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Sunday, May 20, 2001
Keeping fit

Facing the ultimate reality of life
By B.K. Sharma

ONE of the questions which Yudhishthira answered to get permission from Yaksha to get drinking water and revive his four brothers, was: "What is the greatest wonder in the world?" His answer was, "Every day men see living creatures depart to Yama’s abode and yet those who remain, seek to live forever. This is the greatest wonder." This answer of Yudhishthira summarises the fear and mystique of death. No wonder even doctors find it hard to freely discuss the subject with their patients and families and resort to various indirect methods and euphemisms.

Families go hush-hush when there is a dying person around and even grown up children are kept away. We do not realise that this is a part of their education in life. One of the editorials of the British Medical Journal last year started with a very provocative question: "Are you ready to die? If not, then you might begin some preparation." This is not to say that the problem has been totally ignored. Elizabeth Kubler Ross’ revealing book Death and Dying suggests convincingly that we need to be very open about death and dying and there is no point in pretending that nobody around does not know what is happening. Not discussing death only heightens tension and fear. William Caxton, the first printer of England, published a manual How to die which sold very well for a long time.

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Death is an essential component of all living beings and nobody has escaped it. In fact, this is essential for continuity of life. Edward Gibson, who wrote The Rise and Fall of the Roman Empire, states that seeds of destruction are sown inside every organism.

With the modern management of infections, diarrhoeal diseases, immunisation, public health measures and technology, the average life span has gone up to 83-84 in some countries. In India, life expectancy has reached 65 years. That means there will be more older people. It does not imply that the experience of death and dying is limited to older persons, though it is obviously nearer at that age. This blessing of science and technology is not without its flip side. Life can be sustained or prolonged with the help of ventilators, pace-makers, dialysis machines, feeding tubes, urinary catheters and intravenous lines.

In fact, in the modern intensive care unit (ICU) there is usually a tube in every orifice or vein of the body. A person can hang between life and death for days, weeks, months and, in fact, for years. A mother in New York had to go to the Supreme Court of the state to let her son be released from the life-support system, which was keeping him alive for over 20 years. Permission was not granted.

A person may be unconscious or in coma with all vital organs still working. A person may have dementia (Alzheimer’s disease is the best example) with his physical systems working normally

except certain critical functions of the brain. A person may be in a vegetative state, which can be defined as: A person whose physical systems are working but he shows no behavioural evidence of awareness of life or surrounding. It usually results from brain damage due to various causes like head injury, infections and degenerated diseases. A very important legal entity has emerged, known as ‘brain dead person’. This had assumed significance because with this diagnosis carried out under strict definition, a person’s circulatory and respiratory systems are kept working with the help of various contraptions, but the brain is irreversibly dead. This is the requirement for removal of organisms for transplant with the permission of the family or prior will of the person concerned.

We should have important issues and desires stated in writing or discussed with the family and the doctors when there is still time. The "living will" is now accepted as a legal statement of the patient as to how he should be handled once he has no control over events. Jawaharlal Nehru and Winston Churchill are well-known examples of people who clearly stated what they desired. Nearer home, my teacher and mentor, P.N. Chhuttani, had left written instructions and also told me verbally what he desired.

Once a person is perceived to be in a critical state of health, a frank appraisal of the medical and physical state of the patient should be made and the possible outcome defined professionally.

The immediate family members and the medical team should make decisions in the light of any known desire of the person or in tradition of the family and religion as to what may be done, should there be resuscitation. Should there be prolongation of life with life-support systems, is there desire to donate an organ for transplantation or is autopsy desired.

I have watched people making decisions and changing them with the arrival of a relative or for some other reason. It is considered improper to talk of financial issues at that time and often decisions are dictated by emotions.

Utmost care should be taken to keep the person free from pain, suffering, emotional trauma and, above all, to keep his dignity at this very important stage of life. It is here that the staff working in ICUs need to show the finer quality of professional and ethical standards. Somebody has described a death in the ICU as a "soul-less modern death." This does not have to be so and in this respect the medical profession has great responsibilities. Utmost vigilance is needed so that there is no violation of anybody’s human rights. They need professional competence, respect for life and honesty of purpose to keep them going.

Care givers, including the family, paramedical staff, attending physicians and surgeons are also under strain and need help and appreciation.

Epicurus said: The art of living well and dying well are one. Let us practice it.

Principles of a good death

It is believed that the right to a healthy, adjusted and dignified life should include dignified death as well. A report prepared by a study group on "age, health and care" in England has summarised the principles of dignified death, which is reproduced below. There are obvious cultural and legal issues intertwined but it does convey the basics on the subject.

  • To know when death is coming, and to understand what can be expected.

  • To be able to retain control of what happens.

  • To be afforded dignity and privacy.

  • To have control over pain relief.

  • To have choice and control over where death occurs (at home or elsewhere).

  • To have access to information and expertise of whatever kind is necessary.

  • To have access to any spiritual or emotional support required.

  • To have access to hospice care in any location, not only in hospital.

  • To have control over who is present and who shares the end.

  • To be able to issue advance directives that ensure wishes are respected.

  • To have time to say goodbye, and control over other aspects of timing.

  • To be able to leave when it is time to go, and not to have life prolonged pointlessly.

 

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