Restrictive laws silences grieving parents

Publication ban prohibits naming deceased children, shields Alberta government from scrutiny.
Alberta’s ban on publicizing the names and photos of children who die in provincial care is one of the most restrictive in the country, robbing grieving families of their ability to raise concerns in public about the deaths and sheltering government officials from scrutiny.

About 10 children die in care in Alberta every year, but because of a law that prevents their names and photographs — and those of parents or guardians — from being publicized, the public is denied the right to know who they are and assess whether their deaths could have been prevented.

Basic information about the 145 children who died in care in Alberta between 1999 and 2013 was only released to the Edmonton Journal and Calgary Herald after a four-year legal battle. Still, we can only tell you the names of two of the 145. That’s because their parents applied in court to have the publication ban lifted — a step all parents must take if they wish to speak out about the deaths of their children.

Velvet Martin, who went through the court process, said the ban is evil and “the nemesis of justice.”

“They have failed the child in the utmost way possible and now they are stealing their identity — the only thing they have left,” said Martin, whose daughter Samantha died after being in care. “It’s bad enough to lose a child, but to have it covered up is just wrong and I won’t stand for it.”

With scant information on child death cases, Albertans are left to trust that the government will investigate and correct any systemic problems, yet often the same people responsible for supervising a case lead the review.

The result of the legislation is a blanket of confidentiality over the child welfare system.

Child welfare agencies won’t talk to the media. Several didn’t respond to repeated requests for information about how they protect children and one, citing the province’s privacy act, referred calls to the Ministry of Human Services.

People who work inside the system are barred from speaking publicly about their experiences; even those who spoke on condition of anonymity were afraid they’d lose their jobs.

Government officials argue the ban is necessary to protect the privacy of children and their families; in some cases, a child who dies might have siblings who are also in government care. Children in care are some of the province’s most vulnerable citizens, and provincial authorities feel strongly about trying to protect them.

“I think there is always a balance of values that you have to take into account,” said Human Services Minister Dave Hancock. “One of the values obviously is an open and transparent process so that people can know and understand what is happening and know that things are being handled in an appropriate fashion. The other value is you don’t want to intrude in the personal lives of families any more than necessary, particularly in circumstances like that where they have already suffered significant tragedy.”

In a press conference on Wednesday, in response to the Journal-Herald investigation, Hancock said that the issue of where that line should be drawn will be discussed at a roundtable of MLAs and experts scheduled for January. Hancock announced the roundtable on Tuesday.

The Alberta College of Social Workers supports the principle of the ban for the benefit of the family and any siblings.

“It could cause some definite hardship for the family,” said spokeswoman Lori Sigurdson. “They could be ostracized in the community. It could be a shame thing. Their relationship with the ministry and the worker who is working with them could become antagonistic or more difficult because they feel they have betrayed them.”

Hancock said the bodies that review deaths — including the child and youth advocate, the quality assurance council and the fatality inquiry review board — provide the public with appropriate access to information. He said it’s “not necessarily useful to publish a name and face just for the prurient interest of the opposition or others.”

However, in an interview this month, Hancock admitted he didn’t realize the law went so far as to prohibit parents from talking about their children and releasing their names to the media, and said he would look into it.

“I think families for the most part need to be able to heal and need to have the discussions that they need to heal,” he said.

That’s the argument made by the family of a 21-month-old aboriginal baby who died in a foster home in 2010.

“It is ridiculous. We want to tell our story and we can’t,” the girl’s aunt said. “We’re suffering in silence here.”

A Morinville foster mother has been charged with second-degree murder, but the case has not yet gone to trial. It could be years before the facts of the case and what went wrong are revealed — if ever.

Choking back tears, the aunt said problems with the system must be scrutinized if similar deaths are to be avoided. “Every couple of years, another child is dying in care, and it is usually a native kid,” she said.

Martin, the mother who had the ban lifted on her daughter’s name, said almost every family she has met wants to speak out, but they often don’t know their rights and can’t afford to seek legal advice.

“A lot of people don’t have the fortitude, they don’t have the education, the ability, to come forward,” said Martin, a spokeswoman for a national advocacy group called Protecting Canadian Children.

In her case, she was able to lobby for a fatality inquiry. During that process, she found out that while Samantha’s caseworker had assured her that the girl — who had a number of medical conditions — was getting exceptional care, the caseworker hadn’t seen her for 14 months, nor had she been examined by a doctor in three years.

