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Pediatric Ethics Committees: An Under-Used Parent Resource
“Like being sent to the Principal’s office.” That was how a colleague described being told by a doctor that her son’s case might be referred to the hospital ethics committee. I nodded sympathetically; I felt similarly when my husband and I were informed our daughter’s team requested an ethics consult about a conflict in her care. I was angry and confused, wondering how anyone believed adding the opinions of yet another group of doctors could possibly help my child.
Over the course of our time with the ethics committee, I not only reversed my opinion of medical ethics, but was so impressed that several years later I went back to school for a second master’s degree in bioethics, and started work as a patient advocate. Initially however, my feelings on things such as “ethics committees” were skeptical at best and fearful at worst.
My first encounter with medical ethics happened four years ago, as my oldest child was dying in a New England hospital. Her medical course involved years of poorly understood, progressive problems, for which we only ever achieved a partial diagnosis of “suspected mitochondrial disease.” Being in many ways undiagnosed, we’d endured seemingly endless rounds of testing, hoping to find a name for her issues that was curable, or at least treatable. By spring of 2011 however, most of her clinicians arrived at the conclusion that we’d done our best with what current medical science offered, but our daughter could not survive much longer. We shed our goal of finding a cure, and began to gradually change our focus to keeping her comfortable .
Shortly after, several physicians began to argue with us that because we did not know our daughter’s exact diagnosis, we could not “prove” our child had a terminal illness, and could not “prove” she was beyond reach of curative medicine. They worried the strong medications necessary to keep her out of pain were interfering with her medical stability, and might even shorten her life. If even a small chance existed she may not unavoidably be dying, they wanted to stop focusing on comfort and return to a diagnostic search. My husband and I did not agree. We believed our four year-old had suffered enough, and agreed with the majority of her doctors that we’d exhausted all medical options for curing her. It quickly became apparent our physicians were strongly conflicted on the matter.. After several tense and unhappy meetings, the team decided to consult the hospital ethics committee.
At this news, my primary reactions were fear and anger. Like most parents who’ve experienced the medical world, I wasn’t brimming with confidence that a hospital-run committee was going to put my thoughts and beliefs on the same level as those of the doctors’. In fact, my husband and I suspected ethics consults were probably a way for the hospital to officially ignore parents, and do what it wanted with our child. As it turned out, our experience was quite different. The ethics committee wasn’t biased toward our doctors. Only one member was a doctor; the others included a nurse practitioner working only in ethics, and a lawyer from the community. They were fair. They listened. They met with everyone involved, and formed an independent opinion of the situation. By the end of our consult, I realized a good ethics committee had the ability to hear all sides of a conflict, give equal value to all opinions, and facilitate cooperative decision-making; even when emotions were running high. Where had such a useful resource been the last four years of our hospital life? Because of our ethics consult, medical goals for my daughter were clarified and unified, our rights as parents were explained to everyone, and our team functioned at its best for the remainder of her life. Making the difficult choice for end of life care was never going to be easy, but finally having our team’s full support made an enormous difference in our ability to move forward.
Afterwards, when I attempted to share with other parents the potential benefits of hospital ethics, I was met with disbelief. This is understandable. When inpatient, our children are not our own—we share them, and every aspect of their lives, with a rotating team of strangers. Even small decisions like taking a walk, eating a snack, or washing hair often require approval from multiple providers. Having every decision—small or large—scrutinized by someone else, can make the hospital seem adversarial, even when the medical team is compassionate. Parents frequently become wary of anyone with decision-making powers over their child, and the idea of a hospital committee evaluating the “ethics” of parent choices sounds incredibly threatening. While preparing for this article, I created a brief social media survey for the medical groups I often frequent, asking what fears or questions parents might have if their care team decided to consult the hospital ethics committee. Responses reflected fear, skepticism, and anger. This is unfortunate, as ethics committees can be powerful allies for families when used in the right situations. Below, I share some of the most frequently stated questions and concerns, in hopes that with more information, parents might feel comfortable including medical ethics discussions in their child’s care.
Frequently shared questions and fears of parents about ethics committees:
Who works on an ethics committee?
