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The Current Transcript for April 13, 2016

Host: Anna Maria Tremonti

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

[Music:Theme]

SOUNDCLIP

ROBYN CAMERON: She ran in front of the train. I guess she was trying to play some sort of game with her friend.

ANNA MARIA TREMONTI: Robyn Cameron will never know for sure what it was that caused her young daughter to run in front of a train, but she does know that the very spot where 11-year old Kendra was killed still has no pedestrian gate or other barriers to discourage others, children or adults, from doing the same. Over the last five years someone has died at a rail crossing every other day, from cars that don't see trains to pedestrians trying to cross ahead of them. There's a list of the 500 most dangerous crossings in the country, but Ottawa has not shared it with the cities or jurisdictions where they are. In half an hour, the CBC's Dave Seglins on the implications. Also today--

SOUNDCLIP

I know they’d scrap it and it's not ever going to get better so I’m going to die and what worries me is how I’m going to die.

AMT: Toronto microbiologist Dr. Donald Low made headlines when his posthumous plea for doctor assisted death was released. Across Canada, many are asking for help in controlling how they will die. Still, others find ways to hasten their death that will not implicate their families. Journalist Sandra Martin has tracked down many such stories in search of what she calls a good death. She joins me in an hour to share what she's learned. But we begin with another ethical medical dilemma in the headlines.

SOUNDCLIP

So you have no sex selection in-vitro, but you can have sex selection in utero. This problem is very partially Indian, and hugely Canadian.

AMT: In a country where abortion is legal, how do and how can those who believe in the right to choose confront those who use sex selection to abort females? I'm Anna Maria Tremonti and this is The Current.

Indo-Canadian couples choosing sons over daughters: study

Guests: Kripa Sekhar, Simi Gill, Alana Cattapan

[baby crying]

AMT: Whether it is a boy or a girl it should be one of a parent's most treasured moments when they learn their baby's gender for the first time. But new research out this week suggests that in some Canadian families in the Indo-Canadian community especially, parents are not leaving the baby's sex to chance. It suggests that sex selection through abortion is making for an unusually high proportion of baby boys. The study in The Canadian Medical Association Journal looked at more than six million births in Canada. It found that when some Indo- Canadian parents already had two daughters, they were much more likely to take steps to ensure they have a son. Canadian-born women with two daughters have roughly the same chance of having a boy or a girl, but Indian born women in Ontario gave birth to 196 six boys for every 100 girls. The study suggests that this boy baby boom may be linked to second trimester abortions. Kripa Sekhar is the Executive Director of The South Asian Women's Centre and she joins me in our Toronto studio. Hello.

KRIPA SEKHAR: Good morning. Thank you.

AMT: You were on the advisory committee for the study. How did you react to these findings?

KRIPA SEKHAR: It is something that we suspected based on some of the clients that we ourselves had been seeing. I mean, I will go back to say it's a very complex issue. It's deeply rooted in certain traditions and beliefs that a male child is preferred to a female child and more so within certain communities, I would say those are small numbers but they are hugely concerning because it's unbelievable that even during this day and age, we would be talking about this issue. Somehow the relevance of having a male child, or the importance of having a man child, is far more satisfying to certain Indian families that are probably more traditional than others and look upon this baby boy as a welcome addition to a family. So the girl child is less than, and it doesn't just end with birth, it carries on throughout their entire life. So, I think it's a very good thing that there is a study in place to actually validate what many of us have been suspecting has been happening in the community.

AMT: So anecdotally you were suspecting and seeing this but now you have numbers that tell you there's a concern. What have you been seeing in the community?

KRIPA SEKHAR: So it's not just the Indian community, I want to be very clear we serve the South Asian Women Centre, but there are other communities that also place a lot of importance on baby boys. For example, there was a woman who in her third pregnancy, she had twins. She had already had two daughters, prior to that she had twins and when she delivered she would not even look at the child, at those babies. She wanted to have nothing to do with it. The staff member attached to the case basically tried to help but she was afraid of going back to her parents or her in-laws home because she knew that you would not be welcome. She knew that she would be treated badly. So actually the children were handed over to foster care but a few years later through a lot of counseling help and guidance and helping her to understand that girls are just as great as guys, she managed to get her children back and she is a really good advocate, too, for this particular issue now.

AMT: So you are identifying it's not so only an individual's or a couple's view of this, there is pressure in the family sometimes.

KRIPA SEKHAR: What we have always suspected is that based on the clients and what we've seen is, many of the clients—and it’s also connected to the abuse that the women go through in the event that they have a female child. There are all these taunting remarks, oh she can't have a male or you know, she's unable to provide us an heir in the family. She herself feels the guilt. There's a lot of pressure so I don't believe these abortions happened because a woman wants it to happen, it's not her choice at all. It's usually coerced; coerced through pressures, through traditions, through the belief that somehow that male child is going to fulfill the obligations of the family and a female child can't do that.

AMT: And so how do you, and again you make the point that this is a small percentage, and we are talking about one community because it's the focus of a study, but this is a country where abortion is legal, you don't need a reason to have an abortion. How do you actually fight this cultural issue while still respecting a woman's right to choose?

KRIPA SEKHAR: I think that the woman's right to choose really is at the foundation of this. It is her right to choose, but in this case, in these instances, we are seeing that women are being coerced and we see this through the assessments we do with the women who come to the centre. Also—

AMT: In other words, they don't have the right to choose? They lose it.

KRIPA SEKHAR: They don't have the right to choose, they've lost it. So we cannot bring in the abortion argument into this because this is coercion and I think when you speak about it, it's a form of intense abuse to women and they have to carry the burden.

AMT: So how do you tackle it?

KRIPA SEKHAR: So actually with some of the older women, we have groups and we talk to them about some of these issues and surprisingly many of them have accepted the fact that they're in Canada and girls are welcome and they welcome their daughters. But, there are still those who feel no, no it's important for my son to have a son because then that child will look after his parents or whatever it is. There are certain social obligations attached to a family obligations, attached to these roles that are sort of created through traditions that are very old.

AMT: Well, we're going to talk to our next guests about creating new traditions, so thank you Kripa Sekhar for coming in.

KRIPA SEKHAR: Thank you so much.

AMT: Kripa Sekhar is the Executive Director of the South Asian Women’s Centre, she joined me in our Toronto studio.

[children singing and clapping]

AMT: Well, that is the sound of a Lohri for Her event. They are celebrations to honour the birth of girls and honour all daughters in the Indo-Canadian community. My next guest hopes such festive events can help change attitudes around girls in the Indo-Canadian community. Simi Gill is the founder of Lohri for Her and we've reached her in Brampton, Ontario. Hello.

SIMI GILL: Hello, good morning.

AMT: Hi. What was your reaction to the findings from the study?

SIMI GILL: Again, I was a bit shocked but also very relieved that now we have numbers to support what's actually happening in the community.

AMT: Paint me a picture. How is the birth of a daughter greeted versus the birth of a son?

