Patricia A. Nugent: Death with Dignity — Continuing the Conversation

After swallowing the doctor-prescribed lethal pills, she died in her bed, surrounded by family members. We knew she was going to do it; she had been quite open about it. Videos of her explaining her rationale were broadcast on national television. Beautiful 29-year-old Brittany Maynard had become the face and the voice of Compassion & Choices, an advocacy group for the terminally ill.

Her chosen date seems quite fitting to me; November 1 is The Day of the Dead or All Saints’ Day. It’s also my mother’s birthday. And my mother died of the same cruel disease. Only I didn’t know that until I recently checked her death certificate, ten years after she passed.

Not wanting to give that certain killer the dignity of a name, I had refused to learn the diagnostic term for the type of brain tumor my mother had. It didn’t deserve one. Until now.

Glioblastoma, the coroner had written in the little box. Glioblastoma – the most common and most aggressive malignant primary brain tumor found in humans. The radiologist had described it to us as “a lousy diagnosis with a lousy prognosis” even as he talked us into a summer’s worth of radiation treatments. Treatments that turned out to be ineffective and only deepened our desperation,

I would have killed my mother if she had asked me to; I halfheartedly offered a couple of times. Not wanting to endanger me, she declined, her protective maternal instincts still intact.

I was relieved at the time; I had no idea how I would end her so-called life. She was, after all, paralyzed and confined to bed in a long-term care facility. Smother her with a pillow? Sneak in a large volume of some kind of pills? Strangle her? The legal consequences would have been severe in New York State. A local woman had been charged with second-degree manslaughter for helping her terminally-ill and chronically-pained husband commit suicide. Even though it was well-documented that he had repeatedly begged family members to help him end his life, his wife went to prison for a year.

So, despite my mother’s physical and emotional misery – her constant cries of “I just want to die” – she had no choice but to linger. Delivered via hospice care, morphine took away the physical pain at the end. But it couldn’t touch the emotional pain. This heretofore brave woman of faith prayed to God to take her, to be merciful, to let her die.

“This isn’t living,” she’d sob. “This is just existing.”

I wasn’t living either; no one in our family was. We were all just existing day-to-day, watching my mother waste away until she became comatose and eventually died.

Within minutes of her passing, her face took on a peaceful countenance, so unlike the torment I had witnessed for nine long months.

* * *

As young as she was, Brittany Maynard knew she did not want to wait for the inevitable toll the disease would take on her, as graphically and accurately spelled out by Barbara Coombs Lee, President of Compassion & Care: “…her disease will cause unending seizures and headaches and nausea and vomiting and pressure in her brain, and the loss of every bodily function, including thinking and moving.”

That sounds all too familiar. If the disease had a slogan it would be Glioblastoma: It’s not living; it’s just existing.

Following Ms. Maynard’s terminal diagnosis on New Year’s Day accompanied by a six-month prognosis, she and her recently-wed husband moved to Oregon because of that state’s Death with Dignity legislation. Since there was no hope for her (there rarely is with that type of brain cancer), she legally secured what she needed to take matters into her own hands. She then waited for the time when the bad days outnumbered the good. The seizures had already started.

Ms. Maynard wrote that she was doing this to gain “control of a terrifying terminal disease through the application of my own humane logic.” She told us that she would decide when to take her leave based on how she was feeling and the impact of her suffering on her loved ones. (It’s well documented that family caregivers are at risk for significant health problems leading to an earlier death, a consequence of long-term stress and lack of self-care.)

Total strangers contacted her to beg her not to kill herself; others to congratulate her for using her disease as a bully pulpit to advance the Right-to-Die cause. Still others offered advice as to when and where to end it all. But she knew it was up to her; she had been given the gift of controlling her final destiny.

* * *

Too soon after my mother died, my 11-year-old golden retriever was diagnosed with terminal cancer. We did what we could for him, sparing no expense. When the vet told us, “It’s time,” we responded, “We’re not ready yet.” His reply came swiftly: “I love people who don’t give up. But the problem with people who don’t give up is that they don’t know when to give up. He’s suffering; it’s time to let him go.”

So we euthanized our beloved pet, holding him tightly as we relieved him of his pain.

Ten years later, I am haunted by this paradox: I was able to “humanely” end my dog’s life when it became apparent that there was no hope, but was unable to spare my mother her intense suffering. The all-too-apparent truth is that we don’t force terminally-ill pets to keep living until they die on their own, but we insist that humans endure a prolonged, painful process.

Flashbacks of my mother’s pain and desperation, confirming that life at any cost is not life, are seared into my brain. Friends ask me – but I refuse to research – whether glioblastomas are hereditary; I still deny the disease any standing. I do know without a doubt what I would do – and currently Vermont would be my closest refuge. We must continue the discussion about our right to die with dignity if issued a terminal diagnosis – for my mother, for Ms. Maynard, and for all of us who may someday find ourselves begging for mercy at life’s end.

— Patricia A. Nugent writing for Vox Populi