Religious Leaders Supporting Death with Dignity

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Lord Carey on assisted dying

The House of Lords in the UK will hear testimony and debate their proposed Death with Dignity bill this week. The bill closely emulates our model legislation, the Oregon Death with Dignity Act, which Oregonians approved in 1994 and reiterated their support in 1997. Much like in the US, Death with Dignity is a hotly debated topic in the UK, and the lead up to this week’s hearing there’ve been many excellent op-eds in support of the law. Some which have come out in the last week have been by prominent religious leaders.

All of them looked at their understanding of their religious doctrines in the context of being close to loved ones who’ve died. Each challenged their Churches’ official statements and how teachings of sanctity of life are consistent with giving people who are dying more options in their final days.

Last week, the former Archbishop of Canterbury, Lord George Carey shared why he changed his mind and now strongly supports the proposed Death with Dignity law in the UK. This week has been witness to supportive statements from Nobel Laureate Bishop Desmond Tutu and the current Bishop of Buckingham, Alan Wilson.

In each of these opinion pieces, these leaders reflected on how their religious traditions and compassion have led them to support the bill proposed by Lord Falconer. In his letter to the Daily Mail, Lord Carey directly took on claims made by opponents within his own church and reflected on his change of heart:

The fact is that I have changed my mind. The old philosophical certainties have collapsed in the face of the reality of needless suffering…In strictly observing the sanctity of life, the Church could now actually be sanctioning anguish and pain, the very opposite of the Christian message of hope.

Some complain that new laws governing the right to die would allow doctors to ‘play God’. But that is an argument without substance.

Health professionals already have power over life and death in numerous ways—such as the remarkable way in which newborn babies are kept alive until they are old enough to survive outside an incubator, or through complex surgical transplants.

The Church must start to face up to the reality of the world as it is.

On the heels of Lord Carey’s op-ed, Bishop Tutu weighed in with an opinion piece in The Guardian. Like Lord Carey, Bishop Tutu reflected on his lifetime of being a friend and spiritual advisor for people at all stage of life, including their final days. These experiences have framed how he thinks about, has documented, and discussed his own end-of-life wishes with his loved ones. They also caused him to think about the options he would want available if he were to receive a terminal diagnosis with six months or fewer to live, and he came to the conclusion, “I revere the sanctity of life—but not at any cost.”

The most recent affirmation from a religious leader was from the current Bishop of Buckingham. His statements in support of the proposed UK bill were covered by The Telegraph. Not only did he clearly explain the differences between assisted suicide and what the proposed bill would actually allow–assisted dying–he also discussed how his Church’s teachings are consistent with patient autonomy stating, “I have come to support assisted dying…precisely because I do believe strongly in the sanctity of life. Part of honouring this is respecting people’s integrity to make decisions about themselves.”

Supportive statements from prominent leaders from any community help those within the group better understand assisted death. What’s especially great about these op-eds is these religious leaders are talking about how Church doctrine supports end-of-life options outlined in Death with Dignity laws. These bishops’ public statements signal a major shift in the way people all over the world are thinking about and understanding what was once a radical idea: controlling the manner and timing of one’s own death.

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Facing Death Together

Brant Huddleston
Brant Huddleston

After 17 years working for IBM, Brant Huddleston left the corporate world and became an entrepreneur. He’s recently started the Dance to Death Afterlife podcast to learn, with his listeners, about death and dying in an upbeat and educational way. You can follow the podcast on Twitter: @D2DAfterlife or Facebook.

Today is the tomorrow you worried about yesterday….and all is well.

The last time I saw my brother was on a boat in the middle of the Severn River near Annapolis, Maryland. It was summer, and the family had gathered to spread his ashes. John died in April 1992 at age 39, just three weeks after the death of my father. It was a hard year.

It was then I began thinking more deeply about death, and as a bona fide geek, how technology might enhance ways to tell the stories of the dead. My father’s life—64 years of adventure, living overseas, fighting wars, and raising six children—was reduced on his burial plaque to the infamous hyphen found between date of birth and death. My brother’s life is even less memorialized, as there is no marker to him of any kind, and rarely a mention on his birthday or death day. Maybe it is just too much for us to bear, especially my nearly 90 year old mother, who grieves his loss more than the rest of us combined. We are, as are so many others, practicing our own form of death denial. So as the Severn River swallowed up the last of my brother’s physical presence, an idea was born.

As a geek, I imagined using technology to create something I called a talking headstone, which would use multimedia to tell the stories of the dead. The living could point at a ”memorial,” which might be in the middle of a river, and ask, “Who’s there?” Then, a short audio/visual presentation would play, conveying the dead person’s stories and a celebration of his or her life. The talking headstone would expand the hyphen and make it come alive! But in 1992, the technology to make such a headstone did not exist, so I put the idea away for nearly two decades.

Years later, when I finally began shopping my idea among funeral directors, I learned something about their culture: many whom I encountered were staunchly resistant to change and hostile to new ideas. I immediately recognized the culture, for I worked for IBM at a time when they too stubbornly fought inevitable agents of change, like the personal computer, with such ferocity that the company nearly collapsed. This tendency for a mainstream industry to resist changes evoked by disruptive, new ideas is brilliantly described in the book The Innovator’s Dilemma by Harvard Professor Clayton Christensen.

From Christensen’s book and my personal experience with IBM, I knew the mainstream funeral services industry, with its legacy of digging holes and carving in stone, would never accept my high-tech invention. The future of the talking headstone lay elsewhere, with the rogues, the rebels, the dreamers, and those willing to challenge the entrenched paradigms of modern death practices. They’re the ones who, as the Japanese wisely advise, “ask why five times,” and they are among the very people I now seek as guests for my new Dance to Death Afterlife podcast.

