By Terri Hallenbeck
July 14, 2013
The first patient to use a lethal prescription that Dr. Nicholas Gideonse wrote was a man suffering from prostate cancer. He was grumpy and cantankerous. His legs were swollen. He was immobile and miserable, Gideonse said.
Once he had the medication in hand, Gideonse said, “He lit up.” The man later gathered his family and took the medication. Just the knowledge that he had regained his autonomy “elevated his mood,” the doctor said.
Gideonse, a family practitioner in Oregon, said he has written two to three dozen prescriptions since then for terminally ill patients who were seeking to hasten their deaths.
From 1997, when Oregon’s law took effect, through 2012, 673 terminally ill patients have used this method to end their lives, according to state statistics. In Washington, where a similar law took effect in 2009, 353 patients have ended their lives with a lethal dose prescribed by a doctor.
If experience with Vermont’s similar new law mirrors theirs, relatively few people will use the law, but the number of patients and doctors who participate will climb steadily each year.
Oregon voters passed the nation’s first “Death With Dignity Act” in 1994, but legal challenges delayed the law’s implementation until 1997. The number of patients using it to hasten their deaths increased from 16 the first year to 77 last year. The number of people asking for prescriptions increased from 24 to 115. The number of doctors participating rose from 22 in 2000 (the first year that was recorded) to 61 last year, according to data from the Oregon Public Health Division.
Oregon’s data show that a loss of autonomy is the most often-cited reason for patients who choose to take the medication.
Gideonse said he has found that to be the case. “The typical patient is in some pain,” he said. “Pain is not the main driver.”
Dr. Nancy Crumpacker, an Oregon oncologist who said she prescribed lethal medication for four patients before retiring in 1999, agreed that typically those who requested the prescription sought control. “Primarily, it’s ‘I want to be in control of the time I go,’” she said.
Barbara Coombs Lee, president of the national advocacy group Compassion & Choices, based in Denver, said, “The conversations have more to do with peace of mind and quality of life than a desire to die.”
Patients who opt for the law are prescribed either secobarbital or pentobarbital, both of which contain barbiturates and are used in lesser doses to treat short-term insomnia. In Oregon, statistics show most patients (79 percent last year) used secobarbital.
The medication, mixed with a liquid that patients drink and find quite bitter, acts quickly, Gideonse said. His patients slipped into a deep unconsciousness, he said; “It’s very, very peaceful.”
“I don’t think anybody took longer than an hour,” Crumpacker said of her patients’ deaths. “Family members will comment how peaceful they look, the concern in their face just went away.”
In Oregon and Washington, state law details the steps a patient must follow to obtain a prescription, many of which are designed to protect patients from being coerced or using the law capriciously. Patients have to have a doctor’s diagnosis of a terminal illness with less than six months to live. The doctor also must determine the patient is competent to make a reasonable decision. Gideonse said he’s turned down patients whom he thought fell short of that standard.
Patients have to be able to self-ingest 4 to 6 ounces of liquid medication without throwing up. That, too, has disqualified patients, Gideonse said. There’s a 15-day waiting period that disappoints patients who found they waited until they could no longer self-administer the drug, he said. Not all pharmacies participate, Gideonse said. Insurance sometimes covers the medication.
Data show that in Oregon, the median age of a patient using the law is 71; 80 percent have cancer; and 90 percent are enrolled in hospice. The median time between ingesting the medicine and losing consciousness is five minutes, and the median time from ingestion to death is 25 minutes. Twenty-two of 673 patients regurgitated the medication, and six regained consciousness. Nearly all of them took the medication at home.
Increasingly over the years, fewer patients have their physicians present as they take the medication, but it’s common to have a volunteer from Compassion & Choices in the room, Lee said. No physicians have been sanctioned for misusing the law, according to Oregon state medical epidemiologist Dr. Katrina Hedberg.
In at least a couple cases, there has been publicized backlash from patients on Oregon’s Medicaid program who were denied continued treatment of their illness but were advised that one of their other options was to seek a lethal prescription, a juxtaposition some found offensive.
Dr. Peter Reagan, a Portland family physician who also supports the law and like Gideonse works with Compassion & Choices, said it has fostered better conversations about dying.
“The thing I love about our law is the communication aspect. It just makes it legal for people to have these conversations with family and care providers,” he said.
Lee agreed that the law changed the conversation. “These conversations could not have taken place. Patients weren’t in control at all,” she said. “The big change for physicians is the change that this is not an illegitimate part of end-of-life practice.”
Gideonse offered this advice for Vermont doctors as they consider the new law: “You’re going to find it’s of such tremendous value to your patients to at least have that option available.”
Not everyone agrees.
Dr. Ken Stevens, a radiology oncologist in Oregon, said he had a terminally ill cancer patient ask him for the medication in 2000. The woman, Jeanette Hall, wanted no more treatment, he said, but he convinced her that treatment would help. He said he talked to her about her fears and persuaded her to try radiation and chemotherapy.
Five years later, he said, he saw Hall in a restaurant, and she thanked him for saving her life.
Hall said she has a new outlook on life and has turned into an advocate against laws like Oregon’s. She was told if she didn’t have chemotherapy and radiation, she had six months to live. At the time, she was 55 and saw only pain ahead of her.
“I did not want to suffer,” she said.
The treatment was difficult at times, she said, but worthwhile. “It’s great to be alive,” she said, noting she has watched her son graduate from the police academy, among other joys in the past 13 years.
She warned that such illnesses can make patients feel there is no hope.
“If you have a doctor that doesn’t want to fight for you, you’ll succumb to the law,” she said.
Stevens had opposed the law from the start and continues to advocate against it through a group called the Physicians for Compassionate Care Education Foundation.
“It gives doctors protection against writing a prescription to die,” he said. “I didn’t go into medicine to kill people. People in Oregon and people in Vermont have been sold a bill of goods.”
His advice to Vermont doctors: “They need to consider why they went into medicine.”