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ALL too often in our society the prenatal diagnosis of an infant with a terminal illness is regarded as an indication for abortion. In this presentation we will consider a Roman Catholic alternative.
A
CLINICAL
CASE
AN obstetrician asked whether it would be permissible to induce labor in a patient carrying a child with a lethal illness.
THE patient was 24 years old and had previously delivered two healthy infants. She was in her 28th week of pregnancy which had been normal up to that point; however an ultrasound now revealed numerous bony abnormalities of the fetus. Further tests and consultations with pediatricians and neonatologists yielded a diagnosis of severe thanatophoric dysplasia of the fetus, an invariably-lethal condition. In addition, the mother was developing polyhydramnios, a potentially-dangerous increase in amniotic fluid caused by the fetus’ inability to swallow properly. The obstetrician recommended induction of labor, since polyhydramnios can be associated with other serious complications of pregnancy. The obstetrician was uncertain, however, whether such an induction of labor would be permitted at St. Francis’ Hospital “because some might misunderstand it as a kind of abortion”. He asked the neonatal team at St. Francis to discuss the issue with the spiritual care staff and with a bioethicist.
THE spiritual care team, representatives of the bioethics committee, and an ethicist met with the neonatal team to discuss this question. The neonatologist who had consulted with the obstetrician and arranged the consultation explained that in his opinion, even if the pregnancy were carried to full term there was no therapy that could be offered the child that would result in the child living more than a few hours, or at most a few days; indeed, there was a significant probability that the child would not be born alive.
THE cause of death would probably be immaturity of the lungs, which would remain immature even if the pregnancy were allowed to progress to full term. The neonatologist had previously cared for several newborns with this condition, and he strongly advised against attempting any invasive medical treatment after birth (such as CPR or intubation), which would almost certainly be ineffective, and at best could serve only to prolong the dying process by a few hours. In his opinion, induction of labor would not alter the child’s prognosis in any way.
IT was further clarified that:
1) the goal of the induction of labor was solely to treat the mother’s hydramnios.
2) As described above, the premature induction of labor would not alter the child’s prognosis.
3) the mother and father wished to care for the child after delivery as much as possible, but;
4) since no medical therapy would effectively treat or significantly extend the child’s life, they preferred that no invasive therapies be employed. Insofar as possible, they wished to care for the child in the mother’s post-partum room.
5) Social services and spiritual-care staff agreed to meet with the parents before induction of labor to make sure the parents received appropriate psychological assistance, and to insure that a chaplain would be available to baptize the infant.
1.
WHAT
IS
PERINATAL
HOSPICE?
THE
goal of perinatal Hospice (or Perinatal Palliative Care) is to support
parents who choose to continue a pregnancy when the infant they are carrying
is discovered to be suffering from a terminal illness. The following
two citations and links to websites illustrate the efforts that are
presently being made:
THE family experience with these pregnancies is analogous to that of families with a terminally ill child and their management is well served with a coherent end-of-life philosophy. The concept of perinatal hospice has been proposed as a comprehensive structured approach for the care of these families.
American Association of Pro-Life Obstetricians and Gynecologists
[LOCAL]
(Website includes ability to search according to state)
[..] IN a beautiful and practical response, some pioneering hospitals and hospices are starting perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth. A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby's family. Even in areas without a formal program, parents can create a loving experience for themselves and their baby, and health professionals and family and friends can offer support in the spirit of hospice
[LOCAL]
2.
HOW
DO
CATHOLICS
CARE
for THE
DYING?
PROVIDING spiritual, psychological, and physical care and comfort to those with terminal illnesses has always been a part of Roman Catholic practice. There are specific sacraments and blessings intended to strengthen the dying person and to prepare them for their journey into eternal life.
SINCE the early middle ages theologians have discussed issues pertaining to the kind of medical care that should be considered morally obligatory for those who are dying. Their answer to this question has been remarkably consistent over the centuries, and has been clearly stated in three recent church documents:
1. the 1980 Declaration on Euthanasia;
2. the 1994 Catechism of the Catholic Church;
3. and the 2004 Address on Palliative Care
by the late Pope John Paul II.
