Dr. M.R Rajagopal, Chairman, Pallium India, delves into the ethical dilemmas surrounding end-of-life decisions, the fundamental right to live with dignity and quality of life. Palliative care should be made available to every person who needs it. An interview with PatientsEngage.
PE: The role of medicine is extension of life. So shouldn't all efforts be made to extend life of a patient under any and every circumstance?
The primary function of a medical system is to help a person stay healthy for as long as possible. The doctor should also remember that death is inevitable. It is the natural consequence of life. At some point of time, everyone has to die.
When death is inevitable, and reasonable quality of life cannot be restored, the duty of the doctor is to make the process as comfortable as possible. In other words, we shall be working against the interest of the patient if we prolong a life that is worse than death.
From the 14th century, doctors have believed that the duty of a doctor is to “cure sometimes, to relieve often and to comfort always”. Unreasonable attempts at artificial life support just to keep the heart beating should not be the function of medical system, especially when it causes suffering to the patient and family.
PE: Can you give us some examples of withholding and withdrawing life support?
Let us take three examples of advanced disease where treatment is unlikely to be beneficial for the patient:
- Someone with advanced cancer where there are no longer curative options and where the condition is steadily deteriorating.
- Someone with a progressive neurological disease for which medicine has no cure to offer and who will gradually develop paralysis of the muscles. This person may live without any muscular effort on a ventilator for some time - maybe weeks or months; but will not even be able to convey what his suffering is.
- An elderly person at the end of his life with no disease other than the debility of age.
In all the above cases, it may be possible to prolong the heart beat for a variable period of time with intensive care including artificial ventilator (typically in an ICU). But such extension will be of such poor quality and will be associated with significant suffering as well as isolation from the family. In such cases withholding artificial life support is in the interest of the patient.
The question of withdrawing life support arises, as for example, when the patient is already in an intensive care unit on artificial life support and the heart is kept beating purely because of artificial ventilation. Here also, if the person is conscious, the process is clearly associated with suffering. If the person is apparently unconscious, we are still not sure that there is no suffering because the possibility of there being cognition with inability to express. In addition, there is a question of cost and financial destruction of the family.
PE: When is withholding life support in the interest of the patient and when is it not?
A fundamental principle of medical ethics is autonomy. That means, the person is master of himself, and no one including the family or the doctor has more right over him than himself. His wishes are paramount, though they will be limited by the law of the land.
When my time comes and my disease cannot be cured and when it is clear to everyone including me that I am dying, I would wish to be with my family. I would consider it a violation of my right, to my autonomy, to incarcerate me in a cold intensive care unit where my loved ones are not allowed to see me except for five minutes in the morning and evening and even during which time they would be afraid to touch me because of all the cables and contraptions. I would consider such a treatment, a violation of my fundamental right to live with dignity.
However, there could be circumstances when I may want my life prolonged. I remember the case of one my patients with advanced cancer who wanted to be kept alive till her son returned home. She could afford it and her wishes paramount, and we respected them. In such cases, respecting that person’s decision is also the duty of medical profession.
PE: What should a family caregiver keep in mind while making such decisions?
Even in the absence of a written advanced medical directive, if the person had at some point of time expressed a specific wish, that should be respected. For example, if the person had at some point time said that, in the context of incurable disease, he should be allowed to die at home, the family should try their best to satisfy that desire, provided comfort care can be given at home and adequate support by a palliative care team is made available.
But very often, such a written or verbal expression of desire may not have been made to the family caregiver. In such a situation, it is very natural for the family caregiver to think that he or she has the responsibility to keep the person alive at all costs. He may also be unwilling to accept that a loved one is dying and this can also contribute to his desire for prolongation of life by artificial means.
What I would advise such a family caregiver to do is to think from the patient’s point of view, putting himself in that person’s shoes. If he were that patient, what would he want?
PE: What are the issues involved in withdrawing life support once the patient is already on life support?
The major problem is that India does not have a law covering end of life care or withdrawal of life support. Such legislation is contemplated. In fact, in 2015 the Supreme Court had practically asked for such legislation and, in 2016, the Government of India published a draft of such a law on its website. Unfortunately, this was an unacceptable document, often contradictory in itself in various places. Our organization, Pallium India, was among the numerous responders pointing out the problems with the draft law. We had submitted an alternative draft for the Government’s consideration. Hopefully, a rational law would be made.
In the absence of clear legislation on the matter, and in the face of conflicting court decisions in the past, we still have the guidelines of a statutory body, the Medical Council of India to guide us in the matter. A 2003 guideline from the Medical Council of India laid down the procedures for withholding and withdrawing of artificial life support in the context of futility of treatment. The Indian Society of Critical Care Medicine, Indian Academy of Neurology and the Indian Association of Palliative Care also have together given guidelines on the matter which can be followed.
