The Floripa cabin is located on the north of the island, overlooking rough but crystal clear waters and a fine white sand beach. Jaime settled in the island 30 years ago, where he decided to base his visual arts studio, and later on, built his recycled View full post on Inhabitat – Green Design, Innovation, Architecture, Green BuildingEco funeral – Inhabitat – Green Design, Innovation, Architecture, Green Building
This is a report from last Friday’s Maine House Committee Hearing on LD1270 – An Act Regarding Patient Self-Directed Care at End-of-Life by our long-time supporter, Valerie Lovelace.
Val is the executive director of the nonprofit It’s My Death, which she founded to honor a promise to her sister Dee, dying of cancer, “to teach others how to be with dying, how to speak and listen to one another the way we had learned to speak and listen, and how to go on even when afraid.” She is an inter-faith minister, ordained by calling, studying and practicing in the traditions of her elders and teachers, who are Native American, Christian, and Buddhist. She is a hospice volunteer, artist, and the parent of three adult children. She is also a homeopathic practitioner and a Reiki Master, retired from the U.S. Navy, and a trained EMT. She lives in Maine.
Maine’s Motto is “Dirigo” or “I Direct” or “I Lead” and its tagline “The Way Life Should Be.” I’m proud of how hard my legislators work to ensure our laws are fair, straight forward, and seek to ensure as much freedom as possible. It’s a balancing act, for sure. What I love about the process is that at the end of the day, when a piece of legislation is enacted, it’s been hammered over to produce the best and safest possible piece of legislation.
Attending the First Hearing for LD1270
Maine’s LD1270, An Act Regarding Patient Self-Directed Care at End-of-Life, enjoyed its first public hearing on Friday, May 15, 2015, in Augusta before the Joint Standing Committee for Health and Human Services. The bill, sponsored by Senator Roger Katz and co-sponsored by nine others, is closely modeled on Vermont’s Act 39, Patient Choice and Control at End of Life.
I was excited to go to the hearing for a number of reasons.
- Foremost, I am committed to the needs of dying people and believe our dying is the most intimate event we will ever experience – our final act of living. As such, I hold it sacred to the individual.
- Secondly, it was my first time to the State House and first time being an actual participant in the legislative process as a concerned citizen.
- Finally, the bonus for me is that it was my birthday.
Legal, Professional, and Emotional Testimonies
It was a rare gift, indeed, to hear testimony after testimony regarding the need for a safe, legal end-of-life prescription process in Maine. Senator Katz spoke eloquently about the bill and what it offers, what it safeguards, and how it addresses concerns generally voiced in opposition. He was followed by a number of co-sponsors who also testified, some with profoundly personal stories of loss. Following that testimony, citizens had three minutes each to speak for, against, or neither-for-or-against the bill.
Supporters came forward with both professional and deeply moving personal stories, demonstrating a clear understanding of the bill. Voices in support, voices in opposition, voices offering neither for-or-against critiques: all heard, all noted, and all to be taken into working session.
I spoke briefly and submitted written testimony. My feeling is that the personal stories and experiences of all who came to support LD1270 sent a clear, unified message to our legislators: “Dirigo.” The way life (and the end of life) should be: self-directed.
Next Steps for Maine’s Death with Dignity Bill
I’m awestruck by the enormity of the task that lay ahead for this committee, who will enter working session for the bill on May 22, 2015. They will read mountains of testimony, research key points they want to understand better, dig into the legislative workings of the bill, challenge whether safeguards are reasonable, whether choice is reasonable, and whether, in the grand scheme of our living and dying, it makes good sense to embrace this end-of-life option for Maine.
I trust the process. Each of these legislators, I believe, will do their best to comprehend the bill, learn about end-of-life prescriptions and how LD1270 proposes to make that a safe process for competent, terminally ill adults who want to choose an end-of-life prescription to use as their death becomes more imminent.
We here in Maine took a good first step.
