Editor’s note: On Wednesday, Medicare, announced that it would reimburse doctors for end-of-life counseling. It’s part of an emerging conversation about end-of-life issues and the policy changes needed to give people more control over what happens to them in their final days.
This three-part series of stories by KHI News Service, and a video produced in partnership with Kansas City public television station KCPT, is about that conversation and the role that experts at two regional institutions are playing in it. The first story in the series focuses on efforts to encourage end-of-life discussions and the second on work to promote patient comfort through palliative care.
This year may prove to be a watershed for those pushing to change state laws throughout the country so that the terminally ill can receive a doctor’s aid in dying.
“The 2015 legislative session has been the busiest we have seen in our movement,” said Peg Sandeen, executive director of the Death with Dignity National Center, an advocacy group headquartered in Portland, Ore., the state that enacted the nation’s first aid-in-dying law in 1997.
The founding director of Sandeen’s group was chief author of the Oregon law, which became the model for those passed in Washington in 2008 and Vermont in 2013.
In May, another advocacy group, Compassion & Choices, filed a lawsuit in California on behalf of three people with terminal or advanced illnesses claiming the state constitution and existing laws already allow a doctor’s aid in dying.
Similar court cases were what made so-called “death with dignity” legal in the other two states that currently allow it: Montana and New Mexico. Efforts this year to undo the laws in Montana and Vermont were defeated.
Just this week, California lawmakers shelved a death-with-dignity bill that would have allowed terminally ill patients to get prescriptions to end their lives. The End of Life Option Act had passed the California Senate on a 23-14 vote in early June, after the California Medical Association changed its stance on the bill from opposed to neutral.
Sandeen said legislative action is preferable to court victories, citing what happened in Idaho. There a court ruled that physician-assisted dying was legal, and Idaho legislators reacted by passing a law saying otherwise.
“I’m really skeptical about the court approach,” she said.
In May, a committee of the Maine Legislature took less than an hour to approve, 7-5, a death-with-dignity bill that later was approved by the House but fell one vote short of approval in the Senate. Advocates say they’ll try again next year.
But resistance remains strong.
Earlier this year in Nevada, the chairman of a legislative committee killed an aid-in-dying bill without debate. The state’s leading newspapers wrote protest editorials saying the measure merited public discussion.
In Kansas, House Bill 2150, which was introduced in the House this session by the Vision 2020 Committee, was referred to the Health and Human Services Committee where, as in Nevada, it did not get a hearing. The inaction, though, failed to attract media attention or other significant public response.
Opposition to the laws in whichever state they are proposed generally remains strongest from the Catholic Church, Sandeen said. The anti-abortion group Right to Life also opposes the laws, she said, but “they don’t bring money to the table.”
Oregon report shows law’s use
Sandeen said early opponents of the Oregon law, which was passed by ballot initiative in 1994 but delayed by challenges in its implementation, have since seen that their concerns were overblown.
Despite 29-year-old Brittany Maynard’s highly publicized move to Oregon from California in 2014 to avail and advocate for the law, it has not made the state a magnet for people wanting to die, nor is there evidence that doctors or others are steering marginalized populations to use it more than others.
The Oregon Public Health Division, as required by the law, publishes an annual statistical report on how the law is used.
The law, which was narrowly drawn, allows terminally ill adults to obtain and use prescriptions from doctors for self-administered lethal doses.
The reports, now 17 years worth, show that few mortally ill people obtain the prescriptions and fewer still ultimately use them, although the number of people using the law has steadily increased. According to the first report, 24 people obtained prescriptions and 16 used them in 1998.
The latest report showed that 155 people obtained the drugs and 105 used them. That equaled 31 of every 10,000 deaths in the state, a fraction of a percent.
Since the law was enacted, 1,327 people have received prescriptions and 859 have died after taking them. Six people have regained consciousness after taking the medications. There have been few complications reported, though regurgitation or vomiting occurred 22 times.
The three most frequently mentioned end-of-life concerns were loss of autonomy (93 percent), decreasing ability to participate in activities that made life enjoyable (86.7 percent) and loss of dignity (71.4 percent). All those who took the drugs in 2014 died within an hour of taking them.
Prescribing physicians were present at time of death for only 14 of those who took the drugs. There were no referrals to the Oregon Medical Board for failure to comply with the law’s requirements.
Sandeen said experience proves that the Oregon law works well and said her group considers it the best model for other states.
Despite opposition from the Catholic Church and Right to Life, “many people might be surprised that we do not consider ourselves part of the progressive movement,” she said. “We have tons of support from across the spectrum. Our board president is a Republican; some of our strong supporters are very Republican with a Libertarian perspective. Out west, our Libertarians are more cowboy, not so religious, so the idea that government shouldn’t intervene in a personal decision is a strong message. But we really come from a nonpartisan point of view.”
‘Its own kind of focus’
The Institute of Medicine recently issued a 507-page report titled “Dying in America.” Among the things it didn’t get into were aid-in-dying laws.
Dr. Christian Sinclair, a palliative care expert at the University of Kansas Medical Center, was a member of the committee that wrote the report.
He said he thinks the laws merit broad public discussion but that it was best to omit them from the report because they are controversial.
“It probably deserves its own kind of focus,” he said. “The amount it would have taken (to adequately discuss them) would have dwarfed the rest of the report.”
Instead the group focused on recommendations it thought would have the broadest impact for the most people.
Dr. David Wensel, a hospice doctor in Topeka, said he opposes the laws and once wrote an academic paper explaining why.
“The perspective you’ll get from me is colored by years and years of practice in hospice and functioning in ethics teams,” he said. “My thesis concluded that patient-assisted suicide isn’t necessary if the patient’s suffering is addressed in the right way. Suffering is not just physical symptoms. It’s part of it, but not all of it.”
He said the “hubbub” that surrounded Dr. Jack Kevorkian, a lead figure in the assisted suicide movement during the 1990s, was unfortunate.
“I just wonder … if all those patients (of his) had encountered someone with palliative care experience, would they have had to choose between persisting and ending life?”