VT Gov Shumlin Signs Historic Assisted Death Bill

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For Immediate Release

Contact: Peg Sandeen, MSW, Executive Director
              Death with Dignity National Center
              503-228-4415
              psandeen@deathwithdignity.org

Death with Dignity National Center, the nonprofit organization which advanced and defends the groundbreaking Oregon and Washington Death with Dignity Acts, applauds Vermont lawmakers for making Vermont the third state in the US allowing for safeguarded assisted death. With Governor Peter Shumlin’s signature today, Vermont took a historic step forward by becoming the first state to pass a law modeled on the groundbreaking Oregon and Washington Death with Dignity Acts through a legislative process.

“Twenty years ago this summer, I led a small group which proposed a new idea: terminally ill adults should be able to determine the timing and manner of their deaths within certain, well-defined guidelines if they desired. What was once a novel idea, has become model legislation, codified in other states.” said Eli Stutsman, lead author of the Oregon and Washington Death with Dignity Acts and founding board member of the Death with Dignity National Center.

“We applaud the lawmakers in Vermont for taking a bold step toward expanding end-of-life options for terminally ill Vermonters,” said Peg Sandeen, Executive Director of the Death with Dignity National Center. “Vermont’s new law echoes the growing call throughout the US for policy reform around assisted death.”

Today’s historic event comes after over 10 years of diligent work by Patient Choices Vermont. Sandeen added, “We have been committed to policy reform efforts in Vermont for over 10 years, and we are proud to partner with the dedicated individuals involved in Patient Choices Vermont. Vermont lawmakers have shown their commitment to respecting their constituents’ wishes for more end-of-life options.”

The new Vermont law emulates the Oregon and Washington Death with Dignity Acts and provides guidance for terminally ill individuals seeking a peaceful death by ingesting prescribed medication. With the new law, patients are able to die in the comfort of their own homes and say their final goodbyes to loved ones.

The Death with Dignity National Center is proud to have partnered with Patient Choices Vermont to bridge the US in advocating for safeguarded assisted death laws like the ones in Oregon, Washington, and now Vermont.

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Vermont House and Senate Pass Death with Dignity

Vermont made history today!

The Vermont House and Senate both approved the same version of a law based on Oregon’s model Death with Dignity legislation, and the bill now heads to the governor’s desk for signature. In the past, Governor Shumlin has indicated he’ll sign the bill if it reaches his desk. With the Governor’s signature, Vermont becomes the third state with an assisted dying law and the first state to enact this law through a legislative process. A historic achievement.

This achievement comes after over 10 years of diligent work by our partners, Patient Choices Vermont. In August of 2002, dedicated volunteer Dick Walters brought together a group of Vermonters who wanted their state to allow the same rights Oregonians had because of the groundbreaking Death with Dignity Act. Knowing he needed to consult experts in passing this sort of law, he contacted the only organization which had successfully written and passed such a law: Oregon Death with Dignity, the predecessor of the Death with Dignity National Center.

Right from the beginning, the Death with Dignity National Center formed a strong partnership with Dick Walters and his group, Patient Choices Vermont, to advance legislation allowing for safeguarded assisted death, and we’ve been there every step of the way. Over the years, we’ve joined our credibility, knowledge, and connections to end-of-life care experts with Patient Choices’ dedication to Death with Dignity policy reform in their state.

Beyond our countless hours of work lending political experience to help Patient Choices, we connected them to people who’ve seen Oregon’s law in action through their work in hospice and palliative care. One such expert is Ann Jackson, former Executive Director of the Oregon Hospice Association. Reflecting back on her most recent trips to Vermont, Ann said:

What was most different—and gratifying—about Vermont’s experience was that the House and Senate, as whole bodies, were able to discuss or debate the issue. The bills did not die in committee. What was most interesting was the quality of the discussions in committees—thoughtful and looking for good and truthful information.

