Sara Myers was diagnosed four years ago with amyotrophic lateral sclerosis (ALS), a paralyzing, always fatal neurodegenerative disease.
“At the time I was told three to five years life expectancy. I am traveling down this road, not at a fast pace, but not at a slow pace either,” Myers, 60, said recently in her New York apartment, where she is confined to a wheelchair. “I am losing my ability to breathe, and I am opting not to go for a tracheotomy or ventilator."
“I’ve been trying to live each day as fully as I can,” she continued. “But when it gets to the point that my bad days outweigh the good, and I know that it’s only going to get worse, then I might decide to end my suffering then.”
Myers wants to be able to end her life with a lethal drug dose, if she chooses, while she is still able to swallow. She is among eight patients and medical professionals who filed suit in New York State Supreme Court recently, challenging a state law that bars physicians from prescribing life-ending drugs to dying patients.
“This is really about a patient’s choice to determine how he or she is going to die. It’s not a question of whether a patient is going to die, it’s a question of how they’re going to do it, and who’s going to make that decision” said David Leven, executive director of End of Life Choices New York, another plaintiff in the suit brought by the Disability Rights Legal Center.
Like others in the aid in dying movement, as supporters call it, Leven contends that it should not be considered suicide when a mentally competent adult in the end stages of terminal illness takes a lethal drug. But in all but five U.S. states it is illegal for physicians to assist terminal patients in ending their lives. The exceptions are Oregon, Washington, New Mexico, Montana and Vermont.
A patient's choice
Oregon’s “Death with Dignity” law is the best-known, largely because of the recent YouTube advocacy of Brittany Maynard.
A 29-year-old newlywed diagnosed with incurable brain cancer, Maynard did not want to die semiconscious or suffering in a hospital bed. She chose to move from California to Oregon in time to qualify as a resident and receive a lethal prescription.
“I want to be sure my husband and mother are with me when I die. I want to leave this earth in my home, in the arms of my husband and my parents,” she said in one of the videos she made before she ended her life last November.
The Oregon law requires two physicians to certify that a patient has a life expectancy of less than six months, is mentally competent, not suffering from depression, and is not being coerced. Patients must make two requests for aid in dying separated by 15 days, as well as a written, witnessed request, and must take the medication themselves.
In the 18 years since the law took effect, 1,173 people have received such prescriptions and 752 have ended their lives with them, according to state statistics quoted in a report by Compassion & Choices, a group that advocates for laws like Oregon’s. The group says that simply having the medicine as an option creates peace of mind for some dying people, who then choose to let the disease take its course.
Since Maynard’s death, lawmakers in at least 20 states, including New York and California, have introduced bills to legalize physician-assisted dying. They are opposed on religious grounds by Roman Catholic leaders, as well as by some disability rights groups who say the laws will be abused and lead to euthanasia.
T.K. Small, of the group Not Dead Yet, says patients will be pressured to end their lives, because health care for the dying is very costly, while lethal drugs are cheap.
“When you have a $300 prescription, versus a very expensive chemotherapy regime or just having somebody to help you in your home, that’s expensive,” he said in an interview. “A person who is a caregiver, who stands to inherit money, can be a witness when these forms and prescriptions are requested from a doctor. An individual receiving money under a will can literally go pick up the medicine, and there’s no other witnesses [to the death] involved."
Small noted that the terminally ill are able to speed up death by refusing food and fluids, while accepting pain medication. He would choose that palliative care method, he said.
“From what I hear there’s more morphine than you can shake a stick at in these palliative-care practices. It wouldn’t take long, a few days,” he said, adding, “I would feel comfortable knowing that I hadn’t compromised the existences of other people.”
Aid-in-dying proponents maintain that the palliative option can still entail great suffering, and isn’t ethically different from timing one’s death via a drug. Some people, bedridden and retaining fluid, have lived as long as two weeks. In her final video, Brittany Maynard explained why she had rejected palliative care.
“I can’t imagine what that experience would be like. I may be minimally conscious, still suffering and unable to move or speak,” she said, adding, “Death with dignity is a much swifter and peaceful way to pass.”
Supporters also contend that legalizing physician-prescribed aid in dying will prevent premature, often violent suicides by people diagnosed with terminal illness. Marcia Angell, a former editor of the New England Journal of Medicine, has written that her father, who shot himself rather than endure a lingering death from metastatic cancer, might have chosen to live longer had he known he could ingest a drug that would enable him to die quickly and without pain. In an essay for the New York Review of Books, she asked, “Why should anyone - the state, the medical profession, or anyone else - presume to tell someone else how much suffering they must endure as their life is ending?”
Recent polls report that a majority of Americans are coming to agree: about three out of four Americans now believe that terminally ill patients in pain should have the right to end their lives. A majority of physicians and several medical associations also now support legalizing physician-assisted deaths. The American Medical Association, however, continues to oppose legalization, saying it is “fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose societal risks.”