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In the public interest, and to correct the enormous amount of false and misleading information that is now in the public domain about the circumstances surrounding the condition and ongoing care of Baby Joseph, London Health Sciences Centre is publishing key facts about the situation to correct the record.
The public does indeed have a “right to know” the truth about this matter so that people can form informed opinions based on fact, not innuendo, speculation or untruths.
While some information in this matter is protected by law as a matter of patient confidentiality, much is now on the public record, including the following:
Baby Joseph was airlifted to a hospital in the USA on March 13, 2011.
He had been in the care of LHSC since October 2010 and has a severe and progressively deteriorating neurological condition.
Court documents, which have been filed and are now a matter of public record indicate that:
- Repeated neurological assessments based on both expert clinical examination and supportive testing (MRI, MRS, and EEG) have been undertaken
- He requires a breathing machine and receives nourishment via a feeding tube through his abdominal wall
- Many attempts have been made to allow him to breathe spontaneously without success
- Pictures and brief videos which have been published do not show his true neurological condition and degree of brain injury, which is severe and progressive
Why not tracheostomy?
LHSC will not perform a tracheostomy on Baby Joseph because it is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat. It is frequently indicated for patients who require a long term breathing machine. This is not indicated for Baby Joseph because he has a progressive neurodegenerative disease that is fatal.
Defamatory allegations re. “euthanasia” and “lethal injections”
Allegations that staff and/or physicians at LHSC might “kill” Baby Joseph are outrageous and defamatory. Legal action to protect the reputations of those against whom such allegations have been made are under consideration. Those who make such allegations do so either out of ignorance of the law, which will not provide a defense, or for their own nefarious motives.
The Consent and Capacity Board of Ontario decision supports child’s best interests
LHSC sought the decision of the Consent and Capacity Board of Ontario on whether or not Joseph’s parents were complying with the principles for substitute decision-making under the provincial Health Care Consent Act in refusing to consent to the proposed treatment plan. The Consent and Capacity Board is an independent body created by the provincial government of Ontario under the Health Care Consent Act. It is not a board of the LHSC and LHSC has no influence or jurisdiction over the Board. It conducts hearings under the Mental Health Act, the Health Care Consent Act, the Personal Health Information Protection Act, the Substitute Decisions Act and the Mandatory Blood Testing Act. Board members are physicians, lawyers and members of the general public appointed by the province.
On January, 22nd, the board released a 22-page decision and reasons for decision in this case. The Board’s ruling states in part, on pages 19 and 20:
"In this matter, the parents were adamant that they wanted JM to live by any artificial means in the hope that there would be recovery. However, they knew that JM would not recover, as expressed by [doctor’s name] and which he said all the other treating physicians concurred. We agreed with the expert evidence of [doctor’s name]. There was no hope that JM would have any recovery. He had absolutely no hope or chance of ever recovering. While we felt a great deal of empathy for the parents, we held that their view was not in any way realistic. MM and SN were blinded by their obvious love for JM and could not view his situation objectively nor were they able to put themselves into his position. After three months in hospital hooked up to tubes and machines, after suffering from the invasion of personal privacy, after suffering human indignities, and with the exacerbated difficulties that would arise because of the tracheostomy, it was time for the parents to say "enough". In our minds, there was no disputing the clear, cogent and compelling evidence of [doctor’s name]. We agreed with [doctor’s name] that JM should be allowed to die with dignity and that the treatment for JM, in his best interests, would be removal of the endotracheal tube without replacement, a DNR [Do Not Resuscitate] order and palliative care."
Ontario’s Superior Court of Justice decision supports child’s best interests
On February 17, 2011, Ontario’s Superior Court of Justice upheld the decision of the Ontario Consent and Capacity Board, that Joseph’s parents were not making decisions on his behalf in accordance with his best interests, as required by law. The Court found that the Board’s decision, directing Joseph’s parents to consent to a withdrawal of his breathing tube, an order not to resuscitate, and palliative care, was a reasonable one. The Superior Court of Justice is the largest superior trial court in Canada.
Lawyer for Baby Joseph supports his best interests
Baby Joseph has his own lawyer. The Consent and Capacity Board ordered Legal Aid Ontario to arrange legal representation for Baby Joseph. In the submission to the Board, Baby Joseph’s own lawyer wrote:
“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.”
Medical experts from outside institutions support child’s best interest
The parents of Baby Joseph, (not LHSC), sought the medical opinion of physicians at the Children’s Hospital of Michigan in Detroit. Physician experts at the hospital wrote as follows: "we do not feel that we have anything to offer Joseph that has not already been given to him under your care” and "there is nothing that the Children's Hospital of Michigan has to offer Joseph that has not already been done for him in Ontario". Toronto’s Hospital For Sick Children was consulted and a leading physician there provided the expert opinion that, "tracheostomy and ventilation would be futile".
The Ontario Consent and Capacity Board ruling and report regarding “Baby Joseph” can be found at: http://www.canlii.org/en/on/onccb/doc/2011/2011canlii7955/2011canlii7955.html