"On
the CDF's Responses
Concerning Artificial Nutrition and Hydration"
Fr. Tom Knoblach, Consultant for Healthcare Ethics
On August 1, 2007, the Congregation for the Doctrine of the Faith issued responses to two questions regarding artificial nutrition and hydration (ANH) for patients in a "vegetative state." These questions were submitted to the CDF by Bishop William Skylstad on behalf of the United States Conference of Catholic Bishops (the full text can be found many places on the Web, including www.ncbcenter.org/CDF-FoodwaterPVS9-14-07.pdf). I will attempt to give some background to this development, although I admit things will get a bit complex in what follows.
Undoubtedly, the controversy surrounding the case of Terri Schiavo was an immediate impetus for presenting these questions to Rome, especially in light of the diverse interpretations given to Pope John Paul II's allocution on ANH in March, 2004. This allocution had stated that the provision of ANH was not a medical act and was, "in principle, obligatory, as long as and to the extent that it achieved its proper ends of preserving life and alleviating suffering."
However, this whole area has been a long-standing debate in legal, medical, ethical, and theological circles as technological interventions to sustain life became more successful and available in the 1970s and beyond; and the allocution itself received diverse responses. Despite some claims to the contrary, I regard that 2004 allocution, and this 2007 Response, as a clarification and correction of misinterpretations of the Catholic moral tradition, and not in any way a "revision" or change in that tradition.
Legally, courts at all levels (in the U.S. and abroad) have almost always ruled that ANH is a form of medical treatment that, like any other, may be forgone or withdrawn if it is judged medically futile, is contrary to the patient's wishes, or is considered excessively burdensome. Vast amounts of literature have debated these points: what do we mean by "futility?" What if a patient's wishes are contrary to the emerging standard of medical practice, or to those of the family or medical team? What happens if the patient is unresponsive or psychologically impaired? How do we assess "benefit" and "burden" correctly, particularly for patients who will not regain full consciousness?
The Church has consistently applied its moral teaching on ordinary and extraordinary means for the preservation of life to this question. This general distinction regarding means is concisely summarized in directives 56 and 57 of the U.S. Bishops' Ethical and Religious Directives for Catholic Health Care Services (ERD):
Here again, prudential judgments are essential to apply these general principles and define adequately, in each specific case, what is "reasonable," "excessive," "benefit," and "burden."
Directive 58 specifically states:
The questions recently submitted by the USCCB, then, were specifically related to the question of providing nutrition and hydration, even by artificial means, for patients in a "vegetative" state - that is, a state of minimal consciousness with internal regulation of temperature and respiration, sleep-wake cycles, and other basic life functions, but no discernible awareness of one's environment or purposeful activity. Such a state can be temporary or more enduring.
In response, the CDF simply restated the teaching of Pope John Paul's allocution
The administration of food and water, even by artificial means, is in principle an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.
The assumption here - and the accompanying CDF Commentary addresses this more fully - is that removing ANH would be the actual cause of death. The term "in principle" here means "in itself, all other things being equal," thus prescinding from other medical conditions or terminal illnesses that the patient may have, which may alter this obligation.
Even if the vegetative state is judged permanent - that is, it is judged with moral certitude that the patient will never recover consciousness - this obligation continues; the mere conviction that the patient will not recover consciousness is not sufficient alone to justify withholding ANH if there are no other complications.
However, the obligation does not hold "in very remote places or in situations of extreme poverty" when it is physically impossible to provide ANH. Further, the CDF notes:
* the possibility is not absolutely excluded that, in some rare cases, ANH may be excessively burdensome for the patient or may cause significant physical discomfort, for example resulting from complications in the use of the means employed.
In such cases, the obligation ceases.
These latter points were included to make clear that it is not intrinsically wrong to withhold or withdraw ANH, either; that is, it need not always be employed regardless of circumstances. The CDF is striving to engage the complexity of this question, which does not admit of a simple "yes or no" answer. Rather, prudential judgments regarding moral certitude are required, but beginning with the presumption in favor of ANH, even in a permanent vegetative state. "Presumption in favor of" ANH means that, in principle, ANH is ordinary care, and that strong, medically-based evidence must be presented why it ought not be used in a specific case. Such evidence does exist in some cases; but there must be serious, objective, and patient-centered reasons not to employ ANH.
Note again that these responses by the CDF relate specifically to the question of ANH for patients in a vegetative state - which is, thankfully, relatively rare. While the moral principles used in the Responses and Commentary definitely help to guide discussion about ANH in other circumstances (for instance, in dementia, trauma, or terminal illness), these documents do not authoritatively address these issues.
Like so many moral issues in our day, it is difficult - and often misleading - to oversimplify the matter of ANH and the Church's teaching. Even a glance at the Internet shows many divergent views on this latest statement. I encourage interested readers to read the CDF's Response and Commentary carefully. The statement from the National Catholic Bioethics Center (see www.ncbcenter.org) is also helpful for a more adequate understanding.
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A Brief Ethical Primer on Medically-Assisted Nutrition and Hydration
in the Catholic Tradition: The State of the Question
Father Tom Knoblach, Ph.D.
