End of Life Conversations, Developmental Disabilities,
and Other Ethical Issues
A Three Part CNN Special Assignment (1984)
Carlton Sherwood, CNN Reporter
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Dr. Bartholomew: We're going to stop any artificial means of prolonging the baby's life.
Carlton Sherwood: Such situations may be tragic, but they're not new. Our previous reports have focused on a selection process at Oklahoma Children's Hospital, where at least two dozen infants born with birth defects died after decisions were made to withhold medical treatment. Oklahoma, however, isn't an isolated case. In fact, some of the country's most prestigious hospitals, hospitals like Johns Hopkins in Baltimore, have deliberately denied certain handicapped infants the medical treatment they need to live.
Carlton Sherwood: What makes Johns Hopkins unusual is that 13 years ago the hospital allowed its doctors and nurses to reenact on camera the actual starvation death of a Down syndrome infant. This rarely shown film "Who Shall Survive?" was produced by the Kennedy Foundation to demonstrate how such decisions, decisions which are being made today around the country, impact on all those involved.
Nurse: Dr. Bartholomew is the mother awake?
Dr. Bartholomew: No, she's out.
Nurse: This baby looks a little mongoloid to me.
Voiceover: The diagnosis of mongolism can be made with a fair degree of certainty in the nursery. In addition to the mongolism, the patient had this disorder called duodenal atresia. There was no opening between the stomach and the lower intestine.
Dr. Haller: A child with duodenal atresia doesn't look to be any...
Voiceover: Dr. Haller knows a good deal about mongolism and has operated on may mongols with problems.
Dr. Bartholomew: ... doing fine. He's well hydrated and we have an IV in and the NG tube is in and...
Dr. Haller: So as far you're concerned, we're all set to go in the morning.
Dr. Bartholomew: Right.
Dr. Haller: There's some possibility that they are not going to want to do an operative procedure on that baby. She's a nurse and apparently has taken care of some children who were mongols in the past and has some real serious reservations, but...
Dr. Bartholomew: The presence of a lesion that was incompatible with life allowed them to make the decision about whether they not only wanted their mongol child but whether they wanted their mongol child to live or die.
Dr. Haller: ...making an opening so that the contents can go through all right. And so, as you can see, it's a relatively simple operation but it's in a fairly small baby.
Dr. Bartholomew: Dr. Haller wanted to operate on this patient. He did tell the parents, however, that it would be their decision.
Dr. Haller: The operation will have no effect whatsoever on his underlying mongolism, because this is a condition which is separate from, although it may be related to, the abnormality in his intestine. The mongolism condition is not going to be changed by fixing his intestinal obstruction.
Dr. Bartholomew: The parents don't want any operative procedure to be done on the baby, and Dr. Haller has decided to respect their opinion and their belief about what they want done for the child. So we're going to stop any artificial means of prolonging the baby's life.
Dr. Bartholomew: That was a long and agonizing wait
Dr. Bartholomew: I actually tried very hard to avoid going in and seeing the baby because it was very difficult for me to handle him even to examine him. I was very concerned about what this was going to do to the nurses. Their initial reaction was one of just kind of horror and disbelief that we were going to do this. We were going to take a baby who was completely healthy baby, compared to a lot of the patients they were taking care of on the floor, who was now going to go into a bassinette in some dark corner and starve to death.
Dr. Bartholomew: This is Dr. Bartholomew...
Dr. Bartholomew: I talked to the father several times, who would call and say, "How are things?", meaning is the kid still alive? I felt uncomfortable talking to him, and I felt a little funny saying, "Well, things are working out. They're just taking a little slower." It took 15 days for the baby to become severely enough dehydrated that he finally died. That was an awful long time.
Carlton Sherwood: As graphic as the Johns Hopkins film is, other hospitals like Oklahoma Children's have published equally detailed examples of their non-treatment programs in a number of respected medical journals. At the state university hospital in Iowa, for example, doctors reported that five of eight children born with spina bifida died after medical treatment was withheld following a selection process based in part on the child's quality of life potential.
Carlton Sherwood: At the Detroit Children's Hospital, 31 spina bifida infants were targeted for non-treatment, but when word of the selection process leaked out, 26% of the children were surgically treated and nearly 75% were given antibiotics. The non-treatment protocol was violated, the doctors reported, only nine infants died.
Carlton Sherwood: Federal civil rights laws under section 504 of the Rehabilitation Act prohibit the practice of withholding care based on a child's sex, race, or handicap, and a proven violation could cost a hospital millions of dollars annually in Medicaid funds. Most hospitals aren't candid about their selection programs. What records obtained by CNN show that during a two-month period last year, federal investigations into non-treatment were initiated in hospitals in Alabama, New Mexico, California, Indiana, Texas, Maryland, New Jersey, New York, North Carolina, Oregon, Tennessee, Louisiana, and Florida.
Carlton Sherwood: There's no telling what those investigations turned up since officials for the Civil Rights Division of the Department of Health and Human Services, the agency responsible for enforcing Baby Doe regulations, declined all of our requests for interviews.
Senator Smith: Your dealing with powerful institutions. How dare you go in and even suggest that something wrong is going on in that hospital?
