SPARKS,
Richard C.
To
Treat or not to Treat?. Bioethics and the Handicapped Newborn
Paulist
Press, New York 1988
CONTENTS
The
book’s key question is: On what basis is the decision to forego or cease
treatment made? Other questions include: When is non-treatment effectively
paediatric euthanasia? What is "over treatment"?. "Handicapped
newborns" is an umbrella term for infants usually afflicted with a series
of congenital and therapy-related problems. The answers, of course, have
relevance at the other end of the spectrum for "the declining members of
society".
The
author approaches this medical area with competence and professionalism. He
discusses the moral issues by utilizing four ethical standards strung between
two hypothetical poles which he calls "absolute vitalism" and
"absolute autonomy". They are termed:
(1)
A Medical Indications Policy (also called "medical feasibility").
(2)
A Means-Related Approach to Ordinary/Extraordinary Means.
(3)
The Projected Quality of the Patient’s Life.
(4)
A socially-Weighted Benefit/Burden Calculus.
The
fundamental presuppositions and methodology of a medical indications policy
include such elements as:
1.
The inherent dignity of every human life as fashioned in the image of God the
Creator.
2.
The radical equality of all human life, therefore procedures like triage are
discriminatory
3.
Responsible persons have interrelational obligations to one another and to the
commonweal
4.
A heavily deontological (law-based, absolutist) ethic.
The
absolute criterion for judgement is to ascertain what serves the patient’s best
interest medically speaking? It should endeavour to achieve the maximum medical
result in treatment. Such a methodology has the onus of explaining the
relationship between medical feasibility and moral acceptability because they
are not co-terminous. "Medical indications proponents are to be commended
for allowing the parents of so-called irreversibly, imminent dying infants to
withhold or withdraw further futile therapies, shifting over to human care and
psychological support" (p.59).
The
school’s most prominent member is the ethicist Paul Ramsey and "they are
to be commended for their eloquent articulation of fears about creeping
subjective autonomy, utilitarianism, and a perfectionist bias against the
handicapped in our society... for their defence of inherent rights and
corresponding duties against pure consequentialism or social utilitarianism.
These qualified compliments notwithstanding, ultimately a medical indications
policy is too restrictive and thus inadequate to the task of determining when
to withhold or withdraw treatment from severely handicapped newborns. Weak on
the physiological, social, and spiritual aspects of a fuller Christian/human
concept of the patient’s well-being, medical indications advocates adopt a
policy in which a more restrictive and physicalist notion tends to dominate
one’s best interest, particularly in the case of "non-dying"
patients" (p.69).
"A
new-born’s best interest, which should be the primary focus of what is
ethically indicated, is and rightly should be wider than medical feasibility.
What is physiologically beneficial and, in that sense, "medically
indicated" constitutes only phase one of a multi-layered ethical process,
regardless of a patient’s competence or non-competence. Reduction of ethics to
physiology is clearer, seemingly safer, and certainly less prone to quality of
life abuses, but ultimately inadequate to the "human" ethical
task" (p.70).
A
means-related approach to ordinary/extraordinary means of sustaining life and
the effects of those means on a given patient has been evolving in the Catholic
Church for over four hundred years now. It can be summarised in five
fundamental principles.
1.
Every human being has inherent worth (sanctity), regardless of personal
potential or handicaps.
2.
The inalienable right to life, which involves both the positive prima facie
obligation to preserve and sustain human life as well as the corresponding
negative prohibition against directly intended killing or assault (of the
innocent).
3.
The principle of Stewardship, by which life is seen as a divine gift, which
imposes on its recipient, and his/her caretakers duties related to its
prolongation and enhancement.
4.
The distinction between direct and indirect, with regard to both deed and
intention, is posited as a morally significant element in differentiating moral
from immoral decisions that result in death. From this distinction emerges the
absolute prohibition of all direct killing of innocent life, while allowing
some decisions for non-treatment, which might indirectly, though
unintentionally, contribute to a shortened lifespan.
5.