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Joan Rivers—love her or hate her—was a larger than life personality. She bucked the notion that women can’t be funny and paved the way for many other female comedians to step into the limelight. Tina Fey, a comedy superstar in her own right, reflected on Rivers’ influence recently in an interview during the Toronto Film Festival, “Whether that was her intention or not she definitely opened doors for other women in comedy.”
Rivers saw no topic as taboo, and contrary to many Americans, she spoke quite openly about death, dying, and what she wanted for her funeral as she did in this recording:
When I die (and yes, Melissa, that day will come; and yes, Melissa, everything’s in your name), I want my funeral to be a huge showbiz affair with lights, cameras, and action…I want Craft services, I want paparazzi and I want publicists making a scene! I want it to be Hollywood all the way. Don’t give me some Rabbi mumbling on; I want Meryl Streep crying, in five different accents. I want to look gorgeous, better dead than I do alive. I want to be buried in a Valentino gown and I want Harry Winston to make me a toe tag. And I want a wind machine so strong that even in the casket, my hair will be blowing more than Beyonce’s on stage.
But perhaps the most touching video I’ve seen is of Ms. Rivers’ heart-to-heart conversation about her own death with her daughter (watch the video below). It’s a video which was filmed for Joan Knows Best when she was prepping for a surgery in 2011. The clipboard in her hands likely had her medical forms and advance directive on it. She started the conversation off with a very typical phrase, “If anything happens,” and then launched right into what she hoped for her survivors. She expressed things that people often don’t unless they’ve realized they’re dying in the near term.
I’m personally not a fan of reality TV, but the moment she and her daughter shared on camera in a frank discussion about death is one many people could benefit from watching. It’s hard to talk about one’s own death and your hopes for people who live longer than you. It’s difficult to figure out how to even start these conversations.
We could all take a lesson from the irrepressible Joan Rivers. Start off with a humorous anecdote about what you want for your funeral even if it’s over the top. Blurt out a segue about dying. Whatever you do, get these conversations rolling!
To live how you want up until your death, you need to make sure those around you know your values, your fears, and what is and isn’t acceptable to your way of life. And, not least of all, document your wishes in a printed advance directive or an online universal directive. You know best what you want for your end-of-life care and how you hope people will celebrate your life after you’ve died. Don’t waste a minute more; tell those around you. After all, you won’t live forever.
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Irina Jordan was born and raised in Russia and moved to the US when she was 22 years old. She’s the owner of Artisurn—online marketplace of handcrafted cremation urns, jewelry and keepsakes. Connector. Optimist. Avid reader.
My paternal grandmother, Grunya, had a stroke which paralyzed the left half of her body when she was 59 years old. She spent her entire life living in a village in the far east area of Russia raising her own chickens, milking her own cows, and planting her own fruits and vegetables. After her stroke, she had to leave her rural life behind and move in with us.
We lived in Khabarovsk, a big city by Amur River on the east side of Russia. I was 10 years old. In Russia, it’s expected children take care of their aging parents and not place them in any kind of assisted living facilities.
I became my mother’s helper: helping feed my grandma, get her around, make her bed, do her laundry and monitor her medications. My grandma lived with us for 5 years until she died at the age of 64.
As a child, I was resentful of her from time to time and even sometimes impatient with her; it takes an emotional and physical toll to have someone dependent on you, especially if you’re still a child. I had an active academic and social life with many school and extracurricular activities. It was especially taxing towards the end of her life when she was losing her appetite and confined to bed.
Looking back, I realize I had caregiver burnout and didn’t have resources or—other than my parents, who were in it with me—a support network to provide some assistance or talk things over. Based on my and my family’s experience, I highly recommend seeking out support groups and available local resources as soon as you become a caregiver for a family member or friend, and be mindful not to place a lot of burden on your young children as you take on the additional responsibility.
