How do we want to die? While we have no ultimate say over that question, an Advance Directive can offer valuable guidance to those who may accompany us through life’s final stage.
It’s particularly difficult in American culture to talk about death and the dying process. Yet sooner or later, most of us will have to make decisions concerning the end-of-life care we want for ourselves or for those close to us. It may be that we will die suddenly, in a car accident or of a heart attack. Today, however, increasing numbers of us die in hospital or in an assisted living facility, away from home and accompanied, if at all, by only the closest friends or family members. Who will make the final decisions concerning the way we die? And on what grounds?
The question is a crucial one, because medical technology has progressed to the point where persons can be maintained, “kept alive,” even when (in liturgical language) “the soul is struggling to leave the body.” On the one hand, we do not want to bring about death prematurely. The Church quite rightly resists and condemns current pressures for euthanasia and physician assisted suicide. On the other hand, “medical heroics,” “keeping the patient alive at all costs,” represents a protocol more often pursued to avoid legal complications than out of a genuine concern for the patient’s welfare. How, indeed, do we wish to die?
Ultimately, each of us must answer the question for ourselves, insofar as we are able to make decisions regarding the terminal care we wish to receive. Some of us will want to benefit as much as possible from various therapeutic measures, in order to extend our life to the maximum. This may be motivated by a desire to spend as much time as possible with loved ones, or to have the time to prepare spiritually for death, by seeking reconciliation and devoting ourselves to prayer. Or it may be simply to avoid death for as long as we can. Others, particularly those whose quality of life has diminished significantly because of physical and/or emotional suffering, will prefer to forego treatment once they reach a terminal state, and allow death to come as easily and naturally as possible. Between these two perspectives there is a whole range of responses we might have to the prospect of imminent death.
In any case, given the possibilities and challenges of medical technology today, it seems advisable that each of us prepare for our dying by filling out a Living Will or other type of Advance Directive (AD) for health care purposes. Relevant forms can be obtained from law offices, many hospitals, and the state Department of Health. Copies of these should be distributed to close family members, the medical doctor and clergy. In themselves, however, such directives can often prove useless. Just as the medical team can ignore a DNR (“Do Not Resuscitate”) order on a patient’s chart while they rush to deal with a code blue, they and others can ignore, or forget, an Advance Directive, however carefully it may have been filled out and entrusted to those we count on to defend our interests. It is essential, therefore, that in addition to such directives we give to some trusted person—spouse, child, priest, friend—“Durable Power of Attorney for Health Care Purposes.” This means someone who will accompany us in our dying, in order to guarantee as fully as possible that we receive the kind and quality of care we want, as the directive indicates.
Requirements for Living Wills and Advance Directives differ by State, as do means for naming a health-care proxy. Often one can designate an “Agent with Power to Enforce” on the AD form itself. It is important to be aware as well of revocation procedures. Normally it is enough to tear up or otherwise destroy the declaration (making the fact known to persons concerned), or to substitute for it a written statement expressing the intention to revoke. A verbal revocation is usually acceptable if it is expressed to the attending physician, and may be made by the Agent if the patient is incompetent to do so.
A question that needs to be addressed concerns the meaning of “terminal illness.” Typically, this expression is used to refer to a patient whom the attending physician expects to die within six months. That is too long a period to be meaningful. “Terminally ill” should refer rather to someone who, from a medical point of view, has “entered the dying process”; that is, who presumably will die from some trauma or pathology within a matter of days or weeks, precluding divine intervention or an otherwise unexpected recovery.
Advance directives properly concern patients in this stage of terminal illness. They stipulate what, if any, applications of medical technology the patient desires (for example, dialysis, ventilator, antibiotics, intravenous feeding, transfusions); and they allow the patient to opt for purely palliative care, that is, medical care that aims less to cure than to provide pain management and other comfort as the dying process runs its course.
In the next column, we will reproduce an Advance Directive for Health Care form, provided by The Center for Bioethics and Human Dignity. This is a well-done, generic form that we may use (and modify) as we wish. Given the trauma often associated with modern medical protocols (Cardio-Pulmonary Resuscitation, for example, which especially in the elderly usually produces little more than cracked ribs; or chemotherapy in cases of advanced cancer), many people are coming to realize that a “painless, blameless and peaceful” death, free from technological intervention, is far more desirable, spiritually as well as physically, than one artificially prolonged by the truly extraordinary capacities of modern medicine.
The question each of us needs to answer through an Advance Directive is this: to what degree are those miraculous technological capacities appropriate and desirable for us, in our immediate situation? Can they hold out a reasonable possibility for cure? Or will they merely prolong and intensify the dying process, and needlessly delay our passage into the fullness and joy of life beyond?