Death & Dying Issues
DEATH AND DYING ISSUES
Bishop James McHugh
The Second Vatican Council emphasized that the dignity of the human person and the sanctity of human life are fundamental principles in dealing with many contemporary moral problems. "The Pastoral Constitution on the Church in the Modern World," in its second chapter, "The Dignity of the Human Person," provides something of a backdrop for some of the issues I will discuss. Allow me a short quotation:
The Mystery Of Death
"It is in the face of death that the riddle of human existence becomes most acute. Not only is man tormented by pain and by the advancing deterioration of his body, but even more so by a dread of perpetual extinction. He rightly follows the intuition of his heart when he abhors and repudiates the absolute ruin and total disappearance of his own person.
Man rebels against death because he bears in himself an eternal seed which cannot be reduced to sheer matter. All the endeavors of technology, though useful in the extreme, cannot calm his anxiety. For a prolongation of biological life is unable to satisfy that desire for a higher life which is inescapably lodged in his breast.
Although the mystery of death utterly beggars the imagination, the Church has been taught by divine revelation, and herself firmly teaches, that man has been created by God for a blissful purpose beyond the reach of earthly misery. In addition, that bodily death from which man would have been immune had he not sinned will be vanquished, according to the Christian faith, when man who was ruined by his own doing is restored to wholeness by an almighty and merciful Savior.
For God has called man and still calls him so that with his entire being he might be joined to Him in an endless sharing of a divine life beyond all corruption. Christ won this victory when He rose to life, since by His death He freed man from death. Hence to every thoughtful man a solidly established faith provides the answer to his anxiety about what the future holds for him. At the same time faith gives him the power to be united in Christ with his loved ones who have already been snatched away by death. Faith arouses the hope that they have found true life with God."
The final paragraph of this same chapter is especially poignant:
"Such is the mystery of man, and it is a great one, as seen by believers in the light of Christian revelation. Through Christ and in Christ, the riddles of sorrow and death grow meaningful. Apart from His gospel, they overwhelm us. Christ has risen, destroying death by His death. He has lavished life upon us so that, as sons in the Son, we can cry out in the Spirit: Abba, Father!"
The topic before us is death and dying, a topic with many dimensions and one that receives increasing attention in our society. Among the reasons for this increased attention are the following:
1. Scientific progress that has led or promises to lead to the cure of diseases that formerly resulted in death, and expectation that such progress will continue;
2. The ability of medicine to develop new technologies to supplement or supplant bodily systems that are necessary to sustain life (heart by-pass, dialysis, transplantation).
3. New technologies that provide ready access, worldwide, to the latest scientific data regarding specific diseases.
4. At least in the developed world, better nutrition, preventive health care and knowledge regarding good health habits that have increased longevity and decreased mortality rates. At the same time, paradoxically, many people die prematurely or seemingly inexplicably because of:
personal life style or behavior that cancels out the ability to control or overcome disease; e.g., tobacco, drugs, alcohol;
persistence of as yet unsolved genetic mysteries that give some people a relatively short life span;
emergence of new deadly diseases that quickly reach epidemic proportions;
the absence for too many people in our society of access to basic health care;
some diseases or pathological states on which at present we do not have sufficient research to diagnose or treat.
In the light of these factors, there have been efforts in the legislatures that attempt to deal with the unresolved issuesoften referred to as death-with-dignity lawsand in the courts to resolve the rights and duties issues. The legal and judicial debates receive considerable media attention, thereby heightening public awareness but not necessarily understanding.
In any case, physicians, ethicians and many other concerned persons have concentrated their attention on:
1) the precise definition of death;
2) the criteria for determining when efforts to prolong life may legitimately be withheld or withdrawn;
3) the rights of patients and the corresponding rights and duties of those in the health care professions.
The physician's interest springs from his concern for the patient and the patient's family. Family and friends are concerned with keeping their trusts of love, companionship or friendship with the patient. The moralist and the private citizen are concerned about the bases on which decisions are made, who takes responsibility for them, and how, in a comfort-oriented society, people will be able to understand the meaning of death and the final events in a dying person's life.
In some cases, attempts to achieve a contemporary understanding of death and dying are but a subterfuge for efforts to permit legal euthanasia or mercy killing. Behind much of the public discussion is the promotion of the "quality of life" ethic, according to which the lives of certain persons are considered of inferior quality because of some defect or disadvantage, because of the burden that such persons place on others, or because it is deemed too costly for society to provide care and sustenance to keep them alive.