“I was naive and under the impression that children’s services was doing an internal investigation and were actually going to do something other than cover their ass,” she said. “It was a hard lesson for me.”

Like Martin, Jamie Sullivan went to court to lift the ban on her daughter Delonna’s name — but she’s angry she had to. “If you want to arrest me for talking about my daughter, then arrest me,” she said. “You can’t take anything more from me than you have already. … And I’m not going to have somebody telling me I can’t show her picture. That’s just not right.”

The publication ban law is part of Alberta’s Child, Youth and Family Enhancement Act. It stipulates that “no person shall publish the name or a photograph of a child or of the child’s parent or guardian in a manner that reveals that the child is receiving or has received intervention services.” The penalty is a maximum $10,000 fine or up to six months in jail.

Prior to legislative changes in 2004, the ban didn’t exist. A 13-member task force, chaired by Calgary MLA Harvey Cenaiko and made up entirely of Conservative MLAs and child welfare officials, had recommended the change to government. Cenaiko told MLAs the new provisions were drafted to align with the Freedom of Information and Protection of Privacy Act. No mention was made that the ban remained in place after a child died.

Provincial privacy commissioner Jill Clayton, who wasn’t in office when the law was amended, said she can’t find any record of the government consulting the office for advice or guidance on the issue.

Across Canada, most provinces ban the publication of names of children who are in care or receiving services from the government, but lift the ban or decline to enforce it when one of those children die. Only Nova Scotia, New Brunswick and Quebec have bans similar to Alberta’s, and officials say Quebec currently does not enforce the ban when a child dies.

But in Alberta, despite the minister’s promise to review the ban, the government continues to enforce it.

This month, Alberta’s children services director refused a request from the Journal and Herald to lift the ban on the name of a Samson Cree baby, opposing an application that was supported with affidavits from both the child’s parents.

Being able to publish the names, photographs and personal stories of children who die in care are large factors in bringing about change, experts say. If parents are muzzled, there is no one else to speak for the children, said Robert Fellmeth, executive director of the Children’s Advocacy Institute in the U.S.

“These children have no lobby,” said Fellmouth, a professor of public interest law at the University of San Diego. “They have no campaign contributions. They don’t vote. Their sole asset is democracy, and public sympathy and concern, and disclosure. That’s the sole political card they have.”

Many laws to protect children are named after child victims, he noted. The Amber Alert system was named for Amber Hagerman, a nine-year-old abducted and murdered in Arlington, Texas, in 1996, while Chelsea’s Law in California, which increases penalties and monitoring of sexual offenders, was named after 17-year-old rape-murder victim Chelsea King.

In Canada, there’s the Jordan Principle that stipulates that care be provided for children when they need it and decisions about who is responsible for paying for it be made later. It is named after a five-year-old Manitoba Cree child named Jordan River Anderson, who died in hospital while federal and provincial authorities bickered over who was responsible for his home care.

And in other provinces, the deaths of children in care make headlines. In Manitoba, a public inquiry has put the 2005 death of five-year-old Phoenix Sinclair under the microscope; in Saskatchewan, RCMP are investigating the alleged 2013 murder of six-year-old Lee Bonneau by another child under the age of 12; and in Ontario, an inquiry has been probing the case of five-year-old Jeffrey Baldwin, who died in 2002 after years of mistreatment.

By comparison, in Alberta, when the child and youth advocate writes reports about flaws in the system, he has to make up names for the children. In July, he released “Remembering Brian,” and just last week he issued “Kamil: An Immigrant Youth’s Struggle.” Both are pseudonyms.

Even when a death of a child in care is examined at a fatality inquiry in Alberta, the children and parents are identified only by initials. Provincial court Judge Leonard Mandamin balked at this practice in an August 2007 fatality inquiry report into the suicide of a 16-year-old Tsuu T’ina boy. “The use of initials dehumanizes the tragic death of this young person,” he wrote.

University of Manitoba professor Arthur Schafer, director of the Centre for Professional and Applied Ethics, wonders who the publication law is designed to protect.

“My overarching concern is that privacy is being used as a smokescreen to conceal potential wrongdoing and to prevent the public from getting an accurate picture of problems that may turn out to be systemic,” he said. “Privacy considerations are important, but they aren’t absolute.”

Publication bans by province

British Columbia: The name and photo of a child who dies in care can be published provided information comes from family or other sources.

