Week 21/2015 in the Death with Dignity Movement

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Last week (May 18 to May 25, 2015) was huge in the movement.

The California Medical Association dropped its opposition to physician-assisted dying and is now neutral on SB 128. Also in California, another lawsuit was filed asking for the state to allow physician-assisted dying.

A similar lawsuit was filed in Tennessee, where a bill had been referred to a summer working session.

In Vermont, the Governor signed a bill solidifying the safeguards in the original Death with Dignity bill, Act 39 – A Patient Choice and Control at the End of Life Act.

And in Maine, a joint legislative committee passed the proposed Death with Dignity bill.

California

While SB 128 – End of Life Option Act underwent a fiscal impact study in the Senate Appropriations Committee, the California Medical Association changed its stance on the bill to neutral. Learn more →

Maine

Maine’s bill moved out of committee on a close but clear vote.

Tennessee

John Jay Hooker, a terminally-ill attorney who is a staunch advocate for Death with Dignity, filed a lawsuit asking for the state to allow physician-assisted dying.

Vermont

Governor Shumlin signed S.108, a bill that removed sunsets on safeguards from the original Death with Dignity bill. Learn more →

Elsewhere and Other Stories

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Maine’s Death with Dignity Bill Clears the Joint Standing Committee for Health and Human Services

This is a report from last Friday’s working session at the Maine Joint Standing Committee for Health and Human Services by our long-time supporter and volunteer, Valerie Lovelace.

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Valerie Lovelace is the executive director of the nonprofit It’s My Death, which she founded to honor a promise to her sister Dee, dying of cancer, “to teach others how to be with dying, how to speak and listen to one another the way we had learned to speak and listen, and how to go on even when afraid.” She is an inter-faith minister, ordained by calling, studying and practicing in the traditions of her elders and teachers, who are Native American, Christian, and Buddhist. She is a hospice volunteer, artist, and the parent of three adult children. She is also a homeopathic practitioner and a Reiki Master, retired from the U.S. Navy, and a trained EMT. She lives in Maine.

The 127th Maine legislature’s Joint Standing Committee on Health and Human Services approved LD 1270, An Act Regarding Patient Self-Directed Care at End of Life, on May 22, 2015 by a vote of 7 to 5 in a working session lasting less than one hour. Twelve of the committee’s thirteen members were present for the session.

The week prior, the Committee heard verbal testimony for several hours and received 44 pieces of written public testimony.

The bill, which will allow qualified terminally ill patients to ask for and ultimately receive a life-ending prescription medication from a physician, was first introduced April 7, 2015, and referred to the Joint Standing Committee for public hearing. Having passed that wicket, the bill must now pass sessions with the House and Senate.

Something quite special about LD 1270: it is the product of four bills independently introduced by different sponsors: Senator Roger Katz (R, Kennebec), and Representatives Roberta Beavers (D, District 2), Stephen Wood (R, District 57), and Patricia Harlow (D, District 36). None knew the others were working on a bill for patient self-directed end-of-life care. The four sponsors soon joined forces to submit a single bill, and the result of that effort is LD 1270, a strongly bipartisan proposal endorsed by six additional co-sponsors: Representatives Erik Jorgensen (D, District 41), Richard Campbell (R, District 130), Kathleen Dillingham (R, District 72), Brian Hubbell (D, District 135), Diane Russell (D, District 39), and Senator Dawn Hill (D, York).

“Ultimate Civil Liberty”

A particularly strong sentiment behind this bill is that of liberty. Two committee members spoke passionately about the end of our lives being a place of intimate privacy where “ultimate civil liberty” ought to prevail. That sentiment echoed through the room and I spoke with a number of folks afterward who repeated those words.

I have to be honest: the expression brought tears to my eyes, too. Having sat by the bedside of a number of dying people who spoke of the need for such a freedom, it was music to my ears hearing it from members of the committee.

Here in Maine, like other rural states, our legislators split their time between representation and full-time occupations elsewhere. Among committee members who supported LD 1270 are a physician, a family nurse practitioner, a healthcare program manager, a real estate broker, a human services provider, and a program manager for a statewide hunger relief organization.

Apprehension arising from testimony and the working session revolve around two central themes: conscious, voluntary choice for anyone participating (including pharmacists whose beliefs may be in conflict), and concerns for placing vulnerable populations at risk, including those whose health insurance may want to opt for the least expensive options.

