After years of debilitating headaches, Brittany Maynard learned she had a form of brain cancer that could cause her great pain before she died. Her home state of California did not allow her doctors to help her legally commit suicide, but Oregon did, and she moved to Oregon so that she could “pass in peace,” as she said in a video posted on YouTube. She died at the age of 29 from pills prescribed to her under Oregon’s “Death with Dignity” Act. Three months later, her husband and mother stood with a group of California lawmakers to announce the introduction of assisted suicide legislation. “Please help me carry out my daughter’s legacy,” said her mother, Debbie Ziegler, according to news accounts. “Please help me assure that other terminally ill patients don’t face what we had to face.” (The legislation eventually passed; California's physician assisted suicide law went into effect on June 9, 2016.)
Washington and Vermont have their own physician assisted suicide laws, and in New Mexico and Montana judges have ruled in favor of the practice in test cases. Under Oregon’s law, patients who request the pills must be at least 18, capable of making and communicating health decisions, and suffering from an illness expected to lead to death within six months. Their request must be signed by two people, including someone who is not an heir, relative, or the patient’s doctor. The doctor must discuss alternatives to assisted suicide. If a mental health problem is suspected, a psychiatrist or psycholgist must evaluate the patient. Patients also must wait for 15 days before they receive their prescription, typically either secobarbital or pentobarbital. When they take it, they go unconscious in one to 40 minutes and die within days. Half die in fewer than 20 minutes.
Many Oregonians who might be eligible don’t ask for a prescription, and about a third of patients who do never take the pills, according to state records. “It’s like having a parachute,” says Arthur Caplan, who heads the bioethics division at New York University’s Langone Medical Center. “People think, ‘If things really get bad, I can do something.’”
Among the patients who die from the pills, the most common end-of-life concerns stated on state questionnaires are losing autonomy and dignity as patients. About a quarter say they are worried about pain. Less than 3 percent cite the cost of their care. Most of them are seniors, not young women like Maynard, and they typically have cancer and are under hospice care.
Advocates of physician assisted suicide laws argue that doctors often need to make decisions about withdrawal of life-support from terminally ill patients, when the patients are unconscious and can’t consent. Although many doctors would choose a "do not resuscitate" status themselves if they were terminally ill, they also feel compelled to perform aggressive treatment on patients facing a similar terminal condition. Aggressive medical intervention can prolong a terminally ill patient's life, but it can also prolong their suffering, with no hope for a cure. A clear law would introduce state oversight and could protect patients, giving them decision-making power. As Caplan, who believes that Maynard’s death was an ethical choice, puts it, “The patient takes the pills.”
Some doctors may welcome more clarity and appreciate the trust placed in them. “I trust my ability to sit in front of my patients face-to-face, to hear what they have to say about their illness, to collaborate with my colleagues in moments of uncertainty and to compassionately ally myself with their goals to alleviate suffering to maintain dignity,” medical student Heather Alva writes.
In Belgium and Holland, people are eligible if they are in pain, even if they are not terminally ill. Caplan has been watching the evolution of assisted suicide in those countries with a worried eye. “I want a bright line around terminal illness,” he says, ruling out a legal suicide option for people diagnosed with dementia, for example. He also took seriously the criticism that physician assisted suicide laws could become a way of denying expensive end-of-life care to vulnerable groups. Oregon’s experience persuaded him. “I think we’ve shown that we can do this without worrying about killing the poor or disabled,” he says. “I’ve never seen it happen in Oregon and Washington that people have been pressured.”
He now hears about four times a year from terminally ill patients, or their family members, seeking his input. He asks if the patient has considered the services of a hospice and if the family is comfortable with the idea of assisted suicide. Patients often say that “they don’t want to burden their family emotionally or financially,” he says.
Is it ethical to try to persuade someone you love to keep fighting the disease or stick out the pain? Up to a point, Caplan says. “I think it’s fine if relatives and friends try to talk you out of it, but if they see you’re suffering, I don’t think there’s many families who would say, ‘Please continue for me.’”
June 09, 2016
Christopher Nystuen, MD, MBA