Alberta: It is illegal to publish names or photos of children who die in care without a court order lifting the ban.

Saskatchewan: The name and photo of a child who dies in care can be published provided information comes from family.

Manitoba: The name and photo of a child who dies in care can be published provided information comes from family.

Ontario: The name and photo of a child who dies in care can be published without restriction.

Quebec: It is illegal to publish the name and photo of a child who dies in care, but the law is not enforced.

New Brunswick: It is illegal to publish the name of a child who dies in care.

Nova Scotia: It is illegal to publish the name of a child who dies in care.

Prince Edward Island: The name and photo of a child who dies in care can be published.

Newfoundland and Labrador: The name and photo of a child who dies in care can be published if information comes from family or other sources.

BY DARCY HENTON AND KAREN KLEISS, CALGARY HERALD AND EDMONTON JOURNAL

Story can be found online here: http://www.edmontonjournal.com/news/Restrictive+silences+grieving+parents/9221675/story.html

Rob Sparrow: talks on eugenics TODAY in Edmonton

Just a quick reminder:

Professor Rob Sparrow will be giving two talks in Edmonton at the University of Alberta on Monday April 8 and Tuesday April 9, 2013. Both talks are open to the public and free! Talks are being held on campus in ETLC (Engineering Teaching & Learning Complex) Continue reading

“Baby M”, End of Life Policy, and the Stollery Children’s Hospital

Some of you may be aware of the matter of “Baby M”, involving a 2-year-old child who was admitted to the Stollery Children’s Hospital in Edmonton, Alberta, on May 25, 2012. She required a ventilator for life support. Despite the parents’ opposition to the withdrawal of life-sustaining treatment, which incorporated their religious beliefs, the Court of Queen’s Bench found that it was in the child’s best interests to terminate life support and, on September 14, 2012, ordered the withdrawal of the ventilator. The Court held that there is a general notion in society that a life dependent upon machines and without awareness is not in the best interests of any patient. On September 19, 2012, a three member panel of the Court of Appeal held that there was no error in principle in the Queen’s Bench decision and the appeal was dismissed. On September 20, 2012, the Supreme Court of Canada dismissed the parents’ application for a further stay. “Baby M’s” ventilator was removed, she suffocated, and died.

 
The parents are appealing to the Supreme Court of Canada to have Canada’s highest court decide important issues regarding termination of life-sustaining medical treatment. This decision of the lower courts and, if leave is granted, the ultimate decision of the Supreme Court of Canada will decide the process that will be used and who will make decisions to terminate life support.

These decisions of the Alberta Courts and how they will be followed in the future may ultimately affect individuals in your organization or your community. Should you believe that you, your organization, or community have a position on these life and death issues that should be heard and considered Continue reading

“A fundamentally eugenic rhetoric”

I have no desire to rekindle the flame of this man’s still unrepentant posture that ending Tracy’s life was a blameless act. My quarrel here is not with a Saskatchewan farmer, or an Ontario mother, or any other horribly misguided parent seeking to end the life of a disabled child. My quarrel is with the clichés and platitudes that both foster and condone a very particular homicidal impulse. It is a preposterous notion that Tracy’s life did not conform to the law of nature that Robert somehow epitomizes.  The simplistic morality of pitting the “law of nature” against the “law of a nation” – the core assertion of Global’s Taking Mercy – must be exposed for what it is: a fundamentally eugenic rhetoric.

Check out Catherine Frazee on Global’s “Taking Mercy”, and on the Latimer case more generally, from whom this paragraph is taken.

Dr. Phil.com Mercy or Murder

Deadly Consequences

Annette says she wants the right to euthanize her severely-disabled children, who are being kept alive only by feeding tubes. What would you do? Then, former model, Stephanie Vostry, says she’s fighting to survive chronic Lyme disease, an illness some believe she may be faking. Plus, chronic Lyme disease hits close to home for a “Dr. Phil” staff member.

