For dignity in death
PADMA PRAKASH , medical activist and writer, feels that the Supreme Court has taken a narrow view of an issue that has medical, ethical and social ramifications.
The case of Aruna Shanbaug before the Supreme Court has brought the subject of euthanasia into public debate once again; but allowing for the first time, passive euthanasia in specific circumstances. The Court has ruled, pending legislation, that passive euthanasia is permissible, and brain-dead patients need not be kept alive by support systems or artificial feeding. However, 60-year-old Aruna Shanbaug, having spent 37 years in a hospital bed, who is neither in coma nor brain-dead, may not be allowed to die.
Hailed as groundbreaking, the judgement takes a disappointingly narrow view of an issue that has ramifications across the medical, ethical and social dimensions of society. Primarily engaged with the question of who was Aruna’s ‘next friend’ who may decide to withdraw her life support, the court favoured the hospital staff who have looked after her all these years and rejected the plea of the journalist Pinki Virani who had sought permission to withdraw Aruna’s life support. Since the hospital wanted to keep Aruna alive, the Court upheld its wishes. If later the hospital wishes to withdraw life support to Aruna, it must apply to the court. Extending this logic, the Court has allowed that caretakers of those incapable and lying in similar states to seek passive euthanasia on the patients’ behalf in specific cases following an application to the high courts.
Cost of care
Curiously, the judgement does not touch upon the cost of providing such care. Interestingly, in the Airedale case (1993) in England that went before the House of Lords — quoted at length in the Aruna ruling — a noted member pointed out, “The large resources of skill, labour and money now being devoted to Anthony Bland [the PVS patient whose life support was sought to be removed] might, in the opinion of many, be more fruitfully employed in improving the condition of other patients, who if treated may have useful, healthy and enjoyable lives for years to come.” Such a concern would be significantly more relevant in India, given that our overcrowded public hospitals have shrinking budgets.
In Belgium, for instance, where euthanasia was legalised in 2002, authorities have to ensure that poor patients do not ask to die only because they cannot afford treatment. In the Netherlands too, which was the first country to legislate on euthanasia, the premise is that the patient has received at all times adequate treatment and care including palliative care. Switzerland does not allow euthanasia, but it does permit physician-assisted suicide in certain conditions. In these countries, only about 35 per cent of such deaths occur in hospitals and end-of-life care is provided at home. Demographics too has weighed in — with an increasing number of people in the pension bracket, the state social welfare and health systems in many European countries are disinclined to support unnecessary prolongation of lives on life support leading to support for legalising euthanasia.
In Japan, where 80 per cent of deaths occur in hospitals, two local courts in separate cases had allowed voluntary euthanasia; but few have subsequently sought euthanasia. Some years ago Japan set up a “bioethics SWAT team” that is on call to help families/caretakers of patients on life support decide whether they may continue such care or withdraw it. The Northern Territories of Australia, where medicare or support is not easily available, passed a short-lived law allowing voluntary euthanasia, subsequently overturned. Singapore does not allow euthanasia, though there have been periodic demands, especially with the increasing technologisation of medicare. This is true in Turkey too, where availability of sophisticated technologies in medicine has revived the debate.
Access to care
Overall, the determination of whether euthanasia must be permitted or legalised is dependent on availability of care, the status of that care, and the social and economic constraints in providing such care. In sum, the premise for even considering euthanasia is the availability and access to care. The Supreme Court in the Aruna case has chosen not to engage with these issues. Even in stipulating the review team that must examine and comment on every plea made to the high courts for passive euthanasia, there is an underlying assumption that social, financial or psychological state of the caretakers are not of import.
It is also assumed that all such cases will be in hospitals. That is of course not the case. Take the case of my domestic help and general factotum, who, for years looked after a paralysed husband, whose condition progressively deteriorated — through neglect — to a near vegetative state. Hospitals had turned him away because “there was nothing they could do”. She would strap him down on the charpoy while she worked in several houses throughout the day; and one day, the cot overturned, he was trapped underneath for hours and died in a hospital that finally admitted him. Such cases abound — increasingly in villages too where the young migrate to towns and there are no able caregivers.
There is growing evidence that access to healthcare is shrinking; a circumstance that will only mean a large number of those who ought to be in hospital under supervised care will be in homes with few resources for end-of-life care. And, clearly, outside the reach of the medical system. If denying end-of-life treatment and care were to be considered passive euthanasia, then as a country we have certainly been practising it for long. Whatever the future direction the issue takes, it must be obvious that without expanding access to healthcare and providing end-of-life and palliative funded care, legislating to allow euthanasia is something of a mockery.