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Giotto, The Death of St. Francis |
Sacred Congregation for the Doctrine of the Faith (Declaratio de Euthanasia deque analgesicorum remediorum usu therapeutico recte ac proporzionate servando) AAS 72, 1 (1980) 542-552; DOCUMENTA 38 OR 27.6.1980, 1.4)
EVERYONE has the duty to care for his or he own health or to seek such care from others. Those whose task it is to care for the sick must do so conscientiously and administer the remedies that seem necessary or useful. |
Uniuscuiusque
officium est consulere valetudini suae et efficere ut sibi curationes
ministrentur. Ii autem quibus infirmorum cura concredita est, omni cum
diligentia operam suam praestare debent ac remedia
praebere, quae
necessaria vel utilia
videantur. |
However, is it necessary in all circumstances to have recourse to all possible remedies? |
Suntne igitur in
omnibus rerum adiunctis cuncta prorsus remedia experienda ? |
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 judgment as to the means by studying the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources. |
Haud multo ante moralis disciplinae cultores respondebant usum mediorum « extraordinariorum „ numquam praecipi posse. Huiusmodi responsio, quae, ut principium, semper valet, hodie fortasse minus perspicua apparet sive ob parum definitum dicendi modum, sive etiam ob celeres progressus, qui in re therapeutica facti sunt. Hinc est quod quibusdam potius placet loqui de mediis , proportionatis » et « non proportionatis ». Utcumque res se habet, recta mediorum aestimatio fieri poterit, si artis therapeuticae genus, eiusque difficultatum et periculorum gradus ac sumptus necessarii necnon possibilitas eodem utendi, cum effectibus, quos exspectare licet, comparentur, debita ratione habita tum status aegroti tum ipsius corporis et animi virium. |
In order to facilitate the application of these general principles, the following clarifications can be added: |
Quo facilius haec generalia principia ad rem deducantur, iuvare poterunt accuratiores explicationes, quae sequuntur |
- If there are no other sufficient remedies, it
is permitted, with the patient’s consent, to have recourse to the
means provided by the most advanced medical techniques, even if these
means are still at the experimental
stage and are not without a certain risk. By accepting them, the patient
can even show generosity in the service of humanity. |
- Si alia
remedia non suppetunt, licet, ex consensu aegroti, media adhibere, quae
novissima medicae artis inventa protulerunt, etiamsi haud satis adhuc
experimentis probata sint nec aliquo periculo careant. Aegrotus, qui ea
accipiat, poterit etiam exemplum generosi animi praebere in bonum generis
humani. |
- It is also permitted, with
the patient’s consent, to interrupt these means, where the results fall
short of expectations. But for such a decision to be made, account
will have to be taken of the reasonable wishes of the patient and the
patient’s family, as also of the advice of the doctors who are specially
competent in the matter. |
- Pariter licet
horum mediorum usum abrumpere, quotiescumque exitus spem in eis
repositam fallit. At in hoc capiendo consilio, ratio habeatur iusti
desiderii aegroti eiusque familiarium, nec non sententiae medicorum, qui
vere periti sint; |
The latter may in particular judge that the investment in
instruments and personnel is disproportionate to the results foreseen;
they may also judge that the techniques applied impose on the patient
strain or suffering out of proportion with the benefits which he or she
may gain from such techniques. |
hi profecto prae
ceteris aequam aestimationem facere poterunt, cum sumptus instrumentorum
et hominum in id impendendorum non respondet effectibus qui praevidentur,
et cum medicae artis adhibita subsidia imponunt aegroto dolores aut
incommoda graviora quam utilitates quae inde ei afferri possunt. |
- It is also permissible to make do with the normal means that medicine can offer. Therefore ONE CANNOT IMPOSE ON ANYONE the obligation to have recourse to a technique which is already in use but which . |
- Semper licet satis habere communia remedia, quae ars medica suppeditare potest. Quapropter nemini obligatio imponenda est genus curationis adhibendi quod, etsi in usu iam est, |
[1] carries a risk or [2] is burdensome. |
adhuc tamen non caret periculo vel nimis est onerosum. |
Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as |
Quae remedii recusatio comparanda non est cum suicidio verius habenda est vel |
[1] an acceptance of the human condition, or [2] a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or [3] a desire not to impose excessive expense on the family or the community. |