SIMI GILL: Well, for a very long time, what I've been seeing is that when there is a birth of a boy in a family, it's greeted as a gift. It's received very positively, there are celebrations, there are a lot of positivity around that whereas compared to when you have the birth of a girl child and you, not just the couple, but even the family members, they start to receive condolences from relatives as if it's something that's really bad that's happened in the family.

AMT: Are you talking just about a small percentage of people?

SIMI GILL: I'm talking about-- I don't have much quantitative research but based on the ground work that I'm doing and the qualitative research that I've done speaking to these families, I would say most of the families have experiences, either in their in their own family or within a relative's family, that when there's a birth of a girl child there is this negativity, there's this sort of a solemn environment that's created because it's not regarded as a gift from God as compared to having a boy child.

AMT: Tell me about the idea then of Lohri for Her. I'm saying that right, Lodhi for Her?

SIMI GILL: Yes, you are. So, basically the inspiration was how long can we keep blaming traditions, and we also noticed that you know, it's not the mother and sometimes it's not even the couple that feel that way and all these thoughts are forced upon them from pressures in the society, and in the family, and in the relatives. The relatives sort of bring this upon them. So we wanted to create a space where we can allow these new parents to be able to celebrate this great moment in their life. Lohri is a very great festival that we have in the North Indian part of the regions where you celebrate new beginnings, for example, the birth of a child, a new marriage, new harvest, which was popularly done back in the days. So we literally took that festival and dedicated it to the girls who were forgotten and we invite families who had baby girls to come out and be able to express that happiness that they're not allowed to do so simply because it had a baby girl.

AMT: And so what are the events like? Are you getting a lot of people coming out?

SIMI GILL: Yeah, I mean the response is outpouring. When we first started five years ago, our first event was literally sold out. We didn't have seats in the venue to accommodate all our guests because there were so many people that had actually bought tickets at the door and it's a lavish event. It's sort of like you know, a formal dinner where you have entertainment, you have all these guests that come in and they get to have dinner and dance, but also, Lohri is actually a bonfire festival. We add that element where we have the fire in the middle of the dance floor and we invite the close relatives of these baby girls to come around and get the sensation of being a part of this celebration and they bring their girls and they do pictures, memorabilia for these families to take home that they've actually celebrated their baby girl which they were not able to do if they had not been to the event.

AMT: And you do something else, what's a pink ladoo?

SIMI GILL: Right, and that's sort of a sister campaign that came out of this. Lohri for Her is a once in a year event, but we had so much response and support from the community to be able to continue this notion and bring it into their families and do it all around the year, so a pink ladoo—a pink ladoo is actually an Indian sweet and it is very symbolic. It is usually distributed when you have a big occasion in the family, birth of a boy child, a wedding. So what we did is, we literally took that ladoo and we turned it pink. Well, we didn't, our sponsors they turned it pink, and now they're allowing people to be able to order pink ladoos so that's another tool for these families to be able to openly express how happy they are specifically because they're celebrating a baby girl. The orders and the families that are coming out and asking for these pink ladoos are also very, very you know, outpouring and we're very happy to see that these tools are actually being embraced by the community. That's what they need; they need a new way of being able to change old traditions.

AMT: And it sounds like you are changing attitudes, then.

SIMI GILL: Absolutely, yes and from the conversations that I've had with families while we visit these families in their own homes, it's a very positive space bringing in people that want to be part of the solution. And also, those that may not want to be part of the solution so nobody can deny a celebration and it's sort of a backdrop that we create where everybody is welcome into this conversation and force them to start thinking differently and in a very neutral space.

AMT: Simi Gill, thanks for sharing this with us.

SIMI GILL: Thank you.

AMT: Simi Gill, founder of the Lohri for Her celebration. She joined us from Brampton, Ontario. Well to talk about what, if anything, can be done on a policy level to address these new findings, I'm joined by Alana Cattapan. She is a post-doctoral fellow at the Dalhousie University's Faculty of Medicine. She's a contributor to the blog Impact Ethics. Alana Cattapan is in our Halifax studio, hello.

ALANA CATTAPAN: Hi. Thanks for having me.

AMT: Well, the study focuses on the Indo-Canadian community in Canada. Do you have any thoughts on the way it's been reported in the media?

ALANA CATTAPAN: I've contributed as well to some of that conversation and I'm particularly interested in the way that this is focusing on the practices of the Indo-Canadian community when the valuation of the lives of girls and women in Canadian society more broadly continues to be a problem. So if we're focusing on the way that the Indo-Canadian community is perhaps, in some cases, practicing sex selective abortion, I don't say the community, but a small number of people, we could also look at the way that this is one example of many examples that Canadian women continue to be undervalued. I think for example, of pay equity and the way that women continue to make less money on the male dollar so this example that's provided by the study is one example of many that we could identify in Canadian society.

AMT: Now you just heard two women say they're glad the numbers are out there because they see it in their community and they want to confront it.

ALANA CATTAPAN: Absolutely. It's good to have the numbers out and this completely new information, we've known for a long time. There was a study in 2009 that showed that there were some disparities in particular cultural communities as to the male/female sex ratio, but having this raw data is really fantastic.

AMT: What problems are arising though when you consider about how to limit or change this practice? We see them trying to change attitudes but can you, in a country where abortion is legal, how do you go about trying to change a practice and write and talk about the reasons for abortion. Why is one reason better than another or not better than another?

ALANA CATTAPAN: I think you're hitting the nail on the head here. The idea that some people might want to institute a ban on sex selective abortion is incredibly problematic. There have been motions in Canadian parliament to limit sex selective abortion but these have seemed like inroads to trying to get abortion laws back into the criminal code, and sort of as an inroad for particularly conservative parties in certain practices to occur. I'm not willing to say that there should be any restrictions on why women should get an abortion in Canada. In the context of Canada where women outside of major urban centres still can't get access to abortion, where going to a hospital to receive an abortion in New Brunswick still requires a 24-hour waiting period. We shouldn’t be putting restrictions on abortion and we also shouldn’t be asking providers to ask women why they are receiving an abortion because there's any range of reasons. And as your first guest, Kripa Sekhar said, there might be coercion involved. We don't we don't know why women are seeking out abortions in all cases and we might not want to know always.

AMT: It's interesting because she makes the point that this is a form of abuse if it's coercion. How do you tackle that, again given all of the other concerns?

ALANA CATTAPAN: This study doesn't give us any information about that at this point. There seems to be association between sex selective abortion in this case and having a male parent of Indo-Canadian descent, but again, that's not entirely clear. I think that more research into this would be helpful in terms of qualitative research that could identify if coercion is occurring, but I hesitate to say that that is actually in practice happening because I don't know.

AMT: It raises that real question though that we have to think about. Also, the Assisted Human Reproduction Act of Canada banned sex selection of implanted embryos. In the US, that is legal and there's no banning of sex selection obviously on the other, in utero. What are the ethical implications of all of that?

