Nutrition and Hydration at the End of Life
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The following reflections aim to clarify the complicated topic of end-of-life decision-making, especially as it relates to artificial nutrition, hydration, and other life-prolonging technologies. It is my hope that priests and other ministers may find some helpful guidelines as to how to deal with end-of-life cases, as well as how to provide effective and compassionate pastoral care during difficult cases. My aim in these pages is three-fold: (1) to present two main types of cases related to end-of-life decisions; (2) to explain the Catholic perspective on these decisions; and (3) to offer two methods in dealing with these cases the best we are able. Given the rapid changes in technology and in our understanding of what constitutes "life" and "death," making the proper decision is more and more critical. It is therefore crucial that those called upon to give the correct pastoral advice understand both the issues at stake as well as the proper ways to make the right decision with as much confidence and clarity as possible.
Two types of cases
The two cases we shall use are (1) the "basic" end-of-life case that few people would have problems with, and (2) the extraordinary, difficult, "exceptional" case that at times seems to challenge our most basic convictions.
First, there is generally agreement among theologians that artificial nutrition and hydration is a medical treatment. When it comes to such a decision at the end of life, the question is always the same, "To treat or not to treat?" There is no doubt that in the normal course of things, nutrition, hydration, and basic care are typically considered absolute and required by human dignity, but once such things must be medically administered, it becomes much more difficult to decide whether such provision is of any help to the patient.
In the basic end-of-life case there are certain fundamental beliefs that are usually shared by everyone, such as the belief that life is a great gift and a good to be treasured and preserved as much as possible. Yet we also understand that life on this earth is not an absolute good, and we are therefore not called to postpone its end as long as technologically possible. There are higher goals and ends that may lead us at some point to relinquish this great good of life for a higher good and a nobler end (evidenced by our belief in Christian martyrdom, defense of our country, and the blessedness of eternal life).
In the medical profession, it is clear that a moment can be identified when the obstinate pursuit of prolonging life is not a moral obligation. The moment that there is an underlying pathology–a disease which is claiming a patient's life–the ethical obligation to provide extraordinary or disproportionate treatment that would be more burdensome than beneficial to the patient ceases. It is important to point out that in end-of-life cases, "ordinary and extraordinary" and "proportionate or disproportionate" are moral components and not necessarily medical categories. A treatment such as medically provided nutrition and hydration, for example, can therefore be medically ordinary yet morally extraordinary.1
What constitutes a morally extraordinary treatment? Simply put, it refers to a treatment where the human burden of the treatment outweighs its human benefit for the patient. Such an ethical determination can only be made on a case-by-case basis, by taking into consideration a variety of factors, including the overall condition of the patient, the pathology involved, the imminence of death, the pain involved in the treatment, its side effects, as well as its potential contribution to a patient's recovery. These factors must be analyzed by competent medical personnel, the patient and the patient's family, leading to a conclusion of whether a medical procedure is worthwhile for the patient. When the determination is made that the burdens of a particular procedure outweigh its benefits for the patient, the procedure is morally extraordinary and therefore optional. Conversely, when its benefits outweigh the burdens for the patient, the procedure is morally ordinary and obligatory.2 It is important to point out that in these basic end-of-life cases it is always clear that the cause of death for a patient is directly connected to the underlying terminal and irreversible illness. Usually in these cases, the death of such a patient is perceived as a blessing and an end to suffering as well as a relief to the family members, regardless of the pain that comes from the loss of a loved one.
The second category of decision-making is much more complicated. Here are the cases where patients or their designated representatives ("proxies") have refused any kind of medical intervention related to nutrition and hydration. Oftentimes these involve cases where a patient suffers with dementia or Alzheimer's disease, is in a persistent vegetative state (PVS), or has experienced any other kind of brain affectation. These cases have become so difficult to deal with because many of these patients lose the ability to eat on their own and require artificial nutrition and hydration. If artificial nutrition and hydration is not provided, the patient will certainly die, not of an underlying pathology or illness that is terminal and irreversible, but due to the lack of nutrition and hydration. Even though I believe that stating that such patients are "starved" or "dehydrated" to death is not the best way to categorize these difficult cases, such statements at least make it clear that the direct effects of the lack of nutrition and hydration, as a consequence of such patients having lost the ability to eat and drink on their own, are what brought about their deaths.