It’s important to remember it isn’t selfish to focus on your own needs and desires when you’re taking care of someone dear to you. You’re responsible for taking care of yourself too. I recommend learning and practicing stress-reducing techniques like meditation or deep breathing. It’s essential to get proper nutrition, sleep and exercise when taking care of someone. Don’t neglect your own health; see your physician regularly and not as an afterthought. Seek out counseling and support groups and accept help from others. Find and participate in activities you enjoy doing. You need to have a life outside of your caregiving situation. Being a caregiver isn’t the only thing that defines who you are.
Most importantly, be realistic about how much of your time and yourself you can give. Set clear limits and communicate those limits to doctors, family members, and other people involved. Live your own life to the fullest and don’t feel guilty about it!
Looking back at my caregiving experience, I can say the positives outweighed the negatives. I felt a sense of accomplishment and growing independence of being able to take care of my grandmother. I felt a sense of belonging to my family and learned to appreciate the present. Lastly, and most importantly, I was able to take care of someone I loved and show my compassion where it mattered the most.
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“In all likelihood, with all the momentum built during the Vermont and Massachusetts efforts, the next states to achieve Death with Dignity policy reform will be in the movement’s current center of activity—New England.”
- Peg Sandeen, Executive Director
Death with Dignity National Center
American Society on Aging’s publication Aging Today.
Peg’s article in the November/December issue of Aging Today (and published online in January) offered a look at where the debate over end-of-life healthcare policy reform is heating up: the Northeast. Much of this is tied to the increased awareness and understanding of Death with Dignity laws resulting from the recent near victory in Massachusetts and last year’s historic achievement in Vermont.
Legislative sessions are back in full swing in most states, and already Death with Dignity bills are being proposed anew or carried over if they were still active. I track these bills throughout the year, and you can stay up-to-date by visiting our legislative tracking page.
- New Jersey Assemblyman Burzichelli reintroduced the proposed New Jersey Death with Dignity Act, and his counterparts in the State Senate reintroduced the matching bill for consideration in their chamber.
- New Hampshire representatives introduced a new bill emulating our model legislation, the Oregon Death with Dignity Act.
- Massachusetts lawmakers are keeping the conversation about Death with Dignity laws alive by carrying over the Death with Dignity bill introduced last year. The joint committee where it resides heard testimony about the bill in December.
These are fantastic steps toward advancing Death with Dignity laws! As Peg talked about in the Aging Today article, achieving end-of-life healthcare policy reform is a long journey accomplished with the help of many supporters. In the article Peg, explained the long road and critical grassroots organizing which led to victory in Vermont:
Vermont’s effort began in 2002 as a partnership between the Death with Dignity National Center and a group of grassroots activists. The local group, Patient Choices Vermont, evolved into a fully functioning organization capable of shepherding the bill into law. An active and engaged local group is part of the calculus necessary for success in enacting this type of legislation. Both Washington and Oregon, which have similar legislation, had a local group of concerned citizens committed to offering terminally ill patients a choice about the timing and manner of their impending deaths.
With momentum building on both coasts, it’s a matter of perseverance and time before all terminally ill Americans will have the option to control the manner and timing of their own deaths. With your support, we’ll be there every step of the way!
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Laura Saltman is a Host/Correspondent/TV Expert with over 14 years in the entertainment business. She has appeared on TV programs all over the dial including Access Hollywood, CNN’s Showbiz Tonight, E’s Chelsea Lately, CNN’s The Joy Behar Show and TV Guide’s Idol Chat and Fashion Team among others.
Her post originally appeared on her Access Hollywood blog, Dish of Salt.
While much of the world was mourning the 50th anniversary of the assassination of John F. Kennedy on Friday, I was mourning the loss of my brother, Jason, who died at age 47 from stomach cancer.
They died 50 years apart on the exact same day.
While one was a beloved world leader and public figure and the other a private young man, they shared one major thing in common—that they wanted to make our world a better place. Even as a kid in his schoolwork my brother quoted JFK’s “Nation of Immigrants” speech. My heart is broken at the loss of my brother but along the way he has taught me so much.