Refuting Opposition Arguments

Insurance concerns arise from allegations that LD 1270 will ultimately lead to slippery slopes. Yet, 17 years of data and a lot of research say that isn’t so. Cases often cited in the argument are that of Randy Stroup and Barbara Wagner, both of Oregon and both of whom were initially denied on-going treatment for cancer by their state-operated health insurance plan. The two were notified by letter that their diagnoses qualified them in Oregon for all end-of-life services, including palliative/hospice care, home services, and/or an end-of-life prescription. The allegations, truthfully, point to problems in the 2008 administrative limitations of Oregon’s Health Plan, and not to problems in Oregon’s Death with Dignity law. The cases are typically cited out of context and generally don’t share the entire story. It is absolutely unconscionable that these two people felt harmed by their insurance company’s limitations. In both cases, the individuals did receive the treatments they sought after contacting media. And well they should have.

The obvious safeguard in these laws, of course, is that there is a lengthy, formal process that must be initiated by a qualifying patient’s request to their physician for a life-ending medication. Neither Mr. Stoup nor Ms. Wagner made such a request, either verbally or in writing, nor were they ever at risk for being forced to choose life-ending medication.

It feels certain that concerns will always arise with legislation like Maine’s LD 1270. I certainly hope so. Having the discussion is an integral part of the process to crafting careful legislation that ultimately will provide an end-of-life prescription choice for those who wish to have it available, and safeguarding for those who want to choose otherwise.

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Week 20/2015 in the Death with Dignity Movement

Last week (May 11 to May 17, 2015), a proposed Death with Dignity bill received a hearing in Maine and the California bill moved forward through the Appropriations Committee.

California

The Senate Appropriations Committee forwarded SB 128 – End of Life Option Act for budget impact assessment, while Californians continue to debate the issue. Meanwhile, just today, the California Medical Association dropped its opposition to physician-assisted dying and is now neutral on the proposed bill.

Maine

Nevada

Senate Bill 336 – Nevada Patient Self-Determination Act died without a hearing, the issue remains on the table. And, the Senate Health and Human Services Committee Chair, Sen. Hardy, MD, who effectively killed the bipartisan bill by not allowing it to be heard, is facing increased criticism from Nevadans.

Elsewhere

…And Other Stories

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A Report from Maine Death with Dignity Bill Hearing

This is a report from last Friday’s Maine House Committee Hearing on LD1270 – An Act Regarding Patient Self-Directed Care at End-of-Life by our long-time supporter, Valerie Lovelace.

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Val is the executive director of the nonprofit It’s My Death, which she founded to honor a promise to her sister Dee, dying of cancer, “to teach others how to be with dying, how to speak and listen to one another the way we had learned to speak and listen, and how to go on even when afraid.” She is an inter-faith minister, ordained by calling, studying and practicing in the traditions of her elders and teachers, who are Native American, Christian, and Buddhist. She is a hospice volunteer, artist, and the parent of three adult children. She is also a homeopathic practitioner and a Reiki Master, retired from the U.S. Navy, and a trained EMT. She lives in Maine.

Maine’s Motto is “Dirigo” or “I Direct” or “I Lead” and its tagline “The Way Life Should Be.” I’m proud of how hard my legislators work to ensure our laws are fair, straight forward, and seek to ensure as much freedom as possible. It’s a balancing act, for sure. What I love about the process is that at the end of the day, when a piece of legislation is enacted, it’s been hammered over to produce the best and safest possible piece of legislation.

Attending the First Hearing for LD1270

Maine’s LD1270, An Act Regarding Patient Self-Directed Care at End-of-Life, enjoyed its first public hearing on Friday, May 15, 2015, in Augusta before the Joint Standing Committee for Health and Human Services. The bill, sponsored by Senator Roger Katz and co-sponsored by nine others, is closely modeled on Vermont’s Act 39, Patient Choice and Control at End of Life.

I was excited to go to the hearing for a number of reasons.

  • Foremost, I am committed to the needs of dying people and believe our dying is the most intimate event we will ever experience – our final act of living. As such, I hold it sacred to the individual.
  • Secondly, it was my first time to the State House and first time being an actual participant in the legislative process as a concerned citizen.
  • Finally, the bonus for me is that it was my birthday.

