Life with Dignity

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This guest post is from Karen Kaplan, who in 1992 became one of the the first 200 female rabbis in the world. In 2007 she became a board-certified chaplain and served in hospices on the East Coast for 7 years. She is the author of the book Encountering The Edge: What People Told Me Before They Died which consists of true quirky stories about her hospice patients and what they most cared about and believed in (the book is available on Amazon and wherever books are sold, as a softcover or as an ebook; excerpts and reviews are available at the website of Pen-L Publishing.). Karen also blogs at Offbeat Compassion.*

Being a healthcare chaplain is like being a detective. When a person on hospice talks with me about dying, I immediately want to hunt for what is beneath the surface. How are they talking about it? Why during this particular visit? What are they not saying? If they are asking to die ahead of schedule, I especially want to help them express what is driving this wish. I cannot help but wonder if some people who opt for a doctor-assisted death would no longer find it compelling if they only had the right venue to (1) unbury unresolved emotional and spiritual distress, and (2) to fully understand it and fully feel it by relating it out loud to a nonjudgmental listener who is willing to receive it. I strive to provide that safe and sacred place.

Providing Life with Dignity

Such a place is rarer than we might expect. Almost anyone we talk to has their own agendas, their own emotional baggage, their own anxieties and discomforts. Most people rather talk than listen. We all know that, because when we are trying to talk about something that triggers strong emotions, we do not get very far without being interrupted. Even worse, the content of their interruptions often minimize or otherwise dismiss our feelings. Thus many people are deprived of the dignity of having their feelings honored. As a chaplain and as a hospice chaplain in particular, my aim is to provide life with dignity such that terminal patients will more likely be emotionally and spiritually at peace when they die. I think society should advocate for more of such care as yet another safeguard against a doctor-assisted death that need not happen. As much as the death with dignity movement wants to ensure a dying person’s legal rights to have control over his or her death, I do think it is their duty to put at least as much energy into ensuring all other alternatives have been exhausted. Thus, for example, properly trained chaplains for end-of-life care should be funded not just for hospice patients but for anyone facing death who is not on hospice and who wishes to talk with one.

The last time I was invited to write for this blog, I answered the editor’s question about why I chose to write my career memoir, Encountering The Edge: What People Told Me Before They Died. This time I would like to share an excerpt from this book that shows how one of my patients, who I will call Mrs. Wilson, grappled with her search for meaning as she discussed her own end.

From Encountering The Edge

I had a 97-year-old patient who could be witheringly blunt about her concerns about her own death as well as just about everything else. Mrs. Wilson usually turned down my offers to visit, but accepted just often enough for me to keep trying as I made my rounds in the assisted living section. Her refusals were very abrupt and off-putting, so I had to coax myself to keep giving a knock on her door and not give up. One day she was seated by a small round table sorting through her mail, and deigned to let me in “for a few minutes but that’s all.” She delegated the task to me of throwing away each rejected piece one by one. (Apparently they and not I were the object of rejection that day.)

Mrs. Wilson was mourning her own end, which she could not have been blunter about. She assailed me with question after question concerning her impending nonexistence. It was all I could do to force myself to keep my eyes on her face and not hem and haw. Looking at me as if ready to confirm I would disappoint her by having no answers, she asked, “How do I prepare to die? What do I tell my children?” I talked of reviewing loose ends in relationships and of pondering her legacy, but she rejected those options as readily as the doomed pieces of mail. “I have no loose ends to resolve,” she retorted. Given some mutterings over certain family members during former visits, I knew this was hardly the case. But there was no reason to challenge her. Furthermore, I believe that some of the things chaplains and social workers and therapists say to the people they serve are like time capsules. After the visit is long over, the patients may choose to release those words into their consciousness. Words that initially were jarring can soothingly cleanse away hurts that had been held in bondage for a good period of time. Before I left, she went on to say that my responses to her questions confused her. So she was already considering the provocative implications of my answers, while I was left wondering what she had hoped to hear me clarify.” (When I saw her a few weeks later, she had stopped putting up barriers to our interaction, acting more kindly than I had ever seen.)

The Final Lap

This particular excerpt is clearly not about someone who wants to have help with an early death. But it does show the complexities and ambiguities involved in making sense of our current and past life against the poignant drama of knowing we are in the final lap. May we not be too hasty in procuring our own end lest we miss out on some of the most significant scenes before the final curtain descends.