The things he learned in his life sometimes people never learn in their entire lifetimes. I’d like to believe his time on this earth was cut short not because cancer came knocking at his door but because he had learned everything we as human beings are meant to learn in this realm. I know wherever he is, he is going to continue his work healing the environment.
The lessons I have learned from him I would like to pass on in hopes that others will make a positive change in someone else’s life.
Never Be Afraid of Change:
My brother spent $100,000-plus going to college, then medical school and then started practicing optometry. As he got a few years into optometry, he decided he wasn’t really passionate about it. Other than the charitable works he did visiting third world countries and providing medical care to those in need, he began to dislike the profession and just knew it wasn’t his calling. His passion was the environment. So, with encouragement from his wife he “retired” from optometry and went back to school and obtained his master’s degree in environmental science and later became a teacher at a community college. He went from making about $100,000 a year to maybe $20,000… but he was 20,000 times happier.
Take Care of Mother Nature:
Imagine not using a paper towel ever to wipe your hands or clean up a mess. My brother and his wife believed in not abusing our natural resources as he knew they are increasingly in short supply. They used cloth napkins, grew most of their own vegetables, composted everything they ate and never, ever wasted food.
Turn Your TV’s and Computers Off!
I have spent my entire career watching television. I have always loved the medium because I love stories and characters. My brother, however, hasn’t owned a TV in over a decade. Instead, he chose to go out and travel the world and make his own stories. He read books, listened to the radio, played music, cooked, hiked, biked, kayaked and many other outdoor activities. He appreciated nature, the mountains, the ocean or just a simple creek. He knew nothing about social media. He kept in touch with friends by speaking to them on the telephone.
Soul Mates Do Exist:
Never were two people more meant for each other than my brother and his wife. They were the shining example of what it means to be a couple. Before he met her, he dated and dumped like Chandler Bing. “Big head! Big head! Big head,” I used to joke to him every time he would tell me about what was wrong with each girl (hopefully someone gets this “Friends” reference). Until he met his wife and knew instantaneously she was the one. They remained, as I used to joke to him, as “shmoopy” as they were when they met 11 years ago. Perhaps it’s because they met doing a selfless act—volunteering with Shoulder to Shoulder, a program that helps bring medical aide and educate medical staff in Honduras.
Be Selfless, Not Selfish:
Be it friends, family or strangers, so many people can use a helping hand and not just in times of tragedy or despair. A woman at the chemotherapy office where my brother went lost a sister to cancer. Every week since she has died, she stops by the cancer center to bring baked goods to the patients. My brother was a lover of music and played several instruments. The sicker he got, the less he could play. So his friends would stop by his house and play music for him for an hour or so. It’s incredible the healing power of music. The one item I took with me from his house after he passed was his acoustic guitar, which I will pass on to my son, who at nearly 3 years old is obsessed with guitars. Perhaps one day you will see him on “The Voice” (Cycle 42 or something like that!) using it one day! Blake Shelton and Adam Levine will still be the coaches, gray hair and all, I bet.
Life Can Change In An Instant:
We have all heard this one thousands of times during times of tragedy that don’t befall on our own lives. Unfortunately, it’s a lesson each person can only learn when it happens to them. Most of us live our lives as if the next day is guaranteed, but trust me it is not. I didn’t get it either. I find myself now wanting to go back to every friend and/or co-worker who ever lost a loved one before their time and apologize and hug them for not comforting them more than I did. As a friend who lost her dad said to me the other day, “It’s a club you don’t understand until you arrive.”