The House and Senate debates were more about innuendo and lacked depth. This is not criticism—it is expected that committees seek information and learn and teach. What was most frustrating is that Oregon’s credibility is questioned, even when data and independent studies corroborate state findings. The same dire predictions are being made now that were made in Oregon in 1994 and 1997—and proven wrong—and in every state and country that has considered physician-assisted dying before and after.

But today, facts and data won. Oregon’s law now has 15 years of data demonstrating the groundbreaking Death with Dignity Act written by our founding board member Eli Stutsman is no longer an experiment or test case; it now serves as the model for end-of-life care policy reform. All of us here at the Death with Dignity National Center applaud Vermont lawmakers and Patient Choices Vermont for being truly dedicated to patient-centered care and moving one step closer to allowing all Vermonters to determine how to live out their final days when death draws near.

The bill now heads to Governor Shumlin’s desk for final approval. With his signature, Vermont will take the historic step of becoming the first state to enact Death with Dignity through a legislative process.

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For Immediate Release: Vermont Senate Passes Amended Death with Dignity Bill

Contact: Peg Sandeen, MSW, Executive Director
              Death with Dignity National Center
              503-228-4415
              psandeen@deathwithdignity.org

The Vermont legislature is in a position to enact historic legislation in the next few days. Should the Vermont House vote to concur with a Senate amendment passed on Wednesday, May 8, Vermont will become the first state in the nation to pass a Death with Dignity law through the legislative process.

The bill has had a difficult journey to passage and faces two more hurdles: the above-mentioned House concurrence and signature by the Governor. In past statements, Vermont Governor Peter Shumlin has promised to sign carefully-safeguarded Death with Dignity legislation, and he issued the following statement today:

I understand the deep convictions held by Vermonters on all sides of this extraordinarily personal issue. But I also know how important it is for those who face terminal illness and tremendous pain to have this choice, in conjunction with their physicians and loved ones, in the final days of their lives. I am grateful for the Legislature’s continued hard work on this difficult issue.

Legislative committees have heard days of emotional testimony from opponents and supporters, including Ann Jackson, former Executive Director of the Oregon Hospice Association and George Eighmey, who helped terminally ill Oregonians navigate the Oregon’s Death with Dignity law for 12 years. Lawmakers themselves participated in days of debate and several rounds of voting. The House concurrence vote, likely to occur in the next few days, will be the bill’s second trip to the House this year.

In fact, legislators have been exploring this issue since 2003 in the Green Mountain State, when a bill entitled the Vermont Death with Dignity Act was introduced by 38 sponsors in the House and 8 members in the Senate. According to Peg Sandeen, Executive Director of the Death with Dignity National Center, “We are so pleased that legislators in Vermont have taken another bold step toward expanding end-of-life options for terminally ill Vermonters. We have been committed to policy reform efforts in Vermont for over 10 years, and we are proud to partner with the dedicated individuals involved in Patient Choices Vermont.”

As with any legislation, there are no guarantees the House will support the Senate’s version of the proposed law. Sandeen added, “While there are no promises nor guarantees when it comes to the legislative process, our research shows Vermont has led the nation on improving indoor air quality, marriage equality, prescription drug access and Medicaid reform, we believe Vermont will take the lead on end-of-life care reform, also.” Should the Vermont House concur with the Senate version of the bill, Vermont will become the third state in the US, following Oregon and Washington, with a carefully-safeguarded law allowing terminally ill and mentally competent adults to hasten their deaths.

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Vermont House Passes Death with Dignity

VT Statehouse, photo by Mark Danielson on flickr
VT Statehouse, photo by Mark Danielson on flickr

Vermont took another step toward allowing terminally ill people to decide the manner and timing of their deaths through a safeguarded process. Today, the Vermont House approved a bill emulating the time-tested Oregon and Washington Death with Dignity Acts by a vote of 81-64. The path has been a long one, and it still has a ways to go before a final version would be presented to Governor Shumlin.