Consultant for Healthcare Ethics, Diocese of Saint Cloud
Introductory Comments
The provision of nutrition and hydration through the use of various medical
interventions – often referred to imprecisely as “tube feeding” – remains
one of the most complex and controversial issues in contemporary bioethics.
Media attention, even nationally, has focused on a number of high-profile
cases since the 1980s, involving persons receiving medically-assisted nutrition
and hydration (MANH): Claire Conroy, Paul Brophy, Nancy Cruzan, Christine
Busalacchi, Jamie Butcher, Hugh Finn, and Terri Schiavo are just a few of
the familiar names. In addition, many other persons are also recipients of
MANH; their cases, though not covered by the media, often share the same
complex moral issues of how best to care for those who cannot take food or
water on their own in a normal manner. Controversy often arises with patients
who are diagnosed in a “persistent vegetative state” (PVS), in
which brain stem functions like temperature regulation, wake/sleep cycles,
and other autonomic nervous system functions continue, but all detectible
activity of the neocortex has ceased, with no expected prospects for recovery.A
Complex Question
There is a great deal of complexity to the question of MANH behind the headlines,
even apart from the ethical controversies. Nutrition and hydration can be provided
by a variety of medical means, with varying degrees of risk and side effects.
A nasogastric (NG) tube is inserted through the nose and into the stomach,
and is better suited to short-term MANH. A percutaneous endogastric tube (PEG
tube) passes through an incision in the abdominal wall and into the stomach.
A jejunostomy tube also passes through the abdomen into a portion of the small
intestine. In addition to these tubes that enter the digestive system, MANH
can also be provided directly into the bloodstream through total parenteral
nutrition (TPN).
Further, MANH can be used to address a range of medical situations. Sometimes
MANH is a short-term, bridge technology until the person can resume regular
eating and drinking. At other times, it is required indefinitely to sustain
life. Some persons need MANH because there is no other way to receive needed
nutrients and fluids for medical reasons; some receive MANH because of shortages
of staff to do oral feeding.
And, the condition and prognosis of persons receiving MANH can vary greatly.
Important ethical differences exist between patients who depend solely on MANH
for continued survival but are otherwise not in a terminal condition, and patients
who are receiving MANH but for whom death is imminent for some other reason.
Thus, as with any other determination about medical interventions, an informed
decision about the use of MANH must take into account all the relevant factors:
the person’s diagnosis, prognosis, and current condition with any complicating
factors regarding the use of MANH; what are the treatment goals of the person
and of the medical staff caring for that person; what means of MANH is envisioned,
and for how long; the relative benefits to be realized and burdens to be endured
by the person with the means in question; and what are the side-effects, risks,
costs, and alternatives to using MANH in this situation. There is no single,
simple answer to the question of the feeding tube.A Long Debate
The ethical debate over MANH has a long history, which will not be reviewed
here. Over forty courts in the U.S. have addressed this issue in the past several
decades, and an almost universal legal consensus exists that MANH are medical
treatments that may be withheld or withdrawn following the same decision-making
process as would be used for any medical procedure. These court decisions have
relied heavily upon the legal principle of individual autonomy in making health
care decisions.
Since many of these cases have involved persons who lacked decision-making
capacity, the courts have spurred development of advance directives and the
value of ethics consultation. Their decisions have extended the notion of individual
autonomy through such concepts as the “subjective standard” (relying
upon any prior explicit oral or written statements made by the person to guide
current treatment decisions); “substituted judgments” (attempting
to discern what the person would have wanted based on knowledge of his or her
personal value system and other statements of preference); and the “best
interests” standard (in the absence of knowledge about the person’s
preferences regarding treatment decisions, the attempt is made to discern what
would be in the person’s best interests in light of what is known of
his or her life plan, the standards of medical practice, the person’s
diagnosis and prognosis, and the overall context of the situation).
Within the medical field, less consensus exists. Surveys suggest that responding
clinicians are divided roughly down the middle: about half think that MANH
is more like basic care and therefore must be considered by different standards,
while about half support considering MANH by the same decision-making standards
as with any other medical intervention. Yet even these latter clinicians generally
think that withholding or withdrawing MANH is appropriate only when 1) it is
truly medically futile; that is, unlikely to provide effective nutritional
support or to prevent dehydration; or 2) when the patient would experience
no real benefit beyond maintaining biological life; or 3) when the burdens
for the patient outweigh the benefits expected from using MANH.
While these conditions are fairly easy to state in concise terms, assessing
each of them is accompanied with imprecision, subjective judgments, and various
subjective interpretations of what is meant by futility, benefit, and burden.
Individuals may agree with these general principles but reach very different
conclusions about particular cases. This is not surprising; a mathematical
degree of certitude is not be expected in ethical decisions. As the great Greek
philosopher Aristotle wrote over 2300 years ago: “It is wisdom to expect
no more certainty than the subject matter allows.” When controversial,
life-and-death questions arise, our often-unexamined presumptions must be made
explicit. It is important to remember that people of good faith may disagree
with the interpretation and application of ethical principles. In the face
of this imprecision, we must also consider the degree to which important values – like
life itself – may be put at risk.Within the Catholic Tradition.
