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Terminal Patient: A Legal myth A Medical Dilemma

A patient to be legally recognized as terminal should meet the following criteria:
  1. Should be suffering from a disease that has no curative treatment available
  2. The disease is irreversible
  3. The disease is causing suffering and misery
  4. Death is inevitable and imminent (within six months)

The definition was evolved to legalize termination of such patient to relieve him/her of pain and suffering. The case before the court was of a semiconscious lady patient, Aruna Shanbag, in a persistent vegetative state (Common Cause vs Union of India). The two issues before the Hon'ble Supreme Court were : 1. Passive euthanasia in unconscious/incompetent patient and 2. Right to opt for a dignified death by executing a living will or advance directive in a competent patient. Detailed guidelines were laid down for both.

A medical professional, however, has to treat and manage large number of terminal diseases or terminal conditions that are variants of Persistent Vegetative State (PVS). He has to tread very cautiously to avoid falling foul of legal provisions of passive euthanasia and advance directive laws. Specific conditions may be considered to appreciate the dilemma these diseases pose.
  1. End stage kidney disease. Patient's both kidneys are irreversibly damaged. Patient is in complete renal failure. Medically, his disease is terminal but his condition is not terminal, as medically he can be managed with regular dialysis to lead a long normal life. He, however, would become terminal if he is denied dialysis or if he willfully abandons it. Live donor or cadaveric kidney transplant options are also available to the patient.

    The patient is competent to decide. He has to give a written informed consent before every dialysis. If he refuses consent, the doctor cannot dialyze him. If he does not opt for kidney transplant, donor or cadaveric, his condition becomes terminal, sure to die in short time. The doctor can do nothing. It cannot or should not be equated with 'assisted suicide'.
  2. Aruna Shanbag: Persistent Vegetative State. A nurse in a leading hospital of Bombay, Aruna, was a victim of ghastly criminal act of strangulation and rape, by a fellow hospital worker. The act of strangulation left her with severe brain damage. Her higher brain centres were knocked off. Since her vital brain centres of heart, respiration etc were intact she remained alive but incapable of any voluntary movements.

    Damage to higher centres rendered her unresponsive. The damage was beyond treatment and irreversible. Her disease was terminal but her condition was not terminal. She needed no advance life support measure to survive, but being incapacitated and bed ridden she needed constant nursing care.

    With the loving expert care of her fellow sisters she could survive for over two decades. This was the medical perception and management of the case. At this stage a journalist took pity on her, on legal grounds of futile miserable life. She approached the Court for directions to terminate the 'miserable' life of the patient (Mercy killing/Euthanasia).

    Legally it was presented to be an unconscious, comatose, terminally ill patient in great 'suffering and misery'. When referred to medical experts it was revealed that she was not comatose, she was conscious but minimally responsive. It was opined that she was not terminal in the sense that death was not imminent. Also that she was not in acute pain or suffering. She was in persistent vegetative state (PVS). The nurses were happy to continue to care. The nurses asserted that they will not stop feeding her and starve her to a miserable death. It is no mercy.

    The Hob'ble court declined to pass an order to terminate the patient's life, in the light of medical perception of the case. Futility of life is a concept contrary to the basic tenets of medical profession.
  3. Locked-in syndrome: Patient fully conscious but incapable of any voluntary activity. Locked-in syndrome is a rare disorder of the nervous system, the patient, sort of , locked inside his own body. People with locked-in syndrome are: Paralyzed except for the muscles that control eye movement. Conscious (aware) and can think and reason, but cannot move or speak; although they may be able to communicate with blinking eye movements.

    It is a result of simple treatment of rehydrating a grossly dehydrated patient, as in severe vomiting and diarrhea, for no reason, in exceptionally rare cases. A peculiar localized damage occurs at the level of pons in the brain. Nerve tracts carrying sensation to the brain, and conveying orders from the brain are damaged. Since higher part of brain is intact the patient is fully conscious, able to think and logic.

    Sense of sight, smell, hearing and taste are intact. But since the orders from brain can not go across the lesion, the patient cannot communicate or respond. He is paralyzed, lies in bed like a person in vegetative state. He can communicate his feelings through the movements of eye lids and eye balls.

    It is extremely difficult for the emotionally charged relatives, or even the lay judiciary, to accept the medical perception and explanation that simple administration of fluids caused irreversible damage to brain.

    The patient is conscious, can think, reason and decide; his life cannot be terminated without his consent. He will consent or deny by movements of his eyes.

    Terminating life would be extremely painful unless the patient is first rendered unconscious.
  4. Ascending paralysis or Guillain Barre Syndrome. This is, a not so infrequent, disease entity in which a patient is paralyzed and is on ventilator, but neither his disease nor its stage is terminal. This is an ascending paralyzing viral (?) infection of spinal cord that, on reaching the cervical part of the cord, where respiratory centres are located, leads to paralysis of respiration. Patient has to be put on ventilator to survive.

