Making the Right Decisions for Children with Complex Disabilities
eJewishPhilanthropy / By Rikki Frohlich
Advances in medical science and biotechnology have brought about the need for a new discussion regarding medical ethics. Past practices kept medical decisions solely in the hands of medical personnel, allowing doctors to play the role of patriarch, deciding what information to release to the patient and what course of treatment to follow.
Today, with information so easily accessible, this patriarchal approach is no longer necessary or appropriate. The concept of patient autonomy has become central to the medical ethics discussion, and it is understood that every person has the right to make his or her own medical decisions. While this is straightforward when dealing with autonomous adults, who takes control when decisions need to be made regarding children, and specifically special needs children?
By definition, special needs children are not autonomous beings. Most suffer from complex medical conditions that require constant care by medical professionals. Their rights and needs are represented by their legal guardians, usually their parents, and the medical staff who treat them daily. As such, these rights are interpreted subjectively by both parties.
Though medical advice and experience is vital to the patient’s wellbeing, we must still be aware that the medical staff can suffer from what is known as “bias of experience,” and may make decisions through the prism of this predisposition. While there is no substitute for parental love and concern, parents, too, may be biased, basing their decisions upon the good of the family as a whole and not the good of one specific child.
There is no doubt that both sides have the child’s best interests at heart, but that fact is immaterial when a decision has to be made and their interpretations of the situation may be very different. What’s worse is that these differences of opinion may lead to disagreements that have the potential to scale out of hand, sometimes even ending up in a court of law.
However, leaving the decision about the welfare of a child up to a judge does not necessarily reflect the best interest of the child. Judges generally have little medical knowledge, so they rely heavily on the opinion of the medical personnel representing the child, a situation that will bring a legal decision that will discount the parents and side with the medical staff. And the judge wouldn’t be at fault for doing so, as the legal system has no other objective way to assess the situation.
So, how do we avoid conflict, objectively protect the children’s rights, and ensure that their best interests are served?
From the very beginning, our primary focus must be on the child. We have to make sure that he lives the highest quality of life possible for as long as he lives. In order to reach a decision that can be as objective as possible, it is vital that both sides, the parents and medical personnel, have open and honest communication. Each side needs to be able to respect the other’s point of view and accept that there are differences of opinion. Egos must be put aside.
It is important that both parties realize that the decision making process is not a war to be won, because if they do, the only one to get hurt will be the child. An open, honest and non-combative discussion is vital for a positive end result, namely finding the best medical interventions and treatment to ensure the best quality of life for the child.
In my experience as head nurse at ALEH, Israel’s largest network of residential facilities for children with severe intellectual and motor disabilities, I have been party to conflicts between medical staff and family members regarding quality of life decisions and the assessment of life threatening situations. Thankfully, we have never needed to take these decisions to court.
Our policy is (and has always been) truly open communication with all of our families. After all, our job is to be advocates for all of our children and recognize the complexities of the families they were born into. Being able to see both sides of the coin, bring all concerns to the table, and openly discuss all options with sensitivity and understanding on both sides allows us to reach a balanced decision that serves the best interests of our special needs children as objectively as possible.
The onus is on us. Their lives are in our hands.
Rikki Frohlich is Director of Nursing at ALEH, Israel’s largest and most advanced network of residential facilities for children with severe physical and cognitive disabilities. She is currently completing a Masters Degree in Bio-Ethics.
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