The principle of Totality, which can be explained in one of two life-respecting
ways. In the more restricted sense, one’s bodily organs find their finality in
the "totality" of one’s physiological well-being and, therefore, may
be subordinated to one’s physiological best interest by direct or indirect
means. Somewhat analogously, one’s biological life can be seen as having its
ultimate finality in the "totality" of the patient as a
biological-psychological-social-spiritual person. While one may never negate
one’s biological life component as one might a diseased organ, one may
"subordinate" it indirectly by deeds and intentions focused on one’s
holistic well-being or best interest (pp.93-94).
On
Nov.24, 1957, addressing an International Congress of Anaesthesiologists, Pope
Pius XII while avoiding the question of what actually constitutes medical death
as beyond the Church’s competence, dealt with questions surrounding obligations
to resuscitate or to prolong life via artificial respirators. In two brief
paragraphs he summarised the key components of the ordinary/extraordinary means
distinction as it had been developed since Vitoria.
"Natural
reason and Christian morals say that man (and whoever is entrusted with taking
care of his fellowman) has the right and the duty in the case of serious
illness to take the necessary treatment for the preservation of life and
health... But normally one is held to use only ordinary means -according to the
circumstances of persons, places, times and culture- that is to say, means that
do not involve any grave burden for oneself or another. A more strict
obligation would be too burdensome for most men and would render the attainment
of the higher, more important good too difficult. Life, health, and all temporal
activities are in fact subordinated to spiritual ends. On the other hand, one
is not forbidden to take more than the strictly necessary steps to preserve
life and health, as long as he does not fail in some more serious duty".
"In
the past moralists replied that one is never obliged to use extraordinary
means. This reply, which as a principle still holds good, is perhaps less clear
today by reason of the imprecision of the term and the rapid progress made in
the treatment of sickness. Thus some people prefer to speak of
"proportionate" and "disproportionate" means... In any
case, it will be possible to make a correct judgement as to the means by
studying the type of treatment to be used, its degree of complexity or risk,
its cost and the possibility of using it, and comparing these elements with the
result that can be expected, taking into account the state of the sick person
and his or her physical and moral resources" (CDF, Declaration on
Euthanasia, June 1980).
CRITIQUE
a.
Critique of method
A
sanctity of life versus quality of life scenario is a methodological
strawperson because the ordinary/extraordinary means approach acknowledges some
quality of life dimensions in judging the reasonableness or excessive nature of
a patient’s burden yet without computing it by a mere consequentialist calculus
or a pure utilitarianism. The modern approach interprets "means" in a
very broad context to include total well being in its biological,
psychological, social and spiritual aspects.
"Thus
a proposed course of treatment which indeed could save a life (e.g. surgery on
a duodenal atresia) or would prolong life indefinitely (e.g.
respirator-assisted breathing) is not "ordinary" or
"extraordinary save in the circumstantial context of a given patient"
(pp.131-132).
"The
ordinary/extraordinary tradition, at its best, allows patients to take into
account one’s pre-procedural state -dying, severe retardation,
myelomeningocele, deafness, cancer, quadraplegia- in determining whether a
means will cause an added burden, tipping the scales from tragic but tolerable
to excessive, thus making the proposed procedure optional due to the patient’s
extraordinary projected state post-treatment. For example, the loss of eyesight
through some life-sustaining brain surgery would not usually be considered an
intolerable burden for an otherwise healthy patient. However, if the patient is
already deaf, mute, and quadriplegic, then the burden of these other
pre-surgical factors are not and ought not to be excluded from the determination
of how burdensome sightless life will be for this specific patient. The
patient’s unique situation is always an essential component in determining the
morality of use or nonuse. Even if a given means will indeed cure the disease
or save the organ, the patient is not reducible to his disease or her organ.
One of the beauties of the ordinary/extraordinary means tradition has been that
it is patient-oriented, not diseasecentred" (pp. 132-133).
Sparks
concludes that "as a normative method or a prescriptive process for
practical application it is inadequate -vague and ambiguous in terms of
language and too bound to "means causation" to allow for the quality
of life judgements necessary in tragic cases of excessive burden or hopeless
life-prolongation unrelated to means. Determinations about means qua means,
such as scarcity, usualness, and generic usefulness, have been indiscriminately
intermingled with determination not necessarily related to means, such as a
patient’s qualitative judgement of "reasonable" benefit or
"excessive" burden. Incorporating the relative elements of a
patient’s prognosis and circumstances and subjective interpretations into the
equation and then declaring the means as "ordinary" or
"extraordinary" gives a potentially misleading impression of
objectivity and means-centredness" (pp.139-140).
