Joseph Maraachli with his father, Moe
Posted on 03/04/2011 5:41:50 AM PST by wagglebee
Joseph Maraachli with his father, Moe
March 3, 2011 (LifeSiteNews.com) - The case of baby Joseph started out fairly clear, but as time has passed many people have interpreted it as something it is not.
Joseph Maraachli was born without any problems. Then in May 2010, the Maraachli family brought Joseph to the Children’s Hospital in Detroit because he was unable to breath. After several weeks of treatment, Joseph went home with his family in good health.
In October 2010, Joseph experienced a similar problem with breathing. His parents were driving home from Toronto and stopped at the hospital in Ingersoll, Ontario. From there he was transferred to the Children’s Hospital in London, where he remains.
Who has the right to decide?
The baby Joseph case concerns the question of who has the right to decide what is in the best interests of baby Joseph.
The hospital decided to withdraw the ventilator from Joseph, which would result in death, likely occurring within a short period of time. Joseph would die while gasping for air.
The family decided that they wanted to bring Joseph home to die while in their care, in the same way that they cared for their first child who died of a similar condition more than 8 years ago. The family asked that a tracheotomy be done to allow Joseph to breath on his own, so they could bring him home.
The issue is, who has the right to decide? Does the hospital and doctor, or does the family have the right to decide on how to care for their terminally ill child?
Not about futile care
This case is different from most of the similar cases because it is not about a family requesting treatment that is futile, burdensome or extra-ordinary.
The family is not asking for a portable ventilator to be set up in their home, even though this would be a reasonable option. They are not asking for in-home nursing care to be provided. They did not ask for experimental treatment plans.
The family only asked to bring Joseph home; but to do so would require Joseph to be capable of breathing on his own. This is why they requested that a tracheotomy be done. A tracheotomy is not a difficult procedure; it is not futile, burdensome or extra-ordinary.
Not about euthanasia
Some people have suggested that to withdraw the ventilator from baby Joseph would constitute an act of euthanasia. This is not true.
Euthanasia is an action or omission that directly and intentionally causes the death of another person with the intention of relieving suffering. Euthanasia is a form of homicide.
If the ventilator is withdrawn from baby Joseph, he is likely to die, but he may survive. If he dies, his death would be caused by his medical condition and not because of a direct and intentional action or omission. Even if the intention is to cause his death, the reality is that his death is not direct because it is caused by his medical condition and therefore is not euthanasia.
The precedent set by the baby Joseph case affects everyone
If I have a massive stroke, I am not competent, I am unable to swallow effectively and I have not indicated in any way what I would want in such a circumstance and my wife would like an intervention done to allow me to be effectively fed, but the doctor says no, what will happen?
The precedents that have been set by the baby Joseph case and similar cases would force my wife to hire a high-priced lawyer to defend her right to provide reasonable care for me. She would face a well-paid lawyer who is financed by the hospital.
If the Consent and Capacity Board sided with the hospital she would be forced to appeal the decision to the Superior Court, which would cost an excessive amount of money, simply to defend her right to have basic care provided for me.
In the courts, legal precedents, like the baby Joseph case, would be used to convince the judge that the decision of the doctor and the hospital is correct.
We are all at risk, unless decisions like those made in the baby Joseph case are reversed, or unless the legislation in the Province of Ontario is not amended.
I continue to support the plight of baby Joseph and the Maraachli family and I continue to hope that the family and the hospital can achieve a mutual agreement. Maybe Joseph should be sent home and cared for on a portable ventilator?
See Baby Joseph Facebook page.
The family only asked to bring Joseph home; but to do so would require Joseph to be capable of breathing on his own. This is why they requested that a tracheotomy be done. A tracheotomy is not a difficult procedure; it is not futile, burdensome or extra-ordinary.
I asked the author of this article, Alex Schadenberg, the following questions:
To your knowledge, when Joseph's sister Zina went home with a trach, was a ventilator used at home at any point in her care, or did she survive without any ventilator assistance at home?In Joseph's case, will there be a need for a home ventilator? If not, has that been verified by any independent medical specialists?
Here is an excerpt from his response (emphasis added):
"...I have been involved with this case for a long time.1. Zina went home on a trach but with no ventilator. The family cared for Zina and they suctioned the mucus when necessary. She lived 6 months.
2. At this time the family has not requested a home ventilator, even though 2 have been donated to the family for Joseph. Since he has been on the ventilator for so long, it may be necessary to put him on a ventilator, but once again, the family has not requested it.
3. The family has not asked for home vent therapy. They never asked for home vent therapy, even though in Canada there are many parents who have been given home vent therapy.
See the comments from the author of this article I just posted above.
The child cannot swallow his own secretions, and cannot breathe on his own because of that.
If they do a trach, he will be able to breathe on his own, just like his sister did for 6 months, without a vent. The parents will probably need suction to keep the trach clear, but they will not need a vent.
But he does need a trach to be able to breath on his own without a vent.
If they do a trach, he will be able to breathe on his own, just like his sister did for 6 months, without a vent. The parents will probably need suction to keep the trach clear, but they will not need a vent.
But he does need a trach to be able to breath on his own without a vent.
Because the trach is simply needed to permit the baby to breath on his own without a vent, it would be ordinary, not extraordinary care. It is a less burdensome arrangement than the current intubation and ventilation.
