The Human Right To A Death With Dignity In This Issue

• Practical questions are met with silence Page 4 • ‘Will God be angry with me,’ Guide is asked 6 • Poll, survey ask about dementia, hastened death 8-9 • Canada goes where U.S. will not 11

• End-of-life doulas – a practical primer 12-13 • RTD news compendium 15

Vol 20 • No 2 Spring 2021 A FEN experience comes full circle She sat on a jury, told her family about it – 10 years later, her mother chose to exit By Shana Morales members and declared My name is Shana a “hung jury” on the Morales, and in 2011, I second defendant. was called to be a juror for It was traumatic a case regarding Final Exit for me as a juror, and Network in Phoenix. The I cannot imagine what trial lasted months, and at it was like for those the end, the jury room was directly involved. not a good place to be. During the trial, I Some of the jury told my family members felt very strongly about about Final Exit suicide, assisted or other- Network, and my mother wise, and were unable seemed to take a special to detach their personal interest – but she was beliefs from facts in front healthy, and I thought of them. I, while not a nothing of it. proponent of suicide by Fast forward to 2018 any means, viewed it more when “Papa Bob,” the as an issue of sharing love of my mother’s life, knowledge – then it “Papa Bob” and Shana’s mother, Marianne, surrounded started to decline due to becomes personal choice. by the Morales family (l-r): sisters Elena and Ashley, heart issues and COPD. In the end, we were son Joey, husband Joseph, and Shana. The photo was The last months of Bob’s taken in 2017 before Bob became seriously ill. able to acquit one FEN life were extremely defendant, and then it got really bad. A juror painful for both him and my mother, he in was seen crying in the hallway (that was me) obvious physical distress, and her having to after the judge heard loud yelling from several FULL CIRCLE continued on page 2 Renew your membership online: www.finalexitnetwork.org mother in it, and I am going to aspire to make it It is a very hard personal choice and something to FULL CIRCLE continued from page 1 The Phoenix FEN trial brighter in her memory. be honored – as I honor my mother today. watch him go in and out of hospitals, struggling to To any children of FEN members, I offer you this: FEN’s Arizona court case was in April 2011 and involved Nobody wants to think about losing a parent, or any Editor’s note: Unknown to Shana, her mother, and breathe, knowing that there was nothing she could do the 2007 exit of Jana Van Voorhis. to ease his suffering. Before trial, two defendants pleaded guilty to minor loved one, for that matter, but the ultimate display of her daughter, there is no law that prohibits someone After Papa passed, Mom admitted to becoming misdemeanors – in exchange for the state’s dropping felony gratitude and love we can show them is accepting their from being present at a planned death in Arizona. obsessed with controlling her own death and started charges of aiding in a suicide and for testifying against FEN’s wishes, even if they may not be ours. When she heard that (while preparing this article), to attend local FEN chapter meetings. She was the medical director, Dr. Lawrence Egbert, and Exit Guide Frank Our parents bring us into this world, love us, Shana was shaken. She could have been with Mom. Langsner. amazing lady with great baking skills who thought it provide us with our foundations for everything, and However, anyone present at a self-deliverence runs the The jury acquitted Egbert but could not agree on we cannot ask for more. Tell them what you need to risk of being falsely accused of assisting in the death, was fitting to bring her “death by chocolate” cake to Langsner, prompting a mistrial. Before his retrial, Langsner the gatherings. accepted a plea bargain on one count of misdemeanor say now, apologize, forgive, and be okay knowing that even experienced Exit Guides. Mom never applied to the Exit Guide Program. endangement, and he received a year’s probation. it’s not about you or anything you did or didn’t do.  She read up on self-deliverance and researched to “do Each of the three FEN guilty pleas was to a single, it herself.” minor misdemeanor. She purchased a nitrogen tank and let the family Spain gives approval to euthanasia know that when it was her time, she would not be challenge, that erased her quality of life. entering hospitals or hospice – but instead would take I learned afterward that Mom had cleaned out most As expected, in March Spain joined three other The new law will allow chronically ill people to her life at a time of her choosing. of her house, with instructions to give to those in need European countries (Belgium, Luxembourg, and the end their lives in two different ways, differentiating what was left. Netherlands) in legalizing euthanasia and Medical Aid between euthanasia and MAiD. My daughter found Papa’s picture turned