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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Carlton Sherwood: When Joey Wade was born five years ago with spina bifida and exposed spine, the outlook was bleak. Dennis and Denise Wade say the doctors told them that Joey might be paralyzed from the waist down and because of brain damage, probably retarded. The same doctors, however, recommended aggressive medical treatment, and today Joey suffers only minor paralysis and no retardation. With that kind of success, the Wades have the utmost confidence in Joey's doctors, but now they are confused and frightened.
Denise Wade: We didn't know anything about spina bifida, and if...if they had of told us that he... he was so severely damaged that there was no sense in doing anything for him, we would have probably accepted that. That's scary.
Carlton Sherwood: What disturbs the Wade's is this article published in a medical journal Pediatrics. It describes how between 1977 and 1982, a hospital team recommended no treatment for nearly 50% of its spina bifida newborns, and how 24 babies selected for non-treatment, died. The hospital? Oklahoma Children's Memorial where Joey was treated. And the physicians? A team of experts headed by Joey's surgeons, Dr. Richard Gross.
Denise Wade: When I read this, they're not the same people that I knew. The people who would do this, to me, would have to be cold, insensitive. They all seemed to love the kids so much. How could they love the ones that they saved and...?
Carlton Sherwood: In their report, the doctors detailed a selection process based in part on the child's potential to move above without a wheelchair, the possibility of mental retardation, and perhaps most controversial of all, the family's financial and emotional ability to successfully raise a handicapped child. According to the report, quality of life is so crucially important that children with identical birth defects could receive different medical care or be selected for non-treatment depending on the contribution from home and society. The report also showed a mathematical formula where quality of life is determined by multiplying the patient's natural mental and physical endowments by the sum of the contributions from home and society.
Dr. Richard Gross: There has to be a way to finance this care. And, yes, we do consider some of those, uh, factors.
Carlton Sherwood: Why do you think a... many of your colleagues and other people are... are so critical of that?
Dr. Richard Gross: It's not something that we as physicians should take into account, the ability to pay. On the other hand, if, uh, every family has a finite amount of resources and you have to distribute those resources in... in a certain way, and if you have a family with limited resources financially, emotionally, and, as I said, sometimes geographically, uh, you're going to have to make some compromise.
Carlton Sherwood: Dr. Richard Gross, now on the pediatric staff of a Boston hospital, initiated the selection process at Oklahoma Children's and served as a lead author of the Pediatrics article.
Dr. Richard Gross: We described a process by which this could be performed. In other words, evaluation by several physicians, a social worker, the, uh, the nurse, a meeting of everybody involved, a meeting with the parents, where we described a process that I think is, ah, is a good one. We also, ah, found that, um, virtually all of the babies that were treated survived and virtually all of the ones who had no treatment, uh, died.
Marilyn Lovelace: She wouldn't have been treated. There's no doubt in my mind after reading this Cherry would have been one of the selected to die.
Carlton Sherwood: Marilyn Lovelace's daughter was born before the selection process began but has relied heavily on Dr. Gross and his colleagues for her continuing medical care.
Marilyn Lovelace: They've all been so good to me. They've been wonderful to me. But I wonder in reading this if they've done the best for Cherry that they could have done.
Carlton Sherwood: How's that?
Marilyn Lovelace: If they feel like she's a good candidate to be worked on, if she's worth going on and... and making her life the best it can be. This is telling me they're only working on the kids like they feel like they need to work with, and the others are just kind of left out in the cold.
Dr. Richard Gross: We did our best to give those families an informed consent. Present them with all of the, um, expectations that we could give them to the best of our abilities. Gave them, really, a choice in the decision making. Now if they made the choice that they wanted to go ahead, we would take care of that child to the best of our capabilities. If, um, they and us made a choice that they did not want to proceed with, um, the treatment that could have been instituted, uh, we would support them in that decision.
Carlton Sherwood: The doctors' statistics tell this story. Of the 69 infants evaluated during the course of the five-year study, 33 families were told they were under no obligation to treat their child. Eight families rejected that recommendation. All but two children in that group survived. One family moved out of state and was lost to follow up. The remaining 24 selected for non-treatment were followed by the hospital but placed at the Oklahoma Children's Shelter, a federally funded intermediate care facility neither designed nor equipped to handle acute-care infants. The shelter has recently been cited by the state for numerous health and safety code violations. Two weeks after CCN questioned state officials about the shelter, it was closed and its owners charged in a civil suit with racketeering and fraud.
Nurses Aide 1: They told me to pinch the children's noses and take this syringe-type instrument and squirt the food into their throats or into their mouths, and they would swallow eventually, you know.
Carlton Sherwood: Did you ever have a case where they didn't swallow the food?
Nurses Aide 2: Um-huh.
Carlton Sherwood: Where they started choking?
Nurses Aide 2: Um-huh
Nurses Aide 1: I didn't. Did you?
Nurses Aide 2: Um-huh.
Nurses Aide 1: What happened?
Nurses Aide 2: They'd choke and food would... They'd choke and the food would start coming out the sides of their mouths, you know, all over the place. And finally, you'd just stop and when, and what most of the nurse aides would do is when it came to that point, you know, is well, you know, "I'm not going to take my time with you," and put them back in their bed and that's it, the kid just don't get fed.
