A child’s death, a legal odyssey

from the National Post, by Joseph Brean, June 22nd, 2009:

When Barbara Farlow stands, self-represented, in a Toronto courtroom this morning to hear a judge’s decision in her $10,000 Small Claims Court action against Toronto’s Hospital for Sick Children over the controversial 2005 death of her baby Annie, there are two equally dramatic possibilities.

Judge Thea Herman is to decide on a request by Sick Kids and two defendant doctors to elevate the case to Ontario Superior Court, with its stricter procedural safeguards and rules of evidence. If Mrs. Farlow wins, the case will proceed as a “small claim,” and two doctors at Canada’s top pediatric hospital will not only have to defend against allegations they deliberately killed a baby because she had a fatal genetic abnormality, but they will do so in a forum designed for minor disputes over unpaid bills, encroaching fences and overhanging trees.

Read the full story here.  For more on the broader context of the story, see the Justice for Annie Facebook group or search the What Sorts Blog.

Vehmas and Sobsey commentaries: now captioned

Below are the short commentaries–now closed captioned–delivered by Professors Simo Vehmas and Dick Sobsey as part of a panel discussion on the theme The Modern Pursuit of Human Perfection: Defining Who is Worthy of  Life.

Bioethical Reflections on Disability, Medicine, and Family Life (Simo Vehmas)

Decisions and Dishonesty in Medicine (Dick Sobsey)

Simo is one of Finland’s leading bioethicists who joined us for the panel discussion, while Dick is one of the world’s authorities on violence and disability and runs the ICAD blog.  The short panel presentations that are the basis for these commentaries–by Wendy Macdonald, Sam Sansalone, and Colleen Campbell–can be heard and viewed (now that they are also closed captioned)–in this post, which also contains more information about the event as a whole.  These should be useful to some of you for teaching, for community discussion, or just for private reflection on the ways in which eugenic or newgenic thinking can be found immersed in ongoing medical practices and cultures surrounding the treatment of people with disabilities.

Next up: the audience-panel interactions, which I’ll post in the next week.

On the new growth attenuation paper

Thank you for your wake up call, Spirit of our time, and thank you also for inviting me to write here.

I share the concerns about the new growth attenuation paper that Spirit of our time expressed in his latest post. I also find his advice to read carefully and slowly totally relevant not only when you read his version of the abstract but when you read the original abstract as well.

There are some particular expressions that worry me a great deal, such as “the scientific rationale,” “informed responses to key clinically relevant questions,” and “potential clinically meaningful benefits of growth-attenuation therapy.” The implication here seems to me to be that this is a medical issue for doctors to consider scientifically, not for the court or the disability rights advocates to interfere with. That reminds me of Norman Fost’s pet theory that the court should have no say in medicine.

I also wonder if they are trying to ward off criticisms from disability studies or disability rights activists by confining the issue within medical argument. But then it also makes me wonder, as Spirit of our time has pointed out, what the working group discussion was all about . The WG had their first meeting in April 2008 and had revised draft (of whatever it might be) circulated for comments in December 2008. I wonder if the WG members were aware, while working as a group, of the fact that three of them were writing a paper independently to maintain that it is a safe and beneficial therapy to be recommended as one of the future choices for profoundly disabled children when they are around 3.

I’m trying to post a list of links to information about Norman Fost in my blog as soon as possible. But for now, you can get a quick idea of Norman Fost’s views by visiting the 2007 Pediatric Bioethics Conference page on the Seattle Children’s site and watch the webcasts of his presentations.

On Justice for Annie Farlow

The following letter was sent today regarding the case of Annie Farlow. For more info, see www.anniefarlow.com and the Facebook group Justice for Annie. Those who share the concerns expressed in the letter, especially those in Ontario, are encouraged to contact their MLAs or the Premier about the case and express your concern.

The Honourable Rick Bartolucci
Ministry of Community Safety & Correctional Services
25 Grosvenor St,18th Flr
Toronto ON M7A 1Y6
Tel : 416-325-0408     Fax : 416-325-6067
Toll Free: 1-866-517-0571           2nd June, 2009.