Since its introduction to the full Senate for debate earlier this year, the proposed bill has taken a meandering path. In the Senate, the bill was drastically amended before being approved and sent to the state House. In the House, the Senate bill was introduced and referred to the House Human Services Committee for consideration.

After listening to hours of expert testimony, the committee voted to restore the original bill’s safeguards, bringing it more in line with the existing Death with Dignity laws. Because of the changes to the structure of the bill, the House Judiciary Committee had to go through it with a fine tooth comb to make sure the proposed bill would work with existing Vermont laws.

At the end of last week, the Judiciary Committee had completed its inspection, and approved the bill for consideration by the full House. After a lively floor debate over the course of two days, the House advanced a bill today which differs from the Senate bill. Before a bill can be sent to the Governor, the Senate either needs to agree to the House’s amended bill or request a Committee of Conference made up of House and Senate members to find common ground between the two versions. If a Committee of Conference is assembled, the version they come up with would need to approved by both the Senate and the House before moving to the Governor’s desk.

No doubt about it, the Death with Dignity movement is standing on the precipice of monumental change, and we’ll be there every step of the way until all terminally ill Americans have the right to a dignified death. Thank you for your support.

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Vermont House Human Services Committee Advances Death with Dignity

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

Some highlights:

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

Read more about these & other states >

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

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Vermont House Committees Hear Testimony on Death with Dignity Bill

Patient Choices VT Ad "Now--Not in 10 Years"

The proposed Vermont Death with Dignity bill started its journey through the state’s House of Representatives in earnest this week. The bill (Senate Bill 77) took some unusual turns before being approved by the Senate on February 14th of this year. This week, House Judiciary and Human Services committees heard from Senators about the bill’s path in the Senate and end-of-life care experts familiar with the need for safeguards in Death with Dignity laws.

The hearings started on Wednesday with Sen. Claire Ayer explaining the process the bill went through in the Senate. She was followed by many people with extensive knowledge about Death with Dignity laws including Jean Mallary—widow of Vermont Congressman Richard Mallary.

Hearings continued on Thursday and included supportive testimony from several notables: two former governors, Barbara Roberts from Oregon and Madeleine Kunin from Vermont; Harry Chen, Vermont Commissioner of Public Health; George Eighmey, the newest Death with Dignity National Center board member, former Oregon legislator, and former executive director of the Oregon nonprofit which works directly with patients to access the state’s Death with Dignity Act; and respected palliative care physician Diana Barnard.

The hearings this week wrapped up with expert testimony from Ann Jackson who headed up the Oregon Hospice Association when Oregon’s law went into effect and Marnie Wood (featured in Patient Choices’ Ad available on their website) whose sister used Oregon’s law.

Next up: a public hearing on Tuesday, April 16th. Stay up-to-date through our blog and on social media through Facebook and Twitter.

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New England Journal of Medicine Looks at Washington’s Death with Dignity Act

Dr. Remmel with his sons, photo provided to NBC News by Grace Wang
Dr. Remmel with his sons, photo provided to NBC News by Grace Wang

When Washington’s Death with Dignity Act took effect in 2009, medical groups throughout the state took the law’s built-in safeguards as a guide for formulating their own internal policies for honoring their terminally ill patients’ new legal rights. One of these institutions, the Seattle Cancer Care Alliance, just published an analysis of their experience with patients who requested the prescribed medication in the New England Journal of Medicine. Their conclusion: “Overall, our Death with Dignity program has been well accepted by patients and clinicians.”

Echoing what we’ve seen through the Washington Department of Health’s annual reports of usage, this study found the law is used by a small minority of the clinic’s patients and “patients and families were grateful to receive the lethal prescription, whether it was used or not.”

The 114 patients involved in the study inquired about the clinic’s Death with Dignity program between March 5, 2009, and December 31, 2011. Among these patients, 74 either decided not to start the request process or started the process and didn’t complete it. Of the 40 terminally ill people who did receive the medication, 60% of them died after ingesting the medication. One of these people was Dr. Ethan Remmel, whom I had the privilege of working with toward the end of his life in 2011. He was a truly giving and generous individual I’m pleased to have known, and I’m so happy his life is being honored and celebrated in conjunction with this study.

