Abigail Rian Evans here examines the medical, ethical, theological, pastoral, and legal issues surrounding death and dying from a Christian perspective. Her work is informed by insights from patients, their families, and health care staff and results in a book that will ably assist professionals, patients, and their families in making difficult end-of-life decisions.
|Publisher:||Eerdmans, William B. Publishing Company|
|Product dimensions:||6.00(w) x 8.90(h) x 1.30(d)|
About the Author
Abigail Rian Evans is scholar-in-residence at the Center for Clinical Bioethics at Georgetown University Medical Center and Charlotte W. Newcombe Professor of Practical Theology Emerita at Princeton Theological Seminary. Her other books include Redeeming
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Is God Still at the Bedside?THE MEDICAL, ETHICAL, AND PASTORAL ISSUES OF DEATH AND DYING
By Abigail Rian Evans
William B. Eerdmans Publishing CompanyCopyright © 2011 Abigail Rian Evans
All right reserved.
Chapter OneReflections on Human Life
LIFE, believe, is not a dream
So dark as sages say;
Oft a little morning rain
Foretells a pleasant day.
Sometimes there are clouds of gloom,
But these are transient all;
If the shower will make the roses bloom,
O why lament its fall?
Life's sunny hours flit by,
Enjoy them as they fly!
What though Death at times steps in,
And calls our Best away?
What though sorrow seems to win,
O'er hope, a heavy sway?
Yet Hope again elastic springs,
Unconquered, though she fell;
Still buoyant are her golden wings,
Still strong to bear us well.
The day of trial bear,
For gloriously, victoriously,
Can courage quell despair!
Charlotte Brontë (1816-1855)
Before we address the topic of death, we need to reflect on life. Some say the specter of death gives life its meaning. William Coffin in Credo wrote the following: "Without death, we'd never live. Without discovering the limits of our talents, we'd never discover who we are. And, finally, hard choices have a potential for riches beyond any reckoning, 'for eye hath not seen nor ear heard nor the heart of man perceived the good things that God hath prepared for those who love him.'" Authors such as Dorothee Sölle write that we learn about death through the death of another. "The great use of life is to spend it for something that outlasts it." For the Christian, what outlasts our physical life is love of God and others; that is, our view of life is from the perspective of eternity.
Perspectives on Life
We will examine three general perspectives on life: vitalism, instrumentalism, and conditionalism. Vitalism is the belief that pure biological human life is a good no matter what the quality. Life has value in all its forms —animal, vegetable, or human. From a theological perspective, life's value stems from its being created by God. However, physical life is not an absolute value, but a primary one. One may be called to sacrifice one's own life to save the life of another — or for a higher ideal. But life is considered an intrinsic good, like happiness, truth, freedom, or justice. This view is usually coupled with an appeal to the sixth commandment, which prohibits killing. This is a difficult position to defend since exceptions are usually made for war, capital punishment, and self-defense. In some cases there may be overriding values, such as the protection of one's country or punishment for a crime, which may trump the value of life.
Instrumentalism is a moderate position that holds that life is a good to be preserved as a condition of other values. When other values can no longer be realized, then it no longer needs to be continued. Richard McCormick, when he refers to the struggle to survive, or the undue or unending effort to live, reflects this position. This position also regards life as meaningful and not absurd, a gift to be treasured. In other words, life is a prima facie good. However, life can be laid aside for higher values, for example, the duty to relieve others of the burdens produced by my life, or a heroic self-sacrifice to save a person or defend a cause. In other words, being alive enables us to fulfill other values, such as loving: that is, it is simply an instrumental value.
The third position, conditionalism, argues that life is only worth living as long as it meets certain established levels, criteria, or quality. (The story of Whose Life Is It Anyway? addresses this perspective. Originally a BBC documentary, a play (1972), and later a film (1981), it is the story of a quadriplegic who could no longer make love and sculpt, hence wanted to leave the hospital so he could die; it posed in dramatic form the issue of whether humans should be able to make their own choices about dying.) Here we begin to move into the areas of taste and preferences: what is acceptable to some people would not be tolerated by others. The difficulty with "quality of life" definitions are their misuse; they are open to all kinds of connotations. Some may judge the relative worth of a person based on diminishing humanhood, degree of suffering, or mental and physical prowess. The criteria used to establish quality of life generally fall into four categories: (1) The presence of incapacitating pain. Here there is nothing but misery and uncontrollable suffering. John Fletcher adopts this standard for the ending of life. (2) The standard of awareness — when the patient is unconscious or unaware of her surroundings with no prospect of change in the quality of life. This could include Paul Ramsey's category of those "beyond the reach of care" (Lynsch-Nylan), or the never-alive-in-the-first-place group, as with the anencephalic infant. (This is an infant born without a brain, but the distinction that such infants "were never alive in the first place" no longer applies, given current scientific advances that enable them to live longer and longer.) (3) Potential for relationships: life still has value but this value cannot be realized in physical existence. This is illustrated by Richard McCormick's "no potential for human relationships" group. (4) Personhood assessment: if there is only biological human life and no person who can generate rights, hence possess value, then the obligation to preserve life would be removed.
