Interview

Volume 3 Issue 3 - February 01, 2005

“Allowing euthanasia reinforces the often heard message that it's better to be dead than disabled�

The case of K. Venkatesh of Hyderabad who approached the court to let him die and donate his organs, had led to a debate on euthanasia. Anjali Sen Gupta speaks to Anita Ghai, Reader in the department of Psychology, Delhi University, and a disability activist on the issue of euthanasia from the perspective of disabled persons.

The case of the boy in Hyderabad, who wanted mercy killing so that he could donate his organs, brought the issue of euthanasia into the public domain. Does the law say anything regarding this?

That's right. However, because of his death, the ethical questions that should have arisen got sidelined. For instance, the media probably is not aware of conflict that it has generated in the minds of many disabled people, particularly to those who have muscular dystrophy.

While Section 309 of the Indian Penal Code says that attempted suicide is a criminal offence, it keeps mum on euthanasia. The irony is that it is the fear of misusing the law which is holding back many experts from legalising it. If euthanasia is made legal, there always will be those who will try to bend the law and exploit vulnerable disabled people.

We do have the “Transplantation of Human Organs Act, 1994,” which has stipulations for hospitals that can perform organ transplants. It defines a legal donor and nature of monitoring agencies in Authorization Committees and Appropriate Authorities. It also paves the way for cadaver donation in cases of brain-stem death and presumed consent and for strict penal provisions of imprisonment up to 7 years for offences under the Act. However the act is basically intended to control illegal transplant. It was under this act that K. Venkatesh approached the court to allow him to die so that he could donate his organs. He had muscular dystrophy. The court did not allow him to do so. “The law does not allow transplanting organs from a person who is still alive,” High Court judges Devender Gupta and Narayan Reddy said. In this sense, mercy killing is considered illegal in India. However, the actual debate did not quite see the light of the day, as he died very soon after the appeal was made.

There are countries such that have legalised euthanasia such as Netherlands and Belgium. Similarly, in Switzerland you come across a community called ‘suicide helpers’.

What is meant by ‘euthanasia’?

Like so many moral/ethical/religious terms, euthanasia has many meanings. Popularly known as ‘mercy killing’, the word euthanasia originated from the Greek language: eu means ‘good’ and thanatos means ‘death’. One meaning given to the word is “the intentional termination of life by another at the explicit request of the person who dies.” The term euthanasia normally implies that the act must be initiated by the person who wishes to commit suicide. However, some people define euthanasia to include both voluntary and involuntary termination of life. Voluntary active euthanasia involves an intervention requested by a competent individual that is administered to that person to cause death, for example, if a physician gives a lethal injection with the patient’s full informed consent. Involuntary or non-voluntary active euthanasia involves a physician engaging in an act to end a patient’s life without that patient’s full informed consent.

How does it impinge on the lives of disabled people?

Very often disability is equated with disease. Since euthanasia usually applies to either very sick people, or people with severe disabilities, allowing it implies that disabled people are of less value and have less worthwhile lives than the able-bodied. Such messages reinforce prejudice against disabled and the sick. The dangerous consequence is that people may argue that it is not necessary to provide proper care for such people. It is true that some diseases can be disabling, but for me disability is an expression of a power imbalance between a minority and majority. If we follow the international disability movement, the Latimer case is a pointer. Latimer murdered his daughter, Tracy obviously without consent. If we go by the right-to-die movement's tenets, Latimer has broken one of the most elementary safeguards in the euthanasia debate – consent. However, Latimer was openly supported by many of the right-to-die movement.

Taking a decision to kill somebody, even though it is a ‘mercy killing’, is a huge responsibility. Who is entitled to make such decisions – persons with disabilities or their guardians?

The entitlement would depend on the law. As per Article 21 of the Indian Constitution, “No person shall be deprived of his life or personal liberty except according to procedure established by law”. For instance, two men in Kerala asked the High Court for permission to voluntarily put an end to their lives. They said that their families were well-settled and they themselves had no desire to continue living, and they argued: “The freedom to choose the method of one's death is a part of the right to life.” The court did not agree.
What happens when a disabled person is in no condition to make such decisions? How do we screen out corrupt or greed-motivated intentions?

I have discussed the issue of consent earlier. It is very difficult, but if we are aware that certain practices have the potential of being misused, caution can be exercised. However, what needs to be understood is that sometimes people might feel compelled to take such decisions due to lack of resources or the support system. If the rights of the disabled people are to be protected, parents and caretakers need to be given the supports so that the resolve to say no to such suggestions can be strengthened. If there is property, there is a need then to evaluate the decision very carefully. The issue of euthanasia is very complicated and should not be taken lightly. It is very difficult for us to understand the reasons why any disabled person would wish to end his/her life. And consequently it is wrong for us to sit in judgement and say whether someone merits ending their life.

What is the current debate about euthanasia, so far as disabled people are concerned?

The current debate is between some people who feel that everyone has a right to live, and those who believe that those who are a burden on society should be eliminated and also that society should prevent ‘defective’ people from being born. Allowing euthanasia reinforces the often heard message that, “it's better to be dead than sick or disabled”. The underlying implication is that some lives are not worth living. What is worse is that such assumptions not only put disabled at risk, they also devalue their status as human beings while they are alive. What needs to be underscored is that life with a disability is not a disaster. The quality of life argument, which is often used against the disabled people, has to be interrogated. It stems out of an individual model of explaining disability without looking at the societal structures that are responsible for transforming impairment into disability.

What do ethics dictate?

