Death with Dignity National Center

This Week in the Movement

Melissa Barber — Fri, 17 May 2013 22:14:43 +0000

Throughout the week, we keep people up-to-date with information about the Death with Dignity movement and other topics related to end-of-life care through Facebook and Twitter. Below are highlights from this week.

Efforts regarding Death with Dignity:

Top of the news this week: The Vermont House and Senate passed a Death with Dignity bill. The bill is now before Governor Shumlin, and he is scheduled to sign the bill into law on Monday at 2:00pm EST.
This historic news once again brought assisted death to the fore of people's attention. A few highlights:
- Programs such as RT's Breaking the Set asked Death with Dignity National Center board member George Eighmey about why the laws are written the way they are. (George's interview begins at the 2:55 minute mark.)
- For policy wonks: a Vermont newspaper broke down the Vermont bill's path during this legislative session.
- Vermont public radio interviewed two passionate advocates for the bill, president of Patient Choices Vermont Dick Walters and lobbyist Michael Sirotkin.
- Massachusetts public radio analyzed the efforts in Vermont.
- AgingCare looked at the nuts and bolts of Death with Dignity laws, and who exercises their rights allowed under these laws.
- Reuters, Associated Press, and Wall Street Journal stories about Vermont were picked up by news outlets the world over.
The Vermont lawmakers' actions were distinctly noticed this week in the UK, when Lord Falconer's assisted dying bill moved before Parliament.

Discussions about death, dying, and grieving:

"The latest figures show only 8.5 percent of hospice patients are black, 82.8 percent are white." How can we bridge this racial divide in how we die?
Dr. James Salwitz stated, "We are simply too busy to die."
But being too busy to think about and plan for death doesn't help us die better.
A couple studies have come out recently which found the majority of patients want to know their prognosis if they're dying, but some don't.

Life's too short:

Ever been apartment hunting in NYC? What's the craziest apartment you've seen?

Vermont House and Senate Pass Death with Dignity

Melissa Barber — Tue, 14 May 2013 01:00:00 +0000

Show your support; share this image with your friends.

Vermont made history today!

The Vermont House and Senate both approved the same version of a law based on Oregon's model Death with Dignity legislation, and the bill now heads to the governor's desk for signature. In the past, Governor Shumlin has indicated he'll sign the bill if it reaches his desk. With the Governor's signature, Vermont becomes the third state with an assisted dying law and the first state to enact this law through a legislative process. A historic achievement.

This achievement comes after over 10 years of diligent work by our partners, Patient Choices Vermont. In August of 2002, dedicated volunteer Dick Walters brought together a group of Vermonters who wanted their state to allow the same rights Oregonians had because of the groundbreaking Death with Dignity Act. Knowing he needed to consult experts in passing this sort of law, he contacted the only organization which had successfully written and passed such a law: Oregon Death with Dignity, the predecessor of the Death with Dignity National Center.

Right from the beginning, the Death with Dignity National Center formed a strong partnership with Dick Walters and his group, Patient Choices Vermont, to advance legislation allowing for safeguarded assisted death, and we've been there every step of the way. Over the years, we've joined our credibility, knowledge, and connections to end-of-life care experts with Patient Choices' dedication to Death with Dignity policy reform in their state.

Beyond our countless hours of work lending political experience to help Patient Choices, we connected them to people who've seen Oregon's law in action through their work in hospice and palliative care. One such expert is Ann Jackson, former Executive Director of the Oregon Hospice Association. Reflecting back on her most recent trips to Vermont, Ann said:

What was most different—and gratifying—about Vermont's experience was that the House and Senate, as whole bodies, were able to discuss or debate the issue. The bills did not die in committee. What was most interesting was the quality of the discussions in committees—thoughtful and looking for good and truthful information.

The House and Senate debates were more about innuendo and lacked depth. This is not criticism—it is expected that committees seek information and learn and teach. What was most frustrating is that Oregon's credibility is questioned, even when data and independent studies corroborate state findings. The same dire predictions are being made now that were made in Oregon in 1994 and 1997—and proven wrong—and in every state and country that has considered physician-assisted dying before and after.

But today, facts and data won. Oregon's law now has 15 years of data demonstrating the groundbreaking Death with Dignity Act written by our founding board member Eli Stutsman is no longer an experiment or test case; it now serves as the model for end-of-life care policy reform. All of us here at the Death with Dignity National Center applaud Vermont lawmakers and Patient Choices Vermont for being truly dedicated to patient-centered care and moving one step closer to allowing all Vermonters to determine how to live out their final days when death draws near.