For the purposes of our discussion, I will limit myself to the following issues:
1. The emergence of new and determined efforts to shape a public morality that approves active euthanasia.
2. The specific issue of withholding or withdrawing artificially provided nutrition and hydration from non-dying patients.
3. The role of law and its inherent limits.
In approaching these issues, I work from a set of moral principles shaped by the teaching of the Catholic Church. I also recognize that on many issues there is disagreement and debate among Catholics. I propose, however, that these principles would be affirmed by all, but perhaps applied differently to specific cases. It is the responsibility of all of us to continue the discussion in candor and charity, always pursuing a struggle toward consensus, a strain toward consistency with our heritage and with respect for the unique teaching role and responsibility of the pope and bishops in the Roman Catholic community.
First then, I propose the following principles:
1. Human life is a precious gift from God, a basic good and the foundation of other goods.
2. The human person enjoys a specific relationship with God who has created and redeemed each of us and calls us to eternal union with Him.
3 . We have stewardship over our lives, not absolute dominion, and are thus subject to God's laws regarding human life.
4. Euthanasia and suicide constitute an unjustifiable destruction of human life and are not morally permissible. Therefore we may not intend to terminate an innocent person's life by deliberate act or omission, even if he or she is incapacitated.
5. The quality of a person' s life is not the decisive factor in determining the use or non-use of medical or technological means to sustain life.
6. In deciding on the use of various means of sustaining life, we have customarily referred to a principle enunciated by Pius XII, that is, we are held to use ordinary means to sustain life, but we are not held to use extraordinary means in every case. More recently, the Holy See's "Declaration on Euthanasia" has refined the principle somewhat, concluding that medical therapy or technology need not be used if it is excessively burdensome or provides no benefit to the patient.
7. Society has a responsibility to protect innocent human life from conception to natural death by its laws and social policies.
I now move to the specific issues enumerated above.
1. The emergence of new and determined efforts to shape a public morality that approves active euthanasia.
By active euthanasia I mean direct and deliberate attempts to terminate a person's life, including assisting the patient to take his or her own life. The "Declaration on Euthanasia" of the Sacred Congregation for the Doctrine of the Faith (1980) defines euthanasia as "an action or omission which of itself or by intention causes death, in order that all suffering in this way may be eliminated. Euthanasia 's terms of reference, therefore, are to be found in the intention of the will and in the methods used."
In 1970, scientist Dael Wolfe posed the following questions in an article in "Science" Magazine:
"Is society ready to analyze death and the prolongation of life in terms of cost-benefit analysis, or to consider shifting the use of expensive facilities from the hopelessly ill to those whose future holds more promise? What about the customary reluctance to administer powerful but addictive drugs until "near end"? What do we think of the "senseless prolongation" of life? Birth is no longer blindly accepted, but increasingly is planned and timed. Does this development and the growing acceptance of abortion indicate a readiness to consider euthanasia? The taboo against the discussion of such questions will have to relax, and seems already to be doing so. A society increasingly concerned about the quality of life cannot omit the final chapter from its concern" ["Science," June 19, 1970].
In the short span of 20 years we have gone from stating the questions to advocacy for and attempts to socially justify, approve and perhaps mandate euthanasia. I cite three incidents within the last two years that show the quickening of the euthanasia march.
a) "It's Over, Debbie." This was an unsigned opinion piece that appeared in the "Journal of the American Medical Association" on January 8, 1988.Supposedly written by a physician, it describes his call to a patient who was dying of ovarian cancer. He judged her suffering to be too intense and he decided to inject a lethal dose of morphine. Within ten minutes the patient died. The article sparked sharp debate in the health care community and beyond. Clearly, the emphasis on compassion and the seemingly uselessness of treatment or continued care as described in the article led many people to sympathize with, if not approve, the action of the doctor.
b) "Dr. Kevorkian's suicide machine." Dr. Kevorkian, a Michigan physician and longtime advocate of euthanasia, used a machine he invented on a 54-year-old woman from Oregon who was a victim of Alzheimer's disease.
