Hospice Patients Alliance: Consumer Advocacy


It is natural for all of us to wish to live as long as possible. We might think that nobody ever wants life to end, or that we could ever want our lives to end. However, as our life situation changes, our ability to enjoy life may decline. At some point, as we come closer to death, health declines, energy declines, involvement in the world around us declines and in many cases, unpleasant experiences such as pain, helplessness and mental or physical deterioration increase. It is one thing to gleefully enjoy life when one's energy level is high and all one's faculties are fully intact. It is quite another thing to enjoy life even when in extreme pain, unable to physically do anything, and physically or mentally deteriorating. Watching our loved one in such a condition is perhaps the most difficult experience of all!

How many of us would wish to live long lives if we could not enjoy the "pleasures" of life, could not contribute to society or our families, could not "give back" to others, but could only receive assistance and care from others? It is easy to "talk," but it is more meaningful to walk in another's shoes for one hour or one day, than to "philosophize" about what you would do if you were in the same situation. Many people become "ready to die" when their health fails seriously and they can no longer participate in the activities they once loved. Very elderly persons may complain about pain, loss of vision, food no longer appealing to them, loss of energy and depression.

How we navigate the challenges of life and how we change to accommodate those changes which come to all of us, depends to a great extent upon our philosophy of life, our beliefs about the purpose and meaning of life and the religious views we hold or do not hold. Even if we live long lives, there often comes a point where there is a "readiness" to die. Why? Because life no longer appears fulfilling or meaningful, or for those who believe in a spiritual life beyond death, because of a hoped for entrance into heaven and reunion with loved ones.

Sure, if we could have the health we had when we were younger, or "if we could return to the days when our friends and loved ones were still alive," or "if things were different,"....then maybe we'd reconsider. But we don't always get to choose what happens to us or our loved ones. Life happens to us. In some situations, we make some choices which may affect our health, but in many instances, diseases attack our bodies for no apparent reason. Perhaps environmental pollutants cause cancer, or we are exposed to a fatal disease through no fault of our own, or genetically we are predisposed to a certain disease. There is not much we can do to change these tragedies, even though medical science may be researching how to conquer these diseases and even prevent them from occurring at all.

Some of you may find it hard to understand why anyone might wish to "let go," even when a terminally ill disease strikes. You may believe that "life is sacred." Yet there is a saying that there is a time to be born and a time to die; it's simply a part of life which must be accepted, sooner or later, for everyone. Even if life is sacred, death is also sacred, and everyone has their own appointed time of death, their own destiny. The process of death can be horribly painful, full of grief and sorrow...or it can be inspiring, peaceful and accepted in an atmosphere if great love. That may be incomprehensible to some, but many hospice nurses do their work, because of it; to honor and respect the living while they are with us, and to allow the dying dignity, peace and comfort.

Certainly, a part of us wishes to deny death its inevitability, to fight and never surrender. "Fighting the good fight" is admirable and worth attempting. Eventually though, death comes to all, and this is not necessarily a defeat or "depressing." It simply is the truth. Extending life when a person's will to live is lacking does not make sense. Even though the "will to live" is the strongest instinct we have, those of us who have sat at the side of numerous dying patients know that there comes a time when a person is convinced that it is their time to go. And even though not all dying persons accept death willingly, even at the very end, most do accept it and make peace with its inevitability.

Declining Level of Consciousness

When a person's level of consciousness is severely compromised, the quality of life issue becomes even more pronounced. What is "level of consciousness?" It is how aware one is of one's surroundings, how alert one is, how responsive one is.... If a person responds to questions, sound or touch in a meaningful way, we can conclude that they are alert and aware, especially if they can still speak to us or open their eyes and move them to follow us as we move around them. As death approaches, the level of consciousness often (but not always) declines so that the person no longer responds in any way. First, the person may become very sleepy, and then actually fall into a sleep from which they may be aroused, and eventually, they may sleep and not be arousable. Even if presented with loud speech or strong touch or movements, a person who is "asleep" at this deep level will not respond; this is what is called a "coma."

Within the realm of unresponsiveness in persons who are asleep, there are variations as well. One person may have inner awareness, but be unable to respond, talk or indicate in any way that they are aware of what is going on around them. Others may be unaware of their surroundings and quite "unconscious." In other cases where severe brain damage has occurred, there may be no possibility of conscious awareness of their surroundings...the level of consciousness is not there at all.

When level of consciousness declines, most people feel and think that the "quality of life" has declined with it. Under those circumstances, there are intense debates about the meaning of continuing to live and whether or not it is desirable. This is where numerous points of view arise and we cannot generalize and state with certainty what anyone would want. The standards of care in our health care industry require us to respect the individual patient's wishes and not to impose our own.

Modern medical science is capable of keeping the body "alive" with artificial respiration and heart bypass machines, but merely keeping the cells of the body alive when there is no consciousness, no brain function is not "life" as we know it. When the quality of life has declined beyond any meaningful point, many choose to let go and not take any measures to treat life-threatening changes; they refrain from efforts to resuscitate the patient and do not put the patient on artificial life-support such as a ventilator for artificial breathing and heart bypass machine for artificial circulation of the blood; they accept death knowing that the time has come. Hospice care is about improving the quality of life as much as possible, but it does not take action to artificially prolong life in most situations.

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