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The headline in one newspaper read, “Couple wants no surgery for son.” Another read, “Mom’s plea: Let my baby die in peace.” It was 1985. I had recently come to work at Children’s Hospital Boston and this was one of my first ethics consults. The hospital’s Ethics Advisory Committee had just begun the year before.
The newspaper clippings in our file are faded and ambering, but I remember those parents and their baby clearly. Randy (not his real name) was born early (at 34 weeks) with a short esophagus and a tracheo-esophageal fistula—something that can often be fixed. He had three major surgeries and 10 other procedures requiring anesthesia with lots of clinical problems and setbacks. He’d been in the intensive care unit (ICU) for four months; his lungs and intestines had failed and his kidneys and liver were headed for failure.
The surgeon and many of the staff thought Randy could survive, albeit with difficulty and perhaps with deficits. The neurological exam showed “no evidence strong enough to serve as the basis for withdrawing support,” although the neurologist acknowledged the stress on Randy’s developing brain. Maybe he could make it with more months of aggressive care and intensive life support. Some of the best nurses and doctors in the world work at Children’s, and if anybody could keep him alive, they could.
Randy’s parents thought he should be allowed to die. So did some of his nurses. Both parents said they would take their case to court if need be; they had already taken it to the court of public opinion by talking to journalists.
What difference, if any, should these things make? How sure should we be that a child is dying before withdrawing life support? And does a child have to be dying, or is it enough that what it would take to live is too big a burden for the child? For the family?
I talked with our new ethics committee about Randy. The committee recommended that life-sustaining treatments continue, and they were—for two more weeks. When Randy had another near-death crisis, the clinical team accepted the parents’ decision to halt any further medical treatment, and he died. I can’t remember what I thought that day as clearly as I can recall the pictures I have in my mind of Randy and his parents. To be sure, his parents felt certain that stopping further treatment was the right thing to do, and Randy’s doctors thought they should continue saving and supporting his life.
Looking back, I think this was an ethical dilemma with no single right answer. Whatever one chooses—a longer life for a very sick baby, the right of parents to decide, a doctor’s duty to fight against death and disease, or a nurse’s responsibility to advocate for a sick and suffering child—something of value is sacrificed in resolving an ethical dilemma. That year, the country went through a polarizing public debate in Congress and in the media about how to handle such cases. New regulations requiring medical treatment of handicapped infants had come out, but they didn’t seem to reflect widespread public consensus and contained ambiguous language about “inhumane” and “virtually futile” medical treatment.
It’s been nearly 25 years since Randy died, and next month, the Ethics Advisory Committee will talk about a different theme that has developed over the past decade. In contrast to those years when parents like Randy’s were saying “please stop,” the majority of moral disagreements these days involve parents who want—some would say demand—everything and anything that might possibly help their child survive, even when the clinical team is telling them there’s nothing more they can do.
A decade ago, the committee developed a policy to guide staff in confronting dilemmas raised by cases titled “Resolving Conflicts over Possibly Inappropriate or Harmful Life-Sustaining Therapies.” It describes the steps that should be taken when either parents, like Randy’s, or clinicians (as in a few recent cases) think treatment should stop and others think it should continue.
The hardest cases are those in which hospital staff think continuing medically useless treatment on a suffering or dying child is wrong, yet they also feel it is wrong to override parents’ decisions. That’s the ethical dilemma. Staff realize that parents will live with the way their children die forever. Nevertheless, cases like these take their toll on staff, too. What weight should we give to the moral distress of staff who do things day after day that they don’t believe in their hearts are right?
Back in 1986, Randy’s mother sent us a letter after his funeral. She said she could never express how fortunate she felt that she had us as a link to Randy. Few if any of us can really know what it is to face the ethical and emotional predicaments that these parents have. But after more than 25 years and lots of ethics consults, I’ve come to appreciate how very hard it is for parents and for staff.
Not all of our consults deal with death. And not all of them are ethical dilemmas. But some of the hardest are. One of the reasons we have an Ethics Advisory Committee is to help parents and staff think through the moral choices they must face in a way that enables each of us to preserve our moral consciences and continue to care—even when we aren’t entirely sure what’s right and, especially, when we think we know what’s right but others disagree. |
