So You Want to Pass a Death with Dignity Law in Your State

.

The number one constituent question we get at the National Center is, “what do I need to do to pass a Death with Dignity law in my state?” The answer is never easy because enacting a Death with Dignity law through the legislative process or ballot initiative is a complex, time-intensive, and expensive endeavor.

In a legislative environment, lawmakers are afraid of legislation focused on death even though repeated polls show a majority of Americans support Death with Dignity laws. Ballot initiatives are costly and time-consuming, requiring years of background work and the engagement of expensive professional political advisors nearly every step of the way.

The unfortunate reality is, while there’s a lot of activity and momentum in the New England region, not every state is ready to move forward immediately with Death with Dignity policy reform.

There are, however, lots of things you can do in your own state to jumpstart momentum and engage others in your request to push for reform, and I’m writing a five-part blog post about different ways to begin the process of legislative engagement in your state. Today’s post is focused on identifying allies because one thing is certain: you cannot do this alone.

Before you start, you need to understand your own commitment, including time and resource restraints. To effectively engage legislators, you may need to make a two to three year commitment of at least five hours a week. That’s a big investment of your time! Asking yourself whether you want to make that sort of commitment is important, because you’ll be asking others to join you. If you’re not willing, nor able, to make a commitment of that magnitude, there are other things you can do. Making the decision to go forward as a catalyst for statewide reform should be made with much deliberation and consultation with your family and friends.

If you really want to work on pushing Death with Dignity policy reform into the public debate, you’ll need a group of allies who share your passion. Realistically, you’ll need five or six people willing to invest approximately ten hours a month in volunteer time with the issue. To find such dedicated people—those who will become your “inner circle” of confidantes—you may need to approach 25-30 (or even more) potential volunteers.

This process may seem daunting, but you’ll repeat it over and over again throughout the time you’re engaged with the issue. In politics, when you don’t have big money, you have to have people…and our movement is all about people. It’ll get easier the more you do it. And, there are two wonderful things you’ll uncover: there’s more support in your community for Death with Dignity than you realize and people have the most amazing (and sometimes, tragic) stories to share.

For the most part, you’ll want to have individual meetings with potential volunteers. In these earliest of days, public meetings are not your friend. Ask five friends to tea; ask another five to join you for happy hour. Talk to five people at your church or synagogue, on your bowling league, or at your fitness club. Listen to their stories, and see what happens. You’ll find an ally willing to do this work with you, and then another.

Drop me an email and let me know your progress, and enjoy the stories.

Next up: Engaging Allies and Learning the Issue

View full post on Death with Dignity National Center



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.

View full post on Death with Dignity National Center

Oregon’s 2013 Death with Dignity Report

Every year, a small number of Oregonians exercise their rights allowed under the Death with Dignity Act. One of the people who requested the medication was Ben Wald. In 2006, he was diagnosed with colon cancer. He underwent treatment, and went back to enjoying the retired life until the cancer returned and metastasized to his lungs in 2011.

He sought treatment, but the cancer didn’t respond and instead advanced to his bones. He enrolled in hospice, and on April 3rd, 2012, he decided to also explore his end-of-life options allowed under Oregon’s Death with Dignity Act. In an interview with the Corvallis Gazette Times, Ben’s wife, Pam, recalled, “Once he learned that he was going to be given the choice to end his life, he relaxed.”

Just by having the option of Death with Dignity, a person regains control over a terminal illness at a time when their illness is quickly stripping away options and control. Though rarely used, the option of Death with Dignity provides comfort to countless individuals who know they have options at the end of their lives.

Each year, the Oregon Health Authority issues an annual report which sheds a light on the small group of people who pursue this option.

Some quick facts about the usage of Oregon’s law in 2013:

  • 71 people hastened their deaths under the Oregon law.
  • This accounts for 0.2% of all deaths in Oregon.
  • The top three concerns people expressed to their doctors when requesting the medication were centered around wanting control over their final days.

The numbers also show people who request the medication under Oregon’s law receive high quality end-of-life care:

  • 87% of the people who died using Oregon’s law in 2013 were enrolled in hospice. (By way of comparison, the National Hospice and Palliative Care Organization estimates 45% of deaths in the US are under the care of hospice.)
  • Over 97% of the people who used the law died at home.