Though her memory was slipping, at the time she knew what she was doing and could carry on a conversation. Dr. Kevorkian served as doctor, judge and executioner. "My ultimate aim is to make euthanasia a positive experience," explained the doctor. "I'm trying to knock the medical profession into accepting its responsibilities, and those responsibilities include assisting their patients with death. " The doctor's action has certainly provoked a discussion about suicide, euthanasia and the ethics of medicine. The law enforcement authorities in Michigan have prohibited any further use of the machine. Nonetheless, though many doctors opposed his actions, others have come out in favor of his intent.
The Hemlock Society, which promotes euthanasia, makes no secret of its support for the Michigan doctor's approach. Yet we find new evidence that the issues are far from clear. For instance, doctors say that Alzheimer's disease is difficult to diagnose, has various paths of progression, and generally does not involve a great suffering to the patient until perhaps the final stage. If the suicide machine is appropriate for people who may have Alzheimer' s, what about people with cancer, heart disease, high blood pressure and proneness to strokes? Should they be counseled and enabled to end their lives?
c) "New York doctor assists patient in suicide." In the "New England Journal of Medicine" (February 28, 1991), Dr. Timothy Quill described how he agonized over the treatment of a patient who was suffering from cancer but had a one in four chance of survival. Ultimately, after much treatment and counseling, which included a discussion of suicide, Dr. Quill acceded to the patient's request for barbiturates. Knowing that the use of barbiturates is "an essential ingredient in a Hemlock Society suicide," Dr. Quill made sure his patient knew how much was necessary for sleep and how much for suicide. The patient successfully took the suicide dosage and died. Dr. Quill justifies his action in the "New England Journal of Medicine" article. It will no doubt prompt considerable response.
I believe these three cases indicate that we have already begun the downhill run toward legally approved assisted suicide and active euthanasia.
2. The Withholding Or Withdrawing Of Artificially Assisted Nutrition And Hydration From Non-Dying Patients.
In recent years there has been a series of these cases (e.g., Brophy, Jobes), many of which have gone to the courts and oneNancy Cruzanto the U.S. Supreme Court. A new case is now under consideration in Missouri in which the father of a similar young woman, though apparently not as disabled as Nancy Cruzan, seeks to move his daughter to Minnesota, where he believes it will be easier to remove her feeding apparatus and bring about her death.
In terms of the moral issue there are various approaches. I offer my own approach and the reasons for it.
First of all, patients in a permanent coma or persistent vegetative state are not "brain dead," nor are they in the dying process. PVS is a description of the patient's condition. Such patients have suffered some type of accident to the brain and have become comatose. A portion of their brain does not function, and thus they are unable to speak, to move about, to give evidence of awareness of their surroundings. Scientists believe they are not suffering because they cannot feel pain. They breathe on their own and experience periods of sleep and wakefulness. They are unable to take food and water in a normal fashion, so they are given nourishment and fluids by some type of feeding process, usually a tube inserted directly into the stomach. Diagnosis establishing that the patient is in PVS can take from three months to a year. The patient is not deteriorating day-by-day, but needs daily nursing care. At the present time there is no known therapy to restore brain function. There have been cases of patients judged to be permanently comatose or in PVS who have awakened and begun to speak and function. On the other hand, as more is learned about coma and brain function or its absence, and new tools of diagnosis are invented, it may become clear why some patients will never regain consciousness.
The problem is that at the present time we know that a PVS patient is living, is brain-damaged and disabled, but given nourishment and liquids and nursing care, such a patient may live for many years. If the nourishment is taken away, the patient will die in about a week' s time. In effect, death will come from starvation.
This is considerably different from the patient who is unconscious but actually dying of cancer, heart failure, AIDS complications, multiple injuries or some other fatal disease. Artificially provided nutrition and hydration in these cases may be useless to sustain life or too burdensome to provide. This distinction, between patients who are actually dying and those in PVS, is not generally recognized in the news reports. The decision of the U.S. Supreme Court seems to resolve the legal question for people who have clearly stated their will beforehand, but the moral question is far from resolved.
Among Catholics, the issue seems to come down to two different approaches, and two different conclusions. The first approach sees the PVS patient as incapable of thought or ability to respond to his or her environment and considers this absence of cognition and affection as an inability to exercise one's spiritual faculties and possibly a danger to one' s overall spiritual good, that is, union with God. Furthermore, since the brain damage seems to prevent normal swallowing, this approach holds that the person is in fact already dying from the inability to swallow. A number of Catholics who hold this position agreed with withdrawing nutrition and hydration from Nancy Cruzan and other similar patients.