Our definitions of life and protectable human life affect the subsequent discussions in this book about euthanasia, physician-assisted suicide, withdrawal of treatment, and so forth. However, we need to begin with the metaquestions — what does it mean to be a person? and what is the meaning of health? — because these definitions influence our understanding not only of life, but also of death.
Doctrine of Human Nature and Understanding of Health
In contrast to contemporary medicine, the Judeo-Christian perspective of human nature starts with individuals and how their nature determines the meaning of health and sickness, healing and healers. The biblical definitions of health and sickness derive from the view that man/woman is a whole — body, mind, and spirit. This wholeness means that both physical and spiritual healing are important. Humans are created by God to live in community, not in isolation. This is why the vision of dying alone, abandoned by the medical profession as well as family and friends, may be our greatest fear. We share in the brokenness of our fallen human nature, even though we are created a little lower than the angels. We are all equal as children of God, made in God's image; but each person, though precious and unique, is not perfect.
If health is the integration of all aspects of our being, then being healthy reflects all that we were meant to be. There is a restlessness about our lives, a struggle to move toward completion, a yearning for something better. In these terms, total health is never reached and only briefly enjoyed. From a theological perspective, health is an eschatological idea, that is, it is what God promises and offers in the end. No one knows completely what health is because he/she has not totally enjoyed it. Health is a value, a process, not a goal — a journey, not a state. We experience brokenness in our lives — whether physical, spiritual, emotional, or mental — because we are not perfect beings. A wholistic view includes viewing us with respect to our environment — man/woman as a social being. We are not only defined by our internal workings but by our social relationships.
Psychologically, this understanding of man/woman has important implications. People are made to be in relationships, to experience acceptance by others, and to find meaning and purpose in life outside of themselves. This orientation toward others is an important part of what it means to be healthy. This understanding of what it means to be human and healthy forms a prelude to the discussion about the sacredness of persons. This means that love, not autonomy, is the most prized virtue.
The Sacredness of Persons
Ethicists often make distinctions between being human and being a person. Engelhardt's social person and Fletcher's twenty criteria of humanhood, as well as Singer's criteria for nontreatment, all rely on certain criteria for what it means to be a human and what qualifies as protectable human life. The debates about abortion and euthanasia also involve perspectives on humanhood, personhood, and value of life. Both legal and ethical arguments are mounted on both sides of the issue. God has declared special protection of humans because they are sacred. This sacredness toward people "inspires reverence. Sacredness is a holy specialness that signals people to stand off." Karl Barth described it as follows: "Respect is man's astonishment, humility, and awe ... at majesty, dignity, holiness, a mystery which compels him to withdraw, and keep his distance, to handle it modestly, circumspectly, and carefully."
When we feel this reverence-like respect toward another, we have found his or her sacred personhood, the quality that makes him or her unkillable. The question here is whether to follow Albert Schweitzer's "reverence for life" in general or the sanctity of human life. Lewis Smedes says that it is "better, for believers anyway, to remember that while God breathes the breath of life into all things living, it is persons whom he loves as his children." However, if one returns to the creation story in Genesis, God's response to everything God created was that it was very good. For the purposes of our discussion, we are focusing on human life, though its glory may be enhanced by other life around it. Focusing on the sacredness of persons may protect us from an absolutist perspective of life where physical life would be extended even when the person is gone or would suffer unduly because of its continuation.
The sacredness of persons is also related to the concept of the dignity of persons. Autonomy should not be the principal virtue; nor do personhood, freedom, and reason equal dignity. This has been a much-neglected idea until the President's Council on Bioethics (2001-2009) reintroduced it into its deliberations. This concept of dignity is meant to protect the weak as we support human flourishing. The proof of who lacks dignity rests on the shoulders of the accuser, so to speak. True dignity is rooted in the divine; it is not a question of the potential for dignity but it is full-blown. Our concern should be for "life around the edges," as Leon Kass expresses it.
Philosophical perspectives such as those of Immanuel Kant may value the individual, when he argues that a person is to be treated as an end rather than a means, based on his or hermoral agency. However, the problem with Kant's perspective is that he created a totally artificial separation between a person's intellectual and emotional life. Furthermore, since we could only know the phenomena (things as they appear), not the noumena (things in themselves), he opened the door to postmodernism and ultimately skepticism.
The Sanctity of Human Life
As we reflect on life as an ethical value, it is not reduced solely to sanctity of life but has many facets: value, respect, continuity, sanctity, and protection. The sacredness of persons gives rise to the sanctity of human life, but it raises the question whether we are referring to individual or collective human life. Life is a gift from God to be cherished. The sanctity of individual human life is grounded in the Judeo-Christian perspective that each one of us is made in God's image as an inviolate, unique person. Respect for persons is not tied to physical abilities, intellectual prowess, or societal contributions, but to the fact that we are all children of God.