There are many arguments that are used to defend/attack mercy killing. If the person is irrevocably ill, totally dependent, and goes through immense pain, it is argued that it is better to let him die in peace. It does not seem sensible to go through all that pain. If a person is in a coma and on continuous life supporting equipment, the life-supporting equipment can be detached, and the person can be ‘allowed’ to die. However, there is a clear difference in actual ‘killing’ and ‘allowing to die’. In the second case no one is actively taking life. The ethical argument in both cases revolves around the right to life which every human being, regardless of illness, disease or disability, should have. Moreover, all of us have to be protected from direct killing. If we do not do that, society will become a jungle. Within the Indian context, greedy relatives and collaborating doctors are fully capable of starting a profit enterprise thriving on ‘killing’.

Let me cite the case of Mark O'Brien, a quadriplegic who lives on an iron lung. He says in a Pro-Life webpage [www.rtl.org/html/faqs.html] that “it is usually the poor, elderly and disabled who are sacrificed to keep medical costs low”. He notes that Dr Jack Kevorkian, an American doctor who has assisted in the suicide of 41 people, asked his critics to consider the quality of life of high quads-patients who have suffered an injury high up in the spinal cord and are living on ventilators. O'Brien refutes the argument by describing his own life: he is a poet and freelance writer with a beautiful home, happy with his life and “couldn't ask for more”, he says. He is a member of Not-Dead-Yet, which strongly opposes killing of the disabled.

According to a recent survey in the United Kingdom, more and more disabled people have been found to be in favour of euthanasia. What is the trend of thought in India? What about the rest of the world?

I am not sure whether I have a definite answer for this question. The surveys are not necessarily representative of actual reality. Sometimes the methodologies that are used are problematic. Even if there are people who are in favour of euthanasia, the critical question that needs to be clearly articulated is to do with the reasons for the pro-death choices. Is it because of the system, pain, stigma or the cost minimizing tendencies of the insurance companies? When the cost factor is considered, the chances of disabled people's survival become worse. With medical and healthcare professionals being forced by insurance companies and bureaucracies to balance cutting costs against what's in the best interest of the disabled or a chronically ill patient, the possibility of being offered a cheap end to life as opposed to an expensive long term treatment is all too real.

We need to imagine a scenario in which a terminally ill/ severely disabled person is allowed to be ‘mercy-killed’ as there does not seem to be any chances of recovery or rehabilitation. However, in the near future, science does make enough progress to find the cure, for the illness/disability. If she/he would have not been allowed to die, then chances of living a healthy and productive life would have been there. There are times when each of us, disabled or non-disabled, wants to die to escape the human suffering. However we do not commit suicides. We let the moment pass and then confront reality. As an activist, I have not come across any disabled people who would want to die, except some instances like a family who wrote to the President a few years back and Venketesh in Hyderabad. In general, I do not think that disabled people are in favour of euthanasia.

You recently presented a paper on ‘New reproductive technologies’. How do such technologies impact disabled people?

New reproductive technologies are giving rise to selective abortion which occurs when the pregnancy is planned but the foetus is perceived as having undesirable characteristics. In other words, selective abortion involves judgments about foetal ‘defects.’ This thinking is in accordance with the medical model which views a person's disability as the cause and sum of that person's problems. The all-important question therefore is whether impairment can be prevented.

Prenatal testing has become a profit-making industry with hundreds of conditions now capable of being detected before birth. Screening methods now have become extremely sophisticated. Beginning with the simple ultrasound to pre implantation diagnosis, the desire to manipulate genes to produce designer babies is clearly evident. In most cases when a foetus is diagnosed as having a permanent disability, the pregnancy is terminated. If a woman decides not to continue her pregnancy then that’s up to her. But choosing whether or not to be pregnant is a more difficult choice than deciding which foetus to be pregnant with. While the first right to choose is accepted, second is problematic.

What petrifies me is not the individual choice, but a complete lack of understanding about the factors that determine choice. While sex selection raises an uproar (as it should), disability selection is not considered worthy of a debate. It seems that society is using new reproductive technologies as lead weapons in a naive war against ‘birth defects.’ It is scary to know that avoiding the births of disabled children is considered a wise choice. While sex selection data is there, disability selection will be difficult to document, as the abortion legislation mandates that abortion in case of a medical condition is allowed.

Few would know of the paradoxical situations that get created with the invention of techniques such as PGD. With PGD, couples with a family history of genetic disease could fulfill their desire to have children without having to go through a trial pregnancy. Some people are even of the opinion that affected couples have a right to this. While deaf parents asking for an implantation that would secure a perfectly hearing child is not considered pathological the converse however is not true. The idea that a couple who share an inherited trait such as some types of deafness might want to end a pregnancy involving a foetus that did not have the same gene and ‘try again’ out of the belief that their family will work better if all members have the same characteristics is controversial even in the disability community.

Do such technologies imply that there might be pre-natal screening for, and abortions of, children with disabilities? This opens a virtual Pandora’s box of ethics and morality.

Yes. According to the PNDT, prenatal screening is allowed if a medical condition/disability is suspected. In a country like India where gender ratio has been brought down as a consequence of female infanticide and selective abortion of female foetuses, disabled people will not stand a chance. Also, the process to get acceptance of a technology begins with a small group like Tay-Sachs group, but then it is likely to move on to a different group like Down's syndrome. This kind of a sanction is inherently eugenic because you are singling out a group. If people think that new reproductive technologies would reduce inequities, it is not true as genes do not cause inequities. The danger is that optional value will be ascribed to disability, creating newer forms of discrimination.