closed_eyes

Talking about the deeper meaning of life and death is still a taboo in American culture. Even today, we still feel uncomfortable and awkward talking about these kinds of issues. Sex, increasingly more explicitly shown in our society, has been lost long ago as a taboo, as we have been revealed as a nation of secret voyeurs. Sex is no longer a taboo subject. In fact, no topic is held back from public display and discussion, except death. Death is something we want to forget about. A 1991 Gallup poll showed that Americans almost never think of death, or think of it only occasionally.

Children are shielded from it at a personal level, though ironically, they are exposed by the media to its most violent aspects. Arnold Toynbee, in 1973, noted that in our society “death is considered un-American, an affront to every citizen’s right to life, liberty, and the pursuit of happiness.” We live in a culture that extols rugged individualism and a philosophy of life that says that you can accomplish anything you set your mind to. And we infer that includes beating out death. It is little wonder then, that people are unprepared when an illness, like cancer, strikes with its potential threat of death. The result is a crisis of great proportions. One must confront not only biological death, but squarely what it means not to be alive. Some struggle with the inability to imagine they could die, despite the intellectual awareness that their illness is not curable.

“What does it mean not to be?” “What is death?” “What does it mean to me?” These questions frame the existential crisis we all must face at some time. We all must deal with the human side of illness when death is the inevitable outcome. Treatment changes at this stage, from control of disease to treatment aimed at comfort, relief from pain and suffering, and maximal quality of life despite illness.

Dr. Jared Kass, of Lesley College, has cast this existential reality in a helpful light by calling it a crisis of meaning. This concept comes from the work of Viktor Frankl, the Viennese psychiatrist who wrote about the deeply human need to find meaning in life. Facing illness at an advanced stage creates a need to try to make some sense out of what is happening, to establish some coherence, which means to give it some meaning, to try to “get things back under control” as events tumble out of control. Daniel Callahan, Ph.D., eminent ethicist and author of The Troubled Dream of Life, feels that much of our present obsession about “death with dignity” is really a veiled attempt to control dying. What we are actually doing is finding ways to avoid the real issue, the meaning of death itself. Death is still unthinkable and unspeakable.

Another aspect of illness that leads one to search for meaning is the sense of utter helplessness. “I feel so totally helpless in the face of this illness,” people with advanced disease frequently say. Some people, aware of their personal helplessness, reach out for something stronger, more powerful that the “self”. This leads many to recall the old belief systems that provided solace and a sense of a connection to some more powerful figure, like God. The crisis of meaning is diminished by the ability to find some coherence, meaning, and connection to some greater whole than oneself. This is where the psychological and spiritual meet in the care of patients near the end of life.

In palliative care (care aimed at providing comfort and not focused on cure of disease), the crisis of meaning is embedded within four issues, broadly referred to as the pain and suffering associated with illness. They are:

  • The physical: The experience of pain or other troublesome bodily symptoms.
  • The psychological: The emotional confrontation with your own death.
  • The social: Facing separation from those you love most in life.
  • The spiritual: The need to reach out to a stronger, more powerful force beyond the self, to a transcendent presence or connectedness.

bent-glasses-guy

The Book of Job is probably our best source for understanding this type of pain and suffering, as Rabbi Harold Kushner points out in his book, When Bad Things Happen to Good People. Job goes through overwhelming suffering with the loss of his family, his livelihood, and his health, as painful sores cover his body. The world’s great religions all offer principles for dealing with suffering. Religious beliefs enhance coping by promoting a feeling of control and calmness despite the uncertainty, the threat of death, the frightening unknown, and the loss of all that is dear. They also provide a set of moral values and a model for behavior during periods of suffering. Prayer and meditation offer solace and comfort, and are available as a way to reach out at will to a higher power. What is important is an explicit existential perspective: a concept of life and death, of life after death, and of connection to a larger whole.

These concepts relate to a broad spiritual outlook. For some, this may be more philosophical than religious, but whatever the source, it yields meaning. The point is that we all have some well-honed beliefs, perhaps not well articulated, but nevertheless there to be called on during a crisis of meaning. Having a strong belief system and ties to others who share it, gives you a leg up on the situation. Others have to struggle to find their own way. Callahan noted in 1995: “The meaning of death is…relegated to the privacy of religious beliefs or, in their absence, whatever personal resources people can bring to

[it] on their own.” You are pretty much on your own, since our society doesn’t offer any “built-ins” to make it easier to talk with others to help find our own way.

This is when those who offer counseling can help you tap into your own resources. The purpose of counseling is not to say, “I have this great belief system to give you,” but rather to assist people in sorting out their own beliefs that can help. Viktor Frankl wrote: “The psychiatrist cannot show the patient what that meaning is, but he may well show him that there is a meaning, and that it remains meaningful under any