The physician-assisted, end-of-life debate received a jolt over the last few weeks as an unlikely heroine for the death with dignity movement emerged: terminally-ill brain cancer patient Brittany Maynard, 29. Facing a painful death — her seizures would have multiplied, intensified and lasted longer; her memory loss would have become permanent and her excruciating headaches would have left her in constant pain — Maynard chose to end her life her way.
Along with her husband, mother and stepfather, Maynard moved this summer from Northern California to Portland, Ore., one of only four states where adults with terminal diagnoses can legally determine when and how they will die.
The death with dignity movement began in the early '90s in Oregon when a ballot measure passed and eventually became law in 1997. The definition of death with dignity: mentally-competent adults who have a terminal illness may request that a doctor prescribe life-ending medication to be self-administered.
Around this same time, Dr. Jack Kervorkian became a lightning rod for the controversial act of euthanasia. Kevorkian estimated that he helped 130 people in physician-assisted suicide.
To date, Oregon, Montana, Washington and Vermont have state laws protecting death with dignity decisions and legally allow participating physicians to prescribe lethal doses of medication to terminal patients for self-administration. New Mexico courts have also upheld cases, although appeals are in progress.
Several other states have pending death with dignity legislation, including Connecticut, Hawaii, Kansas, Massachusetts, New Hampshire, New Jersey and Pennsylvania. A measure is set to be introduced in Colorado in January.
The 5 Wishes
Over the last 20 years, national Gallup polls have shown that the majority of Americans (70 percent) support death with dignity rights for individuals. And while end-of-life conversations are difficult, especially for adult children serving as family caregivers for their older parents, a Pew Research study found that 35 percent of Americans have actually put their wishes in writing.
To ensure that end-of-life wishes are carried out takes more than a discussion with your family. Patients need a legally binding document such as a living will, a durable power of attorney for medical decisions and a do not resuscitate (DNR) or do not intubate (DNI) order. One lesser-known document that is extremely powerful and helpful to caregivers is called The 5 Wishes. More than 18 million Americans have created a 5 Wishes document that meets legal requirements as a living will in 42 states.
The document outlines:
1. Who you want to make your health care decisions if you are unable
2. The type of medical treatment you want or don’t want
3. How comfortable you want to be
4. How you want people to treat you
5. What you want your loved ones to know
Trends in health care show that, as a nation, we are learning how to die with dignity. With the increase in hospice care at home or in long-term care facilities, more than half of the 2.5 million people who die every year can receive compassionate care that helps patients cope with end of life. That does not mean end-of-life wishes are overlooked in the hospital setting where the Centers for Disease Control and Prevention reports one-third of all deaths occur.
In May, several Los Angeles-area health care providers and hospitals (including my employer, Keck Medicine of USC) endorsed groundbreaking guidelines on how to facilitate patient end-of-life wishes. The guidelines require doctors, normally only schooled in saving lives, to explain clearly to patients when a medical treatment such as feeding tubes, intubation or dialysis, may deprive the person of life closure or preclude a peaceful death.
The guidelines are the compassionate care that California health care organizations are striving to achieve, where patients have the chance to say to a loved one, “I love you,” “forgive me” or “goodbye” one last time.
Choosing How To Spend Her Days
When Maynard’s April YouTube video about ending her life on her terms went viral (it recently surpassed 9 million views), that was because a youthful, vibrant, newly-married woman was deciding how her life would soon end. But dying at age 29 or age 99 should be the same.
Maynard said at the time: “I had no choice to be diagnosed with a brain tumor but I can make a choice how I spend my last day.” For Maynard, that meant being surrounded by family, free of terrible pain. She was upset that people would see her choice as suicide, calling that label for her situation “really unfair.”
For the person with the diagnosis, the dilemma is how not to have death affect loved ones in devastating ways. Maynard’s argument for choosing death with dignity was to spare her husband and parents the struggle of watching her in pain, losing her quality of life day by day, hour by hour.
Maynard released a second video saying that while her health continued to decline, she was still able to smile and laugh with family and friends. She considered letting the date she had chosen to die, Nov. 1, pass. But news reports confirmed that Maynard took her last breath on that day, in the arms of her husband and mother.
Maynard’s mother, Debbie Ziegler, said she would have been honored to become Brittany’s caregiver as she gradually lost her faculties. Ziegler would have lovingly bathed, fed and diapered her daughter as she had done when she was a child. But in the end, Maynard’s mother said the decision was her daughter’s.
“It’s not my job to tell her how to live and it’s not my job to tell her how to die,” said Ziegler on her daughter's video. “It is my job to love her through it.”
It is this gift of choice about how and when we will die that may be the most precious of all and the gift which family caregivers can become the partner in fulfilling.
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