DisRespect interviews with Barb Farlow, Sam Sansalone

I’m re-posting this May 15th post, since Disrespect has just re-run an interview with Sam Sansalone about his daughter Katya from earlier this year. The directions below will allow you to get to Sam’s interview, which was re-run on 22nd October; the podcast should be up there for the next few weeks. The two are related not only in that the children have the same genetic condition, but were also treated in similar ways by the same hospital.

Below is the original blog post on the interview that DisRespect did in May 2009 with Barb Farlow and me on Barb’s daughter, Annie Farlow; it includes a transcript of the interview. If you want to see the footage of the talk that Sam gave, referred to in his interview, you can go to the post The Modern Pursuit of Human Perfection: The Full Story and then click on the two Living with Trisomy 13 posts within it. These videos are all now closed captioned and also include transcripts, thanks to Jackie Ostrem


Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death. You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s a closed group, which means you have to apply to join it), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

  1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)
  2. Click the button near the top left side of the screen that says “PROGRAMMING”
  3. Click on “DisRespect” in the programming grid that appears; you’ll find it at 12pm in the Thursday column
  4. A pop-up window will appear. In the left column, just click “14.05.2009” and the program will start playing. (If it doesn’t, you should be prompted to download some free software that takes less than a minute to download.) DisRespect starts a couple of minutes into the broadcast.
  5. If you would like to downoad the program to your own computer (useful for skipping past the intro and the compulsory musical interludes) then just click “14.05.2009” and once the program starts playing there will be a new box in the bottom of the pop-up window with a download link that you can simply click (Note that the file is 60MB).

An unofficial transcript of the broadcast follows:

Unofficial transcript from DisRespect, with Geoff Langhorne, 14th May, 2009

Geoff: DisRespect welcomes Rob Wilson, who is a professor at the University of Alberta in philosophy is it Rob?,

Rob: ah, that’s right, Geoff.

Geoff: and coordinator with the What Sorts of People Network in Alberta, and Barb Farlow, who was a mechanical engineer and is now an advocate on behalf of people with disabilities in Ontario. Welcome to the show.

Barb: Thank you.

Rob: Thanks for having us.

Geoff: Ok. Barb, this concern that brought you together with Rob started with an incident in your life that our listeners might not be aware of. Do you want to give us the once over lightly?

Barb: Sure, I’ll give you the brief version, Geoff. My daughter died in August of 2005 within 24 hours of arrival at the Hospital for Sick Children. Annie had a genetic condition that was related to disability. Generally the condition comes with very serious anomalies that are considered lethal, such as severe brain defects. However, like all genetic conditions there are a wide range that exist, and my daughter was mildly afflicted. We knew that we would have difficult decisions to make before she was born and ironically we had many meetings at the hospital, specifically to discuss policies and eligibilities for surgery, and ethics and what would happen if this and what if that because we really needed to understand the medical system so that we could properly manage our daughter’s heath within its confines. Once we were assured of the policies, her rights, the ethics, the matter in which any ethical disputes or dilemmas would be resolved, we placed our entire trust in the system. We knew, we felt completely confident that we would, together with the doctors, in partnership, we would arrive at the best decisions for Annie. When she died within 24 hours, at that point in time we had been led to believe, because the intensive care doctor had described to us a surgery that Annie likely would not survive, and we certainly did not want her to suffer unnecessarily. And so we said no to that surgery, and she died. And I guess you might say that it was a mother’s instinct. Something just wouldn’t let go, something said that the logic didn’t fit. When we arrived at the hospital they said she had pneumonia and her trachea was fine and then 24 hours later she needed a severe operation on her trachea and she didn’t have pneumonia. And although I’m not a nurse or a doctor, there was something just lacking in the logic of that.

Geoff: Oh yeah.

Barb: And so what we did was we acquired the records and had a friend, who was a nurse practitioner start to review them, and that’s when all the pieces—it was like a domino—first ting we discovered was that a “Do Not Resuscitate” order had been entered long before we had provided consent. And even then that was a devastation to us. From there we just tore the thing apart, from start to finish. What happened? What tests were ordered? And so on. So ultimately what we have come to discover is that two lethal doses of narcotics were withdrawn from the narcotic cabinet under my daughter’s name. Both without a physician’s order.

Geoff: Really?

Barb: And both are not shown as any being wasted or returned to the cabinet. The final medication report for the final nursing shift, which was three and a half hours long, is inexplicably missing. And this is a direct entry, direct electronic system; it’s not a piece of paper that could fly on to the floor.

Geoff: Oh!

Barb: So that was very concerning, and so the more we probed, the more concerns we had. So ultimately, after allowing everybody ample opportunity to explain what happened, to describe to us that our daughter’s death was inevitable, we actually came to discover that the surgery that had been described to us had absolutely no diagnostic basis, and the physician said that it was a guess that she needed that….