Given the above considerations, it is not surprising that within the Catholic
tradition, a number of theologians and ethicists, along with various groups
of bishops in the United States and elsewhere, have come to different conclusions
in studying this issue, and divergent viewpoints remain. Central questions
continue to revolve around whether MANH is a medical intervention that can
be withheld or withdrawn even if death is not imminent, or if it always constitutes
basic and ordinary care; the difficulty in diagnosing PVS with certitude; how
to make determinations about the quality of life of persons in PVS; how to
assess the benefits and burdens associated with the use of MANH; and confusion
about the various methods and uses of MANH.
Key documents for understanding the Church’s current teaching on MANH
are the following: the Congregation of the Doctrine of the Faith, Declaration
on Euthanasia (Jura et bona) (May 5, 1980); U.S. Bishops’ Committee on
Pro-Life Activities, Moral and Pastoral Reflections on Artificial Nutrition
and Hydration (April 2, 1992); U.S. Bishops, Ethical and Religious Directives
for Catholic Health Care Services, fourth edition (2001), directive 58; and
John Paul II’s allocutio on March 20, 2004 to the International Congress
on “Life-Sustaining Treatments and the Vegetative State: Scientific Progress
and Ethical Dilemmas.”
The CDF’s 1980 Declaration on Euthanasia (Jura et Bona) stated the Church’s
continuous teaching that the direct and intentional killing of an innocent
human being is wrong, even if done with a subjectively good intention to alleviate
suffering. It also noted the increasing complexity of making decisions about
the use of medical technology to sustain life, and emphasized the general principles
that ordinary (or “proportionate”) means are always to be used
to sustain life, and that extraordinary (or “disproportionate”)
means may be used to sustain life although no one is morally required to use
them. Even when the decision is made not to pursue extraordinary means, the
normal care given to any sick person must be continued. Jura et Bona did not
address the specific question of MANH. (For more information on these questions,
see A Brief Ethical Primer on Medical Decisions Regarding Life-Sustaining Treatments
in the Catholic Tradition.)
The Moral and Pastoral Reflections on Artificial Nutrition and Hydration from
the U.S. Bishops’ Committee on Pro-Life Activities is an important piece
in the developing history of teaching in this issue, but it does not carry
the Magisterial weight of the other documents cited. It was a work prepared
by the Committee but not brought to a vote or approved by the full body of
bishops. The research and reasoning regarding this question provide useful
background, but it is perhaps most significant for its influence on the wording
of Directive 58 of the Ethical and Religious Directives for Catholic Healthcare
Services (ERD). The ERDs are approved by the whole body of U.S. bishops and
are periodically revised to stay current with developments in medical technology
and moral theology. The latest version is the Fourth Edition, approved in 2001.
Directives 56 and 57 restate the teaching of Jura et Bona:
Dir. 56. A person has a moral obligation to use ordinary or proportionate means
of preserving his or her life. Proportionate means are those that in the judgment
of the patient offer a reasonable hope of benefit and do not entail an excessive
burden or impose excessive expense on the family or the community.
Dir. 57. A person may forgo extraordinary or disproportionate means of preserving
life. Disproportionate means are those that in the patient’s judgment
do not offer a reasonable hope or benefit or entail an excessive burden, or
impose excessive expense on the family or the community.
These are general principles, subject to interpretation and application in
specific cases, as noted. In cases where the patient is not capable of rendering
a competent judgment, a surrogate decision-maker steps in to assist with the
moral discernment about life-sustaining means. This is discussed in directive
25:
Dir. 25. Each person may identify in advance a representative to make health
care decisions as his or her surrogate in the event that the person loses the
capacity to make health care decisions. Decisions by the designated surrogate
should be faithful to Catholic moral principles and to the person’s intentions
and values, or if the person’s intentions are unknown, to the person’s
best interests. In the event that an advance directive is not executed, those
who are in a position to know best the patient’s wishes – usually
family members and loved ones – should participate in the treatment decisions
for the person who has lost the capacity to make health care decisions.
Because of the complexity and controversy that continue to surround MANH, these
general principles are applied to this specific technology in directive 58,
following the lead of the 1992 Moral and Pastoral Reflections on Artificial
Nutrition and Hydration:
Dir. 58. There should be a presumption in favor of providing nutrition and
hydration to all patients, including patients who require medically assisted
nutrition and hydration, as long as this is of sufficient benefit to outweigh
the burdens involved to the patient.
Note that directive 58 speaks of a presumption in favor of MANH, but does not
mandate its use in every case. The basic criterion for deciding whether this
presumption in favor of MANH is verified in the specific case is that the benefits
expected outweigh the burdens on the patient. Again, these general principles
do not settle the complex question of the nature and assessment of these “benefits
and burdens.” This leaves both room and need for interpretation. It was
arguably to advance this interpretation of understanding the benefits and burdens
of MANH in the persistent vegetative state, and to correct some misinterpretations
that have developed within healthcare in the past fifteen to twenty years,
that prompted Pope John Paul to address these questions in his allocutio of
March 20, 2004.