In one of the many news stories about this study, Dr. Elizabeth Loggers, an oncologist and the center’s medical director for palliative care, got to the heart of why the center developed a policy to honor patient’s wishes under Washington’s law stating, “You can’t be an oncologist for very long without honestly facing the fact that not everyone can be cured of their cancer. In this situation, you are ethically obligated to provide exceptional care for people who are dying of their illness.”

In addition to the safeguards already written into the Washington and Oregon Death with Dignity Acts, the Seattle Cancer Care Alliance additionally stipulated only current patients of the clinic could request the prescribed medication, a social worker at the clinic is assigned to each person who requests the medication, and the patients were required to sign an agreement stating they won’t ingest the medication in a public space.

The wide news coverage of this study is encouraging. It further demonstrates the conversation about how we die and the necessity for Death with Dignity Acts are growing on a national scale. All of us here at the Death with Dignity National Center are excited to be such an integral part of these discussions.

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Death with Dignity was Booth Gardner and Blair Butterworth’s legacy

Christian Sniderman
Christian Sniderman

Christian Sinderman is a political consultant based in Seattle, Washington who’s worked on campaigns for former Gov. Chris Gregoire, Gov. Jay Inslee and other transportation and education measures. This article originally appeared in the Seattle Times, and it’s republished with permission.

Last month, Washington lost two important, provocative voices. Former Gov. Booth Gardner, a public figure and master of the understatement, succumbed to a decadelong battle with Parkinson’s disease. Democratic strategist Blair Butterworth, a behind-the-scenes figure and master of bombast lost a tragic battle with cancer.

Each sought different paths to make a lasting mark on our political landscape. Booth served as governor for two terms; Blair helped elect two governors. Booth quietly shaped public opinion; Blair launched expletive-laden rants to bend political will. They united in 2008 to seek passage of Initiative 1000, which codified Washington’s Death With Dignity Act.

Both men passed within weeks of one another, almost four years to the date of the law taking effect. Blair used the law they fought to pass.

The law stands as a testament to Booth’s inspiring perseverance—taking on a statewide campaign while suffering the daily challenges of Parkinson’s—and Blair’s iconoclastic determination to vanquish the opponents of ultimate self-determination.

Working with these two men, whom I considered friends and mentors, was an honor for me, a testament shared by others on the campaign. Unlike many campaigns, this one was personal. For Booth, his passion was shaped by personal journey into disease and loss of autonomy. Blair told a harrowing story of a grandparent in England who suffered needlessly, and expressed his own concerns for end-of-life options. For me, it was seeing a beloved grandfather slip into depression, and ultimately, suicide at the hands of slow-burn cancer.

That a life lived with dignity and pride can devolve into fear and dependence is a concern shared by many. Initiative 1000 was approved by a healthy majority of Washington voters, although we remain one of only two states where the end-of-life choices are legal.

I-1000 was in many ways a bookend to careers that spanned decades and impacted lives at every age. After all, what is the point of a death with dignity if life isn’t lived to its fullest potential?

In addition to a passionate devotion to their own children, Booth and Blair were dedicated to success for every Washington child. Booth was an education governor who delivered more than rhetoric. Blair’s final campaign was the February 2013 passage of the Seattle schools levy—the last of many levies he worked to pass to assure quality education and opportunity in communities across the state.

I never got to know Booth as a healthy man. By the time we met during Maria Cantwell’s 2000 U.S. Senate campaign he was already suffering the impacts of early-onset Parkinson’s, but that didn’t stop him from being an active and engaged participant, strategist and needed calming force.

We became fast friends. He had a lifetime of easy, engaging social relationships to draw from but still made room for new people.