The bill now heads to Governor Shumlin's desk for final approval. With his signature, Vermont will take the historic step of becoming the first state to enact Death with Dignity through a legislative process.

This Week in the Movement

Melissa Barber — Fri, 10 May 2013 21:05:46 +0000

VT Senator Ayer, photo care of Patient Choices

Efforts regarding Death with Dignity:

On Wednesday, the Vermont Senate approved a Death with Dignity bill. The bill now faces two more hurdles: the House needs to concur with the Senate version and the Governor needs to sign it. The House vote is slated to take place tomorrow.
Vermont Representative Kate Webb stated why she supports Death with Dignity in the Shelburne News.
In an interview with the New York Daily News, Death with Dignity National Center executive director Peg Sandeen talked about the often hidden source of opposition to Death with Dignity laws.
The Huffington Post picked up Peg's interview as well.
Vermont's historic efforts attracted the notice of USA Today.

Discussions about death, dying, and grieving:

NPR's Talk of the Nation interviewed two prominent doctors about their peers' difficulty talking about death.
The Atlantic pointed out a study which found doctors' word choices affect end-of-life decisions.
Paula Span with The New York Times wrote about a study which found low-risk skin cancers are often treated too aggressively in elderly.
Lisa Bonchek Adams has stage IV metastatic breast cancer, and her mother shared her perspective on reading Lisa's blog posts about living with cancer.

Life's too short:

I'm a fan of almost anything cat-related (and for that matter, sushi-related); mixing them together is just odd.
Some might even say I'm obsessed with cats, but how do cats know when they're too obsessed with their people?
We're based in Portland, Oregon where programmers work to make it easier to track our public transportation.
If you're going to text and walk, be sure to find yourself a seeing eye person.

For Immediate Release: Vermont Senate Passes Amended Death with Dignity Bill

Melissa Barber — Thu, 09 May 2013 18:27:49 +0000

Contact: Peg Sandeen, MSW, Executive Director
              Death with Dignity National Center
              503-228-4415
              psandeen@deathwithdignity.org

The Vermont legislature is in a position to enact historic legislation in the next few days. Should the Vermont House vote to concur with a Senate amendment passed on Wednesday, May 8, Vermont will become the first state in the nation to pass a Death with Dignity law through the legislative process.

The bill has had a difficult journey to passage and faces two more hurdles: the above-mentioned House concurrence and signature by the Governor. In past statements, Vermont Governor Peter Shumlin has promised to sign carefully-safeguarded Death with Dignity legislation, and he issued the following statement today:

I understand the deep convictions held by Vermonters on all sides of this extraordinarily personal issue. But I also know how important it is for those who face terminal illness and tremendous pain to have this choice, in conjunction with their physicians and loved ones, in the final days of their lives. I am grateful for the Legislature's continued hard work on this difficult issue.

Legislative committees have heard days of emotional testimony from opponents and supporters, including Ann Jackson, former Executive Director of the Oregon Hospice Association and George Eighmey, who helped terminally ill Oregonians navigate the Oregon's Death with Dignity law for 12 years. Lawmakers themselves participated in days of debate and several rounds of voting. The House concurrence vote, likely to occur in the next few days, will be the bill's second trip to the House this year.

In fact, legislators have been exploring this issue since 2003 in the Green Mountain State, when a bill entitled the Vermont Death with Dignity Act was introduced by 38 sponsors in the House and 8 members in the Senate. According to Peg Sandeen, Executive Director of the Death with Dignity National Center, "We are so pleased that legislators in Vermont have taken another bold step toward expanding end-of-life options for terminally ill Vermonters. We have been committed to policy reform efforts in Vermont for over 10 years, and we are proud to partner with the dedicated individuals involved in Patient Choices Vermont."

As with any legislation, there are no guarantees the House will support the Senate's version of the proposed law. Sandeen added, "While there are no promises nor guarantees when it comes to the legislative process, our research shows Vermont has led the nation on improving indoor air quality, marriage equality, prescription drug access and Medicaid reform, we believe Vermont will take the lead on end-of-life care reform, also." Should the Vermont House concur with the Senate version of the bill, Vermont will become the third state in the US, following Oregon and Washington, with a carefully-safeguarded law allowing terminally ill and mentally competent adults to hasten their deaths.