Dear Mr. Bartolucci,

I am writing to you directly in the matter of the case of the death of Annie Farlow, a case with which I believe you are familiar. I am a university professor, a Canadian citizen, and was formerly a resident of Ontario, when I taught at Queen’s University in the 1990s. I have become familiar with many details from the case through my work as the founder and coordinator of the What Sorts of People Network, a large-scale, Canadian-based network of about 80 scholars, teachers, and community organizers with a focus on issues in which disability, health, and technology intersect. I have read and reviewed much about the Farlow case, including much of the correspondence that has passed between the Farlows, the hospital, and government offices, including your own. I have grave concerns about the case, some of which directly concern your Ministry, although they are not yet concerns about the Ministry as such.

While there are many aspects of the treatment and death of Annie Farlow in the country’s leading hospital for sick children that I believe should be of concern to the average Canadian citizen, my reason for writing is to convey to you directly my view that the position that your Office has taken regarding both the decision not to compel the Office of the Coroner to provide the Forensic Audit Report, and the subsequent decision to decline the parents’ request for a disinterment of their daughter’s body, should be reconsidered.

This is a case in which there are major and significant doubts about the cause of the death of an infant while under the care of the hospital, about the subsequent integrity of coroner’s own report, and about what appears to be an unlawful refusal by the coroner to provide information to which the family is lawfully entitled (section 18.2, Coroner’s Act of Ontario).

Charles Smith, the Toronto Hospital for Sick Kids, and the Coroner’s Office

h/t to Harold Levy at The Charles Smith Blog, where more detail can be found:

Peter Kormos, justice critic for the NDP in Ontario, recently delivered a scathing indictment in the Ontario Legislature of the handling of the case of Dr. Charles Randal Smith, a paediatric pathologist (posing as a forensic pathologist) whose actions led to the wrongful imprisonment of many innocent people in relation to infant deaths that he investigated. Here is an excerpt–the story, as one might suspect, is not just about Smith:

This guy Smith, for 24 years, while working for the Hospital for Sick Kids just down the road, lied and bungled his way through countless prosecutions of people charged with injuring and, more tragically, killing children, babies-countless unjust convictions. We’re not talking about people who are sentenced to a couple of weekends in the local lockup; we’r e not talking about people who are sentenced to house arrest; we’re talking about people who, almost inevitably when you murder a child, are sentenced to penitentiary time, where they do what is called colloquially “hard time.” Let me tell you, when you’re a baby killer, you’re pretty darned close to the bottom of the ladder. Even in protective custody, you’re a victim. Some of those people have been successful in having their convictions overturned. None of them will ever be successful at having their losses restored.
What bothers me significantly is how Smith could flourish-he did for 24 years. Was his stellar batting record not of some concern to crown attorneys? Was his stellar capacity to indict and convict people accused of killing children not of concern to the police officers themselves, for fear that they had picked the wrong person to be charged? Was Smith’s capacity to find criminal culpability with the named accused not of concern to judges?

Smith didn’t work in a vacuum. What about the coroner?

Thinking about Incest 6: Westermarck on Parental Love

In the last post on Thinking about Incest, I left off by introducing attachment as a possible mechanism for the Westermarck Effect. While so far as I know, Westermarck did not discuss attachment under that heading, in Chapter 17 (“The Killing of Parents, Sick Persons, Children, Feticide”) of volume 1 of The Origin and the Development of the Moral Ideas (1906), Westermarck says several interesting things about parental love, and the relationship between habit, custom, and morality. In discussing infanticide amongst “uncivilized races” and “the lower savages”—the language here a reminder of Westermarck’s immersion in the academic culture of his day—(p. 402), he says

Radio Interview on Annie Farlow

Annie Farlow

Tune in to Geoff Langhorne ‘s DisRespect on 93.3 CFMU at McMaster at 12 noon EST on Thursday 14th May to hear a one hour radio interview with Barb Farlow and Rob Wilson on Annie’s case. http://cfmu.msumcmaster.ca/

You can get background on the Farlow case from

• the Facebook group Justice for Annie
• previous What Sorts posts on Annie’s treatment, death, and subsequent events here
• Annie’s website

Please spread the word. The show will be available through the station archive at the above site a few days after it runs. Click “Programming”, then find the show by day and time, then download that particular show.