I find this first approach unsatisfactory because it places too much emphasis on the patient' s inability to think or respond. There does not seem to be conclusive scientific evidence that the patient cannot think or know what goes on about him or her. In fact, diagnosis of the precise damage to the brain is difficult to achieve. Scientists strongly emphasize the absence of research in regard to brain disease or malfunction. Much of what the doctors conclude is inferential, and in most cases, the only way to arrive at certainty is by autopsy. Furthermore, almost daily there are new scientific discoveries regarding the function of the brain that call for extreme caution in making absolute judgments about PVS patients.
Finally, by justifying withdrawal of nutrition and hydration, and thereby justifying ending a patient's life, we tend to overemphasize the presence or absence of brain activity as the principal measure of humanness or personhood. Our ability to measure brain activity is still rudimentary (it requires technology and great skill) and tenuous (note the apparent wake-ups from prolonged coma). In any case, absence of reasoning does not make one a non-person, a shell, a vegetable or a machineall words that have been used in regard to PVS patientsnor does it justify deliberately causing death.
A second reason for my rejecting this approach is that the scientific evidence does not fully support the argument regarding inability to swallow. At least in some cases swallowing could be induced as a reflex mechanism, though it would hardly be a proper or humane way to care for the patient. The point is, since we have relatively simple and effective ways to provide nutrition and hydration to patients in need, inability to swallow cannot be the decisive factor to prove that the patient is dying.
Furthermore, some patients may need assisted feeding for a long period of time, but otherwise function normally. Does their inability to swallow justify withholding food and fluids?
Finally, during the past few years there have been a number of prominent cases involving children. Even sophisticated diagnostic tools do not adequately measure brain damage in children, and children seem to have powers of recuperation not found in adults. In a number of such cases, the child regained some mobility after earlier brain tests gave no reason for hope of recovery and the medical teams had virtually given up all hope.
The second approach sees the PVS patient as living but as seriously disabled. Food and water does not cure the PVS patient; it maintains life. It does not cause suffering for the patient nor is it considered exceptional or experimental medical technology. If the nutrition is discontinued then the patient will die because a new cause of death has been introduced, that is, from a deliberately intended deprivation of nourishment, or in common language, from starvation.
My personal commitment is to the second approach. First of all, there is a special linkage between food and life. Respect for life impels us to feed those who need feedingthe starving in Africa, infants, the homeless and disabled in our own local area. Furthermore, human solidarity and compassion as well as Christian charity should deter us from allowing certain types of peoplethe disabled or the unconsciousto be placed beyond our willingness to sustain their lives and care for them, even at some sacrifice or social cost. (Much has been made of the cost of care of Nancy Cruzan to the state of Missouri.)
In the course of developing this position, I have consulted many specialists in neurology, neuropathology and other fields of medicine. I have attended symposia, read an enormous amount of literature and kept up the debate with other Catholic ethicists who have different approaches.
Let me give a brief summary of all this and then move to what I consider a cautious conclusion.
1) Scientists and medical specialists tell us that there is not a great deal known about the intricacies of PVS, and that there is a serious absence of research material and data on patients.
2) New scientific data is coming forward on the development and function of the human brain, at times pointing to different conclusions or assumptions than those presently accepted.
3) There are different causes of prolonged coma or PVS, and these influence possible outcomes. Often, the cause is unknown to the medical team.
4) We are developing ethical criteria based on unsettled medical knowledge. For instance, there is a medical debate about whether PVS patients can experience pain and also about whether they are able or unable to swallow.
5) Good diagnostic work usually only occurs in major medical centers that have both the technology and the skilled medical personnel.
6) Increasingly, physicians are influenced by the will of the patient, often communicated by a third party, rather than their own medical judgment in the difficult cases. The courts follow the same path, but absent from the analysis are objective norms or principles, and the right and responsibility of the state to protect human rights and maintain societal respect for human life, and to insure competence in medical treatment, seem to be issues that have been set aside.
7) Within Roman Catholic ethics, we have traditionally relied on Pius XII's principle regarding the use of ordinary or extraordinary means to prolong life. More recently we have moved to the proportionate weighing of the burdens and benefits of a specific treatment or care technique. There is considerable need for a reexamination of Pius XII ' s writings to see if and how they might be applied to some of the new cases.
