ETHICAL, LEGAL, AND SOCIAL ASPECTS OF MEDICAL CARE

Session I: Introduction/Infants

August 25, 1998

Prioritized Learning Objectives:

1. To learn different approaches to ethical conflicts.

2. To gain familiarity with ethical reasoning.

3. To consider cultural and ethical relativity.

4. To consider issues raised when infants are born with severe handicaps.

5. To consider whether retarded citizens should be permitted to have sexual intercourse and to bear children.

6. To anticipate the kinds of problems which can arise in deciding whether or not an infant born with severe defects should be given maximal care.

7. To consider the different arguments which can be made when deciding how much to share with parents concerning your religious beliefs.

8. To gain familiarity with the arguments and feelings that can arise when deciding who among several adults or infants should have access to scarce resources (micro-allocation decisions).

Required Reading:

1. Beauchamp, TL, Childress, JF: Principles of Biomedical Ethics, Oxford Press, 4th Edition, 13-14, 85-88, 92-93, 217-219, 1994.

2. Botkin, JR: Delivery room decisions for tiny infants: An ethical analysis. The Journal of Clinical Ethics, pgs. 306-311, 1990.

Prioritized Recommended Reading on Reserve in the Library:

1. Kamen, A: Court Strikes Down "Baby Doe" Rules. The Washington Post A1, A8l.

   (A brief account of the Supreme Court's holding that the Federal Government cannot overrule parental decisions regarding newborns with severe handicaps).

2. Hauerwas, S: Learning Morality from Handicapped Children. The Hastings Center Report, pp. 45-46, Oct. 1980.

   (A review of two books that highlights possible differences in the reactions of parents and physicians to handicapped children).

3. Jolna, S: A Delicate Debate on Sexuality. The Washington Post A4, March 4, 1979.

   (A brief report of a proposal to allow retarded adults privacy so that they could have sexual intercourse and some reactions to it).

4. Raine, BA: Beyond Entitlement: Why Society Fails the Retarded. The Hastings Center Report pp. 45-46, Feb 1984.

   (A book review highlighting the need for society to do more for retarded individuals than is currently being done).

5. Pueschel and Murphy: Counseling Parents of Infants with Down's Syndrome. Postgraduate Medicine 58(7):90-95, 1975.

   (Some further guidelines on counseling.)

6. Duff, RS: Counseling Families and Deciding Care of Severely Defective Children: A Way of Coping with "Medical Vietnam". Pediatrics 67:315-320, 1981.

   (Discusses how to decide whether or not a newborn born with severe birth defects should be given maximal care. This is especially valuable since parents can now be part of that decision.)

7. Parental and Community Response to the Birth of a Down's Syndrome Child.

   (Anecdotal information based on one family's experience.)

8. Duff and Campbell: Moral and Ethical Dilemmas in the Special Care Nursery. NEJM 289 (17):890-894, 1973.

   (Some data on what choices were actually made a little over a decade ago.)

9. Anonymous: Non-treatment of Defective Newborn Babies. Lancet pp. 1123-24, Nov 24, 1979.

   (One British physician's rationale for allowing such a child to die. Note that he was unwilling to sign his name.)

10. Birth-Defect Dilemma: Students Given Taste. US Medicine p. 25, April 15, 1981.

    (A description of a talk given by Karen Metzler in this class a number of years ago. This is on videotape in case you wish to see it.)

11. Kamen, A: White House Asks Court to back "Baby Doe" Rule. The Washington Post A3

    (Background material to present Supreme Court decision.)

12. Murray, T: The Final Anticlimactic Rule on Baby Doe. Hastings Center Report pp. 5-9, June 1985.

    (An "interim" discussion of the problems which arose prior to the Supreme Court ruling just enacted.)

13. Will GF: For the Handicapped, Rights but no Welcome. Hastings Center Report pp. 5-8, June 1986.

    (A thoughtful article on the limitations of "rights" approaches in deciding what should be done concerning handicapped individuals.)

14. Prager, D: Md. Investigating Home for Retarded. The Washington Post Jan. 21, 1980.

    (An example of the difficulties providing adequate care for retarded citizens.)

15. Pellegrino ED: The Anatomy of Clinical-Ethical Judgments in Perinatology and Neonatology: A Substantive and Procedural Framework. Seminars in Perinatology 11:202-209, 1987.

    (An excellent brief overview of ethical theory and a fourth approach to ethical analysis which is much like the five step process I have provided you.)

INTRODUCTION TO SESSION I

August 25, 1998

In this first session, initially I shall present an overview of approaches to the ethical analysis of case dilemmas. Subsequently, the film, "Dreams and Dilemmas" will be shown. This film describes twins born with serious problems and the difficulties which arose regarding them. Drs. Randall and Hanson will then share with you family centered perspectives they have come to find important when decisions must be made involving infants with disabilities. Dr. Randall is a Clinical Associate Professor of Pediatrics here at USUHS and Dr. Hanson is a Senior Policy Analyst at the Institute for Family Centered Care. In your discussion groups, parents of children with special needs will be joining you. These parents have volunteered to share with you what they have learned from their personal experiences. During the first part of your discussion groups, you can pursue with them questions regarding their personal experiences. After this, you and they can discuss the cases together.