Carlton Sherwood: State Senator Smith chairs the Connecticut Public Health Committee. In June 1982, that letter sent a letter to the Justice Department asking for an investigation into reports that handicapped children at the Yale-New Haven Hospital had been starved or the parents given lethal overdoses by physicians to administer to such babies at home. The committee's findings were based in part on the testimony of hospital officials, who admitted that during a two-year period, 43 newborns with birth defects died after decisions were made to withhold medical care and, in some cases, food and water.
Carlton Sherwood: Nine months after the complaint to Justice, Senator Smith received the reply. The investigation had just begun. That was a year ago. To date, Smith says, no action has been taken.
Senator Smith: When we have had doctors actually admit that this is going on in our hospitals and to continue to allow these situations to go on and to move at this slow pace, as far as I'm concerned, is a criminal act in itself.
Carlton Sherwood: Like the physicians at Yale-New Haven, a team of doctors at the Oklahoma Children's Hospital published an article outlining their non-treatment program. According to that report, nearly half the infants born with spina bifida were targeted for non-treatment, selections based, in part, on the doctors' opinions concerning the parents economic and emotional ability to raise a handicapped child. Dr. Richard Gross, now on the staff of a Boston hospital, headed up the medical team which acknowledged in the article that at least 24 infants died after decisions were made to withhold all medical care.
Dr. Richard Gross: We described a process that I think is a... is a good one. We also found that, um, virtually all of the babies that were treated survived, and virtually all of the ones who had no treatment died.
Michael Lottman: I mean they wrote this article with a great deal... deal of pride. They worked out these really neat criteria for deciding who should live and who should die, and they think that the results justified it. Everybody they treated stayed alive, everybody they didn't treat died. Isn't that wonderful? It's a... It's a great contribution to medical knowledge to know if you don't treat people who are sick, they're going to die
Carlton Sherwood: Dr. Gross and Oklahoma Children's Hospital officials see it differently. They say they are carrying out the wishes of the family within the bounds of the law.
Dr. J. Andy Sullivan: The most recent guidelines that have been suggested by the federal government, I think, would support the type process that we have.
Carlton Sherwood: The federal guidelines, do you know what they are and do you think that too?
Dr. Richard Gross: In a general sense, I know what they are. I, uh, I would... I would think that we would have been in compliance with them, yes.
C. Everett Koop: The new regulations could not in any way be construed as permitting a committee to decide illegitimate non-treatment...
Carlton Sherwood: Surgeon General C. Everett Koop is himself a pediatric surgeon and chief administration spokesman for Baby Doe issue. He points out that federal law does not require babies who are born dying be kept alive by artificial means. But that, he says, is different from illegitimate non-treatment.
C. Everett Koop: Illegitimate non-treatment would have somebody, such as a physician or the family, say we don't like the quality of life that this child might have down the road. We don't live in a place where we think we can take care of him as well as some other people might, and therefore we don't want him treated.
Martin Gerry; The facts, just as written by the... the doctors themselves in the article clearly demonstrate violations of both state and federal law. I think there clearly are violations of state child abuse laws, there are violations of state criminal laws. I think what you have here is a conspiracy to commit murder.
Carlton Sherwood: Some of the people who read that report say you and your colleagues, um, conspired to kill 24 infants. Um, some would even say that you murdered them.
Dr. Richard Gross: Well, I think that what we did is reported in the article. I have no control over how people, um, wish to interpret that. I... I can't respond to that.
Carlton Sherwood: When you made your recommendations to the parents, did you suggest to them at all in any fashion that what they... what they might be doing might be considered illegal in some states and perhaps even by the federal government?
Dr. Richard Gross: It was a... a matter of a problem between a baby and his parents and the physicians. And, no, we didn't... we really don't consider that federal guidelines that, uh... that other factors are that important. This is still a matter of a family's future.
Carlton Sherwood: In principle, at least, the American Medical Association agrees. Such decisions are strictly a matter between doctors and parents.
Dr. Harrison Rogers: These decisions, as difficult as they are, ought to be made in the privacy of the hospital. I think to put the federal government in the middle of this very difficult problem for parents compounds the problem.
Carlton Sherwood: There are others, however, who don't view the issue of non-treatment in black-and-white terms. There are options, they say, for parents who can't cope with raising a handicapped child.
Kent Smith: We see adoption as an alternative to the non-treatment issue. Our association, as have other organizations, have been successful in that we have a waiting list of parents who are willing to adopt.
Dr. David Shurtleff: We have plenty of parents willing and ready to adopt these children, and I have examples of very severely retarded, physically deformed, to me, honestly, somewhat grotesque appearing children, and they have loving mothers who've adopted them.
Dr. J. Andy Sullivan: Basically, we're dealing with medical questions. We have advised them of things. We thought that their decision was one that they had made, and we lived with it. We did not try to have their child adopted by a different set of parents. That's more of a social issue, and we're dealing with the medical issues.
Carlton Sherwood: Now some civil rights advocates say legal issues are also involved.
Michael Lottman: When you've killed 24 or more babies, you shouldn't be allowed just to say, "I'm sorry. I won't do it anymore." It's a little more serious than that. Ah, you... you do have a conspiracy here to violate, ah, these babies' rights. You do have a conspiracy to commit murder. It ought to be prosecuted.
Carlton Sherwood: I'm Carlton Sherwood, CNN, on special assignment.