simplex acceptatio condicionis
humanae;
vel cura vitandi laboriosum rnedicae artis apparatum cui tamen par sperandorum effectuum utilitas non respondet; vel denique voluntas onus nimis grave familiaee aut communitati non imponendi. |
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- When inevitable death is imminent in spite of the means used, it is
permitted in conscience to take the decision to 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. In such circumstances the doctor has no reason to reproach
himself with failing to help the person in danger. |
- Imminente
morte, quae remediis adhibitis nullo modes impediri potest, licet ex
conscientia consilium inire curationibus renuntiandi, quae nonnisi
precariam et doloris plenam. vitae dilationem afferre valent, haud
intermissis tamen ordinariis curis, quae in similibus casibus aegroto
debentur. Tune, causa non est cur medicus animi angore
afficiatur, quasi alicui,. qui in periculo versaretur, auxilium negaverit. |
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The Resurrection Bellini, 1575. |
The Catechism of the
Catholic Church (1994) PART THREE:
“LIFE IN
CHRIST”; SECTION TWO; THE TEN COMMANDMENTS;
CHAPTER TWO;
“YOU SHALL LOVE YOUR NEIGHBOR AS YOURSELF”, Article 5, The Fifth Commandment
2278 Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected. |
2278 Cessatio a mediis medicinalibus, onerosis, periculosis, extraordinariis vel talibus quae cum effectibus obtentis proportionata non sunt, legitima esse potest. Haec est recusatio « saevitiae therapeuticae ». Hoc modo, non intenditur mortem inferre; accipitur non posse eam impedire. Decisiones suscipiendae sunt ab aegroto, si ad id competentiam habeat et capacitatem, secus autem ab illis qui ad id, secundum legem, habent iura, rationabilem aegroti voluntatem et legitimum commodum semper observantes. |
2279 Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable Palliative care is a special form of disinterested charity. As such it should be encouraged. |
2279 Etiamsi mors imminere consideretur, curae, quae ordinario personae aegrotae debentur, nequeunt legitime interrumpi. Analgesicorum medicamentorum usus ad moribundi dolores sublevandos, etiam cum periculo eius dies breviandi, potest esse dignitati humanae moraliter conformis, si mors neque ut finis neque ut medium est volita, sed solummodo praevisa et, tamquam inevitabilis, tolerata. Curae lenientes formam constituunt excellentem caritatis gratuitae. Hac ratione foveri debent. |
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Address by Pope John Paul II On the Occasion of the International Conference of the Pontifical Council for Pastoral Health Care
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4. TRUE compassion, on the contrary, encourages every reasonable effort for the patient’s recovery. At the same time, it helps draw the line when it is clear that no further treatment will serve this purpose. |
4. La vera compassione, al contrario, promuove ogni ragionevole sforzo per favorire la guarigione del paziente. Al tempo stesso essa aiuta a fermarsi quando nessuna azione risulta ormai utile a tale fine. |
The refusal of aggressive treatment is neither a rejection of the patient nor of his or her life. Indeed, the object of the decision on whether to begin or to continue a treatment has nothing to do with the value of the patient’s life, but rather with whether such medical intervention is beneficial for the patient. |
Il rifiuto dell’ accanimento terapeutico non è un rifiuto del paziente e della sua vita. Infatti, l’oggetto della deliberazione sull’opportunità di iniziare o continuare una pratica terapeutica non è il valore della vita del paziente, ma il valore dell’intervento medico sul paziente. |
The possible decision either not to start or to halt a treatment will be deemed ethically correct if the treatment is ineffective or obviously disproportionate to the aims of sustaining life or recovering health. Consequently, the decision to forego aggressive treatment is an expression of the respect that is due to the patient at every moment. |
L’eventuale decisione di non intraprendere o di interrompere una terapia sarà ritenuta eticamente corretta quando questa risulti inefficace o chiaramente sproporzionata ai fini del sostegno alla vita o del recupero della salute. Il rifiuto dell’accanimento terapeutico, pertanto, è espressione del rispetto che in ogni istante si deve al paziente. |