ALANA CATTAPAN: I'm going to maybe ask you to clarify a little bit because the ethical implications of the Assisted Human Reproduction Act and the ban on sex selective implantation is a little bit easier to implement and control. We're talking about assessing an embryo and putting it into the body prior to in-vitro fertilization. When a child or a fetus is already conceived, it's sort of a different practice.

AMT: Okay, so it's not really fair to kind of lump them together and say that one is the one, they are very separate things.

ALANA CATTAPAN: They are different to administer from a policy standpoint but I will say that both practices engage in the valuation of sex and gender in different ways and there are assumptions in both cases that the genitalia of a fetus, a fetus we're talking about, can and should translate to certain kinds of gendered behaviors. So, like there's expectations that a girl will behave in a certain way because of her genitalia, or a boy will behave in a certain way because of his genitalia that we're reading onto unborn babies.

AMT: So, that goes back to your first point that this is a much wider discussion about how we see girls.

ALANA CATTAPAN: I think you started the conversation today by saying this should be a parent's most treasured moment when they find out whether it's a boy or a girl, and maybe we need to be questioning why that's the case. Why it is that the genitalia of a baby matters to who you think they're going to be?

AMT: Okay, well Alana Cattapan, thank you for your thoughts on this today.

ALANA CATTAPAN: Thanks for having me.

AMT: Alana Cattapan is a post-doctoral fellow at Dalhousie University's Faculty of Medicine, she joined us from our Halifax studio. If you have thoughts on this one, let us know. As you listen to the numbers coming out and I’ll make the point that this is one community that's been discussed and one segment of that community. You can tweet us we're @thecurrentcbc. Go to our website cbc.ca/thecurrent and click on the contact link. If you're joining us partway through you can download the podcast from the site or listen right there cbc.ca/thecurrent.

CBC investigation uncovers Canada's most dangerous railway crossings

Guests: Dave Seglins

ANNA MARIA TREMONTI: Hello, I'm Anna Maria Tremonti and you're listening to The Current. Still to come, journalist Sandra Martin has been exploring the changing landscape of death and dying and looking ahead to what taking ownership of death will mean to baby boomers and beyond. She joins me to talk about a good death in half an hour. But first, untimely deaths: where the rails meet the roads.

[Train whistles]

AMT: It has been a deadly week and a half at Canada's railway crossings. On Friday, one person was killed, another seriously injured in Brampton, northwest of Toronto when their car collided with a freight train. A few days earlier in southwestern Ontario, two women were killed when their car smashed into a high speed VIA passenger train. In both cases the crossings were marked by flashing lights, warning bells, but there were no gates, no barriers to block the roadway. Today, CBC News has launched a series of stories looking into Canada's most dangerous rail crossings and efforts to prevent more deaths and injuries. Dave Seglins is part of the team behind these stories and he joins me in our studio. Hi, good morning. What's going on here, Dave? What's behind the spate of recent accidents?

DAVE SEGLINS: Well, it's hard to say. I mean, these crossings where our rail lines intersect with our roads or sidewalks, even our bike paths have long been dangerous. We've gone through and combed through the accident records of the Transportation Safety Board, that's the independent agency that investigates accidents; makes recommendations to improve safety. We reviewed the records dating back to 2000 and discovered that over the past five years, there are 179 rail crossing accidents every year, so that's about one every two days. What's more, if we add in these most recent fatalities there, there have been at least 463 people killed at railway crossings since 2000.

AMT: 463 people. Wow, that's a lot of deaths adding up. Is the rate of rail crossing accidents getting worse over time?

DAVE SEGLINS: The crash numbers, they've actually declined since 2000, and significantly so there's good news there, but in the last five years they have leveled off so in other words, things have stopped improving.

AMT: So, what's being done about it?

DAVE SEGLINS: Well, short answer is a lot, but not enough. These crossings aren't just where the rail tracks meet the roadways. It's a kind of a jurisdictional tangle. They've got the railways involved, local municipalities, provinces, Transport Canada and together they've been trying to improve the safety but this involves 16,000 public rail crossings right across Canada, and it's been a long and so far, very unfinished process. We're going to get to some of that but I'd like to focus in on one community that has been struggling in recent years with what to do with all the rail crossings and that's London, Ontario.

AMT: And why London?

DAVE SEGLINS: Well, London, like many cities or towns across Canada, has grown up around rail lines. It's got CN, CP tracks running right through the centre, heavy populated areas, tracks across dozens upon dozens of residential streets and sadly, three years ago on one of those residential streets, there was a tragedy. 11-year-old Kendra Cameron, a little girl ran out along the sidewalk as a train was approaching and she was struck and killed. Now, I met with Kendra's mother. Robyn. She hasn't spoken to the media until now. She took me to the crossing. To this day, there is a large memorial there. Flowers, photos of Kendra, many teddy bears along the fence right next to the track. This crossing, the roadway, has gates, blocks the cars as well as warning bells and flashing lights, but it's also very open. There are some large swathes of green grass, pedestrian sidewalk. That sidewalk has no barrier, no gate, no special warnings that an 11-year- old girl is going to notice. Here's Robyn describing the day that her daughter was killed.

SOUNDCLIP

ROBYN CAMERON: [voice breaking] She ran in front of the train. I guess she was trying to play some sort of game with her friend. I don't know. I've never actually seen or heard her do that before. There is only one other incident and she was grounded for it so all I remember is I was driving towards here and I saw people on the side of the road and I ran up. I knew something was wrong and I saw her lying here.

DAVE SEGLINS: You live very close to here?

ROBYN CAMERON:[crying] Just over there. It’s all townhouse complexes and a residential neighbourhood around here, for the most part.

AMT: Such a sad story, such a terrible story. What happened? Did Kendra not see or hear the train?

DAVE SEGLINS: You know what? She probably did see and hear the train and that's part of the complication about rail crossings. Her mom says that people who live in this area, they're used to these trains and her daughter was too. Many times those trains will roll through and they'll stop. They’ll block the roadway, so everyone has seen adults climbing through the train sometimes, or racing to get across before a slow moving train blocks the road and sidewalk.

SOUNDCLIP

ROBYN CAMERON: She ran across the roadway and on to this stupid pedestrian sidewalk where there was no barrier. I don't know if she felt that she would beat the train. Usually it goes really slow, that day it was going between 60 and 70 kilometres an hour. So, I assume that she thought it was going to be the original speed that usually passes through here and she couldn't see through the brush, so she came this way to see at the same time, I assume.

DAVE SEGLINS: So what should be at that sidewalk?

ROBYN CAMERON: Some sort of barrier. They would have to be able to stop the pedestrians from running through there. If there was fence on both sides and a barrier, there would have been no way she could have rammed through there.

AMT: So, Dave there is no gate, no barrier on the sidewalk. Nothing whatsoever?

