DENYING FOOD AND WATER, THE REAL-WORLD IMPLICATIONS

Family members and medical caretakers of the severely handicapped, the comatose, those suffering dementia, or in the so-called persistent vegetative state, often enter a new stage of grief when it appears that the condition is going to be endless. Death is now the only end. The blank dark hopelessness between now and then can easily appear as pointless suffering. Even those gifted with a religious faith which values patient and obedient suffering may understandably wonder what point God might have. The afflicted person is not capable of being patient or obedient. It is only the caregiver who is patient and obedient. And a caretaker may well wonder whether this obedience  is to God or to medical life support technologies which God had nothing to do with.

Technology, after all, is man’s creation, not God’s, and is, or ought to be, created to do good, not to drag out an already grinding dying process. And if, with all good intentions, we applied a “life-support” technology which circumstances have changed into a “death-prolonging” horror, it is still our creation and we, not God, remain responsible for its consequences, consequences which are the result of our decision to apply the technology in the first place Surely the original decision is revocable if circumstances have changed radically. It is not surprising, then, if even very  “orthodox” theologians, who must witness a loved one in one of these sad states, may come to suspect and  fear that some over-intellectualized interpretation of traditional moral teaching has led us astray from what a compassionate God wills for the dying.

My intention in this paper is to take this fear seriously and respectfully and yet be on guard against finding an escape from the burden of such distressing “end-of-life” conditions which honest and open minded secular observers will see quite rationally as evasions of the obvious.

At the same time, those who wish to defend orthodox teaching on end-of-life issues have an equally serious obligation not to obscure the  evident compassion implicit in the traditional (since at least 1957 and reaffirmed in 1981) distinction in Catholic teaching concerning ordinary and extraordinary means, especially in the case of persons who are truly dying. There is no medical-moral obligation to prolong the  dying process or to make it more burdensome with medical interventions offering little benefit. And there is nothing immoral about pain-relief, including medically induced coma, where needed. What is prohibited is killing: an action or omission with the express or implicit purpose of ending a life.

Secular Acceptance of Killing

American judicial practice has no  such absolute or blanket prohibition on deliberate ending of life when convincing documentation  exists of  the patient’s will to have medical interventions withdrawn, as became clear in the case of Terri Schiavo. The elevation of patient autonomy to the principal value is commonly held to include calling for the removal of life support technologies, not just to escape their burden and accept death, but to cause death, regardless of the burden of the technology. Certain thinkers—let me call them secularists—who have no scruples against causing the death of a severely handicapped patient certainly know the difference between letting a person die of an underlying condition and causing the person to die. They know the distinction. They just do not think it is important if they feel sure about the patient’s intention.

Since no one will deny that it is possible to kill a dying person, say by strangling a person in end-stage renal failure, or by gunshot to the head of one dying of terminal cancer, let us define to kill the dying as “to introduce intentionally a new cause of death” and distinguish this from letting die defined as “choosing not to resist by any means the active process of dying from an underlying cause which we are morally certain will cause death.”[1]

Catholic and other orthodox Christian ethicists arguing in the hearing of secularists must not seem to be unsure of these definitions and their clear distinction. Such uncertainty will make them appear insincere, or worse, bent on obtaining freedom for the caretakers or the patient from the burden of the dying process by obscuring the fact  that some action or omission is really a killing. And if it is a killing and clearly seen as such, then the secularists will publicly question why the withdrawal of assisted nutrition and hydration (ANH) should be chosen as a way to end the life of persons in the sad conditions enumerated above. Since some of these persons are not dying but rather are severely handicapped, the range of  persons now made vulnerable to killing has been expanded dramatically. The recognition that withdrawing ANH can be a particularly gruesome and painful way to die, in spite of all intentions to the contrary,  will almost certainly lead to it being outlawed in favor of direct euthanasia.

