Editor’s Note: Deborah Ziegler received her MA in science education in California, where she currently lives with her husband Gary, and two cavapoos named Bogie and Bacall. She started a woman-owned engineering company after retiring from her teaching career. She says being Brittany Maynard’s mother is her proudest accomplishment in life. Ziegler speaks widely on behalf of end-of-life options in the hope that one day all terminally ill Americans will have the right to aid in dying if they so choose. Her new memoir is “Wild and Precious Life.” The opinions expressed in this commentary are solely those of the author.
Deborah Ziegler's daughter, Brittany Maynard, ended her own life under Oregon Death With Dignity law
Ziegler: America must confront, make available end-of-life medical care and planning
For many Americans, my daughter, Brittany Maynard, was the face of the right-to-die movement. Diagnosed in early 2014 with terminal brain cancer, she chose to move from California to Oregon to take advantage of that state’s Death with Dignity Law. It was there that she ended her life two years ago this November.
The process of moving to Oregon, which required numerous trips in and out of the state, was not easy for Britt, but in some respects she was fortunate. We had the ability, time, and resources to be there with her as her condition worsened; and to help her find and meet a new set of doctors, deal with health insurance issues, and arrange for the medical care she’d need.
We also took on various tasks to help her establish residency, including finding, renting, and furnishing a home where she could end her life when she felt the time was right.
But what happens to people in similar situations who don’t have the financial resources to relocate to one of the few states where right-to-die laws exist? (Currently there are only five.) What happens to those who don’t have family members to provide support the way we did? For them, exercising true autonomy when struggling with terminal illness is virtually impossible.
As passionate as Britt was about being in control of her own destiny as she progressed toward her goal of physician-assisted death, she was equally passionate about it being a choice everyone should have, all across the country. With so few viable options available for those who are terminally ill, she felt that to withhold an option that could reduce suffering isn’t just inhumane, it’s torture.
To what extent is America ready to delve deeply into end-of-life medical care and planning? I believe we’re on the cusp of a huge paradigm shift.
In addition to aging baby boomers who are starting to be aware of what the end might look like, there’s a younger generation of people like Brittany saying, “No, you can’t tell me what to do with my body. I want to know what all my options are.” They’re ready to start talking about how we’re going to live and how we’re going to die. You can’t truly talk about one without the other, because when you determine how you’re going to die, you’re also determining how you’re going to live the rest of your life.
Brittany believed death is everyone’s own private destination for which they need to plan. For some people facing terminal illness, the ideal plan is to pretend they aren’t sick and continue with life as normally as possible. For others the plan is trying every possible medication until the very end, with no expense spared. Still others opt to go into hospice care to mitigate pain. There is no wrong choice. The only wrong is being denied the ability to make your own choice.
Because there was no law in California supporting death with dignity when Brittany’s cancer was diagnosed, what she encountered from healthcare professionals was a culture of “No!” Simply wanting to discuss moving to Oregon and ending her own life resulted in a steady stream of negativity.
She was left feeling she needed to stay strong and in control every second or she’d lose the power to determine her own fate. It built around her a huge layer of distrust. If she hadn’t been so afraid that somehow someone could take away her right to die, we probably would’ve had help as a family – perhaps hospice care with some sort of nurse visitation program to help manage pain.
As it was, Britt was fearful to let anyone in. None of us had any medical training so, as a family, we then struggled to deal with her mounting symptoms and wild swings in behavior.
Moving to Oregon meant moving from a healthcare system that said “No you can’t do this, we’re not even going to talk about it” to one where all options were discussed openly and equally. There was no predisposition as to which way Britt should handle things. But sadly the distrust she felt remained and put her in a defensive crouch that stayed with her to the very end.
When I talk to people struggling with terminal illness who are in the Oregon system and eventually plan to use the law to die with dignity, they describe a different experience. They don’t feel threatened or afraid. For 20 years, that state has been utilizing the law and it has been working well.
All the things the naysayers said would happen – the various slippery slopes – failed to materialize. There’s a very calm, matter-of-fact way of presenting and practicing medicine there that’s different. You can feel it. In fact, the quality of all end-of-life care has improved. I’ve no doubt it’s the same in other states that have passed death-with-dignity laws. Brittany believed it should be the same all over the country. And so do I.
The right to die with dignity is a tough subject, but if we don’t open our eyes and talk about it, we’re going to remain in a society where we die in hospitals hooked up to machines, unable to exercise our own opinion about the way we want our lives to end.