As I approach the end of my life…Sunil Pandya
Department of Neurosurgery, Jaslok Hospital and Research Center, Mumbai, Maharashtra, India
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0022-3859.166507
Source of Support: None, Conflict of Interest: None
Empty-handed I entered the world
Barefoot I leave it.
My coming, my going -
Two simple happenings
That got entangled.
Kozan Ichikyo, on the morning of his death (February 12, 1360, at the age of 77 years)
Philosophers, poets, essayists, scientists, and other gray eminences have over the millennia written reams on life and death. More recently, we observe that there is a focus on how we die. In part, this follows the development of progressively more potent methods for extending life and postponing death even though death is inevitable. Anxiety on prolongation of meaningless existence using machines such as the ventilator or drugs such as vasopressors has grown and the motive behind their usage is suspected to be the pursuit of profit and not the welfare of the patient. Concern is also expressed on the futility of keeping "alive" an individual who is not and will never be sentient or capable of voluntary action and who will need constant, intensive care over the remaining days, weeks, months, or even years.
At the King Edward VII Memorial Hospital in Mumbai, Maharashtra, India, the tragic fate of staff nurse Ms. Aruna Shanbaug set off a chain of reactions after Ms. Pinki Virani unsuccessfully moved the Supreme Court to sanction the termination of life by forcing the nurses caring for her to stop feeding her. This essay discusses some sensitive issues surrounding the last phase of life and also includes personal views and decisions and the rationale behind them. The observations are restricted to India, referring only in passing to practices abroad.
The fear of death
This forms the basis for many personal decisions made by a terminally ill individual. Most of us subscribe to Woody Allen's philosophy, "I'm not afraid of death; I just don't want to be there when it happens." Fear of the unknown probabilities that lie beyond death, conditioned by the concepts of heaven and hell and that of return to the earth in another form permeate our conscious and unconscious minds. The belief that decisions will be made by a nebulous superior being often referred to as God and will be based on our deeds during life dominate our thoughts as we prepare for death. We are also unprepared to let go of life and concentrate on the many tasks yet unfulfilled and the bonds with those whom we love and cherish and must leave behind.
Philosophers score over the rest of us here. Their wisdom has enabled them to prepare for death throughout their lives. They envisage what was before we were born and can rationally equate events after our death to that continuum in which we played a small and finite role. This helps them avoid the thoughts and feelings that plague the rest of us. We had a beginning that must logically have an end. Were we to take a wider, deeper perspective, we would realize that the solar system too has a finite span and must eventually meet its end - as do so many vast areas in the universe! Therefore, we are mere specks in the scope of this vast system in which Earth is but one planet and will pale into insignificance, and can be viewed in this perspective.
The Transplantation of Human Organs Act 1994  defines the conditions under which vital organs such as the heart, liver, or kidneys can be transplanted from one individual to another. Enshrined within the Act is the definition of brain death and the criteria for its diagnosis. The Act does not specifically state that this definition is to be used only in patients who are potential organ donors but it also does not specify that that once the diagnosis is made, if the brain dead person is not a candidate for donating organs, all the measures for prolonging his/her existence - use of vasopressors, artificial ventilation, intravenous drug therapy - must cease and the body be handed over to the family. This lack of clarification has resulted in a conundrum.
Administrators in private hospitals have seized on this ambiguity to interpret the Act to define brain death only if the patient is a candidate for donation. If, for any reason, organs are not to be removed for transplantation, they forbid taking off the ventilator and withdrawing all drug and intravenous fluid therapy. They continue to rely on the complete and irrevocable cessation of the heartbeat and respiration and a persistently flat electrocardiogram (ECG) tracing as being diagnostic of death. Therapeutic measures can be withdrawn only after there is no heartbeat or respiration.
This flies in the face of rationality. If the patient is a candidate for transplantation, the surgeon can remove the heart, liver, kidneys, and other organs. The corpse minus these organs is then handed over to the family. However, when the patient is not a candidate for organ donation, very expensive treatment in the intensive care unit continues for hours, days, or at times even 1 week or more! Attempts at getting a legal solution to this conundrum have failed so far.  If logic was permitted to dictate actions, India would follow the practice of using "brain death" as the new definition of death, relegating the cessation of heartbeat and breathing to history.
