In Support of Maryland Death with Dignity Act

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The Health and Government Operations and Judiciary Committees of the Maryland House of Delegates held a joint hearing today about HB1021 – Richard E. Israel and Roger “Pip” Moyer Death with Dignity Act. Our executive director, Peg Sandeen, attended the hearing and for an hour and a half testified in support of the proposed bill and answered questions from the committee (the witness panel also included the current Delegate Shane Pendergrass, the primary sponsor of the bill, Stephen H. Sachs, a former Maryland Attorney General, and McShane Glover, a close friend of Dick Israel, who is one of the two people named in the title of the bill). This is the full text of the testimony.

Testimony in Support of Maryland’s Proposed Death with Dignity Bill

I am the executive director of the Death with Dignity National Center, an organization dedicated to improving and expanding the medical options available to terminally ill patients. In addition, I am a social worker, an instructor at the Portland State University School of Social Work, and the surviving widow of a terminally ill individual who wanted desperately to control the timing and manner of his death. As an advocate and a family member profoundly impacted by an avoidable and horrible dying experience, I strongly commend the sponsors of this legislation for your leadership in bringing this important issue forward.

Advances in medical technology have led to improvements in the care of dying patients that were unimaginable even 40 years ago. But these same breakthroughs have allowed some terminally ill patients to be kept “alive” far beyond any point of natural death, leading to extensive suffering and a diminished quality of life. To address this social problem, in 1994 Oregon enacted a carefully crafted Death with Dignity law that allows a terminally ill person to receive a prescription to hasten death safely and humanely, and requires that the medication be self-administered.

Oregon Death with Dignity Act

Now in its 18th year of successful implementation, the law sets forth precisely delineated conditions under which a patient may qualify for the medication. The bill under consideration in Maryland draws upon this model and the comprehensive peer-reviewed medical literature examining Oregon’s experience with it. These provisions act as safeguards to prevent abuse and medical mistakes, and they have worked exceedingly well. The requirements include a minimum age (18), maximum prognosis (6 months), waiting periods, repeated requests, second doctor’s opinion, and a finding of mental capability, as well as mandatory discussion of hospice and all other feasible alternatives.

The Oregon Experience

Annually, the State of Oregon issues a report on usage patterns related to Death with Dignity, and I would like to share some of findings from the most recent report. In the 17 years the law has been successfully implemented only 859 Oregonians have hastened their deaths under the auspices of the law. The Death with Dignity Act in Oregon is rarely used, in 2014, 3.1/1000 deaths were attributable to physician-prescribed aid in dying.

In those same 17 years, 1, 327 individuals have received prescriptions to hasten their deaths, meaning that over time about 30% of individuals who went through all the steps to qualify chose not to hasten their deaths, but rather died from their underlying terminal illness. For them, the Death with Dignity Act provided peace of mind and a modicum of control during their final days.

The data tell us that most participants had cancer (78%) or ALS (8.3%); died at home (94.6%) and were receiving comprehensive end-of-life care through participation and enrollment with hospice (90%). Sixty percent had private insurance, and 38% had a government-funded form of medical insurance like Medicaid or Medicare. Individuals who take advantage of Death with Dignity in Oregon are not individuals without other health care options. They are insured, cared for by hospice. They tend to die at home surrounded by their loved ones.

Death with Dignity Option a Comfort to Patients and Families

Oregon has proven that the existence of the legal option of physician Death with Dignity, though it is sparingly used, is of enormous comfort to terminally ill patients and their families; moreover, it has had a positive psychological effect upon countless others as they think about what kind of end-of-life care they would want if they were to experience terminal illness.

Despite the cataclysmic predictions of its opponents, the Oregon experience has also shown that such a legal alternative can be a catalyst for medical progress, prompting other improvements that enhance the overall medical care of terminally ill patients in the state. A robust process of public education and legislative debate can be expected to spawn new and creative proposals to advance end of life care in Maryland.

The process in which you are engaged is of the utmost importance to the people of Maryland, who want and deserve the highest quality, most humane end of life care possible. I applaud your efforts and offer my personal and professional assistance as you grapple with this profound subject.”
  
Image by Jimmy Emerson, DVM.

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We Testified in Support of Maryland Death with Dignity Act

The Health and Government Operations and Judiciary Committees of the Maryland House of Delegates held a joint hearing today about HB1021 – Richard E. Israel and Roger “Pip” Moyer Death with Dignity Act. Our executive director, Peg Sandeen, attended the hearing and for an hour and a half testified in support of the proposed bill and answered questions from the committee. This is the full text of the testimony.

