Monday, March 14, 2011

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If the ventilator had been withdrawn from baby Joseph, he was likely to die, but he might have survived.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.


Anonymous said...

Thank you for keeping us informed about this important case. We will continue praying for Baby Joseph and his family and we will also continue getting informed about other life issues. Thank you for all the work you do and God bless you always1 Keep up the good work!!!

Unknown said...

This and other cases are about who has the right to decide what is in the patient's best interests. It becomes unbalanced when those who are ultimately charged with making the final determination have even the support of the legal counsel charged to advocate on behalf of the patient, as was the case with baby Joseph's Legal Aid attorney.

Judicial decisions are basically exercises in logic, an attempt to depersonalize a situation so as to achieve objectivity, lack of bias. But that's not entirely possible, as is evident in this argument from the Legal Aid attorney appointed to argue for Joseph's best interests. I shall first replace words in a key sentence from the lawyer's argument with a logic formula:

>>As B has no values and beliefs P cannot base a decision, for B, based on P's.<<

Assuming the premises are taken as givens (which is debatable, but we'll leave it for now), this argument formula would apply to anyone ("P") who applies their own values and beliefs to making a decision on behalf of "B" (the patient), be they parent, medical staff, judicial arbiters, ethicists, etc.

However, in this case, the lawyer excluded all the latter from his reasoning. In his argument, *only* the parents had *no* right to apply their values and beliefs in making their decision. The implication is that medical experts, judicial reviewers, and ethicists of the provincial Consent and Capacity Board have the right to apply their own values and beliefs to making this decision. Please note the final sentence of the lawyer's argument below:

“The parents have their own views, opinions, values and beliefs. Prolonging Joseph’s life serves them and their needs, but is it best for Joseph? He doesn’t have values and beliefs. He cannot think. He is a baby and for all of these reasons he needs and deserves to have his parents make decisions that put his best interests ahead of their own. As he has no values and beliefs they cannot base a decision, for him, based on theirs. But, in my opinion, that is what they are doing. I do not believe they are assessing what is in his best interest. If they were, I believe the result would be different and their decision would align with the hospital.”

In other words, this is about who has the right to make these determinations. In Canada, doctors are limited as to the number of privately insured patients they make take in their caseloads. This was intended to discourage bias against the poor and those of fewer means in matters of medical treatment and care. The intent is noble, but perhaps it has led to an extreme situation wherein health care resources are strapped financially, so that decisions must be made to withhold the most expensive treatment from those deemed to be hopelessly terminal. It is not outright euthanasia, and it does undoubtedly cause pain to all involved, including medical staff and judicial review boards. Regardless, we cannot couch our decisions in fatalistic logic biased towards those who allocate health care resources.

I will also note that we face similar decisions in the U.S., as those who lack access to health care are routinely refused treatments for lack of ability to pay. For instance, in some states, a hospital has the right to withdraw feeding tubes when a patient's health insurance funding expires and no other payment arrangements are made. At best, the patient's family has the right to seek a facility that will provide charitable care, but if no such facility is found, the patient faces an immanent death sentence by starvation.

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Anonymous said...

I know there are many cases like this that happen frequently in hospitals all over Canada and the US. Very rarely do they go to the Consent and Capacity board to go against the wishes of the family. For this hospital to subject themselves to the firestorm of hate they are experiencing and to endure the costs of fighting for palliation for this baby tells me they truely believe it is the right thing to do. Prolonging this child's suffering just so the parents control exactly where his death occurs seems far more cruel. It is very possible that parents are unable to see this difficult situation from the side of the child simply because they naturally don't want him to die.

Alex Schadenberg said...
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Anonymous said...

Can you please clarify why you would not describe LHSC efforts to remove the ventilator from baby Joseph as euthanasia?
I can understand that not all cases of removing the ventilator can be classified as euthanasia, however, in Joseph's case, removing the ventilator would have "intentionally hastened his death". Due to the fact that none of Joseph's other organs were known to be shutting down due to his condition, being denied his right to breathe would constitute euthanasia, would it not?