DAVE SEGLINS: None. And you know, all the warning systems at that spot, like so many right across Canada, are designed primarily with the motorist in mind, not a little girl on the sidewalk. We've looked at designs in Europe. Interesting. The Netherlands for instance, they have gate arms for bike paths, sidewalks not just the roads. But there are very few rail crossings in Canada that have gates specifically for pedestrians. But you know, let's put the pedestrian crossings aside. You might be surprised at the number of rail crossings that even have gates to stop the vehicles. We've got about 16,000 public rail crossings all across Canada. How many of those do you think have automatic gates that will come down and block the road? Take a guess, like a percentage.

AMT: Okay, with gates, maybe 80 percent have gates?

DAVE SEGLINS: 17 percent have gates.

AMT: 17, that's it? In the country?

DAVE SEGLINS: In the country, and then I want you to add into that, in addition to gates, the ones with just flashing lights and bells.

AMT: What are we talking?

DAVE SEGLINS: 22 percent. So put those together and you've got a third that have automated warning systems. That leaves close to two-thirds of all rail crossings that have what the industry calls, passively protected crossings.

AMT: So what is passively protected?

DAVE SEGLINS: Well, it's a fancy word for saying not very much. There is no automated warning system, no bells, no lights, just that white X crossing sign we've all seen, and perhaps, coupled with a stop sign.

AMT: So, if I'm in a car approaching a railway crossing there would be no indication that a train is approaching as well?

DAVE SEGLINS: Exactly. But I want to stick with London for a moment because after Kendra's death, it was December 2012, there was a lot of public debate and a lot of outcry about safety of the rail crossings in the city. We crunched the numbers and found that just a few kilometres west of where Kendra was killed on the very same CP Rail line, there's a crossing that is the most accident prone in all of Canada.

AMT: The most accident prone?

DAVE SEGLINS: That's right. So according to the Transportation Safety Board crash records, there's a crossing at St. George St right next--it's in a busy hub, there's a student area, residential area, a strip of bars at what's called Oxford Enrichment. That crossing has had 12 accidents at the same spot since 2000, more than any other single crossing in all of Canada.

AMT: And what kind of warning system is at that crossing?

DAVE SEGLINS: Well, until a few months ago, it had the X sign and the flashing lights and bells, but again no gate. Now CP Rail, they installed a gate in December after the 12th accident. There, a motorist allegedly tried to race through to beat the train. It was a young driver, about 20, he wound up smashing into it, totalled his car, suffered head injuries, and in the end he was charged under the Highway Traffic Act.

AMT: So, he was charged. It sounds as if the motorist is to blame for the accident if he or she is racing through a crossing where there are lights and bells going off?

DAVE SEGLINS: From the experts we've talked to, people on foot, cars, around the railways, they'll make mistakes, they are distracted at times, they do take risks and will break the law at times. For sure, people carry a lot of responsibility but I want you to hear from Richard Plokhaar. He's a rail safety consultant, he lives in the London region but does work for railways around the world. After Kendra's death, he got very involved in London and studied all of the city's crossings and concluded that there are widespread design flaws; problems given there are roughly two dozen freight trains that will pass through these residential areas every day.

SOUNDCLIP

RICHARD PLOKHAAR: They should have gates everywhere. Everywhere. And if I think about Global St., Waterloo St, where we have that really weird crossing, and it is simple to solve. There are some simple things like taking a paint can and making things more visible because that's the major problem, that people don't see the railway crossings here. If you think about the crosses that are on the roads painted, or that the signage approaching the railway crossing, it’s not always there, or broken or not properly done. It’s not only London, it’s everywhere, it’s Canada-wide that there is very poor maintenance of the warning devices going towards the railway crossing.

AMT: Is that true, Dave, that this is a Canada-wide problem? What do we know about the state of repair of Canada's rail crossings elsewhere like the Prairies, BC?

DAVE SEGLINS: Well, I tend to agree with them. I mean, CBC has been doing exactly this investigation. We've actually looked directly at the crossings and we've seen the most accidents at about 25 of them. We've seen the images. Many of these crossings have no gates, many have poor sight lines, they aren't terribly well marked, or what's worse, and this is very common, they are at intersections with complicated traffic lights, stop signs, then maybe the lights and flashings the bells for the for the railway crossings where motorists get confused and all sorts of areas where it's so close to an intersection that cars and trucks will get backed up over the rail track and wind up getting hit.

AMT: But there have to be standards that apply to railway crossings Who's watching over this?

DAVE SEGLINS: Transport Canada. They're the regulator and they're supposed to set and enforce the rules and I can tell you that gates are not required at all crossings, and the safety standards depend on each specific crossing; where it is, how heavily travelled it is. Now, over the last 20 years the Transportation Safety Board, the watchdog that examines all the accidents, they've been calling for tougher rules to the design of these rail crossings.

AMT: And what's happened?

DAVE SEGLINS: Well, good news and a little bit of bad news. First, the good news. In 2014, the federal government, after years of TSB recommendations and consultations too, because you’ve got the municipalities, the railways, provincial road authorities, they did pass new regulations so that's going to see some new standards slowly brought in for rail crossings right across Canada. How tough those standards are going to be, that's a big question but right now, railways and municipalities are going out there they're doing assessments at each crossing to look at which upgrades are going to be required, do they have to add lights, bells, gates. Also the roadways may be reconfigured, the sight lines but existing crossings are not going to have to meet those standards until 2021.

AMT: Why so long?

DAVE SEGLINS: Well, it is a massive undertaking, 16,000 public crossings. It could cost hundreds of millions of dollars and if you think about it, what do you think is the most effective way to prevent accidents at rail crossings?

AMT: Get rid of the crossings that are level crossings.

DAVE SEGLINS: Absolutely. And that's what's been done in parts of the country. There's been a focus on it in the Quebec-Windsor corridor, but not really elsewhere. There's been a lot of money put into building an overpass or an underpass, so you eliminate the intersection. But that is very expensive and it's not going to happen at every crossing. So then this becomes a big project for all these crossings and a choice. What kind of automated gates, bells, lights, let alone the redesign of highways and overpasses. What should be there given the risks, the traffic volumes, the number of trains that go through, and the railways in the local communities right now are in the process of trying to figure that out. What's needed? Are they going to be able to meet the standards over the next five years?

AMT: So how much does it cost to install a gate?

DAVE SEGLINS: You’ll find this surprising. CN Rail tells us it can be $200,000 all the way up to a million dollars to put in that automated system. It's not just the arm, it's got to have signals up the tracks that detect the train is coming, so between 200,000 and a million dollars per crossing. Cost is a huge issue, but the work, at least has begun.

AMT: So that is somewhat positive. What’s the bad news?

DAVE SEGLINS: Well, as you may have been hearing on the news this morning, we've learned that Transport Canada has been doing its own risk analysis. In fact, they've got this system and it's been designed by civil engineers at the University of Waterloo. It evaluates rail crossings, calculates risk based on frequency of past accidents but also you know, the volume of rail traffic, the numbers of cars, the speed limits on the roadways and it allows them to generate a list of Canada's highest risk crossings. You know we have this list, 500, that could predict where accidents are most likely to happen.