Testimony in Support of Maryland’s Proposed Death with Dignity Bill

I am the executive director of the Death with Dignity National Center, an organization dedicated to improving and expanding the medical options available to terminally ill patients. In addition, I am a social worker, an instructor at the Portland State University School of Social Work, and the surviving widow of a terminally ill individual who wanted desperately to control the timing and manner of his death. As an advocate and a family member profoundly impacted by an avoidable and horrible dying experience, I strongly commend the sponsors of this legislation for your leadership in bringing this important issue forward.

Advances in medical technology have led to improvements in the care of dying patients that were unimaginable even 40 years ago. But these same breakthroughs have allowed some terminally ill patients to be kept “alive” far beyond any point of natural death, leading to extensive suffering and a diminished quality of life. To address this social problem, in 1994 Oregon enacted a carefully crafted Death with Dignity law that allows a terminally ill person to receive a prescription to hasten death safely and humanely, and requires that the medication be self-administered.

Oregon Death with Dignity Act

Now in its 18th year of successful implementation, the law sets forth precisely delineated conditions under which a patient may qualify for the medication. The bill under consideration in Maryland draws upon this model and the comprehensive peer-reviewed medical literature examining Oregon’s experience with it. These provisions act as safeguards to prevent abuse and medical mistakes, and they have worked exceedingly well. The requirements include a minimum age (18), maximum prognosis (6 months), waiting periods, repeated requests, second doctor’s opinion, and a finding of mental capability, as well as mandatory discussion of hospice and all other feasible alternatives.

The Oregon Experience

Annually, the State of Oregon issues a report on usage patterns related to Death with Dignity, and I would like to share some of findings from the most recent report. In the 17 years the law has been successfully implemented only 859 Oregonians have hastened their deaths under the auspices of the law. The Death with Dignity Act in Oregon is rarely used, in 2014, 3.1/1000 deaths were attributable to physician-prescribed aid in dying.

In those same 17 years, 1, 327 individuals have received prescriptions to hasten their deaths, meaning that over time about 30% of individuals who went through all the steps to qualify chose not to hasten their deaths, but rather died from their underlying terminal illness. For them, the Death with Dignity Act provided peace of mind and a modicum of control during their final days.

The data tell us that most participants had cancer (78%) or ALS (8.3%); died at home (94.6%) and were receiving comprehensive end-of-life care through participation and enrollment with hospice (90%). Sixty percent had private insurance, and 38% had a government-funded form of medical insurance like Medicaid or Medicare. Individuals who take advantage of Death with Dignity in Oregon are not individuals without other health care options. They are insured, cared for by hospice. They tend to die at home surrounded by their loved ones.

Death with Dignity Option a Comfort to Patients and Families

Oregon has proven that the existence of the legal option of physician Death with Dignity, though it is sparingly used, is of enormous comfort to terminally ill patients and their families; moreover, it has had a positive psychological effect upon countless others as they think about what kind of end-of-life care they would want if they were to experience terminal illness.

Despite the cataclysmic predictions of its opponents, the Oregon experience has also shown that such a legal alternative can be a catalyst for medical progress, prompting other improvements that enhance the overall medical care of terminally ill patients in the state. A robust process of public education and legislative debate can be expected to spawn new and creative proposals to advance end of life care in Maryland.

The process in which you are engaged is of the utmost importance to the people of Maryland, who want and deserve the highest quality, most humane end of life care possible. I applaud your efforts and offer my personal and professional assistance as you grapple with this profound subject.”
  
Image by Jimmy Emerson, DVM.

View full post on Death with Dignity National Center

Dignity Watch: Lawmakers in support of Death with Dignity

What a year it’s been for advancing Death with Dignity policy reform! All this activity is even more impressive considering many states have abbreviated legislative sessions this year.
Picking up on the momentum from Vermont enacting the first law of its kind on the east coast and the first passed through a legislative process, several lawmakers on the northeastern seaboard advocated for Death with Dignity bills with more enthusiasm than they have in the past. Bills were introduced by elected lawmakers in Connecticut, Massachusetts, New Hampshire, New Jersey, and Pennsylvania, as well as Hawaii and Kansas.

Many of the legislative committees considering these bills heard impassioned testimony about the importance of safeguarded assisted death legislation, regional newspaper readers and editorial boards took strong stances in support, and lawmakers spoke prominently about the Death with Dignity bills they support.