The Papal Allocutio of March 20, 2004
The March 2004 papal allocutio is the latest and most authoritative statement
of the Catholic position on MANH, although it only applies the earlier teaching
on MANH to the specific and vexing question of MANH in PVS. This primer therefore
discusses the allocutio with regard to MANH in PVS, and speculates on the possible
implications of this papal teaching.
It is essential to note that current papal teaching addresses in detail only
the specific question of medically-assisted nutrition and hydration for persons
presumed to be in the persistent vegetative state. While this is a crucial
question, it is not the only situation in which MANH is employed. Therefore,
the views expressed in this Primer regarding the use of MANH in other situations
do not represent definitive Church teaching as of this writing, but are strictly
the interpretation of this author. As such teaching develops, this Primer will
be adapted to reflect such developments.
The full text of this allocutio is found appended to this Primer. The following
discussion summarizes the allocutio and discusses in more detail the particular
texts that address MANH itself.
Pope John Paul delivered an allocution to the participants in the International
Congress on “Life-Sustaining Treatments and the Vegetative State: Scientific
Progress and Ethical Dilemmas,” held in Rome from March 17-20. This Congress
was organized and promoted by the International Federation of Catholic Medical
Associations (FIAMC), and by the Pontifical Academy for Life.
In the allocution, the Pope makes several key points important for understanding
his remarks on MANH. First, he acknowledges the great and important contributions
of scientists and researchers who dedicate themselves to investigate the “vegetative
state.” He encourages their efforts to find better ways to diagnose it
accurately, to predict its course, and to provide therapies and rehabilitation
for persons in this condition to the extent possible. He notes the difficulties
in correctly diagnosing the vegetative state, referring to studies that have
shown up to 43% of patients misdiagnosed and to cases of recovery after a period
of time and sometimes with persevering rehabilitative efforts. Currently, medical
science simply cannot predict with accuracy which persons will recover consciousness
and which will not, and why their cases diverge. At the same time, he accepts
that some persons will indeed not recover and will remain in lifelong dependence
on others.
The Pope goes on to comment that the term “permanent vegetative state” (PVS)
[sometimes also known at persistent vegetative state] has been coined to indicate
that recovery of consciousness is highly unlikely for those who have been in
this state for over a year. (Medically, the type of brain injury influences
this time period: for injuries caused by anoxia [lack of oxygen], unresponsiveness
lasting longer than six months is considered “permanent;” while
for traumatic brain injuries like blows and falls, a period of one year is
allotted before the term “permanent” is assigned. The Pope’s
comment covers both). He notes that PVS does not refer to a different diagnosis
or separate condition, but simply reflects a “conventional predictive
judgment related to the fact that the recovery of the patient, statistically
speaking, is always more difficult the longer the condition of the vegetative
state is prolonged in time.”
Next, the Pope notes that the term “vegetative state,” although
it is in common usage, is unfortunate if it reflects a judgment of lower value
or lesser dignity for PVS patients. He says: “I feel the need to reaffirm
with vigor that the intrinsic worth and the personal dignity of every human
being do not change, whatever might be the concrete circumstances of his life.
A man, even if gravely ill or impeded in the exercise of his higher functions,
is and will always be a man, never becoming a ‘vegetable’ … Even
our brothers and sisters who find themselves in the clinical condition of the “vegetative
state” retain completely their human dignity. The loving attention of
God the Father continues to rest on them, recognizing them as His children
in particular need of help.” Due to the negative connotations of the
term “vegetative state,” some have proposed new terminology, such
as “post-coma unresponsiveness.”
Thus, PVS patients retain their complete human dignity. Their very dependence
creates moral duties on the part of medical professionals, society, and the
Church. Whether they will recover or die, they retain the right to basic health
care. He notes in particular their right to nutrition, hydration, hygiene,
a comfortable environment, and the prevention of complications they might face
due to being confined to bed. They also have the right to efforts at rehabilitation
and to clinical monitoring of signs of eventual recovery. Thus, even though
they may not recover awareness and meaningful interaction with others or their
environment, PVS patients retain their moral claim, as persons, on the care
and expertise of medical professionals and society.
Then, the Pope addresses the specific question of MANH in PVS:
In particular, I wish to underscore that the administration of water and food,
even when given through artificial means, always represents a natural means
of the conservation of life, not a medical act. Its use therefore will be considered,
in principle, ordinary and proportionate, and as such morally obligatory, in
the measure in which and to the extent that it is shown to achieve its proper
end, which in this case consists of procuring the nutrition of the patient
and the alleviation of suffering.
Several key points are made here. First, he addresses an ongoing debate about
how to categorize MANH. Some have argued that assisted feeding in any way is
a “medical act” (even when a patient is assisted by another to
eat orally, without the complexities of feeding tubes). Pope John Paul asserts
that this is a false interpretation, and that such assistance – no matter
how delivered – is essentially a natural means to conserve life. He is
arguably concerned to preserve the centrality of the person receiving care:
the fact that one is being fed, bathed, housed, or clothed in a medical facility
does not change the very nature of those acts of ordinary human life in “medical
acts.” Taking an aspirin in a hospital bed, in a nursing home, or in
one’s own kitchen, is in itself the same act. It does not become subject
to radically different ethical standards by the “accident of place” (philosophically
speaking).