She had called her granddaughter, my oldest in Dying (MAiD). The latter is when a person is capable of under- toward the chair where Mom sat – so his was daughter, to let her know she was ready. She asked Moments after the vote, which passed 202-140, taking the act themselves. However, euthanasia refers the last face she saw. Ashley to phone at a designated time, to make sure Spanish Prime Minister Pedro Sánchez tweeted, to intentionally ending another one’s life. it had gone as planned. If there was no answer, she “Today we have become a country that is more To qualify, an applicant must be a Spanish national My family is Catholic, so this was a tough pill to would call a neighbor. When the neighbor didn’t humane, fairer and freer. The euthanasia law, widely or legal resident who is “fully aware and conscious” swallow, but anyone who ever met my mother knows answer, Ashley drove to the house, found my mother demanded by society, has finally become a reality.” when they make the request, which must be made that she did everything with careful consideration. She and phoned me. To pass the law, Sánchez’s Socialist Party sought twice in writing 15 days apart. told me that my uncle, her older brother, even said to My daughter found Papa’s picture turned toward help from other parties, despite pushbacks from right- Doctors will only consider patients who are living her, “I don’t understand, Marianne, but I know you and the chair where Mom sat – so his was the last face she wing lawmakers who have vowed to overturn the with a “serious or incurable disease” or a “chronic I love you, and I respect your wishes.” saw. A grief counselor got to the house along with the ruling at the first opportunity. or incapacitating” condition that causes “intolerable I must admit, at first I freaked out! Who wants authorities. She heard everything we said about my The bill was first introduced into the Spanish suffering.” their mother telling them she will be ending her life mother, and said she sounded like a spectacular lady parliament three years ago and has since undergone Anyone who applies has the right to withdraw at sometime in the future? But, as time went by, she who did things her way. extensive revisions by committees and in the senate. any time. became more committed, having a necklace and jacket We actually educated the counselor and a couple made that said: “My life, my death, my choice.” of others about Final Exit Network, though FEN was I assumed it would be not involved in her death. Happy b’day! Bestseller turns 30 – not ready to exit many years before I would Derek Humphry’s bestselling book Final Exit published it myself. need to deal with losing The selfish part of me wants more time. The selfish turned 30 in February. In updated versions, it still sells “Then an article about the book in the Wall Street her. However, my mother – part of me wants to talk to my mother once more, hug modestly around the world every day. Journal launched sales of 100,000 a week. I was the most extraordinary her once more – but in my mind, I know there would When published in 1991, it reached the New York amazed.” person I ever met – exited always be another wish for “once more.” Times book list as #1 and remained listed for 18 weeks. Exactly how many copies have been sold is on her own terms in her I take great peace in knowing my mother thought Final Exit became infamous as “the suicide difficult to estimate because of translations, internet home on Saturday, Jan. 30. about this in great detail, made the choice with a clear guide,” but author Humphry pointed to its sub-title E-books, audio versions, and it is a much-pirated She was 73. head, and was able to carry it out 100 percent the way and content as clearly being for the terminally and publication. Humphry estimates the total copies to be She had developed she wanted. hopelessly ill, not for the depressed. “around 2 million.” severe allergies that affected My only regret about it all is that she was not It has been translated into 12 major languages and Over 50 years, he has published 13 books. The her ability to breathe. But, able to have someone by her side due to Arizona law, is available in most major libraries. only other top seller was Jean’s Way (1978), the for all appearances, she and she knew that. We would have been there in her “When I wrote this book in 1990, on sabbatical response to which inspired him to found the Hemlock seemed healthy. I think last moments, but she – even in her last days – was from the Hemlock Society, I aimed it at members of Society USA (1980-2003). it was her emotional loss Bob and Shana’s mother, about concerned about others, true to form. that organization,” Humphry said. “My literary agent Final Exit E-book and paperback are available at of Bob, not a physical eight years before he died. The world is a little darker place without my tried to get publishers interested, but none was. So, I https://www.finalexit.org/ergo-store.