The Connecticut bill, introduced by Rep. Betsy Ritter and Sen. Edward Meyer, was the most actively discussed in public forums this year. On February 7th, the Hartford Courant editorial board published a strong endorsement of the proposed legislation. The Connecticut joint Public Health Committee heard public testimony on March 17th. Dozens of people—residents of the state, Connecticut elected officials, and lawmakers from nearby Vermont—showed up at the State House and over 400 people submitted written statements to share their thoughts about House Bill 5326.

Prior to the public hearing, then State Rep. Holder-Winfield spoke to voters about why he supports Death with Dignity while he campaigned for a vacated state senate seat. Previously an opponent of these laws, he changed his mind after witnessing his mother’s painful and protracted death in 2012. In an interview with the New Haven Independent he explained, “Going through that and watching her suffer changed my perspective. The whole time she was in pain. She was coherent. I think she would have liked the option.”

In this year’s short session, it was impressive the Connecticut bill received as much interest as it did. Typically the state legislature only considers budget-related bills. While the bill didn’t advance before the deadline, that it was even considered this year is an indication of the growing call for Death with Dignity policy reform.

Two states, Pennsylvania and New Jersey, have longer legislative sessions this year, and their Death with Dignity bills are still active for consideration. The Pennsylvania bill was introduced in 2013 and will remain active throughout this second year of their legislative biennium. Pennsylvania State Sen. Leach proposed Death with Dignity legislation because, as he mentioned in an editorial, “Ideally, the end of life is a time filled with sadness, but also sweetness, reconciliations and meaningful goodbyes. It is an intensely personal time that should be choreographed and lived by the person and the family affected.”

The champion of the New Jersey bill, Assemblyman Burzichelli, started his push for this legislation during the run-up to our 2012 near-win for Death with Dignity in Massachusetts, and after watching Vermont Governor Shumlin sign the bill into law last year, he was encouraged to reintroduce the proposed legislation again for the 2014-2015 biennium. In an online interview, he stated, “People want control of their circumstances and they want additional options.”

We couldn’t agree more with all of these outspoken elected lawmakers. That so many are courageously speaking openly in support of these laws allowing terminally ill individuals to decide their own fates is a bold step forward for our movement. Like you and I, these lawmakers believe all Americans should have the additional end-of-life options afforded to them under Death with Dignity laws. With your help, the National Center, and its politically-oriented sister organization the Death with Dignity Political Fund, will continue to support these efforts and set the course of the movement throughout the US.

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CT Lawmakers Hear Support for Death with Dignity

Attorney General George Jepsen, photo by Hugh McQuaid
Attorney General George Jepsen, photo by Hugh McQuaid

Connecticut lawmakers heard public testimony about a Death with Dignity bill before the joint Public Health Committee yesterday. Dozens of people—residents of the state, Connecticut officials, and lawmakers from nearby Vermont—showed up at the State House and over 400 people submitted written statements to share their thoughts about House Bill 5326.

Julie Dimmock, a retired nurse, shared her experience caring for people who were dying. From her testimony reported in the Norwich Bulletin:

Sometimes hospice is able to control people’s pain; other times they are not able to. When a person is deemed terminal with no chance of recovery, then I believe that person has the right to die as he wishes. It is not up to the medical profession to prolong the painful, imminent death of a patient. Who gave the doctor the right to choose what he wants, not what the patient wants? Supporting HB 5326 is the right thing to do.

CT News Junkie reported Connecticut Attorney General George Jepsen stated, “I believe it is cruel and inhumane to force an otherwise competent adult against their will to stay alive.” Speaking more broadly about Death with Dignity, he added, “This happens all the time but it happens in the dark and all the issues that you raise pursuant to coercion are swept under the rug. It would be much better and far more sensitive to bring it to the spotlight where there is an orderly process.”

Connecticut Comptroller Kevin Lembo told the committee he’d want the choice for himself if he had a terminal illness. Again reported in CT News Junkie:

“Whether or not I exercise my choice in the case of some future terminal illness would be decided by me with my family and my physician,” he said. “I hope that we can agree that no one party can impose their beliefs and positions on another. Careful construction of this law protects every individual from participation.” Lembo cited statistics from Oregon where 1,050 people had prescriptions for lethal medication written since the law went into effect. Not all of them opted to take their lives with that medication. He said 673 people have died from ingesting the medication in Oregon. “It’s clear that having the option, having the choice and having the medication is sometimes enough to help us weather any suffering.”

Committee members even heard from lawmakers in Vermont who recently grappled with and passed Death with Dignity legislation. Vermont Representative Linda Waite-Simpson worked to put her Connecticut counterparts minds at ease and, according to the Hartford Courant, urged them “to be courageous” and enact protections “for patients, for health care workers and for family and friends of the terminally ill who simply want the option of choosing the time and place of their death.”