This Week in the Movement

Melissa Barber — Fri, 03 May 2013 22:19:55 +0000

VT House of Representatives, photo by PCV

Efforts regarding Death with Dignity:

The Vermont House of Representatives passed a Death with Dignity bill! The bill still has a ways to go, and VTDigger explored the different paths it may take.
Death with Dignity National Center executive director Peg Sandeen was interviewed by The Washington Times. The interview was published over two days: part 1 and part 2.
A UK poll found overwhelming support for Death with Dignity among people of most religious faiths. Of those supporting a change in the law, 82% agreed that an "individual has the right to choose when and how to die".
A poll in Canada found the majority of Albertans "felt dying adults should have the right to end their life early."
Cate Faehrmann introduced an assisted death bill for consideration by the Parliament of New South Wales in Australia. Watch the video of her speech to Parliament to learn why. Greg Piper explained why he supports changing the laws around assisted death in Australia.

Discussions about death, dying, and grieving:

A review of 210 studies found most people truly do want to die in the comfort of their own homes.
Social media in action! This week, John Hennessy lamented the absence of early palliative care in the new guidelines issued by National Comprehensive Cancer Network (NCCN), and shortly after the post went live a representative from NCCN responded the staff would prepare a modified version of the guidelines to incorporate his suggestion.
The National Hospice and Palliative Care Organization launched it's new online resource, eHospiceUSA, to help healthcare professionals.
A study looked at how often prognosis information was shared with patients diagnosed with cancer, and found "benefits associated with realistic awareness included enhanced control and end-of-life planning, which was seen to engender hope."
Oncology Nurse Advisor called for better end-of-life tools to help nurses care for terminally ill patients.

Life's too short:

Do you have a pint-sized panther in your life?

Vermont House Passes Death with Dignity

Melissa Barber — Wed, 01 May 2013 21:50:26 +0000

VT Statehouse, photo by Mark Danielson on flickr

Vermont took another step toward allowing terminally ill people to decide the manner and timing of their deaths through a safeguarded process. Today, the Vermont House approved a bill emulating the time-tested Oregon and Washington Death with Dignity Acts by a vote of 81-64. The path has been a long one, and it still has a ways to go before a final version would be presented to Governor Shumlin.

Since its introduction to the full Senate for debate earlier this year, the proposed bill has taken a meandering path. In the Senate, the bill was drastically amended before being approved and sent to the state House. In the House, the Senate bill was introduced and referred to the House Human Services Committee for consideration.

After listening to hours of expert testimony, the committee voted to restore the original bill's safeguards, bringing it more in line with the existing Death with Dignity laws. Because of the changes to the structure of the bill, the House Judiciary Committee had to go through it with a fine tooth comb to make sure the proposed bill would work with existing Vermont laws.

At the end of last week, the Judiciary Committee had completed its inspection, and approved the bill for consideration by the full House. After a lively floor debate over the course of two days, the House advanced a bill today which differs from the Senate bill. Before a bill can be sent to the Governor, the Senate either needs to agree to the House's amended bill or request a Committee of Conference made up of House and Senate members to find common ground between the two versions. If a Committee of Conference is assembled, the version they come up with would need to be approved by both the Senate and the House before moving to the Governor's desk.

No doubt about it, the Death with Dignity movement is standing on the precipice of monumental change, and we'll be there every step of the way until all terminally ill Americans have the right to a dignified death. Thank you for your support.

Expert Analysis of Advance Directives

Melissa Barber — Mon, 29 Apr 2013 19:06:13 +0000

"Ask DDNC" is a new column created to serve as a resource for you. Today, we'll focus on advance directives. We consulted Ann Jackson, MBA, for her advice. Ann Jackson is former director of the Oregon Hospice Association and now consults about end-of-life issues and options.

Every state has an official advance directive and is appropriate for all capable adults, regardless of health status at the time it's completed. Its purpose is to protect your right to refuse medical treatment you don't want, or request treatment you do want if or when you aren't able to make such decisions yourself.

Many people aren't aware that, without an advance directive, everything will be done to preserve life—even when it's not likely CPR or other life-sustaining treatments will be successful. In this column, I'll use Oregon's as an example. The Oregon advance directive is straightforward and relatively easy to complete. You can complete Part B, Part C, or both, depending on your advance-planning needs. You must complete Part D and your health care representative, if you appoint one, must complete Part E—Part D is for your signature and the signatures of your witnesses, and Part E is to be signed by your health care representative accepting the appointment.

Part B allows you to appoint a health care representative to make decisions about your medical care, including life support, if you're unable to speak for yourself. I consider Part B the more important—and critical, if you should step off the curb tomorrow into the path of the proverbial bus. You should choose your health care representative carefully to ensure he or she will respect your wishes in making medical decisions on your behalf.

It's also important to complete Part C so your health care representative and your health care professionals haven't only discussed your wishes with you, but have your preferences in writing. Part C allows you to document your future wishes—what medical and life-sustaining treatments you'd want if you're unable to make your own medical decisions. You can make a general instruction for all situations or specific instructions if "you are close to death, permanently unconscious, have an advanced progressive illness, or if life support would cause you extraordinary suffering." In each situation, you can choose to have or not have tube feeding or life support or accept the recommendation of your physician. You can also document additional conditions or instructions.