Money, Fame & Power Mean Nothing If You Don’t Have Your Health:
You can have all the money in the world, be the most powerful person at your job, sell millions of records or bring in huge box office dollars, but if cancer or some other terminal disease comes knocking at your door, it all means nothing. You are not invincible. No one is. I remember reading an article about Pierce Brosnan’s daughter, Charlotte, who died of ovarian cancer at age 41. When she was diagnosed, he said he went crazy calling in every favor, finding her the very best doctors money could buy. Yet, despite all that, she still lost her battle with cancer. When my brother was diagnosed, I used every contact I have in the industry by calling every medical correspondent I know at NBC, ABC and CBS to make sure they put me in touch with the best doctors in Boston and NYC. They were the tops in the field and they made time for my brother, but they both told him the same thing the first doctor did. His cancer was incurable. The chemotherapy would only help for a little while. There were no clinical trials, no magic elixirs to heal him that any amount of money could buy.
Eat Simple/Live Simple:
I’ve always been a healthy eater but my brother was the first person who woke me up to all the truly nasty things that get put into processed foods. He always ate organic and chose real food. He introduced me to a great book that pretty much says it all as simple as it can be called “Food Rules.” He also shunned materialistic things and chose to surround himself in his home with mementos of his world travels rather than expensive things. He hardly ever bought new clothes, didn’t replace things until they were broken beyond repair and still has the same car, my old car I gave him 10 years ago.
I never made it in time to say goodbye to my brother (despite rushing as fast as I could across the country with my parents to get to him) because although he was to be the first person in Vermont to use the newly passed Death with Dignity Act, he passed away in the night on his own. It’s a cause he very much believed in, but I think ultimately this is how he wanted it… for his family not to see him when he was dying, but instead to remember him as he lived. The last time I saw him was a few weeks ago and he said to me “I don’t want cancer to be the thing that defines me.” It’s not. What defines my brother was that he was an incredible human being whose legacy is that he made everyone around him want to be a better person.
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You may recall, we celebrated recently the addition of long-time Oregon Death with Dignity Act expert George Eighmey to our board. George’s presence has strengthened our expertise in the areas of implementation and community-building, and we’re already feeling the positive impacts of his involvement.
Along with the celebration of additions to our board, though, we must celebrate those individuals who are moving off of our board. Three individuals who’ve made tremendous contributions to the Death with Dignity movement are leaving our board at this end-of-year transition time.
Betty Rollin, who at her last board meeting recounted 17 years of service to the National Center, is one of our organization’s longest serving board members. Betty came to the movement after her mother’s cancer diagnosis and death, writing about it in the book, Last Wish. Betty’s personal experience and passion for the movement have been the driving force behind countless hours of volunteer work on behalf of the National Center and multiple public presentations to raise awareness about this important issue.
Betty’s written three other books, and she was a correspondent for NBC News. Currently, she’s a contributor to the PBS show, Religion and Ethics News Weekly.
Alan Meisel’s a professor of law and bioethics at the University of Pittsburgh, and he’s the founder and current director of the University’s Center for Bioethics and Health Law. He’s recognized as a leading national authority on end-of-life decision making, and is widely published in the area.
I came to know Alan as a resource for clear and concise writing on the topic of Death with Dignity when I was first named an Executive Director of the organization eight years ago. Alan’s published works became my preferred go-to resource for easily understandable and succinct explanations for issues related to end-of-life care. Alan’s quiet contributions have impacted scores of scholars like me who are grappling with the complexities of decision making for terminally ill individuals.
Dan Gregorie is a physician, trained in Massachusetts, who was the chairperson of the Massachusetts Death with Dignity political campaign in 2012. Like Betty, Dan came to the movement because of personal experiences, and his role as a physician dedicated to patient choice and autonomy helped the Massachusetts campaign build critical partnerships with physicians.
Dan’s tenure with movement isn’t as long as Betty’s and Alan’s, but we anticipate many productive years of working together in the future.
On behalf of the board, volunteers and staff members of the National Center, I thank Betty, Alan, and Dan for their years of service to our organization and the Death with Dignity movement.
