Sunday, June 26, 2022

No Gain from this Pain

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A draft bill on passive euthanasia shows that the government is willing to finally deal with this highly emotive issue that will relieve suffering for the terminally ill

By Ramesh Menon

Euthanasia has been a hot potato no one wants to hold. But public debate and pressure groups have finally forced the Union Ministry of Health and Family Welfare to come out with a draft bill on passive euthanasia. Even so, there has been no real national-level discussion on this sensitive issue of ensuring that a patient has the choice to die with dignity and not in pain and misery.

Culturally, relatives of critical patients easily give in to the pressure of doctors who want to continue treatment even if it is futile instead of ensuring good palliative care in the last days. But doesn’t a terminally ill patient have the right to stop treatment and die with dignity than prolong life with expensive steroid injections and lying prone in the ICU with life-supporting systems?

With medical care becoming expensive, debate on this issue became sharper and found resonance with millions of Indians when activists talked about how doctors had found ways and means to fatten hospital bills when there was no need. Instead, they could be allowed to die with dignity and peace.

This can be possible only if we have a culture of palliative care which focuses on improving the quality of a patient’s life, not its length, and when it is obvious that medicines won’t help alleviate the suffering. That’s when the focus shifts to reducing the pain, along with psychological counseling and spiritual care. Often, this has to be extended to care-givers also as they too need help to cope with the related trauma and helplessness. But in India, palliative care is rarely available as the goal for most in the medical fraternity is to prolong life, generate bills and thereby, enhance profits and business.

A study by the Economist Intelligence Unit which is associated with The Economist, ranks India 67 out of 80 countries it studied last year on the quality of death among patients. Western countries were on top, led by the UK. In these countries, the practice is to ask terminally ill patients at the outset how they would like the treatment to be administered in case there is a life-threatening episode like a heart attack. Or whether a ventilator should be used if there is breathlessness. If the patient chooses not to have any artificial methods to stay alive, it will be respected and is legal. In case the patient is of unsound mind, the relatives can be allowed to take a decision. This is a mature way to deal with this issue. So why can’t India follow this procedure and make it legally binding so that the healthcare system here is not hesitant to follow it?

In most cases, doctors convince relatives to go for expensive treatment even for patients who are terminally ill, assuring them that miracles could happen. Many a time, relatives give in only to realize that it was pointless when the patient does not recover. Shattered families carry the body home after shelling out lakhs of rupees which could easily have been avoided.

Nikhil Bhambure, a marketing executive at Dyworks in Mumbai, constantly thinks of the pain and helplessness his 80-year-old grandmother in Pune has been going through for the past one year. She slipped and fell in the bathroom, breaking her back. Ever since, she has been bed-ridden, disoriented, has shrunk in size and lost her appetite. Said Bhambure: “She was such a hard-working, independent woman and so proud of herself. It hurts to see her in this condition. She has to be fed and often cries as she is so helpless. Why don’t we have a law that permits passive euthanasia? It would end the pain and misery for many patients and their dear ones.”

A Human Rights Watch report in 2009 said that about seven million patients in India needed palliative care annually. However, only a small fraction of them is lucky to get it. Though WHO has recommended that every country institute a national palliative care policy, India has not bothered to have one. Hospices are still not popular in India, though they can be a source of succor for terminally ill patients.

Those running hospices say that doctors do not refer patients there as they prefer to keep them dangling on expensive life-support drugs or systems. Changing this attitude will not be easy. The Medical Council of India has not even thought it important to include palliative care in the medical education syllabus. That is as stark as it can get. 

Over a year ago, the Modi government had strongly objected to a Supreme Court’s decision to adjudicate a plea for making passive euthanasia legal. Attorney General Mukul Rohatgi had then said: “The government does not accept euthanasia as a principle. Our stand on euthanasia, in whichever form, is that the court has no jurisdiction to decide this. It is for parliament and the legislature to take a call after a thorough debate and taking into account multifarious views.”