Dr. Phil.com.

http://drphil.com/shows/show/1826

http://www.drphil.com/slideshows/slideshow/6834/?id=6834&showID=1826

http://www.drphil.com/slideshows/slideshow/6834/?id=6834&slide=1&showID=1826&preview=&versionID=

http://www.globalnews.ca/taking+mercy/6442597182/story.html

Dr Phil polls the audience

http://www.drphil.com/slideshows/slideshow/6834/?id=6834&slide=1&showID=1826&preview=&versionID=#

Shades of Personhood: A Worry About Definitions of Death for Transplant Purposes

Although brain death, which is an “irreversible cessation of all the functions of the brain, including the brain stem” (see article), has been used as a pretty safe definition of a person’s death, transplant advocates are calling to revive a different definition of death, namely cardiac death or circulatory death, which is “an irreversible cessation of circulation and heartbeat and breathing” (see article).  In such cases, CPR is not performed and after a short wait, organs are removed.  However, the problem is that there is no guarantee that the heart won’t restart by itself, so the question of how long to wait becomes a tricky one.  Some hospitals wait five minutes while others only two.  The trouble with waiting too long is that organs cut off from a nourishing blood supply cannot last very long.  Surgeons in Michigan are starting to place donors on ECMOs (heart-lung machines) even before the donor’s heart stops beating.  This ensures that the organs are not deprived of nourishment, but it also further blurs the line between life and death.

The Michigan doctors say the approach is a blessing. Family members have more time to say goodbye and a chance at getting some solace from their loss.  “They are so pleased that the last act of the person’s life on Earth was to donate organs and save other people’s lives,” Punch said.  Transplant surgeons say the chance to turn a death into an opportunity for life is a godsend. (See article)

Defining death is not as straight forward as it might seem.  Of course, there are certainly clear cut cases.  Taking a stroll through a cemetery reveals hundreds such cases.  However, the moment that marks the exact boundary between life and death is much harder to define.  Perhaps this is because there is no such moment, death being a process of a certain duration.  Technological advancements such as ECMOs, however, can extend this process far beyond the short period it would normally take.  Are such patients essentially in a state of dying, but not really dead or are they essentially alive due to the fact that the process of dying had been interrupted by the machines?

Just because machines are doing the breathing does not mean that the person is dead.  By that definition, artificial hearts or pace makers would make the people who have them into walking corpses.  Also, just because someone is in a coma, does not mean that they are ready to be harvested for organs.  Perhaps an argument for the practice of recirculating blood in order to keep organs nourished hangs on the irreversibility of the donor’s condition.  But again, not only is “irreversibility” not a certainty in all cases, but irreversibility itself does not seem to be reason enough to harvest organs from a living human being.  We don’t generally think that extracting organs from patients in permanent vegetative states is permissible, even if such states are by definition irreversible and if such patients happen to be organ donors.

This is certainly a tricky question, especially since the patients involved are donors who have agreed to donate their organs after they die, but unless their advance directives state that organs are to be extracted while alive as long as it happens at the discretion of the doctors or family, the problem with the definition of death will continue to be an issue.  Citing the number of lives that can be saved by the practice of extracting organs from a living person (even if irreversibly damaged), should not be used as an argument for such a practice particularly since the same argument can apply to extracting organs from any living person (I have in mind the classic objection to utilitarianism here).

I am not entertaining slippery slope worries, but I think that it is important to stress that the subtle details regarding our practices of extracting organs for transplantation should be thoughtfully considered, reasoned through, and explained.  One moral worry I have is that such patients may not be viewed as persons by doctors eagerly waiting to extract vital organs in order to save the lives of other (more obvious?) persons.  Can what the Michigan doctors are doing be done with a genuine air of respect and dignity that is owed to persons?  Perhaps it can, but the reasons for such practices must reflect this respect and dignity.  I am simply not convinced that, at least in all cases, merely focusing on what the family and other patients get out of it constitutes reasons that are saturated with genuine respect for the personhood of the donor.

Canada’s Live Euthanasia Debate Tonight

15 March 2011 Tonight from 8 to Midnight Eastern Time Global News is hosting a live blog on whether it is a good idea for parents to be permitted to kill their children who have severe disabilities. The three-person panel that they have assembled for this are all advocates for euthanasia of people with severe disabilities, including convicted murderer Robert Latimer. Please consider taking part in this, and if you think killing people with disabilities is a bad idea, please say so. Also please let others who care about this issue know about this.  Global’s information about this “Taking Mercy” event can be found here. This debate directly will address the question of “What Sorts of People Should there Be?”

Talking to the Absent?