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Dr. Katherine Morris was Cody Curtis’ surgical oncologist. They were both featured in the groundbreaking documentary, How to Die in Oregon. Dr. Morris is currently an Assistant Professor in Surgical Oncology at University of New Mexico, with clinical and research interests in Upper GI (stomach, liver, pancreas, etc) cancers.
I’m not a person who likes getting her picture taken. So, how I ended up in a documentary discussing the most difficult and emotionally laden decision I’ve ever made in my professional career still occasionally puzzles me. Voting for Oregon’s Death with Dignity law was a clear decision for me given the amount of respect I have for individual autonomy, and through my practice I’d learned how much people can suffer at the end of their lives. Even so, the decision to be a prescribing physician for a patient I was very attached to was incredibly difficult.
I had struggled through that decision process with the help of my family and friends when my patient introduced the idea of a documentary she was participating in about the process. She brought it up gently, saying, “Well…I’m being filmed and interviewed for a movie that is being made on the Death with Dignity law. The documentarian is a very nice young man—very respectful. He’s from Oregon, and his first film made it into Sundance! I’m sure he would love to have you bat your eyelashes for the camera…” (This last being a bit of an inside joke between two feminists.)
“Wow…I don’t know about that. I’m still reeling from this myself.”
“No problem—whatever is good for you—I can keep you entirely anonymous if you like. Would you like to just chat with him on the phone or by email? I can give him your contact info if you’re OK with that.”
“Interesting,” my heart thought.
“Hell no!” My brain thought.
“OK,” my mouth said.
I could’ve remained anonymous. No one would have ever known I was her prescribing doctor. The anonymity was attractive. The movie, however, was very important to my patient. She wanted the story to be told. I thought a considerable amount of time about participating and finally decided I could do a voice interview. We recorded for about two hours in May, when Cody was doing exceptionally well and I still had hopes she wouldn’t need the medication. This little bit of denial allowed me to think more clinically about the subject—it was easier to show the CT and PET scans and discuss the disease process and her clinical course. It was like I was explaining it to a family member of a patient, except this family member had what looked like a 35 pound camera on his shoulder, using it for sound recording only.
The next step down the path was filming her office visits when she came in for drain checks and assured me she was feeling as well as possible. Cody was the focus of these, and it seemed so important to her. I liked the documentary maker, Peter, and it was somewhat natural. I generally forgot he was there given the intensity of our discussions, except for the time I told the tale of my first time hosting Thanksgiving with my Mom and the in-laws while troubleshooting her drain. After sharing somewhat pointed humor about myself, my husband, the references to f-bombs, overly salted gravy, and disagreements between family members, I suddenly remembered the camera and blurted out, “this part better not land in the film.”
In the clinic appointments I was doing my job as a surgical oncologist—trying to help and support Cody and her family—so, it was much easier to be filmed. I still hadn’t committed to an actual on camera interview about my feelings on the subject. They were—and quite frankly, often still are—raw. I was very conscious of how little I knew from the philosophic and rigorous ethics standpoint. I hadn’t spent a lifetime focusing entirely on these issues like many people before me. I felt inadequate to talk about it, and I wasn’t inclined to show as much of my underbelly as it would take to discuss this in front of strangers who’d see the film.
By the time December arrived, Cody went into rapid decline. She decided to take the medications, dying at home, with her family around her, the icy wind and a large digital camera outside her room. Her and her family were beautiful in their love for each other. I was present when she took the medication and honored to be a part of her life. When she had drifted off to sleep, I drove home and hugged my cat, finally able to really cry about it. That was a Monday.
The following Saturday night my husband and I were watching the public access station. We’d only just started a cable subscription when TV went digital because the TV didn’t work without cable. Not wanting more excuses to sit on our backsides in front of the TV than we already had, we got the cheapest plan, leaving us with the major networks, PBS, three Spanish telenovela channels, and public access. Even with that meager selection, we were still sitting on our backsides in the living room. Channel flipping brought us to the Women’s Hour show, wherein a local religious lady had a couches and mugs format talk show with important people in her community. That Saturday, it happened to be one of my former medical school professors. A devout Catholic, very much in the full Roman tradition, this professor had caused controversy during my medical school days because he wasn’t willing to prescribe birth control.