2 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 3 mother in it, and I am going to aspire to make it It is a very hard personal choice and something to FULL CIRCLE continued from page 1 The Phoenix FEN trial brighter in her memory. be honored – as I honor my mother today. watch him go in and out of hospitals, struggling to To any children of FEN members, I offer you this: FEN’s Arizona court case was in April 2011 and involved Nobody wants to think about losing a parent, or any Editor’s note: Unknown to Shana, her mother, and breathe, knowing that there was nothing she could do the 2007 exit of Jana Van Voorhis. to ease his suffering. Before trial, two defendants pleaded guilty to minor loved one, for that matter, but the ultimate display of her daughter, there is no law that prohibits someone After Papa passed, Mom admitted to becoming misdemeanors – in exchange for the state’s dropping felony gratitude and love we can show them is accepting their from being present at a planned death in Arizona. obsessed with controlling her own death and started charges of aiding in a suicide and for testifying against FEN’s wishes, even if they may not be ours. When she heard that (while preparing this article), to attend local FEN chapter meetings. She was the medical director, Dr. Lawrence Egbert, and Exit Guide Frank Our parents bring us into this world, love us, Shana was shaken. She could have been with Mom. Langsner. amazing lady with great baking skills who thought it provide us with our foundations for everything, and However, anyone present at a self-deliverence runs the The jury acquitted Egbert but could not agree on we cannot ask for more. Tell them what you need to risk of being falsely accused of assisting in the death, was fitting to bring her “death by chocolate” cake to Langsner, prompting a mistrial. Before his retrial, Langsner the gatherings. accepted a plea bargain on one count of misdemeanor say now, apologize, forgive, and be okay knowing that even experienced Exit Guides. Mom never applied to the Exit Guide Program. endangement, and he received a year’s probation. it’s not about you or anything you did or didn’t do.  She read up on self-deliverance and researched to “do Each of the three FEN guilty pleas was to a single, it herself.” minor misdemeanor. She purchased a nitrogen tank and let the family Spain gives approval to euthanasia know that when it was her time, she would not be challenge, that erased her quality of life. entering hospitals or hospice – but instead would take I learned afterward that Mom had cleaned out most As expected, in March Spain joined three other The new law will allow chronically ill people to her life at a time of her choosing. of her house, with instructions to give to those in need European countries (Belgium, Luxembourg, and the end their lives in two different ways, differentiating what was left. Netherlands) in legalizing euthanasia and Medical Aid between euthanasia and MAiD. My daughter found Papa’s picture turned She had called her granddaughter, my oldest in Dying (MAiD). The latter is when a person is capable of under- toward the chair where Mom sat – so his was daughter, to let her know she was ready. She asked Moments after the vote, which passed 202-140, taking the act themselves. However, euthanasia refers the last face she saw. Ashley to phone at a designated time, to make sure Spanish Prime Minister Pedro Sánchez tweeted, to intentionally ending another one’s life. it had gone as planned. If there was no answer, she “Today we have become a country that is more To qualify, an applicant must be a Spanish national My family is Catholic, so this was a tough pill to would call a neighbor. When the neighbor didn’t humane, fairer and freer. The euthanasia law, widely or legal resident who is “fully aware and conscious” swallow, but anyone who ever met my mother knows answer, Ashley drove to the house, found my mother demanded by society, has finally become a reality.” when they make the request, which must be made that she did everything with careful consideration. She and phoned me. To pass the law, Sánchez’s Socialist Party sought twice in writing 15 days apart. told me that my uncle, her older brother, even said to My daughter found Papa’s picture turned toward help from other parties, despite pushbacks from right- Doctors will only consider patients who are living her, “I don’t understand, Marianne, but I know you and the chair where Mom sat – so his was the last face she wing lawmakers who have vowed to overturn the with a “serious or incurable disease” or a “chronic I love you, and I respect your wishes.” saw. A grief counselor got to the house along with the ruling at the first opportunity. or incapacitating” condition that causes “intolerable I must admit, at first I freaked out! Who wants authorities. She heard everything we said about my The bill was first introduced into the Spanish suffering.” their mother telling them she will be ending her life mother, and said she sounded like a spectacular lady parliament three years ago and has since undergone Anyone who applies has the right to withdraw at sometime in the future? But, as time went by, she who did things her way. extensive revisions by committees and in the senate. any time. became more committed, having a necklace and jacket We actually educated the counselor and a couple made that said: “My life, my death, my choice.” of others about Final Exit Network, though FEN was I assumed it would be not involved in her death. Happy b’day! Bestseller turns 30 – not ready to exit many years before I would Derek Humphry’s bestselling book Final Exit published it myself. need to deal with losing The selfish part of me wants more time. The selfish turned 30 in February. In updated versions, it still sells “Then an article about the book in the Wall Street her. However, my mother – part of me wants to talk to my mother once more, hug modestly around the world every day. Journal launched sales of 100,000 a week. I was the most extraordinary her once more – but in my mind, I know there would When published in 1991, it reached the New York amazed.” person I ever met – exited always be another wish for “once more.” Times book list as #1 and remained listed for 18 weeks. Exactly how many copies have been sold is on her own terms in her I take great peace in knowing my mother thought Final Exit became infamous as “the suicide difficult to estimate because of translations, internet home on Saturday, Jan. 30. about this in great detail, made the choice with a clear guide,” but author Humphry pointed to its sub-title E-books, audio versions, and it is a much-pirated She was 73. head, and was able to carry it out 100 percent the way and content as clearly being for the terminally and publication. Humphry estimates the total copies to be She had developed she wanted. hopelessly ill, not for the depressed. “around 2 million.” severe allergies that affected My only regret about it all is that she was not It has been translated into 12 major languages and Over 50 years, he has published 13 books. The her ability to breathe. But, able to have someone by her side due to Arizona law, is available in most major libraries. only other top seller was Jean’s Way (1978), the for all appearances, she and she knew that. We would have been there in her “When I wrote this book in 1990, on sabbatical response to which inspired him to found the Hemlock seemed healthy. I think last moments, but she – even in her last days – was from the Hemlock Society, I aimed it at members of Society USA (1980-2003). it was her emotional loss Bob and Shana’s mother, about concerned about others, true to form. that organization,” Humphry said. “My literary agent Final Exit E-book and paperback are available at of Bob, not a physical eight years before he died. The world is a little darker place without my tried to get publishers interested, but none was. So, I https://www.finalexit.org/ergo-store.