Email: padma@esocialsciences.com)
Condemned to a painful life
PINKI VIRANI on what compelled her to be the “voice” of a woman in permanent vegetative status for 37 years...
On why she went to the Supreme Court with a passive euthanasia plea
I have known Aruna since 1982. The book, Aruna’s Story, was published on her 50th birthday following one year of research and interviews with relatives, hospital authorities of that time, finding court and police records, the shocking unearthing of the fact that the sodomiser was never arrested for rape — because not one doctor or nurse from the hospital came forward to file a case — and so he walked free after a mere seven years in prison. I also travelled to her village in Karnataka to spend time in her home, spoke with relatives in several cities and the man she was to marry. It became clear that she would never have wanted to “live” with such lack of dignity. So I asked about physiotherapy and was told the nurses had it stopped, which is why her body had atrophied the way it had. I organised a complete medical check-up. This was prevented by hospital doctors just before the ambulance could pick up Aruna for her state-of-the-art analysis in a private hospital. By her 60th birthday it was clear that Aruna would never receive appropriate medical care in the form of drugs and pain-killing dosages. Aruna had been denied a life of dignity for 37 years; she needed – at the very least — dignity in her death. So I requested the Supreme Court to define “life with dignity” as enshrined under Article 21 of the Constitution of India. And slowly taper-out the feed put through her pipe; this would have been done as per international norms set for vegetative patients with the inclusion of calibrated pain-killers.
Reaction to the Supreme Court ruling
Because of Aruna Shanbaug — this tragic woman who has been denied the choice because of those who profess to ‘love’ her by touting her bedsore-less agony – no Indian hereinafter need suffer the way she does. The Supreme Court has permitted Passive Euthanasia; its carefully prescribed parameters can be read on its website where the judgement has been uploaded. Readers could also look to see if her tormentors have been recommended they approach the High Court should they “change their mind”. Aruna’s other gift through this same landmark judgement is that there could be a boost in organ donations, once again positively helping millions of Indians. The judgement provides clarity on the definition of brain-death. Healthy vital organs are wasted while arguments rage over the medico-legal definition of brain-death.
Aruna’s current condition
Incurable. 62 years old. Locked in a room. Felt no direct sunshine for over three and a half decades. A feeding pipe directly to stomach. Prone to diarrhoea, catheter not used. Finger nails grow into palms. As a patient in a permanently vegetative state, does not have favourite foods, music, people and does not smile in reaction to external influences. Largely brain-dead due to massive brain-stem injury. Cortically blind. Cannot speak. Or walk. A brittle skeleton which is catatonic or shrieking. In acute pain, no medicines given. This is what her care-givers have condemned Aruna Shanbaug to; a very slow, excruciatingly painful, death.
National Award-winner Pinki Virani, 52, is author of four best-sellers including Deaf Heaven which is currently among international contenders for this year’s prestigious Impac Dublin Literary Prize.
(AS TOLD TO R. KRITHIKA)
Judicially crafted remedy
The verdict is a commendable one because for the first time we have guidelines and a procedure outlined for legitimate use of passive euthanasia, feels Supreme Court advocate GOPAL SANKARANARAYANAN .
On April 15, 1989, the scene of a routine football match at Sheffield between the clubs of Liverpool and Nottingham Forest led to one of the worst ever stadium tragedies in history. Due to ineffective police control, many more Liverpool fans entered the venue than could be accommodated, which led to a stampede and the subsequent deaths of 95 people, with as many as 767 others suffering injuries. One of those severely injured was 18-year-old Tony Bland, who suffered punctured lungs and crushed ribs, which cut off oxygen supply to the brain and rendered him a vegetable.
Bland’s own story would have been unremarkable, were it not for the fact that as he continued in what is known as a ‘Persistent Vegetative State’, being kept alive only by artificial nutrition and hydration with no reasonable hope of recovery, his family and doctors sought to withdraw all such support and allow him to die. Although the legal position till then had allowed such a withdrawal only in limited cases where infants were concerned, the legal sanction for the request on Bland’s behalf was finally accorded by the House of Lords in Airedale NHS Trust v. Bland, handed down in 1993. On March 3, 1993, after nine days without food and water, Tony Bland became the 96 th victim of the Hillsborough disaster.
Landmark judgment
Unprecedented as the approach of the English courts was, thanks to the ruling in Bland, in the years since then, close to 50 cases of such deaths have been sanctioned in the UK, where people in vegetative states have died with apparent dignity and little or no distress.