Second, since providing nutrition and hydration is a natural means, it is in
principle ordinary and proportionate. “In principle” here means
considering MANH in and of itself, apart from any extenuating circumstances
that may be involved in the particular case. This can be interpreted as equivalent
to Directive 58 of the ERD: that the presumption is in favor of its use. In
other words, it is presumed that MANH will be used, and credible and sufficiently
weighty evidence must be produced to show why it should not be used in a particular
instance. This evidence must be based in medical reasons for the patient (as
opposed to demographic, economic, or social reasons surrounding the patient),
and must demonstrate that using MANH is “disproportionate” – in
other words, that the burdens on the patient are out of proportion to the benefits
the patient will receive from using MANH. This can be contrasted with what
is arguably the prevailing presumption (legally and medically) that MANH will
not be used in PVS, requiring instead that credible and sufficiently weighty
evidence must be produced to show why it should be used. In either case, the
evidence to be considered, based in the assessment of benefits and burdens,
is the same. But the attitude and presumptions with which that evidence is
evaluated is very different. Arguably, then, the Pope is attempting to counter
the developing presumption that MANH in PVS is extraordinary in principle (that
is, considered in and of itself) and requires strong evidence in order to use
it. Instead, he is teaching that in principle, MANH is ordinary, that the presumption
is in favor of its use, and that strong, medically-based evidence must be presented
why it ought not be used in a specific case.
As a presumptively ordinary and proportionate means to conserve life, MANH
for PVS patients is morally obligatory. This simply applies the teaching of
Jura et Bona to the question. The next clause is crucial: “in the measure
in which and to the extent that it is shown to achieve its proper end, which
in this case consists of procuring the nutrition of the patient and the alleviation
of suffering.” The Pope’s words do not require the use of MANH
in every case: the moral obligation is conditioned by the medical efficacy
of the means used to achieve its proper end: to nourish the patient and alleviate
suffering. When it is medically demonstrable that these ends are not being
achieved, the moral obligation to use MANH ceases. Thus Pope John Paul is not
reversing the moral tradition on the use of life-sustaining means by requiring
that a particular intervention (MANH) must be used in every case. He is simply
specifying that the withholding or withdrawing of this particular intervention
requires a founded medical reason not to provide the minimal and ordinary care
of providing nutrition and hydration to the PVS patient.
It is also important that the Pope specifies the medical goals of MANH: the
patient receives necessary nutrition and his or her suffering is alleviated.
Eventual recovery of consciousness or the ability to interact meaningfully
with others is not among the medical goals that must be attainable before the
use of MANH is justified.
The Pope goes even further to specify that not only is the interruption of
MANH in PVS unjustified when these means are achieving their own proper end,
but that such an interruption constitutes euthanasia by omission when it is
deliberately and intentionally done. In other words, when MANH is withheld
or withdrawn precisely in order to bring about death (prompted by whatever
subjective motivation), it is euthanasia and thus never morally justified.
Pope John Paul anticipates several objections to this treatment of MANH in
PVS. He acknowledges the lack of certitude that can accompany judgments about
matters such the quality of life of the PVS patient, his or her suffering,
and potential benefits enjoyed the patient. Both the experience of benefits
and burdens is conditioned by being in a persistent vegetative state, and by
the very fact that such patients may not be conscious of benefits, neither
are they conscious of burdens. Precisely because of this lack of certitude,
the Pope appeals to the long moral tradition of erring on the side of preserving
life when in doubt: “even simple doubt of being in the presence of a
living person already imposes the obligation of full respect and of abstaining
from any action directed at anticipating his death.”
Discussions of “quality of life” were developed in the course of
wrestling with questions about the use of life-sustaining technology. This
concept is acceptable in itself when it attempts to integrate the experience
of benefits and burdens into the whole of the person’s life and its ultimate
purpose, as Jura et Bona argued. However, “quality of life” judgments
can sometimes be used to assert that the very lives of some persons are of
lesser value or “quality” and that therefore less demanding moral
standards can be employed in assessing interventions for those persons.
Pope John Paul notes that in practice, “quality of life” judgments
are often motivated by psychological, social, and economic pressures. In other
words, the meaning of “quality of life” is shifted subtly away
from considering the subjective experience of benefits and burdens in the individual
patient’s own life. Instead, “quality of life” can come to
mean how persons around the patient assess benefits and burdens – either
projecting their own interpretations of the experience of the patient’s
benefits and burdens upon him or her, or effectively substituting considerations
of their own benefits and burdens in caring for the patient for his or her
own benefits and burdens in receiving care. The focus is taken off the patient’s
quality of life in itself and placed upon the impact of the patient’s
life on others. While this is an important aspect to consider, since we are
relational beings, the Pope insists that these relational, psychological, social,
or economic factors cannot prevail over the right of the individual patient,
even if severely debilitated, to ordinary care, including MANH when it is medically
effective and therefore proportionate. The quality of life of an individual
is something intrinsic and discovered by observation, not a measure of the
individual’s value as something extrinsic and either attributed or withheld
by others.
