Twenty Propositions

Nicholas Tonti-Filippini

John Fleming

Mary Walsh

Introduction

The patient who is persistently unresponsive (sometimes referred to as “vegetative” or “comatose”) poses particular ethical difficulties in relation to whether to continue feeding, particularly when the evidence indicates that the state is permanent.

In Melbourne, this matter came to a head with a recent Victorian Supreme Court review of a decision by the Public Advocate and a tribunal to allow a patient’s husband to withdraw feeding through a Percutaneous Endoscopic Gastrostomy (PEG Feeding). The patient, known as BWV, had advanced Pick’s disease, a degenerative brain disorder disease that is characterised by the circumscription of the atrophy to the upper brain. She had been fed via a PEG for more than three years.

Because she is unable to swallow any food or fluid given by mouth, she is doubly incontinent, that is of bladder and bowels, and spontaneous emptying of these organs occurs through the action of spinal reflexes. As a result the patient now requires to be moved by a hoist to the shower and after cleaning there is an application of pads, to protect her skin as far as possible.

She requires regular avoidance of pressure, having previously developed some pressure ulcers which were healed as a result of the excellent care she had received in the hospital; they remain a threat of recurrence as a result of her continuing deterioration. She has no cognitive capacity at all and appears to be unable to appreciate any painful stimuli[1]. She is incapable of any movement but will follow with her eyes anyone who comes to her bedside.2

There are many cases concerning patients in similar states in courts and before ethics committees throughout the world. There is some significance, however, in the fact that Pick’s disease follows a predictable course of atrophy to the upper brain and it is incurable. Faced with that prospect early on in the disease process, patients may well be able to issue an informed and competent direction about their care, in advance, based on an accurate prediction of the eventual nature and progress of the disease. There are efforts being made in Western societies to ensure that patients with predictable degenerative diseases do issue declarations of that kind.

This case raised questions to do with the previously expressed wishes of the patient, the rights and obligations of her representative, and whether it was morally and legally acceptable for him to withdraw sustenance and allow her to die of dehydration and malnutrition. The question of the previously expressed wishes of the patient3 has particular moment when, as in this case, the condition is a chronic degenerative brain disease following a predictable course. Crucial to the issue are the differing notions of what is meant by “dignity” and whether when applied to a patient’s degenerated condition perceived indignity of the condition itself (not the treatment) is relevant to decisions not to sustain life by non-burdensome means.

The public discussion drew different responses from within the Catholic tradition. The Archdiocese of Melbourne, having applied successfully to the Court to be heard as a friend of the Court, argued against withholding sustenance. The diocese argued that the treatment was not itself overly burdensome or disproportionate and that to authorise withdrawal would be to “condone hastening death by calculated omission.”4 However, some well-known Catholic doctors argued in favour of the decision to withdraw. For instance, John J. Billings, MD wrote:

The valid conclusion to be made is clearly that which the woman had made many years ago[5] and with which all the members of the family now agree, that it would be a mercy to release her from her undignified and grave incapacity by discontinuing the tube feeding and allowing her to die.6

This paper is a multidisciplinary attempt to clarify that discussion in the hope that by doing so we can foster agreement within the Catholic tradition. The difference of opinion between respected Catholic authorities caused great distress and caused confusion about the Church’s advocacy for human life and human dignity. Many saw Dr. Billings’ intervention to be indistinguishable from advocating euthanasia for those whose condition was judged to be “undignified and [of] grave incapacity.” Others saw the Church’s intervention as an officious interference in a matter that should be left to families and physicians.7

The questions are:

1. Is it morally acceptable for a person to instruct that he or she is not to receive artificial nutrition and hydration if in the future he or she is in a persistently unresponsive state from which there is little likelihood of recovery?

2. If a patient is now incompetent, how far should that previously expressed wish of the patient not to continue with nutrition and hydration influence the decision of the doctor or a court?

3. May or should a medical practitioner continue with the treatment in that case if the treatment itself is considered by the doctor to be not overly burdensome to the patient, the family or the community?

4. If a person has been legally appointed to represent the patient in medical matters, by the patient or by the public authority, does he or she have the moral right to refuse the initiation or continuation of artificial nutrition and hydration, which is not itself overly burdensome or disproportionate, on the grounds that the life itself is so disabled that it should not be prolonged or because the family is suffering and the patient would have refused?

In English-speaking countries the answers to these questions are greatly influenced by the emphasis placed on the principle of autonomy, which is considered to override medical decisions to sustain life on two grounds:

i) The view that a person who is no longer rationally autonomous has reached the stage of being a “narrative wreck” and continued survival is an affront to human dignity;

ii) Persons with progressive disease have the legal right to ensure in advance that should they permanently lose rational autonomy in the future they will not be provided with artificial nutrition and hydration to sustain life.

This article, which is adapted from a paper we presented at an International Congress in Rome in March, addresses these questions in the light of the Catholic Tradition, including the teaching of Pope Pius XII on this matter, the present Pope’s encyclical Evangelium Vitae, and the practical difficulties encountered by Catholic doctors in secularist societies. We have revised the original paper here to include discussion of John Paul II’s statement, “Life Sustaining Treatment and the Vegetative State” (see Appendix ??), which he gave to the Congress participants.

We argue that in the making of a declaration in advance, a crucial moral issue is whether the intention is that the patient not live with a certain condition. If that is the intention, then it is not a refusal that can rightly be made. The object of the refusal would be to bring about death. This is absolutely clear in Evangelium Vitae and in the Declaration on Euthanasia.

If by saying that it would be “a mercy to release her from her undignified and grave incapacity” it is meant that the intention is to bring about death by the refusal of treatment, then this is not consistent with what has been firmly taught by the Pope and by the Congregation. The question of a permissible omission does not arise if the object of the refusal is to bring about death. That is what is expressly condemned.

If on the other hand the declaration in advance expresses not a wish to die but a refusal of a type of treatment that is itself problematic in some way then the question turns on whether there is a duty to accept that treatment and that in part is determined by its effectiveness and the difficulties involved in delivering it. This judgement is in part subjective on the part of the patient but it is also in part objective and both elements need to be satisfied.

