Charlie Gard situations have happened here too

This article was published by National Review online on July 4, 2017.

By Wesley Smith

Wesley Smith

There is a proper international uproar over U.K. doctors winning the right in court to unilaterally remove the infant Charlie Gard from life support. 

Some have commented on the case as if that is a product of the UK’s socialized medical system. It’s not. It is a product of utilitarian bioethics advocacy for the right to refuse wanted life-sustaining treatment — called “futile care” — based on the doctor’s or a hospital bioethics committee’s values on the moral worth of the ill patient’s life and/or the high cost of care. 

Whose baby is Charlie Gard anyway?

Similar authoritarian care withdrawals as has been imposed on Charlie Gard have happened here too — and to very ill patients of all ages. I get into a few of these cases involving infants today over at First Things. 

• There was the Baby Ryan case in Seattle, in which a hospital actually reported a family for child abuse because they obtained an injunction against removing kidney dialysis. In the end, the doctors were wrong that death was imminent. The boy lived four years as a happy, if sickly child, who loved to give high-fives. 
• The parents of Baby Terry in Michigan were stripped of their parental rights for refusing to consent to withdrawing life support. 
• In Canada, doctors treating Baby Joseph insisted on the right to remove life support from a terminally ill baby and refused a tracheotomy that would have permitted the baby to go home to die with his family. Priests for Life eventually paid for the baby to be flown to the USA for the procedure, which was successful. Joseph died several months later in his parents arms. 

Charlie Gard

The Charlie Gard case is unique in only one respect: It is the only futile care case I know of in which the hospital and the law is preventing discharge to another facility or allowing the patient to go home to die. From, “Whose Baby is Charlie Gard, Anyway?” 

The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing.  

And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies — and others facing futile-care impositions — ultimately owned by the hospital and the state? 

Again. This isn’t about socialism — although that issue is relevant. More, it is about cost containment — including in free-market systems — and the attempt by the bioethics movement and medical intelligentsia to replace the equality/sanctity of life ethic with a more utilitarian “quality of life” view.

Whose baby is Charlie Gard, anyway?

This article was written by Wesley Smith and published by the National Review online July 4, 2017

Wesley Smith

By Wesley Smith

The time has come for your baby to die,” a doctor told the grieving parents of a catastrophically ill baby. No, this wasn’t the ongoing Charlie Gard case—so prominent in the news today—in which United Kingdom doctors and judges have told Charlie’s parents that their son’s life support will be removed, no matter what they want. (Charlie has a rare terminal mitochondrial disorder.) Rather, that blunt declaration was uttered in 1994 in Spokane, by a doctor to the parents of Ryan Nguyen, who—born at just twenty-three-weeks gestation—was on kidney dialysis and struggling for his life.

Then as now, doctors declared that further life-sustaining treatment of the child was “futile” and would only prolong his suffering. Then as now, desperate parents sought court relief against their son’s being pushed into the grave sooner rather than later. But then, unlike now, a court in Ryan’s case temporarily blocked the removal of treatment, pending trial.

The court never decided who had ultimate say over Ryan’s care, his parents or medical professionals, because his treatment was transferred to a different doctor who did not view his case as futile. Ryan was soon weaned off dialysis and survived for more than four years, a time in which he was a generally happy, if sickly, child who liked to give “high fives.” Had his original doctors successfully imposed their futile-care philosophy on their patient and his parents, Ryan would have died before he’d truly had a chance to live.

Before Baby Ryan’s ordeal, the parents of “Baby Terry”—also born after twenty-three weeks gestation—faced a similar ordeal. The ethics committee at the Hurley Medical Center in Flint, Michigan weighed in on August 9, 1993, opining that to honor the parents’ desire to continue Baby Terry’s treatment “would be contrary to medical judgment and to moral and ethical beliefs of physicians caring for the patient” (my emphasis). In other words, when it came to choosing between the values of the parents—based in large part on their religious faith—and the values of doctors and hospital bioethicists, the state argued that only the latter matters.

Joseph Maraachli with his mother, Sana.