As a final aspect of the consideration of the quality of life of the patient
in PVS, he notes we cannot exclude the possibility that the person will experience
suffering when MANH is withheld. As he writes: “modern techniques of
clinical neurophysiology and of cerebral diagnosis through imaging in fact
seem to indicate that elementary forms of communication and of analysis of
stimuli perdure in these patients.” Here again, in the face of doubt,
we must do our best to err on the side of the avoidance of suffering, seeking
clinical evidence rather than presumptions that the patient in PVS does not
suffer.
Finally, the Pope concludes his allocutio by acknowledging the real sufferings
and burdens experienced by families and other concerned persons when a loved
one is afflicted with PVS. He asserts that it is not sufficient merely to teach
that MANH may not be withdrawn based on false quality of life judgments; we
must also promote those positive actions that will counteract pressures to
resort to such judgments at all. First, he encourages concrete forms of support
for families who have had a member afflicted with this “terrible condition”: “they
may not be left alone with their heavy human, psychological, and economic burden.” Even
when the financial cost of caring for PVS patients may not be particularly
high, society has the responsibility to assist with this care, not only in
terms of monetary help, but also the creation of organized networks for rehabilitation
efforts, economic support to the family when the patient is returned home after
rehabilitation efforts, and “the creation of structures of help in cases
in which there may not be a family able to cope or to offer periods of respite
to families at risk of psychological or moral weariness.” Above all,
these forms of support must not only provide the material necessities of care,
but psychological support, spiritual counsel, pastoral care, and solidarity
so that medical professionals and volunteers helping with care may be “understood
by families as their allies in their struggles” and may help to “alleviate
the isolation of the family and to help them to feel a precious part of society,
and not abandoned from its network.”
Possible Implications for MANH in Other Conditions
Again, it is important to keep the Pope’s remarks in their proper and
intended context: he is speaking specifically about the provision of MANH to
patients judged to be in the persistent vegetative state. Extrapolating his
teaching to the use of MANH in other medical conditions must be done carefully,
with respect and docility for the Pope’s actual teaching and the broader
Catholic moral tradition of which it is an integral part.
That being said, it is the opinion of the author of this Primer that it is
important to avoid two extremes: first, that the Pope’s teaching in this
allocutio is immediately and directly applicable to all patients receiving
MANH, and second, that his teaching has no relevance for discerning the use
of MANH for patients not in a persistent vegetative state. I believe that both
of these extremes are false. The first is false because the Holy Father addressed
a very specific and limited question, and did not explicitly comment on the
use of MANH in general. To generalize his remarks and apply them authoritatively
to questions he did not address does not respect the integrity of the actual
teaching. On the other hand, the Pope is referring to the broader ethical tradition
of the Church on limits to the use of medical technology and it is equally
an error to ignore this broader context.
Much of the quandary about how the present allocutio applies to other uses
of MANH can be resolved if it is read in light of that larger tradition. It
is my opinion that the Pope did not intend to introduce any new teaching or
to single out MANH as an exception to the traditional discernment of ordinary
and extraordinary means. Rather, I suggest he is correcting some prevalent
misinterpretations of that traditional discernment, and underscoring some of
its key points. Arguably, these key points include: 1) the inviolable dignity
of the human person, regardless of his or her state of development or decline;
2) the right of each person to receive ordinary means to preserve life and
alleviate discomfort; 3) the necessity that judgments that using a medical
technology is futile or excessively burdensome be based on the actual medical
condition and status of the patient, and not on external and potentially arbitrary
evaluations of that person’s “quality of life”; 4) assuring
that even if a means is determined to be extraordinary or disproportionate,
and is thus withheld, the person must still be the object of care, comfort,
and love; 5) that the value of the person’s life does not depend on some
functional criteria or capacities, but simply on his or her being made in the
image of God, redeemed by Christ, and called to eternal life; and 6) that even
a radically poor prognosis does not justify intentional actions to end the
person’s life.
When making discernments about the use of MANH, whether the patient is in a
PVS or not, it is important to recall that current teaching holds that there
is a presumption in favor of its use. That is, all things being equal, even
if the patient will not recover consciousness or normal health, the use of
MANH to preserve life is presumed to be the appropriate course, and the evidence
for and against its use in a particular case is to be weighed beginning with
that presumption. As a presumption, however, it does not imply an exceptionless
requirement to use MANH.
Several factors must be weighed in the discernment about a specific case. When
applying the Pope’s comments to conditions the frail elderly are far
more likely to suffer (such as Alzheimer’s disease, Parkinson’s
disease, cancer, or stroke), both the benefits and burdens must be weighed.
