This website and the non–profit organization Caring Advocates wish to offer ways for people to deal with challenging end–of–life circumstances that are consistent with their moral and religious beliefs.
Tube feeding was invented for newborns who would otherwise die from a gastro–intestinal obstruction unless they survived long enough to endure and to recover from surgery to repair their birth defects. Only later was tube feeding also offered to severely brain damaged patients. Prior to about 1975, then, any person who could not normally ingest food and fluid would die quickly.
In part due to the controversy about the fate of Terry Schiavo, new teachings to clarify the Catholic view were issued, starting in 2004. The reaction was intense debate around the world. Recent court rulings in New York State interpreted the law in the context of the patient’s Jewish (2005) or Catholic (2010) religion that set aside either the proxy/agent’s request, or the physician–signed Medical Orders for Life–Sustaining Treatment to forgo tube feeding for patients who suffered from Advanced Dementia.
More information about the 2005 (Jewish) case is at: Borenstein et al v. Joan Simonson et al, 8 M3d 481, 797 N.Y.S.2d 818. (A brief summary of the case is in the book, The BEST WAY to Say Goodbye.)
More information about the 2010 (Catholic) case is at: In the Matter of Carole ZORNOW; 2010 WL 5860446 (N.Y.Sup.) (A brief summary of the case is in the Second Edition of Peaceful Transitions.)
There may be no alternative for Orthodox Jews other than to use every available medical technology to sustain life.
The Westchester Institute for Ethics & the Human Person states its mission is “anchored in the classic perennial and Catholic view of the human person.” Its 2010 “White Paper” explained the position taken by the November, 2009, U S Congress of Bishops in composing the Fifth Edition of the Ethical and Religious Directives: Unless the patient is imminently dying, not able to absorb the food, or no tube feeding is available in a remote area, then the only rare instance that Artificial Nutrition and Hydration (ANH) would not be obligatory is if ANH itself causes the patient “excessive burden” such as significant physical discomfort -- as determined (contemporaneously) by others such as proxies, loved ones, attending physicians and a priest or ethicist trained in the Church's moral teaching on these matters. The White Paper thus concluded: “It would be immoral for [Catholics] to indicate in their living wills or advance medical directives an across-the-board desire to forgo or have withdrawn -- without any further consideration -- the provision of food and water if they should suffer some severe cognitive impairment.”
In contrast, the April, 2011, essay by Kevin McGovern, presents the progressive Catholic view. As both priest and Catholic ethicist in East Melbourne, Australia, Kevin McGovern often answers people’s questions about appropriate end–of–life treatments. What makes his perspective on tube feeding for dementia particularly interesting is this contrasting personal experience: after his own father could no longer swallow due to throat cancer, tube feeding made it possible to extend the life of his father for several enjoyable years. Reverend McGovern cites several non-US sources to conclude: “Catholic teaching does not simply demand the insertion of a feeding tube into Catholics with dementia who have lost the capacity to feed themselves.” He advises: “If you accept this opinion about hand/spoon feeding” (since its “burdens include coughing and spluttering as food goes down the wrong way; its risks include aspiration pneumonia” and that it “can involve placing soft food at the back of the patient’s tongue so that they swallow simply by reflex. If this is not forced–feeding, it is very close to it”), then “the Natural Dying Living Will Cards... identify the sorts of circumstances in which hand/spoon feeding or other treatments will become extraordinary or disproportionate without conflicting with Catholic teaching.”
Note: Natural Dying Living Will Cards represent a slight but important modification of My Way Cards. (The latter name appealed to those who wished to emphasize their own, autonomous choice.) The set of Natural Dying Living Will Cards includes a brief summary of Reverend McGovern’s points below, however “sorting/deciding about” all the items/cards yields the same Natural Dying—Living Will. Its purpose is to inform future decision–makers about how one feels about specific challenging end-of-lfe circumstances for which certain kinds of treatments are judged to have potential for much suffering and be a great burden but offer almost no benefit.
by Reverend Kevin McGovern
Director, Caroline Chisholm Centre for Health Ethics
Some Catholics might feel hesitant about using the Natural Dying — Living Will Cards. For example, a conscientious Catholic might ask if the cards accord with Catholic teaching about planning future health care. This short article seeks to address these concerns:
Catholic teaching holds that each person has a moral responsibility to use those means of sustaining our lives that are effective, not overly burdensome and reasonably available. These are called ordinary or proportionate means of preserving life. On the other hand, each person also has the moral right to refuse any treatment that is futile, overly burdensome or morally unacceptable. These are called extraordinary or disproportionate means of preserving life.