PE: What should decisions makers keep in mind?
The decision makers in this case would be the patient himself, or if he is incompetent to take a decision, the next of kin supported by the family. The medical system, particularly the treating doctor is also a decision maker in this instance. The important thing to remember: The decision must be in the best interest of the patient.
It is also important for the doctor to get a second opinion. The decision on withholding or withdrawing life support should be a joint decision. In fact, the Medical Council of India recommends that at least three doctors should be involved in the process.
There can still be some situations where two or three doctors may not agree on the right course or all the family members may not agree either, and in such a situation, the ideal thing to do would be for an ethical committee in the institution to take the matter up urgently. Unfortunately, the majority of medical institutions in our country do not have such a body to take quick action on the matter.
It is also very important not to expect instantaneous decisions from the family. End-of-life decisions are vital matters on which the family members will need time to think. It is also very important for the family members to be given adequate information and the necessary counseling so that the decisions can be based more on reason rather than emotion.
PE: What hinders decisions makers the most?
In addition to absence of clear legislation on the matter, the biggest barrier is the medical system itself which often has a mistaken impression that it has a duty to keep the heart beating at all costs. This is a fairly recent phenomenon, particularly in the last half a century when technological advances made it possible for such meaningless prolongation of life even at the cost of more suffering to patient and family.
There is also significant confusion in the minds of both professionals and the public that withholding or withdrawal of life support in the context of futility of treatment might be euthanasia. This is a misunderstanding. Euthanasia involves a deliberate intention and act to end life. Withholding or withdrawing of life support has no such intention. It is only permitting natural death.
However, some recent court decisions and many doctors’ misunderstanding keep feeding in to the mistaken impression that withholding or withdrawing life support would be passive euthanasia. This is a misnomer.
In an attempt to bring clarity to the matter, the Indian Council of Medical Research is currently in the process of defining the responsibility of the doctor and also defining the terminology used in that connection.
PE: How can the healthcare community, family and friends support this decision?
A rational decision is possible only if we shed the fear to think about death. Nowadays, particularly in the context of nuclear families, children do not grow up seeing death as a part of life. Death becomes a stranger. For the medical professional, especially with the modern technology, death has become the enemy to be avoided at all costs, though everyone knows that at some point of time death becomes inevitable.
There is a custom in Bhutan - everyone is expected to think about one’s own death five times a day. This realization of death as the inevitable end of life gives people the courage to think about it.
The answer to the dilemma clearly lies in more discussions in the community and medical professionals.
PE: Hospitals typically do not move the patient to a normal room and there are not many hospice care options either.
This is indeed a huge problem. Even when the person clearly expresses a wish to be with the family, hospitals seem unable or unwilling to permit this. In the presence of a falling oxygen saturation or falling sodium level in the blood, hospitals invoke "protocols" which make isolation in an intensive care unit mandatory practice.
This is clearly unethical. In anything except instantaneous death, it is inevitable that oxygen levels or sodium levels will drop. That is part of the normal dying process. Insistence on isolation in an intensive care unit has no ethical justification. The person has the moral and ethical right, if he so desires, to have the family by the side, to bid a word of farewell and to give or receive a loving kiss. The medical system which does not permit this is cold, mechanical and heartless.
At the same time, the medical system has to provide palliative care. If a person is taken off the ventilator and he is breathless for example, naturally his breathlessness has to be treated; his suffering has to be mitigated. He cannot be left to die in misery. This means, palliative care has to be available for every dying person who needs it. Unfortunately, in our country this is not happening, except for a tiny minority of the needy. Palliative care facilities are growing in number; but at too slow a pace.
PE: What is necessary for quick implementation of Integration of Palliative care into Health care education and Health care Practice?
The current Health Policy of Government of India does mention palliative care as a need. It is necessary to translate this policy into an action plan. Certainly, reform of the medical education integrating palliative care in medical and nursing education is also vitally important in this context.
Dr Rajagopal is the director of the WHO Collaborating Center at Trivandrum, Kerala for Policy and Training on Access to Pain Relief and the founder-chairman of “Pallium India".
His initiatives to remove regulatory barriers in availability of oral morphine for pain relief have contributed significantly to the recent Amendment of the NDPS Act of India in 2014. His initiative has also contributed to the development of Government of India's National Palliative Care Strategy in 2012. The international organization “Human Rights Watch” honored him with Alison Des Forges award at Los Angeles on 11 November 2014 for "Extraordinary activism in promoting the notion that denial of pain relief is a violation of human rights".