Slippery Slope to Active Euthanasia

In an absolutely heart-rending tale that appeared in the 1975 New England Journal of Medicine, James Rachels made a convincing case that almost any form of painless direct killing of a newborn would have been immensely more merciful than what happened under the extremely thin veil of “letting die.” In the article, since reprinted in many undergraduate ethics anthologies, he argues for active euthanasia because of its obviously greater compassion than a gradual starvation and dehydration of a healthy newborn with  Down Syndrome.. The case actually occurred at Johns Hopkins and was described in a New York Times Magazine article in 1972 by an attending surgeon, Dr. Anthony Shaw. Shaw speaks from the perspective of  medical staff who had to stand by at the excruciating bedside of this baby, who needed nothing more than the breaking of a thin membrane in its lower esophagus to be able to nurse normally. They had to hear its cries of hunger and then whimpers until its death. Shaw writes:

As a surgeon, whose natural inclination is to use a scalpel to fight off death, standing by and watching a salvageable baby die is the most exhausting emotional experience I know. It is easy at a conference, in a theoretical discussion, to decide that such infants should be allowed to die. It is altogether different to stand by in the nursery and watch as the dehydration and infection wither a tiny being over hours and days. This is a terrible ordeal for me and the hospital staff—much more so than for the parents who never set foot in the nursery. (Shaw, 1972)

Paul Ramsey (1978), commenting on Shaw’s observation that this “death by neglect” is similar to a second chance at an abortion, said that it should more properly be called: “Choice and promotion of  death, which is no part of a physician’s vocation.” (p. 193)

I note these things because the difference  Shaw experienced between a learned “rational” discussion of a policy and intimately seeing a policy in action is often a matter of knowing its real world character, that of  moral horror and of incalculable heartlessness. And  also we see how commentators, Ramsey and Rachels, with opposed opinions on what should be done , will strip off the verbiage and call it what it is: a killing, the one calls for a more compassionate way of killing and the other points out that killing is not [yet?] part of medicine.

I doubt that theologians who have dissented from John Paul II’s allocution “Life Sustaining Treatment and the Vegetative State” (2004) intend to expand medical practice to include direct killing, but that is the inevitable slippery slope outcome of their position. Their careful explanations will count for nothing  with secularists and, if they retain their compassion, they will call for inducing coma in targets of ANH withdrawal.

Withdrawal of Respiratory Assistance

Supporters of the withdrawal of ANH, especially those who happen to be Catholics and conservative Christians generally, know that their opinion needs defense. One that seems promising is the similarity of withdrawing respiratory assistance (RA) to withdrawing ANH. Occasionally the two withdrawals are identical in intent and in moral failure, when the intention is to end the life of  a patient for whom both RA and ANH have real potential to support patient recovery.

At  a discussion I was facilitating, a nurse described the follow real case:  She was present but not in charge when a woman in her early sixties was being prepared for her first jaunt to the recreation room. She had earlier become so ill she needed RA. She had signed over her health care decision making to her daughter but was beginning to recover. She was fitted with a mobile respirator. She had learned to slip a little liquid past her trach tube, but could not speak because of  the tube. She was sitting up sipping a little Coke when her daughter arrived. She appeared stunned at her mother’s evident improvement. She ordered the RA removed. The nurse told us she was not in charge and had to stand by while the extubated woman went into a faint and died.

“What should I have done?” asked the nurse. Dead silence filled the discussion room and I was speechless. My credentials did not include legal training, so I had no ready answer. Except for the flat, matter-of-fact tone of the nurse’s voice, I found the story scarcely credible. She had, I believe now, witnessed a deliberate killing. The key sign? The woman was evidently recovering and the RA was doing its job in supporting the recovery. Respiratory assistance was rejected because it was working. Evidently recovery was not part of the daughter’s plan. Whoever was in charge was either complicit or unaware of the legal right and duty to not carry out without consultation  what was prima facie not in the best interest of the patient.