This judgment, and similar trends internationally have come to form the foundation of the Supreme Court’s ruling last week in the case of Aruna Shanbaug, an unfortunate nurse who was brutalised and raped by a sweeper 37 years ago in Bombay — an act where a dog chain around the victim’s neck cut off the oxygen supply and gave her the same vegetative state of Bland — and who till date has been under the care and support of the KEM Hospital where she had been employed. Journalist and author Pinki Virani preferred a petition on behalf of Shanbaug and sought the Court’s intervention to direct the Hospital to stop feeding the patient and allow her to die peacefully.
The Court draws distinctions between active and passive euthanasia (killing and letting die) and recommends that the latter be permitted in certain circumstances. However, of equal importance is the question of who would decide whether life support ought to be withdrawn in a particular case. It is this question that gained prominence, with the Court declaring that it was the hospital staff that had been the family for Shanbaug and not Virani. As the hospital staff clearly wanted Shanbaug to live, the request by Virani for passive euthanasia was rejected.
While the attempt to commit suicide continues to be an offence on the statute book (one of those rare instances where the mere attempt alone can be penalised, but not it’s successful execution), and its validity has been upheld by the Supreme Court in 1996, the present judgment suggests that as the provision has become anachronistic, it is time for Parliament to consider deleting it.
Guidelines and safeguards
In conclusion, the Bench also issued guidelines for the purpose of processing applications for passive euthanasia, expressing its concern that without such safeguards, many unscrupulous elements may take wrongful advantage of the legal position. As a result, all such applications may be made to the High Courts, and three-member Committees of doctors would render their opinions on the cases, which would be considered along with the wishes of the families and near relatives before a decision is taken.
The decision of the Court is a far-reaching and commendable one, and it has been many years coming. It clarifies the limits of Section 306 of the Penal Code which criminalises the abetment of suicide and poses a penal threat to doctors who wish to withdraw life support to patients like Shanbaug. The rationale for this is the fact that in letting a patient die, there is no attempt to terminate his or her natural course of life (as would be the case with active euthanasia), but only removing the facility by which the natural course of life is being artificially extended. In the months to come, may be other families who no longer harbour the hope of meaningful life returning to their dear ones would avail of this judicially crafted remedy. It is interesting to note that this piece of judicial craftsmanship comes from the pen of Justice Markandeya Katju, who is one of the more strident critics of judicial activism.
But as always, as a grim reminder of the limits of the law, and the limitless machinations of the living world, there is one fact: In March 1997, eight years after he was also rendered vegetative by the events at Hillsborough, Andrew Devine became aware of his surroundings and started communicating with his family. After the judgment in Bland’s case, Devine’s solicitor had said, “Mr. and Mrs. Devine sympathise with the Blands but their attitude is not the same. They hope that one day Andrew may recover some of his faculties.”
Who decides?
Why was the customary ‘Best Interests’ test, where the court should be guided by the interests of the patient alone and not of others, ignored in the case of Aruna Shanbaug, asks JAYNA KOTHARI .
Aruna Shanbaug has changed the course of the right to die debate in India. While the Supreme Court rightly rejected the petition seeking permission to remove Aruna’s feeding tube, it went a step ahead permitting passive euthanasia for persons in a permanent vegetative state if it is in their best interests and laid down guidelines for it.
Who decides what is in the patient’s best interests when she is in a permanent vegetative state? Justice Katju held that it was in the Court’s power as ‘Parens Patriae’ to decide what is in the best interests of the patient.
The common law doctrine of ‘Parens Patriae’ has been generally applied in situations where the State must make decisions to protect the interests of persons who are unable to decide for themselves such as minors and persons who are mentally incompetent. Two tests for deciding the ‘Parens Patriae’ jurisdiction on behalf of mentally incompetent persons have been evolved — the ‘Best Interests’ test and the ‘Substituted Judgment’ test. The ‘Substituted Judgment’ test requires the court to step into the shoes of a mentally incompetent person and attempt to make the decision, which the person would have made if she was competent.
Interests of the patient
The Supreme Court in the Suchita Srivastava judgment, where the right to continue the pregnancy of a woman with mental retardation was decided, relied on the ‘Parens Patriae’ doctrine encompassing both these standards. In this case, the substituted judgment test was not required as the woman clearly wished to continue her pregnancy. It held that in deciding the ‘Best Interests’ test, the Court should be guided by the interests of the patient alone and not of others, including guardians. In this manner, the Court protected the patient’s autonomy and refused the termination of her pregnancy.