AMT: Okay, so they have a list of 500, what's the problem?

DAVE SEGLINS: The problem is Transport Canada hasn't shared their rankings with the public or with local communities. Off the top you mentioned that fatal crash last week in southwestern Ontario. Two women in a car killed by VIA train that happened at one of the crossings that Transport Canada had already identified. Now, this is a list from 2014, identified as the number four highest risk crossing in the entire country.

AMT: And the local officials didn't know?

DAVE SEGLINS: Local officials did not know. Not the local mayor, not the chief road engineer for Middlesex County. We spoke to him, his name is Chris Traini and when I told him this, he was like wow, news to him.

SOUNDCLIP

CHRIS TRAINI: Well, it's very surprising. If there was an issue there that they had identified our you know, never mind top four, top 20, top 50 in Canada, then I feel they should have a duty to consult with the municipality and with the railway. And if there's additional safety measures that they feel needed to be installed or enacted at that location, you know that they should come to the table and let us know.

AMT: Or at least pick up a phone and let them know. Dave, what is it that makes that crossing in southwestern Ontario such a high risk?

DAVE SEGLINS: We spoke directly to the professors who designed Transport Canada System. They are from Waterloo, as I said. Their software tool is called GradeX. One of them looked into the data as it currently exists for the Melbourne road crossing and he told us it's ranked so high because even though it's wide open, rural fields, you can see the crossing from a long way off, there are more than a dozen trains that go through there each day. Most of them high speed passenger trains. The roadway has a speed limit of 90 kilometres per hour and the crossing is marked only with lights and bells and there is no gate so tragically, that puts that crossing at a far greater likelihood of accidents.

AMT: And why isn't Transport Canada sharing that information about the top 500 most dangerous with the local communities?

DAVE SEGLINS: They say this is an internal tool. The list that we have was generated by this software from 2014. They say that the data will change over time, however I have to tell you, CN Rail that owns that actual track there told us there have been no upgrades or changes there in the past two years. Now, the designers also operate something, a website called GradeX.ca. We went to it, signed in, logged in, or tried to sign up for a membership to see the details for each crossing. We've been denied. Now the access is controlled by Transport Canada, but we know that this system was initially designed to help them decide where they're going to spend their dollars and how they're going to prioritize all these upgrades.

AMT: And why not make it public?

DAVE SEGLINS: I'm not sure entirely. Maybe because they know they can't pay to upgrade them all at once. So, if you tell everybody that these are highest risk you are going to have a problem. They do generally, because the federal government is involved in the funding model, they help support 60 to 70 upgrades a year. But, I can tell you when I talked to the Transportation Safety Board, the agency that winds up investigating the accidents of fatalities, they certainly think that this information should be made public now. Here is Dan Holbrook. He's a manager for rail investigations for western Canada.

SOUNDCLIP

DAN HOLBROOK: There's no point in keeping valuable safety information secret. Get it out there. If something can't be done by somebody to improve it, maybe it can be done by somebody else. I don't see anything to be gained by not being entirely transparent with safety related information.

DAVE SEGLINS: Have you seen the GradeX system?

DAN HOLBROOK: No, I haven't.

DAVE SEGLINS: Do you have access to it?

DAN HOLBROOK: No.

AMT: That’s extraordinary. So even the TSB that investigates the accidents does not have access to the list?

DAVE SEGLINS: That's right, but they could get it if it became relevant. I mean, keep in mind this system is sort of a predictive tool. By the time the TSB gets involved, there has already been an accident. They're going to look at that specific one so what's the value of a list looking forward?

AMT: So what's the fix long term in Canada? What's going to happen to improve safety at rail crossings in Canada?

DAVE SEGLINS: Well, like I said, there are these new standards, upgrades are going to be required within five years. Some in the municipal sector though are worried you know, there's a deadline, there are a lot of crossings, will they have enough money? I can tell you that the TSB is going to be watching this closely. They've been calling for these changes for 20 years and despite these regulations they point out look it's still too early to know. I think it's just too early to say.

AMT: Well, let's go back to London, Ontario, the spot where 11-year old Kendra Cameron was killed. Has something changed there?

DAVE SEGLINS: No, not much. I mean the city cut down some trees and shrubs so the people can see the trains coming better. The railway did go in and they fixed some holes in the fences along the corridor to try to discourage people who are using the tracks as a pathway through the city, and CP Rail also went into area schools after Kendra's death and they talked to children about the hazards of trains and rail crossings. I can tell you the Kendra's mother, Robyn, I mean she's disappointed there has been no pedestrian gate installed there. This crossing remains very open, as I said, grassy, lots of people walking through, sometimes trespassing, cutting corners and even jumping through these trains so for all of our discussion about the design problems, Robyn says it is also people who are going to have to change because she's convinced that her daughter ran out that day in front of a train only after seeing adults make a race for the crossing.

SOUNDCLIP

ROBYN CAMERON: Well, I think society needs to understand that we show the children that it's okay to do these things. There are a lot of older people out here walking across the tracks and jumping over the trains when they slow down. And that as a society we need to pull together and make sure that we make it safe for the innocent people; the people that don't know any better or that misjudge the situation.

AMT: That’s so sad. One misjudgment and an 11-year-old, gone. That's something to think about. We all go over rail crossings all the time.

DAVE SEGLINS: Right across the country.

AMT: Dave Seglins, thank you.

DAVE SEGLINS: Thank you.

AMT: Dave Seglins is a CBC reporter based in Toronto. To see a complete list of high risk crossings and photos of Canada's most accident prone rail crossings, you can check out cbcnews.ca and if this sounds way too familiar for you, let us know what you're thinking. If you have concerns about safety at rail crossings near you, if you've had a close call, send us an e-mail from the site cbc.ca/thecurrent. You can also tweet us we @thecurrentcbc.

[Closing music]

Doctor-assisted dying: Journalist examines how Canadians grapple with death

Guests: Sandra Martin

ANNA MARIA TREMONTI: Hello, I'm Anna Maria Tremonti, and you're listening to The Current.

SOUNDCLIP

VOICE 1: I hope that parliament will act.

VOICE 2: Sue hopes that parliament will deal with this issue once it reconvenes after the election. She realizes that it may be too late for her, but for all other Canadians in a similar predicament, this issue should be resolved in parliament.

AMT: Well, that was nearly a quarter of a century ago now, but in the long and contentious debate over assisted dying in Canada, the voice of Sue Rodriguez still echoes loudly today. She is the British Columbia woman who, dying of ALS, took her fight for assisted dying all the way to the Supreme Court. And, alongside her lawyer Chris Considine, held that press conference after losing their case. That was in 1993. Now Canada's parliament will finally resolve this issue, by order of the Supreme Court. A ruling last year concluded that the ban on assisted dying violates the right to life, liberty and security of the person. And new federal legislation governing physician-assisted death is expected to be introduced any day: parliament has a court-imposed deadline of June 6th to have new laws in place. However, there's no such deadline for society to come to grips with the new reality of how we die. And that goes especially for a baby boom generation that will be taking ownership of life's ultimate decision as no generation has ever done before. Journalist Sandra Martin has been exploring these issues in her new book, A Good Death: Making the Most of Our Final Choices. And Sandra Martin joins me now, hi.

