—_ CHAPTER 5 Pediatric and Obstetri Ethics ane were persons who hat presumed to have the capacity to form and express preferences il and fetuses are the concepts explained in the earlier chapters. The numbering 9) is the reader back tothe corresponding sections inthe ral considerations in Chapter 1, Medical Indications number designates the sequence of paragraphs i ths Th chapter. Finally, sometimes a paremthetic reference wilapp* this eites the previous discusion that is pantculary pertier ‘Thos, 4.3) designates the diseussion of Orders Net To es the geter Resuseitate (DNR) for children and infants and ci discussion ofthis subject under Medical Indications 161nd wer CLINICAL ETHICS Note, In the field of obstetrics and reprod presence of the fetus makes the ai peculiarly complex. We suggest adapted to these problem specific to these spe practitioners. MEDICAL INDICATIONS. ‘The description and resol and obstetsies proceeds In gens are the same as those of all physicians: to hen’ to refrain from harm. The goals of medi same, whether the patient is adult © restoration of health, relief of symptoms, function, and saving and prolonging endan However, the exereise of these respon: @) The paticn! guardians whose nioral an absolute. "ence fo The welfare of the patient may be influenced a far a the patient may Bave Situation insofe ccocs are equally reaponsibe.T ens may vent ‘not impossi ‘erences is fraught with uncertain PEDIATRIC AND OBSTETRIC EDUC, 16x population of the future. ‘Thus, policies their case pact far beyond the may be held toa more stringent duty an independent judgment of what course would be best interest and to test and even challenge proxy aggalnst this standard. Baby Doc Rules In 1985, the U.S, Congress passed amendments to “The Child in legal standards for clinical decisions eegarding. the care of the newborn infant. Observance of these standards are tor protective agencies.” We shall refer owing pages. We shal: comment on hese Jegal rules for ethical decision makiig. ‘shoul be sought from local legal counsel, ire generally applicable 40 the ‘encountered in pediatrics and obstetrics. Among sort of problem commonly appears, ‘conjunction of a potentially curable or manageable "th a constitutional, untreatable disorder, possibly with mental cctardation. amples. Acwbom b noted hav he tiga of Den Pea ndiohme tcorecbie stan! anomaly sah Sere css or tacheoesaphogen tu 4 preset So nas dagnosedy states ag = Sa ee ete chcreeepal in peat: hee nich Shhcrotcathe ese doer hs ce ae congel or gence soracr wal <5 se ete, The procs costed n>wt CLINICAL ETHIC, 4 Desislons Lo Forega Intervention as. tpelicacious determination in children should be cinieal issues.‘ Naturally, the greatest Slat be extended to parcets whore cl paracularly important to make clear that deatt Pstinet from persistent vegetative condition: the term “br death” confuses the two and should be avoided. ue 6 Futility Incertain cases, medical intervention is not indicated because it promises no benefit. Case I. An anenceph prenatal care. Large po forebrain and much of the brain stem is infant is gasping at birth. infant is born toa mother who had 10 cranium are absent, and the However, the ivcred by spontaneous abortion at 23 fg, and is asphyrciated at Pes Case. A fetus weeks of gestation, weighing 420 absent from hame for about 2 ay pone. Full resuscitative ey Pees ath ve ue breath wal eerebeal 2€ Case. A dyearold hours, is found at the bottom cffors restore heartbeat, but after Suppor, there is no evidence of sone though clectroencephalogeaphy indicates 0 Uvity. The child develops ba! | COMMENT: Reasonable rhere is some good reason, including simple cel the minor to request it, why pares tanding and consent, wns mentioned above. swever, the physician ‘eategory, but is capable of un clan may treat under the cond ‘case of the mature minor, should inquire, if possible, about the Fe: ‘son's unwillingness to commu es Should be taken, ifthe minor is willing, co attempt Feconcilision ‘to solve the problem ins cane ‘satisfactory mar dentiality should be maincaincs Physicians who honer the requests of 2t some theoretical legal peril. However, cure minors are at decisions can be covered 5 2. PEDIATRIC AND OBSTETRIC ETHICS 5 ‘A request for irreversible sterilization from a mature minor poses peculiar problems. There are statutory and regulatory Prohibitions against sterilization of minors in certain federal Programs and in many states. There is penl of 8 suit by parents and by the minor at a later date, There fs good reason to assume that even a mature minor cannot comprehend the implications of this procedure, A physician confronted with this request should explore the reasons behind the request and offer tess radical alternatives, Abortion ‘The ethics of abortion are, and probably will remain, a matter of intense debate. In medicine, the ethical tradition begins with the “Twill not give to a woman a pessary