It can be helpful to have a document that indicates one's personal wishes for health care treatment at the end of life. If, for some reason, one is incapacitated and unable to make wishes known, these documents can provide loved ones and health care personnel with useful instructions on the treatment that one would request if it were possible to do so. Typically these are called "advance directives" or "living wills." Another document of this sort is the health care proxy. This form designates a particular individual who will serve as your agent in case of incapacitation and who will make health care decisions on your behalf.
Though these documents are helpful, they also have their limitations. The National Catholic Bioethics Center recommends that individuals favor health care proxies over advance directives because it is better to have someone whose judgment you trust acting on your behalf than to rely on a written statement indicating types of treatment. Circumstances change and future medical problems can be very difficult to predict. You do not want to bind others to directives which may, in fact, be the opposite of what is best for you.
One of the most popular documents for use as both a health care proxy and an advance directive is known as the "Five Wishes." According to the Aging with Dignity website, which now promotes it (www.agingwithdignity .org), close to four million copies have been sold so far. The site also boasts that seven thousand organizations "are distributing this revolutionary document, including churches, synagogues, hospices, hospitals, doctor and law offices, and social services agencies."
Unfortunately, the "Five Wishes" poses some serious problems. Catholics, in particular, should be wary about making use of it. Although it can be filled out in a manner that minimizes its defects, there is little reason to make use of a document that offers questionable options, as is clear in light of the recent statement of John Paul II, "On Life Sustaining Treatments and the Vegetative State."1
The Problem of Euthanasia
The central concern about the "Five Wishes" is that it allows the removal of food and water from a patient simply because he or she has suffered brain damage and is not likely to recover from that condition. There is no requirement that the patient be dying.
Those who have a printed copy of the "Five Wishes" will find the problem on page seven, where the patient is given the opportunity to end the provision of food and water in the event "that I have permanent and severe brain damage (for example, I can open my eyes, but I cannot speak or understand) and I am not expected to get better, and life-support treatment would only delay the moment of my death." This provision applies to anyone who has suffered severe brain damage, including, presumably, those who have fallen into the so-called persistent vegetative state. Under another option offered on this page, the patient may request to have food and water terminated if in a coma "from which I am not expected to wake up or recover, and I have brain damage, and life-support treatment would only delay the moment of my death."2
These options are presented alongside a box that can be checked by the patient, so there is no explanatory material to help one understand the meaning of these choices. One simply checks whatever boxes he or she likes. Thus I could check a box that effectively indicates that if I am in a persistent vegetative state I would want to have food and water removed, thus bringing about my death long before it would naturally occur. John Paul II addresses this very case: "Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal [i.e., the withdrawal of food and water]. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission."3
These are strong words, but they apply here. To remove food and water from a patient who is not dying is to bring about the death of that person through starvation and dehydration. And given that the "inability to speak or understand" is presented by the "Five Wishes" as only an example of the type of brain-damaged condition that would justify the removal of food and water, one can imagine other situations where a less severe form of brain injury might leave one with some minimal ability to speak or understand. These cases would also warrant the removal of food and water, according to the "Five Wishes." But if it is wrong to deprive another of food and water who is in a persistent vegetative state, then it must also be wrong to do so for one who suffers from a condition that is less severe.
The reason why John Paul II states that it is wrong to deprive those who are not dying of food and water is because that deprivation is the cause of death in the patient. Death is not the result of some defect in the natural order, but the result of the actions of the staff who have decided (in keeping with the stated wishes of the patient) not to provide a basic form of care. Death results from human decision, not the underlying illness.
So here is the difficulty. Options are presented in the "Five Wishes" that could lead to acts of euthanasia by the patient's family, loved ones, or health care personnel. Of course, one could avoid this problem by not checking certain boxes. One could ask for the continued provision of food and water, despite any future injury to the brain, but why offer a choice that leads to an immoral course of action? Given the vast numbers who have purchased the "Five Wishes," we can suppose that a great many have indeed chosen incorrectly and that others have doubtless acted on those erroneous decisions.
A Lack of Nuance
The source of the problem faced by the "Five Wishes" is its lack of nuance; for example, it draws no distinction between care and treatment. Care consists of routine assistance given to the patient, like changing the bedclothes or providing sufficient warmth. Treatment consists of medical procedures that seek to provide a cure or at least to alleviate the patient's underlying condition. An operation to remove a tumor may or may not be justifiable, depending upon whether it is deemed ordinary or extraordinary means for this particular patient. Someone who is suffering multiple organ failure, for example, has no obligation to have that tumor removed, even it might be easily done. Death is already near and inevitable.
The provision of food and water, however, are ordinary care and therefore should be routinely provided to all patients. Although it is true that, in some cases, even these may be legitimately withdrawn, checking a box on a form does not tell us which cases those are. For example, if the body can no longer assimilate food and water, then obviously these are no longer achieving the purpose for which they were intended.4 The "Five Wishes" document cannot assist care-givers in making such decisions, for it speaks only of "Life-Support Treatment." This includes "medical devices put in me to help me breathe; food and water supplied by medical device (tube feeding); cardiopulmonary resuscitation (CPR); major surgery; blood transfusions; dialysis; and antibiotics; and anything else meant to keep me alive."5 Checking a single box covers everything from major surgery to food and water.
As a result, the document tends to encourage decisions based on "quality of life" standards. Quality of life judgments must indeed sometimes be made. They are critical for determining whether a particular medical procedure holds out sufficient promise of alleviating a patient's con dition to make it worthwhile; however, such judgments have to be subordinated to a more principled decision about the cause of death in a patient. Someone who is in a persistent vegetative state, or suffering from severe brain damage, does indeed have a poor quality of life, but that is no reason to terminate the provision of food and water and bring about the death of that person.
Those who use the "Five Wishes," and check boxes that authorize the removal of all "life-support treatment" (which here includes food and water), are giving a great deal of power to those who will decide the future course of their medical care. The irony is that, in an effort to ensure that their own wishes are being faithfully followed, some are actually assigning others a control over their own lifeâ€”and deathâ€”that borders on the absolute.
Edward J. Furton, M.A., Ph.D.
1John Paul II, "On Life-Sustaining Treatments and the Persistent Vegetative State," The National Catholic Bioethics Quarterly 4.2 (Summer 2004), 367_370.
2Aging with Dignity, "Five Wishes," November 2001, 7, http://www.agingwithdignity.org/5wishes.pdf.
3John Paul II, "On Life-Sustaining Treatments, n. 4.
4"I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering." Ibid.