Geoff: That was the surgery you refused?

Barb: Yes, that’s right, that’s right. And in fact there were many things that could have been wrong, and some of them were very minor to treat. So we were very shocked, but because we had incredible faith in the hospital, we, we felt that it was appropriate to give them every opportunity to explain what happened and to collaborate with them … with a resolution … to improve the care for other sick children. I mean ultimately we knew that we couldn’t have our daughter back. We didn’t’ want to enter into any battle with anybody, and be left bitter and angry for the rest of our lives. And we felt that if we could put that aside, and know that something had clearly improved at the hospital, then that would be the best outcome for us, in that situation, which was a difficult position to come to, but it was a rational one for us.

After a year of working with the hospital, we could see that it was, there were token measures, there was an apology, there was an internal review, but we could see that they were not making the response that we wanted to see. So we went to the coroner, and the coroner did a review, and determined that the care provided in the final 24 hours was not an appropriate form of care and that [Geoff: Oh?] it was by no mean certain that Annie needed this stressful surgery, or prolonged intubation. Unfortunately, the coroner refused to answer any questions. The coroner’s office is not there to shame or blame or to point fingers, rather to provide recommendations to reduce the likelihood that someone will die in a similar manner.

Geoff: Why would they not answer questions?

Barb: Well, because it would have pointed a finger, and I guess cause blame to be put on somebody’s name.

Geoff: I guess it seems that there’s a second agenda at the coroner’s office. Not only are they not to point blame but they’re not to reveal facts that might indicate blame.

Barb: Well, that’s exactly right. Yes.

Geoff: Ok, …

Rob: Although it’s true that part of their job is to provide certain kinds of facts and part of what interests me in this case is that it appears at least that they haven’t provided the facts that they are legally required to provide, which I find disturbing.

Barb: That’s right. What Rob’s talking about there is that we discovered in the last few months that we had a right under the Coroner’s Act [of Ontario] to the … they’re called “findings of fact” that determine the cause of death. So if an autopsy has been done—no autopsy or toxicology has been done for our daughter, which is another little story in itself—they would, the findings of facts would be to include these reports. But as there are not such reports for our daughter, the only finding of fact was that they deemed her death to be a “natural death” was a report called a “forensic audit”, which was carried out and supervised by the coroner, by the coroner’s office. And we were, it was in the report by the Pediatric Death Review Committee, that this report provided evidence that no active steps were taken to cause Annie’s death. So recently we asked for a copy of this report that essentially exonerates the hospital from any suspicion of involuntary euthanasia.

Geoff: How recently?

Barb: Well, the first request was about two and a half months ago, [Geoff: Alright] and the response was that we should ask the hospital for that [Geoff: Alright]. So we asked the hospital, and the hospital said that it was a privileged document and they couldn’t provide it [Geoff: Oh], so we went back to the coroner and asked again, and he would not provide it. So we continued to ask questions and the most recent attempt and probably the last one, has several people copied, including the media, and again we asked for a copy of the forensic audit, to which we have a right, and we also asked one question: was Annie given any Fentanyl? Which is an extremely strong narcotic, 80 times stronger than morphine in the final three and a half hours of her life. And the coroner said that this office cannot answer any further questions. There’s nothing more we can do for you.

Geoff: And fentanyl was the narcotic that was signed out in Annie’s name?

Barb: Yes, [Geoff: Oh] Annie was never prescribed any fentanyl, and a lethal dose was withdrawn [Geoff: Yeah]. That’s very significant because fentanyl is a very stable substance that can be, according to the experts who I spoke with, detected in a body that is exhumed many years later. [Geoff: Oh, ok] And that remains a possibility, a grim one, and certainly one that we don’t want to undertake, but it would seem that the truth could be revealed.

Geoff: Yeah, yeah. Well, it sounds to me, doesn’t it to you Rob, as if she has a lot more than a human rights case. She’s grabbed this by the smooth handle by making a human rights case out of it, and I guess expense mitigates it against other ways. Have you raised this with the police Barb?

Barb: Yeah well, you see the trouble with the police department is the coroner’s office is sort of the wall between the patient or a family member with such a complaint and the police department. So if the coroner says that all is well then you have a major wall to cross over. So what we have here is a coroner saying that all is well, but then refusing to provide the evidence that supposedly exists. [Geoff: Yeah]

Rob: So there’s two different sorts of things here that are easy to mix up. One is sort of what did happen, and then the other is the story about what did or didn’t happen. I’m, I think, equally concerned about both of those. I’m concerned about the lack of transparency in the latter case of just, initially in terms of saying that there is going to be a lot of cooperation, a sort of soft apology for “oops”, you know, lack of communication, whereas I think that there was actually a lot more than a lack of communication. That just calls into doubt a lot, the trust that you place in medical institutions and personnel and raises concerns about what is going on. Why don’t people want to reveal the story? Why can’t we find out what really happened? Because without that, we don’t really know how to answer the question of how serious the apparent transgressions are in this case of either explicit laws or at least certain understandings between patients, trustees, and doctors and hospitals.

