I recently read an article in the London Free Press (March 22nd) about the highly publicized Joseph Maraachli situation titled, Baby Joseph Case Becomes Political Issue in U.S.
As the Executive Director the Terri Schiavo Life & Hope Network, I was personally involved in helping Baby Joseph’s parents keep control of the medical treatment decisions that were being made for their son.
Joseph was diagnosed with a brain condition that doctors believe will eventually cause his untimely death. Joseph's parents, Moe and Sana, understood that their son’s case was terminal. Their only request was for a simple procedure to be performed that would enable Joseph to spend his remaining days at home.
However, attending physicians at the London Health Sciences Centre hospital in Ontario believed they knew what was in the best interest for Baby Joseph. Sadly, but not surprisingly, their decision was to remove Joseph's breathing machine so that he would die at the hospital.
Joseph's parents objected feeling their son deserved better. After much fanfare and wrangling, the one-year old was transferred to a SSM Cardinal Glennon Children’s Medical Center in St. Louis where the parent’s wishes for medical treatment are being respectfully considered.
Subsequent to the Baby Joseph case was the tragic situation of Ms. Rachel Nyirahabiyambere. An Alexandria Circuit Court ruled that Ms. Nyirahabiyambere's medically-assisted food and water was to be removed and that she should subsequently be dehydrated to death against her family's wishes.
An appointed guardian – a complete stranger to Ms. Nyirahabiyambere and her family – decided that she should be receiving only palliative care because she was "profoundly vegetative" and had no chance of recovery.
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The family looked to the Catholic hospital (Georgetown University) for support. But much to their disbelief the hospital wiped their hands clean of Ms. Nyirahabiyambere's care. Apparently the case was too costly and she had no insurance. So therefore, this institution based on Catholic principles did nothing to stop the public guardian from carrying out Ms. Nyirahabiyambere dehydration death.
Fortunately, her family fought back and three weeks after Ms. Nyirahabiyambere's feeding tube was removed, a judge ordered that she be given food and water immediately while the legal issues were being weighed.
The cases of Baby Joseph and Rachel Nyirahabiyambere are not isolated situations. Indeed, this is the reason our family established Terri's Life & Hope Network. Following the brutal death of my sister, Terri Schiavo, we intend to keep issues like this at the forefront of thought when it comes to protecting the medically vulnerable. During this time, it has become abundantly clear that the basic right to receive life-sustaining medical care is being eroded more every day.
In fact, it has escalated to the point that physicians, attorneys, hospital administrators and others can make medical decisions that are completely contrary to an individual's wishes – even if this "medical treatment" involves basic and ordinary care such as food and water.
The people pulling the strings are commonly referred to as "ethics committees," people with unilateral power to make life and death decisions regardless of a patient's desires or those of his or her immediate family.
Leading experts on medical ethics like Wesley J. Smith and Rita Marker have been warning us about these committees long before my family has been helping other families fight against them.
Sadly, if you think you are protected from being denied food and water because you are in a Catholic hospital, you might want to think again. Many of the calls for help that we receive are from families that are up against Catholic hospitals and their so-called ethics committees. This is in spite of the fact that the denial of food and water from anyone is contrary to the fundamentals of Catholic teaching.
This is why I and others believe that a type of "death panel" already exists in the form of ethics committees that can subjectively make decisions to end lives.
Some, like Texas attorney Tom Malloy, may argue this point. According to this same March 22nd interview regarding the Baby Joseph case, Malloy (who has been a member on five ethics boards) said that all the dissent over last year's health care reform law and questions of how to treat vulnerable patients like Baby Joseph were simply "an all-out effort to defeat health reform." Malloy stated that decisions by ethics committees "have happened for years and they have nothing to do with Obama-care."
It is important to note that Malloy was instrumental in legislation to ensure that ethics committees have the last word over the removal of life-sustaining medical treatment and has admitted that "some" ethics boards "have ended the life of a patient, even children, over the objections of family."
Well, if these aren't a type of "death panel," then what will we be facing once the government controls our healthcare?
Consider attorney Thaddeus Pope, a professor at the University of Delaware School of Law, who confirmed Malloy's assertion regarding ethics boards. Professor Pope believes that if cases like Baby Joseph were to happen in states like Texas, it wouldn't even be newsworthy. "The mainstream media isn't even covering these [cases] anymore. It's not news." Pope added, "The idea is that it never happens in the U.S. – it happens all the time."
Terri's case, Baby Joseph and the situation involving Ms. Nyirahabiyambere are only a few of many tragic and controversial cases that have made it into the public spectrum for debate.
However, most people commenting on these situations have never been put in the position of having to fight the "system" in order to protect their loved ones – let alone care for someone with cognitive disabilities.
We chose to advocate for families like Baby Joseph's because our family knows firsthand how devastating it is to experience the needless and inhumane death of a vulnerable child or a loved one.
Though we don't believe people should be arbitrarily kept alive at all costs, cases like Baby Joseph's and Ms. Nyirahabiyambere's clearly illustrate how family and parents should maintain the right to make their own medical decisions.
Regardless, it is always gravely wrong to deny anyone our most basic care – food and water. When that simple right is stripped from a family member or from an individual and placed in the hands of a panel of strangers, nobody wins.
Certainly, no parent or family member should ever have to witness a child or loved one being deliberately put to death. Lawyers fight the causes, judges make the orders and medical staff members carry out the actions. They all return to their jobs and their daily lives while the parents and family members live with the devastation forever.
Or do they? Certainly not in the case of my father – who never recovered emotionally from his daughter’s barbaric death – those who succeeded in ending his daughter’s life, also ended his life as well.
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