On that basis alone, a judge found Terry’s parents unfit to make health-care decisions for Terry and stripped them of their parental rights. He awarded temporary custody to the maternal great-aunt, who had previously stated her willingness to obey the doctors. Before that could happen, the infant died in his mother’s arms, aged two-and-a-half months.

In 2011, a similar struggle hit the headlines. Ten-month-old Joseph Maraachli was diagnosed with a terminal and progressively debilitating neurological disease. He was being cared for in a London, Ontario ICU when doctors told his parents, Moe Marraachli and Sana Nader, that they were going to withdraw all life-sustaining care.

Moe and Sana vehemently disagreed, and a bitter dispute erupted between them and the hospital’s doctors and administrators over continuing Joseph’s care. There were two areas of disagreement. First, there was the hospital’s stated intention to end all life-sustaining treatment. Second, when Moe and Sana asked doctors to perform a tracheotomy so that Joseph could be taken home, the doctors refused, claiming such a procedure was medically and ethically unwarranted.

Litigation ensued. The bitter impasse was broken when the American nonprofit organization Priests for Life paid to transfer Joseph to a hospital in St. Louis that was willing to perform the surgery. The operation was a success, and Joseph was brought home, where he died peacefully in his sleep five months later.

Charlie with his parents

These, Charlie’s, and many other similar cases I could recite, involving profoundly ill people of all ages, are examples of what is known in the bioethics trade as “futile care” or “medical futility”—or, as I call it, futile-care theory. FCT authorizes doctors to refuse or withdraw wanted life-sustaining medical treatment over the objections of family and patients when the doctors and/or a bioethics committee believe that the patient’s quality of life makes that life not worth living—or, lurking in the subtext, not worth the resources required to sustain it.

A couple of important points need to be made: We are not talking about an intervention without a potential physiological benefit to the patient—a medical determination. Rather, FCT constitutes a value judgment. As bioethicist Dr. Stuart Youngner once put it, “futility determinations will inevitably involve value judgments about: 1) whether low probability chances are worth taking; and 2) whether certain lives are of a quality worth living.”

Worse, FCT empowers strangers to make medicine’s most important and intimate health-care decisions. Deciding whether to accept or reject life-sustaining care is one of the most difficult medical choices. Under FCT, a patient’s decision—whether it be the desire of an infant patient’s guardians or written in an adult patient’s advance directive—matters less than institutional and professional opinions.

Given all that, Charlie Gard’s heartbreaking situation is not surprising. However, until Charlie’s case, the patient or family has always had the option of finding alternative care. The hospital refusing Ryan’s dialysis did not seek to prevent his transfer. Neither did the hospital in the Baby Joseph controversy.

This is where Charlie Gard’s case is breaking new and even more authoritarian ground. Not only are doctors and judges forcing Charlie off life-support; they are also declaring that their ethics rule over Charlie’s life, even if the parents—Chris and Connie Gard—find alternative care. As far as I know, this is unprecedented in futile-care controversies.

Chris and Connie have raised more than $1 million through crowdfunding to pay for Charlie to be flown to the United States for an experimental treatment that has shown some potential in other mitochondrial conditions. If that course proves impossible, they just want to take their baby home so he can die there instead of in a pediatric ICU. But the hospital administration refuses to permit Charlie to be discharged! And the courts have agreed, based on a determination of what doctors and lawyers believe to be Charlie’s “best interests.”

The only silver lining in this tragedy is that a very sick baby’s life still has the power to move hearts. Not only have Chris and Connie received tremendous popular support internationally, but they are also being backed by two of the most visible leaders in the world: Pope Francis and Donald Trump.

The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies—and others facing futile-care impositions—ultimately owned by the hospital and the state?

Wesley J. Smith is a senior fellow at the Discovery Institute’s Center on Human Exceptionalism and a consultant to the Patients Rights Council. His most recent book is Culture of Death: The Age of “Do Harm” Medicine.

Baby Joseph was not "PVS"

Moe, Sana & Joseph Maraachli

On September 27, 2011, Joseph Maraachli, better known as baby Joseph, peacefully died at home with his family caring for him in Windsor Ontario Canada.

Some of the articles about the baby Joseph case referred to him as being in a Persistent Vegetative State "PVS". Baby Joseph was not in a "PVS" or brain dead condition, but rather he was living with a neurological condition that resulted in him dying a natural death.