Discuss your wishes concerning medical treatment with your health care representative and doctors, initially and often, especially if your health or preferences change. Complete a new advance directive, as needed. Consider a Physician Order for Life Sustaining Treatment (POLST) if your health deteriorates to convert your wishes into doctor orders.

Do not put your original signed advance directive in a safe deposit box! Keep it accessible. Make copies for your health care representative, your doctors, family and close friends, and place in your medical records. Remember you can always revoke your advance directive and speak on your own behalf.

Help us create the next "Ask DDNC" column by telling us what questions you have in the comments section below.

POLST and How They Work with Advance Directives

Melissa Barber — Mon, 29 Apr 2013 18:16:50 +0000

Image care of the POLST website

This blog post is the fourth in a series of guest posts by Arashi about end-of-life care planning and documentation in honor of National Healthcare Decisions Day.

POLST forms are another type of end of life planning tool. POLST stands for Physician Orders for Life-Sustaining Treatment. They're also known as; medical orders on life-sustaining treatment (MOLST), medical orders on scope of treatment (MOST), or physician's orders on scope of treatment (POST). The first POLST program was developed in Oregon in 1991 to create a standardized, easily recognizable, portable document which is designed to be transferable and actionable throughout the entire medical community.

POLST differs from advance directives in a number of ways. When one fills out an advanced directive, he or she is considering end-of-life choices regarding a myriad of future treatments. For example, if a person went into a persistent vegetative state with little to no hope of recovery would that person would want life sustaining technologies? An advance directive could be filled out at any time by any person independent of his/her current state of health. A POLST form is intended to be used by those who are seriously ill and are considering specific options regarding life support. A POLST form is started with a conversation between patient and physician. An advance directive should have a clear statement of general preferences while the POLST form is selecting from a set of choices. An advance directive generally requires some interpretation of preferences but a POLST form is intended to be an actionable order requiring no interpretation if or when the existent circumstances require it.

The POLST form was created to remedy some of the disadvantages of the advance directives. Advance directives do a good job of getting a general sense of what a person would want in end-of-life scenarios but often aren't specific enough. They require a treating physician to translate intentions into orders. If the language of the advance directive is too ambiguous, the patient's loved ones are still in the position of "deciding in the dark" what the patient really wanted. POLST forms also evolve with life sustaining technologies ensuring the patient is up-to-date on exactly what life support choices are being employed.

One advantage of advance directives is they can be done without the help of a lawyer or physician and they're still able to be used to guide patient care. People can download an advance directive online and fill it out in a matter of hours. The disadvantage to this is the paperwork is with the patient when it should be shared with the medical professionals. POLST forms are available at doctors' offices, completed with the help of a physician, and are created with the intent of going into the patient's chart. They're standardized and easily recognizable and designed to be transferable throughout different medical facilities.

POLST orders and advance directives are designed to work with each other. Advance directives should be considered general documentation of end-of-life care wishes while POLST orders are specific instances of physician's orders. Everyone should have an advance directive written out—no matter how young or old or sick or healthy—they're a "just in case" coverage of intentions. If a person is in a position where he or she has a prognosis of a year or less to live, having a POLST form is recommended.

POLST orders should be considered a second step to advance directives. POLST forms are a way to take one's wishes from his or her advance directive and set them down in an unambiguous and concrete manner which is easily understood and applicable when needed. Research has shown the use of POLST forms results in higher levels of compliance from medical professionals. From physicians to EMTs to hospice care workers, most healthcare professionals find more accuracy of end-of-life preferences when the patient has a completed POLST order. And patients are more likely to receive the end-of-life treatments they desire when they have a POLST form.

Board Member Spotlight: Betty Rollin

Melissa Barber — Fri, 26 Apr 2013 19:25:55 +0000

Betty Rollin

We've spotlighted several of our staff members. Today, we would like to shine the light on one of our board members, Betty Rollin.

Betty Rollin is a TV correspondent, accomplished author, and sought-after speaker. A former correspondent for NBC News, her special reports for Nightly News included a series on the Native Americans of Pine Ridge, South Dakota, which won both the duPont and Emmy awards. She now contributes reports for PBS' Religion and Ethics Newsweekly.

Rollin is the author of seven books, including First, You Cry, a moving story—the first of its kind—about her breast cancer and mastectomy. Published in 1976 and re-published in 2000 in honor of the author's 25th "cancer anniversary", it received wide critical acclaim and was made into a television movie starring Mary Tyler Moore as Ms. Rollin.