The question is the extent to which one is obliged to undergo that treatment. This is not a question of deliberately choosing death but a question of responsibility to maintain life and the reasonable limits of that responsibility when the means to achieve it are problematic.

The problem, as we see it, in the cases such as the patient with advanced Pick’s disease, is that there are usually no such difficulties once a PEG has been established. The feeding is not itself problematic and it is effective in sustaining life. The difficulty is over the fact that the life continues. The moral difficulty over feeding is that the withdrawal of feeding is based on the notion that the life should not continue and that leads to the decision that the feeding should stop. The object then of that decision is to bring about death.

Some have adopted the view that this is permissible because of the medical condition of the patient, perceived indignity of the condition and the suffering of families as the life continues to be prolonged. This is a view being adopted by some Catholic doctors and some of their theological advisers. Is it an overly secularised view? Does it challenge the Tradition in relation to respect for human dignity and the worth of every life no matter how disabled?

We argue that no one has a life that is not dignified in the relevant sense of being made as a psychosomatic unity in the image and likeness of God. We conclude that one has a duty to maintain life by means that are not in themselves disproportionately burdensome, and one may not give a direction in advance to the contrary regarding oneself.

We argue that there is a place for patients issuing declarations in advance but the moral limits need to be clarified

We address the moral issues involved for health professionals in the trend toward the use of directives issued in advance of the progress of a degenerative condition.

Twenty Propositions

1. Whatever the level of disability, while ever he or she is bodily still alive, the human being remains an inherently intellectual spiritual being by virtue of being a body formed by an intellectual spiritual soul.

Speaking in relation to the “vegetative state,” Pope John Paul II has affirmed that “the intrinsic value and the personal dignity of every human being do not change, no matter what the specific circumstances of their life. Human beings, even if they are seriously ill and impaired in the exercise of their highest functions, are and always will be human beings and will never become ‘vegetables’ or ‘animals.’ Our sisters and brothers who are in a ‘vegetative state’ fully preserve their dignity.”8

The Council of Vienne in 1311 decreed that the parts of our human nature are united together, “namely the human, passable body and the intellectual or rational soul truly of itself and essentially informing the body.”

The human being is an inherently rational and spiritual being and does not have several souls—vegetable, animal and intellectual or spiritual.

2. The term “vegetative” should not be applied to human patients, whatever their level of disability, because the term is contrary to human dignity and not a reflection of the reality that the patient has an intellectual spiritual soul.

The Pope maintained that physicians and health workers, society and the Church have a moral duty toward these persons which they cannot shirk, without neglecting the requirements of professional deontology as well as Christian and human solidarity. “Sick people in a vegetative state, waiting to recover or for a natural end, have the right to basic health care (nutrition, hydration, hygiene, warmth, etc).”10

The probability that there is little hope for recovery, “when the vegetative state lasts longer than a year, cannot ethically justify abandoning or interrupting basic care, including food and hydration, of a patient.” Death by starvation or dehydration carried out “consciously or deliberately is truly euthanasia by omission.”11

The Pope recalled the “moral principle according to which even the slightest doubt of being in the presence of a person who is alive requires full respect and prohibits any action that would anticipate his or her death. The value of the life of a man cannot be subjected to the judgement of quality expressed by other men; it is necessary to promote positive activities to counteract pressure for the suspension of food and hydration, as a means to putting an end to the life of these patients.”12

“Above all,” he added, “we must support the families” that have a patient in the vegetative state. “We cannot leave them alone with the heavy human, economic and psychological weight.” Society must promote “specific programs of assistance and rehabilitation; economic support and help at home for the family; and support structures when there are no family members able to address the problem.” In addition, he said, volunteers provide “fundamental support to help the family to escape isolation and to help them to feel a valuable part of society and not abandoned by social institutions.”

John Paul II ended by emphasizing that “in these situations spiritual and pastoral help is especially important in order to understand the deeper meaning of a seemingly desperate situation.”

The Pope held that water and food, even when administered artificially, are “a natural means of preserving life, not a medical procedure. Therefore, their use must be considered ordinary and appropriate and as such, morally obligatory.”

A feature of the Rome congress was the witness given by so many doctors and nurses engaged in the care of those who through illness or injury are no longer responsive. European doctors expressed surprise that, in Australia, doctors and nurses consider it permissible to withdraw basic care such as nutrition and hydration. We were told that in France, where it is not permissible to allow religion to influence medical practice, it is a criminal offence to withdraw food and water from a person who is in an unresponsive state, even if they have previously requested the withdrawal.

It is a sad reflection on Australia that the NHMRC document refers to the lack of doctors with experience in the long-term care of people in an unresponsive state. Yet on the corresponding European data, there should be at least 400 Australian patients in that condition. Missing in Australia would seem to be clinics that specialise in caring for people in an unresponsive state with activities designed to maintain them physically and to stimulate mental capacity.

3. The polarisation of contemporary discussion of patients who have persistent unresponsiveness (PVS) represents a clash between

• modern culture, which insists on existential dignity and

• the Christian tradition of upholding of essential or connatural dignity.

“Human dignity” has a philosophical and theological meaning that refers to the worth of a human being. The International Human Rights instruments say that every member of the human family has inherent human dignity (it cannot be lost, taken away, given away, sold or exchanged) from which our equal and inalienable rights are derived. This notion of dignity is not dependant on a person’s level of function or capacity: each has it simply by being a member of the human family.