Geoff: Yeah, yeah.

Barb: It’s that inability to answer questions that is the first, I think, danger sign. And to this day we don’t know why our daughter died, or why nobody tried to help her. And what we’ve discovered—we had an expert review done on the medical records by a neonatologist in Ohio—and what he revealed was that our daughter’s blood work became critical on about the 5th day. Critical is pretty dangerous. It means that the lab had called the doctor and said, “Your patient’s blood work is critical” [Geoff: Oh, alright]. This happened continually I think there were eight or nine tests over Annie’s life and a senior pulmonologist over at Sick Kids who we also came to know also suggested non-invasive tests. They were concerned about a tracheal condition of some sort [Geoff: Oh yeah?] and yet we knew nothing about it. We were certainly given to the understanding that Annie was being treated the same way as any child. And in fact the records are filled with comments such as “Diagnose this later if symptoms persist”. Well, when you’re symptoms are critical, there’s really only one step further to go, and that’s “in extremis” and that’s exactly what happened in the final 24 hours. So it’s very clear to us that there was a specific plan of withholding treatment all the way along.

[Short musical break: “Shame on you!”, and reintroductions]

Barb: The reason we’re particularly concerned, I think, is that we felt that we had an excellent relationship with the staff. We knew and trusted Annie’s primary physician at Sick Kids. She [Annie] was there for the first 6 weeks. We knew and trusted him very well.

Geoff: Do you still think well of him?

Barb: [laughs] well …you know

Geoff: Everything’s come into question now, heh?

Barb: Something … here’s how I feel about it. I believe that you develop a culture and a system. For one doctor to differ from that culture is very difficult, very, very difficult. And especially if it’s the surgeons who are saying we are not treating these kind of children, that makes all the doctors who are, I guess, lower in the totem pole, …

Geoff: They’re just ordinary doctors …

Barb: yes, there’s really nothing they can do. So some people say that I’m being very generous, but I like to think that this doctor that we knew and trusted so well was a victim to a certain degree. One of the things that happened in the final 24 hours that was really distressing was that Annie had a, shortly after arrival she had a respiratory crash, and that’s when, if you watch the shows, one of those medical shows, that’s when people come running with crash guards … it means she was having trouble breathing. In our case we had one person come along, it was the respiratory therapist, and she started to bag Annie to in order to keep her oxygenated. And our trusted doctor came in and took a blood test, and left. And we just stood there, and stood there and we were torn between running out into the hallway and screaming for help, which was certainly a bizarre thought because here we were, at one of the best children’s hospitals in the world and this would be a totally irrational thing to do … and at the same time we trusted our doctor completely and so we stood there. And it is in the records that it was over an hour later before our primary doctor called the critical care unit. And this is what they call, maybe you’ve heard it before Geoff, it’s called the “slow code” in the business. It means when someone doesn’t really want to help somebody and they go through the motions. You know …

Geoff: And this is the doctor that you grew initially to trust …

Barb: Yes. And my belief is that the critical care said “We’re not, no, we’re not taking your patient”, and he was stuck. That’s my belief. And if all the work we’re doing if all that it ever does is to prevent this from ever happening again—that a parent, or parents would stand there and watch their child slow-coded like that, that’s a terrible, terrible things to happen.

Geoff: Well, Sick Kids have had these issues in the past, hasn’t it Rob, I mean, you remember the Susan Nelles case in the ‘80s, and they exonerated Susan Nelles and I don’t know if they ever found the root of the problem, did they…

Rob: Yeah, and more recently … no, that one’s quite a long time ago, but certainly more recently in your listeners’ minds will be the case of Sam Sansalone, who was on your show a few weeks ago I think, dealing with very much the same kinds of issues. I mean, every child’s position and condition is unique but there are certain eerily similar details that are shared across those, the two cases, and I know that again one of those concerns the shift from complete trust, thinking, “Well, the doctors are really on top of this. They really have our best interests…” to wondering “Hang on, what’s going on here?” You know, I think Sam told that story of the monitor, and again, it’s this implicit little thing that you might not notice, and all of a sudden you have to turn around and say “Hang on, there’s something else going on here” and one thing is to start to think that there are evil people here doing evil things. And I tend to agree a little bit with Barb that that’s probably not what’s happening. There are people who are part of a culture that operates in a certain sort of way, and I think one of my concerns is that we have a certain sort of complacency in society more generally that everything is just going smoothly–and this is one of the leading hospitals, and these are people with you know high ethical standards—and all that may be true but it doesn’t … if there’s an underlying culture that effectively rations health care, that doesn’t value infants and children with various disabilities or diagnosed conditions in the same way that they would value so-called “normal children”.

