Tuesday afternoon the state Senate Judiciary Committee takes up SB 128, which would legalize physician-assisted suicide in California. As part of KPCC's ongoing coverage of this issue, Impatient is featuring people's stories about how they or a loved one dealt with an end-of-life situation.
Last week, I shared the story of Teressa Syta, who was glad her mother didn't have the option of ending her life when she was diagnosed with terminal pancreatic cancer. This week, I bring you the perspective of another daughter: Amber Phillips of Pasadena wishes she'd conceded sooner to her mother's requests to stop treatment for breast cancer.
Amber Phillips says her mother, Connie Phillips, battled breast cancer for 20 years. She shared her story through the Public Insight Network; I followed up with a phone call.
"She was a fighter," Phillips writes, explaining that her mom "did radiation, hormone therapy and chemotherapy, had her lymph nodes removed, had a breast removed, meditated, and all numbers of treatments."
In 2008, doctors said the cancer had spread from Connie's breasts to her bones and lungs, continues Phillips. They estimated Connie would live no more than five years.
"We nagged her, encouraged her to continue treatment when she didn't want to, bought her wigs when she started losing her hair, managed her diet with cancer-friendly foods, held her hand, and begged her to continue fighting for us," writes Phillips.
'We wanted her to live'
By late 2011, Connie's health was deteriorating. She stopped working as a teacher in Phoenix, and moved to Los Angeles to live with Amber and her husband.
"She was on heavy narcotics so she couldn't drive, she was no longer in her own home, she no longer had her job, she was moved away from her friends and she became dependent on us," Phillips writes. "This was incredibly difficult for her."
That was around the time when Connie started talking about wanting to stop chemotherapy treatment, Phillips says. But she and her husband objected.
"We just wanted her to live and we wanted her to continue fighting," Phillips recalls. "We really just didn't get it. We really bought into the possibility or the fairy tale that things were going to get better, when it was so clear that they were getting worse and worse."
Looking back, Phillips acknowledges she ignored signs of her mother's impending death.
"She lost her voice – something happened to her voice box, and she could only speak in this very high tone," she says. "She was having trouble breathing. We were just hoping she would get better."
In the spring of 2012, Amber Phillips' father died suddenly of a heart attack. (Her parents were divorced.) The loss of her father, she says, only strengthened her resolve that her mom couldn't stop treatment yet.
"I just doubled down," she says. "I just felt like I couldn't lose both of them. I just thought I was going to fall apart.
"It was a lot of 'me' focus – what I could handle."
Finally, in June 2012, Phillips says she had a "come-to-Jesus" moment: She accepted that her mother wanted to end treatment, and called in hospice to her home.
At that point, she says, her mom was losing a lot of weight, couldn't keep food down, and her organs were clearly shutting down. Still, Phillips remembers, she was optimistic that her mom still had time, noting, "we were still going to Target on the weekends, and taking weekend trips together."
At the end of July 2012, Phillips says, her mom started hallucinating.
"After the worst day of my life to that point, I gave my consent to put her back on morphine, knowing that she would die and knowing that this is what she wanted," she writes.
Connie Phillips died at her daughter's home on Aug. 1, 2012. She was 65.
Amber Phillips has had time to reflect on her mom's death.
"It was her decision, not mine," Phillips acknowledges now. "And I regret that I took that decision away from her."
"I don't regret nagging her or telling her that I wanted her to be around because I loved her and was not ready to be without her," she writes. "But I regret standing in the way of a decision that was hers to make because I was selfish."
Phillips says she supported legalizing physician-assisted suicide even before Connie's death. Her experience with her mother, she says, has turned her into a more vocal supporter.
"If I want my mom to continue treatment because I want her around more, that's a struggle we should have within our family," argues Phillips. "I don't think I ever would have felt like that's the government's call."
She acknowledges that some disability rights groups have raised concerns that this type of law would leave people vulnerable to abuse. "I do empathize with that concern," says Phillips, adding that there could be regulations built into the law to prevent these types of problems.
But "in my experience," she says, "I've only seen it play out in such a way that people are not given the choice to end their suffering...There is a way to navigate potential abuses, without robbing people of the choice about their own lives."
More stories and perspectives
Practically everyone who's been touched by death has an opinion on end-of-life care. I'm collecting your stories on this issue (you can still submit yours here) and keeping an eye out for other interesting perspectives.
Here are a couple that you shouldn't miss:
Doctors with cancer push California to allow aid in dying, by Anna Gorman for NPR
Palliative care expert is a vocal opponent of Death With Dignity law, by Eryn Brown for the Los Angeles Times
And if you want to participate in a live discussion on this topic, don't miss this upcoming event in our Crawford Family Forum, hosted by health correspondent Stephanie O'Neill.