Learn more about the public hearing on Connecticut’s public radio affiliate, WNPR, and keep checking our blog for the latest updates on this important effort to advance Death with Dignity policy reform in Connecticut.

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New Pew Findings: Support for Death with Dignity

Pew Research Center logo

Pew Research released new findings today on Americans’ attitudes about end-of-life care and available options. Eighty two pages in all, it’s an extensive report which looks not only at attitudes about Death with Dignity laws but also people’s feelings about:

  • Life-preserving treatments
  • Preparation for, documenting, and discussing end-of-life wishes
  • Views on medical treatment decisions by a healthcare proxy
  • Aging and quality of life

The report compares views about end-of-life care based on surveys conducted in 1990 and 2005. It’s the second in a two-part series by Pew Research Center’s Religion and Public Life Project exploring findings of surveys on bioethics questions. The first, published back in August, focused on Americans’ views on aging, medical advances, and radical life extension.

In order to be able to compare findings from prior reports, Pew researchers framed questions around Death with Dignity laws as suicide or physician-assisted suicide. As a recent Gallup poll found, language choice itself matters greatly when discussing different end-of-life options and how the question is asked can skew results.

Summarizing their findings, Gallup wrote, “Americans generally favor allowing doctors to assist terminally ill patients in ending their lives, but the degree of support ranges from 51% to 70%, depending on how the process is described.” Even using language which has been found to bias respondents, Pew still found the majority of respondents, 56%, say a person has a moral right to hasten their death when they have an incurable disease.

The report is accompanied by a historical look at Death with Dignity as well as other rights surrounding end-of-life care such as refusing treatment and proxy healthcare decisions. National Center executive director Peg Sandeen is quoted in the report explaining how Death with Dignity laws are founded in compassion:

This is about compassion. A compassionate society does not allow people to suffer unnecessarily. This lets [people who are dying] make their own choices during the last stages of their lives.

In other words, the laws our organization promotes put the decisions back in the hands of people who are dying. The laws allow patients to regain control of their lives at a time when it seems so much control has been lost and this allows them to get back to the business of living their lives fully right up to the end. To quote Peg again:

Death with Dignity is really about living life, and not death. For the terminally ill, life is often medicalized, centered around doctors and treatments. This frees up people in the final stages of life to really focus on life and the meaning of life, rather than doctors and medicine.

Peg’s comments echo those of doctor and ethicist Eric Cassell in The Healer’s Art who points out the ultimate goal of medicine is to help people stay in control of their lives:

If I had to pick the aspect of illness that is most destructive to the sick, I would choose the loss of control. Maintaining control over oneself is so vital to all of us that one might see all the other phenomena of illness as doing harm not only in their own right but doubly so as they reenforce the sick person’s perception that he is no longer in control. The doctor’s job is to return control to his patient.

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Why Do You Support Death with Dignity?

Thank you for your interest in hearing from us by email! People come to support Death with Dignity for all sorts of reasons. Please tell us more about why you support these carefully crafted laws.

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Ensure Your Long-Term Support with a Bequest

Dee, Death with Dignity supporter since 2001
Dee, Death with Dignity supporter since 2001

Dee has supported and advocated for clearly written and safe Death with Dignity laws since 2001.

I watched my mother, father, and two brothers die slow, horrible deaths. I’ve included the Death with Dignity National Center in my estate plans because I want to ensure future generations won’t have to suffer like my loved ones did.

My way of advocating for Death with Dignity is to help ensure the Death with Dignity National Center’s long-term financial strength. A wonderful way to accomplish this is to do what I’ve done and include them in your estate plans. In doing so you’ll leave a legacy of dignity to future generations.

Two of the most common ways are bequests and planned gifts. It’s never too late to plan ahead, and tax time is a good annual reminder to look at one’s estate plans. It’s very easy to include Death with Dignity National Center in your bequest; here’s some sample language to use:

I give, devise, and bequeath to the Death with Dignity National Center, 520 SW 6th Avenue, Suite 1220, Portland, Oregon 97204, EIN #: 93-1162366, ______% of my estate or the sum of $____________ (or describe stocks, bonds, life insurance, or other assets) to be used for the general purpose of defending and promoting Death with Dignity laws throughout the United States.

You can even designate the Death with Dignity National Center as a beneficiary on your life insurance or retirement plan to create a permanent legacy for change. If you have questions about including the Death with Dignity National Center in your estate planning, please email or call DeVida at 503.228.4415 or speak with your attorney.