He was discussing how sick our society was that it allowed a “very small group of doctors” to go around “making their living off prescribing lethal medications to vulnerable, suicidal patients.” The comments went on, and seemed to me increasingly hostile and entirely divorced from the process I’d just gone through with my patient. Although I had tears streaming down my face, I was angry. Fire spittin’ mad. My husband changed the channel, but I raged on. At that moment, I realized it was critical to tell my side of this story as well, even if it meant tearing up on camera, looking like Austen Powers in a wig.
Peter came over to our house a few days later, and we did my on camera interview, doing our best to not let the swirling cats make too much noise during the recording. I was a bit excited and moderately terrified when the movie came out and I learned HBO had picked it up. I worried about what my friends who disagreed with me on this subject would think. I worried about my patients, past, present, and future, whose religion so sustained them that I feared they wouldn’t feel comfortable with me after viewing the film. I recalled all too well the period of time when members of our OB/Gyn department were having their names and home addresses listed on the internet as people who “needed to be crossed out.” Mostly, however, I was scared of being misunderstood; terrified people would mistake my desire to honor a patient’s decision with a disrespect for the force of life I spent so many hours of my life trying to support.
When I saw the rough cut of the film and heard Nancy Niedzielski’s story for the first time, I knew I’d made the right decision. Her bravery was so huge and heroic compared to my fears that I took courage from it and became a little bit proud of not silencing myself—even if I couldn’t be perfectly composed and eloquent about speaking my mind.
Since then, I’ve seen the film many times, generally through tears. Cody is so alive in the movie and I miss her. In addition to the sadness, however, is the growing knowledge of how eloquently she crafted her message, turning her part in the documentary into a kind of love letter to the planet and people she was leaving.
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Nancy Niedzielski worked tirelessly in Washington to advocate for the state’s Death with Dignity Act which voters approved in 2008. Her efforts were documented in the groundbreaking documentary How to Die in Oregon which was honored at film festivals all over the world and was recently nominated for an Emmy Award. Documentary award winners will be announced October 1, 2012.
When it was announced the documentary How To Die In Oregon was nominated for an Emmy, memories of the Washington campaign to pass the second Death with Dignity law, flooded my mind. The documentary placed a bookmark at a historical event for people around the world to see. And see it they did with an outpouring of love and support for those who dedicate time and money to ensure terminally-ill patients have a choice in their dying pain. Film Festivals around the world honored the documentary with awards, which for my way of thinking, honors the patients. My husband suffered in his dying, and the Oregon Death With Dignity Act couldn’t help him.
I first met filmmaker Peter Richardson during our Washington state campaign. He heard about my husband who had the opposite experience of others featured in his documentary. At 55, Randy was diagnosed with brain cancer that metastasized to his spinal cord and nervous system. Randy had some decent years but his death was long, ugly, and painful. When Randy entered hospice, only Oregon had a Death with Dignity Law. He was desperately envious of Oregon’s law. Being a member of a Brain Tumor Support Group, we knew the kind of death he would endure as we watched those we loved die horribly.
With no option but to suffer an agonizing death, Randy begged me to change what he felt was a cruel system under which the government insisted terminally-ill patients had to suffer and couldn’t seek assistance in dying. Randy asked me to promise I would change the law in Washington so terminally-ill patients had a choice—one he didn’t get. I promised him. But how? You promise anything to someone you adore as they lay dying.
After Randy’s death, I agonized about that promise. I searched for a way to fulfill it. In that search I came across the non-profit organization, Compassion and Choices of Washington. I was led down a campaign path that provided the opportunity to keep my promise to Randy. It became my full time commitment. I was willing to do anything and everything to keep that final promise to Randy.