Legal, Professional, and Emotional Testimonies

It was a rare gift, indeed, to hear testimony after testimony regarding the need for a safe, legal end-of-life prescription process in Maine. Senator Katz spoke eloquently about the bill and what it offers, what it safeguards, and how it addresses concerns generally voiced in opposition. He was followed by a number of co-sponsors who also testified, some with profoundly personal stories of loss. Following that testimony, citizens had three minutes each to speak for, against, or neither-for-or-against the bill.

Supporters came forward with both professional and deeply moving personal stories, demonstrating a clear understanding of the bill. Voices in support, voices in opposition, voices offering neither for-or-against critiques: all heard, all noted, and all to be taken into working session.

I spoke briefly and submitted written testimony. My feeling is that the personal stories and experiences of all who came to support LD1270 sent a clear, unified message to our legislators: “Dirigo.” The way life (and the end of life) should be: self-directed.

Next Steps for Maine’s Death with Dignity Bill

I’m awestruck by the enormity of the task that lay ahead for this committee, who will enter working session for the bill on May 22, 2015. They will read mountains of testimony, research key points they want to understand better, dig into the legislative workings of the bill, challenge whether safeguards are reasonable, whether choice is reasonable, and whether, in the grand scheme of our living and dying, it makes good sense to embrace this end-of-life option for Maine.

I trust the process. Each of these legislators, I believe, will do their best to comprehend the bill, learn about end-of-life prescriptions and how LD1270 proposes to make that a safe process for competent, terminally ill adults who want to choose an end-of-life prescription to use as their death becomes more imminent.

We here in Maine took a good first step.

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Week 19/2015 in the Death with Dignity Movement

News Scrabble

Last week (May 4 to May 10, 2015) the Vermont House approved a bill that would remove sunset provisions from the Patient Choice and Control at End of Life Act, the state’s Death with Dignity law. Because the representatives amended S.108 with a reporting clause, the Senate must approve the new version of the bill before Governor Shumlin signs it. Earlier, an amendment to repeal Act 39 was defeated 83 to 60. Representative Sandy Haas said in the media that seven patients have used the law since it passed in 2013.

Elsewhere

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Oregon Death With Dignity Act: Four Challenges that Ensured the Law’s Success

This article originally appeared in the Spring 2015 issue of Trial Lawyer magazine, the quarterly journal of the Oregon Trial Lawyers Association.

Just over twenty years ago, on November 8, 1994, Oregon became the first state to decriminalize “physician assisted suicide.” On that day, by a margin of 51 to 49 percent, voters passed the Oregon Death with Dignity Act, a ballot initiative now codified at ORS 127.800-127.897.

The Death with Dignity Act permits state licensed, Drug Enforcement Administration (DEA) registered physicians and pharmacies, to prescribe and dispense Schedule II and lower controlled substances to competent, terminally ill, adult patients seeking to hasten an impending death in narrowly defined circumstances (see, e.g., ORS 127.815 – Responsibilities of the attending physician).

I was a lead author of the Oregon Death With Dignity Act. I was also the lead political and legal strategist during the 1994 campaign to pass the law, and again during the 1997 campaign to prevent its legislatively inspired repeal. I also represented the law’s chief petitioners during the first round of federal court litigation (1995-1997), and a physician and a pharmacist during the second round of federal court litigation (2002-2006).

Key to understanding the lens through which I view end of life issues is knowing that I have two physicians in my family (both now deceased) and, as a new lawyer, I worked for a firm defending physicians. This exposure has provided me with valuable perspective, particularly with respect to the all important medical standard of care. More important, however, was the time I spent as an undergraduate student in religious studies, an experience that informs my thinking on ethical issues as much or more than does being a lawyer.

And key to understanding the Oregon Death with Dignity Act is knowing that the law has never been as controversial as many may have first assumed.

Four days before its passage, 20 years ago, Pulitzer Prize-winning columnist Ellen Goodman quoted me as saying, “We haven’t tried to change the way people die or the way people ask for help. We have attempted to bring something out of the dark and into the light and at the same time provide safeguards.” [Ellen Goodman, "Gentle Into the Night," The Baltimore Sun, November 4, 1994] My point then was that dying patients were already hastening their deaths by accumulating and ingesting prescription drugs, occasionally with assistance from their physicians, and we had codified that covert practice into a ballot initiative. We had also proposed a medical standard of care, along with sensible public policy limits, that we termed “safeguards.”

