When Sallie Morton had a stroke two years ago, relatives began taking care of her in her home. She was able to swallow soft foods but unable to move her right side or speak, and her family suspected she was not aware of their presence. Recently she was hospitalized with a severe urinary infection, and her kidneys eventually stopped functioning. The family and her doctor then faced a decision: While it was possible to manage her kidney failure with dialysis, should it be done?
The dilemma presented them not so much with a medical question as a value question. There is general consensus in our society that the standard the physician and family should use in such cases is not what they would choose for themselves, but what the patient him-or herself would choose. Assuming that the response is within the range of morally acceptable options, how can family members and physicians follow the wishes of a patient who is unable to talk? How might the family of Sallie Morton have learned whether she would have wanted to remain in her current condition a few more months or years, or go to be with the Lord?
While discussion among family members is the most important answer, over the past 15 years, specialists in medicine, ethics, and law have also developed documents that let individuals express to their families and physicians their wishes about treatment should they lose decision-making capacity. Collectively these documents are called advance directives. Although they may take many forms, advance directives are of basically two types: those that detail what types of treatments the person would or would not want under certain conditions, and those that name a proxy decision maker, sometimes also called a surrogate.
Why Advance Directives?
One impetus in the development of advance directives has been the technological advances that make difficult choices part of daily medical treatment. Before the day of dialysis machines and ventilators, people died if they went into kidney or respiratory failure. These technologies have saved many lives, but they have also raised legitimate fears in many that their dying process might be unnecessarily prolonged. Many patients fear that the “technological imperative”—the inclination to use a treatment just because it is available—will be the value used in making decisions for them.
A second impetus to the development of advance directives has been changes in the doctor-patient relationship. Instead of having one family doctor, many patients see several specialists. And because the patients or their doctors are more likely to move away than in the past, or because their employer may change to a more competitive managed-care plan with different physicians (as in HMOS), they do not develop the long-standing, trusting relationship that used to be more common in the past.
Living wills are the best-known type of advance directive. These are statements that request the withholding or withdrawing of certain treatments under certain conditions. Most use general terminology such as “no reasonable hope of recovery,” or, when it comes to treatment measures, terms such as “extraordinary,” “heroic,” or “life-prolonging.” Some allow inclusion of individualized statements to give instructions about particular treatments, such as the use of ventilators, resuscitation, or dialysis. Some state-approved documents include restrictive wording, such as “terminally ill and imminently dying,” and some specifically prohibit the withholding of artificially administered fluids and nutrition. First introduced in 1967, living wills did not attract much attention until Karen Quinlan’s family went to court in 1976 to seek permission to turn off her ventilator. Forty-five states have since given legal status to living wills, though each state has variations in allowable wording, documentation requirements, and other details.
Proxy statements are a more recent development. Their purpose is to name someone to be a substitute decision maker should a person become unable to make decisions. All U.S. jurisdictions have long-standing statutes that allow a person to make a “durable power of attorney,” which designates an “agent” with authority to make decisions on behalf of the “principal” after she or he loses decision-making capacity. While these laws were originally enacted simply to allow business decisions and transactions, many states (28—with more on the way) have enacted legislation that permits the creation of a “durable power of attorney for health care” or the naming of a “health-care proxy.” The person using a proxy statement is essentially saying, “This person I name knows me well and I trust him or her to make decisions consistent with my philosophy and wishes.” Some such documents merely name the agent, and others go on to give specific guidance to the agent about specific treatment desires. Some state-prescribed documents combine the elements of a living will and a proxy statement.
Drafting a living will is useful as a statement of your personal values and desires, but because the wording is often vague or ambiguous, and because it cannot address every conceivable condition that develops, the document by itself may be of little practical help should it be necessary to turn to it. Naming a proxy, on the other hand, provides a stand-in so that your physician can explain your situation to someone who knows you. That person can then provide the guidance that ensures the decision reached is consistent with your values.
Advance Directives: Pros And Cons
But are advance directives either necessary or good? When living wills were first proposed, many Christians were skeptical of the intent and consequences of their legalization. In 1977 I testified before the Vermont State legislature that, while I endorsed the concept of the living will, I was opposed to passage of proposed legislation to legalize the document in Vermont because I felt it unnecessary. It was, and is, common practice to withhold or withdraw life-sustaining treatment from patients without decision-making capacity at the request of their families when it is clear the person cannot recover and would not want such maintenance. I was also concerned that if living wills became common, it might become impossible to make limitation-of-treatment decisions for people who had not executed such a document.
A number of Christians have also voiced theological concerns. Some note that living wills were and are vigorously promoted by the “Society for the Right to Die,” which had earlier been known as the “Euthanasia Society of America.” There was grave concern that their legalization would be one more step on a slippery slope to mercy killing. Some also believe that such documents are unnecessary because God is sovereign, as recognized by the writer of Ecclesiastes when he wrote “There is a time for everything … a time to be born and a time to die” (Eccles. 3:1–2, NIV).
In the 15 years since I testified against legalization of the living will, more technological advances and further erosion of the doctor-patient relationship have convinced me that it is of great value in the current situation. Verbal and written statements of my patients have helped me with difficult medical and ethical decisions on many occasions. My own durable power of attorney for health care is a source of comfort to me.
Nuts And Bolts
Many people feel there is no need to consider an advance directive until they are of advanced age or are diagnosed with a terminal illness. However, illnesses or injuries that might render someone incapable of making decisions can affect anyone. Discussions about the individual’s values, treatment desires, and advance directives should be part of every complete physical examination and every estateplanning discussion.