What to do when infants are born with severe defects is among the most controversial issues confronting physicians today. Only a few years ago, it was taken for granted that an infant born with Down's Syndrome and an intestinal anomaly incompatible with life could be allowed to die. But after this occurred in Indiana in April 1982, administrative action followed creating toll-free "hotlines" by which anyone suspecting that treatment was being withheld from a handicapped newborn could initiate an investigation. The Supreme Court subsequently struck down these "Baby Doe" rules and on April 15, 1985 the Department of Health and Human Services published a final rule defining withdrawal of treatment as medical neglect unless the infant is chronically and irreversibly comatose, treatment would merely prolong dying, or treatment would be inhumane.

The question what to do when an is infant born with severe defects, is an ideal starting point from which to begin ethical analysis. Since the infant has not yet developed personal views, it is not possible to consider the value of respecting infants' preferences or individual autonomy.

Is it better to protect an infant from inevitable suffering or to respect its sanctity of life? Karen Metzler, a woman with spina bifida spoke at USUHS a few years ago. She described the suffering she has experienced from over forty operations. Yet, to her, there is little question that in spite of this suffering she is glad to be alive.

Others feel that when an infant's suffering is considerable and cannot be avoided, it is cruel to keep the infant alive, but when its suffering is marginal, parents might best decide what should be done since no decision is clearly superior. Note that according to this idea, who makes the decision may be more important than what the decision is. Why? Since the parents are most intimately involved, allowing them to decide respects both their dignity and patient autonomy since they are the child's legal representative, and are presumed to act in the best interests of the child.

In England, surgery is withheld from children born with spina bifida who will be severely impaired in spite of the fact that without this surgery, these infants usually die within a year. The practices in Britain and Sweden are also somewhat different than the practices in regard to extremely premature infants in this country.

There are sufficient resources in this country to provide surgery to all such infants, but more infants may require neonatal intensive care than present resources permit. My son Robin was born prematurely at Georgetown University Hospital, for example, and needed to be on a respirator in the intensive care unit to survive, and my wife and I were told initially that he would have to be transferred to another hospital because there wasn't room in the neonatal ICU. There could have been no nearby neonatal intensive care units available. If other infants with much more severe birth defects had been admitted first, should my son who was premature but otherwise healthy have been permitted to die? Consider this case:

A child was born in an outlying hospital. The mother had genital herpes and it was a very premature birth, so it was clear in advance that there could be serious problems; despite that fact, the local obstetrician delivered the child by cesarean section without attempting to transfer the mother to a large hospital with a neonatal intensive care unit. Only after birth, when the extent of the child's problems became clear, did the physician attempt to transfer the neonate to a local NICU. This attempt was fully supported by the family. Three of the local units were entirely full and refused admission. The fourth had a few spaces left, but it had only six nurses on duty for the 21 children already there (way above the normal staffing ratio) and there were equipment shortages. It also refused admission although the neonatologist in charge agreed (1) that he would have admitted the child if it had been born in his hospital because "then he would be our problem"; (2) that there were several very sick children in the unit whose chances of survival, while not nonexistent, were very low; and (3) that the child's chances without intensive care were much worse (although not certainly fatal) than if he were admitted.^*

"Microallocation" problems are raised when deciding which of several children should have access to scarce intensive care unit beds. The best known of these questions arose when kidney dialysis machines first became available. They were initially scarce and determining which patients should have access became excruciating. Now, in England, kidney dialysis machines are similarly scarce and access to them is limited. To appreciate how these decisions are excruciating, in your discussion groups you will participate as if you were a member of one of these committees.

Among the most important microallocation questions which must be considered is this: if all efforts are undertaken to keep infants with severe birth defects alive, what moral obligations then exist to support them and their families throughout these children's childhood, adolescence and adult life? Should, for example, full opportunities for training and employment be provided to retarded individuals? Should their parents be compensated for extra expenses their children's retardation has made necessary? And if these children are kept alive, what efforts should be made to maximize their well being? Should mentally retarded persons in supervised homes be permitted to enjoy sex? If so, how should the question of their reproducing be handled? Should they be allowed to have children and raise them under supervision? This last question involves the interests of potential children. How do you "factor in" their interests?

You will also address a wholly different topic in your discussion group--the degree to which you should share with patients your religious and ethical beliefs concerning such questions as whether or not a mother should abort a fetus with Down's Syndrome. What role one's religious and moral views should play when interacting with patients runs throughout the course.

The case you will address in your discussion group raises the question, "Should a physician initiate discussion of religion for the purpose of influencing a patient?" The argument for doing so may be logically irrefutable if the physician holds certain underlying assumptions. If, for example, physicians believe that only patients of their own faith will achieve everlasting life and all other patients will undergo eternal damnation, their attempting to convert the patient to their own religious view would make sense.

