Dr. Daniel P. Sulmasy
The Catholic case for advance directives
Image

Out of fear that euthanasia and assisted suicide may be legalized, some Catholic commentators have raised questions about the ethics of advance directives for medical decisions. They have almost made it seem as if such documents are intrinsically tied to the “culture of death” and ought to be avoided by faithful Catholics. This is a mistaken view.

An advance directive is a document, like a living will or durable power of attorney for health care, by which a person provides guidance for others who may be called upon to make medical decisions on behalf of the issuer of the directive if he or she is unable to do so.

Like any good thing, advance directives are susceptible to abuse, but they are not intrinsically connected with euthanasia. Although not a panacea, they can be very useful. Advance directives should be viewed by Catholic Christians as tools to help families and physicians make good decisions about patients who cannot speak for themselves at the end of life. They fit squarely within the Catholic tradition of forgoing extraordinary means of care, a tradition that springs from four natural law principles that can be held independent of any faith commitments.

The first principle is the dignity of the human person. Each individual, by virtue of being human, has an intrinsic value Catholics call dignity. This is the fundamental principle of all interpersonal morality. Medicine reaches out to the sick first and foremost because each person has an intrinsic dignity.

The second principle is the duty to preserve life. This duty, while not absolute, is based on natural instincts, gratitude for the gift of life and duties to fulfill responsibilities toward others.

The third principle is the fact of finitude. Human beings are finite. People get sick; they die. Medicine is a finite craft, and all patients ultimately die. Individual and collective resources are also finite.

The fourth principle is the diversity of the human. Individuals are different from each other in all sorts of ways. Decisions must take into account the uniqueness of each case.

Extraordinary Meanings

Suicide and euthanasia are considered immoral because they violate the dignity of the person and undermine the duty to preserve life, which can never be made consistent with a direct intention to eliminate life. Western moral thinking, however, has always recognized the fact of finitude. The duty to preserve life, therefore, is limited. Hippocrates does not counsel physicians to keep treating patients to the bitter end. Rather, he urges physicians not to treat those who are “overmastered” by disease, recognizing that “in such cases medicine is powerless.” Today, it is recognized that even with the most sophisticated technology, doctors cannot keep patients alive forever.

It is from these principles, simultaneously affirming the dignity of the human person and human finitude, that the moral tradition of forgoing extraordinary means of care arose. To say that an intervention is extraordinary signifies that its use is optional—that one need not use it. One should not be confused by the use of the words ordinary and extraordinary in everyday speech. Extraordinary is used here as a technical term meaning non-obligatory, and ordinary is used to mean obligatory.

By tradition, an intervention is deemed extraordinary if it is futile, that is, if it will not work (will not cure the patient, reverse the condition or appreciably forestall an imminent death) or if the burdens imposed by the intervention—physically, psychologically, socially, economically, morally and spiritually—outweigh the benefits. By tradition, one does not focus on the intervention itself, a priori, divorced from a case. The adjectives ordinary and extraordinary modify one’s duty to use an intervention; they do not modify machines or treatments. That means one can never say, “This treatment is always ordinary,” or “That treatment is always extraordinary.”

In keeping with the principle of diversity, these judgments always depend upon the circumstances. So, for example, one can never say, “Ventilators are extraordinary and antibiotics are ordinary.” Surgery for a ruptured appendix, for instance, might require a ventilator. Other things being equal, the duty to use a ventilator would be ordinary in such circumstances. But in the case of pneumonia in a patient with untreatable metastatic or widespread cancer, a ventilator might not appreciably forestall an imminent death. Even if not strictly futile, the burdens could certainly be judged to outweigh the benefits and so the duty to use the very same machine, a ventilator, would be extraordinary in such circumstances. Even antibiotics could be considered an extraordinary means in such a case. Since antibiotics would preserve the patient’s life perhaps a few hours or days, in this case even the burden of being stuck with a needle could be judged to outweigh the benefits. In such circumstances, the duty to use antibiotics would be morally optional. No intervention can be judged ordinary or extraordinary apart from the circumstances.

