I have an advanced neuromuscular condition and must use breathing support with a mask 18 hours a day. As a severely disabled person who depends on life-sustaining treatment, I would be able to qualify for assisted suicide at any time where it is legal.
If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled, healthy person who despaired over divorce or job loss.
“Patients suffering from any disease (not just those that typically qualify one for the DWDA [Death With Dignity Act]) may not be able to afford some treatments or medication, and may choose not to pursue some treatments or take some medication for personal reasons. . . . If the patient does not receive treatment or medication (for whatever reason) and is left with a terminal illness, then s/he would qualify for the DWDA.”
In the decade leading up to the passage of Oregon’s assisted suicide referendum in 1997, proponents often revealed their view that people with disabilities should be eligible. Two thirds of “Dr. Death” Jack Kevorkian’s body count were people with non-terminal conditions like multiple sclerosis.
The Hemlock Society contributed to his legal defense fund.
When the Hemlock Society morphed into “Compassion and Choices,” the messaging shifted, partly in an effort to exclude disability rights organizations from the public debate. Assisted suicide is only for people expected to die within six months, they said. The person must self-administer the lethal drugs, so no one else could kill them, they said.
Any reasonably trained lawyer should be able to see the absence of meaningful patient protections in assisted suicide bills. It took a decade to pass the Washington State statute that came next.
All along, disability groups have pointed out the inherent discrimination and empty pretense of safeguards in these bills. Why does everyone else get suicide prevention, while old, ill and disabled people get suicide assistance? How could a doctor who’s known a person for an average of 13 weeks know if they are being pressured to ask for assisted suicide?
Reported reasons for requesting assisted suicide pertain to disability, chronic or acquired due to illness.
Three of these reasons (feeling a loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home care services. However no disclosure or provision of such services is required. Basically, the law operates as though the reasons don’t matter, and nothing need be done to address them.
People who need home care shouldn’t be treated as disposable.
Assisted suicide proponents are fond of saying that many people don’t go through with it, but the lethal drugs give them peace of mind. What if some of the many who change their mind have family members who are not happy about it?
If the only other person present at the end is a greedy heir or tired caregiver, there are no safeguards to determine whether they self-administered the lethal drug or were cajoled, tricked or forced.
Although these and other obvious weaknesses persist in New Jersey’s assisted suicide bill (AB1504), the New Jersey Law Journal not only endorses it, but openly advocates expanding it to include active euthanasia and eligibility for people who are not expected to die in six months. No more incremental strategy, no need to hide the broader agenda.
Throughout last summer, people in wheelchairs with the group ADAPT were dragged out of Congressional hearings and arrested, leading successful efforts to save healthcare for millions of Americans. This same group asserts that “Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism.”
We urge New Jersey lawmakers to reject ableism, to look behind the public relations images of assisted suicide and consider the dangers to the many elders, ill and disabled people who are not safe from mistake, coercion and abuse.
Diane Coleman is the president and CEO of Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia.
So when it came time to end her life under a new California law for the terminally ill, her caregivers propped her up and held the cup as she drank a fatal mix of prescription drugs.
But physical assistance in taking the toxic medications is illegal, multiple experts contend.
Davis, a 41-year-old artist, suffered from Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS). The complications she experienced in taking her life while trying to comply with California’s assisted-suicide law are far from unique, a Des Moines Register investigation of assisted suicides around the nation found.
Such complications also offer reason to reconsider or adjust “right to die” efforts in Iowa, say both proponents and opponents of such a law here.
“This story and this data should give all Iowans reason to pause and to ask ourselves: Is this really the path we want to go down,” said Jenifer Bowen, executive director of Iowa Right to Life, a group that is most commonly known for its fight against abortion but that also opposes assisted suicide.
The Register this year launched a review of national data on assisted suicide in other states, prompted by renewed political debate over efforts to make Iowa the seventh state to allow doctor-assisted suicide for terminally ill patients.
But records on hundreds of deaths in the six states that allow physician-assisted suicide are nonexistent or incomplete. That makes it impossible to decipher whether applicable state law was followed or if vulnerable patients suffered unintended consequences, the Register found.
“Assisted suicide is nearly untraceable. There is minimal reporting and tracking,” said Marilyn Golden, a senior policy analyst for the Disability Rights Education & Defense Fund in California. “It almost appears as if the practice of assisted suicide has deliberately been made secretive, all with the claim of patient confidentiality.”