    The condition is auto reversible. However, when it would occur is unpredictable. Patient would need ventilation, in some cases for months even, till the disease spontaneously reverses. There is not treatment available to reverse the disease process.

    Since the disease is reversible, Not Terminal, and ventilator keeps the patient alive, it cannot be called futile at any stage, and turned off, even with the express request of the parents or surrogates. The peculiarity of this condition is that it is not terminal and the patient is conscious and happy. If the patient's relatives are not able to pay for ventilator, who would shoulder the bill? is a moot question. But you cannot kill such a patient by withdrawing ventilator - it would be murder.
  5. Withholding and withdrawing mechanical ventilator: Legal prescriptions and medical dilemma. A patient not maintaining adequate oxygen saturation, even on 100 percent pure oxygen administration, has to be put on mechanical ventilation. This is independent of the treatment of basic disease that the patient was suffering from. The disease may or may not be terminal. A ventilator substitutes lungs and provides artificial (mechanical) respiration. Since, not putting such patient on ventilator is likely to cause brain damage and death, the stage of the patient is considered 'critical' or 'terminal'.

    The prescribed procedure for putting a person on mechanical ventilator is to obtain an informed consent from the attendants. In case the consent is denied, the doctor has to withhold the ventilator, and continue to maintain the patient on oxygen therapy. Ventilators are now freely, rather universally, available across the hospitals, after the covid pandemic. The relatives frequently refuse mechanical ventilation in advanced age with an end-stage disease of lungs, heart, brain or cancers.

    The elaborate legal procedure prescribed for withholding life support measures, in terminal patients, is impracticable in every day ICU care. This, however, poses a dilemma for the doctor. In case, later, the relatives allege negligence and call it an assisted suicide.

    Withdrawing life support in brain dead patient. In case consent is given, the patient is put on ventilator. In case of inherent lung damage or circulatory collapse, oxygen supply, primarily to brain, is not maintained. The brain is irreversibly damaged. The hospital protocol is to refer the patient to a neurologist. The neurologist assesses the brain damage and documents it in the record.

    He repeats it as often as required and finally satisfied of irreversible brain damage, pronounces him brain dead or brain stem death. The patient is dead but his organs are not. The organs survive as the heart continues to beat and maintain circulation. In case the hospital is approved for organ harvesting and cadaveric organ transplant, the Human Organ Transplant Act comes into play.

    The stipulated team of experts visits the patient, performs all the tests prescribed, confirms that no brain stem reflexes are present, documents their results, disconnects the ventilator, keeps the patient on oxygen support and watch if the patient shows signs of spontaneous respiration, if not the patient is reconnected to ventilator. This is known as apnea test.

    The team pronounces the patient brain dead and communicates it to the relatives. A team of counselors visits and tries to persuade the relatives to agree to organ donation. The expert team revisits, conducts the tests and confirms brain death. In case the relatives agree for organ transplant, patient's organs are harvested (removed) and patient's ventilator switched off.

    In case the hospital is not approved for cadaveric organ transplant, and the expert team stipulated in Organ Transplant Act is not available for certification of brain death, what protocol is to be followed is not available. The prescribed elaborate legal procedure is not practicable. The doctors, in such situation, do withdraw the ventilator and allow the disease to take a natural course.

    A futile care law, as enacted in several countries, is needed.

    The narrow legal construction of terminal patients notwithstanding, the Medical Council should provide case specific protocols.
  6. A beyond treatment cancer patient. A patient of breast cancer, who has undergone surgical removal, radiotherapy and chemotherapy, gets a recurrence that involves nerve plexus. It is extremely painful. With modern pain killer drug management, the patient gets pain free periods. During such periods of remission, the patient is normal, eating, drinking, walking, chatting and indulging in activities of her choice, till the pain returns.

    For part of this remission period she would be peacefully sleeping. With progress of cancer these periods of pain remission would become shorter and shorter, and the pain more agonizing. It is during these short periods of agonizing pain that the patient often asks for death, though not really meaning it. These patients are very vulnerable at the hands of 'mercy killing' or 'passive euthanasia' enthusiasts.

Life support in terminal cancer patient. In terminal cancers, where the patient has exhausted all treatment modalities, mechanical ventilation should be expressly prohibited when he finally arrests.

Written By: Dr.Shri Gopal Kabra
MBBS, LLB, MSc, MS (Antatomy), MS(Surgery)
15, Vijay Nagar, D-bloc, Malviya Nagar, Jaipur-302017
Mobile: 8003516198

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