In such cases, the possible benefits include: improved nutritional status;
the prolongation of life; the symbolic value of giving food and drink; relief
of hunger and/or thirst when they are experienced by the patient; helping to
preclude aspiration pneumonia from improper oral feeding; reducing the risk
of pressure sores and infection due to poor nutrition and immobility; improving
patient function; and providing comfort. The possible risks and burdens of
MANH include: for nasogastric tubes: irritation and discomfort; the need for
restraints if the tube is pulled out repeatedly by the patient; and for PEG
tubes: infections; bowel perforation; diarrhea and cramping; nausea and vomiting;
blockage; leaking from the tube; aspiration if improper methods of feeding
are used. With any form of MANH, if the body can no longer assimilate what
is provided by the tubes, and death is imminent, providing MANH can actually
serve to increase the patient’s discomfort.
It is crucial to note that there is no clear consensus on how to assess and
weigh some of these benefits and risks, and no clear evidence on its advantages
or disadvantages for many patients (for instance, those with dementia). The
use of MANH remains a controversial and complex question. However, it is my
opinion that the broader Catholic tradition on discerning whether a given medical
intervention is an ordinary/proportionate or extraordinary/disproportionate
means can be reliably applied to MANH as well. If done with prudence and in
good faith, and with the principles underscored by Pope John Paul’s allocutio
of March 20, 2004, a morally certain conclusion can be reached that respects
life as a gift from God that is to be preserved when reasonably possible, but
can be surrendered back to Him in good conscience when the benefits of its
preservation by medical means are outweighed by the burdens connected with
those means.
Appendix: The Text of the Papal Allocutio of March 20, 2004
[N.B.: the allocutio was originally written in Italian. This translation is
by the author. The Italian text and the Vatican translation into English
can be found at www.vatican.va]This morning, the Holy Father John Paul II
received in audience the participants in the (March 17-20, 2004, at the Augustinianum),
organized and promoted by the International Federation of Catholic Medical
Associations (FIAMC), and by the Pontifical Academy for Life.
We report the following discourse that the Pope gave to those present in the
course of the meeting:
Discourse of the Holy Father
Esteemed Ladies and Gentlemen!
1) Most cordial greetings to all of you who are participating in the International
Congress on “Life-Sustaining Treatments and the Vegetative State: Scientific
Progress and Ethical Dilemmas.” I wish to offer a particular greeting
to Monsignor Elio Sgreccia, vice-president of the Pontifical Academy for Life,
and to Professor Gian Luigi Gigli, President of the International Federation
of Catholic Medical Associations and generous champion of the fundamental value
of life, who acted as an eloquent spokesman of our common feelings.
This important Congress, organized jointly by the Pontifical Academy for Life
and by the International Federation of Catholic Medical Associations, is confronting
a theme of great relevance: the clinical condition called the “vegetative
state.” The complex scientific, ethical, social, and pastoral implications
of such a condition necessitate a profound reflection and a fruitful interdisciplinary
dialogue, as shown in the substantial program of your work.
2) With living esteem and sincere hope, the Church encourages the efforts of
the men of science who daily, and often with great sacrifices, dedicate their
labors to study and research for the improvement of diagnostic, therapeutic,
prognostic, and rehabilitative possibilities regarding these patients who are
totally entrusted to those who care for and assist them. The person in the
vegetative state, in fact, gives no evident sign of consciousness of self or
of awareness of the environment, and seems incapable of interacting with others
or of reacting to stimuli.
Scholars advise that is necessary first of all to persevere toward a correct
diagnosis, which normally requires a long and attentive observation in specialized
institutions, taking into account the high number of diagnostic errors reported
in the literature. Not a few of these persons, with appropriate care and with
programs aimed at rehabilitation, are able eventually to emerge from coma.
Many others, on the contrary, unfortunately remain prisoners of their state
even through a long period of time, without the need for technological support.
In particular, to indicate the condition of those whose “vegetative state” is
prolonged for more than a year, the term “permanent vegetative state” has
been coined. In reality, such a definition does not refer to a different diagnosis,
but only to a conventional predictive judgment related to the fact that the
recovery of the patient, statistically speaking, is always more difficult the
longer the condition of the vegetative state is prolonged in time.
Nevertheless, it should not be forgotten or undervalued that there are well
documented cases of at least partial recovery, even after many years, which
affirm that medical science, even today, is not yet able to predict with confidence
which patients in this condition will be able to recover and which will not.
3) The deficiency of a patient in similar clinical conditions is not sufficient
to put into doubt the persistence of the same “human quality,” so
that the adjective “vegetative” (the use of which is now common)
symbolically descriptive of a clinical state, might or must be referred instead
to the sick person is such a way that degrades the fact of his worth and personal
dignity. In this sense, one notices how terms, even confined to the clinical
setting, may certainly not be the most appropriate in referring to human subjects.
Against similar tendencies of thought, I feel the need to reaffirm with vigor
that the intrinsic worth and the personal dignity of every human being do not
change, whatever might be the concrete circumstances of his life. A man, even
if gravely ill or impeded in the exercise of his higher functions, is and will
always be a man, never becoming a “vegetable” or an “animal.”
Even our brothers and sisters who find themselves in the clinical condition
of the “vegetative state” retain completely their human dignity.
The loving attention of God the Father continues to rest on them, recognizing
them as His children in particular need of help.
