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.

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 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.

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.

“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.

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.

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.

All the recent legislative activity surrounding Death with Dignity shows Americans are ready for a meaningful conversation about how we die. Your support makes it possible for us to work with people throughout the US to advance these discussions.

Some highlights:

• Vermont: Our partners on the ground are mobilizing citizens to talk to their lawmakers about why these laws are needed. A Death with Dignity bill has already cleared the Senate, and moments ago, the House Human Services Committee voted to advance a bill with safeguards which emulates the time-tested Oregon Death with Dignity Act. The bill now moves to the House Judiciary Committee for consideration, and Judiciary has dedicated this week to hearing testimony on the bill.
• New Jersey: A bill which would lead to a voter referendum for a Death with Dignity law has been sent to the floor of the House for consideration.
• New Hampshire: The House advanced a bill to study Death with Dignity laws.

Read more about these & other states >

Stand with us as we make history and lead the way toward real and lasting healthcare policy reform to allow for safeguarded assisted dying. Your tax-deductible gift of $50, $100, or even $500 makes all the difference. Thank you.

Great news from Vermont today! After hearing testimony from various end-of-life care experts, advocates, and some opponents over the last two weeks, the Vermont House Human Services Committee decided to focus on bill language with safeguards modeled on the Oregon Death with Dignity legislation. All of us here at the Death with Dignity National Center applaud the Vermont House committee members on their decision and extend an enormous thank you to our partners, Patient Choices Vermont, for all of their hard work to get to this historic moment.

But let’s step back a moment, and get everyone caught up. Back in February, the Vermont Senate advanced Senate Bill 77 after drastically amending the language of the bill to remove the safeguards similar to the Oregon and Washington Death with Dignity Acts, and moved the bill to the state House for consideration. The bill was introduced and filed with the Vermont House Human Services Committee. Because the House Judiciary Committee is likely to be involved if Human Services decides to change the bill back to be more in line with the existing Death with Dignity laws, the two House Committees held joint hearings to gather testimony.

Last week, committee members heard from end-of-life care experts including George Eighmey, Anne Jackson, Harry Chen, and Diana Barnard. This week, the committees heard from advocates and proponents at a public hearing and continued listening to more end-of-life care experts such as Dr. Marcia Angell and people who are dying of terminal illnesses and want more end-of-life options like Ben Underhill.

This morning, the Human Services Committee began their work in earnest to determine whether they wanted to keep the Senate version of the bill or focus on bill language which would include extensive safeguards such as the ones found in the Oregon and Washington Death with Dignity Acts. They decided to focus on bill language with safeguards modeled on the Oregon law.

The bill still has a long road ahead of it; check back often for the latest news. You can also catch up on videos and audio files of the recent testimony in Vermont through Patient Choices Vermont’s website.

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

Last December, Compassion and Choices of Washington unveiled a new kind of advance directive for life planning while living with Alzheimer’s Disease and Dementia. This document is the first of its kind focused on these specific challenges. With a similar purpose as the living will, the Alzheimer’s and Dementia directive aims to have a person’s intentions known when the person isn’t in a place to speak for him or herself.

The Alzheimer’s directive is different from the usual advance health care directive. An advance health care directive is used to specify what medical actions should be undertaken if the patient is too ill or incapacitated to make those decisions. A typical question for those completing these documents is whether or not the patient wants aggressive medical treatment—such as a feeding tube or artificial ventilation—when the patient is dying or in a persistent vegetative state.

The Alzheimer’s directive doesn’t specify medical decisions, rather decisions which involve day-to-day choices. Robb Miller, executive director of Compassion and Choices of Washington, told me about the type of decisions covered by this new directive, “it’s more about the challenges of living with Alzheimer’s such as where are you going to live, how your care is going to be paid for, what to do with your pets, when to stop driving, what happens when you can no longer have intimate relations with your spouse or partner, those kinds of things, not medical issues.”

There were a number of factors which contributed to the creation of this directive. In 2003, Washington state enacted RCW 71.32, which allowed for the creation of Mental Health Advance Directives. This law inspired Seattle University School of Law Associate Professor Lisa Brodoff to think about a directive for Alzheimer’s and Dementia.

In 2010, Brodoff published a journal article in the Elder Law Journal entitled, “Planning For Alzheimer’s Disease with Mental Health Advance Directives”. Within the article, Brodoff describes the life changes that accompany the Alzheimer’s disease progression such as alterations to intimate relationships and the loss of driving abilities. She also described the practice of Medicaid divorces in which people divorce to protect assets due to incredibly expensive Alzheimer’s care. Brodoff concluded this article with a suggestion for a personal advance directive addressing these scenarios. Robb Miller read her article and was immediately interested in the specialized advance directive. Brodoff and Miller continued Brodoff’s work by coauthoring and creating this directive which is available to the public.

The directive provides opportunities for a person to state wishes about where he or she would like to be treated, who the preferred caregiver is, and who’s authorized to be a health care agent. The directive allows the patient to rank health care institutions in order of preference, and it even includes a space to discuss how one would like his/her pets to be cared for.

This Alzheimer’s directive can’t account for every care decision that’ll need to be made. To that end, Miller strongly suggests filling out a personal history and care values statement. This statement is a description of your history and values. In our conversation, Miller spoke about this process, “an important part of making the directive is expressing your religious beliefs or what’s really important to you so that people understand or at least have a sense of who you are.” This empowers caregivers to make better decisions based on more complete information and allows them to fill in the gaps when situations hadn’t been anticipated. Miller spoke of care being markedly better when caregivers had this added insight.

Another highlight of the Alzheimer’s and Dementia advance directive was the commitment to patient centered language. Even the instructions included the advice: “This is your document. When completed, it should express your wishes. Cross out sections, sentences, or words with which you don’t agree.” Miller and Brodoff created this directive to be empowering to those who’ve lost the ability to speak for themselves. Miller spoke about this approach: “One of the things this directive does so well is reinforce that the person making this document doesn’t want their wishes to be ignored, doesn’t want someone else’s judgment substituted for their own.”

No one can precisely predict the exact life changes that’ll occur during the course of a mental decline due to Alzheimer’s and Dementia. No one can predict the type of health care setting the person will need or exactly how quickly one will progress from the early stages of dementia to the late stages of incapacitation. Alzheimer’s disease presents a series of unknown questions, but this specialized advance directive combats this mystery. Miller summarized its usefulness, “there is just no downside to documenting your wishes. And there are many many downsides to being unprepared and not documenting your wishes… Making advanced directives whether it is medical directives or Alzheimer’s directives is a gift. It is a gift to your loved ones, it is gift to your caregivers, it is a gift to your family.”