[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.
Transcript of Part 1:
Michael Shaw: This has been a fascinating discussion. I’ve got family physicians in the family who get to sign death certificates at 3 AM, they don’t do it to go catch a baby at 4 AM. They’re generally really good people that have gone into this field. And yet time and time again, we see this disconnect between what we think is normal and decent and civilized and yet they can’t see our point of view. We had a great family doctor until Sydney was born and then she told us to take her home and lover her like a puppy. Where is it? Are the med schools screwing them up? Where does this real fundamental disconnect that we hear about so often, and yet most people in the medical community are good, decent, loving, kind, I mean, they’re doing this job for a reason. Where does that disconnect do we think come from?
Dick Sobsey: I don’t think that we’re normally dealing with people who know that they’re doing the wrong thing. I do think that we’re dealing with people who aren’t always honest with us. But I think that we’re dealing with people who think that they’re right and we’re wrong, who see us as under some kind of dangerous delusion. See Bee Ferar, who was one of Canada’s most famous psychiatrists back in the 1940’s, wrote an article on killing babies with severe disabilities, why basically all of them should be killed and you know his recommendation—he wanted to be really really fair—and so his suggestion was that you have to wait until their fifth birthday to make sure that… You know I was planning a pizza party for my kid, it wasn’t exactly what I had in mind. His idea was, wait until their fifth birthday because then you’re not going to make any mistakes and we can’t have mistakes, we don’t want to have mistakes etc. But what he writes is, and you know I hope, this article was published in 1942, and I hope that won’t see articles like this published today, but the part that I think is very relevant today, when he talks about this “well you have to wait until their five years old,” he said, you know what the problem is going to be, these parents are going to get really attached to their kid and then that stands in the way of us doing the right thing. He’s a psychiatrist and he refers to parents’ attachment to kids with disabilities. And he refers to it in the technical sense and he refers to it as a morbid obsession. And so in this article what he’s saying to every psychiatrist and every physician is, your duty, the most important duty you have in order to make this better world in which we just kill kids with disabilities, is to do everything in our power to ensure parents don’t get attached to their kids with disabilities. In that view, we’re all sick. Ok? We’re the ones who are suffering from this morbid obsession. And they’re the rational people that really understand what’s good for the world. The other thing that I want to mention, and it’s an interesting phenomenon and it’s one that I can’t completely explain, is that I see nurses confronting doctors when they get brave enough, I see doctors confronting each other in our own experience, we had a child who was very medically challenged, I guess would, and we had an incident where our primary pediatrician was going to be away for a couple of days and there was another pediatrician who always covered for her, this was a very small town and they were the two female pediatricians in the town and they always covered for each other, and in the middle of the night, our daughter’s condition was such that she couldn’t mobilize glucose and so she literally could starve to death in three hours and what kept her alive was IV with dextrose and so in the middle of the night the IV failed and they called this other pediatrician and she came six hours later and our child survived that particular incident but she survived just barely and when I confronted the phys at that time her response was basically, your child’s going to die anyway, and effectively she said, it’s a cold miserable night and why should I come out of my bed at 3 o’ clock in the morning to you know, they couldn’t restart the IV they wanted somebody to do a cut down to get the IV to start, why should I do that when your baby’s just going to die anyway and it’s prolonging the inevitable. But the interesting part was, after that happened, when our primary pediatrician was back, she didn’t actually ever say anything bad about this other colleague who she worked with, but she did come to me after that and she gave me a card for another pediatrician and she said this is Dr. Goldfarb, if I’m not here call Dr. Goldfarb, he’s a rotten son of a bitch, but he’ll keep your baby alive. Those were her exact word, and so what I’m trying to say is that these group of people know each other and they know what their attitudes are and they usually try to find a way to work with each other although if you read for example the story of the Indiana Doe case where you have the two physicians facing-off in the neonatal intensive care unit about to have a fist fight, it does sometimes come to clear confrontation like that, but that whole issue of you have people with these different attitudes where they won’t or they don’t feel that they can, I mean sometimes you’ll have them look at you like “you don’t really want to talk to that person,” but their dedication to their profession is such that as much as they care about your kid they aren’t very willing to confront those issues very publicly and it’s a shame.
Michael: but if they read Singer, most of them will say that’s reprehensible and yet they act as if that’s the greatest thing since sliced bread, that’s the disconnect that I’m talking about.
Dick: (laughs) I’m not sure if they all will say that that’s reprehensible. I think a lot of them will, but I think a lot of them will support those arguments, and sometimes I think when they’re putting on a face that seems a little bit more sympathetic in some cases I think that’s very real but in some cases I think that’s their idea of humoring us nutcases.