Civil Rights at Risk in the Annie Farlow Case

For background to this case, see the previous What Sorts posts linked to in this post. You can also join the new Facebook group Justice for Annie to support the Farlows and follow developments.

CIVIL RIGHTS AT RISK: ACCESS TO JUSTICE

Subject: Farlow vs. Hospital for Sick Children et al.

Description: Motion by Hospital Threatens Access to Justice for Infant
Born with Genetic Condition whose Death Involves Disturbing Circumstances

Event Date and Location: May 7th, 2009 at 10:00-12:00 am, at 393 University Avenue, 10th Floor, Toronto, Canada.

The Toronto Hospital for Sick Children has called a motion to request for an order to transfer a $10,000 Small Claims file to Superior Court, where the cost of litigation would be utterly prohibitive. The reason the Hospital has stated the request for the transfer is that the issues involved in the Claim are “serious,” “complex” and are such that “the Hospital’s reputation is in jeopardy.”

The Farlows cannot find a lawyer to defend the case on a contingency basis due to the fact that the costs would very likely exceed any potential award for a child such as Annie with predicted disabilities. Should they lose the Motion, they will have to drop the Claim.

Annie Farlow, Sickkids, and an Ontario Human Rights Commission hearing

Regular readers will recall the case of Annie Farlow from posts we’ve done over the past year (linked below the fold). Today Annie’s family issued a media release following a preliminary hearing at the Ontario Human Rights Commission concerning a claim against the very same hospital at the centre of the Baby Kaylee case that occupied the Canadian media last week. You can see today’s CTV coverage of the story by reporter Reshmi Nair (“Parents aim complaint at Sick Kids”) at their site, and you can read the media release from the family below the fold.

CACL Press Release on Kaylee Wallace

FOR IMMEDIATE RELEASE

April 9, 2009

Family’s Heartbreaking Plight Sheds Light on Deeper Issues

From Day One it’s been all about what Kaylee Wallace won’t do. She won’t go to school, she won’t walk, she won’t live a typical life. One of the first suggestions was not to feed her. It seems there has been very little about what she might do, what she could become and that her life, while following a different path, could be just as fulfilling, just as wonderful and just as valued as any other. The take away message has been that a life with a disability is a fate worse than death.

The Wallace family, and many that have come before them, have found themselves in a heartbreaking predicament. They are told by medical professionals and experts that their daughter’s life is in immediate peril. That efforts to support her are futile, that the family should leave her be and let her die with dignity. Families, under pressure, often sleep-deprived and in the throes of emotional trauma rely on their trusted doctors to provide them with unbiased information. They rely on their doctors to treat their children, not just with dignity and respect, but to treat their medical conditions. Life-and-death medical decisions are being made on a particular perspective of quality of life. If your child is not expected to follow a particular path perceived by others as typical development then the quality of their life is brought into question.

Kaylee Wallace: Disturbing Coverage and Unasked Questions

Many of you in Canada at least, like many of us in Canada, will have been following the deeply disturbing story of “Baby Kaylee”, which has been the lead story on CBC’s The National for the past three nights. The ever-perceptive folks at Not Dead Yet have posted the following probing blog on the story, and the story of the story, which should be of interest for those who know and don’t know about either. Below is a taster of the post, which you can get in full from the Not Dead Yet blog itself.

There are so many disturbing and tragic aspects of this case itself (though not quite those that the CBC and other major outlets for news have highlighted), and in how it has been picked up and covered, that it might be hard to know where to start. Well, by reading on, for a start:

Once in awhile, a story hits the news that is so heartwrenching and tragic that it seems rude and cold to ask questions – let alone challenge – elements of the story. Often, this is exactly the time that hard questions should be asked.

