WASHINGTON – Brittany Maynard’s decision to die soon by a legal, lethal prescription, rather than let a brain tumor kill her, has provoked a national conversation and debate about end-of-life decisions.
In a new video, released Wednesday, she says she feels herself getting sicker by the day. But since she still feels joy in living, she’ll postpone her day of death past the date originally announced — Saturday.
Maynard, 29, has inspired raging arguments about the values, even about the vocabulary, underlying the choices we make about our last days. Her goal, she still says, is to “influence this policy (on physician-assisted dying) for positive change.”
As ethicists, activists and religious voices square off, here are five things to know about death and dying.
Maynard’s choice is popular.
Choosing the day of your death — when you are already dying of a terminal illness — can be a moral act, many Americans told the Pew Research Center in a 2013 survey on end-of-life views.
Even so, the survey found a statistical tie on the legality of “physician-assisted suicide,” the method chosen by Maynard: 47 percent approve, but 49 percent are opposed. Meanwhile, nearly one in three Americans (31 percent, including most blacks and Hispanics) say they want their doctors to do “everything possible to keep them alive, even in the face of incurable illness and pain.”
The Roman Catholic Church calls physician-assisted dying a dangerous and immoral step toward actively killing vulnerable people, as well as a “disturbing ‘perversion’ of mercy. True ‘compassion’ leads to sharing another’s pain; it does not kill the person whose suffering we cannot bear,” said St. John Paul II, who suffered publicly with a string of ailments at the end of his life.
The National Association of Evangelicals agrees. In a new resolution titled “Allowing Natural Death,” it called terms such as “aid in dying” and “death with dignity” signposts on the road to euthanasia.
“That’s a fallacy,” said Dr. Bruce Scott, a geriatrician and palliative care specialist in Dayton, Ohio, who deals daily with the elderly.
“The slippery slope argument against physician-assisted dying is a rhetorical tool used by people who want to decide for others what they should or shouldn’t do,” said Scott. “No one makes people choose this. Not that many people ask for a prescription, and not all who get a prescription ever use it.”
No one wants to prolong dying.
We just can’t agree on the exact line between life and death.
Consider the case of California teenager Jahi McMath, who was declared brain-dead by physicians in California nearly a year ago. She is maintained on life support at a care facility in New Jersey — a state that allows people to reject a finding of brain death on religious grounds. Court documents describe Jahi’s family as “Christians with firm religious beliefs that as long as the heart is beating, Jahi is alive.”
The girl’s Baptist parents may find support in the NAE’s Oct. 16 resolution. It specifies a definition: The Uniform Determination of Death Act (1980), which defines death as the “irreversible cessation” of the heart or all functions of the “entire brain, including the brain stem.”
This brain death definition is not as obvious as it seems at first glance. Some argue that a person who may never again have a conscious thought (a higher brain function) but still has some involuntary nervous system actions (a brain stem function) is not dead.
This was not an issue until the last half-century, before medical advances and new technologies such as ventilators added months, even years, to people’s lives — and to their dying process. Meanwhile, surgeon and best-selling author Atul Gawande, in his new book, “Bring Mortal,” points out that medical schools and hospital training teach future doctors “almost nothing on aging or frailty or dying.”
End-of-life planning provokes debate, too.
Most people see advance directives (documents such as a living will, a health care proxy or a set of orders signed by a physician) as a great idea — as long as they agree with the content.
But they don’t always. Most disagreements center on whether people should rule out the dreaded “machines” — life-support technology such as ventilators and feeding tubes.
Advocacy groups that stress personal autonomy offer guidance on how to refuse a high-tech, hospital-bound death. Compassion & Choices, which houses Maynard’s video on its website, offers a “Good to Go Resource Guide and Tool Kit.” Death with Dignity, which lobbies for legalization of physician-assisted dying, offers similar resources.
Not so fast, say some religious voices. They argue for relying on faith, family and the beneficence of medical professionals.
The Catholic Church firmly discourages people from spelling out in their directives that they will refuse artificial nutrition and hydration (i.e., feeding tubes) under certain conditions such as permanent unconsciousness.
Meanwhile, just 35 percent of Americans, no matter what their end-of-life wishes, have told family, friends or physicians their preferences or put them in writing.
Neutral sources such as the Center for Practical Bioethics’ “Caring Conversations Workbook” and the online MyDirectives site are designed to get people thinking, talking and signing off on whatever they want while they are still alert and able.
Some choose another exit: no food, no water.
No one knows how many people, facing a terminal illness or debilitating condition, end their lives by voluntarily stopping eating and drinking (VSED), but the method is drawing increased public attention.
Compassion & Choices offers counseling and a how-to guidebook offering “peace at life’s end — anywhere.” Dying With Dignity in Canada, where physician-assisted death is illegal, offers similar guidance and a DVD called “Dying Wish” featuring the last days of a man who chose VSED.
Wanda Morris, CEO of the Canadian group, said VSED is a valuable choice because “many more people will die gently if they can stop life support than if we can change the law.”
Two ethicists wrote in the bioethics journal The Hastings Center Report that even people with advanced Alzheimer’s have a right to refuse food and water if this is specified in directives signed when they were competent.
But Wesley J. Smith, a consultant with the Patients Rights Council, which opposes physician-assisted dying, attacked VSED in the conservative journal First Things. He wrote that starvation is not a dignified death. “The supposed bright line dividing the right to refuse medical treatment from a purported right to euthanasia will be obliterated,” Smith warned.
Suicide is. (fill in the blank).
What do you call Maynard’s choice? She does not call it “suicide.” She says, in the face of an incurable tumor, she just wants to die as she lived -— a person of self-determination.
Others say this is a distinction with no difference.
Evangelical author and disability activist Joni Eareckson Tada schooled Maynard to turn to God, “who alone has the right to decide when life should begin and end.”
To which writer Sarah Jones replied: “If I were dying, I suspect that a sermon from someone who doesn’t understand my situation and would rather use it as an opportunity to evangelize would only contribute to the moment’s misery. ”
Whatever term you use, said Scott, the Ohio physician, the ways that people choose — or don’t choose — to spend their last days is a complicated expression of their values and those of their doctors and their loved ones.
“The best we can do under our human limitations is to gauge the patient’s goal and preferences — length of life vs. quality of life. If a trade-off needs to be made, which is more important?”
Often people will believe they will be the outliers — the people who beat the odds — and they will turn to all the treatments available. “We pile optimism on top of optimism,” Scott said.
But others “choose better time, not longer time,” he said. “They choose to be home, not in the hospital. They say, ‘If I can’t talk with my friends and family, my time isn’t valuable to me.'”