The baby Joseph case gained international attention when Children's Hospital in London Ontario decided to remove the ventilator from Joseph against his parents wishes. Moe & Sana Maraachli had accepted that Joseph would likely die of a similar neurological condition that their daughter had died from several years earlier, but they were determined to bring Joseph home where they could care for him throughout the final months of his life. The baby Joseph case affected us all.

To bring Joseph home required that a Tracheotomy be done to enable Joseph to breath on his own. The doctors and the hospital refused to do a Tracheotomy and in turn brought the case to Ontario's Consent and Capacity Board who sided with the doctors. The Maraachli family appealed the decision of the Consent and Capacity Board to the Superior Court, who also sided with the doctors and the hospital.

The crux of the decision was that Joseph would not recover from a "PVS" state. The term "PVS" has come to mean that there is no hope of recovery and that all medical treatment can be withdrawn. What is ridiculous about this medical terminology evolution is that people who are labeled as "PVS" are not only being denied medical treatment but also basic care, such as fluids, food, antibiotics and oxygen.


Nonetheless baby Joseph was not in a "PVS" state.

Soon after returning from St. Louis, I went to meet with the Maraachli family and to see Joseph. When visiting the Maraachli home in Windsor it was clear that when Joseph was held, when his back was rubbed, when he was loved and cared for, that he was reacting.

Some would call these reactions "reflexes" but Joseph was not simply reacting by reflex, but rather he was reacting to touch and stimuli.

No one questions that Joseph had a neurological condition, but to label baby Joseph as "PVS" is inaccurate and dehumanizing.

Kim Hessels & Baby Joseph

A family friend, Kim Hessels, told a reporter:

They sang to him and played music for him. It calmed him when he was upset. 

He didn't like wearing socks. He fussed until someone took them off.

We need to be very careful before labeling a human being. Every person deserves to be treated with equality and dignity. People with disabilities, especially those with Neurological disabilities, need to be treated with equality and dignity.

Baby Joseph is home and breathing on his own

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Baby Joseph with his father.

Now that baby Joseph is home, having had a tracheotomy and breathing on his own without a ventilator, it is important to once again consider why this legal battle occurred and why the Ontario government needs to change the Health Care Consent Act. The fact that Joseph is breathing on his own, without a ventilator, proves that the request that a Tracheotomy be done was appropriate and was not extra-ordinary, excessive or burdensome. It would be good to find out why the hospital actually refused to do a Tracheotomy when their proposed plan of treatment was to cause him to die of asphyxiation?

The Euthanasia Prevention Coalition (EPC) became involved in the baby Joseph case because of the way that the Consent and Capacity board and the Ontario Superior court decided to withdraw the ventilator from baby Joseph without the consent of his parents. The error in judgment by these legal bodies affects us all.

The meaning and value of life cannot be assessed by medical tribunals and the court and it is not measured in years, months, or days. It is measured in the giving and receiving of love. Love is the greatest quality of life that there is. This is the lesson that the Ontario/Canadian medical system needs to learn. This is what they are blind to.

Who has the right to decide?
The baby Joseph case was about who has the right to make medical treatment decisions and what is in the best interest of baby Joseph. The Children's hospital in London Ontario wanted to withdraw the ventilator from Joseph, which would likely have resulted in him dying, grasping for air. The family wanted to bring Joseph home to care for him in the same way that they cared for their first child who died of a similar condition 9 years ago. The family asked that a tracheotomy be done to allow Joseph to breathe on his own, so they could bring him home.

The Baby Joseph case was not about futile care.
The baby Joseph case was different than previous cases because the family was not requesting treatment or care that was futile, excessive, extra-ordinary or burdensome. The family simply wanted to bring Joseph home, which required that a Tracheotomy be done to enable Joseph to breath.

The Baby Joseph case was not about euthanasia.
Some people have suggested that withdrawing the ventilator from baby Joseph would constitute an act of euthanasia. Euthanasia is an action or omission of an act 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 had been withdrawn from baby Joseph, he was likely to die, but he might have survived. If he died, his death would have been caused by his medical condition and therefore it is not euthanasia.