Ordinarily RA is discontinued  because it is not assisting in a recovery and is simply prolonging a clearly downward path toward death while imposing costs of its own in making that dying more burdensome. The evidence is that, after RA  is withdrawn,  if the patient breathes independently,  efforts are not made to asphyxiate the patient. If the lack of the respirator seems to panic the patient, steps can be taken to allay the panic. It is true that the predictable result is that the patient dies a little earlier, but it was the disease or trauma which made the RA necessary and that same disease or trauma is judged to be independently  certain to cause death shortly. It should be clear that choosing the time of death is neither killing or suicide and choosing an earlier time may even be morally obligatory, if, for example, the RA equipment were bankrupting the family  or was  needed for another  patient with real  recovery potential. It is because of its failure to do any good that RA is withdrawn, not because of its success.

ANH,  on the other hand, in the PEG[2] or nasal tube form, is minimally intrusive and usually very effective at maintaining nutritional health. When it is not, like RA, it can be withdrawn. In many cases of withdrawal of ANH, some of which were fought in open court, the patient was not even any longer on a downward path toward death due to the earlier trauma or disease. Evidence of this is that these patients are not being treated for any lethal condition. It is the removal of the ANH which introduces a new cause of death.

Evidence of Lethal Intention

That the direct intention is the death of the patient is seen in several ways. Removal of  ANH has no other intended end point than death, even if , by happenstance, some other complication ends the life before the lack of food or water does.. Other justifications of rejection of a medical device such as distress to the patient or cost to the family are minimally present.  A list the morally relevant aspects of ANH via a PEG is helpful:

  • Patient comfort is enhanced by ANH
  • The PEG procedure (and even a nasal tube) is straight forward and not expensive. It can often be done with local anesthesia and in an out-patient facility.
  • Home health-care can suffice to maintain it.[3]
  • Cost to the family, financial and emotional, for the care of the ANH supported patient is almost entirely due to the continued life of the patient with the work his/her life entails. It is insignificantly due to ANH.
  • In the objection that ANH is burdensome to the patient and is seen so by the patient, it will often be admitted that most of  the burden is in its ability to keep the patient alive, not in any negative  property of the ANH itself.
  • ANH is rejected because it is successful, not because it is failing.
  • The inevitable death is due entirely to the withdrawal of ANH, a death cause  which is entirely new and through which alone the patient changes from living to danger of dying and finally to dying, by processes entirely unrelated to the underlying causes of the incapacity to take food by mouth
  • To thus introduce a new cause of death is the very definition of killing.

In sum, it is   extremely difficult to deny that death is the purpose of the withdrawal of ANH and that death  is the source of all the “benefits” traceable to the decision to withdraw ANH.  To maintain that is not a decision to kill will not stand up to scrutiny. The claim itself will be scandalous  and seen as a hypocritical rationalization.

Distinguishing Kinds of Withdrawal

Before examining the physical and moral dangers of withdrawing ANH we need to among the withdrawals which are the target of our critical analysis. We must first divide the withdrawals into those done to moribund patients and those  done to non-moribund patients.[4] Then we further divide these by whether the ANH is successful  or deficient as to achieving its end (failing to actually nourish/hydrate). And divide again by whether or not the means to carry out ANH, i.e., its operation, personnel, resources, family finances, are morally objectionable. For example: they are seized from those in greater need and with greater likelihood of benefit.