It is precisely this sense of loving respect that will help support patients to the very end. Every possible act and attention should be brought into play to lessen their suffering in the last part of their earthly existence and to encourage a life as peaceful as possible, which will dispose them to prepare their souls for the encounter with the heavenly Father. |
Sarà proprio questo senso di amorevole rispetto che aiuterà ad accompagnare il paziente fino alla fine, ponendo in atto tutte le azioni e attenzioni possibili per diminuirne le sofferenze e favorirne nell’ultima parte dell’esistenza terrena un vissuto per quanto possibile sereno, che ne disponga l’animo all’incontro con il Padre celeste. |
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5. PARTICULARLY in the stages of illness when proportionate and effective treatment is no longer possible, while it is necessary to avoid every kind of persistent or aggressive treatment, methods of “palliative care” are required. As the Encyclical Evangelium Vitae affirms, they must “seek to make suffering more bearable in the final stages of illness and to ensure that the patient is supported and accompanied in his or her ordeal” (n. 65). |
5. Soprattutto nella fase della malattia, in cui non è più possibile praticare terapie proporzionate ed efficaci, mentre, si impone l’obbligo di evitare ogni forma di ostinazione o accanimento terapeutico, si colloca la necessità delle “cure palliative” che, come afferma l’Enciclica Evangelium vitae, sono “destinate a rendere più sopportabile la sofferenza nella fase finale della malattia e di assicurare al tempo stesso al paziente un adeguato accompagnamento” (n. 65). |
In fact, palliative care aims, especially in the case of patients with terminal diseases, at alleviating a vast gamut of symptoms of physical, psychological and mental suffering; hence, it requires the intervention of a team of specialists with medical, psychological and religious qualifications who will work together to support the patient in critical stages. |
Le cure palliative, infatti, mirano a lenire, specialmente nel paziente terminale, una vasta gamma di sintomi di sofferenza di ordine fisico, psichico e mentale, e richiedono perciò l’intervento di un’équipe di specialisti con competenza medica, psicologica e religiosa, tra loro affiatati per sostenere il paziente nella fase critica. |
[...] To provide this help in its different forms, it is necessary to encourage the training of specialists in palliative care at special teaching institutes where psychologists and health-care workers can also be involved. |
Ai fini di realizzare questo articolato aiuto occorre incoraggiare la formazione di specialisti delle cure palliative, in particolare strutture didattiche alle quali possono essere interessati anche psicologi e operatori della pastorale. |
3. WHAT UNIQUE ISSUES DOES PERINATAL HOSPICE RAISE?
3.
WHAT
UNIQUE
ISSUES
DOES
PERINATAL
HOSPICE
RAISE?
THE moral issues involved in perinatal hospice are unique in that, until the time of delivery, the dying child and the grieving mother share the same body. Infants with lethal diseases are often unable to swallow normally, and sometimes there are also abnormalities of the kidneys and other organs. This can frequently give rise to hydramnios, an excessive and increasing quantity of amniotic fluid that can cause additional complications for both infant and mother.
INDUCTION of labor is sometimes recommended for hydramnios, and the question arises of the effect of premature delivery on the infant.
IT is essential to ask the question whether induction of labor will significantly alter the prognosis for the infant.
4. HOW DOES THE CATHOLIC CHURCH RESPOND to THESE ISSUES?
4.
HOW
DOES
THE CATHOLIC
CHURCH
RESPOND
to THESE
PARTICULAR ISSUES?
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Physician & Patient, Medieval MS. Illum. |
Issued by NCCB/USCC, June 15, 2001. Copyright © 2001, United States Conference of Catholic Bishops
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PART
FOUR: |
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45. Abortion (that is, the directly intended termination of pregnancy before viability or the directly intended destruction of a viable fetus) is never permitted. Every procedure whose sole immediate effect is the termination of pregnancy before viability is an abortion, which, in its moral context, includes the interval between conception and implantation of the embryo. Catholic health care institutions are not to provide abortion services, even based upon the principle of material cooperation. In this context, Catholic health care institutions need to be concerned about the danger of scandal in any association with abortion providers.