SANDRA MARTIN: Hello.

AMT: Just to listen to Sue Rodriguez all those years ago, eh? It’s quite moving.

SANDRA MARTIN: I found it really moving, because you can barely understand what she's saying. I mean, her lawyer, Chris Considine, is actually interpreting. Because that's how ill she is at that point.

AMT: So advocates on all sides are waiting, wondering what is going to be in this federal legislation. What are you watching for?

SANDRA MARTIN: I think that what is going to happen is that the federal government is going to be very cautious. I think that it is going to retreat from some of the recommendations that the parliamentary committee suggested we should have. And I think that's going to be difficult for quite a lot of people.

AMT: So, for example, the parliamentary committee suggested assisted suicide be extended to what it called mature minors, people under the age of 18 who were mature in their thinking; those with dementia. You think that's the kind of thing they’ll back off?

SANDRA MARTIN: The mature minors, they asked that this be held off for about two or three years, to see how that worked. But I mean, mature minors are able to make other medical decisions in various parts of the country, so why can't they make this kind of decision? That's their thinking. But one of the real issues is dementia. What the parliamentary committee recommended was that someone who has a diagnosis, at that point, while that person is still competent, that person should be able to make a decision and to say, when I get to a certain stage where I can no longer talk or I can no longer feed myself or recognize my family, whatever that is. That at that point, I would like to apply for physician-assisted dying. Even though by that point, the person is probably not going to be competent.

AMT: And you know, just today, there's a story in the news out of Sherbrooke, Quebec, about Jean Brault, who qualified under Quebec’s doctor-assisted dying regulations, except for one thing: he wasn't dying. He had ongoing complications from a blood clot on his brain stem from when he was a teenager, and then his situation worsened, and he essentially went on a hunger strike until his body deteriorated. And we just learned that he died. But that raises, even in Quebec’s legislation, there are others who want to take advantage of this who cannot. And this adds to the debate, I guess, eh?

SANDRA MARTIN: Well, one of the things with Quebec’s legislation: Quebec is, you know, the province that has really pushed this issue and is so far ahead of everybody else in the country. But when that bill was being debated in the national assembly, they compromised to make it pass. And the compromise was to go from terrible suffering to end of life. And that's what has happened in the case of this poor man. He was not at the end of life, he was just suffering intolerably. So what did he do? He decided to starve himself until he was at the end of life. But of course, many people don't realize. Going without food isn't going to do it. You have to go without water. So he spent, what, 50 days going without food and then eight days going without water, until finally, he was near death. And then he was able to successfully apply for physician-assisted dying. So that's a compromise that was made, and whether that compromise is going to end up with a challenge at the Supreme Court, because end of life goes beyond-- is not as far as Carter. Carter said suffering, it didn't say terminally ill.

AMT: Mmm. Talking about death, and suicide, in particular, has been taboo for so long. How ready is Canada for this debate?

SANDRA MARTIN: I don't-- I think that-- It's a very difficult issue and I think we need to talk about it, and I also do, I'm very sympathetic. Because I think we are doing it very quickly. The Carter Decision was February 2015, and the government of the day was given a year to come up with legislation, should it choose. And the Harper Government really didn't do anything for at least seven months. And then there was an election, they lost, and so on. So parliament wasn't recalled until early December, so that wasn't very much time to introduce legislation, and to discuss it, and to have people across the country talk about it. So that's one of the reasons that I’m hoping my book will start a conversation, because we are trying to do something very, very quickly; but that does not mean it shouldn't be done.

AMT: And it's interesting, we're having this conversation against the backdrop of an entirely different story dealing with suicide. And that, of course, and then of course is in Attawapiskat. But I guess it's just important to say that in one case you're dealing with people who are in despair for situations that can be changed, not about illness, and not at end of life.

SANDRA MARTIN: And also, these young people in Attawapiskat are not talking with their doctors. They're not talking with their families. They're taking drastic decisions and they're making suicide pacts. That is not what this is about. This is about an individual choice that is discussed with more than one doctor. That it is a conversation about a health situation that has gone on for a long time, that is intolerable, that there is no treatment that is acceptable to the patient. So it's very, very different from Attawapiskat. But you're right. It is a serious issue.

AMT: Well, and if we're going to have this discussion, it's important to parse that out and to, separate those strands.

SANDRA MARTIN: I agree.

AMT: But let's talk about the kind of work you did as you explored all of this. We have talked to people on this program, to the people who were related to Gillian Bennett, who you profile; Susan Griffiths. There are many people who didn't make headlines who you found. Tell me about some of the people whose stories moved you.

SANDRA MARTIN: I'd like to tell you, then, about Kim Teske. She's a young woman. I did write about her in the Globe and Mail, but I don't think she became a household name. She was born into a family that carried the Huntington's gene. And that is a terrible neurological disease that is hereditary. If one of your parents has it, there's a 50 per cent chance that you are going to have it. And it is a combination of Alzheimer's, schizophrenia, and Parkinson's. So it's got motor issues, it's got rationality issues, it's got all sorts of things. She had seen her older brother in an institution, and she didn't want that. And there was no way that, her doctors were not going to help her die. So, she didn't want to go to Switzerland, which is, you know, become a death tourist, which some people do if they have the money, the independence, whatever. So what she did was she decided to go without food and drink. And I didn't think she could do that. I mean, can you imagine going without food and drink until you die? But her family supported her, and she did. It took 12 days and she died. And she wanted her message out. And so that's why I wrote about her. And I must say, I still think of her. I still have a little figurine that she gave me at some point, and I look at it on my desk.

AMT: I have an image in my head, because you write about her turning away from the people, like, turning herself to the wall so she didn't have to look at the people who were trying to fight this with her.

SANDRA MARTIN: It's very sad. I mean, people's lives are full of tragedy, full of hope, and often full of success. And one of the things I found in writing this book and talking to people is people say, oh, you're so morbid. I'm not morbid. I find these stories so heartening, because you learn about how families help each other out. How they support each other, and how difficult it is for families to understand why someone they love wants to die.

AMT: It is about life, isn't it? Because death is part of life, but we don't think of it that way when it comes to end of life, always.

SANDRA MARTIN: And that's actually one of the things that the Carter Decision was about, is that people who have an intractable illness or a disability of some sort, such as Sue Rodriguez, who can't end their lives. They have to end their lives sooner so they’re actually denied a portion of their lives, because if they don't end their lives sooner, they're not going to be able to end them.

AMT: Tell us about Austin Bastable.

