What does one mean by “the right to die with dignity”?
The right to die with dignity is closely linked to “life with dignity”, which is guaranteed as a fundamental right in the Constitution of India. True, this is violated in many manners. But in the context of life-limiting diseases, the violation is totally unnecessary. The Economist Intelligence Report published a few years back, after studying the way people live and die with disease in 40 countries, found that India came 40th, after Uganda, in the way the dying are treated.
The poor, often, are rejected by the medical system, when disease is incurable, saying, ‘There is nothing more we can do.’ Before the rejection, all their resources are exhausted by the treatment costs; the last months of their life are often spent in agonising pain, or other physical discomforts associated with psychological, social and spiritual suffering. Pain is one of the commonest problems. Pain is often excruciating, especially in cancer, and the intensity is beyond comprehension. The loving father or mother is converted by pain to a selfcentered being with no consideration for others, often their behaviour changes, agitation or hallucinations occur.
The rich have a different, sometimes worse kind of death waiting for them. Even when the disease is incurable, even though everyone knows that death is the inevitable consequence of life, they are still treated in Intensive Care Units (ICU). The normal biochemical or electrical changes in the function of vital organs are so aggressively treated that the person finds himself with a tube in every orifice and cables covering his body. The family is kept away, except possibly for a few minutes, once or twice a day. At least one-third of people (two-thirds, if elderly), lose their minds. When they get agitated and start pulling out tubes, their hands and feet are tied. The tube down the throat offers the worst kind of suffering. In India,the poor and the rich all suffer such cruelty and indignity at the end of life.
How and when do we decide life is ‘unsalvageable’?
Medicine is not an exact science. Medical science cannot enjoy the precision that an electronic equipment can expect to have. Therefore, there is always the possibility that any medical diagnosis or prognosis can be inaccurate. In the context of deciding on unsalvageability of life, this imprecision does come into place. There have been very, very rare reports of unexpected “miracles”, but please think of the person on the ventilator, subjected to intensive torture, prior to death. The promise of a very, very rare miracle is meaningless to that person at this time.
In practice, what is considered right by the international medical and lay community is to seek the opinion of two expert medical specialists (the Medical Council of India recommends three), who together look for “reasonable” chances of recovery or of restoration of quality of life.
What is passive euthanasia? How different is it from active euthanasia and physician assisted suicide?
A word can be used by different people to mean different things. The scientific community led by intensive care specialists and palliative care specialists have arrived at precise definitions which, unfortunately, do not necessarily agree with the way the word was used by the Supreme Court of India in their landmark decision on the Aruna Shanbaug case in 2011.
The term euthanasia should be used (whether active or passive) only when there is the deliberate intention to end a life by an act of commission. Death is the inevitable end of life. Permitting natural death should never be called euthanasia. If artificial life support measures have already been instituted, withdrawing them is still allowing natural death, and by the unanimous understanding of the knowledgeable medical community, does not become euthanasia. In euthanasia, typically, a lethal medicine is injected into a person, to end life. This has been legalised in a few countries and in some states in the United States of America. In every country that it has been legalised in, it is done with the patient’s written consent.
While in active euthanasia, a medicine is injected by a medical professional, in passive euthanasia, the professional connects up the lethal concoction of medicines, connects it with an intravenous catheter placed inside the patient’s vein, and allows the patient to open that infusion himself. This is assisted suicide. Ethically, the difference would be negligible. Practically, this offers a safeguard that in case the person wants to change his decision at the last moment, he is still capable of doing it. Very often, the layman and sometimes misguided professionals use the term passive euthanasia to describe withdrawal of artificial life support. As given in the guidelines provided by the European Association of Palliative Care, Indian Society of Critical Care Medicine and other bodies, withdrawal of artificial life support and allowing natural death should not be called passive euthanasia.
What is a ‘living will’? Is it the same as ‘Do Not Resuscitate’ or DNR? What in your opinion should be done in the absence of such a will?
Typically, DNR is an instruction left by a doctor on a patient’s file. By doing this, the doctor is practically announcing that the patient’s condition is unlikely to be restored to reasonable quality of life and therefore, further treatment will be futile. Again, typically, such a decision is taken with the patient’s expressed wishes or if the person is incompetent to take such a decision, by the next of kin.
A living will is a document left by the person when mentally competent to do so. This can be done now when one is reasonably well and perhaps before one gets a disease. The Medical Council of India has given guidelines for this, which were applicable only for specific instances. Pallium India has modified it and created a sample living will, which you can find at https://palliumindia.org/resources/end-of-life-care/. In the living will that I have prepared for myself, I have said that if I have a disease which is unlikely to get cured or with which, in the event of a deterioration of my physical and mental condition, I am unable to be restored to reasonable quality of life, I should not be treated in an ICU and that I should be kept in a place where my family can have easy access to me and to care for me as they wish. In it, I have left clear instructions that in such events, aggressive life support measures like the artificial ventilator should not be used on me and that I should be offered palliative care for relief from any pain or suffering which I may feel at that time.
