In a culture that can be sold just about anything if it includes the picture of a beautiful young woman, it is no surprise that it took the death of beautiful, young, intelligent Brittany Maynard to get Americans to really talk about aid in dying.
Diagnosed at 29 with terminal brain cancer, this young woman and her family spent the final months of her life advocating for aid in dying (or, as its opponents call it, “physician-assisted suicide”). Her reasons, including quality of life, were compelling. She ended her life on Nov. 1, 2014.
This version of our national conversation is quite different from the one that began nearly 20 years ago when Jack Kevorkian allowed “60 Minutes” to air a videotape of how he helped a 52-year-old with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, kill himself. Kevorkian was convicted of second-degree murder and imprisoned for eight years.
I witnessed the suffering and pain my grandmother endured as a hospice patient. As is required of Medicare beneficiaries who enroll in hospice, she had a terminal diagnosis with a prognosis of less than six months to live, she had to forgo curative treatment and she could receive only “comfort care.”
As with many families, mine thought hospice would ensure that she would not die in pain in a hospital, tethered to life- support machines. But, in the final days of her life, she and my family asked hospice to boost her pain medicines. Hospice nurses refused, saying that they did not want to hasten her death or cause her to become addicted. Instead, her intractable pain landed her in the hospital, where she died in November 1994.
In 2010, a friend’s mother died in a home-based hospice, which responded to her husband’s repeated requests over a weekend for a nurse by ordering a hospital bed.
Last year, a friend died while in a home-based hospice program. One Friday afternoon, a hospice nurse, irritated by having to stay late to set up a urinary catheter, suggested that it could just wait till Monday.
I am not banking on hospice or its cousin, palliative care, to prevent suffering at the end of my life or the lives of my loved ones. Instead, I want to rely on death-with-dignity laws that allow people with terminal illnesses to receive legal prescriptions for lethal medications.
Because I am an American, I guess, I want to control what I can about my own life, including how it ends.
The reality is that, as with many of my fellow boomers, I am most likely to end up with cancer or heart disease or dementia. At best, I’ll live a few months after diagnosis. At worst, I’ll stick around for years, increasingly unable to care for myself. Whatever the future holds, I want the option that legal aid in dying guarantees: to die on my own terms.
I first testified about this issue in the late 1990s, as a way to cope with my distress at my grandmother’s death. I wrote for many years for various groups devoted to bettering end-of-life care, and I’ve written books that described for other families what to expect at the end and how to help.
Having been at this for 22 years now, I am weary of the old arguments: the slippery slope, euthanasia, etc. In states where such measures have been enacted (most recently, California), the laws include strict measures to ensure that the patients in question are, in fact, dying of a terminal illness, that they are not “just” depressed and suicidal, and that they are not being coerced. In Oregon, the first state to legalize aid in dying, many more people request the prescription than take the lethal dose. For some, it appears, having the option gives them comfort and the ability to endure.
Maryland will reintroduce its version of the law in 2016. Known as the Richard E. Israel and Roger “Pip” Moyer Death With Dignity Act, it was introduced this year and was in committee for much of the fall.
Now that Maynard has given people a real glimpse of what it means to die of brain cancer — with seizures, utter dependence and worse — will we dare to allow people in Maryland the right to die? Or will we continue, as the hospice nurse told my family, to believe that there is something noble and holy about suffering, that, as the nurse said, “This must be God’s will for her.” Not her God, not my God.
Let us talk instead about the will of the people.