The muscles hurt so much that I want to take a knife to them and slice them open so the blood can squirt it out and give me relief.

Helga Reimer spends her days wishing she could die. A stroke left her unable to move one side of her body and she's always in pain. 

Cheers.

They called me "fiercely independent" and now I'm dependent. Not fiercely dependent yet but I'm on the way and while I'm still in my right mind and I can make my own decision, I would like to say "I'm getting out now. I've had enough." I'm going to be 80 years old in April. I've lived my life, right. I grew up during the war and after the war and everything else but I've lived my life. I worked 53 years of my life until the day of my stroke. So I've done my duty. Even though everybody wants me here and I probably can do a lot or could do a lot to contribute more if I wouldn't have this pain all the time. As of June 17, 2016, Canadians with a terminal illness have an alternative to their suffering – they have the right to choose when they die. Government officials say the new legislation strikes the right balance between those seeking an assisted death and protecting the vulnerable. But many people are unhappy with the outcome. The late Dr. Donald Low made a plea for assisted death three years before the law came into effect.

Why make people

suffer for no reason when there's an alternative? I just don't understand it.

Low's wife, Maureen Taylor, has continued fighting for access to assisted dying. Seven days after he was diagnosed with a mass in his brain, I mean we didn't even know if it was cancer at that point, he was telling me that he wanted me to investigate whether or not it would be possible for him to go to Switzerland at some point to have assisted dying. So he had already decided one week into his diagnosis how he wanted to die. Eva Goldfinger had to watch her mother's mind and body deteriorate before her eyes.

My father died in 1984 and by that time, my mother was already beginning to show just the very start of what I would have called, you know, forgetful behavior and unfocused behavior. These are still the happy times and then you see a change. She was going to New York one weekend and I took her to the airport and when I brought her back from the airport on Monday, I had taken her early Friday morning, I smelled something really strange and noticed that the oven had been left on and she had actually left it on from Thursday. I didn't smell it when I came to pick her up and this charred like, it was this big from a big potato cake. The frightening thing about that was that it could have started a fire and there are all kinds of elderly people in that building. It would have been very dangerous and it was then that we decided that she has to go to a home.

This was in 1974, when I got married. She's got an aware, intelligent, funny, happy face and that was my mother, with her wig and all. As time went on, this was '96, you can see she's barely getting her smile on. So year by year, you could see how she's deteriorating.

Eva is worried she might face the same fate. See, it says written by Eva Goldfinger and I can't even play it myself.

I started to see that she was getting foggy. She wasn't able to focus, she had to keep adding up the same numbers over and over and over again and the job that she had, she was getting income, so it was her responsibility to do the bookkeeping and she couldn't do it anymore.

So you asked me what I'm noticing – I'm noticing that I'm adding up the same numbers over and over again. Bill C-14 is designed to help everyone but so many feel that it's still not good enough. The qualifications that are laid out in the legislation mean that the patient has to be in an advanced state of their disease with intolerable suffering.  But they also have to have a death that is 'reasonably foreseeable' and you probably know that this is the phrase that's causing some confusion and some consternation 
because there are many people who have been diagnosed with a disease that makes them suffer, either physically or existentially, but it's hard to say when they're going to die.

Because Helga's death is not reasonably foreseeable, she doesn't qualify for an assisted death in Canada.

They wanted to please everybody and pleased no one.

Least of all, all the people like me. 

ALS people, Parkinson's, MS, Huntington's, all those diseases where you cannot foretell the outcome, right. I could live to be 100 but who wants to be 100 in my condition? Are you kidding me, you know? Just step into my shoes for 24 hours and see what it's like, right. Every little thing that I do is done with pain and effort and takes about three or four times as long as normal.

Dr. Joseph Chandrakanthan says the government is misguided with their efforts to help the dying.

Very often, if you go right into the heart of a patient's case and find out why they are coming to this level, it's very often out of lack of care and out of certain frustrations. This, I speak from my own experience with a number of patients who, at some stage, would say "Oh, I wish I am dead," you know. The reason being, they feel the care that they require, care in terms of presence, care in terms of acknowledgement, acceptance, compassion, is not available anymore and that I think reflects badly on our society. I do think that good palliative care will be enough for the vast majority of people but it won't be enough for absolutely everybody. So I still say we will always need the choice of an assisted death for a minority of people.

For Helga, the new legislation doesn't go far enough.

The lawmakers don't have any common sense, in my opinion, because they do not want to or they cannot put themselves in the the patient's condition and nobody really can, unless you're in that situation. It's not a life it's just creeping around the edges, right. I don't find any joy in life anymore because I'm in constant pain as we speak.

For people who want to die, the idea of suffering is worse than death itself. So I ordered this book and at the time, I think I could have been arrested for even having it but it's called 'The Peaceful Pill' and it's made by a couple doctors. The Peaceful Pill Handbook, a couple doctors in Australia. So I downloaded it for $80 and they tell you what are the peaceful ways that you can die if you don't have an assisted death. One of them was the bag over the head. So have you heard of this? 

You get canister of, what do you call it? Helium. So Don said this actually sounds like a pretty good way to die. He thought that would be fine. But I went to a party store to get a tank of helium. I was nervous because I thought if I use my credit card, they'll be able to trace it back to me later because who's going to have to get rid of the tank? Me. But it didn't matter because helium, there was a shortage of helium and they had no tanks. It was like "Oh my God, I can't even do this right." 
We actually had to think about whether we could pull any of this off

and give him a peaceful death without landing me in jail. If you'd gotten a hold of the helium tank, do you think you would have gone through it?

Yeah.

Left with no other option. Helga has applied to die in Switzerland.