to cause appears to have tolerated abortion life or health of the mother. Abortion for other reasons, stich 36 family planaing, and so forth, least less Favored. Religious hich primarily concemed saving the beliefs, such 23 the absolute prohibition in Roman Catholic and ‘Orthodox faiths and the strict limitations in. Orthodox Juclaism, have always affected the ethical positions of physicians who. were adherents of those faiths. In the United States, the medical profession led the enactment of antiabortion legislation in the 1800s. In the last halcentury, onganized medicine has accepted the more tolerant view of abortion that permits physicians to perform it the request of a pregnant woman. The American ‘College of Obstetrics and Gynecology, for example, states, “The College recognizes that situations of conflict may arise between, pregnant woman's health interests and the welfare ofher fetus, Both legally and ethically, this conflict can lead to a justification: of induced abortion” (1975), Physicians are, of course, free 0 sefrain from performing abortions, and institutional policies should recognize this right,|*"* ‘Legal Considerations In its decision, Roo », Waste (1973) The United States Supreme ‘Court determined that women have a limited privacy right t0 abortion. States may not Iegilatc to restrict abortion ducing the fest crimester; may legislate to assure the health and safety of the woman during the second trimester andl may restrict abortion.onder toimprove the prognos! ‘one orsevet tant, perhaps, { fequires parental concent for Js of the remaining one 212 PEDIATRIC AND OBSTETRIC ETHICS. WT the birth of some or all of the septuplets would most probably result in poor outcomes for the survivors, abortion was recon. to twine was possible. COMMENT and COUNSEL In cases such as these, all op- -em to involve harm. The principle of the double effect, ‘Maternal-Fetal Conflict ‘A medical recommenditioa that is directed to the benefit of the fetus may be rejected by the mother, Cascl. A 24ycarold woman, pregnant with her first child, begins premature labor at 26 weeks. Tocolytic therapy is unsiac! ‘cessful. Fetal monltoring indicates that the fetus fs in distress. ‘woman adamantiy refuses, even after being fullyinfornted of the risks to the fetus, She insists that she wants a healthy baby, but docs not want it “cur out of her.” ‘Case IL A19,yearold mother af two presents for prenatal care “smoker and drinker. Her second child f thought to be affected “pith fetal alcohol syndrome. She Iscounseledeo op draking aod2A and low risk te the mother can prevent serious infant who will be born live. In such a case, the sultation, might considerjudicial the judge to determine the legal statusof any .d treatment. Personhood Behind many of the above issues lies the concept of ‘The term “person” has important ethical and egal However, its meaning and its proper application a intense debate, In Anglo-American commen Os traditionally was °a human being live! ee of legal rights and protections. The ph from the designation of any P! < oe han Being setvally capable of logical ought nd vel con munication. A few philosophers claim that infacs ough te considered persons because of theirlack ofthese ter chara PEDIATRIC AND OBSTETRIC ETHICS 79 {stics, The majority of philosophers seem to maintain that person hood somehow attaches to the potential for rationality and parsicx pation in the human community, but differ radically on the point at which that potertlal should be designated. Por practical pur poses, the Supreme Court's choice in its 1973 decision, Roe ¢. Wade, of fetal viability, the physical capacity forlife independent of matemal corporcal support, 4s the point for designating mora personhood seca reasonable and commands broad, although hardly universal, consensus." QUALITY OF LIFE The general meaning of quality of life, and cautions about its: relevance to clinical decisions, are noted in Chapter 3. There are some special ssues in pediatrics that urge even greater caution, ‘The prefatory remarks to the Federal Regulations war that “mieidical treatment decisions are not to be made on the basis of | subjective opinions about the future “quality of lie"ofa retarded or disabled person" (Federal Regulations, Ac 14880). This war | lng is somewhat exaggerated. Indeed, the regulations them- selves legitimate, in a covert way, some reference to quality of life by allowing permanent coma and the inhumanity of the treatment to serve as justifications for refraining from interven: | tion. However, the waming docs remind us of the danger of diserimination that is fatal for the Individuals and unfair to cate gories of individuals who do not meet certain social norms anid standards often irrelevant to.their medical needs" Features of Quality of Life judgments for Infants and Children portant differences distinguish thesc judgments from {hose in adult care, First, the adult offen can express