In the light of the above analysis and commentary, the principles cited earlier should be applied to specific cases in the following manner:
1. Unconscious, imminently dying patient. In the unconscious, imminently dying patient (i.e., progressive and rapid deterioration), the dying process has begun and cannot be reversed. Nutrition and hydration are now useless and, all things considered, no longer a reasonable burden.
2. Conscious, imminently dying patient. In the conscious, imminently dying patient, nutrition and hydration are useless, possibly burdensome, and need not be artificially provided but may be if desired by the patient.
3. Conscious, irreversibly ill not imminently dying patient. In the conscious, irreversibly ill, not imminently dying patient, the person is conscious, beyond cure or reversal of the disease, but able to function to some degree. Nutrition and hydration sustain life, so they are not useless; and usually they are not unreasonably burdensome. Nutrition and hydration should be provided unless or until there is clear evidence that provision of nutrition and hydration constitutes an unreasonable burden for the patient.
4. Unconscious, non-dying patient. In the unconscious, non-dying patient, nutrition and hydration should be supplied. Feeding is not useless because it sustains a human life. There is no indication that the person is suffering, nor is there any clear evidence that the provision of nutrition and hydration is an unreasonable danger or burden. In such a case, the withdrawal of nutrition/hydration brings about death by starvation/dehydration. Absent any other indication of a definite burden for the patient, withdrawal of nutrition/hydration is not morally justifiable.
Briefly I conclude that in the case of PVS patients, respecting our lack of knowledge in many areas and our responsibility to protect the lives of all persons, especially the infirm and disabled, we should take the safest course, that is, nutrition and hydration should be provided as part of a patient' s normal care, even if provision of such care requires medical technology, unless or until the benefits of nutrition and hydration are clearly outweighed by a definite danger or burden, or they are clearly useless in sustaining life.
3. The Role Of Law And Its Limits.
In recent years the state legislatures have taken up different types of legislation dealing with death and dying.
a) Declaration of death. Since the early 1970' s this type of legislation has been debated and refined. The Uniform Determination of Death Act states that:
An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.
This model statute has formed the basis for many state laws, and some refinements or protections have been explicitly introduced at the state level. The legislative debates have been helpful.
b) Living wills, advance directives, medical power of attorney laws. These laws are more difficult to deal with because often they are part of a larger package of laws and are intended as a first step toward euthanasia-type legislation. Such laws usually contain the following elements:
A provision that there is no need to use extraordinary means to sustain life when death is imminent and health cannot likely be restored.
A provision that there is no need to sustain life processes when health or functioning cannot be restored.
A provision that gives a patient the prerogative to sign a document (usually called a Living Will or Advance Directive) giving legal permission to discontinue extraordinary means.
A provision that allows for proxy consent by the family or a committee of doctors.
A federal law was recently adopted requiring all hospitals that received Medicare or Medicaid funds to inform patients of their rights to refuse life-prolonging care. This will no doubt promote the use of living wills or advance directives. Many states already have such laws, and many have included safeguards to pregnant women and/or exclusion of withdrawing artificially provided nutrition and hydration. Though many deny it, part of the motivation for these laws is that they hold down expenditures for health care, especially for the elderly, the incurable or chronically ill.
Human life is our most precious gift, and in many ways our most fragile possession. The beginning of each human life is a continuing reminder of God's creative love and the basis of the value and dignity of the human person. Even for those who do not believe in God, the miracle of life awakens a sense of the sacred, that is, of the beauty and uniqueness of each human person.
But the life of any human being cannot be isolated or sealed off; no one lives alone. Society expresses its value for human life by protecting the life of each and every member of the human family by its laws and social institutions. No life is of inferior value, beyond protection or sustenance. The law must be the guardian of each person's life and rights, and it must apply equally to all.
The sanctity of human life and the dignity of the human person, then, are fundamental principles in dealing with contemporary moral problems. These principles have a history in the scriptures and in the life experience of the early Christian church, but they are especially important today when the "justifications" for certain violations of human life and human dignity are based on the greatest good for the greatest number or the assumption that in certain difficult situations, a specific evil becomes permissible. These principles are especially important in building a societal respect for human life at every stage of its existence from conception onwards.
Most Reverend James T. McHugh
Bishop of Camden
March 11, 1991