BUFFALO, N.Y. (WIVB)- Death isn’t a topic most people like talking about, but for those facing it, it’s an important conversation.
“You start thinking about well, what do you want your funeral to look like, who might have to raise my son if I’m not going to be around?”
Susan Rahn didn’t think she’d have to face those questions for decades.
Three years ago that changed, when she was diagnosed with stage four metastatic breast cancer.
“Nine months prior to that I had a clear mammogram, so this was completely out of left field,” Rahn told News 4.
“I had to immediately start figuring out that we had to get a will in place, and healthcare proxys, and DNRs, and all of those types of things that you don’t even think about.”CLICK HERE: Inside New York’s End-of-Life Options Act
Rahn is prepared to fight until the very end; she wears a reminder of her strength on her wrist, a tattoo that reads “brave girls are enough.”
But she’s been given the facts by doctors, and wants a say.
The 46-year-old is a strong advocate for New York’s End-of-Life Options Act, which would allow terminally patients like her a choice in their death.
It would authorize the prescription of aid-in-dying medication to individuals with incurable, irreversible illnesses that have been medically confirmed to lead to death within six months.
Brittany Maynard, the bright-eyed, beautiful newlywed from California, brought the “Death with Dignity” fight to the forefront in 2014.
She was diagnosed with an aggressive brain tumor and eventually, given six months to live.
News 4 spoke with her husband, Dan Diaz.
He said Brittany wanted to spend her last months living; at the time California didn’t have a Death with Dignity law.
“We packed up into a U-Haul, we drove up to Portland, Oregon. Brittany had to find a house for us to rent, a new medical team, say goodbye to our friends and family,” he said.
Oregon was the closest state with an Aid-in-Dying option. Brittany’s story struck a nerve around the country, and right here in New York.
“We started to think about happens to those people in New York who have the same problem?” said Sen. Diane Savino.
Savino sponsored the End-of-Life Options Act, which is modeled after Oregon’s legislation.
“If you are terminally ill in New York State and you’ve exhausted all of your treatment options and you have come to accept the reality of your ending, you have really very little choice other than to wait around and suffer,” Savino told News 4.
She’s hopeful the bill will move through a committee by this session, and be in place within the next two years.
Diaz told News 4 the impact from his wife’s story was overwhelming.
“We had no idea that this would be… the amount of attention it would stir. Because from Brittany’s side all she was doing was sharing her story in the hopes that it would make an effect, make an impact on legislators,” he said.
“When she spoke out, and shared her story with the world, I think it really changed the face of the Aid-in-Dying movement,” said Compassion and Choices New York Campaign Director, Corinne Carey.
Compassion and Choices is a national organization that works to expand end-of-life options
Brittany partnered with Compassion and Choices in 2014. Rahn is now heavily involved with the organization in New York.
“It happened while I was going through my diagnosis, and going through treatments. So if it had not been for Brittany and her story, and coming out with it, you know, it wouldn’t have been out there for me to really learn about and be able to be vocal about it,” Rahn said.
“I think that we’ve seen over the past maybe five years, people become much more thoughtful about the death process,” Carey told News 4.
Only five states currently have Death with Dignity laws; the one in California was passed after Brittany’s death, due to her and her husband’s efforts.
Almost 20 states, including New York, are considering Death with Dignity measures.
Most data shows support for the idea of Death with Dignity legislation is high, around 70 percent.
“Eventually my treatment options and whatever clinical trials might be available to me, are going to end at some point,” Rahn said.
“My cancer will at some point take over all the vital organs; my brain, my liver, my lungs.”
She spends her days living, fighting, and speaking out; in hopes of gaining more support for the Death with Dignity bill, which she hopes she’ll get to benefit from.
“I don’t want to be in a bed where I can’t communicate with my husband or my son, where they’re the ones that are talking to me and I can’t respond. It would be heartbreaking to me,” he said.
“I don’t want to leave that memory for them. When they think about me I want them to think about the good times, the trips we’ve been on.”