The numbers point out the bare facts around these small number of deaths, but they don’t tell the whole story. Simply having the option is what’s important. Many terminally ill Oregonians wouldn’t consider asking their doctors for the prescription. For Ben and his family, however, having this option was a gift and a blessing.

A month after beginning the medication request process, Ben and Pam invited 10 of their dearest friends to join them in celebrating a life well lived and be a comfort as Ben drifted off to a peaceful death.

View full post on Death with Dignity National Center

NM Judge Rules in Favor of Death with Dignity

Yesterday, a New Mexico court ruled terminally ill, mentally competent residents have a constitutional right to request prescribed medication to shorten their suffering. In her ruling, Second Judicial District Judge Nan Nash stated:

If decisions made in the shadow of one’s imminent death regarding how they and their loved ones will face that death are not fundamental and at the core of these constitutional guarantees, then what decisions are? As recognized by the United States Supreme Court in Cruzan “[t]he choice between life and death is a deeply personal decision of obvious and overwhelming finality.”

The case, Morris v. Brandenberg was brought before the court on behalf of two doctors, Dr. Katherine Morris and Dr. Aroop Mangalik, as well as a woman diagnosed with advanced uterine cancer, Aja Riggs. According to the Associated Press:

Aja Riggs has undergone aggressive radiation and chemotherapy treatment for advanced uterine cancer. The 49-year-old Santa Fe resident remembers the feeling of her skin burning, all the medication, the nausea and the fatigue so immense that even talking sapped too much energy…She said she wanted to live but also wanted the option of ending her life with dignity if her condition worsened.

Judge Nash also ruled doctors who provide fatal prescriptions to their terminally ill patients can’t be prosecuted under the state’s assisted suicide law. The New Mexico Psychological Association filed an amicus brief in the case arguing assisted suicide is fundamentally different from assisting a dying patient in finding dignity in an already impending exit from this world.

One of the plaintiffs, Dr. Morris, moved to New Mexico several years ago after practicing in Oregon. Her professional experience as a physician prescribing under Oregon’s Death with Dignity Act is documented in the film How to Die in Oregon. Underscoring why being able to honor a dying patient’s wish is critical to her she stated:

Surgical oncologists like me know we can’t save every cancer patient. It’s important that we have every tool in the toolbox to respond when dying patients who are suffering request options to die with dignity.

New Mexico’s Attorney General’s Office is studying the decision. If affirmed, the decision would apply to the whole state.

View full post on Death with Dignity National Center

Death with Dignity Supporters Have Stories to Tell

Everyday, I chat with people who want to help us advocate for the Death with Dignity laws we promote. Supporters come to us from all different groups and all 50 states, and they’re some of the most dedicated you’ll find. The reason people feel so strongly about these laws is usually because of a personal experience—either through facing a serious illness like Penny has or because they were bedside when a loved one died.

Unfortunately, most who’ve found us after witnessing a death did so because the dying person suffered terribly and pleaded for assistance in dying. This was the case for our newest board member, George Eighmey and long-time supporter Dee, who’s committed to our long-term stability and has included us in her will.

These experiences are contrasted with people in Oregon, Vermont or Washington who shared the peace of mind their loved ones experienced because of the Death with Dignity laws in these states. Some I had the honor of working with to help them navigate the details of the law like Jason and his family in Vermont. Others are like Becky who contacted us after her sister’s death to thank us for the Death with Dignity Act in Washington.

Often these conversations are just the start of a long relationship with a supporter, and many continue to volunteer and support us long after witnessing the peaceful deaths of their friends or family members. One such advocate, Nora, generously shares her experiences with Oregon’s Death with Dignity Act often, and has written several times about her husband who was one of the first in Oregon to request the medication. Nora has a gift for distilling all the words I communicate on a daily basis into a succinct and meaningful statement about why Death with Dignity laws should be in every state:

To provide real dignity in dying, we must unconditionally respect the unique and inherent personhood of the person at the center of the process.

Some advocates I don’t have the honor of speaking with directly. Like many when a message goes viral, I come across their clear pleas for more end-of-life options on one online medium or another. In 2013, two prominent figures recorded their support for Death with Dignity laws. Eight days before he died, Dr. Donald Low, who’s best known for being the calm public voice which soothed Canadians through the SARS outbreak of 2003, recorded a message to Canadian lawmakers asking them to change their nation’s laws and allow people to determine what’s best for themselves in their final days.