Geoff: So you think that there is a rationing of care that may be going on here?

Rob: Well, I think that is very likely, whether it is part of an explicit policy, or whether it is just an implicit part of the culture, I don’t know. But one telling thing is that when I started up this recent Facebook group, Justice for Annie, which is easy to find on Facebook, and has a number of members now in the last week or so to focus on this case, I had a private response from a friend of mine who is on both sides of things, who is a doctor, is a specialist, and who has also had experience of losing a child early on through her own consent of withdrawal of treatment, which she said was a very hard decision to make. But one of the things that she said about this case, without knowing much about the details of the case, but one sort of reaction was, that you know, well sometimes parents sometimes have to let go and move on. So she’s obviously partly speaking about her own experiences. But the other telling comment was exactly a comment about the reality of there being limited resources, and we can’t always [Geoff: She said that?] … yeah, and I thought “That’s an interesting thing to come out, just between friends, from somebody who’s working on the medical side as well. So, just a little bit of anecdotal …

Barb: You know, I’d like to add to that idea of rationing, or priority setting, or distributive justice, it has various names. I attended a health are conference because I am a member of patient safety organizations, so I do a lot of speaking and attending these kinds of conferences. And this one was in Toronto, and there was a physician by the name of Charlotte Moore, a pediatrician, who works 50% of the time at the Ministry of Health and 50% of the time at Sick Kids Hospital. And she was giving a talk specifically on priority setting, so of course I couldn’t miss that one. [Geoff: No.] So in her talk she described the input that is used to set priority setting and one of them she said was value. So I had to ask, I had to ask, “Whose value?”, and she said “The values of the majority of the public”.

Geoff: Yeah, and who sets those? Do you have a referendum every time this comes up?

Barb: You know, I believe that when it comes to infants born with disabilities, the values of the public are deemed to be values, the majority values of people who choose to terminate their pregnancies beforehand. [Geoff: Yeah … ok] That’s my belief. I was very, very upset, and so I asked to speak to her afterwards, and we had a lengthy chat, and I asked her, “What about human rights? What about the value of autonomy?” And her response was we couldn’t, we can’t do everything for everybody, and you see …

Geoff: Really? I think there is a conviction buried in that that will never happen to her, that she’ll never be bought in on a gurney from an automobile accident with iffy life signs, and so she doesn’t have to worry about whether she’ll be revived or not. But it ain’t true, you know. We’re all subject to the same forces.

Barb: Yes, and I thought it was of grave concern that 50% of her job was at Sick Kids on the front lines working on palliative care for complex care kids. So, you know, so I thought that was certainly a conflict of interest.

Geoff: Well, it happens not only to young people and I have to tell you that the perception of a culture, Rob and Barb, is probably not far from the truth. There was an article in the Globe and Mail on April 23rd where private care crusader Jacque Chaisoui? has been called to account for slow-coding, effectively, for a patient who walked in emergency breathing problems and was told to sit down and wait. And they waited until he practically fell out of his chair, and his teeth fell out, and his face was blue-ish purple, and then they examined him and they said “Oh well, he’s dead”. You know, when another woman in the emergency room with her daughter or son tried to revive him, the nurses said “No, don’t, you know”. And, you know, it’s coming out into the open now, and it is quite disturbing.

Barb: You see, nobody ever says you can’t have treatment. They just say “later”, that’s how it works, and later never really comes and if it does, it’s too late then. [Geoff: Yeah] It may very well have been too late for my daughter in the final 24 hours, that we’ll never know, but her respiratory status had degenerated so much throughout the weeks that we were unaware of. So it is a concern. My own feeling is, I’ve done a lot of research into rationing and so forth, and we like to argue that we don’t need to ration. We say we don’t need to ration, we waste so much here and there, can we do a better job and all of those things have merit. But on the other hand rationing is occurring, and so while we argue that it should never happen, it is happening … . So if we don’t get on to the table people from disability rights at the table, at the policy table, boy, then these things are just going to go on. And by the time we ever get involved, they may be very well developed, and it’s going to be too difficult to change things. So my own feeling is that we take the reality and get involved.

Geoff: Yeah, it’s a hard one to grab a handle by but somebody, pardon me, mentioned, surgeons, and I’ve done oh a year’s of hospital planning and I know that doesn’t make me any kind of expert but it made me very familiar with that the surgeon’s call the shots and everybody else follows. So maybe it’s the place where to direct these policy initiatives.