The fear of death, and the subsequent denial of death, is pervasive in the United States, and it is unhealthy. Together we have an opportunity to change that, and if we follow the irrevocable pattern Professor Christensen traces back to the beginning of human history, that change will come from outside the mainstream. It starts with a vision. I believe by taking an unflinching look at death—a natural and unavoidable process—we’re better able to accept it, plan for a beautiful one, and most importantly, embrace every precious moment of life as a miraculous gift to be savored and cherished.

Others smarter and more talented than I have gone on to build the talking headstone, and I’m excited for them. My purpose now, as creator and host of the podcast, is to shine a light on their accomplishments (and all other facets of death, including those from the mainstream) so that together we can change our world a bit for the better, overcome our fears, and enjoy a fuller, more abundant life…for as long as it lasts. I want my listeners to be well informed and in control of their own experiences, as much as they can be. For if we don’t design our lives, and our encounters with death, then someone else will design those experiences for us, and it may not be what we truly want.

Did my brother John even want to be cremated? I don’t know. No one ever asked him.

Editor’s note: catch Melissa’s interview with Brant on his Dance to Death Afterlife podcast!

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Washington’s 2013 Death with Dignity Report

Death with Dignity by the numbers 2013
Death with Dignity by the numbers

Death with Dignity laws take what’s happening in the shadows everyday, in every state, and create an open, safeguarded process to allow terminally ill people to decide their own fate. These laws protect everyone involved—patients, their families, doctors and pharmacists—and provide a transparent process which leaves no doubt the decision rests solely in the hands of people who are dying and no one else.

As part of this transparency, the Washington State Department of Health is required by law to report information collected during the medication request and dispensing process. The 5th annual report was recently issued. One of my colleagues in the Death with Dignity movement explained, “there are no surprises, and the law remains remarkably unremarkable.”

After five years, more Washingtonians have come to understand Washington’s Death with Dignity Act, and not surprisingly, more people requested the prescribed medication.

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

  • 119 people hastened their deaths under the Washington Death with Dignity Act, and a fourth of the people who requested the medication didn’t take it.
  • Prescriptions were written by 89 different physicians.
  • 77% of the participants had been diagnosed with terminal cancer, an additional 15% with ALS.

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

  • 86% of the people who died after exercising their rights allowed under Washington’s law in 2013 were enrolled in hospice.
  • Over 96% of the people who used the law died at home or in a long term care facility.

Much like the 16 years of data from Oregon, these five years of Washington’s statistics reveal no surprises. The patterns in the data haven’t changed.

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Dignity Watch: Lawmakers in support of Death with Dignity

What a year it’s been for advancing Death with Dignity policy reform! All this activity is even more impressive considering many states have abbreviated legislative sessions this year.
Picking up on the momentum from Vermont enacting the first law of its kind on the east coast and the first passed through a legislative process, several lawmakers on the northeastern seaboard advocated for Death with Dignity bills with more enthusiasm than they have in the past. Bills were introduced by elected lawmakers in Connecticut, Massachusetts, New Hampshire, New Jersey, and Pennsylvania, as well as Hawaii and Kansas.

Many of the legislative committees considering these bills heard impassioned testimony about the importance of safeguarded assisted death legislation, regional newspaper readers and editorial boards took strong stances in support, and lawmakers spoke prominently about the Death with Dignity bills they support.

The Connecticut bill, introduced by Rep. Betsy Ritter and Sen. Edward Meyer, was the most actively discussed in public forums this year. On February 7th, the Hartford Courant editorial board published a strong endorsement of the proposed legislation. The Connecticut joint Public Health Committee heard public testimony on March 17th. Dozens of people—residents of the state, Connecticut elected 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.

Prior to the public hearing, then State Rep. Holder-Winfield spoke to voters about why he supports Death with Dignity while he campaigned for a vacated state senate seat. Previously an opponent of these laws, he changed his mind after witnessing his mother’s painful and protracted death in 2012. In an interview with the New Haven Independent he explained, “Going through that and watching her suffer changed my perspective. The whole time she was in pain. She was coherent. I think she would have liked the option.”

In this year’s short session, it was impressive the Connecticut bill received as much interest as it did. Typically the state legislature only considers budget-related bills. While the bill didn’t advance before the deadline, that it was even considered this year is an indication of the growing call for Death with Dignity policy reform.

Two states, Pennsylvania and New Jersey, have longer legislative sessions this year, and their Death with Dignity bills are still active for consideration. The Pennsylvania bill was introduced in 2013 and will remain active throughout this second year of their legislative biennium. Pennsylvania State Sen. Leach proposed Death with Dignity legislation because, as he mentioned in an editorial, “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.”

The champion of the New Jersey bill, Assemblyman Burzichelli, started his push for this legislation during the run-up to our 2012 near-win for Death with Dignity in Massachusetts, and after watching Vermont Governor Shumlin sign the bill into law last year, he was encouraged to reintroduce the proposed legislation again for the 2014-2015 biennium. In an online interview, he stated, “People want control of their circumstances and they want additional options.”

We couldn’t agree more with all of these outspoken elected lawmakers. That so many are courageously speaking openly in support of these laws allowing terminally ill individuals to decide their own fates is a bold step forward for our movement. Like you and I, these lawmakers believe all Americans should have the additional end-of-life options afforded to them under Death with Dignity laws. With your help, the National Center, and its politically-oriented sister organization the Death with Dignity Political Fund, will continue to support these efforts and set the course of the movement throughout the US.

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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

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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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