2 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 3 fVision f Silence greets practical questions Any competent person unbearably suffering an intractable medical condition has the option – Personal stories can move the needle – to die legally and peacefully. From Executive Director Mary Ewert fMission f Educate qualified individuals in practical, This spring issue of the FEN magazine contains a potential fears dance peaceful ways to end their lives, powerful personal story by Shana Morales, the results around the real question. offer a compassionate bedside presence, of our national poll on attitudes toward dementia, and a She is asked if she fears and defend their right to choose. FEN survey examining reasons that people might want becoming incontinent. If Board of Directors to hasten death. so, she is told not to worry, because many people are Brian Ruder, President These stories intertwine in a powerful way to incontinent. Besides, she is asked, doesn’t trying to Ronald Liesemer, Acting VP demonstrate the desire of many to have control at the avoid it demean those who successfully live with it? Judy Snyderman, Treasurer Advisory Board end of life. Both the polling and the survey provide Similarly, her fear of losing intellectual capacity Kevin Bradley Derek Humphry, Chair evidence that some want more control than current might be misplaced, she is told, as some people in Janis Landis Linda J. Banez dementia seem quite happy. MAiD legislation allows. Both articles flag the Adam Rose Ruth von Fuchs question of how best to proceed: accept what laws we The physician’s ultimate suggestion appears to be Tom Tuxill, MD Faye Girsh can get, or push for what many of us want? that she should conquer her fear by accepting her fate. Gary Wederspahn Richard MacDonald, MD Ms. Morales’s mom showed the conviction of those Practical answers to her questions cannot be discussed. Final Exit Network Martin Seidenfeld who choose not to simply accept the way things are. In a more compassionate scenario, the woman PO Box 10071 Wendell Stephenson would be asked, “What options would you like?” Her Tallahassee, FL 32302 • 866-654-9156 President Emeritus Why do those who make the laws and response might be, “I want to have a quick, quiet death [email protected] distribute the drugs ignore our real questions? through euthanasia administered by someone with Executive Director Perhaps they fear the answers. experience. If I must leave time on the table to have Mary Ewert that, then so be it. I do not want to be demented and Join us on Facebook! We are forever grateful to those like Shana who step incontinent, full stop! Now posting to FEN’s Twitter Quarterly Magazine forward to share their experiences of death – deaths “That is my wish. It is not a critique of how anyone Jay Niver that are beautiful and those that are heart-wrenching. else deals with any medical condition. My wishes are account @FINALEXITNETWRK Personal stories are so important in securing our human mine alone, for me.” right to a death that is free of suffering, because they After my husband’s ALS diagnosis, he knew what break through the silence surrounding how we die, a he wanted, and that was a peaceful death before he silence that ignores our very practical questions. became totally incapacitated. He was not a religious – Some FEN Partners – In our prior magazine, I observed that many of us man, he did not believe in an afterlife, nor did he Final Exit Network is partnering with a growing number of organizations do not fear death, but we do fear dying in pain. Personal believe that suffering had positive value. dedicated to advancing end-of-life issues, discussions, and the right to choose how we die. stories make it difficult for listeners – be they healthcare What happened when he expressed this direct wish providers or legislators – to avoid speaking directly to to his physicians? His neurologist said he couldn’t our fear of dying in distress. Personal stories shine a talk about it. His hospice doctor said that, while he light on the ways that theoretical and ethical discussions understood, he couldn’t provide what Craig wanted. fail to answer our real, concrete questions about dying. My husband, the patient, was not heard by those Why do those who make the laws and distribute the who purported to be his caretaking team. His words drugs ignore our real questions? Perhaps they fear the were only truly heard by the aid-in-dying community, https://www.deathwithdignity.org 503-228-4415 answers. and only they offered the practical answers he sought. https://www.completedlife.org/ https://www.dyingrightnc.org/ 929-309-0353 Against the backdrop of FEN’s dementia poll, Please continue sharing your stories until we are 919-452-9092 let’s take as an example a woman with early dementia heard – really heard – and get the honest, practical who asks her physician about her options. The doctor answers to our questions about dying that we deserve. responds by discussing VSED (Voluntarily Stopping Send an email to