The Patient’s Perspective

The Catholic tradition of forgoing extraordinary means of care has always examined these cases from the perspective of the patient, asking only whether it would be reasonable, in the patient’s circumstances and in the patient’s judgment, to forgo the intervention. The perspective is not that of the physician or the family in light of their duties toward the patient, but is instead that of the patient who has a duty to preserve his or her own life. The patient traditionally has been given wide latitude in deciding what is extraordinary, within the bounds of reason and the judgment of the community. The limits are broadly drawn, not because of any notion of unrestrained autonomy, but because of the fact of diversity. People do, in fact, differ. They have different pain thresholds. They react differently to the same medicine. They have differing psychological, social, economic, moral and spiritual resources. No one understands this as well as the patient.

Thus, if a patient had lymphoma, a type of cancer, and had failed five treatments, all with terrible side effects, and the oncologist were to offer a sixth treatment, a patient might well judge this to be too much to ask—an extraordinary treatment. Another patient with the same lymphoma, having failed the same five treatments, although without such bad side effects, who might be looking forward to a daughter’s marriage in two months’ time, might consider the treatment worthwhile. It would depend upon each of them as individuals, not upon judgments about chemotherapy abstracted (a priori) from the individual’s case.

If a patient becomes unable to think or communicate, treatment decisions have rested not with the physician, but with the family. The traditional moral viewpoint assumed by the family was always that of the patient. “Knowing our son,” or “knowing my wife,” these burdens are too great relative to the benefits. This is natural. This is traditional. The family knows the patient better than the physician does.

Relieving the Burden

Advance directives help put the focus back where it should be—where families, friends, pastors, physicians and the law all should have their focus—squarely on the patient. In the 21st century, advance directives have become useful instruments for carrying out traditional morality. This is primarily because so many people now die after they have already lost their decision-making capacity. Because of medical successes against cancer and heart disease, more people will live long enough to succumb to Alzheimer’s disease, for example. People who used to be dead within hours from septic shock can now survive in intensive care units. But this success comes at a price. While some will survive, most will still die after having spent weeks on life support, unable to speak for themselves. Studies have shown that as much as 86 percent of the time, judgments to forgo cardiopulmonary resuscitation are made when the patient cannot participate in the decision. There is almost a moral imperative for people, realizing that they very well might die in a state of mental incapacity and aware that each is the best judge of his or her own limits, to execute advance directives in order to assist those who will make decisions for them.

The second reason to reconsider the value of advance directives is the power of medical technology. An advance directive is not an arcane abstraction. With so many possible treatments, studies now demonstrate that approximately 90 percent of hospitalized patients die after a decision to forgo a procedure that could have been tried. One of the burdens of contemporary medical technology accompanying its many benefits is the responsibility for deciding when not to use it. Otherwise people will become prisoners of technology.

The third reason is the great weight that falls upon loved ones. Studies have shown that making these decisions is exceedingly stressful for families—equivalent to the stress of having survived a house fire or other calamity. These studies also show that when a patient has filled out an advance directive, the stress levels of loved ones are significantly lower.

Fourth, increasing numbers of persons have no families to make decisions for them as they are dying. Sometimes this is caused by social ills—drug addiction, broken families and the like. Sometimes this is because women outlive all the persons for whom they had cared over most of their lives, dwell alone and have no one they would trust to make decisions for them. How else are decisions to be made for such persons?

Finally, families sometimes are unable to agree on decisions at the end of life. The dying process can expose old family wounds; and the consequence is, as a default, the continuation of life-sustaining treatment. That decision might not be what the patient would have wanted. It might not be what the physician thinks is in the patient’s best interests. It might not be what most of the family thinks is right. But without some way to resolve the dispute short of recourse to the courts (always a bad idea), the treatment continues because the alternative is irreversible. Advance directives can provide a simple way of settling such disputes.