But in common parlance we do refer to undignified acts (acts which are not consistent with our being rational beings) and we do refer to undignified circumstances, circumstances that are somehow demeaning to us. The philosopher Herman Speigelberg lists the following attributes of dignity as a concept:

• being both inherent and a goal to be achieved or created and not naturally endowed;

• unassailable but able to be violated;

• independent of recognition but demanded by the disinherited;

• incapable of being lost but lost by doing acts “below human dignity”;

• worthy of respect but sometimes linked with respect as in “worthy of respect and dignity.”13

Much of this, Speigelberg suggests, is explained by distinguishing between human dignity and “treating someone with dignity.”14 He suggests further that “human dignity” may be defined as “the worth of a person who is worth being for his own sake, regardless of his usefulness for another,” but then admits that it must be more complicated than that and concludes by saying,

The search for grounds of human dignity presupposes a full-fledged philosophical anthropology, showing not only man’s essential nature, its ingredients, its structure and its place in the cosmos, but also his values, rights and responsibilities.15

Human dignity has a philosophical and theological meaning within the Christian Tradition. In Gaudium et Spes, the Second Vatican Council taught that the divine image is present in every man and that every man is endowed with a spiritual and immortal soul.16 It is in this teaching that our Tradition sources human dignity. Human dignity is inherent, it cannot be lost and is not dependent on capacity. We do not lose our human dignity because we are dependent on others or because disease robs us of the ability to reason and to communicate. Dignity, in the sense of human worth, exists in having an immortal soul, not in an individual’s level of functioning. On that basis, loss of function is not itself a reason for not providing life-sustaining treatment.

In discussing the patient with advanced Pick’s disease, when Dr. Billings refers to the patient’s “undignified and grave incapacity” it is not clear what he means. This would seem to refer both to her condition (immobility, incontinence of bowel and bladder, total loss of cerebral activity and of cognitive functions) and what is done to manage her condition (“the use of a hoist for showering”). However it was not claimed that she was experiencing indignity. The indignity referred to is not the way she feels but perhaps the way that she would have felt were she to be capable of being aware of her circumstances and what was being done to her as part of her care. Perhaps what is meant is that the relatives feel that her condition is undignified.

Are a competent person’s feelings, attitude or desire about such matters, in prospect of degenerating to such a state, a legitimate reason for her to refuse life-sustaining care for the later time? In the patient’s declaration the issue of willing her own death for that later time cannot be avoided. If her declaration is, do not feed me then because it would keep me alive and I would not want to live in those circumstances, then this is indistinguishable from a suicidal wish (albeit one for which we might have considerable sympathy). The intention is to bring about death by omitting that which would otherwise have been provided. Given the reason, not wanting to live with a condition that is undignified and lacking capacity, the request is intended to bring about death. The object of the request is to bring about the end of life (of a certain kind). This is to be distinguished from a request that others not undertake a measure that is disproportionate or overly burdensome where the disproportionality concerns the hardship to which they may be put to deliver that measure.

One can understand the anguish that a person may have over impending loss of function in a degenerative disease and that a person might not want to burden the lives of his or her family with his or her own self as the illness increases dependency on them. But in considering an advance declaration, it would seem that we are not free to give an instruction that is based on some other notion of human dignity that relativizes dignity to capacity and functions and declare ourselves to be worthless in a given set of circumstances. We may decide that the efforts needed to sustain us impose an undue burden on others, provided that those efforts really are burdensome, and dispro-portionately so. But the kindness that may motivate us to free others of their responsibility to us is misguided if it involves demanding that we be treated as less than the possessors of the inherent human dignity given to us in our creation by God in his image and likeness.

It was said that, to her family, the patient with Pick’s disease had been rendered dehumanised and depersonalised by the disease. The wife and mother that they had always cherished no longer seemed to be there.

Loss of psychological personality often happens as a result of disease, but this is not loss of personality in the sense in which it is important to a Christian, the personality that is the result of being made in the image and likeness of God with an immortal soul. That BWV is now unable to respond, does not mean that the person has gone. The love that we are called to give is not conditional upon response, but unilateral. The love for mother or spouse is not conditional upon her response. She remains the mother that they had always cherished. While the call upon their love may be greater now because the love receives no reward, the obligation to love remains despite the grave incapacity. More than that, their supportive responses to her needs continue to be virtuous, continue to be the expression of their personalities. Her personhood remains an opportunity for them to develop in the image and likeness of God by loving her, even when she is unresponsive.

Following Christian tradition, Luke Gormally contrasts connatural dignity with existential dignity.17

Essential or connatural dignity is the dignity that is inherent to a human being because he or she has an intellectual spiritual soul made in the image and likeness of God, redeemed by Christ and called to communion with him. It is this notion of dignity that results in us upholding respect for human life from beginning as an embryo without evident ability to think, throughout all stages, whatever happens, and until the end of life, even though for some the end of life is preceded by a phase of lost intellectual ability.

Making an advanced declaration to refuse treatment is thus not without the moral limitation that one ought not ask others to behave in ways which are less than virtuous, to ask them to treat oneself as less than a person with inherent human dignity.

4. A patient’s level of disability or lack of existential dignity is not a reason for withdrawing treatment that is not overly burdensome and which would maintain the patient’s life.

The problem, as we see it, in the case of the patient who becomes permanently unresponsive (as happens in advanced Pick’s disease) is that there are usually no such difficulties once a PEG has been established at some earlier time.

The feeding is not itself problematic and it is effective in sustaining life. The “difficulty” is over the fact that the life continues. The moral difficulty over feeding is that the withdrawal of feeding is based on the notion that the life should not continue and that leads to the decision that the feeding should stop. This is the issue that has to be dealt with, not the issue of burden-someness, or unreasonableness or disproportionality of the feeding. The PEG feeding is obviously none of those things, in itself, unless some complication develops with the PEG.

Questions are raised about the dignity of what is called “merely bodily life,” and with it the issue of dualism—the idea that there can be a bodily human life without a spiritual soul. In other words, are we any longer dealing with a human life in a meaningful sense? This is a discussion worth having, because there has been a medical trend toward declaring that permanent loss of consciousness (which is more certain in the case of a degenerative disease than it is in sudden trauma) is sufficient reason to declare that there is no longer a living human being, just a body. This would involve a definition of death beyond brain death and so as to include permanent loss of conscious-ness. Many of the ICU units that we have dealt with already practice this even though the legal definition has been loss of all functions of the brain.