However, there has now been a change of heart as the government seems amenable to looking at it afresh by framing legislation. The Directorate General of Health Services has proposed formulation of legislation on passive euthanasia. But it did not okay active euthanasia as it could be easily misused by scheming relatives. Active euthanasia involves a doctor injecting lethal medicine like sodium pentothal into a patient to trigger deep sleep, followed by a painless death once he is convinced that a terminally ill patient has no chance of survival. On the other hand, passive euthanasia requires doctors to switch off life supporting machines attached to a patient to keep him alive with the consent of relatives.

The Supreme Court has earlier noted that in active euthanasia, intervention leads to a patient’s life ending, while in passive euthanasia, something is not done to prolong a patient’s life. Passive euthanasia is legal even without legislation, provided certain conditions and safeguards are maintained, a Supreme Court judgment in 2009 said. The Supreme Court has made it clear that if a person consciously and voluntarily refuses to take life-saving treatment, it will not be seen as a crime. Author Jai Arjun Singh says that euthanasia should be allowed if the patient desires it.

The draft Medical Treatment of Terminally Ill Patients Bill, which came out in early May, says that patients should be informed of the nature of the illness, what alternative treatment is available, the consequences of the treatment and also of not being treated. It says that any patient above 16 years has the right to take a decision on discontinuing treatment which will be binding on the attending doctor. But he has to be convinced that it is an informed decision. However, the decision of the patient can be implemented only after three days so that he and his relatives can talk it over.

The Director General of Health Services and the Director of Medical Services will be required to set up a panel of medical experts from varied branches such as medicine, surgery, critical care medicine or any other specialty to implement this act. Even if medical treatment is withdrawn, the doctor can provide the patient with palliative care.

Under this bill, passive euthanasia is not seen as a crime. But it says it can become a criminal offence due to the existing Indian Penal Code and therefore, the patient and the doctor must be protected under this Act.

The name of the hospital, medical practitioner, patient, spouse and parent of the patient, medical experts and witness would be kept confidential. The bill permits guardians to appeal to high courts if they feel that the patient’s decision of stopping treatment is not an informed one.

The 2006 Law Commission’s report said that anyone above 16 years has the right to take a decision of opting for passive euthanasia, provided the doctor also felt that it was an informed decision taken logically. It specified that even if medical treatment has been withheld or withdrawn, it would not debar the doctor from providing palliative care.

In 2012, the Law Commission report, “Passive Euthanasia—a relook”, said that it should only be allowed with safeguards. Dr Caesar Roy, assistant professor at Midnapore Law College in West Bengal who has researched the subject, said: “A terminally ill person must have the right to choose to live or die. The euthanasia bill must be passed as it is possible to implement both active and passive euthanasia if there are proper safeguards in place. If other countries have successfully implemented it, why cannot India? It is certainly the need of the day.”

Acting on a petition filed by NGO Common Cause, a five-judge bench on February 25, 2014, said that a clear law on euthanasia was mandatory. The bench observed that “Right to live with dignity” included the “Right to die with dignity”. In July that year, the Supreme Court had asked all states to respond with suggestions to a law that would allow withdrawal of treatment for patients in a vegetative state. At that time, the center opposed it saying that it was akin to suicide. Then health minister Dr Harsh Vardhan said a national consensus should be built before any decision was taken on euthanasia as it was a highly emotive topic and involved both social and cultural issues.

Euthanasia came into public focus when author Pinki Virani filed a writ petition on behalf of Aruna Shanbaug, a nurse at King Edward Memorial Hospital in Mumbai who was in a coma for 36 years. Virani urged that her artificial feeding be gradually reduced so as to help her get the benefit of passive euthanasia as there was no hope of her ever regaining consciousness. Aruna suffered from permanent brain damage after being strangulated with a dog chain by a ward boy to silence her screams when he raped her. After hearing the nurses plea that passive euthanasia for Aruna not be allowed as they had taken care of her all these years and would continue to do so, the Supreme Court did not permit it but laid down comprehensive guidelines to explain the process of passive euthanasia. It stated that the guidelines would be followed till the Union government made legislation on the subject.

Hopefully, after the center considers the suggestions which it is slated to by the middle of June, it will start the process of finally drafting the much-needed bill and seeing it through. This could be a breakthrough that will help reduce the unnecessary pain that thousands of terminally ill patients and their families go through.

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