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Facing the Anxiety of Death: Prolonged Illness Ending in Death
A five-year-old boy, unconscious, groans in a hospital bed as his life drains away through internal bleeding. Doctors and other medical personnel have done all they know to do to stop the bleeding, they have taken blood tests, given blood transfusions, administered medications to keep the young boy from dying of leukemia.

A Young Boy Dies

After numerous consultations between the attending doctors and the boy's parents, a decision is made to stop the blood transfusions and life-prolonging medications. To continue these measures would just prolong the agony of the boy's inevitable death. Only pain relief medication will be given. The boy is expected to die quickly. He is moved into a private room.

Day after day the young boy hovers between life and death. His groans grow louder, while his parents, anguished, sit beside their son's bed. I am one of the nurses working on that floor. Nursing and medical staff moves in and out, administer pain relief medication, bathe him, massage the boy's back, change his position in bed, change his sheets. At times we stay in the room, silent, unable to relieve the parents' grief. After an eternity, the boy's groans cease; he stops breathing, his skin grows cold and ashen. The boy dies at last, yet much too soon.

Since the death of that little boy, I have changed vocations. Questions about death that I was forced to face as a nurse, I still face today in my profession as a marriage and family therapist. I know by experience what it means to be a bereaved parent; our first-born son died suddenly just over four years ago, at 26 years of age. What wisdom can I bring at this stage of my life as I listen to stories of anguish from people who come to me for help—while a loved one dies slowly or when grief lingers long after a dear one has died?

In our technologically sophisticated age, when specialization and prolonging of life is highly valued, death is too easily interpreted as a medical failure.

When someone suffers from a medically incurable illness, who has the responsibility to decide the appropriate time to die? Does the dying person choose? Yes, seems the obvious and honourable response. Some situations are not so clear. What about the young boy who died of leukemia in the story just cited? Could he choose his time and way to die? Surely he would have wanted to live. Did the doctors and parents have the boy's best interests in mind as well as their own interests when they decided to withdraw life-prolonging treatment?

What about people in a prolonged coma, of any age, who keep breathing only because life support systems keep them alive; should they be kept alive indefinitely? At what point is a person dead: when one's brain stops functioning, but the person can still breathe? What about an aging person who longs for death's release and has said so? Do any of us have the right to prolong that person's life when debilitating illness strikes?

In this brief article, I do not pretend to give easy solutions. In our technologically sophisticated age, when specialization and prolonging of life is highly valued, and death is too easily interpreted as a medical failure. I am concerned that we may lose perspective of what kinds of support are most important for all concerned, especially for the one who is dying.

Ethical and Legal Perspective

I attended the ninth international conference on Death and Dying at King's College, London, Ontario. One of the keynote speakers, Dr. Edward W. Keyserlingk, a member of the McGill Centre for Medicine, Law and Ethics, spoke about "Relating the Right to Die and the Need to Bereave: An Ethical and Legal Perspective." Keyserlingk pointed out that in our age of medical sophistication, we readily allow medical technology to take priority over human caring. We attempt heroic medicine by treating the patent with every possible means, even when no possibility of recovery exists.

Keyserlingk referred to patients who have suffered extensive brain damage, who still breathe, whose blood circulates, but who are irreversibly comatose. Support technology can keep them alive for years, but they remain in a persistent vegetative state. Prolonging this kind of existence is not in the best interests of the patient, family, or friends.

Anticipatory grief (grieving before the person dies) is highly significant from the time of knowing a loved one will die to the time of actual death. Family members begin to mourn the loss of one who was healthy: they mourn the future they had planned, especially if the dying person is relatively young. The family's grief continues unresolved and prolonged as long as the patient remains alive.

Keyserlingk pointed out he importance of acknowledging limits of medical technology. We put too much reliance on life support systems; it is hard to stop them once we've started using them. We need to recognize the difference between euthanasia (killing) and letting go. The two are not the same. At times physicians offer choices that don't exist, giving false hope to the families of the dying. At other times, families do not want to listen to the bad news directly and clearly given by the physician. The patient's best interest must be the bottom line in any decision that is made about treatment.

Some people resort to living wills, stated Keyserlingk. Those wills are really requests to say, "don't take an aggressive medical approach if it won't do any good." It is sad that people feel the need to resort to living wills in their desire for good medical attention. The biggest fear families have is that if heroic medical means are not used, the patient will not have adequate care. That need not be true. When no hope of recovery seems possible, proper palliative care can be given, whether at home, in a hospital, or in a hospice.

A Hospital Death

A Globe and Mail article (September 12, 1991) tells the story of three sisters who were asked by the doctors to make a difficult decision about whether or not to withdraw life support systems from their mother who was in a coma with extensive brain damage. As the sisters agonized, they faced their reluctance to say good-bye to the "most selfless person" they had known. At the same time they could not ignore their mother's recent injunction that if anything happened to her, she did not want to be kept alive by machines. The sisters decided to have the feeding tube disconnected, and nine days later their mother died. They still wonder if they made the right decision.

A Home Death

Since the end of July of this year, close friends of ours had their aunt, with terminal cancer, living in their home. The aunt slept in the living room, where she could be readily watched. Our friends' three young children witnessed their great aunt deteriorate from a vibrant, elderly woman, to one wasting away, as their parents cared for this special member of their extended family.

The parents had ready access to a palliative care doctor, nursing care, and whatever other support they needed. One day, their six-year-old son gave his great aunt eight pennies; he said he could give her more if she needed them.

My friend called us late in the afternoon of September 19th: "Aunt Mary died at 2 P.M. today," my friend said. "I was at her bedside when she died in a coma; the children saw her body. It was taken away ten minutes ago. Then it really hit me, she's gone." I talked with my friends yesterday, September 22nd. They are exhausted and relieved. I am honoured to be invited into their grief, for they have journeyed with our family, through our grief, after the death of our son.

Compassionate Support in Therapy How can I, along with my colleagues here at the Institute of Family Living, support people who come to us for help as they face the prolonged illness and death of a loved one? Our desire is to be compassionate, to offer a safe place for people to express their fears, and to listen without judgment. To be invited into someone's grief, to pay attention to agonizing questions about death, and about whether or not God is present as one's loved on deteriorates, is an honour. We pray that we may be enabled to walk alongside those who come to us for support, that they may sense they are not alone as they journey through the valley of death's shadow.

Used with permission, Institute of Family Living, 120 Eglington Ave. East, Suite 700, Toronto, Ontario M4P 1E2,




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