Rob: One of the things that has really, ah, grabbed me about the Annie Farlow case, ah, really are Barb’s efforts. And this is not to, you know, put a total halo over Barb, although maybe one should, but it’s to say that it’s just staggering just how much work somebody like Barb has to do just to get fundamental information, to raise awareness, to get somebody to, in some sense, really care. And the negative reactions you get from those in positions of power, like in the hospital, when they start to feel threatened, when the conversation is not going the way they intended, even though in some sense a parent, and also a patient, has certain kinds of right to certain kinds of information, and hospitals want to present themselves as always doing everything they possibly could, and abiding by every possible regulation, there being nothing that is not being fully revealed, that they are operating transparently. But that just doesn’t seem to have happened in this case, and that is why this case has been going on for over three years, I think, despite the huge efforts and hug investments that not just Barb but her whole family have made in this case.

Geoff: I’m kinda surprised that it is still behind closed doors. I mean, if I can find it surely the Ontario government is aware of it. Why have they not picked it up and run with it? You know?

Barb: Well, it’s an interesting thing in a public health care system. The priority strategies are developed in the government and then implemented of course in a public hospital. So it would be shooting yourself in the foot to expose these things which the government itself has created. So when you’re looking to be reelected, I don’t know that you want to expose these things. You know, it’s a problem really with our public healthcare system that we don’t really have an independent body and in fact public hospitals there’s no accountability anywhere. The Ombudsman does not have jurisdiction over hospitals. And another thing …

Geoff: Yeah, that’s true, eh.

Barb. Regarding these children like my daughter or anybody who’s vulnerable is that there really is no accountability. We have a small claims file going right now, and the hospital is just trying to move it to Superior Court.

Geoff: Oh yeah, you’ve had a hearing this week, didn’t you?

Barb: Yes we did. We had a motion this past week. It was supposed to be a two hour motion that went almost six hours, with no decision made.

Geoff: Yeah, I mean, what does that mean? It means the decision is still coming?

Barb: Yes, well, you see, the automatic position that the judge, and possibly many people would take, is that small claims court is not set up procedurally to handle a complex medical malpractice case. [Geoff: Right] And that the case has general importance because of the reputation of the hospital, when a family has made allegations that their child’s death was maybe caused by a lethal dose of narcotics, and that there was a plan and in fact the hospital has a policy to withhold certain surgeries from certain infants, to withhold life-saving care. Those are extremely serious allegations, I would be the first to say that. And I would say that they are not made loosely, without much evidence either. And so the position that the judge was taking initially was that its was a no starter, we can’t do something like this with these doctors’ reputations in small claims because you see the problem is …

Geoff: Yeah for him because it would like carrying it through in traffic court.

Barb: Yeah, but the problem is that to pursue this according to many, many medical malpractice lawyers that I’ve spoken with, to pursue this kind of a case in Superior Court, if we won, so the best case scenario is that we would likely lose $200 000. And if we lose, we’d lose $600 000.

Geoff: So if you won, you would still have to bear your own costs, and if you lost, you’d have to bear those and the hospital’s …

Barb: There would be a portion of your costs that would be covered, that’s for sure .., but the thing is that it’s a very expensive endeavour. So we’re just not prepared to go there. And so we argue, on the other hand, that this case is not complex, except that the hospital wants to make it so. It really is a basic consent case, and the DNR was entered without informed consent, and we have in writing the intensivist wrote, after the summary of the meetings, that after a discussion with the father through the night suggested that the parents’ wishes may be changing. There are a lot of conditional words in there, and what happened was that the intensivist, through the night, when my husband was alone, the intensivist said to my husband, you must be very tired and of course he was tired, and he said that it has been very difficult for your family. Yes, it has been very challenging. And he said that if your daughter should take a turn for the worse would you like her to suffer. Do you want her to suffer? Now, you know, who’s going to say yes to that? So as best we can tell, that was the sense that the intensivist had that we were changing our minds resisting treatment. That’s the best we can go on. And so you see how these things are framed and reworded and …

Geoff: That’s scary, isn’t it?