* This blog posts does not constitute Death with Dignity National Center’s endorsements of these publications. All subheadings are ours, not the author’s.

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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

Image by InSapphoWeTrust.

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California Senate Judiciary Committee Passes SB 128 – End of Life Option Act

The California Senate Judiciary Committee on April 7 approved Senate Bill 128 – California End of Life Option Act by a 5 to 2 vote.

With the vote, California took another step towards providing Death with Dignity as an end of life option to its 39 million citizens.

We applaud Senators Lois Wolk, Bill Monning, and others for sponsoring legislation whose time has come. We were pleased to play an integral role in the drafting and deliberations of the bill, and honored to speak before the Committee on the Oregon experience and our exemplary implementation of the law.

The End of Life Option Act will next be considered in the Senate Appropriations Committee, with a hearing to take place in May. In the meantime, we will continue to work with the bill sponsors to promote the bill’s passage.

Help make this bill become law!

  • Thank the Senators voting Aye. The bill moved out of this committee by a vote of 5 to 2, along party lines. Please contact Senator Hannah-Beth Jackson (Chair, D-Santa Barbara and Ventura Counties), Senator Robert M. Hertzberg (D-LA/San Fernando), Senator Mark Leno (D-San Francisco/San Mateo), or Senator Bob Wieckowski (D-Fremont/Alameda and Santa Clara Counties) (Senator Bill Monning, SB 128 co-sponsor, also voted in favor) to exppress your appreciation for their vote, especially if you live in their district.
  • Thank the bill sponsors. Call, email, or send a letter to SB 128 sponsors, Senators Bill Monning (D-Carmel) and Lois Wolk (D-Davis) in appreciation of their leadership on the issue. Or use our online Thank You card below.
  • Share your story. Heartfelt personal stories were a crucial part of the Committee testimony in favor of the End of Life Option Act. Please fill out this simple form to let us know how you got involved in the Death with Dignity movement or why you support California’s proposed legislation.
  • Make a contribution. We remain optimistic the law will pass, but for that to happen we need your support. It is thanks to you that we are able to do our work in promoting Death with Dignity laws in California and elsewhere. Your gift will stay in California and help promote SB 128 as it moves through the legislative process. Thank you.

About SB 128 – California End of Life Option Act

The California End of Life Option Act closely follows the model of the Oregon Death with Dignity Act with some modifications, most of which are required to comply with the California statute. Similar to the Oregon law, the California End of Life Option Act provides that only qualified, terminally ill adults who are residents of California may request and obtain prescriptions from their physician for medication that the patient has the capability to self-administer. A person may not qualify solely because of age or disability.

In order to receive the prescription the terminally ill patient is required to have two physicians confirm the patient’s prognosis of six months or less to live and that the patient has the mental competency to make health care decisions for him or herself. Two oral requests to be made to a physician, a minimum of 15 days apart, in addition to one written request with two witnesses attesting to the request before the prescription can be written.

In addition, the proposed bill includes voluntary participation by doctors, pharmacists and healthcare facilities, safeguards against any coercion of patients by establishing felony penalties for coercing or forging a request, and a patient’s right to rescind the request.

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Week 14/2015 in the Death with Dignity Movement

Last week, Maryland legislators decided to not vote on proposed Death with Dignity bills, effectively delaying them until the 2016 session. California enjoyed the success of the proposed End of Life Option Act in the Senate Health Committee and geared up to this week’s Judiciary Committee hearing. Montana rejected a proposed ban on physician-assisted dying. And ten years passed since the Terri Schiavo case brought assisted dying into the national spotlight (read more in TIME Magazine).

These are the highlights of the most important developments in the movement around the United States from March 29 to April 4, 2015, with the corresponding media coverage.

California

The Death with Dignity debate continued apace in California following the bill’s passage in a Senate Committee.

Maryland

The Richard E. Israel and Roger “Pip” Moyer Death With Dignity Act was delayed until next year.

Montana

The ban on physician-assisted dying failed in the Montana Senate.

Elsewhere

Image by InSapphoWeTrust.