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Why I Support Death with Dignity

Jim and Margie Carberry
Jim and Margie Carberry

A Message from Jim

My name is Jim Carberry, and like many of you who’ve come to support Death with Dignity, I watched a loved one die a painful and protracted death. My wife, Margie, didn’t have the option to die on her own terms, something she so desperately wanted.

I’m sharing my story with you because I strongly believe people should have the right to end their suffering when dying of a terminal illness. The only way to guarantee that right is to pass Death with Dignity laws modeled on the time-tested and safe Oregon Death with Dignity law.

My wife, Margie, was diagnosed with a Clival Chordoma in 1995. We had two small children, Alissa and Andrea, at the time and all she wanted was to see them graduate from high school. That would mean surviving 16 years from date of diagnosis, a highly improbable likelihood. She underwent numerous procedures to increase her chances. But the tumor was unrelenting and began stripping away various abilities.

Starting in 2008, Margie endured several very invasive procedures and had significant issues with her sight and mobility. She wanted to be there when our younger daughter graduated in 2011. At the same time, she was in a lot of pain. She was no longer the person she used to be, unable to participate in any meaningful activities for more than a few moments at a time.

Margie did make it to graduation, and a week later, she spoke with her family, clergy, and medical team and decided to remove her feeding tube and meet death on her terms. Though she was ready, she suffered another five weeks before her body gave out. Margie wanted the option to shorten her suffering, but that option doesn’t yet exist in her state.

Margie’s mother, Claire, and I have been vocal and public advocates for a Death with Dignity law in Massachusetts. Even though the law didn’t pass, it was a close one. This tells me our state is ready and many people want this choice. Just by being on the ballot, it ignited a critical conversation about Death with Dignity and end-of-life care.

I hope you’ll join me in supporting the Death with Dignity National Center—the organization behind the oldest Death with Dignity law in the nation. I know we can keep the conversation going and hopefully, not too far in the future, permanently change the dialogue in Massachusetts and beyond.

We all deserve to live in a society where we have the right to make our own end-of-life care decisions.

Margie would’ve wanted that for herself, and I know she would’ve wanted it for any terminally ill adult who’s enduring pain and suffering.

I hope you’ll consider a tax-deductible gift of $35, $50, $100, $250, or more today to keep our nation working toward improved end-of-life care policy everywhere.

Thank you on behalf of myself, my family, and above all, my wife, Margie.

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Two-Thirds of Likely Voters Support Massachusetts Death with Dignity

Suffolk University logo
Suffolk University logo

Another independent poll released this week showed winning support for the Massachusetts Death with Dignity initiative which will appear on the state’s November ballot. Tuesday’s poll conducted by Suffolk University and 7News, demonstrated 2/3 of likely voters would vote yes on the Death with Dignity initiative. The poll question had the same wording as what will appear on the November ballot:

Question #2 is the Prescribing Medication to End Life Proposed Law. A YES VOTE would enact the proposed law allowing a physician licensed in Massachusetts to prescribe medication, at the request of a terminally-ill patient meeting certain conditions, to end that person’s life. A NO VOTE would make no change in existing laws. At this point would you vote yes or no?

Yes………………………………….. 64%
No ………………………………….. 27%
Undecided…………………………. 10%

With just seven weeks before the general election, this poll echoes others indicating Bay Staters want more legal and safe options at the end of their lives. Learn more about what’s going on in Massachusetts from Dignity 2012 the coalition working in support of Death with Dignity. Most of us around the country don’t have the opportunity to vote on this issue, but but all eyes are on Massachusetts.

After all, the key to new Death with Dignity laws is an informed public. Your tax-deductible donation will help people in all states learn more about this critical end-of-life option. Please consider a gift today.

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Majority of Massachusetts Voters Support Death with Dignity

Public Policy Polling logo
Public Policy Polling logo

If Massachusetts voters had their say today, they’d approve of their Death with Dignity initiative by a winning margin. A new independent Public Policy Poll showed 58% of Bay Staters would vote yes for Death with Dignity. The poll question had the same wording as what will appear on the November ballot:

Question 2 would allow a physician licensed in Massachusetts to prescribe medication, at the request of a terminally ill patient meeting certain conditions, to end that person’s life. If the election was today, would you vote yes or no on Question 2?

Yes………………………………….. 58%
No ………………………………….. 24%
Undecided…………………………. 18%

This is an excellent sign; however, the race is far from over. With 77 days left until the election, opponents who object to Death with Dignity based on their own moral beliefs will waste no time in firing up their lie machine in an effort to mislead voters.

The key to new Death with Dignity laws is an informed public. Will you help people in all states learn more about this critical end-of-life option with a tax-deductible donation today?

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