On that journey, I marveled that just as it takes a village to raise children well, so also does it take a village to pass a Death with Dignity Law. I met hundreds of donors dedicating money so terminally-ill patients would have a choice in their dying pain. It takes a lot of money to educate the public about a new law and counteract lies perpetuated by the opposition. I met hundreds of volunteers committing countless hours in memory of a loved one or ones who just felt this was the compassionate thing to do for those who share your village. I met thousands of voters who understood this law doesn’t force any belief on anyone. No one has to use it. It just offers another medical option.
When I first watched How To Die In Oregon with Peter Richardson in the safety net of my home, my reaction was one of both sorrow and anger. I felt sorrow for those in the film who, like me, grieved a loved one. Alongside that sorrow sat anger that Randy suffered in a way the patients in the film didn’t. The peace and comfort they experienced in the final days leading up to death because they had a choice was something Randy craved and begged to have. I mentioned the anger to a friend who responded, “That’s why you worked so hard to pass the Death with Dignity law. Now, no terminally-ill patient in Washington will have to suffer like Randy did.” My anger melted away as a promise kept was recognized.
At a showing of the film, I met a man whose wife used the Washington Law. He expressed gratitude for her peaceful death. How odd it was to hear the words gratitude and death together. He said the law was a legacy to Randy. Knowing that because of the law, his wife’s death left him with less haunting memories than Randy’s did for me, I felt comforted. Randy was kind, gentle and caring. He would be the first to say if his suffering in dying meant others had a choice he didn’t get, then it was worth it. None of us know for certain what our death will be like or whether we’d want to use this end-of-life option. One thing I do know for certain: I want a choice.
As I write this, I’m on a plane to the funeral of Randy’s sister-in-law. She died too young of cancer. Fortunately her suffering was managed by hospice; for that I’m grateful. Randy wasn’t as fortunate. Not all dying pain is manageable. There is no guarantee any of us will leave this world peacefully, free of pain, surrounded by loved ones. This law brings terminally-ill patients closer to that possibility.
The intimacy with which the documentary shows why patients choose this option is told better than I ever can. I will always be grateful to filmmaker Peter Richardson and editor Greg Snider for their respectful approach. They educated the world on why advances in medicine that keep people alive longer need to be balanced with the choice to end one’s pain in dying. The Oregon and Washington Death with Dignity Acts change the deaths of terminally-ill patients and in so doing change their lives and the lives of their families for the good. I will always be grateful for being able to meet so many wonderful people who work tirelessly for others so they have this choice. They have changed my life for the good.
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to hear more, go to: writing.upenn.edu Tad Friend reads from his memoir “Cheerful Money: Me, My Family, and the Last Days of Wasp Splendor” at the Kelly Writers House on January 20, 2010. Tad Friend is the author of the memoir Cheerful Money: Me, My Family, and the Last Days of Wasp Splendor (2009, Little, Brown and Company), which came out in September, and Lost in Mongolia: Travels in Hollywood and Other Foreign Lands (2001, AtRandom), a collection of his articles. He has been a staff writer at The New Yorker since 1998, and writes the magazine’s “Letter from California.” Mr Friend’s recent pieces have included articles about Hollywood’s marketing tricks, the electric-car and rocket-ship entrepreneur Elon Musk, the man in charge of executions at San Quentin, and the man who hopes to introduce “green burial” to American cemeteries. He has also written profiles of William Morris agent David Wirtschafter, screenwriter Ron Bass, and San Francisco mayor Gavin Newsom. His article on suicides at the Golden Gate Bridge, “Jumpers,” inspired the song “Jumpers” by the band Sleater-Kinney, and was turned into a documentary film, “The Bridge.” His work has also appeared in The Best American Travel Writing, The Best American Sports Writing, and The Best American Crime Reporting. Mr. Friend is married to the New York Times food columnist Amanda Hesser. They live in Brooklyn with their young twins.