Support seems to be growing in the US for assisted suicide as a way for terminally ill patients to retain some control over their deaths, as well as spare them and their loved ones undue pain.
Earlier this month, California became the fifth state to allow what advocates for death with dignity call “physician-assisted dying”. Groups in Colorado are currently working to push through a bill that would make available similar rights to its residents.
We talked to one advocate for assisted dying legislation in Colorado, Patti James, who has a personal connection to the subject. An 80-year-old retired psychiatric nurse from Evanston, Illinois, James has incurable lung cancer. While she would exercise the option to die on her own terms should the pain become unbearable, it is her father’s death in a nursing home that prompted her to fight for assisted dying legislation.
Your father ended up in the hospital after a heart attack. What was his care like?
His physician told me he would probably not live much more than a month or two. We were told he needed to be in a nursing home, so that’s what we did.
He was always afraid of having a difficult death. I am not sure why, but he was an anxious man, and he was an introvert. I think he really feared not being in control of everything.
So when I became a nurse he begged me to promise that if I knew he was going to have a difficult death or was in pain that I would do something for him. And I was very clear with him that that was not going to be a possibility because it was outside the law. But I would help in any way that I could.
His nursing home experience lasted not two months, but two years. And each day it seemed to get worse and his care got worse. I just wore out, and I think that happens to people.
He became more and more agitated closer to the time of his death. So much so that they could not contain him in the bed; they could not contain him in a wheelchair. They worried for his safety and so they – I don’t know whether they built it or they actually had it – but it was like a big playpen, and they placed him in that and that’s where he died. It was horrible.
What is it like to live with that?
I think that is what I want people to understand: that a long, difficult death like that [is] not only is horrible for your loved one, but it is horrible for the family.
I do want you to know my father’s name: it’s William Pollack. I think I am motivated to do what I am doing right now in response to all the feelings I have about what I wish I would have or could have done. If by doing this kind of work I can save somebody from that kind of death – and their family from having my experience – then I need to continue to speak. He is my motivation, really.
I saw him before he died, and I knew he was going to die. My regret is that, after over two years of pain, I just couldn’t bear it. I wasn’t able to stay there and stick it out.
What was your own diagnosis like?
I was diagnosed with stage three lung cancer in 2006, and my prognosis was 18 months to two years to live. So I planned for that and got everything in order and my family was prepared and, I just decided not to die. I just had too much to do and I had great faith in God and a wonderful church. Unbelievable friends and unbelievably supportive family. I had [a] very aggressive treatment: I had surgery to remove a lobe, and I had chemo and then I had radiation therapy that almost killed me.
I had to be back in the hospital for several weeks, but during that period of time I was able to continue working as a nurse. I was bald as a billiard ball and I hated the wigs so I would just go into work with my bare head.
I chose to keep fighting to live. Advocating for assisted dying in Colorado is about creating that choice for others: not a have to, not a must do. It simply allows a choice for a gentler, kinder, easier, less painful death.
How important is it to have control over death?
When someone is diagnosed with a terminal illness, with only six months to live, they are not suicidal. They want to live.
When I was diagnosed with a terminal illness, I was not suicidal. I wanted to live and fortunately I did. But there will be a time when I will be faced with a death from lung cancer. Being a nurse, I know it is not pretty.
I want to have a choice. And I am not suicidal now; I will never be suicidal. I simply want a choice for an easier death for myself and for other people who might wish that.
Why do we feel such a taboo around death?
For most people, death is a pretty scary thing. There are certain religions and cultures that have more of a taboo about death and about an afterlife or no afterlife. It’s really ingrained from childhood to adulthood. And for most people, an unknown is scary. We haven’t been taught that an unknown could maybe be OK. Or would be welcomed.
I think when people are in a dying process, so much of our old belief system can either hold us up or be very scary. For my father, they were very scary.
If things did progress and you had that option, is that something you think you would exercise? Or is it more about having the option?
What I have learned from working for this cause is that many people in Oregon – where a death with dignity act was signed into law in 1997 – have requested the medication, have been given the medication and don’t take it. Because just knowing that it is there, under their control in their home has eased the fear and the anxiety. They were able to continue the death process without using it. I think that’s incredible: that tells us so much about the emotional component of the process of dying.
Personally, I would want to know that I had the option. And whether or not I would use it would depend on how much pain I was in. If I reach that point of, I just can’t do this anymore, I would take it. And be grateful I had it.
This interview has been edited for concision and clarity.