The legal system in Ontario is unfair.
A significant problem in Ontario is that the legal system is loaded against families. When a family and the doctor/hospital disagree about the treatment plan for a person, these cases are sent to the Consent and Capacity board for a decision. This is where the inequality begins. The doctor/hospital have nearly unlimited financial resources to hire a top lawyer who has experience in this area of law. The family often has limited resources and sometimes hires a legal aid lawyer who lacks experience in this area of law. When the Consent and Capacity board sides with the doctor/hospital, often the family will give up, but sometimes they appeal the decision to the Superior Court. It is prohibitively expensive for the family to bring a case to the Superior Court and yet the doctor/hospital has no fear of the cost because the health care institution has significant legal resources provided by the taxpayer. Because of the inequity in the legal defense, case after case has resulted in decisions by the Consent and Capacity board or the Superior court supporting the doctor/hospital. The law's inequality has resulted in a growing body of precedent-setting cases that have increased the power of the doctor/hospital to make medical decisions against the wishes of the family. The Ontario government must change the Health Care Consent Act.

It is unreasonable that families are required to spend an incredible amount of money in order to defend their rights. If doctors/hospitals have access to huge legal budgets that are from the taxpayer, that is spent to fight families (taxpayers) who are simply attempting to make medical care decisions on behalf of family members, then the system should also pay the cost for the family. Ontario citizens should recognize that the great majority of precedent-setting legal cases have given more power to the doctors/hospital. The rights of each citizen in Ontario to make medical treatment decisions have been eroded. We hope that the energy that has been created around baby Joseph can be used to help other people by changing our health care statutes.

The Rasouli case
This is why EPC sought and become an intervenor in the Rasouli case. The Rasouli case will determine if doctors are required to obtain consent before withdrawing life support. This means that the Rasouli case will determine that a doctor is required to obtain consent to withdraw a respirator, or even fluids and food. It is euthanasia to cause a persons death by withdrawing fluids and food when that person is not otherwise dying. Death is then caused by dehydration.

You also need to protect yourself. You can protect yourself by contacting EPC and ordering the Life-Protecting Power of Attorney for Personal care. The cost for this legal document is only $10.00.

The case of Desmond & Maria Watson, a victory and a love story

Recently the case of baby Joseph created an incredible amount of media interest. At the same time, similar cases are being heard in Canada, one of which is the case of Desmond Watson.

Toronto Star reporter Robert Cribb reported on March 18 and March 20th on the case of Desmond & Maria Watson.

The case concerning Desmond Watson who has been living at the Oakville Trafalgar Memorial Hospital with failing health for the past 14 months is another case concerning who has the right to decide when to withhold or withdraw end-of-life treatment or care.

Maria Watson, who has been married to Desmond for 69 years, was told by the doctor recently that they were going to remove the ventilator from Desmond. Maria is the legal Power of Attorney for Desmond, refused to consent to the decision of the doctors. At the time, Desmond had pneumonia and was ventilator dependent, but since then his pneumonia has cleared up and he is once again breathing on his own.

The case was sent to the Consent and Capacity board whereby Mark Handelman represented Maria Watson in defense of their desire to continue receiving medical treatment for Desmond, based on his previously expressed beliefs.

What is different about this case is that Maria Watson won the case. As stated in the Toronto Star article the Consent and Capacity board - "ordered doctors at Oakville Trafalgar Memorial Hospital to act against their own wishes and provide him with aggressive, life-saving treatment if his health falls into crisis."

What is important about this case is that Desmond Watson had legally appointed his wife Maria to be his Power of Attorney. There was no dispute on that matter. The dispute related to whether the physicians had the right to impose a treatment plan - that consisted of no treatment - on a patient against the wishes and consent of a legally appointed Power of Attorney.

The fact that the Consent and Capacity board sided with Maria Watson is a victory for people, who have significant medical conditions, when their medical condition is unlikely to improve, but who want to receive medical treatment. This case is also important for people who have cognitive disabilities.

This case was also a victory for people who live their life based on a faith perspective. The Toronto Star article on March 20 stated:

"Desmond’s wife and two of his daughters ... insisting the devout Catholic (Desmond) would have wanted to be given every chance at life despite any suffering he may be enduring."