In a society where we consider that all should have at least their basic needs of food, water and care met, these situations certainly cause great distress. Due to the general perception today that most people fear many of the technological advances that at the end of life may take away some of their autonomy and freedom, along with the frightening possibility of having to die with life-prolonging mechanisms that can prove futile, the secular perspective seems to be leaning in the direction of presuming against artificial nutrition and hydration for all patients who need it.
In our first kind of case, the basic end-of-life case, we are confident that by following some clear moral guidelines, we can determine when there is no ethical requirement to provide artificial nutrition and hydration at the end of life; here it is clear that there is a terminal and irreversible pathology bringing about the death of the patient. At such a point, medically provided nutrition and hydration will not only be futile and incapable of restoring the patient to health, but also becomes a burden to the patient that far outweighs any kind of benefit. When it comes to that moment in the basic end-of-life case, most families clearly realize that providing artificial nutrition and hydration will only increase the pain and the agony of their loved one.
However, in the second, more difficult kind of case, in which there is not a clear, irreversible pathology, there exists an understanding that the lack of nutrition and hydration would be the immediate cause of death. In such a scenario, little opportunity would be provided for possible recovery or for the alleviation of the burden of malnutrition and dehydration, which artificial nutrition and hydration could have provided. In these cases, denying a non-dying patient artificial nutrition and hydration actually constitutes "passive" euthanasia, that is, intentional euthanasia by the omission of food and water.
An example from Catholic teaching
So when faced with the very difficult cases related to artificial nutrition and hydration, what analysis should we follow? How should we assess these cases in order to make sure we act in a reasonable, prudential, moral and loving way? There will certainly be plenty of debate and argument related to these difficult cases, but the fact that there is no clear consensus on these difficult cases does not exempt us from the responsibility of searching for answers and an ethical process to help us discern.
In the wake of many such cases, even before the Terri Schiavo case, John Paul II attempted to bring some clarity about artificial nutrition and hydration in those very difficult cases. In March 2004 he addressed the International Congress on Life Sustaining Treatments and Vegetative State, being held in Rome. Two things are important to point out: (1 ) the papal allocution given on that occasion was intended to apply directly to PVS cases, and (2) the reasoning of the allocution has been used by ethicists and theologians to shed light on other similar conditions that would require the administration of artificial nutrition and hydration.
The Catholic tradition generally corresponds to the guidelines of the Ethical and Religious Directives for Catholic Health Care Services (ERD).3 These are guidelines issued by the U.S. Catholic Conference of Bishops under a series of introductory paragraphs and numbered directives that refer to several particular topics in medical ethics, including end-of-life care. Different from the secular view, which generally presumes against the use of artificial nutrition and hydration, the ERD expresses in directive §58 that there should be a presumption in favor of providing nutrition and hydration to all patients, even if medically assisted, as long as this is of sufficient benefit to outweigh the burdens involved.
Furthermore, in his 2004 allocution Pope John Paul II clearly stated that in the case of PVS, artificial nutrition and hydration is in principle an ordinary and proportionate means of preserving life. Therefore in the case of PVS patients, who are not suffering from any other illness, artificial nutrition and hydration would be considered obligatory to the extent to which it accomplishes its proper finality (namely, the hydration and nourishment of the patient). Only in this way would suffering and death by dehydration and starvation be prevented. Since the understanding of euthanasia is not only an action that brings death to the patient but also an omission of ordinary means, not providing artificial nutrition and hydration to a PVS patient would constitute in Catholic teaching an act of passive euthanasia, which is clearly condemned by the Catholic Church.