Preference for a Proxy

How do these instruments work in practice? There are two basic types of advance directives—the living will and the durable power of attorney for health care (or health care proxy). Briefly, a living will lists the patient’s preferences for or against certain treatments at the end of life and goes into effect if one is terminally ill and lacking in decision-making capacity. The health care proxy names a person (and generally an alternate) to whom the physicians should turn for medical decisions in the event that the patient is unable to make them. Some documents combine elements of both. Forms can be obtained from physicians’ offices, state government Web sites, hospitals and lawyers. Lawyers are not necessary, however. All one needs, typically, is for two persons to sign an attestation that the person making the directive was in a rational state of mind at the time the document was executed.

Advance directives are not a panacea for the complexity of end-of-life decisions. People often hesitate to fill them out, and most Americans die without them. Living wills can be too vague or too specific, and these documents, which are written texts, are as such subject to interpretation. Most patients would opt to give their loved ones substantial authority to interpret their documents and even to override their preferences, because they trust their families to act out of love. Thus the health care proxy form is the overwhelming preference of ethicists and clinicians. It is much easier for them to talk to a person who knows the patient and has been selected by the patient than it is to try to interpret a piece of paper. Catholics who are wary that their documents could be abused and their religious beliefs ignored would be best served by designating a health care proxy as they prepare their advance directives. But even this important role has its limits: Patients frequently fail to discuss their wishes with the person they appoint as proxy, and studies have shown that proxies are often inaccurate in predicting patient wishes.

Some faithful Catholics might worry that recent changes in church teaching regarding the use of feeding tubes for persons suffering from devastating neurological conditions, like the persistent vegetative state, will require them to alter their existing advance directives or to avoid using advance directives altogether. Recent church teaching, however, emphatically has not altered the centuries-old Catholic tradition of forgoing extraordinary means of care. Feeding tubes can still be considered extraordinary (i.e., optional) for patients who are dying of progressive underlying conditions like cancer or advanced dementia or if the use of the tube is associated with great burdens or costs. To try to specify in a living will all the nuances of Catholic teaching about feeding tubes would do more harm than good by creating a complicated and confusing text that others would later have to interpret. This is just another reason for preferring a health care proxy. Then one needs only to instruct one’s proxy to decide on one’s behalf in accord with church teaching.

Despite their limitations, advance directives provide an important means to accomplish the goals of the tradition of forgoing extraordinary means. Advance directives foster decision-making by those who know and love the incapacitated patient that is focused on the authentic values and real interests of the dying patient. Such decisions would constitute good care, recognizing both the dignity and the finitude of the human person, affirming the value of life but conscious that our ultimate destiny is eternal, not temporal.

More information on composing advance directives.

Glossary

Advance directive: a document, like a living will or durable power of attorney for health care, that enables a person to provide guidance for others who may need to make medical decisions on that person’s behalf in the event that the author of the directive loses the capacity to make decisions.

Living will: a listing of the patient’s preferences for or against specific treatments at the end of life, which goes into effect if one is terminally ill and lacking in decision-making capacity.

Durable power of attorney (health care proxy): a document that names a person (and usually also an alternate) to whom physicians should turn for medical decisions in the event that the patient is unable to make decisions.

Extraordinary means: a technical term in ethics that means non-obligatory; the use of extraordinary means is optional.

Ordinary means: a technical term in ethics that means obligatory.

Daniel P. Sulmasy, M.D., is the Kilbride-Clinton Professor of Medicine and Ethics in the Department of Medicine and Divinity School at the University of Chicago, where he is associate director of the MacLean Center for Clinical Med

Comments

Laura Lathrop, DNP | 11/28/2010 - 6:28pm

As a nurse practitioner I work with many persons and their families in intensive care units, most of the time at the end-of-life. I see the stress family members go through trying to decide what their loved one would want them to do because the person is not able to direct care. Your article serves our community well and is very clear. Too often families sadly report they never had discussions with their family member.  I also endorse the need to discuss quality of life values.  Too often providers are left to sort out “If I am in a terminal condition”. Please, there are a lot of conditions that are worse than terminal conditions.  How much does one want the high-tech environment to continue extraordinary measures if there is the potential to prolong life, even for a short time, but at the expense of suffering?