The Toronto Star article quoted Maria Watson as stating:

“I’ve been carrying this thing for so long,” said a jubilant Maria, who plans to celebrate her 70th wedding anniversary with her husband in June. “(Hospital medical staff) gave me hell, lots of sleepless nights, but it’s over. I did it.”

Maria Watson's lawyer, Mark Handelman, stated to the Toronto Star.

“This was a case that basically pitted a person’s values and beliefs against his objective medical condition,” he said. “There’s a substantial obligation to the patient who, at that point, is among the most vulnerable people in our society. How can you be more vulnerable than to be dying and have other people adjudicating your rights?”

The Halton Healthcare Service issued a written statement saying it:

“respects the direction given by the Consent and Capacity Board” and will “continue to work with the patient’s substitute decision-maker for consent to treatment as the need arises.”

It doesn't matter whether you or I would choose to receive medical treatment in Desmond's condition. What matters is whether Desmond would have wanted the treatment withheld or withdrawn? The fact is that Maria clearly explained the beliefs, based pn 69 years of marriage to Desmond, and she defended that he would want treatment to continue and she wanted to fulfill his wishes by continuing to care for Desmond.

As much as this story is a great victory for people wishing to receive medical treatment, the issues are not settled in law. There is currently another case in the courts - the Rasouli case - whereby the doctors for Hassan Rasouli are arguing that it is not necessary for them to receive consent to remove the ventilator from Rasouli because the doctors deem it to be not providing any further benefit. Once again, the problem with these cases is that every case creates new precedents and there are many bad precedent decisions in Canada. The Rasouli case is currently being appealed to the Superior Court.

The article in the Toronto Star concluded by stating:

On Sunday, Maria said medical staff at Oakville Trafalgar told her Desmond could soon be moved out of the intensive care unit after showing steady improvement in recent weeks including a clearing of his pneumonia and removal of his ventilator.

“His face is like it used to be. It’s amazing,” says Maria. “It’s a miracle.”

This case is a great victory and a beautiful love story.

Baby Joseph is in St. Louis - What now?

Now that baby Joseph Maraachli has gone to the Cardinal Glennon Children's Hospital in St. Louis MO, it is important to once again consider why this legal and media battle occurred and why the Ontario government needs to change the Health Care Consent Act.

The baby Joseph case was not about euthanasia.
The Euthanasia Prevention Coalition became involved in the baby Joseph case because the way that the decision was made will affect everyone. Many people have suggested that this was a case of euthanasia, but in fact it was not.

Some people have suggested that to withdraw the ventilator from baby Joseph would constitute an act of euthanasia.

Euthanasia is an action or omission of an act 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 had been withdrawn from baby Joseph, he was likely to die, but he might have survived. If he died, his death would have been caused by his medical condition and therefore it is not euthanasia.

The baby Joseph case was about who has the right to decide.
The baby Joseph case was about who has the right to decide and what is in the best interest of baby Joseph.

The hospital wanted to withdraw the ventilator from Joseph, which likely would have resulted in his death in a short period of time.

The family wanted to bring Joseph home to die 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 breathe on his own, so they could bring him home.

The legal system in Ontario is not fair
A significant problem in Ontario is that the legal system is loaded against families. When a family and the doctor/hospital disagree about the treatment plan for a person, these cases are sent to the Consent and Capacity board for a supposed third-party decision. This is where the inequality begins.

The doctor/hospital have nearly unlimited financial resources to hire a top lawyer who has significant experience in this area of law.

The family usually has limited resources and will often hire a legal aid lawyer or a lawyer who lacks experience in this area of law.

When the Consent and Capacity board sides with the doctor/hospital, often the family will give up, but sometimes they appeal the decision to the Superior Court.

It is incredibly expensive for the family to bring a case to the Superior Court and yet the doctor/hospital has no fear of costs because the health care institution has nearly unlimited legal resources.

Because of the inequity in the legal defense, case after case results in decisions by the Consent and Capacity board that support the doctor/hospital.

The law's inequality has resulted in a growing body of precedent-setting cases that constantly increase the power of the doctor/hospital to make medical decisions against the wishes of the family. This must change.