If we continue to hold that a diagnosis indicating permanent loss of consciousness is not sufficient reason for declaring that death has occurred, then we are obliged to use ordinary, non-burdensome means of sustaining life, even if the fact that the life continues may itself be a burden to others and may prolong their grief. We are not permitted to withdraw treatment with the object of ending the patient’s life. The latter is the unambiguous and constant teaching of the Magisterium.

This issue goes to the heart of the nature of the human person and to the doctrinal rejection of dualism. It is our view that whole brain death can be accepted within Christian teaching, because the body is no longer an integrated whole, integration being an essential characteristic of human individuality. The brain is an essential component, through the neural and endocrine systems, of the functional relatedness of the parts of the body to the whole. Without it there is no longer communication between the parts. But that integration remains at least to some extent in a patient with lower levels of brain function even if the patient has permanently lost cortical function. Moreover, medically, philosophically and theologically we are unable to determine what consciousness is and whether it can be considered to take place exclusively within the observable functioning of the cortex. We must give the anencephalic infant the benefit of the doubt in this respect just as we must give BWV-type patients the benefit of the doubt in that respect. Sustaining a patient is an important part of palliative care. The delivery of nutrition and hydration has great significance since they are a normal part of life without which no one can survive. Their delivery is a basic way in which we show we care for and love one another.

In making a declaration in advance about nutrition and hydration, it is important not to ask others to fail to fulfil that obligation. However, such a declaration might reasonably take into account that there are circumstances in which nutrition and hydration are not warranted.

• The patient’s system is shutting down and N&H would actually hasten death or the patient cannot assimilate them;

• The only available means of delivery would be disproportionately burdensome;

• Death is imminent and inevitable and N&H is futile because it would not prolong life or serve to relieve distressing symptoms.

In the case of the patient with Pick’s disease, it was clear that the nutrients delivered were able to be assimilated and that the patient’s system at that time was not shutting down. The problem was that the PEG feeding was successful in sustaining life. Neither was death imminent. That is to say, the patient was dying, but death was not imminent. The patient was not yet in the terminal phase of her terminal illness. The matter was brought to court precisely because she continued to live and would be likely to continue to live for a considerable time provided feeding was maintained.

Whether the treatment was disproportionately burdensome was difficult to assess. It was not argued that the patient was suffering pain or discomfort from the tube itself or that the site was excoriated and causing difficulty. The tube was already in place and had been for three years, so there was no issue about having to undertake surgery to create the facility. There was burden for the family and the carers. But the burden was more to do with the fact that she continued to survive with diminished capacity and high dependency and needed nursing care. The PEG feeding did not appear to be burdensome in itself, though not being close to the case we cannot be confident that it was not.

There was discussion about the artificial nature of PEG feeding and the fact that the mixture of nutrients used represented significant technology in its development. In a society where such resources were scarce that might have been an issue. But it was not suggested that the feeding itself caused hardship. That the feeding was artificial does not seem to have moral significance in itself. The substance being used was a substance that was also used for oral feeding.18 In any case, much of what we ordinarily surround ourselves with in modern society is artificial in the sense of man-made. That does not make it unnatural in a moral sense.

Some argued that PEG feeding is not “normal.” That is certainly so. It may be that an argument could be sustained that somehow the method of feeding itself is repugnant because so abnormal. Certainly, one may be sympathetic to the view that there does come a stage in the human condition when such efforts seem to be overzealous and a denial of the reality of the human condition and of our deaths. That is certainly the case when death is imminent and inevitable. But death in this case was not imminent provided that nutrition and hydration were maintained.

A declaration by a patient facing the prospect of advancing Pick’s disease that she was not to have the surgery to have a PEG fitted, might be morally justifiable, given the significant burden and intrusiveness of the surgery and the risks. But a declaration that such feeding cease at some later point on the grounds that the patient does not now want to survive at the predictable later state of degeneration and lost function and capacity, would seem to be indistinguishable from a request to have his or her death caused by omission. To make such a request would seem to be gravely immoral.

In his encyclical Evangelium Vitae, Pope John Paul affirmed with some clarification the earlier teaching of the Congregation for the Doctrine of the Faith. He writes:

Euthanasia must be distinguished from the decision to forego so-called “aggressive medical treatment,” in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family. In such situations, when death is clearly imminent and inevitable, one can in conscience “refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.” Certainly there is a moral obligation to care for oneself and to allow oneself to be cared for, but this duty must take account of concrete circumstances. It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death.19

In the Catholic debate there has been a question over whether the statement, “It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement,” applies only in the circumstance where death is clearly imminent and inevitable. This passage in the encyclical and a similar passage in the Declaration on Euthanasia (DE) seem ambiguous in this respect.

The tradition seems clear that treatment may be withdrawn if it is itself disproportionately burdensome or simply futile. Pope Pius XII referred to the legitimacy of withdrawing ventilator support on these grounds without restricting the permission to the circumstances of imminent and inevitable death.20 The earlier tradition also referred to it not being obligatory to use extraordinary means of care and this had some meaning when professional health care was outside of what could be afforded by people in ordinary circumstances. Health insurance and public schemes removed some of the meaning from that distinction. Medical care is now within the reach of most if not all people in developed economies. The Congregation (in DE) in 1980 opted instead for “the application of a medical procedure disproportionate to the results that can be expected.” But the focus is on the means, not on a judgment about the worth of the patient.

Careful thinking has also been needed in relation to the use of the word “futile.” In this case “futile” means that it would not be effective in prolonging life. Moralists have been careful to explain that this ought not be a decision based upon a judgement that the quality of life of the patient is futile or overly burdensome. The decision is to be a decision about the treatment itself, and not a decision about whether the patient should live or die. Disturbingly, the term “medical futility” has come to be used to describe not the effectiveness of treatment, but the level of disability of the patient. Thus W. Daniel Doty et al. write about “medically futile conditions” in their article in the journal Clinical Cardiology.21 This is different from referring to medically futile treatments.

7. Medical assistance to prolong life may be obligatory, especially where the medical assistance to care in fact reduces the burden of care.

This is certainly the case in relation to feeding by Percutaneous Endoscopic Gastrostomy (PEG).