ExecutiveDirector@finalexitnetwork. Eating and Drinking) and the difficulties it entails for a org if you have a personal story to share. physically healthy person. Exploration of the patient’s  https://daveoutloud.com • 952-856-0611 https://endoflifewa.org/ • 206-256-1636 4 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 5 fVision f Silence greets practical questions Any competent person unbearably suffering an intractable medical condition has the option – Personal stories can move the needle – to die legally and peacefully. From Executive Director Mary Ewert fMission f Educate qualified individuals in practical, This spring issue of the FEN magazine contains a potential fears dance peaceful ways to end their lives, powerful personal story by Shana Morales, the results around the real question. offer a compassionate bedside presence, of our national poll on attitudes toward dementia, and a She is asked if she fears and defend their right to choose. FEN survey examining reasons that people might want becoming incontinent. If Board of Directors to hasten death. so, she is told not to worry, because many people are Brian Ruder, President These stories intertwine in a powerful way to incontinent. Besides, she is asked, doesn’t trying to Ronald Liesemer, Acting VP demonstrate the desire of many to have control at the avoid it demean those who successfully live with it? Judy Snyderman, Treasurer Advisory Board end of life. Both the polling and the survey provide Similarly, her fear of losing intellectual capacity Kevin Bradley Derek Humphry, Chair evidence that some want more control than current might be misplaced, she is told, as some people in Janis Landis Linda J. Banez dementia seem quite happy. MAiD legislation allows. Both articles flag the Adam Rose Ruth von Fuchs question of how best to proceed: accept what laws we The physician’s ultimate suggestion appears to be Tom Tuxill, MD Faye Girsh can get, or push for what many of us want? that she should conquer her fear by accepting her fate. Gary Wederspahn Richard MacDonald, MD Ms. Morales’s mom showed the conviction of those Practical answers to her questions cannot be discussed. Final Exit Network Martin Seidenfeld who choose not to simply accept the way things are. In a more compassionate scenario, the woman PO Box 10071 Wendell Stephenson would be asked, “What options would you like?” Her Tallahassee, FL 32302 • 866-654-9156 President Emeritus Why do those who make the laws and response might be, “I want to have a quick, quiet death [email protected] distribute the drugs ignore our real questions? through euthanasia administered by someone with Executive Director Perhaps they fear the answers. experience. If I must leave time on the table to have Mary Ewert that, then so be it. I do not want to be demented and Join us on Facebook! We are forever grateful to those like Shana who step incontinent, full stop! Now posting to FEN’s Twitter Quarterly Magazine forward to share their experiences of death – deaths “That is my wish. It is not a critique of how anyone Jay Niver that are beautiful and those that are heart-wrenching. else deals with any medical condition. My wishes are account @FINALEXITNETWRK Personal stories are so important in securing our human mine alone, for me.” right to a death that is free of suffering, because they After my husband’s ALS diagnosis, he knew what break through the silence surrounding how we die, a he wanted, and that was a peaceful death before he silence that ignores our very practical questions. became totally incapacitated. He was not a religious – Some FEN Partners – In our prior magazine, I observed that many of us man, he did not believe in an afterlife, nor did he Final Exit Network is partnering with a growing number of organizations do not fear death, but we do fear dying in pain. Personal believe that suffering had positive value. dedicated to advancing end-of-life issues, discussions, and the right to choose how we die. stories make it difficult for listeners – be they healthcare What happened when he expressed this direct wish providers or legislators – to avoid speaking directly to to his physicians? His neurologist said he couldn’t our fear of dying in distress. Personal stories shine a talk about it. His hospice doctor said that, while he light on the ways that theoretical and ethical discussions understood, he couldn’t provide what Craig wanted. fail to answer our real, concrete questions about dying. My husband, the patient, was not heard by those Why do those who make the laws and distribute the who purported to be his caretaking team. His words drugs ignore our real questions? Perhaps they fear the were only truly heard by the aid-in-dying community, https://www.deathwithdignity.org 503-228-4415 answers. and only they offered the practical answers he sought. https://www.completedlife.org/ https://www.dyingrightnc.org/ 929-309-0353 Against the backdrop of FEN’s dementia poll, Please continue sharing your stories until we are 919-452-9092 let’s take as an example a woman with early