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

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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

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Demystifying Death: A Life Moment

Photo by Alex Dodd
Photo by Alex Dodd

Stacey Tinianov is a caffeine-powered working mama and shiny object follower, runner, suburban environmentalist, cyclist, breast cancer ass-kicker, and empowered patient advocate. Follow her on Twitter, @CoffeeMommy.

Several weeks ago, my almost 13-year old daughter sat in the backseat as I drove her to a sports activity. Frequently, as she nears her teen years, this drive time is spent in silent meditation (aka: ignoring Mom’s questions about the day) but occasionally, we sing along together to the radio.

Without exception, my favorite days are the days she peppers me with questions that instigate an open dialogue.

“What do you think happens when you die?” she asked as if she were asking what we were having for dinner.

“What do you think happens?” I asked back immediately. The verbal sidestep is a typical mom move designed to create the opportunity to hear her untainted view as well as give myself time to think about my own answer.

She was patently unmoved by my attempt to deflect.

“I asked you your opinion,” she deadpanned and we locked eyes in the rearview mirror.

“Well,” I stammered thoughtfully, “I don’t exactly know.”

It wasn’t as if I hadn’t given a great deal of thought about the process of dying and what comes after death. We have said goodbye to several close friends and family members recently and the topic has been at the top of my mind.

“Some people believe in an afterlife, some people believe in reincarnation, some people believe that dead is dead and life is simply over,” I paused. “I suppose that since energy can neither be created nor destroyed, I believe our spirits live on in some way shape and form. Maybe as energy in a star.”

I anticipated a flurry of questions related to the loved ones who have died in the past six months but none came. Instead, my daughter regaled me with her opinions on death and dying. She was intent on explaining her fear of death is not exactly a fear of death and what comes or doesn’t come next, but a fear of missing out. Fear of not being ready to be finished with life.

“I mean I cannot imagine just not being here. I just have so much to do,” she clarified.

I smiled hearing my daughter discuss death with profound honesty and without a trace of sadness. I smiled not simply because we were having an open conversation about a topic long swept under the rug but because in the context of demystifying death, my daughter and I were sharing a life moment.

This week, I’ll lead the #DWDchat discussion on Twitter to discuss our thoughts and fears about death, how they may have changed over time, and how we bring these up with loved ones. Please join us on Thursday at 7:00pm EDT to share your thoughts.

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CT Lawmakers Hear Support for Death with Dignity

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

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

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

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

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

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

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

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

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

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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.

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Demystifying Death for a Child

Stacey and her family at Race for the Cure
Stacey and her family at Race for the Cure

Stacey Tinianov is a caffeine-powered working mama and shiny object follower, runner, suburban environmentalist, cyclist, breast cancer ass-kicker, and empowered patient advocate. Follow her on Twitter, @CoffeeMommy.

Three years ago, the idea of choosing death over life was a completely foreign concept to me. And then my 85-year old grandmother had a massive stroke on the day of my son’s 9th birthday party.

Within 12 hours, I was on a plane to Texas and not long after I was in the ICU holding her hand. She was lucid but completely paralyzed on one side. She tried to talk but she was hard to understand. She was irritated to be stuck in a bed and didn’t seem to understand half her body wasn’t working. She would pump her leg and arm as if she were running to prove she did indeed have body control.

With the combination of her spunk, the support of her family gathered around her bedside and the excellent care she was receiving in the hospital, we all thought—assumed—she’d recover.

Then, she failed her swallow test. And we watched her lose her will to live.

Already I’d extended my trip an extra day but the morning of the 16th I explained to my grandmother, who was now non-responsive, I had to go. My son’s actual birthday was that day and I needed to be there for the celebration. Despite her lack of responsiveness, I know she heard me.

My grandmother died later that day. I held her hand as the machines showed her slow march and departure away from this world, boarded a plane home, and arrived in time for my son’s birthday dinner. Her death was a huge loss and felt extremely sudden yet I continue to feel that moment was a gift. I was able to hold her hand until the end and still make halfway across the country to celebrate life with my youngest child.

But explaining any goodness to my son was a different experience. At nine, he only understood death was loss. Honestly, just hours before, I was under the same impression.

As an adult, I can come to the conclusion dying at home or with as much control over the end as possible is a win, but how do we demystify death and help a child’s mind process the sometimes complicated combination of choice and loss?

This Thursday at 7:00pm EST, I’ll lead the #DWDchat discussion on Twitter to grapple with this challenging topic. Please join us to add your thoughts and observations.

