Movies and books -- like The Bucket List and Tuesdays with Morrie -- suggest that the terminally-ill will accept their impending demise. But Hollywood misses the mark.
When my aunt came to stay with my family for a few weeks in our house in Oakland, she had only six months to live. At first I was surprised by how serene she seemed despite her prognosis. But soon her distress became more apparent. She cried uncontrollably one night when listening to music and drinking wine outside with my dad on our patio. As Yolanda Adams's rendition of "I Believe I Can Fly" played on our stereo, she sobbed, "I don't want to die."
During her stay, she and I spoke about her terminal cancer. She believed that her doctors didn't know what they were talking about. They said that she was dying, but she knew a woman who lived much longer than the year her doctor had given her. My aunt said that she was going to have a long life too. I wanted to comfort her, even if it meant lying and agreeing that her doctor was a quack. But I didn't want to give her false hope that would prevent her from making the most of her last months.
After a couple weeks, my aunt returned to her apartment in Texas where she lived alone. Even as her health rapidly deteriorated in the months following her visit, she refused to accept her condition. After she passed out a few times in her apartment, my mother placed her into a hospice facility. She only stayed for a short time before she told my mother, "Move me the hell out of here." My mother acquiesced and my aunt's children took her in and cared for her.
But this living situation was brief. By themselves her children couldn't provide my aunt with the care that she needed. She went back to the hospice facility and, within a week, she died. Before my aunt's death, I rarely considered the circumstances under which I might leave this world and what would be important to me if I knew I had little time left. I promised myself that I would not allow myself to die, as she did, in the company and care of people I did not love and in a place that I did not like.
Face of Terminal Illness
I thought of my aunt when the mainstream media became captivated by the story of Brittany Maynard, a 29-year old woman from California with brain cancer. Maynard moved to Oregon so she could have a physician-assisted suicide, as permitted by the state's Death with Dignity Act. Like my aunt, Maynard faced a grim prognosis of fewer than six months to live. But the resemblance between the two women stopped there.
My aunt was a middle-aged woman of color, for whom a terminal illness was only one of life's many hardships. She was one of the first African-American students to integrate an all-white elementary school in Dallas. She raised two children as a young, single mother, at times using drugs and working as a prostitute to make ends meet. Brittany Maynard was a white, well-educated young woman who had recently married. Her story, along with beautiful pictures of her on her wedding day and lounging on a patio chair with a puppy, helped make her a media darling.
Like many others, I couldn't help but feel sympathy for this woman, a victim of a devastating illness that struck her in the prime of life. But my aunt, on the other hand, had life experiences that were more likely to elicit scorn - not sympathy - from others.
Dying isn't a Crime (in California)
Last fall, due to the influence of Maynard, her family, and other Californians who have publicly supported the right-to-die movement, the California state legislature passed the right-to-die law, which permits physician-assisted suicide. The California End of Life Option Act, which takes effect next month, allows doctors to prescribe aid-in-dying drugs - lethal doses of central nervous system depressants - to terminally-ill California residents. To obtain these drugs, the patient verbally requests them and submits a written request to her physician. The writing requires two witnesses, one of whom may not be a relative of the patient nor someone who stands to inherit from the patient's estate. Another physician and a mental health specialist must evaluate the patient. She must not suffer from any underlying, untreated psychiatric condition nor be acting under coercion, and she must be knowledgeable about the suicide process and alternative palliative care options.
Proponents of the California End of Life Option Act are optimistic that it will work smoothly. Oregon's Death with Dignity Act has worked without incident since 1997 when it was enacted, and the California law is very similar to Oregon's. But California's population is nearly 10 times the size of Oregon's, meaning that it could potentially encounter more technical problems than Oregon's law, due to the number of individuals who could opt for physician-assisted suicide. What's more, California's law accounts for the state's greater cultural diversity. For example, unlike Oregon's Death with Dignity act, California's law allows residents who do not speak English to use an interpreter. This portion of the law makes it more inclusive, but linguistic miscommunications could arise.
The typical, yet important, concerns about how the law could affect more vulnerable citizens further complicate the issue. How might the law impact residents of lower socioeconomic status? The pharmaceutical company Valeant Pharmaceuticals has already doubled the price of its aid-in-dying drug, Seconal, since California lawmakers passed the new law. As of this year Seconal is now $3,000 for the one pill that patients must take to die, whereas the cost was less than $200 seven years ago. Also, opponents of physician-assisted suicide worry that the more vulnerable members of society would be unfairly encouraged to request aid-in-dying drugs, which are still generally cheaper than other, less controversial palliative care options. And, on a broader scale, of what use is "death with dignity" for those in our society who don't even experience life with dignity?
Death with Dignity without "Death with Dignity"
Brittany Maynard was privileged. She had the right traits to become a spokesperson for the right-to-die movement. She had resources and a supportive family to allow her to relocate to Oregon and cross experiences off of her bucket list, like travelling to see the Grand Canyon. But an equally, if not more, important privilege that she had was the privilege to die at her home, surrounded by her loved ones. And that privilege of dying with dignity resulted as much from her acceptance of her terminal prognosis as the lethal medication prescribed by her doctor. By coming to grips with her impending demise, she enabled herself to think not only about what mattered most to her during her last few months, but also to make her desires a reality.
Regardless of how the new California law plays out over the coming years, many more terminally-ill people will succumb to their disease than will die by their own hand. African-Americans, in particular, prefer this fate to physician-assisted suicide. And this is fine. But it's unacceptable that many, like my aunt, are not tough-minded enough in the face of imminent death, thereby hindering their ability to die how they would want to die. And getting people to accept their mortality and actively plan for their last few months of life is as crucial as whether they should have a right to physician-assisted suicide.