4) Toward such persons, doctors and healthcare workers, society, and the Church
have moral duties from which they may not exempt themselves without failing
in their responsibilities whether of professional requirements or of human
and Christian solidarity.
Those afflicted in the vegetative state, awaiting either recovery or their
natural end, have therefore the right to basic health care (nutrition, hydration,
hygiene, a comfortable environment, etc.), and to the prevention of complications
joined to being bedridden. They also have the right to interventions aimed
at rehabilitation and to the monitoring of clinical signs of eventual recovery.
In particular, I wish to underscore that the administration of water and food,
even when given through artificial means, always represents a natural means
of the conservation of life, not a medical act. Its use therefore will be considered,
in principle, ordinary and proportionate, and as such morally obligatory, in
the measure in which and to the extent that it is shown to achieve its proper
end, which in this case consists of procuring the nutrition of the patient
and the alleviation of suffering.
The obligation not to omit “the normal care given to the sick in similar
cases” (Congregation for the Doctrine of the Faith, Iura et bona, part
IV) includes, in fact, also the need for feeding and hydration (cfr. Pontifical
Council “Cor Unum,” Dans le cadre, 2.4.4; Pontifical Council for
the Pastoral Care of Healthcare Workers, Carta degli Operatori Sanitari, n.
120). The evaluation of probabilities, founded upon small hopes for recovery
when the vegetative state has persisted for over a year, cannot ethically justify
the abandonment or interruption of the minimal care of the patient, including
feeding and hydration. Death through hunger or thirst, in fact, is the only
possible result following their suspension. In this sense, it becomes, if effected
consciously and deliberately, truly and properly euthanasia by omission.
On this topic, I recall what I wrote in the encyclical Evangelium vitae, clarifying
that “by euthanasia in the true and proper sense one intends an action
or an omission that of its own nature and intention procures death, such that
all suffering may be eliminated”; such an action always represents a
grave violation of the Law of God, since the deliberate killing of a human
person is morally unacceptable” (n. 65).
Moreover, one notes the moral principle according to which even simple doubt
of being in the presence of a living person already imposes the obligation
of full respect and of abstaining from any action directed at anticipating
his death.
5). Considerations surrounding “quality of life,” often dictated
in reality by psychological, social, and economic pressures, cannot prevail
over these points of reference.
Above all, no evaluation of expenses may prevail over the value of the fundamental
good that one seeks to protect: human life. Moreover, to admit that one may
judge the life of man on the basis of an external recognition of its quality
is equivalent to recognizing that to any subject may externally be attributed
increasing or decreasing levels of quality of life, and therefore of human
dignity, introducing a discriminatory and eugenic principle into social relations.
Besides, according to many reports from reliable studies, it is not possible
to exclude a priori that removing feeding and hydration may cause great sufferings
for the sick person, even if we can only see reactions at the level of the
autonomous nervous system or of gestures. Modern techniques of clinical neurophysiology
and of cerebral diagnosis through imaging in fact seem to indicate that elementary
forms of communication and of analysis of stimuli perdure in these patients.
6). Nevertheless, it is not enough to reaffirm the general
principle according to which the value of the life of a person cannot be subject
to a judgment
of quality expressed by other persons; it is necessary to promote positive
actions to counteract the pressures for the suspension of hydration and nutrition
as means to bring about the end of the lives of these patients.
Required first of all is to sustain the families that have had this terrible
clinical condition befall their loved ones. They may not be left alone with
their heavy human, psychological, and economic burden. Although the assistance
to these patients may not be particularly costly in general, society must devote
sufficient resources to the care of this type of fragility, through realizing
opportune concrete initiatives such as, for example, the creation of a united
network for recuperation, with specific programs of assistance and rehabilitation;
economic sustenance and assistance to the family in the home when the patient
is transferred to the home at the end of the program of intensive rehabilitation;
the creation of structures of help in cases in which there may not be a family
able to cope or to offer periods of respite to families at risk of psychological
or moral weariness.
Appropriate assistance to these patients and their families must, above all,
provide presence and evidence of doctors and other healthcare workers, who
should be understood by families as their allies in their struggles; also the
participation of volunteers represents a fundamental support to alleviate the
isolation of the family and to help them to feel a precious part of society,
and not abandoned from its network.
In these situations, then, spiritual counsel and pastoral help are of particular
importance, as a help to discover the deeper significance of an apparently
hopeless condition.
7) Esteemed ladies and gentlemen, in conclusion I exhort you, as persons of
science, responsible for the dignity of the medical profession, to safeguard
jealously the principle according to which the true duty of medicine is “to
cure if possible, always to care.”
To confirm and to support this authentic humanitarian mission of yours to comfort
and assist our suffering brethren, I remind you of the words of Jesus: “In
truth I say to you: every time you did this for one of these least of my brothers,
you did it to me” (Matt. 25:40).
In this light, I invoke upon you the help of Him Whom a suggestive patristic
formula calls “Christ the Physician” and, in committing your work
to the protection of Mary, the Consoler of the afflicted and the comfort of
the dying, I impart to all with affection a special Apostolic Blessing.