dementia heard – really heard – and get the honest, practical who asks her physician about her options. The doctor answers to our questions about dying that we deserve. responds by discussing VSED (Voluntarily Stopping Send an email to ExecutiveDirector@finalexitnetwork. Eating and Drinking) and the difficulties it entails for a org if you have a personal story to share. physically healthy person. Exploration of the patient’s  https://daveoutloud.com • 952-856-0611 https://endoflifewa.org/ • 206-256-1636 4 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 5 way from Episcopal altar boy to lapsed Unitarian the kid and bring him home. That’s what happened in adult, so I felt I could handle this one using the scripture, so God can’t be angry with you. inspiration provided by Dr. Syme’s experience. “You have suffered all you can stand, and you Will God “Remember when Christ was on the cross,” I said. have cried out and your call has been heard, and there “He suffered for hours and finally asked if God had is a way prepared for you. forsaken him. After that, he cried out in a loud voice “Don’t be afraid. Go in peace, my friend.” and died and was taken into heaven. Remember?” I touched his arm and felt the tension leave his The old man nodded. body as he exhaled a deep breath and started the steps be angry “You are a father and so am I,” I told him. “I know that led to his peaceful departure. A decade-old that if one of my children was being tormented and I like to think he might have been thanking his remembrance cried out to me, I would move heaven and Earth to get Redeemer. I was thanking Dr. Syme. from a wise man  with me? provides the FEN expert lists qualities response An Exit Guide must answer at a crucial moment What makes a good surrogate? By Jay Niver, FEN Editor is usually not making any decisions, unless the directive By Dr. Jerry Metz, Former FEN Exit Guide Imagine! Instead of providing much- Althea Halchuck knows about death and dying, is not specific enough.” miss the good old days, including the annual needed consolation, this old man’s religion end-of-life options, and peoples’ varied, personal A surrogate need not be a mediator, she adds. Chicago get-togethers. Meeting the founders of wishes as their end approaches. Others are available to mediate, and there should was threatening him! FEN was an inspiration, and chatting with Dr. FEN’s surrogate consultant has exhaustive experi- never be negotiating anyway: “Whoever has power of LarryI Egbert, our first medical director, was fun. ence as a patient advocate, hospice volunteer, long- attorney has the clout.” What a delightful elf he was! One Chicago visitor Major League question: term-care ombudsman, end-of-life doula, Of course, it’s vital to get all family I’ll never forget was Dr. Rodney Syme of Australia, “Will God be angry with mediator, and student of clinical ethics. members on board with the patient’s plan. who told a story that embedded itself in my mind me for doing this?” She’s the perfect resource to address That’s one of the biggest challenges a and came to my aid a decade later when I desperately My mind spun into EOL issues, and to advise on the import- surrogate faces. needed it. overdrive. Imagine! ance of Advance Directives (ADs) and Says Halchuck, “Family members A FEN coordinator asked me to visit an elderly Instead of providing having a capable, committed surrogate. can’t agree on what to have for dinner, let gentleman in Maine. The old man was dying; there much-needed consolation, That’s why FEN brought her on “part- alone putting in a feeding tube. They’re was no doubt about that. this old man’s religion time,” though myriad projects make it not on the same page about things. His son and daughter, young adults, had quit work was threatening him! more of a de facto full-time job. “A hospice doctor tells the story of to care for Dad. Several times a day they wrestled I had to break through Halchuck says choosing the right patient who had a distant family member him from recliner to wheelchair, rolled him to the somehow and restore his surrogate (sometimes called a “proxy” or drop in on the (dying) process out of bathroom, slid him onto the toilet, cleaned him and link to a loving God. “agent”) may be the most important thing nowhere, ‘like a pigeon flying in and Jerry Metz, MD slid him back and tugged his paralyzed body onto his An Exit Guide does not anyone planning for death can do, along Althea Halchuck s------all over everything,’ he said. favorite recliner. engage in controversy, does not tell a patient what they with having an explicit, air-tight AD. “No matter how tight your directive is, if you don’t He could use his arms should think, tries to be neutral, positive, and no threat “You want a surrogate who won’t back down or have consensus with your family, (providers) are going and hands, but that was to anyone else’s beliefs. Yes, I knew all that – but this? be intimidated or guilted,” she says, “somebody to be to err on the side of living.” all. ALS was winning His sudden