PEGs are most often put in place because they are a much cheaper, much less labour intensive form of feeding than hand feeding a patient who cannot manage to feed himself or herself, particularly if the patient is slow to swallow or has difficulty swallowing.

The cost of provisioning and maintaining a PEG is less than 30% of the cost of paying an aide to hand.

Although some methods of artificial feeding may be overly burdensome (total parental nutrition is expensive because of the pathology required and a naso-gastric tube may be uncomfortable for a conscious patient), in reality in an unconscious patient or if a PEG is in place and uncomplicated, feeding is not overly burdensome.

A person with a chronic, progressive illness, or because of advanced age, may expect to lose the capacity to make and express competent decisions about medical treatment. A declaration in advance may be to request or to refuse various treatment options.

The difficulty with a declaration in advance is that it only comes into effect when the patient is no longer competent. In making such a declaration one is addressing duties and obligations of others. It would be wrong to make a declaration that requested of them a moral evil or that established a moral obligation that was too onerous.

An advanced declaration thus needs to take into account the agent who is to carry out the wish of the patient, the agent’s circumstances, the health care team and an objective assessment of the moral goodness of what is requested.

Pope John Paul II wrote in Evangelium Vitae: “When he denies or neglects his fundamental relationship to God, man thinks he is his own rule and measure, with the right to demand that society should guarantee him the ways and means of deciding what to do with his life in full and complete autonomy.”23

Our experience in Australia is that patients are encouraged to take responsibility for decisions and thus provide a legal or ethical cover for decisions by a doctor, or health institution, that would otherwise be illegal or unethical.

The crucial issue in making an advanced declaration is the matter of what it is that one is directly willing. It is legitimate not to want to impose a burden on others for one’s continued existence, but it is not legitimate to will that they should be relieved of that burden by one’s life being ended by the withdrawal of life-sustaining care which is not itself excessively or disproportionately burdensome.

An advance declaration to refuse life-sustaining care, such as artificial nutrition and hydration, is a decision to end one’s life. It is suicide. As Pope John Paul II held,24 “Water and food, even when administered artificially, are “a natural means of preserving life, not a medical procedure. Therefore, their use must be considered ordinary and appropriate and as such, morally obligatory.”

Death by starvation or dehydration carried out “consciously or deliberately is truly euthanasia by omission.”25

It would be wrong to issue a declaration to refuse care in order that one’s life should be ended as a means to preventing one’s continued life being a burden to others. The object of the declaration would be evil, even if the intended consequence is good.

The object of the act of willing is in fact a freely chosen kind of behaviour. To the extent that it is in conformity with the order of reason, it is the cause of the goodness of the will; it perfects us morally, and disposes us to recognize our ultimate end in the perfect good, primordial love. By the object of a given moral act, then, one cannot mean a process or an event of the merely physical order, to be assessed on the basis of its ability to bring about a given state of affairs in the outside world. Rather, that object is the proximate end of a deliberate decision which determines the act of willing on the part of the acting person.26

An object of an act is good when it has as its aim the true good of the person in view of his ultimate end.27 The intended consequences must also be good.28

To intervene medically, the health care professional should have the express or tacit consent of the patient.29 Pope Pius XII expressed this very clearly in 1957: “[The doctor] does not have a separate and independent right in relation to the patient. In general, he can act only if the patient explicitly or implicitly (directly or indirectly) authorizes him.”30

Without such authorization he gives himself an arbitrary power. “The patient cannot be the object of decisions which he will not make, or, if he is not able to do so, which he could not approve. The “person,” principally responsible for his own life, should be the centre of any assisting intervention: others are there to help him, not to replace him.”31

Pope John Paul II described the patient as “the responsible person, who should be called upon to share in the improvement of his health and in becoming cured. He should be given the opportunity of personally choosing, and not be made to submit to the decisions and choices of others.”32

• Is free from any form of coercion that would affect the decision; and

• Comprehends the information and is able to relate the decision to the information.

Thus the issue turns on whether the patient is informed, free and competent in relation to the decision to consent.

In North America a particular notion of “informed consent” is used in which a consenting person who lacks relevant information may be considered not to have consented at all. In some other jurisdictions, the notion of informed consent is separated into two distinct notions:

• The duty of disclosure which is an aspect of the duty of reasonable care (failure to comply may be considered to be professional negligence);

• The matter of trespass to the person if a procedure is done without consent.

Pope John Paul II asserts that the patient should be given a precise idea of his illness and the therapeutic possibilities, with the risks, the problems and the consequences that they entail so that he can make a choice with full awareness and freedom.33

These matters were analysed in great detail by Pope Pius XII. In relation to the doctor’s right and duties, Pope Pius XII taught:

The rights and duties of the doctor are correlative to those of the patient. The doctor, in fact, has no separate or independent right where the patient is concerned. In general he can take action only if the patient explicitly or implicitly, directly or indirectly gives him permission.34

The previously expressed wishes of a patient may thus be taken into account, bearing in mind the difficulties of issuing directions in advance given the unpredictability of the progress of an illness, and the inability of young persons, for instance, to imagine what life would be like at a stage of old age and infirmity. (Teenagers think incontinence would be intolerable; older people learn to live with it.)35

However, there are limitations on what the patient may direct which were addressed earlier. Obviously the patient cannot create overriding obligations for measures that cannot be delivered without difficulty for others or which compromise their moral or professional integrity. The question is whether the patient’s refusal of treatment or withdrawal of permission, however immoral, would be overriding.

An emergent issue is the extent to which doctors who uphold traditional values in relation to human life find themselves confronted by circumstances in which patients refuse treatment, even quite ordinary/non-burdensome care. Such refusals may also be accompanied by a demand for the cooperation of the doctor in managing symptoms that are the result of that neglect so that they can die comfortably.

In the care of the dying (and many other areas) a gap is emerging in the culture of death between traditional norms of medical practice and the new- found notion that the patient’s autonomous choice validates a procedure that might otherwise have been considered unethical. The patient’s informed choice within the consent process has several facets:

• Authorization or validation, or

• Demand

In the first instance, consent means what it means when a doctor offers what would be regarded by the profession as reasonable care within the ethical standards of the profession, but requires the patient’s permission before proceeding.