The Ontario government must change the Health Care Consent Act. It is unreasonable that families are required to spend an incredible amount of money in order to defend their rights.

If doctors/hospitals have access to huge legal budgets that are in fact, taxpayers money, in order to fight families who are simply attempting to make medical care decisions on behalf of family members, then the system should also pay the cost for the family.

Ontario citizens should recognize that the great majority of precedent-setting legal cases have given more power to the doctors/hospital. The rights of each citizen in Ontario to make medical treatment decisions have been eroded. We hope that the energy that has been created around baby Joseph can be used to help other people by changing our health care statutes.

You also need to protect yourself. You can protect yourself by contacting the Euthanasia Prevention Coalition and ordering the Life-Protecting Power of Attorney for Personal care. The cost for this legal document is only $25.00.

Baby Joseph case affects us all

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.

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 of an act 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 a direct and intentional action or omission. Even if the intention is to cause his death, the reality is that his death would not be 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 had a massive stroke and I become incompetent, I am unable to swallow effectively and I have not indicated in anyway 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 the baby Joseph case are not reversed or unless the legislation in the Province of Ontario is amended.

I support the plight of baby Joseph and the Maraachli family and I 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?

Save baby Joseph Maraachli vigil - Monday at 9 AM

On Thursday, I wrote a comment about the decision by the Ontario Superior Court to withdraw the ventilator from 13 month old, Joseph Maraachli. This is not a case of euthanasia but it is an injustice that will effect Ontario citizens because the Judge decided that the decision of the doctors and the hospital is upheld against the reasonable decision of the family.

All the family is wanting to do is bring Joseph home so that he can die in the care of his family.

A group of people who are supporting the Maraachli family are having a vigil for Baby Joseph and his family starting at 9 am on Monday, February 21, at the corner of Wellington and Commissioners in London Ontario (near the hospital).

Link to the Save baby Joseph facebook page: http://www.facebook.com/#!/pages/Save-baby-Joseph/142316562497565

Windsor couple's appeal dismissed to bring baby home

An article by Sonja Puzic in the Windsor Star announced that the Ontario Superior court has decided that the breathing tube that is keeping 13 month old Joseph Maraachli alive will be removed on Monday, February 21; against the wishes of his family.

The case is not about the right to withdraw life-sustaining medical treatment. Link to my previous article.

Victoria Hospital (London Health Sciences Centre) and the family agree that Joseph is dying. The family wants a tracheotomy to be done to allow Joseph to be brought home where he would die in the care of his family.

We must be clear, this is not a case of euthanasia but rather a case of who has the right to decide to make end-of-life decisions.

I really can't understand why the court denied the family the opportunity to bring their child home to allow him to die in their care. I also can't understand why Victoria Hospital in London Ontario would be so heartless as to force this family, who are grieving, to go through the emotional and financial stress of going through the courts in order to be allowed to take their terminally ill child home to die in their arms?

I can't understand how the court would think that "justice" has been done, when a hospital has employed a high priced legal team to fight against a family who are relying on legal aid to defend their rights. This is not only a case of David vs Goliath, but in this case, the court is the second Goliath.

Finally, the decision may have been acceptable, if the Judge had decided that, if another physician was willing to do the tracheotomy, that then it should be done. The reality is that you cannot force a doctor to do a tracheotomy against their conscience.

Once again, if it becomes accepted that decisions by a hospital or medical team supersede that of the power of attorney, then everyone needs to be concerned.

The article stated:

Baby's breathing tube to be removed Monday

A Superior Court judge in London has dismissed a Windsor couple’s appeal of a decision to have their dying baby’s breathing tube removed in hospital instead of allowing the child to spend his last days at home.

Moe Maraachli and Sana Nader took their battle with London doctors to court in hopes their one-year-old son Joseph, who has a severe neurological condition, would be able to die at home, surrounded by family.

The couple appealed a Jan. 26 ruling by the Consent and Capacity Board of Ontario, an independent body that deals with matters under the Health Care Consent Act, which sided with the doctors, agreeing that Joseph’s breathing tube should be removed.

An emotional Justice Helen Rady said Thursday the board’s decision was reasonable, tearing up as she delivered her decision about an hour after the lawyers made their arguments in court.