Blair was a harder nut to crack, but over cocktails he would share incredible stories of growing up overseas, his early Peace Corps work and the kids in Africa he supported decades later through a library named in his honor.

The lessons both men leave the people currently serving in the spotlight, and shadows, of public life are clear: Act with conviction, courage and compassion. Focus on the people whose lives stand to benefit from our actions. Oh, and don’t forget to have a little fun in the process.

Since leaders like Booth and Blair started their path more than 30 years ago, Washington has grown tremendously, but we remain a state where ideas matter, where innovation is embraced, and where good ideas, applied with charm or profanity, can achieve acceptance.

Ultimately, it was this universal belief in human dignity and self-determination that drove both men. Their lives are a reminder that in politics and public life, it is more about winning and losing, it’s about the legacy you leave behind.

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Game of Thrones and Living with Death

Game of Thrones Season 3, image care of HBO
Game of Thrones Season 3, image care of HBO

Any discussion of water-cooler television these days has to include HBO’s Game of Thrones. The show is based on a best-selling series of fantasy novels by George R.R. Martin, with five books presently in print and two more to come. I first discovered the books over ten years ago, and I find it amusing to see a whole new audience react to the many shocking plot twists and unexpected deaths of major characters through a different medium. With a new season set to premiere this Sunday, the buzz is heavy around who’s survived the events at the end of the previous season, and who’ll be next to go. Though set in a fantastical medieval world where seasons last for years, the reality of death is a constant in Martin’s universe. The nation of Westeros (or The Seven Kingdoms) is rarely at peace and, even in peacetime, disputes between various feudal lords, bandits, drought, famine, disease, and the ever-approaching threat of winter and its accompanying deprivation make the threat of sudden death routine for its inhabitants.

As the series opens, the realm is enjoying one such brief era of relative peace and stability. However, as the reader or viewer soon learns, longstanding tensions between noble houses will erupt in civil war before the first book is over. Also, unbeknownst to all but a small group of characters, a supernatural force is stirring in the frozen north of Westeros, which is nothing less than the embodiment of death itself. Amid the high fantasy battles, dragons, tournaments and court intrigue, Martin finds considerable space in his epic for rumination and exploration of the pervasiveness of death that attends these more expected aspects of the genre.

As the series progresses, we learn more and more about the myriad of cultures, faiths and organizations that make up Martin’s world. One major character finds herself unwittingly involved with a religious organization dedicated exclusively to the worship of death, as embodied by the Many-Faced God. People find their way to the temple, seeking ultimate relief from their particular suffering and there receive the “gift” of the Many-Faced God in return for their more worldly possessions or an act of service. The reader is able to piece together a jumble of religious icons populating a corner of the temple which are various gods of death from the world’s many religious sects. Here, the universality of dying is embraced as being of primary importance as the unifying existential problem of an entire world.

One of the regional cultures of the Seven Kingdoms, inspired by the Vikings of our history, simulates the act of dying as part of its more orthodox religious practices. The Ironborn, represented on HBO by Theon Greyjoy and his sister Yara, engage in a “drowning” ceremony, rendering those who undergo it technically dead, or at least unconscious and water-logged. Those who are “drowned” are brought back by CPR masked as religious ritual, to a chorus of “What is dead may never die.” In a world characterized by constant violence and the less glamorized ravages of poor sanitation and a lack of scientific medicine, the Ironborn react by glorifying a premature death, assigning a high honorary and spiritual value to deaths in battle and pervasive disdain to death from natural causes and the infirmities of old age. To them, living to old age and becoming increasingly dependent on others is a point of dishonor. While they take it to a particular extreme, there are few corners of this world that don’t share the Ironborn contempt for the vagaries of aging.