        A piece that seemed to be missing in this thorough article is encouraging a discussion with one’s provider with the advanced directive in hand. The provider is likely to be able to speak to the medical conditions and ongoing medical risks as the illness advances. However, these are not quick “in and out” conversations that are fit into the visit while monitoring several medical conditions. During the health care debate we heard about “death panels”. This was part of the new legislation meant to reimburse providers for the lengthy discussion advanced directives may take. It is sad that the scare created about “death panels” became too controversial and as a result payment for the time providers spend in advanced directive discussions was removed from the final health care bill.

CHARLES FAHEY MSGR | 11/24/2010 - 12:51pm
An exquisite article not only on advance directives but our (Catholic) all too often hijacked tradition on end of life care and decision making. The article is on its way to the several  health care institutions in which I am engaged.

May be so presumptuous to add some thoughts about health agents which I too think is the preferable approach. The proxy should understand how difficult this might be and have the capacity to engage in conversations with persons that can be rather difficult.There should be an ongoing contact that offers the opportunity to reaffirm both the content and the relationship. The preferences should be stated in values rather than clinical details. A brief case study; My niece, Sharon and I. "Sharon we agree to this because of our love for one another. It is like an engagement. Additionally you are an attorney, a member of health care facility boards and not easily intimidated.You will be with me not only at the last minute but in any serious moment (as I have been with you and your family over the years). I give you no instructions in the case when I am unlikely to be able to speak for my self now and in the future. If I cannot say another prayer, give or get another hug and enjoy another martini then let me go into the new presence of our God who chooses to be known as our Father." . . . sealed with a hug as well as signatures.
Mary Keane | 11/23/2010 - 2:45pm
Thank you for the clarity that you have added to this discussion.  I have always been under the impression that advance directives are not only individually appropriate but also serve to guide the consciences of loved ones in decision making (hence the term, "directive").  It is technically true that an attorney is not necessary to create an advanced directive.  However, depending on the individual, obtaining legal preparation or review of a directive ought not be too dear, while failing to have one can precipitate extraoardinary costs.  There are bar associations that offer public information that can help prepare for executing a directive and help formulate questions for counsel (thereby reducing costs).  The ABA provides a consumer guide to advance directives and the National Academy of Elder Law Attorneys offers general information, to be found at www.abanet.org/aging/toolkit and www.naela.org.  (For what it may be worth, I have no affiliation with either of these organizations.)
LAWRENCE HANSEN | 11/20/2010 - 7:32pm
I recently attended a lecture given by Dr. Sulmasy in which he discussed the limitations of the Advance Directive and Substituted Judgment.  In that light, I recommend that interested parties also read his article, "Substituted interests and best judgments: an integrated model of surrogate decision making," which appears in the latest issue of the Journal of the American Medical Association, as well as David Kelly's excellent book, Medical Care at the End of Life: A Catholic Perspective.  These are both good resources on these subjects.
Charles Erlinger | 11/20/2010 - 11:48am
Excellent article.  Thanks.  Good writing, too.
NICHOLAS CLIFFORD | 11/19/2010 - 5:26pm
Dr. Sulmasy's piece strikes me as being extraordinarily sensible and sane. And since I am at the moment filling out an advance directive, extraordinarily useful. Many thanks for publishing it.

As for Mr. Dion's comment about crying: I don't really care whether people cry or not, but I intend to be quite specific about the sort of music that I want - and it is NOT to include the vapid, tuneless "hymns" that clutter up Catholic mass books, missalettes, and the like. Mozart, Bach, Vaughan Williams, and composers like them, please!
PAUL DION | 11/19/2010 - 4:08pm
My advance directive: No Crying at my Funeral.