The
method which focuses on the projected quality of the patient’s life has a
strong element of balance computing and it rests on four fundamental
presuppositions:
1.
The inherent value of every embodied life, with a prima facie mandate to
sustain and prolong life accordingly.
2.
The Principle of Totality, whereby one’s organs and bodily life are subservient
to the total well-being of the person as a multidimensional (physiological,
psychological, social and spiritual) whole.
3
A primary, quasi-exclusive focus on the patient’s best interest in biomedical
decision making (the only exception being those cases in which the fainted of
societal resources necessitates limitations on a patient’s access to any and
all treatment).
4.
A commitment to alleviating pain and suffering within the context of fostering
one’s holistic well-being.
Each
new-born is inherently a person and therefore has the right to have his/her
life protected and developmental potential fostered... At the same time,
adoption of the Principle of Totality, holistically interpreted, nuances the
above prima facie presumption toward treatment... by subordinating the mandate
to prolong life to concern for one’s psychological, social and eternal well-being...
Burden-to-benefit determinations are holistically viewed, with "sheer
life" rightly yielding to determinations concerning "good life"
and even these being subordinate to one’s interest in "eternal life"
(pp.192-193).
Sparks
lauds McCormick et al for "opening up the ordinary/extraordinary tradition
with regard to non-treatment decisions and for declaring such decisions
fundamentally and primarily to be quality of life determinations. The primary
advantage of a quality of life schema is that it puts the emphasis squarely on
the kind of life the patient lives, or can live, rather than implying that the
focus is dependent on means in any essential sense" (p.1 94).
When
it comes to making particular case decisions this method’s criteria are vague,
relative and consensus based. For example in May 1974 at Sonoma, California, an
interdisciplinary conference was held on Neonatal Intensive Care. The twenty
participants approached the common topic with their various backgrounds and
expertise -paediatrics, nursing, economics, social welfare, psychology, law,
philosophy and theology. The consensus document in addition to affirming the
inherent moral worth of every infant and the various stewardship
responsibilities of parents, physicians and the State for the well-being of the
child concluded that life-saving or sustaining efforts should be considered
harmful to the infant:
(1)
"who cannot survive infancy", a synonym for infants "already in
a dying state" and born with irreparable lesions incompatible with life.
(2)
"who will live in intractable pain" and so attempts to alleviate
pain, even those which indirectly hasten death, are judged in the patient’s
best interest.
(3)
"who cannot participate even minimally in human experience", that is,
"that the infant has some inherent capacity to respond affectively and
cognitively to human attention and to develop towards initiation of
communication with others".
This
language is akin to McCormick et al when they speak of the vague term
relational potential which refers to the embodied ability of a given patient to
ingest sensory input.
It
is also important not to make the preservation of the infant’s life depend on
the personalities and emotional or financial capacities of the parents alone.
Parents’ selfishness, moral weakness and materialistic outlook should not be
the basis for a decision of the infant’s quality of life. "No one should
be allowed to die simply because these parents are not up to the task"
(Paris and McCormick).
Another
common phrase is ‘‘meaningful life" used to describe "freedom from
crippling capacities" and the ability to achieve some "measure of
independence". Some proponents of this method suggest Joseph Fletcher’s
"indicators for humanhood" might be a useful guide for the potential
functions necessary to declare the quality of an infant’s life meaningful and
worth prolonging. This list includes some minimum mental awareness, an I.Q. of
at least 40 on a standard Stanford-Binet test, a sense of time, curiosity and
relationality, all centred around neocortical function.
The
method based on a socially-weighted benefit/burden calculus is really a form of
social utilitarianism which can over-ride a patient’s self-interest as the
ultimately determining factor as happens, for example, in triage medicine.
Proponents
like Singer advocate "active infanticide, as the most humane and least
costly solution to the cases of unwanted handicapped new-borns. Direct,
painless euthanasia frequently takes into account both the infant’s subpersonal
claim as a sentient being not to be pained unnecessarily as well as the actual
rights of the parents and society not to be burdened with an unwanted,
unproductive human being. The poorer the prognosis for a life of
"meaningful" quality for self and to others, the more reasonable the
infanticide option becomes. As Singer states it, "killing a defective
infant is not morally equivalent to killing a person. Very often it is not
wrong at all" (p.242).