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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.

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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.

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Showtime’s Time of Death

Time of Death is a new series on Showtime depicting stories of families with a terminally ill member. Presented in documentary fashion, producers of the series aim to deliver intimate portrayals of the final moments of life.

This series is well worth a moment of your time, even during this busy holiday season; it provides a realistic glimpse into the dying process—one not presented in most movies or television shows. It doesn’t contain glamorized stories of heroic and successful medical treatments. Each week, we meet new characters; each week they die. In between, they undergo medical treatments, struggle with family issues, and grapple with mortality.

In the first episode, available free on YouTube or on the Showtime website, viewers meet Michael, a man diagnosed with an aggressive form of cancer of the connective tissue. Michael accepts his impending death with grace, while his taciturn father struggles to cope with the fast-moving reality of his son’s mortality. The hospice nurse helps his family understand the dying process as he takes his final breath.

We meet Lenore in Episode 2 as she hosts her own farewell party. She’s been diagnosed with pancreatic cancer, and she chooses not to have chemotherapy. She lives the final months of her life without invasive treatment, and the episode follows her and her husband of 53 years through her final days.

As I watched, I was struck by how true-to-life the episodes were. Family members quarreled and children acted out. The nurses were patient, and the terminally ill individuals were clear in their communications about end-of-life planning desires. Having worked for so many years with people who are dying, I’m frequently put off by depictions of death in the media. It’s either glamour or disaster.

In truth, death is mundane. It happens every day, everywhere.

The first season, six episodes in total, follows Maria and her family’s story. Dying and parenting at the same time are tough business, and she muscles through it with determination. I’m about halfway through the season, and I know she’s not going to pull through miraculously. And yet, I’m compelled to keep coming back to watch more of the season. This series eschews the unrealistic portrayals of death common in our culture, relying rather on compassionate depictions of how we die.

Compelling television, indeed.

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New Pew Findings: Support for Death with Dignity

Pew Research Center logo

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

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

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

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

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

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

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

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

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

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

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

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Time of Death

The unflinching look at death in Showtime’s new series Time of Death reminds me of the frank and life-affirming documentary How to Die in Oregon about the Oregon and Washington Death with Dignity Acts. Most of the time, movies and TV series which include any aspect of our common inevitability, death, turn only a glancing gaze at the taboo subject.

Through action or suspense shows, death is usually quick and brutal. Detective dramas analyze death after it’s happened; medical programs are overly optimistic about the realities of CPR. Comedies almost always avoid the topic all together (though How I Met Your Mother bucked the establishment in one of its highest rated episodes). For the most part, producers of visual media shy away from death. They’re likely concerned viewers won’t tune in to watch the complicated emotions around a family losing a loved one to a terminal illness or the difficult physical realities of dying.

This was certainly the case when How to Die in Oregon debuted at the Sundance Festival. In the first showing, already sparsely attended, the audience grew thinner as people walked out midway through the film. Then, something remarkable happened; the people who stayed through the show raved about it so much, by the end of the festival, viewers had to fight the crowds for a seat, and ultimately the film won one of the highest awards at Sundance.

How to Die in Oregon went on to sweep up awards at many film festivals, aired on HBO many times, and was nominated for an Emmy. In late May this year, it became available through Netflix streaming, and it’s popularity soared once again. The documentary is now reaching a whole generation of viewers who are casually coming across the film while surfing for something to fill the time. (Though, as one viewer on Twitter warned, you might want to be mindful in which setting you watch it: “Lesson learned: don’t watch “How to Die in Oregon” in public. Specifically the gym. Hey maybe my tears and sweat look the same?”)

A film which was once perceived to be as avoidable as the topic it addresses—death—now draws people in and hangs onto them through the final breath and the credits roll. Will Showtimes’ Time of Death have the same effect of bringing death out in the open; something to emote about on Twitter? I hope so.

Death, dying, and grieving are difficult to grapple with; it’s much easier to avoid thinking about any of these realities. But ignoring them doesn’t reduce the chance death will happen to each of us, and by not facing this directly, all too often we aren’t having the conversations to let our loved ones know what we’d want if we can express our end-of-life care wishes ourselves. Heck, most of us aren’t even thinking about what kind of end-of-life care we’d want.

I truly hope shows like How to Die in Oregon and Time of Death reach a wide audience, encourage more producers that shows about death aren’t a dead end, and as a culture we begin to face our mortality with honesty and more openness.

You can watch the first episode of Showtime’s Time of Death below.

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