What is equally important is that in addition to this, I have conveyed this clearly and got my wife and my sons to agree to this. This conversation is not always easy, and loving family members are likely to reject the suggestion of such a discussion. Now, my family understands my wish and is willing to go by my decision. But even then, I fear that the medical system may cause emotional suffering to my family by asking them to sign papers. In its effort to protect itself, the medical system writes unnecessarily cruel words like “I accept responsibility for my husband’s death” etc. To avoid causing such agony to my family, I have talked the matter over with my nephew, who, I hope can be a little more emotionally detached, and I have named him my proxy in my living will, authorised to take such decisions.
In the absence of such a will, the Medical Council’s recommendations of 2003 were well-thought out and reasonable. That is, if the condition is unsalvageable, the doctors must discuss it with the next of kin and with the consent of the family, three specialists should examine the person independently to decide on “futility of treatment”. This was a reasonable procedure and it is our hope that the Supreme Court will allow a similar system to come into place when they hear the review petition by the Indian Society of Critical Care Medicine.
What are the Law Commission and Medical Council of India guidelines with regard to “withdrawal of life support”?
The ethical committee of Medical Council of India had given recommendations which were passed by the Council in 2003. More recently, the Law Commission of India also has provided clear recommendations. Unfortunately, neither is Law. In the absence of a Law, the courts are likely to go by the decision of statutory bodies like the Medical Council of India or the Law Commission of India or of professional organisations. But now that the 2011 verdict has come, its decisions about withdrawal of life support in the context of the person being incompetent to take a decision, stands. That means even if the doctors and the family agree, the ventilator can be withdrawn only if that state’s high court gives an order to that effect.
What is palliative care?
How important is it? Palliative care is aimed at quality of life. It is not something only for the end of life; it is something that should start with any disease-related suffering and should go hand-in-hand with curative treatment. It aims to prevent, identify and assess pain and other elements of physical suffering as well as psychological, social and spiritual issues arising with life-limiting diseases by removing those problems that are amenable to solutions and by offering to “walk with the patient and family”, it offers a support system.
In 2012, the Ministry of Health, Government of India, formed a National Programme for Palliative Care. In February 2014, the Indian Parliament removed the regulatory barriers to access to pain medication. In May 2014, the World Health Assembly, the decision-making body of the WHO, passed a resolution declaring that palliative care should be integrated into all health care.
What is the extent of palliative care available in India?
Unfortunately, palliative care is available only to a tiny minority of the needy in India. Different authors, using different criteria, have worked out the access to palliative care as reaching from 0.4% to 4% of Indians. On the positive side, Kerala, though occupying only 1% of India’s landmass, has become the leader in palliative care. Not only that, Kerala has shown the world how the community needs to be involved. This fits in well with the concept of making use of the social capital – the power of the community – in healthcare. The Kerala community, at large has accepted that disease is not the responsibility of one person or one family alone, and that when our fellow citizens are suffering, the community has the responsibility to chip in.
You had a big role to play in bringing the Parliament of India to amend the NDPS Act of 1985 last February. What impact does this have on palliative care in India?
The amendment of the NDPS Act, as a consequence of 19 years of our efforts, does mark a huge positive change. But, by itself, the impact is feared to be negligible unless we are able to work with state governments to ensure efficient and effective implementation. Many of the regulatory hurdles are removed; but it still requires action by the drug controllers of states and even if it is efficiently implemented, it would still be meaningless, unless doctors take pain management seriously. Unfortunately today, modern assessment of pain and management are not taught to medical and nursing students. Having said that, the fact remains that one major hurdle has been removed with the amendment of the NDPS Act.
You are often referred to as ‘father of palliative care in India’. What made you pursue this branch of medicine?
The real father of palliative care in India is Dr. Lusito De Souza, an onco-surgeon in Mumbai, who created the first “hospice” in India – the Shanti Avedna Sadan in 1985. I am among the many people who helped palliative care grow in the country.
I am an anesthetist by training. As a medical student, and later as a doctor, I found that people with pain were too often ignored. My training as an anesthetist gave me the power to treat pains even outside the operation theatre. I could not turn away from that suffering when I had the power to relieve some of it. Later, I realised that pain was only one part of the problem, and then I came across the concept of palliative care.
What do awards like the Alison Des Forges mean to you and the work you are doing?
The Alison Des Forges award is a huge honour. It is recognition of the right of the human being for humane treatment, vis-à-vis high-tech disease-focussed treatment that ignores human suffering. For me, the fact that three things came together this year is remarkable: The amendment of the NDPS Act of India, the declaration by the World Health Assembly that palliative care should be an essential part of health care, and the recognition that the developments in Indian palliative care are important for the global human rights activism as a whole, are reassuring. If the palliative care work in India had one major fault, it is that we activists were not sufficiently effective with our advocacy. Till the man on the streets understands that he has a right to receive pain relief, and to live and die with dignity, no medical system will be adequately effective. This award will be a major boost to palliative care advocacy. I am very grateful to Human Rights Watch.