Among the 1,642 documented assisted suicides in Oregon and Washington since the states began reporting statistics in 1998 and 2009, respectively, the Register found:
COMPLICATIONS: At least 38 people (about 2.5 percent) experienced complications as they were dying, including regurgitation of the fatal medicine, seizures or waking up after taking the medication.
INCOMPLETE RECORDS: At least 478 deaths occurred without record of key details, such as whether complications occurred. At least 203 people have died without a record of whether the deaths were from ingesting medication or from natural causes.
PROLONGED DEATHS: In 2009, a person in Oregon took more than four days to die after taking the medication. Of the two states, Washington had the most complete data. For deaths where time was recorded, 17 percent took 91 or more minutes. In Oregon, the median time before death in 2015 was 25 minutes.
NO DATA: Two of the states where assisted suicide is an option — Vermont and Montana — do not track deaths at all. Data from California and Colorado, the most recent states to legalize assisted suicide, is not yet available.
Golden argues for ending legalized assisted suicide based, in part, on the data. But others warn the information should instead be used to rally for better laws. That camp includes Jennifer Holm, a 46-year-old Ankeny mother with multiple terminal illnesses.
Holm has been one of Iowa’s most outspoken advocates for assisted suicide. She says the data tell her that doctors should be allowed not only to prescribe the lethal drugs but to administer them as well, to help avoid complications.
“I know there are a lot of people who say, ‘That becomes a slippery slope,’ but that’s just not true,” Holm said, pushing back against critics who contend the physical act of a doctor’s assistance would lead to unsolicited euthanasia.
Struggling to die with her failing strength
Davis’ suicide became a team effort by sheer necessity.
“I didn’t know what to do,” said Heather Okray, Davis’ caregiver for two years who helped steady Davis’ hand as she drank the fatal mixture of medication and coconut gelatin. “They give us this completely absurd time limit you have to down your liquid in. And for an ALS patient — that I know every day can’t drink that much — we were looking for a Hail Mary there.”
Her withering body and what it meant to comply with the new law were very much on Betsy’s mind in her final weeks. “I’ve been meeting with doctors, and filing paperwork, and, well, this is my window,” she wrote to friends in an email. “I have just enough strength in my arm to self-administer the drug.”
But Betsy, one of the first patients approved under California’s End of Life Option Act, ended up needing more help than expected. According to her sister, a doctor at the scene told the group it was OK, but she declined to identify the doctor.
The California Board of Medicine and other experts consider that help illegal.
“At that point, our understanding of the law was that we couldn’t assist her,” Kelly said. “But we knew that no one was going to come and arrest — no one was going to get in trouble. But it was still just this kind of concern.”
Disputed meaning of ‘self-administer’
Kelly and Okray, Betsy’s caregiver, were left with a lingering question: Is there an easier way to do this?
Suffering from ALS, Betsy typifies patients in the end stages of a particularly scary, ruthless disease that leaves them powerless. Many advocates of assisted-suicide laws would consider somebody like her in desperate need of such an option. Yet the very law intended to help such patients is written so that it might exclude her.
And the family was unable to obtain secobarbital, a drug commonly used in assisted suicides. Secobarbital sodium is the most commonly prescribed drug in assisted suicides and widely considered to be the most effective. But Betsy, faced with a local shortage of the drug, was unable to attain it in time for her own suicide.
So instead, friends and family devised a plan to make a gelatin concoction to help make the morphine, chloral hydrate and phenobarbital more palatable.
“I think out of all of this, that’s what makes me upset,” Okray said, “is watching somebody die like that and knowing there was an easier solution to it.”
Kelly said she also was troubled by the legal gray area: Had they violated the “self-administer” clause of California’s law?
The law defines “self-administer” as the “physical act of administering and ingesting the aid-in-dying drug to bring about his or her own death.”
Kelly said she was reassured to learn, after consulting with the organization Compassion & Choices, that “taking the medication needs to be a conscious, affirmative act on the part of the patient.”
“That doesn’t mean they couldn’t hold a cup that a person is drinking out of,” said Matt Whitaker, state director in California of the organization, which supports assisted-suicide laws. “That would be fine.”
A spokeswoman for the Medical Board of California referred to her organization’s analysis of the law, which, in its view, “permits a person who is present to prepare the aid-in-dying drug (but not assist in the ingesting of the drug) without civil or criminal liability.”
Claire Marblestone, an attorney with the Foley & Lardner firm in Los Angeles, specializes in health care law and regulation. She and a colleague wrote about key requirements of the California law for the National Law Review.
