Telling Ashley’s Story

Dr. Douglas Diekema ’81 is director of education at the Treuman Katz Center for Pediatric Bioethics in Seattle, Wash., and a pediatrician and ethicist at the Children’s Hospital and Regional Medical Center in Seattle. He led the ethics panel that evaluated the controversial growth attenuation therapy for a severely disabled girl identified as Ashley. The case garnered national and international attention after the media became aware of it through a paper published in a medical journal. Diekema agreed to reflect on the case with the editors of Spark.

What’s a bioethicist?

A bioethicist is someone who studies the ethical implications of discoveries and advances in the life sciences; medical ethics is actually a component of the broader category of bioethics, and ethics is the discipline that looks at the rightness and wrongness of actions. So, bioethics can actually encompass things like environmental ethics and the ethics of scientific research. Medical ethics tends to restrict its focus more to issues that arise when caring for patients or doing research in a medical setting.

How did you become drawn to this area of work?

I’ve been interested in this area since before I attended Calvin. When I was in high school, the field of medical ethics was really just coming into its own. Prior to that time, a few individuals in the discipline of philosophy had worked quietly on these issues, but during the 1970s there was a renewed interest in medical ethics. That was a time when people began debating cases like that of Karen Ann Quinlan, a young woman who became the subject of one of the first prominent legal cases involving the withdrawal of life-sustaining treatment from a patient. It was also a time when the Baby Doe cases were coming to public awareness. The Baby Doe cases involved babies born with Down syndrome and who were born with surgical conditions that required correction for survival. It was not unusual for these babies to be denied surgery and allowed to die. Those cases started the public and academic discussion about whether that kind of medical management was appropriate.

By whom were you influenced?

When I was in high school, my dad attended meetings of a group called the Society for Values in Higher Education. The meetings were designed to include families, so we would go along. There was always a small group session on medical ethics issues, and I would listen to these discussions and find myself completely engaged by the cases being discussed and the issues they raised. When I got to Calvin, that interest drew me to courses where ethical issues might be discussed. Not surprisingly, I developed a relationship with [Professor] Bud Bouma, who had similar interests, in the biology department. But, just as importantly it drew me to the philosophy department where I took an ethics course in philosophy with Del Ratzsch. I also took two theology courses with Phil Holtrop, and both of them profoundly influenced my approach to thinking about ethics and my desire to continue to pursue that in my career.

How did you become involved with the Ashley case?

One of the jobs I’ve always had along with a handful of other people is to do ethics consults, and most of those arise in situations of conflict. We’re usually being asked to get involved with a child who is near the end of his or her life when there’s disagreement over how aggressive to be. For example, a child’s family might say they want to do everything, but it’s frequently the case that they don’t know exactly what “do everything” means. In many cases “doing everything” may not be the best thing for their child.

I was on call the week that the Ashley case came up, and it proved to be a very different kind of case—first of all because it wasn’t generated out of conflict; there was actually agreement between the patient’s parents, their pediatrician and the specialist, the endocrinologist. Secondly, the case also raised profoundly unique issues that, to the best of our knowledge, had no precedent, the attenuation of Ashley’s height being the primary one. In addition to the absence of a known precedent, there was also no professional literature related to these specific issues. You couldn’t go to papers that other scholars had written about the topic and start thinking through the issues that way. We really had to start thinking through these issues anew, without other people having laid the groundwork. It became very clear to me that this wasn’t the sort of thing an individual should do, without the help of others. Rather than treating that case as an ethics consult, where I was the sole consultant, I talked with the chair of our ethics committee and suggested this should go to the full committee for a hearing and a full discussion, which would benefit from having people from multiple perspectives and multiple disciplines talking about it and thinking about the issues together.

Could you explain the background of this case?

Ashley was a 7-year-old with profound cognitive disability. She was estimated to have the cognitive ability of a 6-month-old. People with great expertise predicted that for the rest of her life she would be a girl who was incapable of communicating meaningfully with other people, would never be able to talk, never be able to walk and was quite limited even in her ability to move. She needs her parents or someone else to do everything for her, including turn her. She needs to be dressed, needs her diaper changed, needs to be bathed, and that will always be the case. With that as a background, the parents came with three requests: the first was to try to limit her growth. Ashley, at the time we met her, was about four feet tall, and she was entering the period where she would begin growing rapidly. Her parents felt that if she were smaller, if she were shorter and lighter, then it would be easier to move her around, making it possible for them to continue to do the things they thought were important for her to do like go on family trips and outings.