This is my girlfriend that I went to school with in Germany. She was here in 2012 just before I moved. She's also from, you know, she's very sympathetic and she said "Let me know when you go to Switzerland, I'll come and see you there" right.

I had to tell it may not be or it will take a long time. I will have to get my ducks in a row first and make sure that when they give me the initial green light that I'm going stay there and they give me the final green light, I'm not coming back, right. She said "Oh, I want to hug you one more time."

I think if assisted death had been legal when Don
was sick, there would have been this dance between the two of us because he was clearly not enjoying the last, I'd say five months of his life. He had terrible issues around hearing, everything was roaring in his head, to the point where he couldn't participate in conversations. He wasn't, he had so much fatigue, we were barely leaving the house. People would come and visit and they'd say "Oh, you look so good" and he'd think "I don't feel good." You know, but it's it's something, it's existential suffering, right, he wasn't in pain, thank goodness. So I think this dance we would have done would have been him trying to say "I think it's time" and me trying to say "Give us a little bit longer" and you know, eventually, I think we would have arrived at a date that might have only been a few weeks to a month earlier than when he actually died but at least i wouldn't be haunted by the knowledge that he wanted an assisted death and I was never able to get it for him and I was a coward in a lot of ways because we were worried that I would be arrested. 14 years in prison, that was what I would have been facing with jail time, plus I couldn't figure out a way to do it where I was guaranteed that it would work. The worst thing that would happen is that he wouldn't die right away but that he would live and suffer. So I mean, I'm so glad that that time is over for me. I barely slept, just trying to figure out how to help him and at the same time, I wanted him around forever.

I think my children have seen my mother go through the process, they've seen the stage at which it's no longer worthwhile and they're totally on board with it. So I'm not worried if I'm going to 
die too early. I'm much more worried if I would die too late.

The nurses had said "She doesn't look like she's going to last that long" and I see her in the bed in the emergency, not an emergency ward but in the high care ward and she's bloated, she's completely bloated and she's got an intravenous on and I asked "What's the intravenous for?" and I see that her legs are like really, really swollen up and they said well, they need to dehydrate her and then they're hydrating her again.

She was attached to a hydrator and I said "What the heck are you doing that for?" You're hydrating her and then you have to dehydrate her. Clearly, her body can no longer deal with that stuff and I said to the nurse, and the doctor that was there at the time, her instructions were very clear that she wanted to not have her death prolonged and what you're doing is you're actually making her suffer. This is horrible she was black and blue from all the needles and I made it very clear that as her voice, I have it in writing and they had a copy of it,  
I would like them to not treat her at all, just make her comfortable and if she's ready to die and let her die and as soon as the doctor walked away, he went to the desk and wrote something, and as soon as the doctor walked away the nurse came up to me and she was very sweet, she said "You know Eva, you need to know that he didn't follow your instructions. He instructed us to continue to hydrate and dehydrate her"

and I was so angry. I stomped over, made him hang up the phone with whoever he was talking and I said "You go over there right now and you change those instructions. How dare you do that" and he said "Well you know, I'm Catholic. I don't believe –" I said "I don't care what you believe, then don't do it for yourself or your mother but for my mother. I have the right to make the decisions, not you" and so he went back and he changed it and it was already going to be sabbath, so I went home and a few hours later they called to say that she had died. I mean they were – that's not helping a person, that's disgusting and so she died and I had her body watched and taken care of. Ultimately, people need to know that they have control over their own lives.

Sandra Carpenter has a type of spinal muscular atrophy. She started a group called 'Project Value' to change the way people think about disabilities. They have concerns about what this law might mean for them.

My mistake on the legislation itself is that I really don't want to see the society around us using it as an excuse for 

providing substandard support or care for people. Like, I don't want to see, you know, 20 years down the line,

people say "Well we'll save a lot of money if we just, you know, allow people to sort of off themselves." So I think it was, personally, I don't debate the legislation anymore because it's here. But you know, we're interested in doing what we can to you know make sure proper safeguards are in place and that it's not misused, you know, and it's an individual choice for everybody but I want to feel that people are getting the correct information, it's an informed choice. This has been studied numerous times and there's no evidence of a slippery slope. In Oregon, the vast majority of people who access assisted death are able-bodied, white, highly educated and pretty wealthy. So this idea that the poor, the disabled, non-white people will be pushed into an assisted death against their will, there's just absolutely no evidence of that. I understand that they're trying to be courteous and respectful of the different voices that they're hearing but this isn't about that. This isn't about politics, this is about the individual lives of individual people who should absolutely have the right to make their own decisions while they are able and it is not it's not ethical. Simple, it's not ethical and in my opinion it's also not constitutional to have a law that restricts that.

So if somebody is desperate and wants to go, why not let them go? Who is the government?

Is the government God? I already made my covenant with God.

I really think that we'll be able to look back and realize that some of this discussion is very good for us as a society. It's got us talking about death, which is great, because before, it was the unmentionable, right.  
So we are talking with our families about what our wishes are, what kind of interventions we would want at the end of life and so I think 10 to 15 years from now we will see, like they do in Belgium and the Netherlands and Oregon and Washington that we can have safeguards in place that protect the vulnerable but still allow the option of an assisted death for those who qualify. I would love to see my grandchild get married

and if I don't, I want my grandchild to grow up and be happy and not have to sadly watch her Grammy become unrecognizable.

If you say "Okay, you can go" give me the drink, I'll drink it. That's what I like about Switzerland because they have a drug.

Of course, it has to be prescribed by the doctor. Pentobarbital, 15 grams and a glass of water. You drink it, you fall asleep and you don't wake up. Wonderful.

That's the way I want to go, fall asleep and don't wake up.

I pray every night but

for whatever purpose I have to be here and suffer, I don't know.

For the Ryerson Documentary Unit, I'm Justin Bellmore.