Removal of ANH in truly dying (moribund) patients

  1. Effects of disease or trauma are moving so fast to death that lack of fluid/food will not constitute a new cause of dying.  Removal is morally acceptable unless ANH is  needed for comfort.
  2. Effects of disease or trauma are moving slowly though certainly to death. Here is one type of case where the papal allocution of 2004 operates to require the use of ANH provided it is not deficient physically or morally in means or ends. In common terms: It is doing natural good and no injustice is involved in its use. The problem with withdrawal of ANH in such a case (the slowly dying) is the meaning of an honest answer to the question: “Why are you withdrawing ANH?” The honest answer is not only “because it is delaying the time of death”  but also “because the patient is still healthy enough to benefit from supplying the natural fluid and nutritional needs of the body.” The withdrawal in such a case for such a reason is an intentional attack on the remaining health of the patient, and if the underlying cause of dying does not move fast enough, the ensuing death will be due to the new cause introduced: dehydration. It is not removing a futile measure, but is the introduction of an “effective measure,” effective at ending life by its own dynamic. It is a killing and will be exposed as such by those who have no scruples about killing. And it will be further shown to be astonishingly  cruel  way to kill in a predictable, if small, number of cases.

Removal of ANH in Non-Moribund Patients

            Withdrawals of ANH which were the most hotly disputed cases and received the most public attention involved non-moribund patients who were, however, profoundly handicapped.  It is a notable and perhaps symptomatic aspect of the controversy over ANH that many of the supporters of  increased usage of withdrawal fail to distinguish between being ill  and being handicapped  due  to the ravages of a no longer active disease or trauma. Those who are handicapped in this way, but still able to defend themselves, never fall victim to the confusion. They are acutely aware of  the difference. Sicknesses are dynamic and usually progress to a natural recovery based on the nature of the cause, as in chicken pox, or to death, as in  the bubonic plague, or somewhere in between, as in diabetes. Usually doctors have treatments for sicknesses, unless there is a consensus of incurability.

If one is not being treated for any illness and is not declared to have an incurable disease, one cannot be said to be “sick”. If one is missing a leg, that is called incurable in a different sense. But life-threatening circulatory side effects from the amputation, or from confinement to a wheel-chair, are sicknesses and are treatable, like bed-sores in more profoundly handicapped persons.

The handicapped seek treatment for their illnesses and accommodation for their handicaps—and know the difference. It is an abuse of language to label as sick someone unable to talk due to now stable brain trauma, unless something else dynamic  begins. If we introduce that “something else” for the purpose of producing a dynamic of decline to death we  are killing that person. No non-dying handicapped person would doubt that withdrawal of ANH is a killing. Were these patients not so handicapped as to be unable to protest, they would ask for at least as much compassion in the choice of lethal measures as would a criminal sentenced to death. For the non-moribund, withdrawal of morally and physically good ANH   is always a killing and therefore morally illicit. The patient-target of this withdrawal would surely prefer a lethal fast-acting injection.

The Scandal of Risking Cruelty

Above I mentioned the cruel killing of an infant by dehydration which was made possible because of the child’s weakness and the absence of anyone with the courage or the legal ability to stop it.  Currently death by dehydration is beginning to threaten other equally vulnerable groups: the comatose, demented, minimally conscious, and others. This threat gives strength to the secular argument calling for direct, speedy, painless active euthanasia, just as it did with the killing of the infant. And that is because dehydration death cannot be assured to be painless and will predictably lead to a small number of cases of  horrendous suffering.

Those in favor of withdrawal of ANH from  non-moribund cases will assure us that it is a painless, but prolonged, way to die based on anecdotal evidence (Franklin and Meier, 1998). Equally anecdotal, but based on direct testimony, are accounts by patients who have emerged from coma and states of semi-consciousness. They reveal that a few of them experienced severe pain while in their “locked in” condition. Even  if this were as rare as 0.05% of the cases of “locked in”, to subject them to death by  prolonged dehydration would be grossly and cruelly negligent when a more assuredly painless and quick way of  ending lives is readily available and immensely more conservative of medical resources.[5]

Why would a caring medical person, or any person, choose withdrawal of  ANH with the attendant risk of afflicting such suffering rather than a speedy compassionate lethal injection? Limited to those two alternatives, the patient would certainly choose the latter.