When treatment is offered, how do we discern if this is an ordinary or proportionate means of preserving life, or an extraordinary or disproportionate means? When we try to put this into words, it's actually quite complex. In the Catholic tradition, one of the best explanations is found in the Congregation for the Doctrine of the Faith's 1980 Declaration on Euthanasia. In a section headed 'Due Proportion in the Use of Remedies,' it states that this discernment involves “studying the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources.” Note that there are actually a lot of factors that have to be considered.
Who should make this discernment? The Declaration adds that “in the final analysis, it pertains to the conscience of the sick person, or of the doctors, to decide...” Often, too, when the patient is no longer able to speak for themselves, it is their family or health care proxy who must decide or speak for them.
Some cases are fairly simple. One example is treatments that offer few if any benefits. If a treatment does not cure, nor slow down the progress of disease, nor relieve pain, discomfort or distress, nor help to maintain a patient's lucidity or consciousness, it is a disproportionate means which may be refused.
Other examples that are fairly easy to discern are treatments which impose significant burdens. If a treatment is physically too painful, or psychologically too distressing, or socially too isolating, or financially too expensive, or morally repugnant, or spiritually too distressing, again it is a disproportionate means which may be refused.
In real life, cases are often more complex. This is particularly so in cases which involve dementia. The Natural Dying — Living Will cards are designed to help this discernment of ordinary and extraordinary means in these difficult cases which involve dementia.
Dementia is caused by progressive degeneration in the brain. It is manifest in such signs and symptoms as memory and communication problems, changes in mood and behaviour, and a gradual loss of control of physical functions. As dementia progresses, the capacity to feed oneself is often lost. One possible treatment is Manual Assistance with Oral Feeding and Drinking — or hand feeding or spoon feeding, as it is commonly called. This is often tried, at least for some time. Another possible treatment is Clinically Assisted Nutrition and Hydration (CANH) — whose usual form is commonly called tube feeding. Nowadays, this is rarely provided for patients with dementia.1
Both hand feeding and tube feeding impose some burdens. To discern whether these treatments would be ordinary or extraordinary means for a particular patient, these burdens must be compared with the benefits that are provided. At the same time, as the Congregation for the Doctrine of the Faith noted in 1980, we must also consider “the state of the sick person and his or her physical and moral [or psychological] resources.”
All this is what the Natural Dying — Living Will cards allow us to do. The cards detail various circumstances which may occur as the dementia progresses. Many of these circumstances bring with them some extra burdens. At the same time, they render the patient more frail, and diminish their physical and moral resources. They also reduce the patient's capacity to strive for the spiritual purpose of life by knowing, loving and serving God, self and neighbour, and even their capacity just to enjoy life. These diminishments arguably reduce the benefits of ongoing, life-preserving treatment.
Are there some circumstances in which benefits and burdens are such that ongoing treatment becomes extraordinary or disproportionate? Or are there some circumstances in which the burdens of ongoing treatment are just too much for an already very frail patient? The Natural Dying — Living Will cards enable patients or their health care proxies to discern if some treatments in some circumstances have become an extraordinary or disproportionate means of preserving life.
It should be stressed that this discernment does not involve any judgment that this patient's life is not worth living. It is a discernment not about the patient's life, but about their treatment. It is precisely a discernment that in the patient's changing circumstances, this treatment which was once ordinary and proportionate has now become disproportionate and extraordinary.
In 2004, Pope John Paul II gave an important speech about tube-feeding and patients in what is variously called either a vegetative state or post-coma unresponsiveness. In 2007, the Congregation for the Doctrine of the Faith answered some questions about this teaching, and offered more explanation about what the pope had said. To reflect this teaching more accurately, in 2009 the U S bishops revised Directive 58 in their Ethical and Religious Directives for Catholic Health Care Services.