Joseph’s breathing tube is to be removed by 10 a.m. Monday.

“I do my best for my baby. My son is not a criminal ... to just let him die,” Moe Maraachli said through tears outside the courtroom. “They are taking my baby away from me.”

Maraachli said he didn’t know how he will tell his wife Sana, who was too upset to sit through the day’s court proceedings, about the judge’s decision. He couldn’t think about how he would explain the situation to the couple’s older child, seven-year-old Ali.

Maraachli and Nader lost a daughter nine years ago to a condition nearly identical to Joseph’s.

Joseph has been at London’s Victoria Hospital since October, suffering from severe and progressively deteriorating neurological problems.

His brain is losing function and he can’t breathe on his own or swallow.

After a battery of tests and various examinations, specialists in London concluded that Joseph has no prospect of recovery and is in a persistent vegetative state.

But Joseph’s parents insisted the baby responds to their voices and touch and has been growing over the course of his hospital stay. They wanted doctors to perform a tracheotomy — opening a direct airway through an incision in the trachea — and let them take Joseph home to die.

Doctors refused to perform the procedure because it’s too risky.

The craziest quote in the article is the final quote

Doctors refused to perform the procedure (tracheotomy) because it's too risky.

Why is it too risky, the child is supposedly dying anyway, and after they remove the breathing tube, the child will supposedly die anyway. So what's at issue?

I am convinced that this case is really about deciding who has the power to make end-of-life decisions. The court aooears to be suggesting that the Hospital and the doctors have the power to make end-of-life decisions, even when it is against the reasonable wishes of the family. If this is the case, then the people of Ontario better be ready, because this is worse than supposed death panels.

Parents of dying baby simply want to bring their baby home

By Alex Schadenberg

The family of Baby Joseph Maraachli have been told that their baby will not survive. Baby Joseph requires a breathing tube and the hospital is demanding that the breathing tube be removed, while the Maraachli family have asked that a tracheotomy be done to enable the family to bring Joseph home where he would die in their arms. Why is the hospital and the courts denying the Maraachli family an opportunity to allow their child to die naturally on their terms?

Yesterday, LifeSiteNews asked me for comments concerning the case of Baby Joseph Maraachli. I stated to LifeSiteNews that:

“I have no idea why the London Health Sciences Centre would be putting such a legal and emotional burden upon the Maraachli family. If there are complications related to the tracheotomy, well, the child is supposedly dying anyway.”

“The fact is that this family is living through an emotionally draining experience and all they want to do is love their son with the time that he may have left. Why must the hospital impose their plan of death upon the family?”

Today I received a phone call from Joseph's father, Moe Maraachli. After speaking to Mr Maraachli I can only say that my heart goes out to their family and I hope that a resolve will come to their case soon.

The facts of the case:
Baby Joseph Maraachli has been at the Victoria Hospital in London, Ontario, since mid-October when his parents, Moe and Sana Maraachli of Windsor, found he had difficulty breathing and was losing all color in his face.

Doctors discovered that he suffers from “severe and progressively deteriorating neurological problems,” in the words of a Windsor Star reporter, that there is no hope for recovery.

The doctors petitioned the consent and capacity board to have the breathing tube, the enables Joseph to breath, removed.

The Maraachli family have asked that instead of removing the breathing tube that a tracheotomy be done to allow the family to bring Joseph home where he would die in the loving arms of his family, without choking to death.

The consent and capacity board sided with the doctors which is not surprising considering the fact that Ontario's consent and capacity board almost always side with the doctor.

The Maraachli family is challenging the decision of the consent and capacity board to the Ontario Superior Court.

Eight years ago the Maraachli's daughter died from similar complications; she had a tracheotomy done and died at home. The Maraachli's want Joseph to also have the opportunity to die at home.

My response:
Since when has our society denied the parents of a supposedly dying child the right to allow the child to die at home on their terms.

This is a devastatingly sad case, that has been exasperated by the unnecessary legal battle that is totally based on the question of who has the right to decide.

In a health care system that we are being constantly told, is out of money, why are they expending tax payers dollars to bring a family to court, who simply want to bring their baby home?