1/1/2004
Nothing can be said so rightly that it can be prevented from being badly interpreted. - Baruch Spinoza (1632-1677)
These words of Spinoza have often come to mind as I worked on this article. I became more and more convinced that priests as shepherd of souls must take Spinoza’s words to heart when dealing with end-of-life issues. We will often find ourselves ‘‘fighting for words’’ adequate to express the mystery which St. Francis spoke of as ‘‘Sister Death.’’
It is a great joy and an awesome responsibility for a priest to shepherd a soul to eternity. It is God’s doing, of course, but to serve as His instrument is a great grace. To draw on the wisdom of Catholic teaching on how to live and die in the Lord will be of inestimable value for the priest looking to aid his parishioners on their journey.
How might a priest prepare for the task? Two documents will help: one is the United States Conference of Catholic Bishops’ 2001 Ethical and Religious Directives for Catholic Health Care Services, found on the web at this address: http://www.usccb.org/bishops/directives.htm (hereafter ERD). Part Five, ‘‘Issues in Care for the Dying,’’ is especially pertinent. The second is the National Catholic Bioethics Center’s six-page pamphlet: ‘‘A Catholic Guide to End-of-Life Decisions.’’
As you help others prepare for life’s final journey, your task is primarily, though not exclusively, one of spiritual support and prudent counsel. Such ministry places you on the front lines of the culture wars.
You are trying to help people find the middle ground between two extremes: one is a culture of death mentality that regards death as the solution to the problems of life (witness the push for euthanasia and physician-assisted suicide in American).
At the other extreme we find medical vitalism, ‘‘an insistence on useless or burdensome technology even when a patient may legitimately wish to forgo it’’ (ERD, Introduction to Part Five).
Paragraph 2278 of the Catechism of the Catholic Church reminds believers they have every right to refuse over-zealous treatment. Authentic Catholic teaching on the matter is eminently sensible: In medio stat virtus. Your parishioners should know this and take comfort in it.
I have heard it said, and perhaps you have as well: ‘‘It isn’t so much the death I fear; it’s the dying.’’ What is left unstated but implied is the specter of human suffering. Why suffering? Why pain? The ERD are replete with references to ‘‘suffering’’ (15 mentions) and ‘‘pain’’ (nine times.) We read in the Introduction to Part Five of the ERD: ‘‘One of the primary purposes of medicine in caring for the dying is the relief of pain and the suffering caused by it. Effective management of pain in all its forms is critical in the appropriate care of the dying.’’
While all of us shrink from the prospect of intolerable pain, truth be told, such dire situations rarely occur. Medicine is getting better at pain control. Most people die peaceful deaths. No one whom you counsel should ever feel obliged to forgo medications and pain relief even though such may bring about disorientation or produce unconsciousness. The Church does not oblige the faithful to forgo medical treatment for pain even when such treatment may deprive the patient of full consciousness or indirectly shorten life. The Church asks only that appropriate conditions exist before such medication be taken. In this regard, ERD no. 61 is especially pertinent.
Since the media can at times present so distorted a picture of the dying process, priests perform a great service for the sick and their families when they make them aware of Church teaching on palliative care. Redemptive suffering has its place in the authentic Catholic vision; so too does adequate pain relief.
A key moral distinction for end-of-life decisions is that between what is morally obligatory and what is morally optional. What is morally obligatory we are bound to perform; what is morally optional we may include or omit at our own discretion. In the seminary we learned to use the language of ordinary and extraordinary to make this distinction.
A medical procedure that carries with it little hope of benefit and is burdensome is deemed extraordinary and is not obligatory. For example, a person may judge in good conscience that the pain associated with an aggressive treatment for terminal cancer is too much to bear, and thus decide to forgo that treatment. Whether a particular treatment is excessively burdensome to an individual patient is a moral question that often requires a prudent guide. When the sick or their family members ask such questions, priests should be prepared to help them understand how to weigh the benefits and burdens in their particular situations. While the words are simple enough - benefits and burdens - how to translate them for a person will be an important task for the priest who may be asked to help. Fight for words, indeed.
To make good moral decisions, patients should receive all pertinent information about their condition, including the proposed treatment and its benefits, possible risks, side-effects, and costs. When patients act with free and informed consent, they may use the most advanced medical techniques even when these are experimental or involve a certain measure of risk. The patient may also interrupt such methods when they fall short of expectations of benefit, but such a decision should take into account the reasonable wishes of the patient’s family and the advice of the doctor. The patient may also consider the expense the treatment may impose on the family and the community at large (ERD, n. 57). When death is imminent, one may refuse forms of treatment that would only result in a precarious and burdensome prolongation of life.
One of the most thorny issues in health care these days is that of the provision of food and water. Courts from California (Robert Wendland) to Florida (Terri Schiavo) to Australia (a woman known only as ‘‘BWV’’) continue to wrestle with the issue which may be stated in this way: are food and water part of the care owed to patients which should as a general rule always be provided, or are food and water medical treatment which may be withheld at the discretion of the physician?
We must fight for words. Not long ago food and water were regarded as part of the care owed to patients as a bare minimum. Recently, however, some in the medical profession have been attempting to make the case for food and water being treatment, especially in cases when food and water have to be delivered artificially. Their reasoning: providing food and water is one thing; the provision of artificial (or medically-assisted) nutrition and hydration is something quite different, is it not?
Is there some clever linguistic sleight of hand going on here? We note the use of ‘‘artificial’’ or ‘‘medically assisted’’ and the substitution of ‘‘nutrition’’ for ‘‘food’’ and ‘‘hydration’’ for ‘‘water.’’ What to counsel parishioners who may ask for your advice on the matter? Priests may find ERD no. 58 helpful: ‘‘There should be a presumption in favor of providing nutrition and hydration to all patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient’’ (Burdens and benefits again - sound familiar?).
Parishioners often ask about Advance Directives. What is a ‘‘Living Will’’? An ‘‘Advance Medical Directive’’? ‘‘Durable Power of Attorney’’? ‘‘Health Care Proxy’’? Which is preferable and why? The answers to these questions and more are found in the NCBC’s ‘‘A Catholic Guide to End-of-Life Decisions.’’
We see once again the need for wrestling with language. The usefulness of an Advance Directive, which gives specific instructions for care, is limited because of its linguistic inflexibility. If circumstances change significantly between the writing of the Advance Directive and its implementation, the instructions may be of little value to those acting on a patient’s behalf, or may even hinder their freedom to make good decisions. There may also be a problem of interpreting the document when it is not clearly written. An Advance Directive often does not allow for adequate informed consent because one must make a decision about a future medical condition which cannot be known in advance.
One last reflection: when discussing end-of-life issues, try to steer clear of the expression ‘‘quality of life.’’ As we fight for words meaning what we want them to mean, remember this axiom of good communication: ‘‘It isn’t what you tell people that matters; it’s what they hear.’’ While ‘‘quality of life’’ may indeed have a perfectly legitimate sense, many in our society hear it and use it to suggest that some lives are not worth living.
[Priests may obtain a free copy of the NCBC’s ‘‘A Catholic Guide to End-of-Life Decisions’’ by writing to The National Catholic Bioethics Center, EOL Guide, 159 Washington Street, Boston, MA 02135-4325, or by calling 617-787-1900. Visit the NCBC’s website at www.ncbcenter.org.]
— FATHER KOPACZYNSKI, O.F.M. Conv., is director of education at the National Catholic Bioethics Center in Boston, Mass.
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