Hospital ethics committees can be large groups of six or more, small partnerships of two or three, and even single consultants. While the average committee does have some doctors on it, it is rare for all members to be doctors or nurses. Ethics is considered a multidisciplinary field, and ethicists come from social work, law, pastoral care, and many other fields. A good ethics committee includes both medical and non-medical perspectives.
Why is an ethics consult requested?
In pediatric medicine, doctors and other caregivers are responsible for making choices that reflect a child’s best interests, both short and long-term. Understanding these interests can vary based on the personal beliefs and priorities of doctors and families, as well as on expected medical outcomes of different treatments. When a medical team finds it repeatedly comes up with different answers about how to handle a problem than either the family or other team members, it is time to consider an ethics consult. In most hospitals, an ethics consult can be requested by either medical staff, OR families. It is important to check the policies in your child’s hospital, but it is common for parents to be able to request an ethics consult if they feel the medical team is not working cooperatively with them to make the best choices for their child.
What does an ethics committee do? Won’t they automatically side with my child’s doctors?
A typical ethics committee has both medical and non-medical members, and should not be biased toward either doctors or families. The committee’s job is to understand the medical conflict, and make recommendations as to how it should be handled based on philosophical and legal principles of medical ethics. In order to do this, the committee will talk to everyone involved, and often read current and past medical records, in order to understand the medical situation and possible medical choices. Usually, the committee will spend time with the main decision-makers, including the family, to understand the beliefs and priorities behind different opinions about which choice is best. Finally, the committee will often write a report explaining the laws and ethical ideas that apply to the situation, and how they do or do not give priority to one of the parties to make a choice. Almost always, the ethics committee will explain the rights of the family, and encourage cooperative decision-making that meets, as best as possible, the family’s goals.
Is an ethics consult a legal issue? Do I need a lawyer to protect my family and myself?
While consulting an attorney may help you understand your exact decision-making rights, an ethics consult is not a legal action against you or your family. Usually, the ethics committee will be attentive to your decision-making rights, so a lawyer should not be needed. Hospitals are free to consult more than one committee at a time, and can consult their legal committee at the same time as the ethics committee, but that is not a given by any means, nor have I heard of that happening on a regular basis. Bringing a lawyer to an ethics meeting may help you feel protected, but it may also make you appear defensive, and unwilling to cooperate in a way that is mutually respectful of the rest of the medical team. While you have that right, it will likely make the ethics committee less effective in resolving your conflict.
Does consulting the ethics committee mean that DCF/CPS is also going to be contacted? Is the ethics committee a type of child protection team?
An ethics consult is not a child protection consult, and the two are not necessarily linked in any way. In cases where the medical team is considering DCF/CPS involvement, the hospital is free to consult multiple teams, and may consult the child protection team and DCF/CPS at the same time as ethics. This is not standard, however. Furthermore, willingness to work with an ethics committee may deter involving child protection, as it shows you are willing to work out the conflict, and make the best decision for your child.
Do I have to do what the ethics committee recommends? Do my child’s doctors?
No, an ethics committee cannot control anyone’s actions, and its recommendations are just that: recommendations. They cannot be legally enforced against you, or the doctors. Despite that, most hospitals and doctors have respect for ethics recommendations, as they are based on state and national laws, as well as ethical principles shared by most Western societies. An ethics committee’s recommendations will often be considered if the medical conflict goes to court, though they are not legally binding. The goal however, is that working with the ethics committee will keep conflicts from escalating to legal battles.
Although not every ethics team will be equally brilliant and fair, the ethics consult, when used well, is an important tool for parents of children with special needs. It is a good idea for parents to educate themselves on how an ethics consult works at their hospital, and learn about who staffs the committees, and what happens to ethics recommendations. An ethics review can untangle a medical conflict, bring to light underlying concerns and priorities of everyone involved, and encourage decision-making that is fair to families. When parents find themselves facing significant differences of medical and personal opinions in how to care for their child, consulting the hospital’s ethics committee may be just what is needed to resolve an otherwise overwhelming conflict.