End-of-life decisions have become very complicated today. Even priests who have received extensive seminary training in theology oftentimes find themselves struggling in making sound decisions related to end-of-life care.
This article will discuss this topic of end-of-life decision making and offer some basic guidelines for priests and ministers in order to provide moral, responsible and effective pastoral care.
I will present two main cases related to end-of-life decisions, a particular contribution coming from the Catholic tradition, and two methods to follow in order to foster greater self-confidence in ministers who have to deal with such cases. The end-of-life decisions will deal primarily with providing nutrition and hydration, but in addressing this topic the hope is that it will shed light on how to handle other similar end-of-life situations.
Two Main Cases
The two cases I have in mind are the “basic” end-of-life case and the extraordinary and exceptional case that at times seems to challenge our most basic convictions.1
In the “basic” end-of-life case there are some preconceptions that are typically shared by everyone. These are things such as life being a great gift to be treasured and preserved as much as possible, yet at the same time acknowledging that life is not an absolute good. There could be higher goals or ends of life that may call a human being to relinquish this great good for a higher good. Love of God, religious faith, family and defense of country could be ideals for which someone may be willing to relinquish life.2 In health-care provision there is a moment when doctors can identify that a patient dealing with an underlying pathology that is terminal and irreversible has no moral obligation to obstinately pursue the prolongation of life or to provide for extraordinary or disproportionate treatments — a moral category — even if what is provided is a medically proven treatment. Artificially provided nutrition and hydration is a proven, ordinary medical treatment, yet it can be morally extraordinary under certain circumstances.3
In the extraordinary end of life case there is a greater complexity that can cause great anxiety. These are cases related to patients who have refused medical treatment, who suffer from dementia, Alzheimers, persistent vegetative state (PVS), or any other kind of brain impairment. These patients should not experience death due to a lack of nutrition and hydration.
In the basic case there should be a sense of confidence that, by following some clear moral guidelines combined with acknowledging medical expertise which can determine that an illness is terminal and irreversible, decisions can be confidently made when there is no ethical requirement for disproportionate treatment that can only serve to unnecessarily prolong the life of a patient while increasing the pain and the burden. However, in the second kind of case, since there is no clear terminal and irreversible illness, or perhaps an irreversible disease that is not terminal, there is an understanding that removing basic care such as nutrition and hydration would be the immediate cause of death, and that little opportunity was provided for possible recovery or alleviation of the burden of malnutrition and dehydration which artificial nutrition and hydration could have provided.
An Example from Catholic Teaching
So, when faced with the second kind of case, the difficult case, what analysis should we follow? During an allocution4 to a congress in Rome to discuss the persistent vegetative state, Pope John Paul II addressed these difficult cases and offered some clarity as to what the Church expected when dealing with such cases. Even though the allocution was directed specifically to patients in PVS, there could be a legitimate application of the allocution to other difficult end of life cases.
The Catholic tradition has followed the guidelines given by the U.S. bishops in the Ethical and Religious Directives for Catholic Health Care Services (ERD).5 Directive 58 mentions that there should be a presumption in favor of medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved. The benefit is to be defined very narrowly as simply the nutrition and hydration of the patient. Suffering and death as a cause of dehydration should be prevented. In the case of PVS, according to the allocution, not providing artificial nutrition and hydration is equivalent to passive euthanasia, namely the omission of proportionate means.6
A question that arises is whether this teaching of the allocution related to PVS cases also applies to other difficult cases like the ones mentioned above. It is important to note that the analysis of each individual end-of-life case is still very important to consider. The same Catholic tradition and directives recognize that there are some situations in which the use of a feeding tube is not morally required. With other cases which may not be PVS, perhaps we can attempt to look at them more closely in order to assess the impact of the allocution.
When there is an unconscious and imminently dying patient, by this I mean someone suffering from a progressive illness and rapid deterioration, in whom the dying process has begun and cannot be reversed, artificial nutrition and hydration would seem in general to be useless and an unreasonable burden.
When there is a conscious yet imminently dying patient, artificial nutrition and hydration is useless and possibly burdensome. Artificial nutrition and hydration, though, may be desired by the patient.
In the case of a conscious patient who is irreversibly ill yet not immediately dying, even if that patient is beyond cure or reversal of the disease but able to function to some degree, artificial nutrition and hydration is not useless and usually not unreasonably burdensome. Artificial nutrition and hydration should be provided until there is further evidence that it has become unreasonably burdensome or a new situation has surfaced that requires reevaluating the treatment.
Finally, if a patient is unconscious yet not dying, artificial nutrition and hydration should be supplied. Artificial nutrition and hydration sustains life, and usually there is no evidence that it provides an unreasonable burden to the patient unless a new condition develops that proves to make artificial nutrition and hydration unnecessarily burdensome to the patient. These are usually the most difficult cases to deal with due to the above-mentioned reasons.7
Two Methods to Help Us Develop a Greater Sense of Confidence
A. Not every case is a difficult case. Actually I would venture to say that most cases are fairly straightforward. No human life is to be taken lightly, but medical practice has become better with time in being able to assess end-of-life cases and what to expect. In the basic end-of-life case we should keep in mind the following ethical principles:
1) Life is an incredible and sacred gift.
