ROCHESTER, N.Y. (WIVB)- We first met Susan Rahn in the spring of 2016. The Rochester wife and mother spoke candidly about a topic many people find hard to discuss; death.
“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?” she told us last May.
Dying is something Rahn can’t stop thinking about; largely because she knows she’ll face it sooner than she’d like.
In 2013, she was diagnosed with stage 4 metastic breast cancer.MORE | Death with Dignity
“Death is a part of life. You can’t escape it,” she said at her home in Rochester in late February.
Legislation in Albany would allow you to control it, if you’re terminally ill.
The Medical Aid in Dying Act is again up for approval from New York lawmakers. Rahn is hoping it passes before it’s too late.
“I want this control. I want to be able to make this decision for myself, because so many other decisions have been taken from me.”
She’s one of the measure’s biggest advocates. In August, she passed her 36-month median life span after diagnosis.
“In my mind I’m waiting for the other shoe to drop, just like everybody else who is in my situation does, living from scan to scan.”
Her last scan, which she did in November, showed something unknown in her lungs. She’ll know more in May, when she has another one.
Rahn said one thing is clear; this diagnosis will kill her.
She wants to have a say in her final days, so she’s started speaking out in support of this legislation. She’s also started writing a blog about her experiences.
“It just kind of morphed into this kind of role.”
The Medical Aid in Dying Act is sponsored by Assemblymember Amy Paulin and Senator Diane Savino, both Democrats.
The measure didn’t quite make it to the finish line last session. The bill would allow terminally ill adult patients in New York state to obtain medicine from a physician to end their own lives.
Six states currently have “death with dignity” laws and many more proposals are out there. But the idea of choosing the time and place of one’s death isn’t without opposition.
“Proponents of this legislation call it “dying with dignity,” but the Catholic Church hardly considers it dignified to go against God’s plan and choose the time and method of one’s death,” Bishop Richard J. Malone of the Buffalo Catholic Diocese said via YouTube.
The bill narrowly made it past the Health Committee last session with a final vote of 14 to 11. The lawmakers from western New York all voted against it.MORE | Medical Aid in Dying moves forward in Assembly
Rahn has spoken in Albany before both Senators and Assemblymembers, in hopes her story will change minds.
She who grew up Catholic, but feels because this choice is a personal one, it shouldn’t offend those who don’t choose it for themselves.
“I’m not trying to convince them or change their beliefs in any way.”
Bishop Malone told News 4 he’s concerned the measure would create a slippery slope for vulnerable patients. His opposition, he told us, comes from both a religious and a practical stance.
Like most aid in dying bills, New York’s is modeled after Oregon’s Death with Dignity Act.
“We’ve had a fantastic model in this country for nearly two decades in Oregon’s Death with Dignity Law,” said the New York Campaign Director for Compassion and Choices, Corinne Carey.
Compassion and Choices is a national non-profit that advocates for end-of-life options. Carey feels the safeguards in place under Oregon’s law has proved to be effective.
“We believe that because there have been no cases of abuse or misuse in Oregon, that using these same safeguards is the right recipe for New York,” she told News 4.
“That’s why every state that considers this legislation looks back to Oregon’s law as a model. and that’s what we did here in New Y
New York’s bill would require:
- Both oral and written request from the patient wanting the drug.
- Patients must ask for the medicine, the doctor cannot suggest it.
- Two adult witnesses are required when the patient makes their request.
- The patient can change their mind at any time.
- The heath commissioner would be required to keep track of how often the medicine is requested, and used.
- No doctor would be required to participate.
- The patient must also have the capacity to make the request, meaning they have to be of sound mind and know what it is they’re asking.
Rahn makes the distinction between medical aid in dying and suicide. For her, the two are very different.
“It’s not suicide because I’m not suicidal,” she said.
“I want to live, more than anything else. I am doing everything I can to stay alive. I will do whatever I have to do to stay alive. I will do the chemos, the treatments, the clinical trials if they’re available for me, I’ll do them all. Dying is not what I want to do. I don’t want this diagnosis.”
Oregon has kept records of it’s program since it started in 1997. Most recent numbers show 133 people died in 2016 from ingesting the lethal drugs. 19 of those individuals received their prescription in prior years.
Less than 1 percent of the state’s annual deaths involved a lethal prescription.
There have been documented cases of patients regurgitating the medicine, or regaining consciousness after taking it, but those numbers are relatively small.
Most patients who chose to utilize the Death with Dignity Act cited their fear of losing autonomy and dignity in their final days.
It’s the reason Rahn wants the option as well.
We asked her what she’d like her last day to be like.
“I would like it to be more of a celebration. I have been to so many funerals. And I don’t want that type of atmosphere,” she said.
The financial implications of medical aid in dying will likely be discussed in Albany.
- The lethal drugs required for medical aid in dying are expensive, sometimes several thousand dollars.
- States like Oregon and California have agreed to cover the cost of the drugs for Medicaid patients, but many states do not.
- Most of the patients in Oregon who ingested the lethal drugs last year were on some form of governmental health insurance, according to the Oregon Health Authority.
- Congress prohibits the use of federal money for aid in dying, meaning the VA and Medicare couldn’t cover it.
MORE | Click here to latest data on the Death With Dignity Act from Oregon