The law’s requirements that patients “self-administer,” Marblestone said, is “a little bit untested.”
“It’s a very touchy subject with a lot of potential areas for gray,” she said.
What it could all mean in Iowa
California’s legal gray area now spreads to Colorado and may have consequences in Iowa as such laws reach further across the country.
Iowa Poll results in March showed 59 percent of Iowans favor allowing the terminally ill to end their own lives. That included a slim majority of Republicans (51 percent).
Iowa Republicans, including Gov. Terry Branstad, have not thus far supported physician-assisted suicide. But Sen. Joe Bolkcom, D-Iowa City, noted the effort has seen bipartisan backing in other states. He believes the lack of GOP support for the option in Iowa might change in the face of public support.
DES MOINES REGISTER
How far will Iowa doctors wade into ‘death with dignity’ debate?
The GOP has majority control of the Iowa House and Senate, beginning in January. Without Republican support, any bill on the issue cannot advance through the legislative process.
“I’ve not abandoned hope,” said Bolkcom, who plans to reintroduce a bill for the option in next year’s Legislature.
Bowen, of Iowa Right to Life, says her group is beefing up its opposition despite Republican control. She cited GOP lawmakers around the nation who have supported assisted-suicide laws. She believes her group must maintain an aggressive, ongoing educational effort about the issue.
“There may have been a Republican surge on election night, but we saw Colorado that night approve assisted suicide,” Bowen said. “We can’t take anything for granted.”
Tamales, a Tesla and a sunset: How Betsy Davis chose to die
Forty-one-year-old Betsy Davis went through the screening steps with her primary care physician soon after California’s End of Life Option Act took effect on June 9.
By this time, the neurodegenerative disease known as ALS had robbed her of the ability to walk, lift her arm to her face, or eat and drink without choking. Davis, the focus of a Des Moines Register investigation regarding the complications arising from physician-assisted suicides, dragged her right pinkie across the smooth surface of an iPad to control her TV with what little strength she had left.
“She was done living with ALS,” said her sister, Kelly Davis. “She wanted to put an end to her suffering.”
Betsy’s family was unable to obtain secobarbital, a drug commonly used in physician-assisted suicides but in short supply where Betsy was living. Instead, friends and family devised a plan to make a gelatin concoction to help make the morphine, chloral hydrate and phenobarbital more palatable.
On July 24, about 30 people gathered at Betsy’s rental home in Ojai, Calif., including her three caregivers and her doctor.
After a final dinner of homemade tamales, Betsy was dressed in a ceremonial kimono. (One of her unfulfilled bucket-list items had been to visit Japan.)
She was taken outside and driven in a new Tesla to a favorite spot near a grove of fruit trees and empty horse stables. She was seated on her massage table, which was sheltered by a canopy, and faced west, toward the evening sky.
That’s when one of her friends discovered the Jell-O mix wouldn’t congeal.
“It was kind of like Elmer’s glue,” said Heather Okray, Betsy’s caregiver. “It smelled like it, too. Like a really strong paint smell.”
Most of the assembled group said their final goodbyes before Betsy swallowed the medicine. The doctor stayed to watch.
The massage therapist helped Betsy sit upright and then leaned her back as she drank the glop. Okray helped Betsy with the cup. They stopped just once to wipe her chin and make sure she was taking all of the mixture.
“(Betsy) just totally focused on getting all the medication down as fast as she could,” Kelly said, noting the drink had to be completed in a window of two to eight minutes to quickly end her sister’s life.
“When it got to the point where Heather was just actually going to have to take the cup and hold it for Betsy, that’s when we turned and, like, looked at her doctor,” her sister said. ” ‘What are we supposed to do here? This is going to take too long.’ And the doctor said, ‘Go ahead and hold it for her.’
“What we thought the law said was that Betsy had to take the medication herself. So it was this effort to not — that we weren’t the ones holding the cup. That ended up just slowing down the process. And her doctor said, you know, ‘Go ahead and hold the cup for her; that’s OK.’ Because if she didn’t take all the medication — if she fell asleep before taking all the medication — she would be in a coma for a couple days and wake up. She had to take all of it.”
It took Betsy nearly nine minutes to drink the lethal dose — about a cup and a half of what her sister described as “sludge.”
“As soon she was done, she was out; we just kind of laid her down, and she was out,” Kelly said.
“This,” Kelly said of her sister, “is something that she felt strongly about — being able to have this choice.”
How California will track assisted suicides
Public records don’t yet show whether the complications Betsy Davis and her family experienced with California’s new End of Life Option act are common or a rarity.