Barb: It is, it is. Another thing that I wanted to say, Rob had mentioned about the supportive group, and we very much appreciate that. But ironically other support we’ve received through somewhat different means is by the system itself. The Canadian Pediatric Society, for instance, invited me to submit an essay about my daughter’s life and death, and then they published it in their journal. The Ontario Hospitals Association invited me to speak for their patient-centred care ay and the University of Toronto Joint Centre for Bioethics invited me to give an endowed lecture on ethics and patient-centred care which was webcast. So the way I understand this, the way I’ve come to understand this support is that the people on the inside they know there is a problem, they recognize it, they’re frustrated by the problem as well. Yet they may not be in a position to know how to fix it, or even how to speak up about the problem. So I very much appreciate the support of these groups, and there are very many others across the country where I have spoken, and I appreciate that, and I suppose that’s why I try to take a collaborative attitude to this. You know, this isn’t a witch hunt, come on, let’s all talk about these issue and bring them out, invite the disability groups, the policy makers, the medical staff, let’s talk about these issues, how can we resolve them. Let’s talk about the financial issues at hand, always treat people with compassion and humanely. Certainly, as my daughter’s death in the absence of palliative care in the final week of her life. We have some difficult decisions to make, and pretending that those decisions don’t even exist are, don’t need to be made, isn’t the answer.

Geoff: Oh, all right.

Barb: Nobody wants to be the first one to talk about it [laughs].

Geoff: I can see that, and it’s doing to be difficult to make it an election issue, though less and less so as the baby boom reaches the age where health problems take them further rand further into the orbit of the hospitals and into the orbit of intensive care. Rob and Barb, was there anything else that you in particular thought that we might have overlooked in our brief discussion in the ethical issues that you’ve raised in the hospital care of sick children?

Barb: One thing that we didn’t bring up that I’d just like to mention is the importance of consent. And I’ve found that in my own situation I think that the attitude of many people is to look at my daughter’s genetic condition, that the genetic label itself, which is probably what the doctor’s did, which is very bleak, and to say, well …

Geoff: What’s the label?

Barb: It’s called “trisomy 13” [Geoff: Oh yeah], and it’s without a doubt, the children, most the children die shortly after birth because there’s severe brain defects, but your former guest Sam Sansalone has told his story. His daughter is now 7 and very happy, and sure, these children are limited. Sam’s daughter walks independently, she does very well. But they are very delayed. And it’s a difficult decision, a very personal decision, as to caring for a child like this, when you know that no providing treatment will allow for a natural death. And certainly not a decision that we made very lightly, but with much information and consultation from other families. But a lot of people look at the outcome and they say “well, you know, she probably wouldn’t have died anyway”. But that’s not the issue here, and you know what, I would say that even if everything transpired appropriately because we didn’t want our daughter to live on machines, we didn’t want her to suffer unnecessarily, but perhaps the chance is greater than not that she wouldn’t be alive. But that’s not the issue, the issue is about consent, about informed consent, and this is what we’re so worried about is that they crossed a really serious line by you know arrogantly stripping our rights in such a covert manner. Without any reasoning, because we were very rational, we had a good relationship with the staff, it was clear, and it’s in the records, that we didn’t want to pursue futile care. So this is the concern. And I compare that to …

Geoff: So you played ball, and then they changed the rules …

Barb: Yeah, exactly. You know, it’s like in the early days when they did the sterilization without consent. How many people would have said Well, look at that girl, what sort of mother would she have made? Come on.” But you see again that’s not the issue. It’s the consent that is so important. Yet we do recognize that, for the situation of sterilization, we really strongly recognize that need for consent. When the little girl Ashley, out in Seattle, you remember the growth attenuation surgery?

Geoff: No …

Barb: The little girl had, she was severely delayed, and her parents wanted a number of surgeries done, to keep her small, so she wouldn’t grow up

Geoff: Oh, I do remember that

Barb: yeah, and one of them, one of the surgeries was a hysterectomy, and the disability group there in Washington did a full review on the situation. And I might add that the surgery that was done was done with parental request and consent. But the disability group took great offense when they discovered and realized that the hysterectomy caused a sterilization, and therefore the law was broken. So you look at how we observe that, how we respect that law, and yet here we are, the right to consent for treatment or non-treatment is a really, really important issue in anybody’s life. I mean, if a patient comes in after a terrible car accident and they’re essentially brain-dead we still allow the family the right of consent. It’s very important. … My daughter was never on life support. [Geoff: Oh, ok]

Rob: And I guess what I would add today, we have touched on, but I would like to underscore is the need for public awareness, public dialogue, public involvement, in particular cases and in the connections between various cases. It’s interesting that Barb mentioned the case that’s become known as the “Ashley X” or just the “Ashley case” on growth attenuation treatment, because that’s another case that our group, the What Sorts Network, has taken an interest in, blogged on, and been in conversations with people involved in that case as well, and Sam’s case as well. Also, our group grew out of looking at the history of eugenic sterilization, particularly in Alberta, trying to get access, broader access, to records that are about something that is fairly distant in the past but again there’s a reluctance to have that information made publically available, and to have that kind of cleansing public discussion about stuff that ended, at least explicitly, in 1972 in that case. But again you start to think about, the common theme here is the need to not wash one’s laundry in public, but to really think about what our values are as a society, and whether we live up to them. Or whether there are cases in which we say one thing, and we really kind of content to fall off that path and do something else, and I think that’s especially the case when it comes to views about disability and impairment.