In Aruna’s case, surprisingly, the Court completely ignored this ‘Substituted Judgment’ standard, upheld by a three-judge bench in the Suchita case. It only relied on the Airedale judgment of the House of Lords where the substituted judgment standard was not used and permitted passive euthanasia on a low standard of ‘best interests’ which should be decided by taking the wishes of parents and relatives in mind.
Denial of rights
Such a ruling denies all recognition of the right to autonomy and self-determination of a person although she may be incompetent to consent. Debates on legal capacity of mentally incompetent persons have moved to protection of their legal capacity and not its usurpation under the criteria of ‘best interests’. In the Nancy Cruzan case, the US Supreme Court held that individuals incompetent to consent retained a right to refuse treatment, but that such a right could be exercised by a surrogate decision maker only when there was clear evidence that the incompetent person would have exercised it. Only when such evidence was lacking could the court still invoke this right in certain circumstances under the “best interest” standards.
The Aruna Shanbaug judgment leaves the door open for passive euthanasia by relatives of persons who are severely disabled, sick and the elderly, with no requirement to see if the patient herself would have consented to it. Are we ready for this?
(The author is a lawyer and researcher practising in the Karnataka High Court.)
A celebration of life?
Most of the concerns about the abuse of the law are relevant only if involuntary euthanasia is legalised and not when it is voluntary, says DR. NAGRAJ G. HUILGOL .
There seems to be considerable confusion about euthanasia with the lay people as well as doctors. It was evident while listening to debates on various TV channels in India.
Euthanasia could be voluntary, non-voluntary, involuntary and passive. Patient seeks to die when euthanasia is voluntary; non-voluntary is when a relative seeks euthanasia with appropriate power of attorney. Involuntary euthanasia is an act of intervention without consent or request by the patient or patient’s relatives with a power of attorney. Voluntary euthanasia is the least controversial. Voluntary euthanasia is expression of autonomy of an individual over his or her own body. It is an answer to the clichéd question, ‘whose life is it anyway?’.
Necessary conditions
There are certain prerequisites to be fulfilled before a request for euthanasia can be made. The conditions are: a patient must voluntarily on his/her own initiative, express the desire to die than suffer. The patient’s judgment must not be altered or influenced by illness, medication, social or economic circumstances or depression. The diseases must be terminal, incurable and causing unrelenting suffering. It has to be ensured that the request was done due to lack of adequate resources. Euthanasia should never be linked with organ donation and harvesting for transplants. A set of doctors who are independent of primary care of the patient need to certify that patient is suffering from terminal and incurable illness. An independent psychiatrist should certify that the person is not undergoing severe depression. There should be adequate time for the person to reverse the decision to seek euthanasia after deciding on the same. All these guidelines have ensured that the fear of a slippery slope is far from real.
Legitimate concerns?
There are many concerns besides the abuse of the law — the famous slippery slope. The experience of Dutch and Oregon law have dispelled this fear. There is no evidence of abuse of the provision so far. Some other concerns are the abuse of the provision to reduce healthcare cost, the law acting as a dampener to evolve better therapeutic options and eliminate the less privileged or those who lie on the fringes of society. Most of the concerns are relevant if involuntary euthanasia is legalised and not when it is voluntary. Death is only a pregnant pause in the symphony of life. Good death, in fact, is a celebration of life.
The writer is Chief Radiation Oncologist, Dr. Balabhai Nanavati Hospital, Mumbai.)
Uniting bond
At the hospital where she has spent more than 42 years of her life, Aruna Shanbaug is much more than just another patient, says VINAYA DESHPANDE .
Aruna Shanbaug, now 60, has been a part of King Edward Memorial (KEM) Hospital, Mumbai, for more than 42 years now — first as a nursing student, then as a nursing staff and then a patient who, while lying in permanent vegetative state for more than 37 years, has bound generations of hospital staff.
“Aruna is the bond that unites us. She means a lot to KEM hospital,” KEM Dean Dr. Sanjay Oak is said to have told the Supreme Court during the hearing.
Most of Aruna’s colleagues and friends have retired now. But the memory of November 27, 1973 has not yet faded in their minds.
Work ethic
Before that fateful day, she was a budding professional who wanted to scale new heights. Aruna could not withstand tardy and shoddy work. Her colleagues still tell tales of her impeccable work standards. That was the reason she reprimanded Sohanlal Valmiki, a ward boy at the canine experiment department of the hospital, whom she suspected of stealing the meat that used to be ordered for the dogs. It was the grudge and the ill-will of this man which was to permanently alter Aruna’s life.