Before Dr. Low’s video, groundbreaking theoretical physicist Stephen Hawking very clearly articulated his support for laws allowing for safeguarded physician-assisted dying. Dr. Hawking isn’t the only person living with a disability who feels misrepresented by some groups who oppose Death with Dignity laws. One such person is Joan Tollifson, a strong supporter of Death with Dignity laws and long-time disability rights activist. She’s fed up with being told how she should feel about end-of-life options:

Obviously, I do not want to exterminate people with disabilities! I just want people like myself to be free to make up our own minds. I’m tired of the religious right trying to control my body and run my life, and the heartbreak of having the disability rights movement now in their corner is beyond words.

These are just some of the strong personal stories for why people come to support us and the Death with Dignity laws we promote. You can read more in the Personal Stories section of our blog.

How about you; what experience brought you to the Death with Dignity movement? Please tell us in the comments section below.

View full post on Death with Dignity National Center

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.

View full post on Death with Dignity National Center

Death with Dignity Improves Hospice Awareness

Walking a labyrinth as part of hospice care
Walking a labyrinth as part of hospice care. Photo care of Paul Kapteyn

After an event to celebrate and remember people who’ve died at JHC Hospice in Worcester, Rev. John G. Pastor, reflected on changes he’s seen in Massachusetts hospice care since the narrow defeat of the proposed Death with Dignity initiative in 2012. In an interview with The Worcester Telegram & Gazette, he remarked the most notable change has been more and more people are talking about hospice in a positive light:

It’s good to have increased conversations, and even debates, about honoring wishes at end of life. Even though [the initiative] failed, it brought to light and affirmed our work in so many ways. There is really an awareness.

Others at the hospice event, including some who opposed the bill, also acknowledged the Death with Dignity initiative opened up the public discussion about hospice care. JHC Hospice Director Ann Marie LeBoeuf noted, “In our society, people are not comfortable talking about death. It is dark. But now that it was a public issue, people do speak of it and talk about what they want.”

This has also been the case in states with Death with Dignity laws (Oregon, Washington, and just this year, Vermont). Prior to Oregon voters approving our model legislation, the Death with Dignity Act, in 1994 many hospice workers expressed concern the mere existence of the law would encourage people to request the medication rather than pursue other end-of-life options like hospice and palliative care. Unfortunately, this false dichotomy persists even today in states without Death with Dignity laws. In reality, shortly after the Oregon law went into effect in 1997, many doctors and other healthcare workers found conversations about end-of-life care improved.

Since the passage of Oregon’s law, the state has become a model for many aspects of end-of-life care, and Oregonians tend to be more knowledgeable about hospice and palliative care than people in other areas of the country. The same has happened since the passage of Washington’s Death with Dignity Act in 2008. According to a poll conducted by National Journal and The Regence Foundation, overall knowledge of end-of-life options like hospice and palliative care is higher in states with Death with Dignity laws.

Not only do Death with Dignity laws provide a safeguarded framework to request the prescribed medication, they stipulate when a person initiates this conversation, the discussion must also include all feasible options including hospice and palliative care. People who exercised their rights under the Oregon and Washington Death with Dignity Acts utilized hospice at a higher rate than the national average. In 2012, 97% of people who requested the medication allowed under Oregon’s law and 92% of Washingtonians were also enrolled in hospice.

As it turns out, the mere existence of the law creates a possibility for doctors and terminally ill patients to have an open and legal conversation about assisted death and all end-of-life options. This is what we strive for by promoting Death with Dignity laws based on our model legislation, the Oregon Death with Dignity Act. Our aim is twofold: to provide an option for dying individuals and to stimulate nationwide improvements in end-of-life care. Together we can make the difference.

View full post on Death with Dignity National Center

A Growing Conversation About Death with Dignity

For years, many state lawmakers have been working quietly to put forward Death with Dignity legislation, and with the recent shift in the national conversation around end-of-life healthcare policy reform, some politicians are taking a more vocal stance. Within the last few years, Vermont Governor Peter Shumlin made Death with Dignity part of his campaign platform; New Jersey Assemblyman John Burzichelli introduced and is championing his proposed Death with Dignity legislation; and Pennsylvania State Senator Daylin Leach has begun being more vocal in his support for the Death with Dignity bill he proposed.