SANDRA MARTIN: Austin Bastable is someone that I never met. But he was born in England, he came to Canada. He had terrible multiple sclerosis; it went on and on and on. And he was profiled, actually, a long time ago on Man Alive, a CBC program. He wanted to die and he wanted to be the new Sue Rodriguez, so this was just after she’d lost her challenge. His family loved him. He was just a lovely guy. And he wrote a lot, he was very articulate. So one day he tried to kill himself. And he had been saving up pills. His wife came home from work and found him, and immediately called 9-1-1. He woke up three days later in hospital, and the first thing she said to him was, I'm so sorry. And the reason she said that as she explained in Man Alive, is because I now understand. I could put up with your suffering, but this is about you. This isn't about me. This is about you and your life. So what they did was they ended up getting in touch with Jack Kevorkian, Dr. Death, in the United States. And Austin Bastable became the first person who went-- first Canadian who went to have help dying in Michigan with. Jack Kevorkian. And afterwards, a couple years afterwards, Austin Bastable’s widow was talking to a journalist, and she said, no, this isn't the way we wanted it. We wanted him to die in his own bed, in his own home, surrounded by his family. Not traveling in pain to another country.

AMT: People-- there's a constant there, they feel they have nowhere else to turn. There was a Canadian who was quietly helping people die. Tell me about John Hofsess.

SANDRA MARTIN: John Hofsess is one of the pioneers of the right to die movement in this country. And I think there are a few things that are important. If there is no help, people are going to find someone underground. And John Hofsess was supplying that service. He was very important to Sue Rodriguez, because he was the first person who actually listened to her. Her doctors were saying, oh no, come on, we've got these devices, you can use this, you know. That is not what she wanted, and John Hofsess listened to her, and he molded her campaign so that she became a human face to us. I mean, back in the early ‘90s, this concept was weird. And so she made it human. And she was a compelling figure, and those are the good things that John Hofsess did. In the later ‘90s, discouraged by the fact that there was no law, he started going from organizing a society that gave people information, to actually helping them die. And among the people he helped die was the poet Al Purdy. Now, Al Purdy, who I had known as a wonderful poet and kind of exuberant, crazy guy. I liked him very much. he was a wonderful mentor to younger--

AMT: [interposing] Well, a Canadian icon, literary icon.

SANDRA MARTIN: Yes, for sure. Anyway, he was very, very ill. He was living in British Columbia in the winters, he was a member of the right to die society, and he had lung cancer. He had a number of illnesses, he was dying. And so he asked John Hofsess to help him die. And John Hofsess did help him die.

AMT: And this never came out until recently, right? You actually have a lot of detail in your book, but we didn't know this about Al Purdy until the last several months.

SANDRA MARTIN: Well, a lot of people who have help dying, it doesn't become public. I mean, there is a story in my book about how did George V’s doctor helped him die. And that didn't become public until the doctor's memoirs were published 50 years later. So there is an underground, but it all depends, usually, on the compassion of the doctor, not the wish of the patient. What happened in this case was the patient, Al Purdy, said, I want to end my life. But he was in favor of euthanasia. But, you know, his wife was not wanting the huge hoopla that might encounter it. And so there was a disagreement about when this story should become public. And John Hofsess himself tried to make it public in the last year or so.

AMT: You say between 1991 and 2001, he helped eight people die. He would actually go to their homes, and then there would be no sign that he'd been there.

SANDRA MARTIN: The thing that's different between John Hofsess and Jack Kevorkian is, well, first of all, John Hofsess was not a doctor. And second, John Hofsess went to the patient. With Kevorkian, the patient had to come to him. Which is one of the reasons why Sue Rodriguez didn't go there, because she couldn't fly to him. But John Hofsess couldn't drive, so he had an assistant. And she could drive; she could do all the mechanical stuff. And they developed a technology. There were a lot of people in those days who were talking about technology, about how you could do this without doctors. Because that meant that individuals could control their own exits. So they developed a technology, and they went, and they, you know, Al Purdy was very, very ill. I mean, he'd had the final visits from so many, well, Margaret Atwood, would have been out to visit, many people had been out to visit him because he was dying. But this actually shortened his life by what, a few days, a few weeks? Who knows. But a short amount of time, and he died peacefully.

AMT: How dangerous was it to be doing what John Hofsess was doing?

SANDRA MARTIN: At the time, there was no law against committing suicide, but there was a law against assisting a suicide. And you could have 14 years if you were found guilty, you could have been charged for, and put in prison for 14 years. Now, after Sue Rodriguez died-- Sorry, before Sue Rodriguez died, after the Supreme Court challenge in 1993, the B.C. government changed its prosecutorial guidelines. So that they wanted this kind of death, for it to charge somebody, they wanted to be in the public interest. And so, in fact, no one was charged with aiding her suicide. There were people investigated. There were people who had inquiries from the police, like Svend Robinson, various other people. But no one was ever charged. So whether he would have been charged, we don't know. Whether John Hofsess would have been charged for helping Al Purdy, an imminently dying man die, we don't know. But certainly, by the end of John Hofsess’ life, he had it in his mind that he would be charged today.

AMT: It's interesting, because this is a case of society moving faster than legislation, and then legislation trying to keep up with some societal views. But, of course, it's not the only societal view. There are those who still argue that if we had better palliative care in this country, we would not be having this discussion. You've also explored that, what have you found?

SANDRA MARTIN: To me, palliative care is part of physician-assisted dying. They aren't two separate things. We should have both. Even Dr. Larry Librach, one of the great pioneers of palliative care in this country, argued at the Carter trial in B.C. that it doesn't work for everybody. Now, I think we should have more palliative care, of course we should. But I also think this is about a choice. And as Dr. Librach said, for some people, palliative care doesn't work. It's not a lot of people, but it's some people. And for those people, there should be another option. And I think it's also about autonomy rights. If this is your choice, if you can talk to your doctor and another doctor and you've complied with the requirements, why shouldn't you be able to do it if you have intractable suffering? Most of us won't, this will be a very rare thing. But that option should be there. And in countries where the option is there, palliative care is actually improved. And the reason is pretty simple. You go to talk to your doctor; and most people don't talk to their doctors about end of life.

AMT: Well, how much access would Canadians have, anyway, to palliative? Like in a home where they might have a terminal illness, or they might be dying and they want to hasten death. Are there doctors available, are there palliative care doctors available everywhere in this country?

SANDRA MARTIN: There aren't palliative care doctors available everywhere in this country. I wrote about a man in my book called Grant Crosby, who was an advertising executive and he had a fast progressing dementia. He had Alzheimer's. But he wasn't calm, he was agitated, he was frustrated. He had been a lovely, lovely guy, and suddenly, he was very difficult to control. You couldn't leave him alone for a second. He ended up in a hospital bed, drugged into calmness for four or five months, before his family could find him a place in a behavioral unit. And they thought that because he'd been in that behavioral unit, and then he was moved into another part of a long term care facility, that he would have palliative care. But they didn't say, what exactly do you mean by palliative care? And it turned out that, it was a weekend, you know, he needed help from a doctor; there was no doctor available. And that often happens. So should he be sent to hospital? Well, if he goes to hospital, what's going to happen? If you go to hospital, you end up in an emergency ward. His wife wanted him to die peacefully. It took a week for him to finally die, because he finally, at the last minute, got some extra morphine, and, you know, the kind of things that you're supposed to be able to have with palliative care for symptom control, to help your anxiety, and your breathing. He was drowning in his own phlegm.