Carlton Sherwood: According to the doctors' report, the untreated survivor has not been a significant problem in our experience. All 24 babies who have not been treated at all have died at an average of 37 days.
Carlton Sherwood: If you look at the statistics for aggressive treatment, approximately 85% of the children, if they're treated aggressively, will survive. If you spell that out in your program, that would mean that roughly 10 children in that group, the 24 who died, would have survived. Would you argue with that?
Dr. Richard Gross: No.
Carlton Sherwood: What would be the justification, then, for letting those 10 children die?
Dr. Richard Gross: It would have been the family. Knowing that, I think that's very clear from reading what we've done.
Carlton Sherwood: Again, those same 10 parents—do you think they would have made that decision on their own without you all recommending or offering the option to them?
Dr. Richard Gross: If we had... if we had told them that they had to have their child treated and if he needed an immediate operation, I don't think they would have argued with us.
Carlton Sherwood: Oklahoma Children's Hospital officials refused to discuss any individual cases and only reluctantly agree to talk about the selection process, which, they insisted, was a matter of parental choice and not a factor in the infants' deaths.
Carlton Sherwood: Are you trying to tell me that these 24 infants were sent over there as part of the study to survive.
Dr. J. Andy Sullivan: We don't send them anywhere. We discharge them to their family. If their family requests alternate placement, we'll honor that placement. We do not attempt in any way to alter the survival or non-survival of these children. We counsel the family. They elect what they want to do.
Dr. Richard Gross: Well, I think it takes a good... great deal of courage of the amount of parents to say in the face of a recommendation from a physician that they wish to go counter to that. They certainly do not have the background at the time the child is born to really know what is... what is expected.
Carlton Sherwood: Do the parents make these decisions
Veronica Donnelly: Absolutely not, not on their own. I am sure that the doctors there are just passing the buck, as they say, that parents made the decision. You make the decision, but you base your decision on what the doctors tell you.
Carlton Sherwood: Fred and Veronica Donnelly should know. Their daughter Catherine was once treated by Dr. Gross, and like other parents we spoke with, they were shocked to learn of the selection process.
Veronica Donnelly: They're there to heal. They're not there to make qualitative decisions about where you're going to be in 10 years. They have the skill to close a spina bifida's back. Use the skill, close the back, avoid infection. They have the skill to put a shunt it, put it in. Let the... let these little children maximize their potential. That's all that we parents ask. Give us the rest of the burden, you don't have to take it.
Carlton Sherwood: The hospital sees it differently. Dr. Sullivan argues that just because the children at the shelter were not given surgery and medication for spina bifida does not mean they were deprived of routine medical care.
Dr. J. Andy Sullivan: Again, you are intimating that because some children are not on an active antibiotic when they're not acutely ill, that we are denying them treatment. Our experience now is that you don't need antibiotics to treat it even if the sac has not been surgically closed. If one applies a dressing and keeps it clean, then antibiotics are not routinely necessary.
Dr. David Shurtleff: At least in my state that it's not only inappropriate medical care, but it's even considered illegal.
Carlton Sherwood: Dr. David Shurtleff is Chief of Pediatrics at Children's Hospital in Seattle, Washington.
Dr. David Shurtleff: I think it's an important antibiotics are now in this day and age considered quote "ordinary treatment" end of quote. And that's what's required as minimum care by law in the United States.
Dr. David Macleod: I certainly don't think that what is represented in that article in any way represents what physicians who are knowledgeable and deal with this disea... disease would recognize as adequate or appropriate care.
Carlton Sherwood: Dr. David Macleod is Chief of Pediatrics at Chicago Children's Hospital and a nationally recognized expert in the field of spina bifida.
Dr. David Macleod: Either it's a different disease in Oklahoma, or they're basing their judgment on articles written 20 years ago. I don't understand how they can arrive at any kind of treatment which allows half of the children to die, when I know that somewhere around 70 to 75% of these children are likely to be competitive and independent. And even the group that isn't in that competitive and independent group, I think, they have meaningful lives.
Carlton Sherwood: Parents of spina bifida children we spoke with agree with that assessment, and they insist that no one, not even doctors, can judge or should be allowed to judge how a family or child will cope with the problems of a handicap.
Veronica Donnelly: No committee of doctors could predict how I would adjust to that, because I didn't know, and Fred didn't know how he was going to adjust to it. So that should not even enter into it. Treat the baby.
Marilyn Lovelace: She's given so much. Nothing can take from that. And if I didn't have her, there's no telling where I would be right now, 'cuz she means that much to me and to my life. And in my children's lives, and to my husband's life. Without Cherry, I don't know what would happen to us.
Carlton Sherwood: Like six thousand other hospitals around the country, Oklahoma Children's Memorial relies heavily on federal funding for its continued operations, subsidies which could be withdrawn if they fail to meet minimal federal standards for treatment of newborn infants. The law says "medically beneficial treatment should not be withheld from handicapped infants solely on the basis of their present or anticipated mental or physical impairment." That's what it says. But is it being enforced? And if not, why? In our next report, we'll try to answer that question. Carlton Sherwood, CNN, on special assignment.