It is worthwhile to consider whether this teaching would apply also to other cases, such as patients with Alzheimer's disease or advanced dementia. It would seem logical to conclude that in these cases such teaching would also apply, but in the current bioethical discussions related to these other conditions, it is important to notice that the analysis of each individual case is very important. The same Catholic tradition recognizes that there are some situations in which the use of a feeding tube is not required. The same Ethical and Religious Directives allow for the withholding of artificial nutrition and hydration when the burdens to the patient outweigh the benefits (cf. §57). For a patient advanced in age, with severe heart disease in addition to dementia, still able to eat but losing weight, a PEG (percutaneous endoscopic gastrostomy) tube could rightly be considered extraordinary, and therefore optional, treatment due to the deteriorating condition and advanced age of the patient. The Church has also recognized that artificial nutrition and hydration should not be pursued when it is not able, in the language of John Paul II's allocution, to "accomplish its proper finality, which in the present case consists in providing nourishment to the patient..." (cf. §4). If a patient is losing weight, and even after the insertion of a PEG tube continues to lose weight, the PEG tube is not required ethically. A particular challenge arises in patients with dementia who tend to pull out their feeding tubes in their confusion. Many times when this happens, the feeding tube cannot be easily replaced. In such cases it may be morally acceptable to leave the PEG tube out and forgo artificial nutrition and hydration.
When I think of why there is so much confusion about these matters, I think a major factor is the high level of visibility these cases have received. We can still conjure up the image, broadcasted over and over again on television, of Terri Schiavo looking around the room during one of her waking cycles. There is also a relative lack of understanding of the medical facts. There are different viewpoints among theologians and ethicists about the dilemmas presented to families providing long-term care to their loved ones. There is also confusion about whether artificial nutrition and hydration are to be considered normal care or extraordinary medical treatment. Keep in mind that when we talk about artificial nutrition and hydration as a medical treatment this is because of the way it is provided to the patient. One thing to consider is that if we think of medical treatment as something offered to cure disease, then in such a case the administration of artificial nutrition and hydration is not "treating" any condition, but simply providing nourishment and fluids to the patient.
In his 2004 papal allocution (the least-binding form of papal pronouncement), John Paul has helped to clarify some very significant issues, not shying away from important factors such as "the heavy human, psychological and financial burden" of caring for those in PVS. But, overall, the allocution dealt primarily and directly with what constitutes a case of PVS. It is clear that the guidelines it offered also could be applied to similar cases in which there is no terminal and irreversible pathology or illness present, or in which there is a very slow progress of the disease which would require artificially provided nutrition and hydration as basic care for the patient. Perhaps by looking at other cases which may not be clearly PVS, we can attempt to categorize them more closely in order to assess the impact of John Paul II's allocution. In general, there are four categories into which cases fall, and the response to each case is clear:
(1) When there is an unconscious and imminently dying patient–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.
(2) When there is a conscious yet imminently dying patient, artificial nutrition and hydration is useless and possibly burdensome. Artificial nutrition and hydration may be desired by the patient for comfort and may be provided.
(3) When there is a conscious patient who is irreversibly ill yet not immediately dying, even if he or she 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 therefore be provided until there is further evidence that it has become unreasonably burdensome or a new situation has surfaced that requires re-evaluating the treatment.
(4) Finally, when there is a patient who is unconscious yet not dying, artificial nutrition and hydration should be supplied. Such procedures sustain life and usually there is no evidence that they provide unreasonable burdens. These are usually the most difficult cases to deal with due to the above-mentioned reasons.