Right now, there is a life-and-death drama playing out at the Sick Children’s Hospital in Toronto. Kaylee Wallace, who is two months old, is receiving palliative care at the facility. On Tuesday, there was an attempt to harvest her organs under the “Donation after Cardiac Death” (DCD) or “Non-Heart Beating Donation” (NHBD) protocol. In this protocol, an individual’s organs are harvested soon after the heart has stopped beating. The organ harvesting is called off if too much time elapses between removal of a ventilator and stoppage of the heart.

On Tuesday, Kaylee continued to breathe after being taken off a ventilator. The problem was that she stayed awake – since her breathing only stops when she sleeps. (If you think you know a name for that condition, read on)

Many

Chromosomal microarray analysis, newgenics, and Annie Farlow

A recent news item in the Canadian Medical Association Journal by Roger Collier, Prenatal DNA test raises both hope and worries, discusses the relatively new prenatal diagnostic technique of chromosomal microarray analysis, contextualized by the case of Annie Farlow, which we have discussed in the posts What Sort of Death for Annie? and Deathmaking by medical neglect. Some think that Annie’s fate was sealed by her diagnosis of trisomy 13, not so much because of the nature of the condition itself but because of the downstream effects that labeling had on the medical treatment she received (or not). As the article says,

In August 2005, Annie, not yet 3 months old, suffered a respiratory attack and was admitted to hospital. She died within 24 hours. The official cause was “complications of trisomy 13,” but Farlow and her husband still don’t know the details, despite years of inquiry. They do know, however, that someone issued a do-not-resuscitate order without their consent. “I feel that the genetic testing ultimately determined her fate,” says Farlow, who lives in Mississauga, Ontario. “She was treated as a syndrome. She wasn’t treated as a child.”

Philosophy, Eugenics and Disability in Alberta and Places North – Simo Vehmas Part 3

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the third part of the presentation by Simo Vehmas (The first part may be found here and the second here).  Simo’s presentation is titled “Preventing Disability: Nordic Perspectives” and it focuses on summarizing past and present attitudes towards eugenic practices in Nordic countries, principally Finland, with special attention paid to attitudes and ideas around eugenic practices of preventing disability.

Part 3

Highlights: the consequences of the distinction between analytic and continental philosophy for doing ethics in Europe, embarrassing statistical analysis of money saved from selective abortion, directed and coercive nature of prenatal genetic testing, strength of ideas of reproductive freedom and autonomy, critical assessment of Finns on “useless” philosophy, secret recipe for arousing passion in Finns.

A transcript follows the cut.

Philosophy, Eugenics and Disability in Alberta and Places North – Simo Vehmas Part 2

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the second part of the presentation by Simo Vehmas (The first part may be found here).  Simo’s presentation is titled “Preventing Disability: Nordic Perspectives” and it focuses on summarizing past and present attitudes towards eugenic practices in Nordic countries, principally Finland, with special attention paid to attitudes and ideas around eugenic practices of preventing disability.

Part 2

Highlights: Lack of knowledge by sterilization victims about what was happening, total number of Finnish sterilization victims in, illusion of voluntary sterilization, logical flaw of “playing the Nazi card”, strategy for effective discussion in the face of embarrassment, and prevention of disability vs. providing autonomous choice.

A transcript follows the cut.

Philosophy, Eugenics & Disability in Alberta and Places North – Dick Sobsey Parts 3 & 4

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Videos will be featured on average twice a week, roughly every Saturday and Wednesday.

To download the full description of the symposium please click here.

We began this series with the first two parts of the presentation by Dick Sobsey, titled “Varieties of Eugenics Experience in the 21st Century.”  This presentation amounts to a summary of various kinds of eugenic motivations, justifications, and practices from the 19th century to today with a good collection of anecdotes and trivia.  Parts 3 and 4 are highlighted in the videos below. Transcripts are also posted below.