Dr. Adrian M. Owen, a British neuroscientist currently working at the University of Western Ontario, recently presented his research at the University of Alberta.  The research team at UWO, led by Damian Cruse and Adrian M. Owen, claims to have found a way to test for consciousness in patients utterly unresponsive.  Using an fMRI scan to take images of patients’ brains while asking them to imagine certain things (either playing tennis or walking through a house) as a means of responding “yes” or “no” to questions, revealed, according to Dr. Owen, that at least 20% of patients labelled as being in vegetative states are in fact conscious (at least some of the time), but merely unable to communicate with the outside world that they in fact are conscious.  Because the mental states associated with playing tennis are consistently and ubiquitously correlated with a distinctly different part of the brain than mental states associated with spatial location, the UWO team deemed the “tennis-playing” and “house-walking” thoughts to be perfectly suited to code for such distinct responses as affirming or negating something.

The problem with assessing whether or not someone is conscious is that short of asking, all we have at our disposal is diagnoses made based on behavioural outputs (one such output being an affirmative verbal response to the question “are you conscious?”).  However, assessing the level of consciousness of a patient incapable of outward communication of any sort becomes quite difficult.  According to Dr. Owen, 20% of patients previously labelled as being in vegetative states showed signs of consciousness precisely because, thanks to the fMIR scans and the questioning techniques used by the UWO team, they were able to acknowledge their awareness by correctly responding to questions about their personal lives (i.e. questions regarding the names of a parent, the location of their last vacation prior to the accident, etc.).

Such a breakthrough, according to Dr. Owen, could potentially help clinicians make more accurate diagnoses (he cited a current 45% occurrence of misdiagnosis of patients with severe brain damage) and, perhaps even more importantly, it could help shape policies regarding the passive euthanasia of patients like Terri Schiavo.  Here is a New York Times article directly related to Dr. Owen’s research.

There are several questions, in light of Dr. Owen’s research, that come to mind: Is there a problem with passive euthanasia if a patient like Terri could have been asked?  Was there a problem with it (in the case of Terri) regardless of such a possibility?  What if once assessed as conscious and subsequently asked, a patient expressed a wish to be euthanised, but not passively euthanised because of the long and cruel nature of death by starvation and dehydration?  If 20% of patients in Dr. Owen’s study showed signs of consciousness, could there be more?  What should we make of the moral status of individuals who’s mental lives weave in and out of consciousness or consist of some very faint traces of consciousness?  What “amount” of identifiable signs of consciousness is enough?  Is it appropriate at all that consciousness is, as it seems to have become, the moral threshold between life and death?  There are many interesting questions that emerge from this issue more generally as well as the research at UWO more specifically.  For now, as I continue to digest Dr. Owen’s talk, I just pose some of these questions in their raw and unpolished forms, hopefully to get some insightful comments, concerns, other questions, etc., which will certainly aid in my thinking through such issues.

End of life report of Royal Society of Canada Expert Panel

http://www.rsc-src.ca/documents/RSCEndofLifeReport2011_EN_Formatted_FINAL.pdf

Here a few quotes related to us

“We discussed in considerable detail the arguments against assisted suicide. The evidence does
not support claims that decriminalizing voluntary euthanasia and assisted suicide poses a threat
to vulnerable people, or that decriminalization will lead us down a slippery slope from assisted
suicide and voluntary euthanasia to non-voluntary or involuntary euthanasia. “

Also note their definitions. It makes the proposal goes far beyond what is legal in Oregon and Washington eliminating terminal as a boundary

““Voluntary Euthanasia” is an act undertaken by one person to kill another person whose
life is no longer worth living to them in accordance with the wishes of that person.”
“End of life can be understood as a continuum of events starting with the diagnosis of one or more
serious illnesses or injury”

“The Panel recommends against using “terminal illness” as a prerequisite for requesting
assistance. The term is too vague and would leave the statute or policy open to a Charter
challenge. There is no precise science to providing a prognosis of a terminal illness in terms  specific length of time. Health care providers cannot be accurate enough, and if the statute or
policy does not include a time restriction then the condition “terminal illness” becomes too
broad. For example, a person with Guillain-Barré syndrome will die from her disease, but lives
in the average three years after diagnosis. Further, if the term “terminal illness” is made a
necessary condition in the statute, then it would be under-inclusive; there are many individuals
whose lives are no longer worth living to them who have not been diagnosed with a terminal
illness. They may be suffering greatly and permanently, but are not imminently dying. There is
no principled basis for excluding them from assisted suicide or voluntary euthanasia”

Cheers
Gregor