Two methods to help us develop a greater sense of confidence
We have mentioned the two different kinds of cases in which one much consider whether it is ethically necessary to administer artificial nutrition and hydration: the basic end-of-life cases and the more difficult cases, which usually receive most of our attention and discernment. Since this is so, there should be a growing level of confidence in dealing with these cases when it comes to being able to determine the complexity of the case. Not every case is a difficult case. Actually I would venture to say that most cases are fairly simple and straight-forward. No human life is to be taken lightly, but at the same time, medical practice and expertise can offer us guidance in making these decisions. Doctors, nurses and medical personnel, even in the midst of knowing that medicine is not an exact science, have gotten better at being able to assess end-of-life cases and what to expect in these cases. In the basic cases, medical personnel–as well as family members and pastoral agents–should keep in mind some ethical principles that help us find adequate and prudential solutions in such situations. Let me summarize these basic principles briefly:
- Life is an incredible and sacred gift,
- yet life is not an absolute good.
- So, morally speaking, not everything that could be done to preserve life needs to be done.
- It is important to understand the distinction between ordinary and extraordinary treatments, because this is where moral obligations enter.
- The distinction between proportionate and disproportionate treatments, on the other hand, is based on the benefit/burden ratio for the patient, and these treatments are therefore morally optional. This means that patients, family members or pastoral agents could choose to make use of them (or not) and still be acting morally.
- 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.
What to do, then, with the most difficult cases?
I believe the most difficult cases require a more careful analysis. In these cases I believe another set of guidelines should apply until the situation changes.4 To begin, when it comes to human life, we must never be minimalists in considering what to do for patients. When there are doubtful, difficult cases, we should err on the side of caution and maximal care for the person, which usually includes providing artificial nutrition and hydration. Human qualities that help us in our coexistence should be considered: care and charity should always prevail over selfishness of any kind.
Our actions toward 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. Admittedly, doctors do not have all the answers, and for all of us there is a need to accept our limitations and to err on the side of prudence. For reason and prudence must be balanced: in the difficult cases, reason reminds us that life is a gift, while prudence tells us that life is a good, but not an absolute or ultimate 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, recklessness results. In difficult cases we must recognize that there is usually a process unfolding allowing us eventually to grasp what is truly happening, enabling us not to hasten to an imprudent or uncharitable decision.
When it comes to end-of-life cases, providing nutrition and hydration, or just being in solidarity with our fellow human beings, remember the words of Christ: "for I was hungry and you gave me to eat. I was thirsty and you gave me to drink... insofar as you did this to one of the least of these brothers or sisters of mine, you did it to me" (Mt 25:35, 40). Consequently, whatsoever we neglect to do for the least of his brothers and sisters, we neglect to do for Him.
1 This is one of the main reasons why the Declaration on Euthanasia from the Congregation for the Doctrine of the Faith, issued on May 5, 1980 in Rome, decided to present the categories of proportionate or disproportionate treatments in place of ordinary and extraordinary–to clarify this difference and avoid the confusion between the medical and the ethical categories.
2 See Life Issues, Medical Choices: Questions and Answers by Janet E. Smith and Christopher Kaczor (Cincinnati: Servant Books, 2007) for an excellent resource.
3 Ethical and Religious Directives for Catholic Healthcare Services, Fourth Edition, Issued by NCCB/USCC, June 15, 2001.
4 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), 134-36. I find this short section of his work to be very helpful in developing a more Christocentric and virtue-based approach to dealing with moral decision-making today, following the approach of the encyclical Veritatis Splendor by Pope John Paul II.
Fr. Jose I. Lavastida is the president and rector of Notre Dame Seminary in New Orleans. He has a concentration in bioethics and his doctoral dissertation was published under the title Health Care and the Common Good. He is also a novelist; his first novel is entitled Better for One Man to Die, and is based on the life and ministry of St. Anthony Marie Claret in Cuba. Fr. Lavastida was born in Cuba, and has been a U.S. citizen since 1974. He was a chaplain and lieutenant commander in the U.S. Navy, serving with distinction in Iraq and receiving the Presidential Unit Citation from President George W Bush in 2003.
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