The major argument against physicians' attempting to influence any patient to adopt a religious view is that the physician is exploiting the vulnerability of the patient. Although some patients may appreciate such physicians' efforts, others may merely tolerate them because they fear that doing otherwise might offend their physicians and if they are offended they may give less than optimal care.

This fear is common in patients and results in their tolerating much from physicians that they resent. This point cannot be over-emphasized. It is largely because patients have this fear that physicians' taking initiative to ask patients about their values becomes so important; many patients will not share that they have different values unless they are asked.

At the end of Session I, the film, "BORN DYING" will be shown. This describes a baby being permitted to die.

I encourage you at the beginning of your discussion groups to discuss your feelings about the film.

Session I - Cases for Discussion

August 25, 1998

Case 1

Missy, the daughter of Mike and Sue B., was born with spina bifida with meningomyelocele, a defect which occurs approximately once a year in every 500 live births. Spina bifida refers to an abnormal opening in the spine, and meningomyelocele is a condition in which portions of the spinal cord, as well as meninges and spinal fluid, have slipped out through the abnormal opening and are enclosed in a sac which protrudes from the backbone. Up until ten years ago almost 80 percent of these babies were certain to die in early infancy. Today, surgical treatment is available to ameliorate the condition, and about 75 percent now survive, although affected children all face a lifetime of illness, operations and varying degrees of disability, including mental retardation.

Soon after Missy's birth, a physician consulted with Mike B., giving full details of the severity of the condition which, in her case, already included spastic paraplegia, incontinence of urine and feces, and club feet. He explained the necessary treatment, costs and prognosis and urged that immediate surgery be performed to prevent further nerve damage. Without surgery, he said, Missy would probably contract meningitis which, if untreated, would either lead to more severe handicaps or even be fatal. He explained further that if Missy survived an operation, she would never be able to walk without the aid of brace and crutches, that she would have to undergo extensive physical therapy all her life, and that she had a 90 percent chance of developing hydrocephalus ("water on the brain").

The parents were well-educated, with a good income and comprehensive medical insurance. Their three-year old daughter was healthy. Each had known families with abnormal children.

Assume that legally surgery can be withheld and that the parents can decide. Sue and Mike decided not to have Missy treated.

Have the parents acted in Missy's best interest?

Case 2

A forty-year-old woman comes to you with her husband. She wishes to have amniocentesis to determine if the fetus she is carrying has Down's Syndrome. If it does, she plans to have an abortion.

You, for religious reasons, are adamantly opposed to abortion under any circumstances. Should you tell these parents that you believe that their decision to abort the Down's Syndrome fetus would be spiritually and morally wrong?

Case 3 (Three Parts)

1. You are a member of a committee which has two kidney machines and five patients who are ready to die of renal failure if they do not get a machine. The information you have been given on them is as follows:

   Patient	Sex	Marital Status	Age	No. Children	Occupation
   A	male	married	35	2	?
   B	female	single	28	0	?
   C	male	married	38	3	?
   D	female	married	32	1	?
   E	male	married	30	0	?

   Are you going to select your two lucky winners at random? If not, what criteria are you going to use?

2. You now have an additional item of information for each.

   Patient	Sex	Marital Status	Age	No. Children	Occupation
   A	male	married	35	2	Mafia hit man
   B	female	single	28	0	Concert violinist
   C	male	married	38	3	Accountant (Currently unemployed while on trial for embezzlement)
   D	female	married	32	1	Manager of house of prostitution
   E	male	married	30	0	Research on kidney physiology; last year youngest man to win Nobel Prize for his role in developing the kidney machine

   Are you going to select the two at random? If not, by what criteria? Are these criteria different from those you adopted in part A?

3. In part B, your committee elected to employ a set of social worth criteria (since the five candidates had already been chosen by virtue of the fact that medical criteria had been met). As a result, patients C and E are receiving renal dialysis and A, B, and D are having increased medical difficulties. However, at this meeting, two new candidates have applied. Both are reasonably upstanding individuals. One meets the medical criteria better than either C or E, in that she has fewer medical complications outside of the primary renal problem. The other is a highly placed politician whose particular interest has been to get additional government funds for research and development of dialysis programs. Suppose that your committee believes that you can always train more physiologists, while enlightened politicians are hard to come by, and concludes that this candidate meets the social worth criteria better than either C or E.

   You state that it is indeed a pity that no opening in the program exists for either of these two individuals, but a fellow committee member says that this is no problem; you will simply put C and E off the machines to allow these new candidates to have them. When you object that it is improper to stop treatment on people once they have been accepted, he replies that if one takes the medical and social worth criteria seriously, i.e., that certain individuals are more worthy of being saved - his proposal is the logical conclusion. If not, you are really simply allocating resources on a first-come, first served basis; and this is random allocation and not medical and social worth criteria.

   Do you accept this argument? What do you do with the new patients?

   (Adapted from cases 41, 42, and 43, Ethical Decisions in Medicine, Howard Brody)