AMT: So from talking to all of these people and looking at their deaths, what's your takeaway? If you were the government, what kind of legislation would you be bringing in?

SANDRA MARTIN: I think the government is in a difficult position. I would be bringing in more permissive legislation than they are, I think that they're going to bring in. Because we don't want the legislation, at least I don't think it should, be subject to challenges at the Supreme Court. That's one thing. I would bring, I would follow the recommendations of the parliamentary committee.

AMT: And you also think rules can be too lax. Tell us about Belgium and how their rules have developed.

SANDRA MARTIN: Belgium, there's nothing wrong with the law in Belgium. It is based on the law in the Netherlands, which is kind of the gold standard in the European model. But what's happened in Belgium is, as we’ve seen, actually, with other parts of Belgium, there's a lot of sort of loosey-goosey things in terms of how, who regulates things. So that a lot of the people who are performing euthanasia in Belgium are also on the oversight board. So there's a little, there's a problem with reporting, there's a problem with some reporting. Now, there has been a doctor who is being investigated now. Now, that's a good sign, because he was, perhaps, they're saying that he has been a little too easy with allowing people to have euthanasia.

AMT: And there's a lot of talk about doctor shopping in Belgium, that people are looking, they can always find someone. And I don't think there's a restriction on age.

SANDRA MARTIN: No.

AMT: Necessarily.

SANDRA MARTIN: That’s right. Yeah. There isn't a restriction on age.

AMT: So people who are against any kind of legislation here point to Belgium as trouble. And they say that's the slippery slope.

SANDRA MARTIN: But in fact, if you look at regimes such as the Netherlands and Belgium, and they keep their statistics, and Oregon, the American model, is different from the European model. We have 20 years of statistics that actually show there is no slippery slope. So what we need is we need national legislation so that we can set up an oversight board and we can have an organization that actually counts all these people, and how did they die, and what happened. We need that kind of recordkeeping.

AMT: We can talk about governments and doctors, but when we talk about how we want to die, what's the responsibility of the individual?

SANDRA MARTIN: This is about individual choice. So the responsibility of the individual is very high, and we need to talk about it. There is such a thing as doctor-patient confidentiality, but I know from my experience that you really need to talk to your family. Yes, it's your choice, and you can do with your doctor alone, but your family, you don't want to leave your family feeling in a quandary and just devastated by your choice. So I think you need to talk to your family, you need to talk to your doctor, you need to talk to your lawyer. You need to say that you've got your affairs in order. You've got a will. You've got power of attorney for health and for money and you’ve organized all these things, and you've talked-- Gillian Bennett, you've mentioned at the beginning, she talked to her family for years and years and years about self-determination and what she wanted. So that it wasn't a shock to them.

AMT: Remind us how she died.

SANDRA MARTIN: There's a wonderful quote from her husband, when the police came and asked him what happened. He said, I don't know how she got the Nembutal. But what she did was, it was planned very carefully. I mean, she was a psychotherapist. She had access to these drugs. I don't know how she had access to the drugs. And that's something else, if I can just digress for a second, people ordering drugs off the internet from various countries, sometimes that drugs don't arrive. Sometimes they're compromised. People do dangerous things when they don't have--

AMT: [interposing] That’s right, and sometimes the drugs don't work in the way that you think they will, because of your own physiology.

SANDRA MARTIN: I have many stories of people who've botched it in my book. So anyway, to get back to Gillian Bennett, she planned it, she told her family, she didn't tell them when. But they organized things, so that there was going to be a website. Now by then, she was really having a lot of trouble keeping track of what she was saying, and what she wasn't saying, so they edited the website for her. And it was organized so it would go live after she died, but her family did not know exactly when she was going to die. And so one morning, she decided that that was it. And she dragged-- you don't know whether this was part of the dementia or what was happening, but she dragged her mattress out onto the lawn, and that's where she took the drugs and that's where she died. Now, why she dragged her mattress out there, I don't know.

AMT: And she couldn't be with her family, because they couldn't be complicit.

SANDRA MARTIN: And that is what she was probably thinking. But, I mean, she could have been in a different room, but that is another thing. You have to die alone because you can't be there for fear that, you know, that you might be arrested.

AMT: So what's this been like for you to talk to so many people, including those who have botched, like their families, somebody who has botched it. To see what people go through. What do you think about now that you didn't before?

SANDRA MARTIN: I think about how, it's been difficult, but I haven't found it-- I found it heartening, I said that before. The way people love each other, and the way they help each other, but it's certainly something I don't want to put my family through.

AMT: Are you having discussions you didn't have before since writing this book?

SANDRA MARTIN: Oh yes, I am the dying bore at home, I can tell that.

[both laugh]

SANDRA MARTIN: Oh, don't! But yeah, they know that... Of course I, we all like to think we're going to live forever, but yes, if I get a serious illness, I'm not going to give up immediately. This is not about defeatism. This is when life becomes intolerable. So yes, I am going to have treatment, but I’m not going to have fifth or sixth or seventh stage chemo and some experimental stuff, no. I am going to ask, as soon as I get a diagnosis, I’m going to ask for a palliative care consult. Not because I want to die or think I’m going to die, but because it's about symptom control. And I'm going to make my affairs in order, and I’m going to talk to my kids and my family. And yeah, I hope we can all be there together and it will be peaceful, and they won't have horrible memories.

AMT: So you're a great communicator about other people's lives and deaths, so it just makes sense that you'll keep talking as well. Sandra Martin, thanks for coming in.

SANDRA MARTIN: Thank you.

AMT: Journalist Sandra Martin, author of A Good Death: Making the Most of our Final Choices. She joined me in our Toronto studio. Over to you, what are you hoping to see in the new law on physician-assisted death? Send us an email through our website, cbc.ca/thecurrent, click on the contact link. You can find us on Facebook, you can tweet us, we are @thecurrentcbc. That is our program for today. Coming up tomorrow on The Current, we’ll hear some surprising insights on a different topic. I’m going to be joined by a researcher who's been going through Disney movie archives, paying special attention to the princesses and just how much on screen time they spend speaking. Joining us tomorrow to find out whether Disney princesses of today have more or less time to talk than Disney princesses of the past, we’ll have somebody who's actually gone through all of the dialogue. And while you ponder that, here's a bit of music from a classic Disney film, this is “I'm Wishing” from the 1937 Disney production of Snow White and the Seven Dwarves. I’m Anna Maria Tremonti, thank you for listening to The Current.

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[Music: “I’m Wishing” from Snow White and the Seven Dwarves]

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Apr. 13, 2016 Episode Transcript

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