In the world Martin unfolds for us, death is both understood as an inevitable part of life and enveloped in a cloak of superstition and cultural judgments. As the books progress, the magic and sorcery one would expect of the genre starts to come into play. Many of these otherworldly powers are expressed as a defiance of death, as characters are resurrected through sorcery and corpses walk in the northern regions. The reaction to these deviations from the laws of nature is one of fear, distrust, or aggression among other characters. One character who’s been brought back more than once has an ambivalent reaction to being spared, becoming increasingly disconnected from his own history and identity. “It all fades. Sometimes I think I was born on the bloody grass in that grove of ash, with the taste of fire in my mouth and a hole in my chest,” he says. When such intervention is offered as a possibility, it’s generally discouraged, treated as a taboo and provides an imitation of life if successful. Also, undoing a person’s death always comes with a terrible and often unforeseen price.

The line between science, most commonly represented by a monkish order known as the Maesters, the healers of Westeros, and magic is generally blurred in this world. While the Maesters severely discourage their members from practicing sorcery, their science isn’t sufficiently advanced to contend with the many ways of dying they attend to. Most commonly, we see a Maester take what limited actions he can in the face of a serious injury or illness and focus on what we know as palliative care, often adding the patient’s fate is in “the hands of the gods.” Considering active intervention involves leeches and other primitive artifacts of medieval medicine, the treatment often boils down to controlling pain with “dreamwine” and “milk of the poppy.”

In one such scene, which will be memorable to anyone who’s been watching the show, a prominent character has been fatally wounded while out hunting. When his closest friend hears of his condition, he rushes to his side to find everyone in the room has given up hope. The dying man knows too, saying “The stink of death, don’t think I can’t smell it.” When the Maester offers him milk of the poppy, he refuses with “Away with you. I’ll sleep soon enough.” In his last conscious moments, he insists his friend writes down his last will and testament, and when that’s done, summons the Maester again and asks him to “give me something for the pain and let me die.” As a man who has survived multiple wars, it’s clear he knows there’s nothing else to be done for him and having accepted that truth, he prioritizes controlling the manner of his death over the time that would be spent trying to fight the inevitable.

In contrast to scenes such as that one, there’s a death which seems more at home in 21st century American society. An important Lord spends the better part of two books fighting what Martin broadly hints is cancer—clearly a rarity in this world. Apart from a few loyal servants, his Maester, and his daughter, he fights a very different sort of battle with little notice. When his daughter visits him, she reflects he “had been a strong man, and proud. It hurt her to see him reduced to this.” His son manages the affairs of the domain and, along with pretty much all of the Lord’s circle, avoids dealing with the Lord’s slow dying. It becomes clear a terminal condition with no obvious external cause is a situation for which these characters lack the vocabulary and empirical understanding to discuss.

In contrast, many songs are sung and stories told about famous deaths in war. Paradoxically, through this lack of understanding, the character in question is left to die a natural death, medicated only with painkillers at the end. As his death approaches, his daughter reflects, “He was ever a fighter…a sweet stubborn man.” The Maester responds, “Yes…but this battle he cannot win. It is time he lay down his sword and shield. Time to yield.” He isn’t subjected to painful and invasive procedures that would tack on a few extra weeks because the procedures don’t exist in Westeros.

Oddly enough, the brutal realities of Martin’s fictional society plausibly align in this character to produce a way of dying that matches what most Americans describe as their ideal way to go; at home, with all possible measures taken to control the pain, and in the company of family.

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Dying Wish: A Documentary About a Peaceful Death

Karen van Vuuren is a former broadcast news journalist with experience working in the field of end-of-life and directed the documentary Dying Wish. Below she explains more about working with Dr. Miller to film the documentary.

Karen’s currently completing a new documentary, Go In Peace! on caring for veterans with PTSD who are facing serious illness or death. She is also the editor of Natural Transitions Magazine, a quarterly magazine focusing on conscious, holistic approaches to end of life.

Retired surgeon, Dr. Michael Miller, knew he wanted to die in his own bed, at his home in Boulder, Colorado. His desire was to leave surrounded by family, and under the care of a supportive hospice team. Dr. Miller had done his homework on his end-of-life choices. He’d researched the dying process and discovered that patients who stopped eating and drinking often had an easier exit.