In 2007, the California State legislature was entertaining a physician assisted suicide (PAS) bill modeled on legislation in Oregon that limited it to patients who could drink a lethal  potion unassisted and who had six months or less to live. Staffers in the legislative offices spearheading the effort were willing to acknowledge that an internal logic of inconsistency would lead, after its passage, to  transformation into a policy of direct active medical killing.

For example, if the goal of relieving unbearable physical or mental suffering in the terminally ill justifies PAS, what sense does it make to confine the practice to those well enough to imbibe a poison on their own or to those who are expected to die in six months? Clearly those who have a longer time to suffer need relief more, not less. The tacit and sometimes explicit reassurance was that those inconsistencies would be removed by gradual amendment over time.

Is this the true goal of supporters of withdrawing of ANH? It is hard to imagine that traditional Christian and Catholic moral theologians engage in such policy duplicity. Could it be that the image of a physician dispatching patients actively is too lurid? Is their support of withdrawing  ANH something like tolerating the ghastly ripping and tearing of a near birth infant, as long as it is hidden within the womb, as compared to delivering the child and dispatching it mercifully?.  The cases are somewhat different.

The abortion case is  an adult claim of  autonomy run amuck, where maternal instinct and obligation to care for her offspring, and medicine’s vocation to help her, are corrupted into their opposites. And the supporting rationalization  requires making the offspring a non-entity. In the case of withdrawal of ANH, moral theologians have more than once recounted how their search for ways to make final  suffering and dying more bearable in duration and intensity began at the bedside of a loved one whose sufferings were felt as one’s own. Outgoing compassion rather than in turned autonomy is the dynamic here. How could that be wrong?

To attempt to show this by rational argument is to suggest we know by reason why God has taken out of human authority to deliberately end the life of an innocent. We can offer many wise arguments about why humans would not handle such authority safely. But ultimately it is a gift of our faith to believers, and until recently, to our cultures to treat the lives of the innocent as belonging to Him alone. This makes them sacred, untouchable even by those motivated by the deepest compassion.

It is easy to sympathize with those who feel that compassion cries out for carefully guarded exceptions here, especially if there is some way to see shortening the time of distress as not really killing. There is nothing shameful in the desire to alleviate suffering, to avoid it if possible. Our God-given love of self and of our neighbor calls for it and we hear it from Christ in the Garden. But in that Garden we hear Christ’s avowal of obedience to his Father’s will. And  there  in the Gethsemane scene also we hear at least two limits on escape which come with that obedience: not to use human violence (Peter’s) and not to call on divine violence  (legions of angels to beat off the arresting crowd).

Is withdrawing ANH violence? I am afraid it is, certainly for those in the locked-in condition, and will soon introduce violence into medicine. At least some courts, notably the California Supreme Court,  are currently aware of the explicit violence threatened in decisions to extubate patients. In the Wendland Decision, the California Supreme Court pointed out that all the delicate regard for autonomy and privacy, expressed by those seeking extubation, were just scant cover for an incautious decision to kill which is “the gravest possible affront” to a conservatee’s privacy and the autonomy it shields. Although the court was more permissive where patients were presumed to be incapable of suffering from withdrawal of ANH, it was clearly stunned that normally compassionate parties were willing to let a conscious patient suffer dehydration (2001, p.11 & 15). No more than a moderately attentive reading of the Court’s unanimous opinion  reveals that  the justices were scandalized by  an Amicus Curiae brief in which some Catholic institutions joined in the call for Wendland’s extubation. Rita Marker’s discussion of the case in NCBQ (Spring 2002,  125-136) includes details of the oral arguments which deepen the awareness that  some Catholic theologians need to be much more cautious and aware of the vulnerability of the severely handicapped.

Christian moral theologians surely do not wish to side with torturers, but  those opposing the utilization of ANH in the cases outlined above may end up doing so unintentionally. In questioning why some cases of killing should not be called acts of  compassion rather than killing, they might reframe the question to ask: “If a God we know to be infinitely compassionate forbids this kind of compassion (deliberate ending of life by dehydration), is it because He knows how much unintended suffering it will cause?”  If we can believe the reports surfacing from convalescent homes and other care facilities, this is already happening in Britain.