Their second request was that they be allowed to have Ashley undergo a hysterectomy for two reasons. One was to control menstrual bleeding, which can be distressing for kids like Ashley. The second was to eliminate any possibility that she might become pregnant at some point in the future—something that could only happen if she was assaulted. The parents recognized that a hysterectomy wouldn’t prevent the possibility of abuse, but for many parents of children like Ashley, their worst nightmare is that while their child is in the care of someone else she will get abused sexually and then become pregnant as a result of the assault.

Their third request was that her breast buds be removed. Breast buds are little nodules that are present in both boys and girls; when girls enter puberty they begin to develop into full mature breast tissue. The parents’ request that the breast buds be removed was related mostly to the experience of Ashley’s mother and some of her relatives with breast discomfort and not wanting Ashley to have to suffer discomfort from fully mature breasts when she was likely to have straps placed across her chest for the rest of her life. I think for the ethics committee the request to remove her breast buds was probably the most difficult of the three requests to try to make sense of.

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Learn more about Ashley's case.

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More on the Ashley case debate.

What was the makeup of your medical ethics committee?

Our committee has a number of physicians, several nurses, at least one social worker, a hospital chaplain, a couple of people from our hospital administration and our hospital attorney. One of the physicians has expertise in children with developmental disorders just like Ashley’s. We also asked a neurologist who had examined Ashley to talk to us about his thoughts on whether she was likely to improve at any point in the future. One of the other physicians is a lung doctor, but the type of kids that he spends a lot of his time caring for are not a lot different than Ashley in terms of their development disability and the medical issues they encounter. There was good gender balance on the committee—it was pretty evenly split. Interestingly enough, the women on the committee had a much easier time with the hysterectomy and breast bud removal issue than the men did.

What did the committee decide?

The committee treated all three procedures separately as there was no reason that all three of them needed to be performed together. We treated them as separate requests and considered the merits of each separately. But in all cases we had to ask ourselves, “What is the harm that this little girl would suffer from any of these three procedures? What are the potential benefits to her, not simply for her family, but for her, what does she stand to gain?” We needed to be convinced that those potential benefits justified any risks to her. Framing the entire discussion was a general feeling that if there was reason to believe that she would have some potential benefit and there was not reason to believe that she would suffer harm, this was a sort of decision that a parent should be allowed to make. We also concluded that because of some lack of clarity in Washington state law, we felt that it was important to get a court order to ensure that we were being compliant with that law in performing the hysterectomy. Unfortunately, for a number of reasons, the court order wasn’t obtained. It wasn’t that the ethics committee didn’t recommend it; it just didn’t happen, and that has drawn some criticism.

What has been the general reaction to the decision?

One of the fascinating things about this case is that it has really not fallen across any predictable lines. In a lot of cases you can predict that Christians are going to fall on this end of the spectrum and non-Christians on this end and Republicans on this end and Democrats on this end; this issue seems to have split most of the traditional constituencies. I was not sure how people in the Christian community would feel about this, and the response I have gotten is in some ways gratifying. The Christians I’ve heard from have actually been more willing than many others to withhold judgment until they have heard the whole story and how the arguments have played out, and then many of them have said, “You know, I think you guys probably did the right thing for this little girl.” 

Ashley’s doing great, and the family couldn’t be happier. I had lunch with Ashley’s dad a few weeks ago to find out how things were going. He said Ashley is happy and they’re happy and that no problems have arisen since she was treated. Basically everything has worked out the way they hoped it would, and they are absolutely convinced that this was indeed the right thing for Ashley. And they think that it would be the right thing for children who are similarly situated. One of their disappointments is the reaction of at least some members of the disability rights community. His impression after hearing from literally hundreds of families like theirs is that although these groups claim to speak for disabled children and families, there is a significant number of disabled children and families for whom they don’t speak, and that concerns him. There is this group of kids who can’t speak for themselves who have been co-opted by an advocacy group which claims to know what is best for them and that seems to be making the claim that the parents of these kids don’t.