Transcript of Part II
Sam Salone: I’d like to add that hospitals are a bit different in the way they function than the family physician type practice. Family physicians, it’s their own business. A hospital is a large business. There is a definite culture that drives the relationships, interactions, the pecking order, there is politics galore in a hospital. You know, you ask how could they do one thing one day and then another another day and have their different approaches, you know, there were loving, socially active people in the 1940s in Nazi Germany. Yet the whole nation was almost was moved in a direction of an immoral eugenics movement. Once dehumanization sets in, that’s going to happen, whether or not the person has loving relations and is capable of all these virtuous qualities. If there’s dehumanization all the rules go out the window because the interpretation is wrong. To answer your question, I think the biggest reason why it happens in hospital settings is culture and there’s a dehumanization that happens when there is a parent that is advocating in a way that confronts their system, that is interfering with their efficient system and way of doing things. You become a target, you’re an annoyance, you’re a trouble-maker, you’re rocking the boat. Dehumanization, those are the things that could start allowing that to happen. And then people who are good can otherwise do bad things. Having said that, I really believe like you do, we have a lot of friends who are physicians, they are among the most respected members of our society for a good reason in part, because not only do they provide a good service, but we know a lot of wonderful physicians and even at that hospital where we had the most trouble, there were some excellent and the majority of them I think are excellent. But, it’s what I said before, there’s a small percentage that are influential and if you don’t submit to that culture as a doctor who’s in a subordinate position, your career will be affected. It will be. I won’t get into it. Our pediatrician in Toronto has a story about this when he was in his residency. It’s incredible the political pressure, the subculture pressure you’re under to do things their way, the system’s way and to not mess with it. So good people will do bad things, I think it’s dehumanization that will set in in certain situations.
Rob Wilson: Is that what happened with your physician? Because you had somebody who you thought the world of and then all of a sudden, what’s going on there?
Wendy Macdonald: You know, I don’t know for sure. I think in, again in retrospect, he just believes that people with disabilities don’t have any value. And he didn’t want us to be burdened; he thought we were better than that. That was just his personal belief. And because we had this relationship, I guess he felt, I had listened to his advice on a lot of things, through a lot of years, and because I thought he made sense before this moment, I guess, because it didn’t impact my values in the way that this did. But what I’ve come to believe and I don’t know because I’ve never had the conversation with him, but I just, when I just remember that conversation, it’s because I think he truly believes that people with disabilities are a burden and why would we want that burden? Because I remember one of his first statements was, we were having trouble getting pregnant and now we got pregnant, and he said “Well, you know you can get pregnant again. So if that’s the challenge…” You know, I don’t know that’s my guess. I think it’s beyond just being a physician, I think for him it was a culture of how we value people.
Dick: There are also, and I don’t think that we can ignore it, there are crass economic reasons that enter into this as well. And so, because somebody decides that they will treat your baby, that baby is in a bed in a hospital that some other physician’s patient might be in. There’s also the thing and this has a terrible impact on primary care, that doctors in Canada are paid primarily by the procedure and you’re paid by the procedure whether you have a patient that you can do that procedure on in five minutes or it takes 45 minutes to do the same procedure. And we actually see in a number of cases, when doctors are disability friendly they tend to become ghettoized, because then all of the people with disabilities go to those doctors, and so the doctors who have nobody with a disability are taking patients every five minutes and they’re making five times as much money. And we’ve actually had circumstances in which doctors’, it has been challenged whether doctors’ hospital privileges will be removed because their length of stay for bed utilization for any given procedure is higher than anybody else. And that the underlying reason is that they have patients with disabilities and so instead of going home after a tonsillectomy in one day, they’re staying in the hospital for five days. The hospital looks at that and says, this is a bad doctor.
Sam: We’re in an envelope funded hospital system, here like in Ontario. They do actually have budgets for how many of certain procedures they can conduct, so there’s the financial aspect on a provincial level, funding for the health care system that’s envelope funded, and there’s one other factor though, that came to focus at one point when we were dealing with (?), that they think of it not just as money, but as resources. They were concerned that our daughter, with this supposed lower quality of life prospect, would be getting ahead of some other kids and that wait may cause the other kids who waited to die. So, other kids deserve to die less, our daughter deserved to have more of a prospect of dying than the others, that’s what it came down to. And she didn’t deserve the priority. And again I think it’s all the dehumanization. Another psychiatrist, is it Aaron Copeland? A modern one, I mean he was the complete opposite, my wife’s a psychiatrist, by the way, so I gotta give a good plug for psychiatry here, he really pointed how all of this happens in a book, I think it’s Love’s Execution, this is about dehumanization. They have to justify doing something terrible, sinister to people somehow, and the way to do it is through dehumanization. He outlines it very well in that book, worthwhile reading. It’s a different title, I’m sorry.