Right to die

I know how my Grandmother is going to die,” I boasted in Kindergarten. 

“No you don’t!” a freckle-faced boy shot back.

“Yes I do! She’s going to jump out of an airplane naked without a parachute!” 

As a kid, I failed to realize the weight of this idea—or the brilliant humor—but I understood even then that my grandmother, Elizabeth “Libby” Long, had no plans of growing feeble-minded and unable to care for herself. Stubborn and independent, she refused to die a shell of herself, hooked up to machines in a hospital, or without the ability to make her own decisions. 

During the summer of 2013, my grandmother began experiencing relentless throbbing on her right side. It continued through the holidays as she struggled to complete even the most basic tasks. She talked to her doctor about the pain and shortness of breath, asked for second opinions, tried anti-inflammatory medications and had her gallbladder removed. Unable to find anything wrong with her, her primary care physician began suspecting she was a drug-seeking patient. 

“They’re just not hearing me,” Libby told me. “They are treating me like I’m a scam artist. I don’t think they are taking me seriously.” 

It was hard to watch her growing frustration and the noticeable drop in her energy. But I didn’t realize the intensity of her pain until she mentioned she’d been planning to kill herself. She recounted one evening before Christmas, sitting on her bed with my grandfather’s gun. It was then that I realized how dangerous her pain had become. 

Fast-forward a few weeks; my grandmother calls with a very specific request—an immediate red flag. 

“Small child, I had some tests run. I’m expecting to get the results soon, but they’ve discovered a mass on my right side—inside my rib cage. They don’t know yet if it’s malignant, but the doctors think it is. I need you girls to come home so we can talk about this. We need to talk about my plan.”  

When my sister and I arrived, Libby didn’t want to talk about treatment. She wasn’t sure what would happen but said that when the time was right, she’d like to take her own life. She was upbeat about it, relieved that her doctor finally understood her pain. She decided she’d take a few extra pills and go peacefully. But we had no idea what medication she should take to avoid enduring more pain. My sister and I began frantically researching prescription pill toxicity with little confidence and even more questions.

A few weeks later, the test results came back. Stage IV lung cancer had eaten through two of Libby’s ribs, causing the intense pain and the shortness of breath. With his back turned to her, her doctor at a local cancer treatment center told her she had less than six months to live.

Around this time, I drove to see her. She was tired, frustrated and beyond seeking curative medicine. Having endured constant pain for more than six months, she was uninterested in experimenting with the side effects of aggressive treatments. The next day, we went to her primary care physician to get a hospice referral. Returning to her home, I was flooded with memories. Libby teaching us girls to make biscuits from scratch, the three of us planting flowers in the garden, catching frogs, listening to the birds, popping popcorn and snuggling on the couch, my sister and I moving into this house when our parents divorced and again after our mother died. But now, this would be where our grandmother, our best friend, would take her last breath.

That evening, hospice arrived and talked us through the basics. It seemed that almost immediately, she began actively dying. For the next week, we hovered around her as she writhed in pain. My sister and I would sit next to her, giving her medication and sips of water and petting her soft skin. When we would lean over to kiss her, she would whisper, “Kill me, please.” Hospice had provided pain management medication, but it barely seemed to help. That’s the part of the plan we’d never discussed—that our family, swallowed by grief and fear, would become helpless and unable to carry out her wish, and that she would be too weak to do it herself. 

We would whisper back, “We are making a plan, we are trying, we love you.” But our planning amounted to my sister and I staying up late to sneak pills while my grandfather slept, trying to figure out if we could do it. Our grandfather, scared to lose his wife, became convinced she was not ready to go and was cautious about administering medication. But, seeing her lying there in a diaper and hospital gown instead of her favorite silk pajamas, I knew we had failed her. So, my sister and I would sit with these pills in our hands and cry—so much that we weren’t sure if we would ever be ok again. Somewhere inside, we knew it was an impossible task. Maybe if we’d had support. But there were so many questions and no answers.

My Libby died 10 days after we set up hospice. My sister and I were not there when she took her last breath. 

A year later, I’m still working through the guilt of those last days. But I’ve learned of so many stories similar to ours, and I’ve shifted my focus to the reasons our most beloved human was denied the respect she asked for at the end of her life. 

Our country has a long and complicated history with the Right to Die movement. The conversation jumps between terms of morality, euthanasia, physician-assisted suicide and names like Jack Kevorkian. Dr. Kevorkian was an American pathologist who claimed to have assisted more than 130 patients in their suicides. He became a household name in 1999 when he was arrested and tried in court after administering a lethal injection to a patient. Kevorkian served eight years of a 10-25 year sentence. He’s often referred to as “Dr. Death” but is highly regarded as one of the most prominent champions of the right-to-die movement. A supporter of his work, my grandmother wrote letters and made phone calls to anyone who would listen during his trial. Oregon was the first state to implement a Death with Dignity law in 1997, followed by Washington (2008), Montana (2009), Vermont (2013) and New Mexico (2014). Each state law has its own unique requirements and boundaries. But they all allow terminally ill, mentally competent patients age 18 and older, who are diagnosed with six months or less to live, an opportunity to hasten an inevitable death. The Right to Die movement is about compassionate end-of-life care that helps people have the best death possible based on their own beliefs, preferences and needs. The movement seeks to prevent the all-too-common occurrence of medical centers failing to honor patient DNRs and inflicting aggressive, invasive and often expensive treatments.

Before Libby got sick, I remember hearing the story of Brittany Maynard, a young woman with terminal brain cancer who made national headlines when she and her family moved to Oregon so she could die on her own terms. The idea of a right to die is controversial. Many feel it goes against their religious beliefs or demeans the value of human life, that there’s too much room for error, that it violates the Hippocratic Oath or that vulnerable patients (those living in poverty) will be pushed into this decision instead of receiving treatment. Because Maynard was so young and outspoken (and happened to be a beautiful newlywed), she made Death with Dignity an energized national conversation. 

Twenty-five states plus the District of Columbia will consider Death with Dignity laws in the 2015 legislative session. This included Oklahoma’s HB 1673, the Oklahoma Death with Dignity Act, which was passed on to the Committee of Public Health but never made it to the House floor. There’s still a chance the bill could be picked up in the next legislative session; it depends on who makes up the committee next year and how they handle the bill. To influence the fate of the Oklahoma Death with Dignity Act, contact the representative in your area. Start the conversation, share your story and put your tax dollars to work. I shared my story because of my undying love for my grandmother—not because it’s unique, but because it’s human. 

To learn more about the Right to Die movement, visit deathwithdignity.org or compassionandchoices.org. 

No matter where you stand on the issue, watch “How to Die in Oregon,” winner of the 2011 Sundance Film Festival U.S. Documentary Grand Jury Award.

To learn more about getting involved in state politics and legislation, visit okpolicy.org, togetherok.org or votesmart.org.

For more from DeJon, read her story on the criminalization of homelessness in Tulsa.