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Week 13/2015 in the Death with Dignity Movement

Last week the Death with Dignity movement registered an important success in California, where the Senate Health Committee approved the proposed Senate Bill 128 – End of Life Option Act by 6 votes to 2, with 1 abstention. The bill now moves to the Judiciary Committee, with a hearing scheduled for Tuesday, April 7. Bills also moved through the Maryland and Minnesota legislatures. We learned that Tennessee will see a proposed bill this week as well, bringing the number of jurisdictions considering Death with Dignity this session to 25 (including District of Columbia).

These are the highlights of the most important developments in the movement around the United States from March 22 to March 28, 2015, with the corresponding media coverage.

California

The Senate Health Committee approved SB 128 with a 7 to 2 vote.

Maryland

The state Assembly considered the Richard E. Israel and Roger “Pip” Moyer Death With Dignity Act.

Minnesota

The bill introduced the previous week got some attention.

Elsewhere

Image by Jason McHuff.

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California Senate Health Committee Approves SB 128 – End of Life Option Act

Image: California Senate Health Committee hearing on SB 128

“Some years ago, my precious brother Jeff died a death I would not wish on anyone. Yesterday my spirits were lifted.

At the Senate Health Committee Hearing on SB 128 – California End of Life Option Act, I was privileged to witness the powerful testimony of families who, like my own, had to stand like giants in a moment after they were just ordinary people. Those brave people who provided testimony in support of SB 128 spoke for their loved ones. And they stood for us all.

It was a landmark day in California as the Senate Health Committee approved SB 128. This is one of several hurdles the bill faces, but California is poised to catch up to Oregon in this push for greater choice in how we meet end of life challenges.”

This first-hand account from the California Senate Health Committee Hearing on SB 128 – California End of Life Option Act comes from our supporter Kate P., a Sacramento, California, resident.

It was, indeed, an emotional hearing. Along with hundreds of others in attendance, I was moved by the powerful personal testimonies. These stories highlighted what we know from the Oregon experience: Death with Dignity as one of several end of life options provides peace of mind and control for the terminally ill while safeguarding against coercion for those who are vulnerable. SB 128 would allow patients who are mentally competent and have fewer than six months to live, as determined by two physicians, to obtain prescriptions for medication to end their lives in a humane and peaceful manner, while protecting the vulnerable with strict guidelines and procedures.

Yesterday afternoon the California Senate Health Committee approved the proposed Senate Bill 128 – California End of Life Option Act. I was pleased to be instrumental in working with both bill sponsors, State Senators Lois Wolk and William Monning, to craft the law.

You can help to make this bill become law:

  • Thank the bill sponsors. Call, email, or send a letter to SB 128 sponsors, Senators Monning – D-Carmel, and Wolk – D-Davis, in appreciation of their leadership on the issue.
  • Thank the Senators voting Aye. The bill moved out of this committee by a vote of 6 to 2 along party lines. Contact Senators Hernandez (D-LA/West Covina, Committee Chair), Hall (D-LA/South Bay), Mitchell (D-Culver City), and Roth (D-Riverside), particularly if you are in their district, to express your appreciation for their courageous vote.
  • Share your story. Heartfelt personal stories were a crucial part of the testimony in favor of the End of Life Option Act. Let us know how you got involved in the Death with Dignity movement or why you support California’s proposed legislation by completing this simple form.
  • Make a contribution. We remain very optimistic the law will pass, but for that to happen we need your support. It is thanks to you that we are able to do our work in promoting Death with Dignity laws in California and elsewhere. Your gift will go a long way in promoting SB 128 as it moves along through the legislative process. You can make the difference. Thank you.

The End of Life Option Act will next get a hearing in the Judiciary Committee on April 7. We’ll be there again, continuing to work with the bill sponsors to promote the bill’s passage.

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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 (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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Week 12/2015 in the Death with Dignity Movement

Last week was marked by a long and emotional hearing in Connecticut on HB 7015 – An Act Providing a Medical Option of Compassionate Aid in Dying for Terminally Ill Adults. A Death with Dignity bill was introduced in Minnesota as SF 1880 – Minnesota Compassionate Care Act; Senate Bill 128 – California End of Life Option Act got US Senator Dianne Feinstein’s endorsement; and a bill criminalizing physician-assisted dying passed in the Montana House, portending the possibility of a ban.