Barb: Yeah, right. And you know when we talk about prenatal screening, and testing and termination, people take great offence when we bring the word “eugenics” or lately as it’s called the “new eugenics” into the fold, because they say that this is an informed consent decision made as the personal decision between a woman and her doctor, and it’s nobody’s business and it’s not appropriate to use that word. Yet when we have health policies and priority strategies that are based on the values of the majority a new …

Geoff: which are unknowable, and can be appropriated by anybody

Barb: yes, and we’re making treatment decisions and forming policies at the newborn stage, then what we have is a transfer from the private decisions that represent the majority onto the minority. And in fact when it comes to … a government health policy, then in my definition that does constitute the new eugenics. [Geoff: yeah] So right now of course we have the genetic testing … and it’s not just genetic testing, they also do a lot of ultrasound testing for anomalies, like brain defects. And there’s a lot of terminations for those reasons. But today we treat for or we do these screenings or testing for a number of conditions but we know tomorrow’s genetic testing is going to enable us to do even more testing. So we really have to look at these trends and try to understand them, and really, really make sure that everything is transparent about what we’re doing. And that’s just absolutely not being done right now.

Geoff: Maybe there need to be some hoops too. I mean you have transparency but I mean if you’re still fighting for the coroner’s records, the fact that you’re entitled to them doesn’t mean an awful lot. What you really need is a point at which everything stops until certain conditions are made and then continues on. Everything stops except the patient’s care. You know? It doesn’t sound to me as if we have these kinds of hoops for the system.

Barb: It’s very frustrating.

Rob: It’s true that people you know in positions of responsibility and power could make a big difference. If people if some politicians jumped up and down and said, “You know, this case, something smells fishy here. We really do need to get to the bottom of this. There do seem to be issues of rights here. And that could make a difference.

Barb: Yeah. Actually, there’s one more thing to mention. We were in Geneva, Switzerland, two years ago. I was speaking at the World Alliance for Patient Safety, and it was arranged to meet with a human rights officer from the Human Rights Office and it was at that point in time, after I told the story, that the human rights officer said … You know I said to her, “You know where I live, everyone’s whatever … Well she had disabilities, and the human rights officer, I’ll never forget her eyes widened and she looked at me and said “That’s not the way the High Commissioner’s Office sees it”. And she asked to be followed on our case. And so we copy them on various letters to the coroner and so on. And when we’re finished with this we will give them a complete review. Because they want to understand what, how these issues play out in the front line. In a developed country like Canada, and I’m sure they’ll be surprised. [Geoff: Yeah]

Rob: So it is interesting that if you go back to the Kaylee Vitelli story which, you’ll remember, was the lead story on the National, CBC’s, Peter Mansbridge’s The National, for three nights in a row. Then that just dropped straight off. Partly, as the circumstances changes. And the real question is well, why was there such intense interest in that, and why did that just disappear from public consciousness. Why was there no real follow up there?

Geoff: Perhaps because it was viewed as exceptional.

Rob: It could be, though one of the things that also shifted as that story unfolded, and I was surprised that this was never really reported, but that the condition Joubert’s Syndrome is typically not a life-threatening syndrome, and one might naturally think that as the child is still alive, though she was literally on the operating table ready to have her heart removed to save the life of another child, that actually, she’s doing ok. She’s still a child with a condition, and with some problems, but it doesn’t look like … It looks like there was a mistake made of some kind, somewhere along the line.

Geoff: The kindest thing you could say is that there was an error of judgment.

Rob: Yeah, that would be kind.

Barb: Well, actually, the facts are that 3 years previous Sick Kids and Mt. Sinai published an article specifically on J’s syndrome. But it wasn’t on treatment for Joubert’s Syndrome. It was on ways to detect J’s syndrome through MRI brain scans prenatally so that the option of termination exists. The question in the air there is that once we have a firmer way of knowing of discovering these conditions before birth, does that mean that treatment options are restricted?

Geoff: Yeah, it should be part and parcel of this debate on research on stem cell accessibility too, shouldn’t it too? And they’re missing an issue. Just different stages of life. I don’t mean to compare them as the same values, but you know it is the one same value that underlies them: what is life? When are you entitled to the same efforts that would be there for you and me, you know. Yeah, yeah, I’m not happy either with that, but especially in Canada when it comes out, as Sam Sansalone says, in the States where you pay for your own care this seems to be less prevalent. Yeah. So it does seem to be a function of the public health care system.

