The Importance of Open Communication with Families of Children in a Residential Framework to Ensure the Best Interests of Every Child
By Rikki Frohlich, Director of Nursing Services, ALEH Jerusalem
Advances in medical science and biotechnology have brought about the need for a new discussion regarding medical ethics. Past practices kept medical decisions in the hands of medical personnel, as the doctor played the role of the patriarch, deciding what information to release to the patient and what course of treatment he should follow. Today, with information easily accessible, this patriarchal approach is no longer necessary. The concept of patient autonomy has become central to the medical ethic discussion. The accepted thought today is the understanding that every person has the right to make their own medical decisions.
All this is true when dealing with autonomous adults, but where do we stand when decisions need to be made regarding children and specifically children with complex disabilities?
By definition, children with complex disabilities are not autonomous beings. Most suffer from complex medical conditions that require constant care by medical personnel. Their rights and needs are represented by their legal guardians, usually their parents, and by the medical staff who treat them daily. As such, these rights are interpreted subjectively by both parties.
There is no doubt that both sides must have, and generally have, the best interest of the child at heart. But sometimes the child’s best interests are interpreted differently by each side.
Medical advice and experience is vital to the patient’s well being, but we must be aware that the medical staff can suffer from what is known as “bias of experience”, decisions can be made based on that bias. There is no substitute for parental love and concern, but here too decisions can be made based on the good of the family as a whole and not the good of one particular child. Both sides believe that they have the child’s best interest at heart. This difference of opinion can lead to disagreements between both parties, having the potential to scale out of hand, sometimes ending up in a court of law. Leaving the decision about the welfare of a child up to a judge, does not automatically 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 side with the medical staff. The legal system has no other objective way to assess the situation.
So how do we avoid conflict and objectively protect these children rights, making sure their best interests are served?
Our primary focus has to be on the child. We have to make sure that he lives the highest quality of life that he can, 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, 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 need to be put aside. It is important that both parties realize that this is not a battle to “the death” where one side wins and the other loses, for if that is the case the only one to get hurt will be the child. This open and honest discussion is vital for the end result, where a decision has to be made regarding medical interventions and treatment so that these children can live their best possible life.
In my experience as head nurse in ALEH, a home for special needs children with a wide range of medical conditions, I have been party to many conflicts between medical staff and family members regarding decisions that needed to be made in life threatening situations and quality of life decisions. Never have we needed to revert to legal decisions. Our policy is and has always been open communication with all our families. Our job is to be advocates for all our children but also to be able to recognize the complexities of the families they were born into. Being able to see both sides of the coin, being able to bring all concerns to the table, to openly discuss all options with sensitivity and understanding on both sides, helps to reach a balanced decision that serves the best interests of our children as objectively as possible. This is our goal.
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