Davis, a focus of a Des Moines Register investigation about complications with assisted suicides, was too weak to drink a deadly concoction of drugs without help.
Davis is one of the first to use the state’s assisted suicide law, which went into effect June 9.
The state’s first annual report compiling data on California’s physician-assisted suicides is due July 1. The California Department of Public Health is hiring two employees to manage data tracking for the End of Life Option Act.
That report, similar to those being kept in Oregon and Washington, will contain:
The total number of lethal prescriptions written;
The number of patients who died from those drugs and the rate of those deaths per 10,000 deaths in California over the same period;
The total number of patients with prescriptions who died, regardless of cause of death, with the cause of death listed;
The number of patients with prescriptions who died in hospice or a similar palliative care program;
The number of physicians who wrote lethal prescriptions;
The demographic percentages of those who died from the lethal drugs, according to the following categories: age at death, education level, race, sex, type of insurance (including whether they had insurance) and underlying illness.
California compiles the data through forms submitted by “secure fax or mail.”
The law requires physicians to submit the forms but does not outline penalties if they fail to comply. The Medical Board of California could issue citations and fines to physicians who don’t comply, as well as follow existing California law that would allow it to suspend or revoke licenses, among other professional penalties.
“No matter how much proponents try to portray their support for this misguided bill as compassionate, the reality is that the bill is anything but,” said Marie Tasy, executive director for New Jersey Right to Life. “The legislation is deeply flawed and will place the lives of our most vulnerable populations at risk of misdiagnosis, coercion and abuse.”
Senator Nicholas Scutari (D-22) reintroduced The Senate version of the Physician Assisted Suicide bill (S2474) on August 1, 2016. According to an article written by Star Ledger reporter Sue Livio, proponents are pushing for action on the bill by the fall of 2016. Read the article
Assemblyman John Burzichelli (D-3) reintroduced the Physician Assisted Suicide Bill (2451) in February of 2016. The text of the new bill, A2451, is now available on-line, is the identical to the previous version. We expect the Senate version to be introduced shortly.
Background on NJ Physician Assisted Legislation
The previous bill (A2270/S382) passed the NJ Assembly by one vote on November 13, 2014, but failed to garner enough support in the NJ Senate, and consequently, expired in the last session. Read the January 12, 2016 Press Release from the Alliance Against Doctor Prescribed Suicide here
11/13/14 State Assembly Vote
To see how your Two Assembly Members voted on November 13, 2014 and for background information on the Assembly legislative process in the last session, please click here
More information on efforts to legalize physician assisted suicide in NJ can be found on our webpages.
If you don’t know who your legislators are, go to the tab on the njrtl webpage marked, “Legislation” and add your 9 digit zip code. Once you add your 9 digit zip code, click “Go. A page will open that will provide pictures and names of your federal and state elected officials. (Helpful hint: you will need to use the scroll bar on the right hand side and scroll down to the bottom of the page to find your State Senator and Two Assembly Members.)
If your Two State Assembly Members voted No previously, please contact them and thank them for their No vote. Urge them to vote No again on A2451/S2474 if it comes up for a vote.
If your Two State Assembly Members Voted Yes, please contact them and tell them you are disappointed in their vote and that you expect them to vote No on A2451/S2474 if it comes up again.
If one or two of your State Assembly members are newly elected, schedule a meeting to speak with them and educate them about the dangers of Bill A2451/S2474.
An important victory that bolsters opposition nationwide
Trenton, NJ – “The New Jersey Alliance Against Doctor-Prescribed Suicide applauds the New Jersey Senate for recognizing the dangers to older people and those with disabilities and allowing S 382, legislation to legalize assisted suicide, to die without a vote on the floor of the Senate,” stated Kate Blisard of Not Dead Yet. “People are surprised to learn that all major national disability groups that have taken a position on the issue oppose the legalization of assisted suicide because the dangers of misdiagnosis, coercion and abuse put us at great risk.”
“A bi-partisan group of New Jersey Senators took the time to listen to the disability-rights community and to understand why it is important that doctor-prescribed suicide not become law in New Jersey,” continued Democratic Senator Peter Barnes. “It became clear that this bill would have a detrimental impact on vulnerable populations and expose them to abuse, coercion and possible denial of health care because it costs more than suicide drugs. While the bill’s few, vocal supporters educated legislators as to their personal concerns, it became clear that there are other solutions than doctor-prescribed suicide to address end-of-life pain. For that reason, there was never a groundswell of support for this bill and, on balance, we heard from many more voices opposed to this bill.”