2) Yet life is not an absolute good.
3) Morally, not everything that could be done to preserve life needs to be done.
4) It is important to understand the ordinary/extraordinary–proportionate/disproportionate treatment distinctions.
5) Proportionality is based on a benefit/burden ratio and has nothing to do with the condemned methodology of proportionalism.
6) Ordinary/proportionate treatments are morally obligatory.
7) Extraordinary/disproportionate treatments are morally optional. This means that patients, family members or pastoral agents could choose to side with making use of them and still be acting morally.
8) There is a presumption in favor of artificial nutrition and hydration insofar as it benefits the patient and is not more of a burden. This benefit must be defined narrowly.
9) Once the facts are studied, presumption gives way to facts.
B. What to do then with the most difficult cases?
I believe these cases require a more careful and prudent analysis. These are the cases in which there is no clear terminal and irreversible pathology but a kind of impairment or physically debilitating illness in which death is not imminent or directly connected at the time with the pathology.
In these cases I believe another set of guidelines should apply until the situation changes.8 Let me share some of these guidelines, recognizing that when I think about them I am also thinking of some of the religious principles that come from my faith tradition but that I believe are applicable to any worldview, even the secular one:
1. When it comes to human life, we must not be minimalists in considering what to do for patients. When there are doubtful, difficult cases, we should want to err on the side of caution and maximal care for the person, which usually includes providing artificial nutrition and hydration.
2. Human qualities that help us in our coexistence should be considered. Care and charity should always prevail over selfishness of any kind, especially when it comes to human life.
3. Our actions, especially towards those in any kind of misfortune, speak volumes about our notion of human solidarity and sacrifice. We become what we do. Our actions and intentions are critical in determining how we treat one another and how we expect others to treat us when we are the ones facing misfortune.
4. Medicine isn’t an exact science. We don’t have all the answers. There is a need to accept our limitations and to err on the side of prudence.
5. Reason and prudence must be balanced. In the difficult cases, reason reminds us that life is a gift; prudence tells us that life is not an absolute good. At what time does reason give way to prudence? One general guideline we could follow is to never attack life directly. When prudence is eliminated or maligned there is a recklessness that can result.
6. In difficult cases we must recognize that there is usually a process enacted that allows us to see in time what is truly happening and helps us not to hasten to an imprudent or uncharitable inhumane decision
When it comes to end-of-life cases, providing nutrition and hydration, or just being in solidarity with our fellow human beings, it may be good to remember how Jesus concluded His remarks in that passage on the Last Judgment from Matthew’s Gospel (Mt 25: 40): “… insofar as you did this to one of the least of these brothers or sisters of mine, you did it to me.” Consequently, whatsoever we neglect to do for the least of His brothers and sisters, we neglect to do it to Him.
1 In spite of objectionable and condemned methodologies in moral theology such as proportionalism, which try to work from exceptional cases, it is interesting to note that in the topics related to bioethics the careful case by case analysis is critical. That is particularly why it is so important to study difficult cases in bioethics, such as when it is moral to provide nutrition and hydration, since in this way possible developments in Catholic Christian teaching could be more readily discovered.
2 These higher goals or ideals have been critical in developing a more liberal position of not requiring artificial nutrition and hydration for patients in irreversible illnesses that render them unconscious if they would never regain what would be considered higher human functions such as reason, cognition, volition and intelligence.
3 This is the main reason why the Declaration on Euthanasia from the Congregation for the Doctrine of the Faith, issued on May 5, 1980 in Rome, decided to introduce the categories of proportionate and disproportionate treatments in place of the traditional ordinary versus extraordinary in order to clarify the difference between the medical and the ethical realities.
4 Original Italian versión published in L’Osservatore Romano, Sabato-Domenica, March 20-21, 2004, p. 5.
5 Ethical and Religious Directives for Catholic Health Services, Fourth Edition, Issued by NCCB/USCC, June 15, 2001.
6 John Paul II, Allocution To the Participants to the International Congress “Life Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas, March 20, 2004, No. 4.
7 See for this analysis Catholicism and Ethics by Rev. Edward J. Hayes, Rev. Msgr. Paul J. Hayes, Dorothy Ellen Kelly, R.N., and James J. Drummey, C.R. Publications Inc., Norwood, MA, pp. 161-2.
8 The following guidelines have been adapted from Livio Melina’s Sharing in Christ’s Virtues, (The Catholic University of America Press: Washington D.C., 2001) pp. 134-136. I find this short section of his work to be very helpful in developing a more Christocentric and virtue-based approach to deal with moral decision making today following the approach of the encyclical Veritatis Splendor by Pope John Paul II.
FATHER LAVISTIDA, a priest of the Archdiocese of New Orleans, is rector of Notre Dame Seminary in New Orleans.