Barb: Yes, I’ve found that because … through my work I’ve gotten to know many Americans, American leaders in health care. Wonderful, wonderful people. And I detect there’s a huge difference when I tell what happened to my daughter to an American in a private health care system compared to a Canadian. The Americans are shocked, just shocked. Ironically I sat next to a man on a place a couple of months ago, and we started chatting about health care—what else? That’s what I talk about—and it turns out that he was not only a physician, but a very well-known pediatrician. And he was then retired, but he had done incredible things in his career. So I asked him “What would you do if you had one ventilator and two children? How would you choose?” And he said, “Well, you don’t choose, you get on the phone and you keep calling and calling until you find another ventilator.” And I said, Oh, oh, ok, how about this: what is an administrator came up to you and said that we think it would be better to let that child die because you know the quality of life vs the cost of treatment, you know, it’s really not worth it if the child is going to be a burden on the parents, so we’re going to ask you not to pursue aggressive measures for that child. So what would you do, I asked him. And he looked at me, and he said “No administrator is going to tell me how to be a doctor” [laughs]. You know, I just realized that, and I appreciated his perspective, and I realized how different it was in Canada. And who’s really calling the shots? I don’t believe that doctor’s have the same autonomy. Perhaps depending on their position and rank and so forth. But I think …

Geoff: Well, autonomy is something you have to perceive, it’s true, and it may just not be a Canadian thing to see the autonomy. It certainly is an American thing. Yeah.

Barb: And for the Americans, consent is very strong, very, very strong. Very much respected. One of the specialists I spoke to about my daughter’s care was … well we had a chat, and he asked me well, what happened, and I told him, I guess the doctor’s didn’t want to save her life. And he said, he paused, he said, “I don’t know about that”, he said, “in my country we might not always agree with someone’s decision, but we respect that”. And the first time in my life …

Geoff: And what country was he from?

Barb: He was from the United States. [Geoff: Oh yeah] Just the way he said it—we might not agree, but we respect it. And this, … of course, I’m comparing private health care with our system, and that’s not always the only comparison to be made, that’s for sure.

Geoff: When we started, there wasn’t supposed to be any difference. People who are concerned about this attitude that if you can’t fix them, throw them out, which I think is common to most medicine. It affects anybody with a disability or anyone who is too old. It’s disturbing. Where do you put pen to paper? Where do you put your oar in if you’re not directly involved, if you don’t have an issue like Barb does, but you think her issue is worth supporting?

Rob: Well, I guess the place I was going to say, but you said you were thinking of things more generally. If you go to the Facebook group on the case, Justice for Annie, if you just type that into the search engine, you can find out more details about the case and link up to the Annie Farlow website and you’ll see who else is involved. But independent of that more generally organizations like the Canadian Association for Community Living are based in Toronto. They are an ally on issues like this. The organization Not Dead Yet, based in New York State, is another. Generally speaking, any, almost any large-scale disability organization will have will take a keen interest in these kinds of issues. The What Sorts Network is another kind of cross-over venue between university researchers and community organizers and we run a blog if you just type in “What Sorts” into google, you’ll find us fairly readily, and you can search by category and keywords, you can find things on the Farlow case or many other things that are focused on disability there. I think working with those kinds of organizations is the way to go. But ultimately people you know, many of your listeners are already informed about many of these cases and they don’t need it but you need to get details about particular details of a case like this and start to see some of the connections between different kinds of cases. These aren’t purely isolated. You might think “Oh, who knows what really happens in that case, and it was an unfortunate tragedy, an inevitable tragedy, for this particular case, and maybe there was some oversight or so on”. But number one, we don’t really know, and we’re being pushed away from finding out what went on in this case, and number two there’s already enough evidence to suggest that there’s a certain kind of systematicity in cases like this. There’s not just one of them, but a number of them that line up in certain ways and that’s kind of scary, I think.

Geoff: There’s this case that’s recently hit the papers too, to do with Kaylee Vitelli, her husband, her father, I think it’s Jason … Crystal. And they’ve come right out in the open in the paper and said that “We think that Sick Children is not a safe place for our daughter. We’re having her moved to a hospital in Newmarket.” It’s straightforward for them.

Rob: Yes, there are more recent kinds of cases. Again, I think it just underlines the need to get more information, to find out more. There are strong allegations made in a number of cases. What do they point to? We don’t know until we, you know, go further down the track of having this public or semi-public dialogue. The idea that so much of this is going on behind closed doors, I mean, in a society like Canada’s that prides itself on human rights and the equality of all people, and so on, I just don’t think this is acceptable.

Geoff: On that note, we’ve pretty much run out of time. I’m glad that both of you have commented on this. I think that we’ve given it a pretty thorough go over in the time we have had. Ok. Thanks.

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