Although I did not view the narrowly written Oregon Death with Dignity Act as controversial, controversy was plentiful in the early 1990s. The so-called “right to die” movement was riding a fresh wave of support. By 1990, Dr. Jack Kevorkian was already notoriously famous when Janet Adkins left her comfortable southwest Portland home and traveled to Michigan to hasten her death in Dr. Kevorkian’s Volkswagen bus. The next year, 1991, Derek Humphry, a prominent advocate working and living in the Eugene, Oregon, area, published his book, Final Exit, a how-to manual for those seeking to hasten death. It went straight to the top of The New York Times bestseller list. That same year, Washington voters defeated Initiative 119, a citizens’ initiative that would have permitted euthanasia and lethal injection. The following year, 1992, California voters defeated Proposition 162, another similar proposal that would have permitted euthanasia and lethal injection.

It was in this politically charged climate that the Oregon Death with Dignity Act was drafted by a small group in 1993. One of our goals was to remove the controversy. We sought to keep Dr. Kevorkian’s conduct illegal, while rendering Derek Humphry’s book unnecessary, at least in Oregon. We very briefly debated, but unanimously rejected, the concepts of euthanasia and lethal injection. These concepts were central to the recently defeated ballot initiatives in Washington and California and they were very important to the political advocates at the time, but they were also concepts borrowed from other countries. What I discovered through my direct observations during the 1991 and 1992 campaigns in Washington and California, and what we all learned from our work in Oregon leading up to 1993, is this: Political advocates aside, no patient or family member was asking for help along the lines of euthanasia or lethal injection. Patients and their families, instead, wanted access to oral medications that they could later ingest, with the guidance and support of their physicians. They not only wanted it, they were getting it, sometimes with the help of their physicians. Once we understood and accepted this fact, we were able to draft the Oregon Death with Dignity Act, a public policy breakthrough. This is the point I was stressing to Ellen Goodman (quoted above) four days before that fateful election 20 years ago. We had codified an existing covert practice and added a medical standard of care with clear boundaries.

First steps down a long path

Although voters passed the Death with Dignity Act in November 1994, a significant accomplishment in itself, our work was only beginning. There would be a succession of legal and political challenges initiated by our opponents that would all fail but help ensure our eventual success. First, before Oregon’s new law could take effect, it was enjoined from operation by a federal district court. [Lee v. State, 869 F. Supp. 1491 (D. Or. 1994)] The law would not go into effect for another three years, until a reversal was obtained from the Ninth Circuit Court of Appeals. [Lee v. State of Oregon, 107 F.3d 1382 (9th Cir. 1997)] What has never been acknowledged is that the district court’s injunction helped us. But for that injunction, the Oregon Death with Dignity Act would have taken effect 30 days after its passage (OR Const. Art IV § 4(d)). Few, however, and certainly not the institutional stakeholders necessary to the law’s eventual success, were ready so soon after the 1994 election to implement such a major policy reform. With the benefit of hindsight, the federal court injunction intended to forever prevent the law, instead preserved it for successful implementation three years later, in the fall of 1997.

Second, because our eventual success on appeal seemed highly likely in 1997, opponents had been lobbying the Oregon Legislature to repeal the new law. A direct legislative repeal was not possible because Governor John Kitzhaber, M.D., said he would veto a repeal. Instead, the legislators referred a repeal measure, Ballot Measure 51, to the voters. Thus, in 1997, to preserve the Death with Dignity Act, we were now required to win both our appeal and a second statewide election. We won both. The Ninth Circuit Court of Appeals reversed the lower court and vacated its judgment, Lee v. State of Oregon, supra, 107 F.3d 1382, and, in October of 1997, the United States Supreme Court denied the government’s petition for certiorari. [Lee v. Harcleroad, 522 U.S. 927, 118 S. Ct. 328, 139 L. Ed. 2d 254 (1997)] The law was in effect. Soon thereafter, on November 4, 1997, Oregon voters defeated Measure 51 by a margin of 60 to 40 percent. The repeal effort had backfired.