This word has a Greek origin. Eu refers to "ideal" or "good" and thanatos is translated into English as "death." The composite word, thus, refers to a good death. The demise of Dr. Manu Kothari, Emeritus Professor of Anatomy at the Seth Gordhandas Sunderdas Medical College in Mumbai, Maharashtra, India is an example of a good death. While chatting to his family members at home, he experienced a brief discomfort in breathing and was no more. There was no prolonged illness, suffering for himself or his family, or any burden imposed on loved ones forced to care for him. Others, such as Dr. J. C. N. Joshipura, Emeritus Professor of Orthopedics at the Sir Jamsetjee Jejeebhoy Group of Hospitals, died while in deep sleep.
These are the kinds of death one wishes for oneself and our loved ones. Alas! Our wishes are not always granted. As noted above, some deaths follow prolonged and often unbearable suffering. Others result from illnesses that leave the patients bedridden for months and even years, unable to attend to their bodily needs and dependent on loved ones for care. In poor families, where survival demands that each member earns the family's daily bread, there may be no one to attend to such a person for several hours each day. Pressure ulcers, infections in the urinary bladder, and other consequences further worsen the plight of the patient and his/her family. The concept of providing such persons a good death has found acceptance in countries that have accepted living wills and permit assisted suicide. 
Should I be enabled to choose the manner and time of my death?
Our society prohibits this in the case of the able-bodied, terming such a choice suicide and imposing penalties should the endeavor to end life fail. What about the person facing inevitable death in the foreseeable future - from motor neurone disease that has reached the stage where swallowing is difficult or extensive cancer that has spread to many vital organs despite all therapy? Or a person such as Ms. Aruna Shanbaug, condemned to vegetative existence by a rapist who destroyed her mind? Should such individuals be granted the boon of "good death," an end to life without the horrifying specter of choking on one's sputum, or the terrible pain and worsening immobility and the feeling that they are grave burdens on those who love them, or a meaningless existence where there is little or no cognition or volition?
The law in India is clear. No one - including the ill individual - may take any step to terminate life. Such a step is illegal and punishable.  There are many arguments favoring this approach. Here are two of them. The deeply religious believe that life was granted by God, who alone can decide when it should end. Medical expertise has the capability of alleviating most symptoms - difficulty in swallowing, pain, and immobility in the cases referred to above. Ms. Shanbaug was helped with deep affection and dedication by her colleagues over the decades to live without evident suffering, infections, and pressure ulcers.
Advocates of the right to die with dignity in India are waging a campaign to allow mentally competent, terminally ill persons to decide how and when to die. They point to practices in the Netherlands, the states of Oregon, Washington, Vermont, and New Mexico in USA and other parts of the world that have legally permitted doctors to help such persons to end their lives. In such countries and states, the law permits "assisted suicide" under strictly controlled conditions. Once these conditions are met, the patient's medical attendant can prescribe and even administer a drug that will terminate life. In these countries and states what the law elsewhere views as a crime is translated into a medical measure aimed at enabling death with dignity. 
In India, Jainism goes a step further. It reveres persons who starve to death after they have fulfilled all their social responsibilities and have neither the desire nor ambition to live further. Santhara or sallekhana enables such persons to progressively reduce their oral intake - initially abjuring solid foods and later liquids as well. Inanition is followed by lethargy, stupor, and death. The case filed in the Rajasthan High Court by Nikhil Soni and Madhav Mishra in 2006 against Santhara by 93-year-old Keila Devi Hirawat sparked off much debate. Proponents of Santhara argued that the right to life was meaningless without the corresponding right to stop living. Sanction of this practice by religion puts it under the freedoms granted by Articles 25, 26, and 29 of the Indian Constitution. I am unable to obtain a copy of the final judgment on this case. To date, I am not aware of a single person who has used this practice and was subjected to legal action.
Advance directives, living wills
An advance directive is a document prepared by a patient in full possession of his or her senses, according to his or her own free will, and without any coercion. The document provides unambiguous directives on the steps to be taken and those avoided by relatives and medical attendants on matters pertaining to health and medical treatment at a time in the future when the person becomes unable to make those decisions.
A living will is a specific advance directive instructing the physician on withholding measures aimed at prolonging life under specific circumstances, should the individual be unable to make or voice decisions. In most instances, such a will makes the medical attendant aware of the person's wishes in the event of a fatal illness with little or no prospect of recovery or after an extensive brain injury or a massive stroke that has destroyed permanently the ability to lead a meaningful life. Under such circumstances, the will states that there should be no measures aimed at prolonging existence.