The New Jersey Alliance exposed the following flaws in S 382:
No requirement of mental health evaluation or pain relief consultation.
Permits an heir to witness a death request.
Requires no oversight on whether the patient was willing to take the lethal drugs.
No requirement that a medical person be present to supervise the ingestion of lethal drugs.
Allows a third party familiar with how the patient communicates to make the death request.
Permits lethal drugs to remain in a patient’s home without securing them.
Relies on the inaccurate premise that a doctor can predict death within six months.
No distinction as to whether the death prediction is with or without treatment of the patient.
No required notification of family members.
Immunizes from prosecution anyone participating in administering lethal drugs, even if their participation was coercive and out of self-interest
Falsely certifies the cause of death.
The New Jersey Alliance Against Doctor-Prescribed Suicide is a broadly-based, diverse coalition of organizations strongly opposed to the legalization of assisted suicide. Alliance organizations include:
Resources for Independent Living
Dial, Inc. Center for Independence
Center for Independent Living
Heightened Independence and Progress – Bergen
Heightened Independence and Progress — Hudson
Progressive Center for Independent Living
Total Living Center
National Council on Independent Living
Not Dead Yet
Disability Rights Education & Defense Fund
Autistic Self Advocacy Network
Association of Programs for Rural Independent Living
New Jersey Alliance Against Doctor-Prescribed Suicide is a coalition of disability rights, healthcare, civil rights, faith-based and patient advocacy organizations dedicated to preventing legalization of doctor-prescribed suicide in New Jersey.
On July 7, 2015, members of the California Assembly Health Committee pulled the bill after lack of support due to serious concerns about the bill.
Physician Assisted suicide legislation has been introduced in 24 states, To date, none of these bills have passed. A NJ bill (A2270/S382) passed the full Assembly in November of 2014 and was released from the Senate Health Committee on December 15, 2014 without recommendation. It is still pending a full vote in the NJ Senate.Since January, 2015, physician assisted suicide legislation was defeated in Connecticut, Maryland, Delaware, Colorado, Wyoming, Maine Utah, Rhode Island and Nevada.
Please continue to call, email and meet with your State Senator to urge him/her to Vote No on A2270/S382. Please also call the Governor 609 292 6000 and urge him to veto this bill if it reaches his desk. Thank you.
California assisted death bill finished for the year
Senate Bill 128 stalls in Assembly Health Committee
California’s controversial assisted death bill is done for the year, according to the Assembly Health Committee.
In an e-mail to legislative offices, committee secretary Patty Rodgers wrote, “The authors will not pursue this bill this year – waiting on a statement from the authors explaining details and future plans.”
Senate Bill 128 would have allowed doctors to prescribe lethal drugs to terminally ill patients. It passed the Senate last month, but stalled in the Assembly Health Committee two weeks ago over increasing objections from Latino Democrats.
But the Catholic Church remained firmly opposed to the bill, arguing that it was an ethical violation. Proponents were not able to sway a majority of members on the Assembly Health Committee, some of whom pointed to personal experiences that counseled them against backing the bill.
“You’ve got to look at what I’ve done before the Legislature … working to help save and protect peoples’ lives, giving that option – a second chance at life,” Assemblyman Freddie Rodriguez, D-Pomona, who worked as an emergency medical technician, said Monday. “Letting folks have that option to end their life, it’s just something I can’t come to grips with.”
Some members denied that religious objections were a decisive factor.
“There are times when I can be in clear policy opposition to the church – clearly with a pro-choice stand as a Democrat, I can say ‘no’ to the church,” Assemblyman Miguel Santiago, D-Los Angeles, a practicing Catholic who once weighed entering the seminary, said on Monday. “It’s more of an internal struggle of how to look at the end of life more than any impact of religious or political” pressure.
Alexei Koseff: 916-321-5236, @akoseff. Jeremy B. White of The Bee Capitol Bureau contributed to this report.
Despite passage by the House, Senate support falls one vote short.
THE ASSOCIATED PRESS
AUGUSTA – Maine lawmakers have defeated a bill that would have allowed doctors to provide lethal doses of medication to terminally ill patients.
Republican Sen. Roger Katz’s bill died Tuesday because the Senate and House failed to agree on the bill.
Katz and other supporters said that people who don’t have much time left to live should be free to end their life when they are ready. But opponents said lawmakers should focus on expanding access to palliative care. They said they feared it would send the message that the state of Maine condones suicide.