4 From a frying pan into the fire

The Stag and the Lion: A Stag was chased by hounds, and took refuge in a cave, where he hoped to be safe. Unfortunately, the cave housed a Lion, to whom he fell an easy prey. "How unlucky am I," he cried, "I am saved from the dogs only to fall into the clutches of a Lion."

A 50 year old man had a muscle wasting disease (muscular dystrophy) for ten years. Presently he was so weak that he could hardly breathe. He demanded and got into an intensive care service where he was connected to a breathing machine (mechanical respirator) through an external opening into his wind pipe. He was now voiceless and powerless. "How awful," he thought, "I am saved from the misery of breathlessness only to lose my voice and fall into the clutches of this miserable machine."

Comments

Patients with chronic and inexorably worsening diseases would eventually reach a stage of needing life support by artificial means. Dialysis and artificial respiration are two such examples. There are many more ways of jumping from the frying pan into the fire and wonder if you are extending life or merely prolonging death!

The ideal way of approaching such a problem is by creative problem solving (see Chapter35). Lesser mortals have to ask the following questions:

1. How will my disease reach its end stage?

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2. What are the difficulties I may have then? 3. Am I likely to be mentally deficient or in coma? 4. Will I need any long term treatment to prolong my life (e.g., respirator)? 5. How will it (respirator, dialyser, etc.) affect my quality of life? 6. If I undergo such treatment, am I likely to recover? 7. Will aggressive options really extend my life or merely prolong the dying process?

Complex treatment options and high-tech medicine are often 'half way technologies'. Like moths attracted to flame, care seekers accept these options to prolong their lives. Many of them live with smouldering diseases and disabilities as examples of "failures of successes" (Silverman WA, 1995). Visit any tertiary care hospital and you will see many such failed successes who hover between life and death for long periods. Most deaths in a tertiary care hospital setting are orchestrated events because, the dividing line between life and death is blurred.

At times, the relatives of a seriously ill patient have to take decisions on continuing artificial life support and on donating organs for transplant surgery. The following questions may be discussed with the doctors:

 What has happened to him/her?  How serious is the condition?  Is he/she in pain?  Is he/she in coma? Is the coma reversible? How long will it take?  Is he/she brain-dead? When will you know?  Does he/she on life support (like respirator)? Can it be ever weaned off?  If he/she recovers, what is the likely residual damage?  What would you advise at this point?  Would you be kind enough to tell us what decision you would take if your friend or relative (God forbid!) was in a similar condition?  Should we get other opinions or consult any other specialist?

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You should understand the following terms when discussing death and dying.

Physical death: Cessation of all biological activities including those of the heart and the lungs. This is traditional definition of death.

Brain death: Irreversible cessation of the functions of the entire brain. Artificial life support is needed to keep the heart and other organs functioning. Survival beyond a few days is unusual but may go on for up to six weeks. This is also a form of death but the main difference is that the organs of a brain dead person can be harvested for transplantation. Unethical care providers may give false hope to the relatives ofa brain dead person and continue futile and ruinously expensive intensive care just to keep their beds occupied and generate income.

Persistent vegetative state: Permanent loss of consciousness due to irreversible cessation of higher mental functions like consciousness, experience of pain etc. The person may have sleep-wake cycle that may give a false hope to the near and dear. With good nursing care, such an individual may survive for many months or years. Young females in vegetative state have conceived and given birth to babies without ever being aware of it. With a good nursing care, managing cases in vegetative state is possible even at home or a hospice.

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