Did you expect the amount of media attention this case received?

When we wrote the article for the Archives of Pediatric and Adolescent Medicine, I recognized that it had potential for controversy. We wrote the article with permission from the parents, and I made sure that they fully understood what this could mean for them as a family. I also warned our media relations people that we had an article about to come out in print that I felt had the potential to be fairly controversial, but I also told them that I thought the controversy would probably be primarily in the professional community since it was being printed in a medical journal. I knew that it had some potential to generate media attention, but I didn’t think it was likely to do so, and that’s where I was wrong. The case has appeared in Time, Newsweek, on CNN—a long list of places—and those only represent the interviews we did. If you look at the list of who called, it’s everybody. We turned down Geraldo; Oprah wanted to do the show but wanted the family, and the family decided that it would be too disruptive if other people knew who they were. All of the major media outlets called, and there are still people trying to get the family’s cooperation to do the story from the family’s perspective.

How do you integrate your faith in your work?

What I’ve discovered is that where my religious beliefs take me is rarely different from where a standard bioethics analysis might take me." — Douglas DiekemaOne of the challenges of being a Christian who does ethics in a secular medical setting is struggling with how to integrate your own personal beliefs in a setting where overt religious and theological considerations really aren’t considered appropriate, unless they are the patient’s or family’s religious beliefs. What I’ve discovered is that where my religious beliefs take me is rarely different from where a standard bioethics analysis might take me. And, I think one of the skills I’ve had to learn is that if I do arrive at a decision about what I think is the right thing to do and my reasons for believing that are related to my religious beliefs, I have to be able to craft secular arguments to support that view. The real art of bioethics is convincing other people why something is right or something is wrong and why something shouldn’t be done or should be done. Many people aren’t going to pay attention to you if that argument is crafted purely in religious language. One of the things that I’ve had to do is craft arguments in the language of the world, which I have not found to be particularly difficult. The reality is that medical ethics has its roots largely in theological ethics, so the basic principles that many people who are not religious subscribe to actually have very strong roots in the Bible and in religious belief.

What particular passages have you found helpful?

Micah 6:8 is a passage that I see as guiding my belief system. That passage in Micah cites principles that secular bioethics has actually adopted. When Micah says, “What does the Lord require of you? But to act justly … ,” this is the principle we call justice. “To love mercy,” which is a principle we call beneficence and “to walk humbly with your God.” One of the most important personal traits for any bioethicist is humility. You have to recognize that in many cases there is a dispute about a case precisely because there are no easy answers to that case, so as you embark on trying to forge a solution or come to some consensus about what the appropriate approach might be, humility is very important. In Ashley’s case that was crucial; the reality is that there were very few if any people on our ethics committee who felt like they knew for certain what to do for this little girl, but we did the best we could. We looked at the issues seriously and looked at them from the perspective of what would be most likely to benefit this little girl. Our focus was not on our own interests or those of Ashley’s parents. We tried to do our best to determine what really was going to make her life as good as possible and remain faithful to the notion of treating others well. When you do that, you have to do it humbly. I don’t think you can leave a room after a meeting like that and feel certain that there was no other answer and that we were absolutely right and nobody could convince us otherwise. Because the next thing you do is you review the case, and in Ashley’s case we had the opportunity of nearly everybody in the world reviewing it. It’s important for us to look at the counter-arguments with an open mind because there is always going to be another Ashley, and next time we will have to try to do even better.

After the whirlwind of the Ashley case subsides, what’s next for you?

Truth be told I don’t want to see my career defined by the Ashley case. It is a fascinating case, and in some ways I feel lucky that it came my way. I think it will become one of those classic cases that is discussed in classrooms for years. I think it is good that it raised the issues that it did and got people talking about them. But I don’t want my career defined by Ashley’s case; there are lots of other things I am interested in writing about and talking about and doing in ethics. For example, I consider the biggest biomedical ethics issue in our country right now to be the fact that we have millions of children who have no access to health care. A family whose child develops a catastrophic illness can’t get any kind of social support until they’ve impoverished themselves, putting the other children in the family at risk. To me, it is a profound injustice that we would allow children who have no political voice and no control over decisions that are made on their behalf to be deprived of a need as basic as health care. It is shameful that some children living in the richest country in the world can’t get basic health care.