Proponents
of this method variously try to define person in terms of self-consciousness
and other mental abilities and by certain physiological functions. It is a
functional definition of person. Englehardt makes a person a social construct
and decides on treatment in an purely utilitarian manner as to what their value
to society would be, for example, whether they would have rational potential or
the cost of cure and treatment would be prohibitively high to family or
society.
Fletcher’s
situation ethics is quite influential among these proponents which includes
choosing what is most "useful" for the most people in Mill’s terms.
The birth of a Down’s syndrome baby would be regarded as a "monstrous
accident" and an optional candidate for infanticide if the parents so
wish. Here it is judged a greater injustice to waste resources on this type of
idiot when they could be better invested in the life of a more normal child.
"For Fletcher active infanticide may be likened to "post-natal
abortion", just as he once called abortion "foetal euthanasia".
If one may terminate the pregnancy of an unwanted foetus either because of a
poor pre-natal diagnosis for the child-to-be or "simply because the
patient (the mother) is strongly opposed to having a baby", then neonatal
euthanasia is equally valid for similar reasons" (p.252).
b.
Critique a composite of inherent, functional and social components. Their
definition declares the person a subject and not an object. This subjectivity
is the source of rights. There is no solitary sense For these people person is
a slippery notion formed by of person that can be said to be its "whole
sense". Here functional abilities and social value criteria can condone a
discriminatory caste system making some unworthy of care.
Parents
have no right to a normal or perfect child. A grotesque disfigurement can often
wreak havoc on parents’ naturally benevolent attitude of stewardship. Here is
where potential discrimination looms largest and where a patient-centred ethic
would serve as a buffer zone against selfish and unjust bias. A socially
weighted calculus tends to undervalue the patient particularly when considered
"substandard" and not competent to defend his/her own interests.
c.
Critique of book as a whole
The
author himself recommends "a non-treatment approach hovering between that
espoused by the "more restrictive" and the "broader"
interpreters of the projected quality of the patient’s life standard... it
allows one to incorporate functional potential and social burden into
decisions. Viewing each handicapped new-born as a multi-faceted rights-bearing
person, parents and physicians can factor familial burden and societal
limitations into a benefit/burden calculus from the patient’s perspective"
(p.278).
Despite
this desirable patient centred bias his position is open to the weakness
inherent in all consequentialist moral judgements. This is shown in particular
when he approves, albeit, by rare exception that there is the legitimate
possibility for the direct killing of the new-born (p.297). He tends to let
quality of life arguments prevail over means which merely sustain metabolic
functions (p.140). The influence of Richard McCormick et al is clearly in
evidence here (p.194).
Despite
this caveat the author has accomplished a veritable tour de force in his
admirable survey of the contemporary medical and ethical scene. He did not,
however, have the benefit of the contributions subsequently made in 1995 with
the publication of both "Evangelium Vitae" and the Charter for Health
Care Workers.
A
few relevant points from these documents will be helpful to consider and
extrapolating them, if necessary, to the case of the handicapped new-born. For
example, EV n.63 praises those married couples who "with great anguish and
suffering, willingly accept gravely handicapped children". In n.64 it says
that materialistic and secularist judgements about what is
"meaningful" in regard to human life is one of the more alarming
results of the "culture of death" which is advancing above all in
prosperous societies.
"For
a correct moral judgement on euthanasia, in the first place a clear definition
is required. Euthanasia in the strict sense is understood to be an action or
omission which of itself and by intention causes death, with the purpose of
eliminating all suffering. Euthanasia’s terms of reference, therefore, are to
be found in the intention of the will and in the methods used.
"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 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 (cf.
CHCW n.119-121 and where n.120 speaks of no undue withholding of food and liquids)...
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... I confirm that euthanasia is a grave violation of the law
of God, since it is the deliberate and morally unacceptable killing of a human
person... Depending on the circumstances, this practice involves the malice
proper to suicide or murder" (n.65).
All
the above considerations help to answer effectively the original question posed
by the book: When is the non-treatment of the handicapped new-born euthanasia
and on what moral grounds is this non-treatment legitimate?
D.C. (1997)
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