His bill emulates our model legislation, the Oregon Death with Dignity Act. In an editorial published this week, Senator Leach outlined why Pennsylvania needs to follow in the footsteps of Oregon, Washington, and Vermont. He pointed out how Americans want and seek out options in all facets of their lives:

The desire for choice seems to be in America’s DNA. As a people, we demand a cornucopia of choices in virtually every aspect of our lives. We demand everything from 31 flavors to 800 channels. We go to The Cheesecake Factory to choose between 300 menu items, in a mall with 400 stores…Yet we have, for the most part, passively accepted the denial of any choice in the one area of life where it perhaps means the most. In most places in this country, we can not choose how we want our lives to end.

He went on to explain specific provisions of the proposed Pennsylvania legislation:

The bill requires that any person wanting the medication fill out and sign a notarized form, indicating that they themselves were making the request. They would then need two separate doctors, a treating physician, and a non-treating independent physician to attest that the patient has a terminal disease and has less than 6 months to live. Only then would the medicine be disbursed.

Senator Leach addressed opponent’s false assertions which we’ve heard since Oregonians voted on the groundbreaking Death with Dignity Act in 1994; he pointed out the proposed law would only be an option for people who are clearly dying as a result of a terminal illness. He also reflected on the experience of people who’ve exercised their rights under other states’ Death with Dignity laws that “just having the medicine, and the options it brings, is enough comfort to enable them to keep going.”

Poignantly, he ends his op-ed by summing up the true aim of Death with Dignity laws: patient centered care.

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.

Senator Leach’s editorial is part of the growing public demand for laws to allow terminally ill people to decide what’s best for themselves in their final days, and it’s refreshing to see more and more politicians calling on their fellow lawmakers to stand up and respect the will of the people.

View full post on Death with Dignity National Center

Dr. Donald Low: Legalize Death with Dignity

Maureen Taylor and Dr. Donald Low
Maureen Taylor and Dr. Donald Low

Eight days before he died of terminal brain cancer, prominent Canadian physician Donald Low recorded a video which stirred up a fair amount of controversy. Throughout his career, Dr. Low wasn’t shy about speaking publicly, and he’s best known for being the calm public voice to soothe Canadians through the SARS outbreak of 2003.

During the most controversial section of the video, he discussed his desire to live in a place with a carefully crafted Death with Dignity law and appealed for Canadian lawmakers to take up a serious and open conversation about physician-assisted dying. As an internist, he knew when doctors discovered his brain stem tumor in February, his prognosis wasn’t good.

Knowing he was facing the end of his life wasn’t his foremost concern. What bothered him was knowing the likely challenges he’d experience before he died, “I’m worried about how it’s going to end. I know it’s going to end; it’s never going to get better. So, I’m going to die, and what worries me is how I’m going to die.”

What bothered him most was his sense of losing control over how he would live out his final days:

I’m just frustrated not being able to have control of my own life. Not being able to make the decision for myself when enough is enough. Ya know, we’ve come far enough, it’s time to bring it to an end. And I really envy countries like Switzerland and the Netherlands and the United States where this is possible.

Many advocates for Death with Dignity laws have applauded Dr. Low’s candid discussion about the need for these laws. Not surprisingly, opponents of these laws also chimed in about his recording but not with their typical fear mongering. Rather, some have said his statements do a disservice to hospice and palliative care professions and somehow his desire to control the manner and timing of his own death means he just never learned how to be a “good patient.”

I find this notion quite confusing and frankly a bit paternalistic and condescending. Everyone will have our own ways of facing death, and we’ll feel differently about how we want to die if the decision is up to us. There aren’t right or wrong answers, only what is best for each of us. To say a patient who desires end-of-life options in addition to high-quality palliative care is somehow a “bad patient” seems a grand departure from the patient-centered care model in which palliative care thrives.

Many people die comfortably with the help of end-of-life options like hospice and palliative care, and many more could benefit from earlier intervention of these treatments. But, assisted death doesn’t work in opposition to high quality comfort care. In fact, a poll by National Journal and The Regence Foundation found the opposite; people in states with Death with Dignity laws were more knowledgeable about end-of-life care terminology than the American population in general.

As the Oregon and Washington reports of annual usage show, it’s a small segment of the population who opts to exercise their rights under the states’ Death with Dignity Acts. It’s a seldom used option, but it’s a decision which rightfully resides in the hands of people who are dying and no one else.

View full post on Death with Dignity National Center

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.

View full post on Death with Dignity National Center