In the second instance, the reasonable care applies only to the competent delivery of the service. The consent of the patient gives ethical authority or validation and that is all that is needed to meet the ethical standards. There is no objective ethical standard. Often, the defence of doctors practicing reproductive technology excesses, or dubious procedures, such as sexual reassignment surgery, has been simply that the patients consented. The patient’s consent puts aside any other moral qualms.

In the third instance, the choice of the patient entitles the patient to expect the service from the professional whatever the latter’s ethical reservations. This is becoming increasingly the case in relation to post-coital intervention, for instance. In the care of the dying, it is becoming so that a doctor who refused to provide a fatal overdose may be regarded as negligent. Most legislative proposals for euthanasia have made allowance for conscientious objection, but not all. Many of those that do allow for conscientious objection qualify it by insisting that such an objection would require that the doctor refer the patient to someone who would provide the service. There is little scope for allowing a doctor to refuse to cooperate in the evil of making such a referral.

. . . . autonomy, the capacity for self-determination, is also valuable in itself in the sense that, even though what I choose (the content of my act) is objectively bad, my choosing it is still good in that it is a free and autonomous act as opposed to one that is coerced. If we contrast two acts: (a) one that is freely chosen but objectively wrong, and (b) one that is coerced and not freely chosen, but which is also objectively good, the liberal will say that the first act is more valuable then the second.37

In defence of authority (such as medical authority), Dworkin writes:

A crucial matter in this debate is the notion of professional integrity and the ideal of joining a profession in order to develop and apply one’s knowledge and skills in a way that serves the needs of another. Being a health professional means being committed to caring for those who are sick, preventing ill-health. Those are objective goals and they dignify the profession.

Most theories based on autonomy do not give validity to choice regardless of what is chosen. Many autonomy idealists appeal to various notions of rational autonomy. But the more sophisticated such theories become, the further removed they are from mere choice and the more they import notions of reasoned choice that applies standards other than mere choice. In other words, a kind of natural law develops that imposes objectively rational criteria.

One issue that is confounding for autonomy idealists is the fact that people can make autonomous choices that harm autonomy, such as suicide42 or drug-taking. If autonomy were a moral trump, then in order to protect autonomy, one would be required to prevent voluntary suicide that ends an autonomous life or prevent the abuse of drugs that diminish rational function or which are addictive.43

One must distinguish between respecting a person because he or she is autonomous (has the ontological status of being a chooser), or more particularly rationally autonomous (a rational chooser), on the one hand, and, on the other, respecting a person’s choices in relation to self-regarding matters as what is morally right for him or her—autonomy as a moral trump.

The first is the position taken by Aristotle and Aquinas in relation to man, the rational animal, who possesses free will. Because a man is the kind of being he is, he warrants respect for his worth and dignity. Precisely because we value him, we are not prepared to kill him, even if he wishes it.

The withdrawal of ordinary/non-burdensome care, which directly results in the death of the patient, would seem to be an omission that has as its object the deliberate ending of life and would not be permissible. The problem for the doctor is whether or not he or she knows the circumstances in which the declaration was made and the patient’s reasons for making the declaration, and the extent to which the doctor can accept that earlier decision as possibly being within legitimate moral bounds.

In practice we have advised doctors to consider that there is usually a range of options that fall within what may be considered reasonable medical care. The range may vary from aggressive medicine at one end to conservative medicine at the other. What is looked for in a declaration made in advance is what the patient would want within that range of reasonable care. While the patient’s wishes are limited by what is objectively acceptable, the patient makes a subjective decision within the range of what is objectively acceptable. This permits the patient to apply his or her own moral judgment about proportionality in relation to factors such as the burden to others (family, carers or society) of the treatment options and the burden to him or herself and the likely effectiveness of the treatment.

Advance declarations are always problematic if the circumstances are not known. There are also complications of patient declarations that are ambiguous, not independently witnessed, ill-informed, old or not very specific.

There is a need to identify whether:

a) The person was fully informed and that the later circumstances conform in relevant ways to the situation that he or she envisaged;

b) The person was acting freely and was not being coerced or pressured in any way to issue the declaration;

c) The person comprehended the impact of what he or she was declaring;

d) There is no reason to think that the declaration was made on immoral grounds, such as an intent to suicide.

Pope John Paul II writes:

To concur with the intention of another person to commit suicide and to help in carrying it out through so-called “assisted suicide” means to cooperate in, and at times to be the actual perpetrator of, an injustice which can never be excused, even if it is requested. In a remarkably relevant passage Saint Augustine writes that “it is never licit to kill another: even if he should wish it, indeed if he request it because, hanging between life and death, he begs for help in freeing the soul struggling against the bonds of the body and longing to be released; nor is it licit even when a sick person is no longer able to live.” Even when not motivated by a selfish refusal to be burdened with the life of someone who is suffering, euthanasia must be called a false mercy, and indeed a disturbing “perversion” of mercy. True “compassion” leads to sharing another’s pain; it does not kill the person whose suffering we cannot bear. Moreover, the act of euthanasia appears all the more perverse if it is carried out by those, like relatives, who are supposed to treat a family member with patience and love, or by those, such as doctors, who by virtue of their specific profession are supposed to care for the sick person even in the most painful terminal stages.”44

It is worth noting that most Western jurisdictions have removed the offence of suicide for practical reasons, but have:

• retained the offence of assisting suicide;

• retained the right of others (and the duty of those with a duty of care) to intervene with reasonable force to prevent a person from committing suicide if there is a reasonable belief that suicide is being attempted.

Presumably a doctor who had reasonable grounds for believing that an advanced directive was suicidal could continue to give life-maintaining treatment on those grounds. However, much may depend on the statutory provisions in relation to advanced declarations.

The problem for Catholic and pro-life doctors is that more and more Courts and Parliaments are giving an overriding significance to the declaration of a patient made in advance. Because such declarations are in reality dependent upon knowledge of the circumstances in which they are made, some flexibility may remain for doctors to interpret their application in a given instance. However, that flexibility may not be available if the interpretation of the patient’s wishes is in the hands of a Court or in the hands of an appointed representative who has been given that authority.