How do Christians who are interested in finding out more about advance directives get started? Documents are generally available from physicians, attorneys, state or county medical societies, health-care facilities and agencies, and citizen groups established to promote their use (see “Where to Write,” on this page, for more information on two groups that can help). In those states with legally sanctioned advance directives, the prescribed documents are designed to be filled out by the individual and, as a rule, do not usually require the assistance of an attorney.
How do you decide which document to use? One that is legally sanctioned in your state is preferable. If your state has legislation authorizing either living wills or proxy statements, the choice is yours. You may even fill out both. Discussions with your family, physician, or attorney may help you decide which is most appropriate for you. As noted above, the proxy statement may be of more practical value to your physician and family.
Not every state has statutes establishing living wills or health-care proxy statements. And, in many cases, individuals have designed their own advance directives or have used generic documents distributed across state lines. Are these valid? We must remember that the ultimate goal of advance directives is not a properly signed and witnessed piece of paper, but careful, clear communication of values and desires between the patient and his or her physician and family. Even a handwritten statement saying, “I want my wife to make my decisions if I get too sick to talk,” carries considerable moral weight. Such a nonstandard directive would be of less value, however, if there should be a disagreement among family members about the appropriate decision. If the disagreement goes to court, a judge would decide whether the document should be honored. The legally prescribed form, properly executed, has the same amount of moral weight and significantly more legal weight.
However, a properly executed advance directive by itself is of little use unless accompanied by further discussion and elaboration. If you name a health-care proxy but do not discuss with him or her your values and wishes, he or she may not be of much help to the physician when approached for a major decision. If you sign a living will that simply asks for “no heroic measures,” it will not give much guidance unless you have discussed with your doctor and family what heroic means.
Who should you choose for your health-care proxy? Most people choose a spouse or an adult child. Many forms allow or encourage the naming of an alternate proxy in case the one you name is unable or unwilling to act on your behalf. Close relatives make the most logical choice, since they are likely to know you best. You should, however, be careful to choose people who will be willing to follow your instructions and will not be burdened with guilt if the instruction you give them results in your death a few days or weeks earlier than might have been the case with a different decision. One advantage of advance directives is that such burdens can be reduced; it is actually the patient who is making the decision. The proxy is merely carrying out directions.
While Christians faced with difficult treatment decisions for loved ones can be comforted by the presence of the Holy Spirit and the support of their churches, they will be helped as well if thoughtful discussions about treatment preferences have occurred. The completion of an advance directive is one mechanism for making sure we are good stewards of the lives and choices God has given us
Blank Check For An Unknown Doctor
Rita Marker is director of the International Anti-Euthanasia Task Force. She spoke with CHRISTIANITY TODAY project editor Thomas Giles about some of the dangers and benefits of advance directives. She explains her reservations about living wills and offers words of caution on durable powers of attorney.
Many people—even some opposed to euthanasia—see living wills as a way to ensure that patients’ wishes are respected. Do you agree?
Signing a living will is like signing a blank check and handing it over to an unknown doctor. Because living wills are exceptionally broad documents and cannot cover everything, they have to be interpreted and carried out by the attending physician. So, when Great-aunt Minnie signs this living will and says, “I don’t want any heroic measures or life-sustaining treatment,” she may be picturing a heart/lung machine. But when “anything which sustains, maintains, or replaces vital function” is interpreted as food and water, it takes on a far different meaning.
Also, living wills are interpreted by the attending physician—not necessarily your family doctor. Unless it is designated in your advance directive that “I direct my attending physician who is to be Dr. So-and-so,” then there’s a problem.
What if other pertinent details are spelled out in the body of the document?
That is making an assumption that one can do that. There have been a number of attempts to do so. A person might say, “I do know if I were in this condition, this is what I would not want.” But there is no way a person can foresee many specific situations. For instance, a person might stipulate that he or she does not want to be hooked up to a ventilator—without envisioning the possibility that a ventilator may at some point be necessary only temporarily.
Durable powers of attorney allow the patient to designate someone as decision maker. To what extent would this avoid the problems you have mentioned?
I have suggested this to people for a long time. But I do have one area of real concern. Durable-power-of-attorney laws, by implication, allow your agent to make any decision you would have made—with total immunity for the doctor and the decision maker, no matter what. That’s a real scary thing given the way our laws are going. If, for example, a state passes a so-called aid-in-dying law, such as was recently defeated in Washington State, your agent might someday be able to request a lethal injection for you—with impunity.
Has the Anti-Euthanasia Task Force developed any power-of-attorney documents that address this concern?
We have. And we feel such documents are necessary for two reasons. First, as a result of the Patient Self-Determination Act, people are being hit by these decisions even if they go in with a broken leg or are in the late stages of labor. Thus, they could inadvertently sign an advance directive without really thinking about what they’re signing.
Second, it has become increasingly important to specifically name the person you want to make your decisions as your agent. Instances have developed in the last year where the family says a patient wanted to receive this particular type of treatment or care but is challenged by doctors who say, “No, this isn’t a good thing.”
Our document contains two important distinctives. One, it specifically prohibits and defines euthanasia. While living-will laws prohibit euthanasia, they do not adequately define it.
Also, our document makes specific reference to food and fluids—though it does not say you must always, under all circumstances, provide food and water.
What principles should guide the agent who is making critical decisions for someone else?
We should always respect human beings because of who they are—not what they can do. Every life has equal dignity, which comes from God.
And we have to recognize our own limitations. We cannot cure everything. Therefore, the question is: What do we do? We can continue to care or we can kill. And that’s exactly the crossroads our society is at now. We can say, “All right. We recognize those limitations. We’re not going to subject this person to futile or excessively burdensome and painful treatments. But we are going to continue to care, and we will do nothing that will make this person die. We will not kill.”