thundercloud of doubt and fear had to brave, fearless, and persistent ... and someone who’s A good surrogate will be strong-willed, confident, the battle. Dad had had be neutralized, and now! The memory of Dr. Syme’s deliberative but decisive. and able to “step up to the plate and do what they’re enough and the kids were old story flashed before me, and I suddenly knew I had “You don’t want to have people second-guess you. authorized to do,” says Halchuck. But that doesn’t mean exhausted. The three of the situation under control. You must be open-minded and willing to ask questions, they’re invincible. them sat huddled on a A Guide must always be sincere. It would be but don’t just take yes or no for an answer – you are in “You can’t fall apart in a crisis, but it’s really couch, Dad in the middle, terrible to pretend to share a patient’s philosophy to charge.” difficult to carry out end-of-life decisions for a loved sharing memories and the point of sliding from compassion into mockery. It sounds like a lot, but Halchuck stresses that it’s one,” she says. “Grief is grief – anticipatory grief, if prayers. There are times, though, when it becomes the directives – if executed properly – that chart the you know someone is dying. It’s very emotional. Your Dad signaled he was important to show the one who is suffering that, at EOL course for a patient. “The Advance Directive is stamina is low, you’re exhausted, and you’re drained. ready, and as I knelt at some basic level, you “speak their language.” the roadmap,” she says, “and conversation with the Practice some self-care. Go to the gym, take a walk, Rodney Syme, MD his feet, he asked a final, I have slid along the Protestant spectrum all the patient gives you the directions to follow. The surrogate talk to your family, or have a drink with a friend.”

6 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 7 way from Episcopal altar boy to lapsed Unitarian the kid and bring him home. That’s what happened in adult, so I felt I could handle this one using the scripture, so God can’t be angry with you. inspiration provided by Dr. Syme’s experience. “You have suffered all you can stand, and you Will God “Remember when Christ was on the cross,” I said. have cried out and your call has been heard, and there “He suffered for hours and finally asked if God had is a way prepared for you. forsaken him. After that, he cried out in a loud voice “Don’t be afraid. Go in peace, my friend.” and died and was taken into heaven. Remember?” I touched his arm and felt the tension leave his The old man nodded. body as he exhaled a deep breath and started the steps be angry “You are a father and so am I,” I told him. “I know that led to his peaceful departure. A decade-old that if one of my children was being tormented and I like to think he might have been thanking his remembrance cried out to me, I would move heaven and Earth to get Redeemer. I was thanking Dr. Syme. from a wise man  with me? provides the FEN expert lists qualities response An Exit Guide must answer at a crucial moment What makes a good surrogate? By Jay Niver, FEN Editor is usually not making any decisions, unless the directive By Dr. Jerry Metz, Former FEN Exit Guide Imagine! Instead of providing much- Althea Halchuck knows about death and dying, is not specific enough.” miss the good old days, including the annual needed consolation, this old man’s religion end-of-life options, and peoples’ varied, personal A surrogate need not be a mediator, she adds. Chicago get-togethers. Meeting the founders of wishes as their end approaches. Others are available to mediate, and there should was threatening him! FEN was an inspiration, and chatting with Dr. FEN’s surrogate consultant has exhaustive experi- never be negotiating anyway: “Whoever has power of LarryI Egbert, our first medical director, was fun. ence as a patient advocate, hospice volunteer, long- attorney has the clout.” What a delightful elf he was! One Chicago visitor Major League question: term-care ombudsman, end-of-life doula, Of course, it’s vital to get all family I’ll never forget was Dr. Rodney Syme of Australia, “Will God be angry with mediator, and student of clinical ethics. members on board with the patient’s plan. who told a story that embedded itself in my mind me for doing this?” She’s the perfect resource to address That’s one of the biggest challenges a and came to my aid a decade later when I desperately My mind spun into EOL issues, and to advise on the import- surrogate faces. needed it. overdrive. Imagine! ance of Advance Directives (ADs) and Says Halchuck, “Family members A FEN coordinator asked me to visit an elderly Instead of providing having a capable, committed surrogate. can’t agree on what to have for dinner, let gentleman in Maine. The old man was dying; there much-needed consolation, That’s why FEN brought her on “part- alone putting in a feeding tube. They’re was no doubt about that. this old man’s religion time,” though myriad projects make it not on the same page about things. His son and