These are the highlights of the most important developments in the movement around the United States from March 15 to March 21, 2015, with the corresponding media coverage.

California

As California geared up to this week’s Senate Committee hearing on the End of Life Option Act, the bill gained an influential supporter.

Connecticut

Connecticut’s House hearing of the HB 7015 – An Act Providing a Medical Option of Compassionate Aid in Dying for Terminally Ill Adults saw hundreds of people provide emotional testimonies.

Nevada

Nevada Senators Parks and Kieckhefer introduced Patient Self-Determination Act.

Elsewhere

Image by weirdisnothing.

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Partnering with People of Nevada on Proposed Patient Self-Determination Act

We are proud to support Nevada Senators David Parks (D-Las Vegas) and Ben Kieckhefer (R-Carson City, Washoe) and the people of Nevada in proposing a Death with Dignity law to provide a peaceful and dignified death for those suffering from terminal illnesses. Senate Bill 336, the Nevada Patient Self-Determination Act, says that, in certain narrow circumstances, mentally competent terminally ill adults who are within the final six months of their lives will be allowed to peacefully end their lives. The Act provides strict safeguards, protects against coercion, and allows eligible terminally ill patients to spend their final days and moments at peace, surrounded by their family members and loved ones.

The Oregon Experience

“Twenty years ago last November, Oregon voters were the first to approve the Death with Dignity law after which the proposed Nevada legislation is modeled. The Oregon Death with Dignity Act has been implemented carefully and has helped to spur a national conversation about end-of-life care that will continue this year in Carson City,” said Peg Sandeen, Executive Director of the Death With Dignity National Center. “Our model legislation has been passed in Washington and Vermont, and those states are seeing the same careful implementation controlled by patients seeking to end their lives peacefully. This law has worked exactly as intended everywhere it has been adopted.”

The numerous safeguards in this law have worked well in Oregon for 18 years, in Washington for 7, and in Vermont for two. There have been no reports of coercion, failure, or misdeeds in any of these states. Far more people ask their doctor about the law than actually use it, but many find comfort knowing the law is available if their symptoms cannot be controlled. The legislation proposed by Senators Parks and Kieckhefer, together with their co-sponsors, provides peace of mind and control for the terminally ill while safeguarding against coercion for those who are vulnerable.

The Time Is Right for Nevada

“The Death with Dignity National Center is pleased to have assisted in drafting the proposed Nevada Patient Self-Determination Act. We will assist the Nevada efforts by providing our full political and strategic expertise from the successful campaigns in Oregon, Washington, and Vermont,” said Sandeen. “The time is right for Nevada to adopt this law. The Silver State has long been a leader in protecting individual rights, and it is thanks to this leadership that we are proud to join these efforts today.”

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Week 11/2015 in the Death with Dignity Movement

Maryland was in the spotlight of the Death with Dignity movement last week, with the Senate Judiciary Committee hearing drawing dozens of testimonies, including from our Executive Director, Peg Sandeen; our friend Dr. Peter Rasmussen, MD, coined an op-ed in the Baltimore Sun in support of the bill and Marylanders’ right to Death with Dignity as an end-of-life option.

The New York Times endorsed Death with Dignity as an end-of-life option for the terminally ill. Across the pond, beloved author and dying with dignity campaigner Terry Pratchett died.

These are the highlights of the most important developments in the movement around the United States from March 8 to March 14, 2015, with the corresponding media coverage.

California

California was getting ready for the March 25 Senate hearing of the End of Life Option Act.

Connecticut

Connecticut geared up to its Assembly hearing this week on the proposed physician-assisted dying bill.

Maryland

Maryland was abuzz with the House and Senate hearings on the Richard E. Israel and Roger “Pip” Moyer Death With Dignity Act.

Montana

Montana saw a rollercoaster in the House when a proposed bill outlawing physician-assisted dying first passed and eventually failed on a split vote.

Utah

Though the Utah Death with Dignity Act was tabled until next year, a discussion about the issue started in the state. A poll showed the majority of Utahns are in favor of such legislation.

Vermont

In Vermont, a bill passed in the Senate that removed the sunset provision from the state’s Death with Dignity bill, keeping safeguards intact.

Elsewhere

A couple of nice opinion pieces:

Image by Daniel Blume.

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