Part 3

Highlights from part 3 include: criticism of Jukes as an assault upon the poor, best cement in the world, origin of the underground records for all the new york banks, continuing the Juke heritage, Dugdale’s findings, Oliver Wendell Holmes Sr. on Sterilization, measures of intelligence and the Flynn Effect, and stopping people from having children easiest through institutionalization.

Philosophy, Eugenics & Disability in Alberta and Places North – Dick Sobsey Parts 1 & 2

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Videos will be featured on average twice a week, roughly every Saturday and Wednesday.

To download the full description of the symposium please click here.

We begin this series with the first two parts of the presentation by Dick Sobsey titled “Varieties of Eugenics Experience in the 21st Century.”  This presentation amounts to a summary of various kinds of eugenic motivations, justifications, and practices from the 19th century to today with a good collection of anecdotes and trivia. A transcript of both parts follows the fold.

Part 1

Highlights from part 1 include: shift from religious to scientific view of the world; quality of life; social Darwinism vs. biological capitalism.

The Modern Pursuit of Human Perfection: The Full Story

Below are all 13 posts from our Modern Pursuit series of posts, deriving from the public dialogue that we cosponsored with the AACL and the CACL at the University of Alberta in October 2008. The public dialogue began with some opening comments from our cosponsors, continued with short presentations from our community member panelists talking of their personal experiences, and was rounded out by a series of interchanges between audience and panel. All videos now contain transcripts (thanks to Jackie Ostrem for completing the work needed here: update 21 June, 2009: all now are closed captioned, thanks again Jackie!), and the videos are also available on YouTube. Comments on the blog on any of these posts is still welcome, but we also hope that you’ll find these of interest and use down the track for individual reflection or group discussion.

Thanks to all participants: Anna Macquarrie, Bruce Uditsky, Dick Sobsey, Wendy Macdonald, Sam Sansalone, Colleen Campbell, Anne Hughson, and Simo Vehmas. And thanks to Grant Wang and Lee Ramsdell at the Arts Resource Centre at the University of Alberta for the filming and post-production work, and John Simpson for organizational assistance.

Introduction

My doctor, my child

Living with trisomy 13, part I

Living with trisomy 13, part II

When disability meets social welfare

Bioethical reflections on disability, medicine, and family life

Decisions and dishonesty in medicine

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

Good people in medicine and the disconnect

[This is the tenth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here.]

Here Michael Shaw draws on his dual experience as a child in a medical family and as a parent of a child with Down Syndrome, and as a parent advocate working with the Canadian Down Syndrome Society to ask a question about how doctors and others often fail to connect with the concerns of parents of children with disabilities. The video is in two parts; Part 2 beneath the fold, with transcripts for both videos there (thanks to Jackie Ostrem!). A response from Dick in Part 1, and responses from Sam and Wendy in Part 2. If you have trouble listening to or viewing the videos here, you can also listen to or view them directly at Youtube: Part 1 and Part 2.

Vulnerability, trust, and confrontation

[This is the ninth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; Part 1, containing the video clip, was just posted.]

Here is Part 2 of the response to the question about vulnerability, trust, and confrontation. Sam talks about the variation in responses he has experienced from both bioethicists and doctors, and links some of these responses to a continuation of eugenics by other means. Colleen supports this, and brings us back to reactions from one’s own family. Transcript below the video.

Decisions and Dishonesty in Medicine

[This is the seventh post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday–this one, since it’s brief, is a freebie! For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

Here Dick Sobsey gives some brief reflections on the panel presentations from Wendy, Sam, and Colleen that focus on parental autonomy, decision-making, and medical guidance. Parents believe that they have the right to make decisions about their present and future children, and that they do in fact have that right is part of the medical norm, as Simo Vehmas noted in his recent reflections here. But are they in fact given a real choice here? The stories we’ve heard so far, suggest some of the constraints on these choices. Maybe some of you have other stories or opinions to share? A transcript of the video follows the cut.