“I still remember the day it happened. After the sister-in-charge informed us, matron Beliman and I rushed to the basement. The moment she saw matron Beliman, tears started rolling down her eyes. She was conscious, she wanted to say something. Her lips were moving, but she could not speak up,” says Pramila Khushe, a nurse at the hospital then and Aruna’s senior.
Aruna was strangulated by a dog chain and sodomised by Sohanlal in the basement of the hospital where she had gone to change after her duty. The brutal attack severely damaged her brain. “I remember the day this incident happened, there were many food poisoning cases in the paediatric ward. Children were lined up for treatment. Aruna volunteered to stay longer that day to help. Such was her integrity towards work. She was very committed,” Ms. Khushe says.
“She was a good girl, a good student and a good nurse. She was a disciplinarian. That may also be the reason why she had to face the kind of misery she did,” Durga Mehta, the then matron of the KEM Hospital and a teacher to Aruna, says.
After the incident, a fleet of doctors and neurosurgeons tried to pull her out of the vegetative state. The attack had cut the oxygen supply to her brain and left her cortically blind. She also suffered brainstem contusion injury and cervical cord injury.
“The one who put her through all this pain, went off with a light punishment. But she is still suffering unbearably for his sins,” Ms. Khushe said. Sohanlal was booked for robbery and attempted murder, but not for “unnatural sexual offence”. The hospital authorities probably did not want to register such a case against Sohanlal because they wanted to protect Aruna from the social ostracism considering her impending marriage. He served a sentence of seven years after which he was let off.
“Her parents had already passed away. She had a brother, but he himself was old then. For four-five years after the incident, her niece used to come regularly and feed her. Then probably she got married and never returned,” Ms. Khushe says.
Dedicated
But the man in Aruna’s life stood strong by her for quite a few years in the hope that she would recover some day. He religiously continued giving her physiotherapy. “We used to feel touched every time we saw him come and sit next to her. He used to give her physiotherapy treatment. He served her when she was so helpless! We felt deep appreciation for him,” Ms. Khushe remembers, even as she fought to hold her tears back.
“He was very dedicated towards her. But after a few years, the doctors in the hospital convinced him to move on with his life,” Ms. Mehta says. Since then, it has been the entire KEM staff including the medical, administrative, nursing and para-medical staff, which has been taking care of Aruna. She is introduced to every new staffer as a family member.
The Mumbai corporation tried to shift her to another hospital twice since 1973, but the nurses protested the decision, making authorities revert. For years, the corporation has spent for her treatment and the KEM hospital has stood by this Ward 4 patient.
“She is like a sister to me. I know her since the time I joined this hospital as a student. We are her family and we want her to live. No one else has the right to decide for her. The verdict is the victory of humanity,” Sister-in-charge Vibhawari Winge says, celebrating the Supreme Court verdict.
Across the spectrum
Passive euthanasia was practiced by the ancients, a prime example being Bhishmacharya choosing the time of his death. Ayurveda says that if the treatment cannot provide a person a quality-life then it is better to give no treatment other than palliative measures. Death is not something to be feared. It should neither be accelerated nor delayed but must be treated as a natural process. Thus it would be considered acceptable to remove life support in the case of a terminally ill person with the consent of all involved.
Death is simply the soul giving up an old body and moving on. There is a saying in India, It does not matter how your life has been throughout but the last thought is very important. Hence dignity of death is a very treasured aspect of Hindu life.
Sri Sri Ravi Shankar, spiritual guru, and Founder, Art of Living.
Passive euthanasia is justified. The quality of life is more important than quantity. If a person can think for himself/herself and wants to go, he/she should be allowed to go using passive euthanasia.
Dignity in death is when a person dies while being surrounded by people he/she loves and who love him/her.
N.S. Hema, Founder, The Association of People with Disability and wheelchair-user for 70 years.
Passive euthanasia is a process by which you withdraw supports like general care and feeding so the patient gradually dies due to dehydration. We are trying to induce western standards into the Indian scenario. Euthanasia in our country can be disastrous as we simply do not have the infrastructure to prevent the misuse. The definition of dignity in death is that there is a process in which we expect the patient to die without much pain.
Dr.Devi Shetty, cardiac surgeon.
I don’t agree with euthanasia––passive or active. Everybody has a right to live. No one should be allowed to kill himself/herself or give permission for another person to die. Suffering is not an excuse to take away God-given life. Dignity in death is surrendering to God's will, being patient and going when He takes you away.
Y.G. Krishnamurty (100 years), Advocate, Andhra Pradesh High Court, with a record 75 years of being a practising lawyer.
(As Told To Aruna Chandaraju)
