A Bitter End, part 6: The legal land mine, undefused

In print, this story was split across more than one issue because of its length. Online, we've split it into six chapters: 

1. The very old man who wanted to die
2. The hospice
3. The overdose
4. The pro-life coroner
5. The strange prosecution of Barbara Mancini
6. The legal land mine, undefused

Or you can read the story as a single page. 

Part 6: The legal land mine

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Pennsylvania State Sen. Daylin Leach (D-Montgomery Co.) has been trying to amend the law for years; since 2008, he’s introduced the Death With Dignity Act three times. His interest in the subject, he says, started when he had to watch his brother-in-law Taylor die a painful death from lymphoma at 42. From Leach’s Senate memo introducing the act:

If any pet owner in America had forced a dog or cat to endure what Taylor had to endure, he would have been charged with animal cruelty. Yet human beings are, under current law in Pennsylvania, condemned to suffer unspeakable agony with no legal recourse. I believe this has to change.

But change has been slow in coming. “What happened is what happens with almost all legislation in the [state] Senate, which is that it’s introduced, and then it lies in quiet repose in the committee until the end of session, at which point it dies and has to be reintroduced. We don’t pass much of anything, really, and we move even less that’s controversial.” Leach laughs ruefully. “It’s not like there’s some big-money lobby behind it. So we just have to rely on, at some point, someone who’s in a position to move [the bill] having a situation in their own life, or a situation that they’ve heard about, that makes them decide this is important to discuss.”

Leach says that that the loss of his brother-in-law and a couple other family members really invested him in this issue. Often, it takes a loved one’s terminal illness for these issues to seem real. “It makes you think about what you’d want if you were in that position — what would you want your options to be? Who would you want to make the decisions? And I think almost nobody wants the government to make those decisions.

The first state to pass aid-in-dying legislation was Oregon; its 1996 Death With Dignity Act “allows terminally-ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.” Since then, Washington, Vermont and New Mexico have passed similar legislation. (Aid in dying is also legal in Montana, via a 2009 Supreme Court ruling on a C&C-spearheaded appeal.) The New Jersey state assembly will vote on another measure in the next month or two, though Gov. Chris Christie has said he would veto it if passed.

Leach’s act “was based on the Oregon one, which has survived Supreme Court scrutiny and is clearly Constitutional,” he says. In it, a terminally ill patient could access medicine that would end his life painlessly without needing to lie about their intentions or potentially put his family at legal risk. There would be many hoops to jump through first, obviously: “Two separate doctors — one can be a treating physician, and one would have to be an independent doctor — would have to sign a report saying that the patient has less than six months to live” before that patient would be eligible to ask for the prescription.

“It’s important to know what happens in reality with this,” adds Leach. In Europe and states where aid in dying is legal, “most people who get this medication don’t immediately run out and take it.” Oregon’s act requires the state to “collect information about the patients and physicians who participate in the Act, and publish an annual statistical report,” so the data from there is particularly thorough. Compared to the 122 lethal prescriptions written in Oregon in 2013, only 71 were used.

“When things get really bad, just knowing they have options gives people the strength to hang in there,” says Leach. “Many people who go through the trouble of getting the medication never take it. Others who do take it — in most cases, they get it six months out, four months out, but they don’t take it until the last couple of days” of their lives.

The average person in Oregon who gets one of the prescriptions is white, better-educated than average and dying of cancer, with a median age of 71. A tiny number said they were taking this course because of the potential cost of treatment; nearly all cited the same things Joseph Yourshaw talked about: Loss of autonomy, loss of dignity, being unable to do the things that give life meaning.

“And there would be strict penalties,” Leach adds. “There’s concern that people will be pressuring somebody to end their life early so they can get the money in the will quicker. There’s no evidence that that’s happened, ever. But if it did, it would be a crime with severe penalties.”

Leach says opponents of aid in dying often bring up such what-if hypotheticals that rarely happen in practice, but the root of their opposition is deeper. “There’s what people say in terms of why they oppose it — things like ‘Oh, there’ll be pressure,’ or ‘there’s always miracles’ or whatever. But I have found in detailed discussions with people that those are not the real reasons they’re opposed to it. Most people, the real reason they’re opposed to it, at the end of the day, is religion.”

Believing that ending one’s own life is a sin no matter what the circumstances is fine, says Leach. “But I don’t know why anyone has the right to use the power of the state to force their religious views on other people. If your god doesn’t want you to end your life early when you have a terminal disease, then… don’t! This law wouldn’t require anyone to do anything. But don’t tell someone else who has different religious beliefs that they can’t live their lives according to their own beliefs.”

The Death With Dignity Act would clear up the language in the statute Mancini was charged under, says Leach. Leaving it as vague as it is, says Leach, means a standing risk that what happened to her will happen to someone else. “The charges against her were dropped, but she had to go through an awful lot. And we don’t want family members who are trying to help their loved ones being subjected to the sort of things Mancini was subjected to.”

Leach says he’ll keep introducing the act until it moves. “It’s a basic human right, and eventually we will prevail. It’s just a shame that a lot of families have to go through needless suffering in the meantime,” he says.

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Mancini returned to her job in the ER of Lankanau Hospital on April 28, after nine months of unpaid leave. She eased back into it with shorter hours, but is now back to working regular shifts. “It’s gone really well, better than I’d expected,” she says. “I just didn’t know if I’d be able to handle doing it. And when I went back, it was almost as if I’d never left.

She was offered her job back almost immediately after her charges were dismissed. “But I wasn’t ready to return right away. I stayed out another two months because…” she pauses. “Honestly, I went to counseling, ’cause I felt I needed some help before I went back. Working in an ER is a fairly high-stress environment, and I didn’t want to risk messing up.”

“Being away for nine months, I thought I’d have forgotten how to start an IV — turns out I didn’t have any problem with that. I had my insecurities just because of what I’d been through, but it ended up being just fine,” she says. “Everybody’s been very supportive and understanding, and horrified by what happened.”

“There is not a day that goes by that I don’t think about this. And sometimes I spend a lot of time — it intrudes on my life, all the time,” she says.

“I’m trying to move on with my life. But the way my dad died —“ she pauses. “I can’t imagine that I’ll ever get over that. Maybe it’s possible someday, but it seems unimaginable to me right now.” ◈