Before the second election, opponents often criticized the narrow passage of the Death with Dignity Act in 1994 as evincing too little support for too controversial a subject, but the 1997 repeal effort changed all that. It produced a clear voter mandate—60 percent of voters defeated the repeal of the Oregon Death with Dignity Act. Voter support had never been higher. Popular support was higher still. The second statewide election, like the district court’s injunction, ensured the eventual success of Oregon’s new law. The political controversy in Oregon had been settled, and, with the benefit of three more years of public discussion while the Death with Dignity Act was under injunction, all involved were not only better prepared, but much more willing to implement Oregon’s new law.

Having won two statewide ballots (1994 and 1997) and the first round of federal court litigation spanning 1995-1997, the Oregon Death with Dignity Act was for finally free of legal or political challenge. It was only the quiet before the storm, however. The third significant challenge was about to unfold in Congress, where members concerned about Oregon’s new law, including then-Senator John Ashcroft, sent a letter in 1997 to the Director of the DEA, contending that the use of controlled substances to hasten a terminally ill patient’s death was not a legitimate medical practice and therefore violated the Controlled Substances Act (CSA). That letter further invited the DEA to prosecute Oregon physicians and pharmacists who aided patients under Oregon’s novel law. Although the director of the DEA, Thomas Constantine, responded favorably, Attorney General Janet Reno concluded that the DEA could not prosecute Oregon practitioners who acted in accordance with Oregon law, because the CSA did not authorize the DEA to “displace the states as the primary regulators of the medical profession, or to override a state’s determination as to what constitutes legitimate medical practice.” Soon thereafter, legislation was introduced in Congress to grant to the DEA the explicit authority that Reno found lacking. The Lethal Drug Abuse Prevention Act was introduced in 1998, followed by the Pain Relief Promotion Act in 1999. Either Act would have enabled prosecutions of practitioners acting under Oregon’s new law, but neither passed. The Death with Dignity Act survived yet another challenge, this time from Congress.

Fight not over

As fate would have it, a fourth challenge was looming. In 2001, Senator John Ashcroft was appointed United States Attorney General. Exercising his new role presiding over the DEA, Ashcroft sought an opinion from the U.S. Department of Justice, Office of Legal Counsel, on whether a prescription issued to hasten a death under the Oregon Death with Dignity Act was a valid prescription under the CSA and its implementing regulation. On June 27, 2001, the Office of Legal Counsel issued a memorandum concluding that “assisting in suicide is not a ‘legitimate medical purpose’ that would justify a physician’s dispensing controlled substances consistent with the CSA.” On November 6, 2001, Ashcroft released an Interpretive Rule, published in the Federal Register on November 9, 2001, that adopted the analysis of that memorandum and declared that “assisting suicide is not a ‘legitimate medical purpose’ within the meaning of 21 CFR 1306.04 (2001) and that prescribing, dispensing, or administering federally controlled substances to assist suicide violates the CSA” [66 Fed Reg 56608 (2001)]. The Interpretive Rule further provided that the “Attorney General’s conclusion applies regardless of whether state law authorizes or permits such conduct by practitioners or others and regardless of the condition of the person whose suicide is assisted.”

In response, the State of Oregon, a physician and a pharmacist (my clients), and several terminally ill patients challenged the Interpretative Rule in federal court. The U.S. District Court for the District of Oregon, Honorable Robert E. Jones presiding, issued a temporary restraining order and then a permanent injunction preventing the attorney general from enforcing his Interpretive Rule. [Oregon v. Ashcroft, 192 F Supp 2d 1077, 1084 (D Or 2002)] On May 26, 2004, the Ninth Circuit Court of Appeals affirmed the district court’s analysis and judgment. [Oregon v. Ashcroft, 368 F3d 1118 (2004)] In holding the Interpretive Rule unlawful and unenforceable, the Ninth Circuit held that it, “violates the plain language of the
CSA, contravenes Congress’ express legislative intent, and oversteps the bounds of the Attorney General’s statutory authority.” [Id. at 1120] The Ninth Circuit concluded:

“In sum, the CSA was enacted to combat drug abuse. To the extent that it authorizes the federal government to make decisions regarding the practice of medicine, those decisions are delegated to the Secretary of Health and Human Services, not to the Attorney General. The Attorney General’s unilateral attempt to regulate general medical practices historically entrusted to state lawmakers interferes with the democratic debate about physician-assisted suicide and far exceeds the scope of his authority under federal law. We therefore hold that the Ashcroft Directive [i.e., the Interpretive Rule] is invalid and may not be enforced. [Id. at 1131]

