New York Times Op-Ed Featuring Compassion & Choices CEO Outlines Realities of Aid in Dying

Jan 5, 2024

The New York Times recently published a sobering yet beautiful guest essay about a New Jersey woman’s choice to end her increasing suffering from terminal cancer using the state’s medical aid-in-dying law, I Promised My Sister I Would Write About How She Chose to Die. Compassion & Choices CEO Kim Callinan is quoted in the article, outlining the realities of this utterly humane and still-misunderstood option, such as many people even in states that have authorized the practice don’t know how it works or even that it exists, and that not only is it never foisted on people; it is actually a long, complicated and expensive pursuit, difficult to access for much of the population. Below is an edited excerpt:

My sister understood from Day 1 that she’d most likely die from this cancer, which, when advanced, has a mortality rate of 80 to 85 percent, according to Dr. Jason Konner, a gynecologic oncologist in New Jersey. One by one, women she had befriended in an online support group died, their last weeks and days often made awful by what Julie called “Hail Mary” treatments — drugs, many with harsh side effects, often used out of desperation or denial.

“I do not want to die like that,” my sister told me repeatedly. “This is about me taking control of my life.” She added, “I want you to write about this after I’m gone, because not enough people know about this option, even when it’s available.”

She was right. Few of our friends knew of this option, even those living in New Jersey. Kim Callinan, the chief executive of Compassion & Choices, a nonprofit that led the effort to pass New Jersey’s MAID legislation, told me these “laws are meaningless if patients are not aware they exist, which is why we focus on public education during the first five to 10 years after a jurisdiction has authorized medical aid in dying.”

To hear opponents of the right to die talk, you’d think it was easy to obtain the life-ending medications. New Jersey and most other states where MAID is legal require a patient to be a mentally capable adult resident diagnosed as being terminally ill by two doctors. Julie had to request the drugs twice verbally, with a minimum of 15 days in between each request. At the time of the second ask, she had to be given the opportunity to rescind her directive. The law also required her to sign a written request in the presence of two witnesses, one of whom could have no financial interest in her death.

Julie persisted.

With the MAID request approved, Maddy, Julie’s spouse of 35 years, picked up the prescription from a local pharmacy. The price: $900, which is not covered by Medicare, the Department of Veterans Affairs or many private insurance plans. A study published in The Journal of the American Geriatrics Society last year found that 96 percent of people who died by medical aid in dying were white and 72 percent had at least some college education. “The reality is that communities of color, for a wide variety of reasons, also are more likely to utilize aggressive care and less likely to use other end-of-life care options, such as hospice and palliative care,” explained Ms. Callinan. People without the resources to pursue MAID may be forced to make a different choice: suffer through a painful death or take matters into their own hands. “Be sure to include these statistics when you write about this,” my sister directed me.