In those circumstances, the role of the doctor as decision-maker has been displaced. The matter then becomes a question of what the doctor is directed to do or not do, and whether the doctor’s diminished role as a decision-maker is formal cooperation in the immoral project or is so diminished that he or she is no longer formally part of the decision and hence only materially cooperates. If the latter is the case, then it may be that the doctor should withdraw, but it may also be the case that there is a morally acceptable role to perform as part of the team caring for the patient, which does not compromise the doctor’s moral integrity. The matter would need to be determined theologically according to an assessment of the principles that govern legitimate cooperation in moral evil.

The issue in each of these cases is the doctor’s witness to respect for human life made especially significant by his or her professional vocation.

The appointment of a person with enduring power of attorney for medical treatment or similar legal provision places that person in a position of acting with the authority of the patient.

Pius XII addressed the question of the representation of an incompetent patient in the following way:

What We say here must be extended to the legal representation of the person incapable of caring for himself and his affairs: children below the age of reason, the feeble-minded and the insane. These legal representatives authorized by private decision or by public authority, have no other rights over the body and life of those they represent than those people would have themselves if they were capable. And they have those rights to the same extent. They cannot, therefore, give the doctor permission to dispose of them outside of those limits.45

Very clearly, in this statement Pope Pius XII envisaged both that which we would now call “an enduring power of attorney (medical)” (private decision) appointed by the patient while competent, and that which we would call “a guardian” appointed by the State (public authority). It would seem clear therefore that the concepts of enduring power of attorney and State appointed guardians with the authority to make decisions concerning the medical treatment of a patient are morally legitimate options in the moral traditions of the Church.

The text also indicates that Pope Pius XII taught that the representatives of the patient have the same rights over the body and life of the patient as the patient would have had over him or herself. In the earlier section we addressed the moral obligations of the patient in relation to the refusal of artificial nutrition and hydration, which is not itself overly burdensome or disproportionate, on the grounds that the life itself is so disabled that it should not be prolonged or because the family is suffering and the patient would have refused. Evidently the representative of a patient has no greater right to refuse treatment.

Addressing himself to the proper role of the unconscious patient’s family, Pope Pius XII observes: “The rights and duties of the family depend on the presumed will of the unconscious patient, if he is of age and sui juris.”46

In relation to the family’s duty to provision care by the family he wrote: “Where the proper and independent duty of the family is concerned, they are usually bound to use only ordinary means.”47

Pope John Paul II in the sections to which we referred in our earlier discussion has of course explained what is meant by ordinary means more fully in terms of proportionality and burdensomeness by the Congregation.

The above teaching of Pope Pius XII about patient representation was referred to by the Congregation for the Doctrine of the Faith in 1980 in the Declaration on Euthanasia, as retaining its full force. However in 1995, a major difference emerged in the Charter for Health Care Workers.48

73. With regard to presumed consent, a distinction must be made between the patient who is in a condition to know and will know, and one who is not.

In the former, consent cannot be presumed: it must be clear and explicit.

In the latter case, however, the health care worker can, and in extreme situations must, presume the consent to therapeutic interventions, which from his knowledge and in conscience he thinks should be made. If there is a temporary loss of knowing and willing, the health care worker can act in virtue of the principle of therapeutic trust, that is the original confidence with which the patient entrusted himself to the health care worker. Should there be a permanent loss of knowing and willing, the health care worker can act in virtue of the principle of responsibility for health care, which obliges the health care worker to assume responsibility for the patient’s health.

74. With regard to the relatives, they should be informed about ordinary interventions, and involved in the decision making when there is question of extraordinary and optional interventions.

There is no scope in the Pontifical Council’s document for health care decision-making by those appointed by the patient or by the State. According to the Council, the authority for health care decision-making, when the patient is incompetent, vests in the health care worker in virtue of the principle of responsibility for health care. The family are to be “informed and involved,” but not ultimately responsible. There is no option here of the responsibility having been exercised by the patient in advance or having been entrusted by the patient or a legal process to a representative.

This places the Pontifical Council seemingly at odds with the law in Western democracies. The Council has also not taken into account the matters addressed in relation to patient representation by Pope Pius XII.

The Pontifical Council places immense confidence in health care workers in this instance, assuming the application of distinctions such as ordinary and extraordinary care and a notion of a moral duty to provide care that distinguishes between what is obligatory and what is morally optional. These may be very large assumptions to make about the health professions in a culture of death.

The Council also gives no advice about what precisely the role of the representative is and what the health professional’s obligations are when there is a person who is a legally appointed representative, such as a person holding a power of attorney for medical treatment or a person appointed to be a guardian.

In recent times, most Western jurisdictions have attempted to qualify the powers of a patient’s representative in relation to medical treatment, inserting patient’s best interest clauses and reference to the patient’s previously expressed wishes.

The inclusion of clauses of that nature give the health professional and other concerned persons the opportunity to question the adequacy of the representation and to seek to have the representation reviewed. Where the representative seems to be acting contrary to the patient’s interests, possibly acting for motives that are indifferent or not well-intentioned towards the patient, then we would argue that health professionals have an obligation to seek that review.

We live in different times from Pope Pius XII, and we live with structures that seem not to have been addressed by the Pontifical Council. In relation to Pius XII’s teachings, it does now seem necessary to qualify the role of representatives. In relation to the Pontifical Council, we cannot ignore the reality that the structures for representation in relation to medical treatment decisions exist and we need principles to guide health professionals in relation to the role of the representatives.

This is particularly the case in the culture of death where the trend is for “quality of life” assessments of care to threaten the survival of the disabled and the incompetent.