47. Operations, treatments, and medications that have as their direct purpose the cure of a proportionately serious pathological condition of a pregnant woman are permitted when they cannot be safely postponed until the unborn child is viable, even if they will result in the death of the unborn child.
48. In case of extrauterine pregnancy, no intervention is morally licit which constitutes a direct abortion.31
49. For a proportionate reason, labor may be induced after the fetus is viable.
50. Prenatal diagnosis is permitted when the procedure does not threaten the life or physical integrity of the unborn child or the mother and does not subject them to disproportionate risks; when the diagnosis can provide information to guide preventative care for the mother or pre- or postnatal care for the child; and when the parents, or at least the mother, give free and informed consent. Prenatal diagnosis is not permitted when undertaken with the intention of aborting an unborn child with a serious defect.32
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PART FIVE: Issues in Care for the Dying |
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INTRODUCTION
[...] The task of medicine is to care even when it cannot cure. Physicians and their patients must evaluate the use of the technology at their disposal. Reflection on the innate dignity of human life in all its dimensions and on the purpose of medical care is indispensable for formulating a true moral judgment about the use of technology to maintain life. The use of life-sustaining technology is judged in light of the Christian meaning of life, suffering, and death. Only in this way are two extremes avoided: on the one hand, an insistence on useless or burdensome technology even when a patient may legitimately wish to forgo it and, on the other hand, the withdrawal of technology with the intention of causing death.37
Some state Catholic conferences, individual bishops, and the USCCB Committee on Pro-Life Activities (formerly an NCCB committee) have addressed the moral issues concerning medically assisted hydration and nutrition. The bishops are guided by the Church’s teaching forbidding euthanasia, which is “an action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated.”38 These statements agree that hydration and nutrition are not morally obligatory either when they bring no comfort to a person who is imminently dying or when they cannot be assimilated by a person’s body. The USCCB Committee on Pro-Life Activities’ report, in addition, points out the necessary distinctions between questions already resolved by the magisterium and those requiring further reflection, as, for example, the morality of withdrawing medically assisted hydration and nutrition from a person who is in the condition that is recognized by physicians as the “persistent vegetative state” (PVS).39
5. DIRECTIVES 55-66: Issues in Care for the Dying |
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55. Catholic health care institutions offering care to persons in danger of death from illness, accident, advanced age, or similar condition should provide them with appropriate opportunities to prepare for death. Persons in danger of death should be provided with whatever information is necessary to help them understand their condition and have the opportunity to discuss their condition with their family members and care providers. They should also be offered the appropriate medical information that would make it possible to address the morally legitimate choices available to them. They should be provided the spiritual support as well as the opportunity to receive the sacraments in order to prepare well for death.
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[:]
[1] offer a reasonable hope of benefit and
[2] do not entail an excessive burden
[3] or impose excessive expense on the family or the community.40
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 of benefit or entail an excessive burden, or impose excessive expense on the family or the community.41
5.
MORAL
THEOLOGY
In Roman Catholic Theology, not only the intended consequence of an actions must be considered, but also:
The [multiple] consequences of the Act (including the effect on the Agent)
It has been clearly recognized in Roman Catholic Theology that every act has multiple consequences, but that not all the consequences are intended. This is the basis of the so-called PRINCIPLE of DOUBLE EFFECT
From the Catholic Ethical and Religious Directives (above)
49. For a proportionate reason, labor may be induced after the fetus is viable.
In the case we have presented the proportionate reason for induction of labor is treatment of the mother's hydramnios.
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OUR assessment was that in this particular circumstance the requirements of the Principle of Double Effect were fulfilled. The action (induction of labor) is morally neutral and beneficial to the mother without harming (changing the prognosis of) the child. . If it had been possible or safe for the mother to carry the child to term she would have done so. The intention of the parents was to deliver the child in as normal a way as possible and to care for the child as best they could.
WE concluded that the induction of labor could take place at St. Francis, and explained the reasons for this to all the medical staff concerned, especially the labor-and-delivery and post-partum staff. All were comfortable with the decision. The induction was performed without complications and the child lived for two hours after delivery, cared for by the mother.
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This Webpage was created for a workshop held at Saint Andrew's Abbey, Valyermo, California in 1990