Does this teaching require that an elderly Catholic with dementia should have a feeding tube inserted? Because this question has made many Catholics anxious and worried, it is important that we consider it here:
Someone in a vegetative state has suffered profound brain damage. This damage may have been caused by a brain injury, or by a period in which the brain was deprived of oxygen. Someone in a vegetative state has normal cycles of sleep and wakefulness. However, they do not seem to respond in any way to the world around them. Thus, they do not recognise nor even look at people, nor talk, nor respond in any purposeful way to the world. Terry Schiavo was arguably in a vegetative state.
Pope John Paul II said that for a person in a vegetative state tube-feeding “always represents a natural means of preserving life” and its use “should be considered, in principle, ordinary and proportionate, and as such morally obligatory.” The U S bishops added that “medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they could be excessively burdensome for the patient or would cause significant physical discomfort, for example resulting from complications in the use of the means employed.”
Thus, Catholic teaching does not require that everyone in a vegetative state must be tube-fed. It certainly does impose an obligation to tube feed many people in a vegetative state. However, there is no such obligation if tube feeding will not preserve life, or if its administration would be excessively burdensome. Thus, for example, in 2005 an Australian Catholic named Maria Korp was in a vegetative state after being locked in the trunk of her car for four days. However, she also had significant wounds that would not heal, and despite the best medical care her condition continued to deteriorate. Ultimately, she was not absorbing food from tube feeding, and the presence of the tube had become unduly burdensome for her. In this case, two Catholic ethicists agreed that “within the principles or policy of the Catholic Church, this was a situation in which it was appropriate to stop feeding.” Ms Korp died ten days after the feeding tube was removed.
The same principle and the same exceptions apply to tube feeding for Catholics with dementia. Here, however, the medical facts are different. Dementia is a terminal condition: its progressive deterioration leads inevitably to death. By the time a person has lost the capacity to feed themselves, experience has taught us that as a general rule even tube feeding does not slow this inevitable deterioration towards death. Careful studies have shown that at this stage of dementia, tube feeding does not generally prolong life, nor improve nutritional status and weight, nor reduce life-threatening complications such as aspiration pneumonia. At the same time, inserting a tube into someone's stomach does impose significant burdens, especially if a person with dementia must be restrained so they do not try to pull this tube out of their stomach.
There may be exceptions when tube feeding might offer some benefit to a person with dementia without imposing significant burdens. However, as a general rule, tube feeding should not be attempted when a person with dementia loses their capacity to feed themselves.
In 2010, one of the departments of the Catholic Bishops' Conference of England and Wales, the Department for Christian Responsibility and Citizenship, produced a booklet titled A Practical Guide to the Spiritual Care of the Dying Person. On page 27, they noted that the Catholic obligation to provide tube feeding may cease “in the last days of life when nutrition will have little or no effect in sustaining life or earlier in some conditions, such as dementia, where steady weight loss despite CANH is recognised as part of the late stages of the illness.” This statement confirms that Catholic teaching does not simply demand the insertion of a feeding tube into Catholics with dementia who have lost the capacity to feed themselves.
In the six cards which begin with the number 8, the Natural Dying — Living Will cards invite us to make decisions about feeding. The strong consensus amongst Catholic bioethicists is that hand or spoon feeding is almost always an ordinary means of preserving life. I believe therefore that we should include Cards 8.1 and 8.2 in our “Treat and Feed” list. Thus, in 8.2, hand feeding should continue even if it's not getting quite enough food into us. When we are bedbound in advanced dementia, our nutritional needs are quite small.
Including these cards in our “Treat and Feed” list helps us to prepare what is sometimes called a ‘Will to Live’ declaration. It helps to ensure that treatment which we would want is not taken away by others.
Card 8.3 describes a form of spoon feeding in which the food is put at the very back of a person's tongue so that a natural reflex causes them to swallow. This approach often means that food goes down the wrong way. The burdens of this approach include coughing and spluttering as food goes down the wrong way; the risks include aspiration pneumonia. This seems to me to be extraordinary treatment — which we may refuse.
Card 8.5 refers to tube feeding. As I have noted above, this too is extraordinary treatment — which we may refuse.
The Natural Dying — Living Will cards therefore allow us to identify what we regard as the ordinary means of preserving life. They also allow us to identify the sorts of circumstances in which some treatments might become extraordinary or disproportionate, and therefore may be refused, withheld or withdrawn.