Life is a gift from God of which we are stewards. We have a vocation to nourish, protect, defend, and improve it. This view provides a matrix for the uniqueness of each person, because sanctity is not founded on the quality of life as judged either by self or others. According to this perspective, sanctity of life is founded on our love for each person as he/she is—with all the imperfections and unfulfillments—because God loves him/her. Hence, an individual's value is tied to his/her relationship to God. God's love for us as creatures is not the only grounding but, as Herbert Butterfield puts it, is "cross-referenced to eternity." Since life continues forever, albeit in a changed form, we should consider it holy.
Societies that treated foreigners as less than human — as slaves or as possessions — have flourished. Greek popular morality tended to understand the individual not as a moral agent, but in terms of function or purpose. Thus were they the first utilitarians! Even Aristotle held that individuals should be loved on the basis of their virtue rather than simply on the basis of their existence. Human life was to be deemed sacred, but collectively rather than individually. As Basil Mitchell clearly points out, our ideas of human nature provide the basis for the sanctity of human life. It is difficult to find a grounding for the sanctity of life in the individual sense outside of a religious framework. The sanctity of life is grounded in the Judeo-Christian perspective that each of us is made in God's image as an inviolate, unique person. Human life is sacred from conception to death. There are no gradations of value at different points of the spectrum. However, some would argue that one can concede its sacredness without arguing that all human life is protectable.
Protection of Human Life as Tied to Its Value
It is important to distinguish between value, respect, sanctity, and protection of human life. In Reformed theology, human life is a first-order value and the focal point of God's creation and redemption. God cherishes us and is committed to the good of all humans. God's concern for human life anchors respect for life. "Explicit scriptural expression of this respect for life is found in the commandment to do no unjustifiable killing. The Reformed tradition has discerned several elements in this command. The first is the obligation to avoid doing harm. A second is the obligation to protect and preserve life by doing what sustains it. Yet a third is the recognition that these first two obligations can come into conflict in specific situations so that both cannot be fulfilled.... It is conceivable in such a case that taking life may be justified as more consistent with respect for life."
Protection of life for some is tied to a series of arguments about the beginning and the ending of human life. When human life begins — or more precisely, when an individual human life begins — is a matter of some debate. Three stages where it is reasonable to assume human life begins are: conception, when the unique genotype originates; segmentation, when it is irreversibly settled whether there will be one, two, or more individuals; and the early development of the fetus, when the "outline" of the cells contained is actualized in all essential respects, with only growth to come.
Joseph Cardinal Bernardin's arguments about life as a seamless garment are based on our understanding that life is a continuum and of equal value at any given point. Genetics, abortion, capital punishment, modern warfare, care for the terminally ill—all are pieces of a larger pattern. Concern for life in any one of these areas requires a concern for the broader attitude in society about respect for life. The viability and credibility of the "seamless garment" principle depend on the consistency of its application. 17 The right to life and the quality of life are of equal concern; the problem is that these may come into conflict.
Abortion and active euthanasia for some may be the same act, morally speaking, just at opposite ends of the spectrum. The choice is simply the time at which we will destroy life. Paul Ramsey says: "Fundamental to ethical reasoning is the requirement that cases be treated similarly if they are similar in all relevant and important moral features, that is, Morison's appeal to the structure of the current arguments in favor of benign liberalized euthanasia." In ethical terms, this is the proverbial "slippery slope." In other words, once humans at the edges of life are no longer valued, the value of everyone is threatened. Others would argue that, in the case of abortion, we are not talking about a person; but they would not disagree that the fetus is human.
Excerpted from Is God Still at the Bedside? by Abigail Rian Evans Copyright © 2011 by Abigail Rian Evans. Excerpted by permission of William B. Eerdmans Publishing Company. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
1 Reflections on Human Life 3
2 Contemporary Attitudes toward Death 17
II Negotiated Death
3 End-of-Life Choices: Distinctions and Debate 55
4 The Right to Die: Suicide and Physician-Assisted Suicide 111
5 Organ Donation: The Last Gift of Life 136
6 Legal Questions: Cases and Laws Addressing End-of-Life Issues 178
III The Experience of Dying
7 When Winter Enters Your Life: Pain and Suffering 219
8 The Last Days: Caring the Hospice Way 249
9 Good Mourning: Loss, Grief, and Bereavement 281
IV God at the Bedside
10 Clergy at the Bedside 317
11 Ministry to the Dying and Their Families: Faith Community Nurse and Pastor in Partnership 349
12 Death Is Conquered: How Christian Faith Informs Funerals 387
A Resource Organizations Addressing End-of-Life Issues 427
B Information on Advance Directives 437
C A Patient's Bill of Rights 439
D Author's Questionnaires 444
E End-of-Life Decision-Making Guide for Caregivers 453
F Parishioners' Instructions and Information for Clergy 455
G U.S. Organ Donors by Organ and Donor Type, 1997 to 2006 461
H Faith Community Nursing 462
I Some Do's and Don'ts for Caregivers 468
J Things You Can Do to Help Yourself Face Grief 471
Selected Bibliography 472
Index of Names 479
Index of Subjects 481