Yet, Dr. Miller found few studies specifically addressing Voluntary Refusal of Food and Fluids. What evidence he came across, proved largely anecdotal. He also discovered a lack of knowledge and information relating to dehydration and the dying process, not just among patients and their families, but also among professional healthcare providers. The documentary Dying Wish is the gift of a compassionate physician who laments his own past lack of skill at the bedside of the dying.  

Dr. Miller had decided when his own body began to signal his closeness to death, he’d allow nature to take its course by stopping drinking and eating. His existential pain around a prolonged dying process, and his belief that dehydration would alleviate some of his more troublesome symptoms, led to his decision to refuse food and fluids.

When filming began, Dr. Miller hadn’t yet embarked upon his fast. For some time, he’d been dealing with pain, nausea, and diarrhea, for which he was being treated by his hospice care team.

When Dr. Miller called a Colorado radio station with a request for a documentary about his death, he never imagined he’d meet a journalist with end-of-life expertise. In his conversation with me, Dr. Miller first focused on the possibility of a radio feature. When he learned of my previous experience as a television producer, he suggested a film. Within days, a camera crew was assembled and standing by for daily visits to Dr. Miller’s house.

Over the course of two weeks, Dying Wish followed Dr. Miller throughout his fast, to his death on the thirteenth day of not eating and drinking. We see the physical changes in him, the dizziness associated with hypotension, the muscle loss, cachexia, and the weakness. We hear about the methods of comfort care he employs to address the most common adverse symptom of dehydration in the dying: dry mouth. Those who have seen the film often express their surprise at Dr. Miller’s still frequent trips to the bathroom days into his fast, emphasizing the fact that abstaining from fluids doesn’t preclude urination. The body still needs to eliminate waste.

Dr. Miller wanted to highlight the common physical benefits of dehydration at the end of a terminal illness—the release of endorphins providing natural analgesia, reduced edema and pain from fluid-filled tumors, and fewer secretions, to name a few. His goal was to dispel myths of protracted pain and anguish due to thirst. At no point does Dr. Miller complain of either thirst or hunger. Indeed, it becomes clear cancer took away his hunger, months before he signed on to hospice. Reduced appetite, then, is seen as a natural part of the dying process, as the body begins to shut down.

Ultimately, Dying Wish provides a window on the dying process, demystifying it for the many whose only experience of death is as a chaotic, tragic event or as a medical emergency. Perhaps the most profoundly touching scenes are those in which he takes leave of his family, reflecting on his life and the nature of his leaving, turning the period of his dying into a meaningful rite of passage.

Dying Wish addresses far more than what it means to refuse food and fluids at the end of life. As an educational tool, it invites discussion about existential and psycho-spiritual questions such as the nature of a “good death” and what it means to be “ready to die?” I sought out bioethicists who could comment on these issues, and share their own experiences with patients who had made similar choices.

Dying Wish makes it clear patients have a right to stop eating and drinking at the end of their life. Dr. Miller’s own advanced directives emphasized quality of life. He was determined to avoid the indignity his 102 year-old mother faced at the end of her life when nursing home staff cajoled her into eating against her will.

Among the general public, Dying Wish has opened hearts and minds to a subject that, in our society, still does not bear thinking about. Audiences who’ve seen Dying Wish are often incredulous that patients can exercise such control over the circumstances surrounding their death.  

Clearly, as a medical man, it could be said that Dr. Miller had a need to control his death. But, equally, he had a desire to approach it with a degree of consciousness that assumed acceptance of the inevitable course of nature. Physicians who’ve seen the film, have commented Dr. Miller made them feel more comfortable about their own deaths. End-of-life professionals have used it with patients to broach sensitive issues that may be more easily aired through the less personal medium of a documentary film.

Dying Wish was screened at film festivals around the country and featured twice at the clinical conference of the National Hospice and Palliative Care Organization.

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