define the criteria for voluntary euthanasia. Also, documents such as the Living Will and Durable Power of Attorney should be given legal sanctity.
The Living Will (also referred to as the Advanced Health Directive) was introduced by attorney Louis Kutner in 1969. It is a seminal contribution to the concept of voluntary euthanasia. It is a document which specifies existing or future circumstances of severe ill health when all further remediable measures are futile, when you would prefer not to have the process of dying unduly prolonged with a directive to withdraw or withhold all life supports and medications and request the physician to aid towards an easier and quicker passage to death. It is an expression of one’s right to choose refusal of any treatment offered under the circumstances.
Take the case of Gold Coast grandmother Nancy Crick, a bowel cancer sufferer, who weighed a mere 27 kilograms and spent her days and nights either vomiting or leaning over the toilet bowl. Although it is not clear whether she had made a Living Will, she has documented her illness on the Internet* and appealed in Brisbane for a drug that would kill her painlessly. Depressed and tired of living, she asked the world: “Would you like to have me in your car? ?Imagine if you had to wake up in a wet bed covered in your faeces, it’s not dignified, comfortable nor compatible with a relaxed start to a new day ?This type of future would not be visited on a pet or farm animal. Compassionate vets will not let this happen, they gently euthanise our animals. Why then is it so unreasonable to expect compassionate doctors to do the same for human beings??/font>
On 22 May, 2002 Nancy kissed all her 21 supporters before calmly heading to her room, getting into bed and committing suicide by drinking a lethal cocktail of barbiturates. Her decision to end her life was based entirely on her intolerable suffering, which was unrelievable, and not because she had cancer.
In many countries abroad, the issues pertaining to the concept of dying with dignity have crossed the frontier from conceptual debates to methods of implementation. In fact the need for an organised basis was felt strongly and the first Society to Die with Dignity was formed in England way back in 1935 by none other than intellectual giants George Bernard Shaw and H.G. Wells. Later, in 1938, Rev. Charles Potter, a Christian theologist, formed a society in New York, U.S.A. Australia, Japan and other countries in Europe followed suit, subscribing to the theme of an individual’s “Right to Die with Dignity? The movement gathered pace with the founding approximately 25 years ago of the World Federation of Societies for Right to Die, which has a membership of 35 societies from 20 countries, representing more than 5 million people.
India, sadly, lags behind, despite ever-increasing awareness, and even acceptance of the concepts. In May 1981, the late Minoo Masani founded the Society for the Right to Die with Dignity. A multifaceted man ?politician, author, barrister, publicist and one of the most eloquent parliamentarians of his generation ?Masani was also active in the World Federation of Societies for Right to Die and was its President from 1984 to 1986. In the evening of his life, he became a passionate advocate of euthanasia and campaigned for a change in the Indian laws. He founded this Society with the following aims and objectives in mind:
l To assert the right of every man and woman, in full possession of his or her decision-making capacity, the freedom and autonomy within the limits that may be laid down by law, to choose to live or die.
l To strive for legal recognition of an “Advanced Directive?(the Living Will) executed by an individual in full possession of his or her decision-making capacity, without any duress, enunciating the conditions of ill health in which he or she does not wish to prolong life by artificial life support or treatment.
l To enable persons who are terminally ill and who are not in a position to think or speak for themselves, to make it possible for persons duly authorised by them to arrange for termination of life of such persons, after confirming that such persons had earlier made an appropriate Advanced Directive Declaration when they were in full possession of their decision-making capacity, giving the authority to persons mentioned above.
l To create public awareness and opinion in favour of the aims and objectives.
l To work for suitable amendment of the law to implement such aims and objectives.
After Masani’s death, the reins of the Society were passed on to the late Dr. B.N. Colabawalla. What is the philosophy on which Colabawalla based his commitment to the cause? Remembering Prof. Gerald Hughes, retired Principal of Cleveland Public Schools, he said: “Gerald Hughes rightly states that ‘the ability to choose one way or another given all the beliefs and desires we have at that moment, is surely integral to our concept of what it is to be morally responsible!?Given that I therefore subscribe to Isaac Singer’s statement when he says, ‘we have to believe in free will, we’ve got no choice.’”
This brings to mind the movie Born Free, starring Virginia McKenna and her husband, the late Bill Travers, portraying the work of world-renowned conservationists Joy and George Adamson with Elsa, an orphaned lioness, whom they raised as a young cub and later successfully released into the wild. Joy Adamson realised that every living being is born free and it would be better for Elsa to either live in the wild or die in the wild, free and with dignity rather than live the rest of her life in a cage in some public zoo. The emphasis here was on “dignity? even at the cost of Elsa’s life! Imagine a terminally-ill human being caged in a hospital or institution dying of some incurable disease!
The Society for the Right to Die with Dignity comprises approximately 300 members with Prof. Sadanand Varde (former Minister of Education, Janata Party) as its Chairman and Dr. Nagraj Huilgol (Chief Oncologist, Nanavati Hospital) as its Secretary. It plans to organise meetings between noted lawyers and doctors on the question of how to regularise the Living Will. It also plans to hold a public meeting and make more people aware that such a Society exists. Besides, it also wishes to ward off notions of Indians who think that it is a “sin?to take away a life from earth ?as good as murder ?which is against any religious faith. They forget that most religions teach one thing, that death is an illusion. It is the Soul that is immortal and does not die with death. The body is nothing but a shell of the Soul, which disintegrates with time and is ultimately left behind.
It is more important to live life to the fullest than to be kept alive or merely exist. Therefore, it is important to concentrate on the process of dying rather than death itself to avoid a painful and agonising death. One must also take into account the pain caused to family members and friends, particularly in the lower and economically deprived sectors. In such sectors, usually, the terminally-ill patient is abandoned in a hospital or an institution to die. Often, the relatives, after a while, do not even care to visit them, as they cannot sustain the mental agony and, more significantly, the financial burden, any further.
Things could get worse since doctors are bound by the Hippocratic Oath. They may feel sorry for the suffering patient, but cannot administer or even suggest any deadly drug to let the patient die in peace. In a keynote address on “The March of Medicine?delivered at the Indian Merchants Chamber, Dr. Farokh Udwadia concluded: “As long as medicine continues to combine science and art with human values such as care, concern and compassion, there is hope that it will continue to evolve in the services of mankind.?/b> But should that compassion go to the extent of crossing professional ethics, of breaking the Hippocratic Oath? That needs to be debated by the medical fraternity. Not just doctors, even family members need to be compassionate. Very often, in spite of seeing their near and dear ones suffer, they push the doctors to the limit to keep the patient alive for they “love?the patient very much. I often wonder, is it love or love with a touch of self-interest?
Why do we as honourable human beings presume that we have no control over the process of dying? Why don’t we realise that we live today in an era where freedom of choice is valued by each and every one of us? Any society which embraces democracy, liberal values and secular social justice, bestows upon the individual the freedom to choose the very many facets of life. So doesn’t that include health care? While we may have no legal right to die, we certainly have the freedom to choose how we wish to live and how we wish to depart from life, because we possess the dignity of being a human being. What would you choose ?a life of suffering and indignity or dying with dignity? Do let us have your views.