Our fight was still not over. The battle continued on to the U.S. Supreme Court where the justices affirmed the Ninth Circuit:

“The Government, in the end, maintains that the prescription requirement delegates to a single executive officer the power to effect a radical shift of authority from the States to the Federal Government to define general standards of medical practice in every locality. The text and structure of the CSA show that Congress did not have this far-reaching intent to alter the federal-state balance and the congressional role in maintaining it.” [Gonzales v. Oregon, 546 US 243, 275, 126 S Ct 904, 925, 163 L Ed 2d 748 (2006) (Kennedy, J)]

Twelve years after passage of the Death with Dignity Act, the second round of federal court litigation had concluded. The legal controversy was settled. The opinion of the U.S. Supreme Court in 2006 was the last word, leaving no doubt that it was the state’s proper role to regulate the practice of medicine, even when that practice allows a physician to prescribe a controlled substance to hasten a terminally ill patient’s death. Proponents of the Oregon Death with Dignity Act had beaten back a fourth significant challenge.

Down a road of reform

With the benefit of hindsight, the campaign to pass and protect the Oregon Death with Dignity Act was a 14-year campaign, spanning 1993 through 2006. Newly freed of the need to defend the Oregon Death with Dignity Act, proponents immediately began work with other states to bring about similar reforms. The most notable successes include the 2008 voter-approved Washington Death with Dignity Act, codified at RCW 70.245.010-70.245.904, and the 2013 Vermont Patient Choice at the End of Life Act, codified at 18 VSA §§ 5281-5291.

That work continues.

Eli D. Stutsman, JD, is a private practice lawyer specializing in appeals. He was a lead author of the Oregon Death with Dignity Act and served ten years, from 1995 to 2005, as the founding President of the Death with Dignity National Center. In the photograph, he is pictured speaking to reporters in front of the U.S. Supreme Court, in 2005.

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Week 18/2015 in the Death with Dignity Movement

Last week (April 27 to May 3, 2015) saw an important milestone for the movement in Vermont, where the House passed a bill removing sunset provisions from Act 39, the state’s Death with Dignity law. Debate continued in California and New York, and we also saw stirrings of a future debate on Death with Dignity in Illinois.

Vermont

Elsewhere

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Week 17/2015 in the Death with Dignity Movement

Last week (April 20 to April 26, 2015) served as an indication that as legislative sessions wind down around the country, Death with Dignity recedes from the forefront of media attention and people’s minds.

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Week 16/2015 in the Death with Dignity Movement

Last week (April 12 to April 19, 2015) a debate unfolded in North Carolina following the introduction of a Death with Dignity bill, modeled on the Oregon law. In Delaware, a Death with Dignity bill, to be introduced in a matter of weeks, received initial scrutiny. And the National Health Care Decisions Day raised awareness about the importance of advance care planning.

Delaware

The Death with Dignity conversation started ramping up here as Representative Paul Baumbach prepares to introduce a bill.

North Carolina

The state debated its first-ever Death with Dignity bill.

Elsewhere

Image by Shawn Hoke.

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Week 15/2015 in the Death with Dignity Movement

Last week, a Death with Dignity bill, SB 128 – End of Life Option Act, passed in the California Senate Judiciary Committee. A proposed bill was heard in a Rhode Island House Committee. North Carolina saw a bill introduced for the first time.

Bills in Connecticut, Nevada, and Tennessee legislatures died in committee: after Committee hearings the Connecticut bill failed to come up for a vote for the third time in as many years; the Nevada bill will not receive a hearing; and the Tennessee bill was tabled for interim study.

These are the highlights of the most important developments in the movement around the United States from April 5 to April 11, 2015, with the corresponding media coverage.

California

The End of Life Option Act cleared another hurdle in the Senate when it passed in the Judiciary Committee by a partisan vote of 5 to 2. The bill is next headed to the Appropriations Committee in May.

Connecticut

For the third time in as many years, a Death with Dignity bill did not come out for a Committee vote in the State Legislature.

New York

Advocates for Death with Dignity are gearing up to a push for the proposed legislation.

Elsewhere

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