Volume 9, Number 1, November 1997

A Spiritual Perspective of Personal Directives

Reinie Heydemann, B.A., M.Div.
CAPPE Specialist
Coordinator of Pastoral Services
Good Samaritan Society

The spiritual perspective is a very important component in composing and responding to personal directives, particularly health directives made in advance. The spiritual perspective is a way to broaden vision while taking responsibility in life and death decisions.

First of all it may be helpful to point out a distinction between spirituality and religion as they are not necessarily the same. Religion can be understood as formalized spirituality. While every living, breathing person is a spiritual being, not every person is religious, or practices his/her spirituality in a formalized or established religious setting.

Religion tends to provide answers to the meaning of life and death; spirituality keeps searching, lives with the question, and journeys into the answer. Religion sets out certain rules and beliefs to be followed; spirituality seeks to be respectful of various differences, values and beliefs, and seeks resolutions in partnerships, including partnership with God.

Some people reject the opportunity to make a personal directive and instead they may say "whatever will happen is God's will. No one can play God." This is a sincere statement by a religious person and must be respected, even though from an ethical/spiritual perspective this could be perceived as an excuse for not taking responsibility in a complex world, and avoiding the struggle with the dilemma of uncertainties.

"Life is sacred" is an often quoted value. Yes, very much so. However, spirituality also takes a global view. Personally, my question would be, "Is my life more sacred than the lives of a million children, who starve to death in developing countries, while I go to the local grocery store and buy exotic fruits that grow on plantations owned by multi-national companies, who deprive the natives of their land and livelihood?"

Spirituality, while guided by compassion, takes risks and always has the best interest of the individual in mind. Paternalism is challenged, and so are ready-made answers deriving from theories evolving from research. Human beings are unique individuals and may not fit into a research mode. An article in the New York Times (June 29, 1997) points this out:

Conventional wisdom holds that people die as they have lived; a crotchety old man in life will be a crotchety old man in death. Not so, say experts in end-of-life care; death can be both transforming and liberating. Dr. Halifax, Buddhist Priest, tells of a woman whose daughter was a hospice nurse. Throughout her life, the mother had adhered to strict codes of politeness and propriety. A few days before her death, she began screaming in rage and pain. As a nurse, her daughter knew that narcotics could subdue her mother's pain. But she chose to do nothing. The screaming, she believed, was her mother's way of finally expressing herself. "The screaming went for four days and four nights" Dr. Halifax said, "And about an hour before she died, she lit up, became extremely peaceful, and relaxed completely. And then she died."

"The Doctor knows best" has been, and to a large degree still is, the dominant attitude of many people in our society. This has placed physicians in a power position, which I am sure, must be a very uncomfortable place within which to find oneself. It has pushed physicians into the role of the ultimate decision-maker, who must make life/death decisions.

In the past, the patient's body spoke, we had no choice but listen. Today, the patient's body has to scream and technical medicine seems to be deaf. This deafness is reinforced to society's denial of death, as well as what could be described as idolizing of technology.

- Anne Simonds, D. Min. Thesis, 1996

For physicians, it is a horrendous dilemma, which the following true story illustrates: A man, during his earlier stage of Alzheimer's Disease had often said to his family, "I wish I could die." As the disease progressed, he exhibited very aggressive behavior when he became extremely frightened, so much so, that he had to be admitted to a hospital. There he was mostly confined to a geriatric chair. Months later when his swallowing ability became problematic, a G-tube was inserted for nutritional purposes. The patient, who had lost his ability to communicate verbally, ripped out the tube. Consequently, his hands were tied and the feeding continued. When his wife pleaded with the physician to let him die, the answer was "we are not into practicing euthanasia!" It is a struggle for the physician to balance decisions between the law and compassion, in the absence of a health directive, made in advance. Also, without these directives, the family remains disempowered.

Spirituality invites the physician, family and patient into a relationship of trust and partnership. Twenty-five years ago, my late husband was suffering from kidney failure. At that time we were living in Westlock, and his life was sustained by a home dialysis machine. One night while he was connected, he was feeling unusually uncomfortable. As far as the monitor was concerned everything was all right. In our helplessness, I telephoned the nephologist at the University Hospital in Edmonton, who had given us his home phone number. I explained the situation to him, responded to his questions, and then he said to me "I am at a loss too, but if it helps, come and see me tomorrow and we will talk." This answer gave both my husband and I a sense of trust and partnership, which calmed our anxiety. Looking back now, I see that the physician's response prepared us in a gentle way for my husband's death.

A spiritual/partnership dilemma is evidenced also in our attitude toward resources, particularly in health care. First, I believe that one negative side of universal health care is that we have developed an attitude that the 'sky is the limit.' Secondly, we have given up our responsibility for our own health and well-being. "Oh well, I will enjoy junk food today (even though nutritious food is cheaper and available), and if I have heart failure later, I can always have a transplant," and "They'd better put me on that urgent list!" A privilege turns into a right.

Thirdly, our constant move toward better and more sophisticated technology has fostered the attitude that what may not be possible today may be common practice tomorrow. People used to die of infections and pneumonia, the "friends" of the elderly and frail population. Today we give them antibiotics routinely, without questioning. But are human beings meant to live forever? We seem to have disassociated ourselves from nature, and prefer to control and conquer the environment. We have ignored a life of harmony and respect for nature. But according to nature all living beings die to make room for new life. Should we disregard the natural laws as if they do not apply to human beings?

The denial of death, fostered by high technology, refuses to see death as a natural phenomenon, a mystery to anticipate, or a journey to be shared. Death and dying are not seen as holy and sacred experiences, but are feared, and often viewed with desperation.

I see Personal Directives as an important step for Albertans. Personal Directives allow us to converse about dying, to share our thoughts and feelings about death, and to take responsibility for very essential life/death decisions at a time when we are fully capable and in the midst of life itself. Personal Directives will relieve our physicians of single-handed responsibilities. They will foster partnerships between family members and health care providers, so that we can walk more comfortably into the future.

The use of Personal Directives is about making choices. It is our responsibility to make wise choices.