Her bestseller Last Wish, published in 1985 and republished in 1998 recounts the story of her mother's request for help in dying and
began for her what has been a 20-year involvement in the Death with Dignity movement. One critic called it "a document of personal compassion and public importance." The book has been published in 18 foreign countries and was made into a TV movie, which aired on ABC in 1992, starring Patty Duke and Maureen Stapleton.

Her most recent book, published by Random House is Here's the Bright Side: of Failure, Fear, Cancer, Divorce and other Bum Raps.

Rollin first joined NBC in 1972 as a reporter for the news magazine, Chronolog and during 1972 she was the on-air theater critic for WNBC-TV, New York. She later created and anchored a series of NBC News' special programs for and about women titled Women Like Us. In January, 1973, she was named a correspondent for NBC News. In this position, she reported on human-interest stories, which remain her main focus as a journalist. In 1982, she became a contributing correspondent for ABC News Nightline. She left that position to write Last Wish and returned to NBC News in 1984.

Prior to her television career, Betty Rollin was an associate feature editor and staff writer for Vogue magazine. Following that, she became a senior editor for Look magazine, where she remained until the publication was discontinued in 1971. She has contributed articles to many national magazines, including The New York Times where she was also a Hers columnist.

A native New Yorker, Rollin is a graduate of Fieldston Ethical Culture School in Riverdale, NY and Sarah Lawrence College. She and her husband, Dr. Harold M. Edwards, a mathematician, live in Manhattan.

A Social Worker's Role at End of Life

Melissa Barber — Wed, 24 Apr 2013 18:32:12 +0000

Kevin Kozin, MTS, LICSW

Kevin Kozin, MTS, LICSW, is a clinical social worker and therapist and formerly worked as a hospice social worker. He's currently a board member of the National Association of Social Workers in Massachusetts and serves as the Chair of the Mental Health and Substance Abuse Committee. He works with adolescents, adults, couples, and families through psychotherapy and grief counseling, which lead to healing results.

The New England Journal of Medicine published an article this April titled, "Implementing a Death with Dignity Program at a Comprehensive Cancer Center". This well-written article takes a candid look at the demographics and experience of a particular cancer center in Washington state, where the Death with Dignity Act has been in effect since March, 2009. Death with Dignity refers to the Washington and Oregon statutes which allow individuals who have six months or fewer to live (as determined by two physicians) and have the capacity to make medical decisions the option to request prescribed medication which allows for a peaceful and painless death.

The article's conclusion states, "Overall, our Death with Dignity program has been well accepted by patients and clinicians." As a practicing clinical social worker and former hospice social worker, this comes as no surprise to me. The National Association of Social Workers in Washington continues to be a strong proponent of the Death with Dignity law Washington passed in 2008. As a board member and Chair of the Mental Health and Substance Abuse Committee of the National Association of Social Workers in Massachusetts, I know our chapter also worked in support of legislation through a ballot initiative here and the initiative lost by less than 1%. The ballot measure was modeled on the assisted dying laws in place in Oregon and Washington. Why would our organization of social workers support this legislation so enthusiastically? Because social workers stand for giving people—especially the dis-empowered—as much self-determination as possible.

Perhaps one element of this New England Journal of Medicine article which was highly edifying to me is the role of the social workers at the Seattle Cancer Care Alliance. In practice, a social worker is assigned to each individual who's considering requesting the medication allowed under the Death with Dignity Act. The social workers' role, as advocate, is to assist the individuals in understanding their options as well as providing a safeguard to ensure decisional capacity, screening out clinical depression and anxiety, and coordinating across multiple disciplines. The social workers coordinate with family, friends, pharmacists, physicians, care staff, attorneys, insurance companies, and anyone involved in the process to help the individual make a clear and thoughtful decision. The role of a hospice social worker in Massachusetts is very similar in that we're constantly looking to empower those who are dying with whatever resources are available to them and enable them to make their own decisions, when possible. Hospice social workers are experts in care coordination and hearing all of the various stakeholders in the care of the dying individual, making sure all voices are heard, and ensuring the dying individual's choices are respected.

In reading "Implementing a Death with Dignity Program at a Comprehensive Cancer Center" in the New England Journal of Medicine, I'm once again reassured the small percentage of dying individuals in Washington who qualify for assisted death are getting excellent care, and social workers are playing a strong role in ensuring these individuals' choices are respected. I look forward to a greater understanding of Death with Dignity throughout the United States—one which isn't based on fear but on compassion—and allows for more options and self-determination for those at the end of their lives.