Death with Dignity: A daughter’s perspective after a prolonged, painful death

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Amy Neese's father
Amy Neese’s father

Brittany Maynard’s story has prompted discussions about our model legislation, the Oregon Death with Dignity Act, throughout the US. Over the last week, we’ve heard from hundreds of people in support of Death with Dignity. The guest post below by Amy Neese is republished with permission. The article originally appeared on Amy’s blog, Life, Laughter and a Double Espresso.

My thoughts are with a woman I’ve never met. 29-year-old Brittany Maynard lives with her husband in Portland, Oregon. She’s beautiful, with shoulder-length brown hair and light eyes. She adores her family, loves to travel and Nov. 1, Brittany will die.

Brittany has an incurable, aggressive form of brain cancer. After two unsuccessful surgeries, Brittany’s only treatment option is full brain radiation. However, the side effects from the treatment could destroy her quality of life for the little time she has left. She could die in hospice, but run the risk of developing morphine-resistant pain. While the cancer eats away at her brain, she could experience personality changes and a loss of verbal, cognitive and motor skills.

Instead of radiation, Brittany made a decision. She packed up her life in California and moved to Oregon—one of only 5 states where Death with Dignity is allowed, an end-of-life option for mentally competent, terminally ill patients with six months or less to live. In the event the dying process becomes unbearable, this act allows patients to self-ingest doctor prescribed medication that will end their life.

I read Brittany’s story on Facebook last night, and was overwhelmed by the number of those commenting on her story. Some supported her; many criticized her citing Biblical reasons. As a Christian believer, I understand her critics. However, from someone who has walked the same path as Brittany is headed, I understand her decision.

I lost my father two weeks ago. He was only 61. Like Brittany, my dad suffered from a cancer that required brain radiation. He took the chance with treatment, then we watched as everyone of Brittany’s fears materialized in my father. The radiation ultimately caused brain necrosis; the necrosis slowly but effectively ate his brain one section at a time. Although the treatment bought him more time, my father lost his quality of life. For four years, he was in chronic pain, constant angst.

My family and I were forced to helplessly watch the slow, brutal process of losing him a piece at a time. We sat beside him through numerous painful surgeries and recoveries. We stood by him as his ability to perform simple life tasks began to fail—drive a car, hold a fork, move his feet. We watched as he lost ability to comprehend and process information. We cried when he lost ability to communicate and recognize things familiar. We held his hand as he agonized from morphine-resistant pain, and fought back tears when he told us he was ready to go. In the end, we sat beside him in hospice, waiting, praying for God to bring him peace. The process was torture on my sweet daddy; the experience was heartbreaking for us.

Nov. 1, two days after her husband’s birthday, Brittany plans to ingest the pills that will end her life. She plans to be in her own bed, surrounded by family and listening to her favorite music. She will still have her mind. She will still have her dignity. She will not be in physical pain. She will have spent her final days traveling to her favorite places with those she loves.

I can’t say which way to exit this world is best; I can’t say if that final act will have any bearing on the eternal soul. I can only wonder, if given the chance again, would my dad have chosen a different path?

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Brittany Maynard’s Decision to Die with Dignity

Brittany Maynard with her Great Dane, Charlie. Photo by Dan Diaz
Brittany Maynard with her Great Dane, Charlie. Photo by Dan Diaz

Brittany Maynard and her husband were trying for a family when the news came. After suffering from crippling headaches for months, she learned she had brain cancer in January, 2014. Hardly a year after getting married and 29 years old—her whole life ahead of her—her life was turned upside down in a moment.

Shortly after the diagnosis, she underwent procedures to stop the growth of the tumor, but in April, the news took a turn for the worse. Not only had the tumor come back, but it was growing faster than ever. She was given a prognosis of six months or fewer to live.

After extensive research and talking with her family, Brittany came to the difficult conclusion: debilitating treatments wouldn’t save her life and she wanted to enjoy the time she had left with her loved ones. In her own words in an interview with CNN, “I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind.”

She wanted more control over her final days. She and her family decided to move and establish residency in Oregon so she would have the options allowed under Oregon’s Death with Dignity Act. In the same interview on CNN, she described the peace of mind she has now she’s completed the request process for the prescribed medication:

Now that I’ve had the prescription filled and it’s in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it. Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain.

Brittany’s vision for her final days are echoed by people who contact the National Center every day from every corner of the country. Sadly, policy reform around end-of-life options won’t come soon enough to help the vast majority of people who call and email us. As heartbreaking as these conversations are, they make me even more passionate about this cause. No question, all people should have the right to control their own fate when facing death.

This will be a long journey; our opponents are well funded and scare people with fictional fears which haven’t born fruit in the many years Death with Dignity has been in effect. Encouragingly, attitudes around Death with Dignity are changing as more people learn the facts about these laws. As our board member George Eighmey said in an interview with Yahoo News:

The more educated people become, the less fear they have about it and the less stigma it carries. No one is pressured into using this law; in fact, very few people do. What’s important is that the choice is available to anyone who qualifies.

Momentum is building throughout the US for more states to embrace Death with Dignity policy reform and this momentum is accelerating at a faster rate than ever. I’m honored to work for the organization which is setting the tone and tenor for the national Death with Dignity movement, and with your help and support we’ll continue to be there every step of the way.

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Religious Leaders Supporting Death with Dignity

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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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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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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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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