A common component of a living will is the do not resuscitate (DNR) instruction. Under specified circumstances, the patient commands the physician and other medical attendants not to attempt any measure at resuscitation should there be a cardiovascular system collapse or inability to breathe. In countries where such directives and wills are recognized by law, the physician and medical institution are duty-bound to follow the instructions given to them. The wishes of family members are overruled by these directives. The law in India does not recognize advance directives or living wills.
Terminating life versus allowing a person to die
Doctors and nurses face this dilemma. Terminating life is a positive act, doing something that ends life. Speaking bluntly, it refers to an act by which the patient is killed. Here is an example: Giving progressively increasing doses of a drug intended to abolish pain to a patient with a cancer that is strangulating the nerves and causing relentless agony. Since such a dose can also depress breathing, it can kill the patient. However, the intent is relief of pain and not the termination of life. In a more aggressive form, life can be terminated by the physician by injecting a fatal drug that is permitted in countries such as the Netherlands. Such a practice is also termed "active euthanasia" by some.
When a doctor decides that a moribund person with widespread cancer should not be put on artificial breathing via a ventilator, he is following Arthur Hugh Clough's injunction, "Thou shalt not kill; but needst not strive officiously to keep alive." Such a decision gains greater validity in a small clinic where ventilators are in short supply and a particular ventilator is needed to save the life of a person with a treatable life-threatening illness such as Guillain-Barré syndrome or an overdose of barbiturates.
Another instance of refusing to "strive officiously to keep alive" is by stopping all nutrition. As in Santhara, the patient lapses into apathy, coma, and death. Such practices are grouped under "passive euthanasia." If, however, a patient with a terminal illness is put on the ventilator, stopping its use and taking off the ventilator when the patient or his/her relatives decide against it would make the doctor vulnerable to the charge of performing an act that killed the patient - an act of "active euthanasia." These distinctions are of little significance in India where any form of euthanasia is illegal. ,
My own views
I offer my personal conviction. Life is a mystery. I am not aware why I was born as a human or why I am blessed to be on this blue planet with all its grandeur and beauty. I have been immeasurably blessed and have been granted boons much above and beyond what I deserve. On a philosophical note, as emphasized by Dr. Carl Sagan, we were born of "star stuff." The elements released by the destruction of stars found their way into the cloud that was to form our earth and gave rise to life. The Biblical injunction in Genesis 3:19 - "Dust thou art and unto dust shalt thou return" - points to the continuity of life. Death has been viewed by all cultures in India as a normal and necessary event, a fitting culmination to life. We are born, we die, and are returned to the elements and these, in turn, contribute to the formation of a new life.
The scientist sees death occurring while the baby is still being conceived in the mother's womb. Countless numbers of cells die as they are superfluous to the needs of the forming organs. In the brain as well, innumerable nerve cells, connective cells, and the connections between them are destroyed as the brain matures in the uterus. After birth, there is a continuous process of dying of the cells creating different parts of the body. There is also a process of creation, new cells replacing those that are lost but on the whole, we start dying even before we are born. This is why aging organs are always less competent in performing their functions than organs in youth and we observe senility that is most prominently manifested in the brain. Indeed, the withering brain of a centenarian seen on a computerized tomographic or magnetic resonance scan is a shrunken copy of the same brain that was present in his youth. As the brain shrinks, its functions fade as was well-phrased by Shakespeare in As You Like It:
… The sixth age shifts
Into the lean and slipper'd pantaloon,
With spectacles on nose and pouch on side,
His youthful hose, well saved, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.
As a neurosurgeon and as I approach "the last scene of all," I view death as a final event and a logical termination of life. It holds no terror. Morality and ethics are to be welcomed in every act of every person on their own values and not because of any benefit they may yield. I do not believe in an afterlife or rebirth. I may live on in the memories of a few after I am dead. I hope these memories are happy.
Despite the knowledge that the law in India does not recognize living wills, I have prepared such a will and have circulated it among my colleagues who are likely to attend to me in my final illness, to members of my family, and my dear friends. I do not want my physician to strive officiously to keep me alive when such life would be a meaningless existence. In the event of a terminal illness or after severe, extensive, irreparable brain damage, I do not wish to be resuscitated if my blood pressure collapses or I stop breathing.
I have willed my organs for transplantation should I be rendered brain-dead and the rest of my body for dissection by students of anatomy in the nearest medical college. I have confidence in the goodness of my medical attendants and those around me to believe that they will honor my wishes.
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Conflicts of interest
There are no conflicts of interest.