A doctor should be permitted to override a representative who refuses treatment that would maintain life and is not overly burdensome. This right ought to be protected in an emergency so that the doctor can initiate treatments that are not overly burdensome or disproportionate to protect life. In the event that there is a problem with a refusal of care that is not overly or disproportionately burdensome, such as artificial feeding, then there needs to be a mechanism, such as an appeal to a court or tribunal, by which a doctor can challenge the nature of the representation. It is important that where representation has a legal status there is the opportunity for a review of the representation upon request. It is also important that representatives not have an unfettered right to refuse treatment in a way that would neglect the fundamental obligation to use means of care that are not disproportionately burdensome.

NOTES

1. This assessment was subject to dispute in the court proceedings and no finding was made.

2. John J. Billings MD, “COMMENT: Allowing nature to take its course is not euthanasia” Newsweekly, 3 May 2003.

3. Note that the court said that there was no admissible evidence of any express wishes of the patient and that there are good reasons to doubt the family’s later recollections and surmises.

4. Bishop Anthony Fisher OP, “Death by little steps” Kairos, Vol. 14 No. 10, 15 June 2003

5. Note that there was a lack of evidence of her earlier conclusion.

6. John J. Billings MD, op. cit.

7. A reason given by Dr. Warwick Neville (Australian Catholic Bishops Conference) for the Church’s intervention was to protect staff in Catholic health and aged care facilities from acting against their conscience and/or Church teaching in relation to the provision of nutrition and hydration etc. in the event that relatives of a patient in their care sought and obtained an order from a tribunal or a court ordering the cessation of treatment or care. Thus there was a strong religious liberty dimension in the litigation. [Correspondence 5/1/04].

8. Pope John Paul II, Address to Participants in the International Congress on “Life Sustaining Treatments and the Vegetative State,” March 17-20, 2004, Rome.

10. Pope John Paul II, op. cit.

11. Ibid.

12. Ibid.

13. Speigelberg, Herman, “Human Dignity: A Challenge” in Human Dignity: This Century and the Next, edited by Rubin Gotesky and Ervin Laszlo; Gordon and Breach New York 1970 p. 44.

14. Ibid. p. 58.

15. Ibid. p. 61.

16. Second Vatican Council, Gaudium et Spes, December 7th, 1965, n. 14, 22, 24.

17. Luke Gormally email correspondence to Dr. Nicholas Tonti-Filippini, 30/12/03.

18. “Osmolite is also appropriate as an oral feed for patients with altered taste perception.” 2002 MIMS Annual, Twenty-sixth Edition, June 2002, 19-1346.

19. Pope John Paul II, Evangelium Vitae. Encyclical addressed to the Bishops, Priests and Deacons, Men and Women religious, lay faithful and all People of Good Will on the Value and Inviolability of Human Life, 25th May 2003, n. 65.

20. Pope Pius XII, “The Prolongation of Life”: an address to an International Congress of Anaesthesiologists, November 24, 1957, in AAS, 49 (1957) p. 1031.

21. W. Daniel Doty and Robert M. Walker, “Medical Futility,” Clinical Cardiology, Vol. 23 (Suppl, II) 2000.

23. Pope John Paul II, Evangelium Vitae, n.64.

24. Statement, March 20 2004, ibid.

25. Ibid.

26. Pope John Paul II, Veritatis Splendor, n. 78.

27. Veritatis Splendor n. 82.

28. Ibid. n. 79.

29. Pontifical Council for Pastoral Care to Health Care Workers, Charter for Health Care Workers, 1995, n.72.

30. Pius XII, “The Prolongation of Life,” Nov. 24, 1957, in AAS, Vol. 49 (1957) p. 1031.

31. Pont. Council Cor Unum, “Some Ethical Questions Relating to the Gravely Ill and the Dying,” July 27, 1981, in Enchiridion Vaticanum 7, Documenti ufficiali della Santa Sede 1980-1981. EDB, Bologna, 1985, p. 1137, n. 2.1.2.

32. John Paul II, “To the World Congress of Catholic Doctors,” Oct. 3, 1982, in Insegnamenti, V/3, p. 673, n. 4.

33. John Paul II, “To the participants at two congresses on medicine and surgery,” Oct. 27,1980, in Insegnamenti, III/2, 1008-1009, n. 5.

34. Pope Pius XII, “The Prolongation of Life,” Nov. 24, 1957, in AAS, Vol. 49, p. 1031.

35. We are grateful to Bishop Anthony Fisher, OP for the example.

37. Ibid, p. 13.

42. Immanuel Kant is often cited as the father of autonomy idealism. But Kant opposed suicide because it destroyed an autonomous individual and in his own painful terminal illness would forego pain relief in order to maintain lucidity. “Firstly, under the head of necessary duty to oneself: He who contemplates suicide should ask himself whether his action can be consistent with the idea of humanity as an end in itself. If he destroys himself in order to escape from painful circumstances, he uses a person merely as a means to maintain a tolerable condition up to the end of life. But a man is not a thing, that is to say, something that which can be used merely as means, but must in all his actions be always considered as an end in himself. I cannot, therefore, dispose in any way of a man in my own person so as to mutilate him, to damage or kill him. (It belongs to ethics proper to define this principle more precisely, so as to avoid all misunderstanding, e.g., as to the amputation of the limbs in order to preserve myself, as to exposing my life to danger with a view to preserve it, etc. This question is therefore omitted here.)” Immanuel Kant’s Fundamental Principles of the Metaphysic of Morals as translated by Thomas Kingsmill Abbott, 1965.

43. Also confronting for autonomy idealists who see themselves as libertarians is that the consumer generation thinks of “quality of life” not necessarily as the most autonomous life but also in terms of comfort, pleasurable experience and mobility. Their ideas are far removed from the stringent notion of the ideal character espoused by Kant or Locke. These “fathers of liberalism” are not the fathers of the contemporary permissive society.

44. Evangelium Vitae, n. 66.

45. Pope Pius XII, “Address to 1st International Congress on Histopathology of the Nervous System,” Sept. 14, 1952.

46. Pope Pius XII, “The Prolongation of Life,” Nov. 24, 1957, AAS, Vol. 49, p. 1031.

47. Ibid.

48. Pontifical Council for Pastoral Care to Health Care Workers, Charter for Health Care Workers, 1995.

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