However, I suspect the hospital fears the family could use the trach with a vent in the future (two vents have already been donated), and that is the basis of their refusal.
Is there not one decent qualified physician left in Canada who would voluntary give this child a tracheotomy? This is scary.
A trach is easier and faster than a root canal. It can be done in a minute or two. Not extraordinary. Less time and cost than ambu a child for miles of a ride home. Mama can hold the baby with a trach, no one can hold a person being kept breathing with an ambubag. A ventilator is extra ordinary, a trach is not. I have suctions many patients via a trach that are in coma. No ventilator. No reasonable reason not to do it except for the power of the state to say no. It is a medical necessary to move the child comfortably.
“They need to do a tracheostomy,” said Dr. Paul Byrne, an Ohio neonatologist with nearly five decades of experience and a former president of the Catholic Medical Association. “If the baby is stable otherwise, and has a tracheostomy, then the baby can be taken care of at home.”
...But Dr. Byrne told LifeSiteNews that “there’s no case” when a child is on a ventilator where the tracheostomy wouldn’t be indicated.
...Dr. Byrne called the attempt to have the state remove Joseph’s ventilator “terrible, absolutely terrible,” and insisted that in his fifty years in neonatology he’s never removed a child’s ventilator. “I’ve never seen a time to turn off a ventilator,” he said. “If a baby has a disease process that’s so bad that they’re going to die, then they die on the ventilator anyway. So you don’t have to stop the ventilator.”
He also criticized the common phrase “life support,” saying, “Life is either there or it’s not there. You don’t have to hold up the life. What we do in medicine are actions ... that support the vital activity of respiration.”
“Assuming doctors can do something to support the vital activities, we ought to do them,” he explained. “And a tracheostomy ought to be done, and the baby ought to continue on the ventilator.”
Though doctors have said Joseph is in a “vegetative state,” Dr. Byrne called it a “made-up term” similar to the notion of “brain death,” which he said was invented “simply to get beating hearts for transplantation.”
Even Joseph’s doctor in London has admitted that the tracheostomy could prolong his life. “A tracheotomy would likely provide for a longer period of life, however, in our view would not result in improvement of well-being and could reduce quality of life,” Dr. Douglas Fraser told the Ontario Consent and Capacity Board in January.
I’m still interested in the basis of categorizing something as “ordinary” or “extraordinary.” Do you have citations?
Why are the parents not transferring him to a hospital that will perform the trache?
Is this your position also? That there is no such thing as "brain death"?
As I said, a trach is NOT extraordinary care and a person can live for years with one. Some in a coma, some alert and aware. There is no reason NOT performing such a proceedure on the child. Its a crime not to do so as far as I am concerned. Don’t need a neonatologist to state anything. I have taken care of trach patients. It is considered rather minor in a hospital setting.. Done in ER’s daily across the country.
Ordinary care is always obligatory. Extraordinary care is care whose provision involves a disproportionately great burden on the patient or community, and hence is not morally obligatory.
On the Catholic version of the distinction, the natural provision of life necessities, such as food, air, and water, is an example of ordinary care, although it does not exhaust ordinary care, since easily performed medical procedures(that do not impose an undue burden on patient and community) will also be ordinary care.
In this case, a trach is an easily performed medical procedure for the provision of air, a life necessity.
If its needed for extended periods of time to maintain life that would not be maintained without it, it is extraordinary. A trach is not extraordinary as no outside equipment is necessary to maintain life....
Liz Taylor once left the hospital with a trach after some serious surgery. You can also with a conscious person, wean them off the trach over a period of time...
If you have references, I’d be interested in seeing the Catholic writings on ordinary vs. extraordinary. What I’ve heard in the past has never given me a clear line.
Remember the Smith Principle: "Verbal engineering always precedes social engineering."
Thanks, I’m well aware of the medical facts of traches. What I’m looking for is information that is broader - what makes something “ordinary” and what makes it “extraordinary”? Where is the guidance or citations to help people understand it? To help medical professionals understand it? What about the changes over the years with medical technology? A CABG, for instance, would have been extraordinary at one time, now I suspect not.
Actually, what I think you are doing is trying to create a red herring.
There is NO CASE under which a tracheotomy is considered extraordinary, NONE.
I've dealt with more of these cases on FR than I care to remember and with every one there is a group of pro-death trolls who keep bringing up issues that have NOTHING to do with the case at hand.
You say there is no case where a trach is extraordinary care; I might accept that if you can back it up. From my time in medicine, traches were not consider “ordinary” in all circumstances.
This case raised many questions for me, and I can see both sides. I’m looking for more information. A simple assertion on your part that it isn’t extraordinary isn’t very educational. Do you have a citation or reading suggestion? If not, I’ve obviously learned all I can from this discussion.
Ordinary versus extraordinary care is not an easy subject, even for medical professionals who try to be well educated and faithful to the teachings of the Church. I still have a hard time defining it and expressing it in particular cases, and I've studied it for years.
Also, what is ordinary care here in Johnstown PA is not necessarily ordinary when I'm doing missionary work in Haiti.
What is ordinary care today may not be ordinary care in five years when a totalitarian regime refuses to pay for what it arbitrarily defines as "futile" and would literally bankrupt a family if forced to provide it out of pocket.
A good place to start might be something like this Linacre article:
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