preferences abour future states of life and health. Second, when an adult is ineapable of expressing preferences, the history of that person's preferences and style of life often allows others fo estimate how that person would value and adapt to Future states. In pediatrics, the life shose quality is being assessed is almost entiely in the future and ne expression of preferences is ayailabie Case I, A.12yearold boy with Dawn syndrome has congenl tal heact lesion. No surgical intervention was recommended until132 gest interest Standard | }) In 5.24, decisions made parents, were said co be limited to judgme! interests of the patient. Th for the patient by proxies, such 33 eee eagments expressing the Best is notion, drawn from legal parlanes, oun ANO DESTEIIGTHICE a ‘Of present desires, the opportunites for fuwure satisfaction, and the fos of developing o pining he caps ore Stermin, Cast T. A fullterm infaat is noted at Binh to have 2 lange thorocolurabar myelomeningocele, which is leaking cerebrospt- COMMENT) In Case 1, the prognosis includes severe defor mity of the spine and lower limbs, incontinence of bowel and rE= } c (PEOIATRIC AND OBSTETRIC ETHICS 183 4 the judgment that life of unceritiog pain, diebiley, and! eae egy human commanication 38 objectively be consis a eemebcarble: A life that no person would choore if the mc given, No mor] obligation is imposed on anyone to wie perpetuation of such a life in the abscnce of request from tbe one who lives it? 533 Euthanasia (3.8) Granting the possibilty at'some decisions co withhold 1-95 S54 CONTEXTUAL FEATURES deserve particular notice: the role of the family of the chilé-pa- tient and the impact on society of certain decisions and policies about eare of children 44 ily In5.2, the nature and scope of parental authority was discussed. are the primary decision makers and the sick child's ‘welfare must be the focus of their responsibilty. Howerer, the pparcots of anill child are often parenss ofther children and have Fiultiple responsibilities. Dections about treatment may have ‘major implications for their other children and for the socialand n of the framers), ever the languag financlal stability of the family. Often, parents will devote almost ‘can be interpreted to support this lifes ‘exclusive attention (o the sick child, but on occasion, they ask datory when sus proven gle Meneahet whether le futile in terms of ren ‘at itself under such circumstances : Be ipo en treat Regulations, AU 14885), We are” Case TL. Same as Case 1in$.3.2. The parents ofthis infant with oe le ne! Ae ot humanencss is 38 igerfous a8 an myelodysplasia have three other children, 12, 8, and # sean of respeness may Tead (© age. The Bycaroldalsohas a neural tube defect offesser seventy ‘bligatfon to save an endangered life. Hiageney. 543 Costs of Care “The general argument about costs in Chapter 4 5 relevant to the: wee Ber infants and children. However, one frequently Dear 544 Organ TransplantationIt is not research on the fet fhe adult patient. Federal fund 1¢ is prohibitcd duc to the association with abort ¢ political concerns, a federal committee con sblems are not sufficient to P' =h no direct connection exists between tl he tissue, (2) maternal consent Js obtained, and (3) 4 val has becn approved.“*“° ktren as rescarch subjects has been safe Sabjects of Biomedical and Behe Sions of that commission are now tions” In addition to the ject. (©) Any research proposal that involves more than minimal fisks and offers no personal benefit co the subject ecquires special review In order (o adjpdicatc its vital Importance for the health of children. Institutional review beards, Which MUst ap- prove all research, can advise cesearchers about details of the requicements for ethical research involving children (@) The informed consent of parents of guardians, and their close eee aan na see ‘sent of the child should also be sought when they are at that ‘maturity where the eatur ol he procedire side concept ofan invitation to help others voluntarily can be understood. A. child's dissent should be respected unless the research proce dure is directly assocted with » themspy potential tar exnaot bbe provided oveside research modalities | (© Rescarchon the human fetus should be limited to activitics | ‘directed to the health of the fetus and should be of enly minimal | risk. Public Health ‘Vaccination is a major public health sieasure and is important 10 the health of individual children. The long efTor by pediatricians to Institute mandatory of universal immunization is chreateaed by changes in public health Ixer to permit persons whose rel ‘gious beliefs oppote such procedures to refuse vaccination and ‘by the apprebension of parents that vaccination may have risks that could lead to sesious and possibly uncompensated hata (oF their children. While this is distressing, the bastc principle must be recalled: vaccination may put a child at small risk of harm £0