Reported by Matthew Cullinan in Life Site News (5/17/2018) we read:

       How could Britain’s prime minister get away with denying that a health care system that allows hundreds of people to be dehydrated or starved to death every year is in a “humanitarian crisis”? Perhaps it’s because the British public has become desensitized to the problem. As incredible as it may seem, starvation and dehydration deaths in the hundreds each year have been reported on a regular basis since at least the year 2000, when 862 patients were killed principally or in part by starvation or dehydration in NHS hospitals and care centers. By 2010, the horrific figure had climbed even higher, to 1,316 patients annually.

When the dangers and actual tragedies of extubation policies become evident we can expect to find indignant secularists calling for direct, quick, cheap, and active euthanasia, and attacking  the arguments of our moralists as cruel hypocrisy.

And so, finally, the greatest violence will be done to patients and to the profession of medicine as it adds lethal injections to its instrument cabinets and essentially unregulatable euthanasia to its practice.[7]

 

 

BIBLIOGRAPHY

California Supreme Court Decision , 2001 “Conservatorship of Wendland” ( Cal 4th) (S087265, Aug. 9,) Opinion by Justice Werdegar, expressing the unanimous view of the court.

John Paul II, 2004, “Life-sustaining treatments and vegetative state: Scientific advances and ethical dilemmas.”  Accessed at: www.lifeissues.net/writers/doc/doc_33vegetativestate.html

Marker, Rita. 2002. Mental Disability and Death by Dehydration, The National Catholic Bioethics Quarterly, Spring .
Miller, Franklin and Meier, Diane, 1998. Voluntary Death: A Comparison of Terminal Dehydration and Physician-Assisted Suicide, Annals of Internal Medicine, vol. 128, 7, 559-562.

Rachels, James. 1975  Active and Passive Euthanasia, New England Journal of Medicine (1/9/75, pp. 78~80)

Ramsey, Paul, 1978, Ethics at the Edges of Life, New Haven: Yale University Press

Shaw, Anthony. 1972,. Doctor, Do we have a Choice? New York Times Magazine. 1/30.54 ss,

Tollefsen, Christopher, 2008, Artificial Nutrition and Hydration, The New Catholic Debate, Dordrecht:  Springer.

[1] It is understood here that the means by which we might resist/slow the approaching death have no actual therapeutic potential in this case.

[2] PEG means Percutaneous, Endoscopic Gastrostomy in which, aided by a tiny camera in the stomach, a tube is inserted  in the stomach  through  the abdominal wall and secured from the inside.

[3]  I am indebted to Christopher Tollefsen (2008) (Artificial Nutrition and Hydration, The New Catholic Debate, Springer, Dordrecht, 2008) for this section of my comments.

[4]  By moribund we mean “actively dying from some disease or trauma process.” The dying process need not necessarily be the cause of the inability to take food by mouth.

 

[5] Your author was paralyzed and on a  ventilator  and ANH for 90 days. I can testify  that even with adequate hydration a single night with a dry mouth is an excruciating experience.

[6] California Supreme Court Decision , “Conservatorship of Wendland” (2001, Cal 4th) (S087265, Aug. 9, 2001) Opinion by Justice Werdegar, expressing the unanimous view of the court, (hereafter referred to as “Wendland Decision”). The conservators are seen by the court as seeking “deliberately to end the life of conscious conservatee”  with disastrous impacts on his privacy  and autonomy (p.17,19,21.)

[7] In the context of the Dutch secularization I find nothing surprising nor indicative of moral collapse or corruption in the fact that close to half of Dutch medical euthanasias go unreported in spite of (and perhaps because of) very detailed regulatory schemes.  See the 1991 Remmelink Report.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.