daughter, young adults, had quit work was threatening him! more of a de facto full-time job. “A hospice doctor tells the story of to care for Dad. Several times a day they wrestled I had to break through Halchuck says choosing the right patient who had a distant family member him from recliner to wheelchair, rolled him to the somehow and restore his surrogate (sometimes called a “proxy” or drop in on the (dying) process out of bathroom, slid him onto the toilet, cleaned him and link to a loving God. “agent”) may be the most important thing nowhere, ‘like a pigeon flying in and Jerry Metz, MD slid him back and tugged his paralyzed body onto his An Exit Guide does not anyone planning for death can do, along Althea Halchuck s------all over everything,’ he said. favorite recliner. engage in controversy, does not tell a patient what they with having an explicit, air-tight AD. “No matter how tight your directive is, if you don’t He could use his arms should think, tries to be neutral, positive, and no threat “You want a surrogate who won’t back down or have consensus with your family, (providers) are going and hands, but that was to anyone else’s beliefs. Yes, I knew all that – but this? be intimidated or guilted,” she says, “somebody to be to err on the side of living.” all. ALS was winning His sudden thundercloud of doubt and fear had to brave, fearless, and persistent ... and someone who’s A good surrogate will be strong-willed, confident, the battle. Dad had had be neutralized, and now! The memory of Dr. Syme’s deliberative but decisive. and able to “step up to the plate and do what they’re enough and the kids were old story flashed before me, and I suddenly knew I had “You don’t want to have people second-guess you. authorized to do,” says Halchuck. But that doesn’t mean exhausted. The three of the situation under control. You must be open-minded and willing to ask questions, they’re invincible. them sat huddled on a A Guide must always be sincere. It would be but don’t just take yes or no for an answer – you are in “You can’t fall apart in a crisis, but it’s really couch, Dad in the middle, terrible to pretend to share a patient’s philosophy to charge.” difficult to carry out end-of-life decisions for a loved sharing memories and the point of sliding from compassion into mockery. It sounds like a lot, but Halchuck stresses that it’s one,” she says. “Grief is grief – anticipatory grief, if prayers. There are times, though, when it becomes the directives – if executed properly – that chart the you know someone is dying. It’s very emotional. Your Dad signaled he was important to show the one who is suffering that, at EOL course for a patient. “The Advance Directive is stamina is low, you’re exhausted, and you’re drained. ready, and as I knelt at some basic level, you “speak their language.” the roadmap,” she says, “and conversation with the Practice some self-care. Go to the gym, take a walk, Rodney Syme, MD his feet, he asked a final, I have slid along the Protestant spectrum all the patient gives you the directions to follow. The surrogate talk to your family, or have a drink with a friend.”

6 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 7 National poll shows EXIT FEN survey spurs reflective impact of dementia 6 MOS. TO LIVE thought over why to hasten exit By Lowrey Brown, FEN Client Services Director By Robert R. Blake why FEN, for example, supports clients with Parkinson’s, FEN contracted for a nationwide poll in January many years of the disease before being within six months Acceptance by FEN for Exit Guide services is ALS, MS, and dementia. to see how Americans feel about having options for of death – by which time you are incompetent and cannot regulated by whether an applicant has documented To broaden acceptance criteria to include more hastening their death in the face of dementia. It seems use MAiD, even in states where it is legal. medical records representing: 1) serious physical disease; psychosocial factors – such as running out of money, not the idea of actively hastening one’s death when facing 2) chronic, severe, somatic pain; 3) dementia; or 4) a wanting to move to a nursing home, inability to create a dementia is relatively new to many: 31 percent of We hope to fuel a national call for better constellation of irreversible medical conditions, which is meaningful life, or not wanting to be a burden on family respondents were neutral or unsure about the options options with which individuals can control their meant also to include consideration of a completed life, or friends – seems like an emotionally understandable presented. life trajectory when faced with dementia. life well lived, or old-age rational suicide. and compassionate extension. It seems to reflect a Supporters far outnumbered opponents, though, These categories do not cover some issues that many common value in the death-with-dignity movement: the and with education on the safeguards that ensure an Right now – for those in early-stage dementia who consider important, according to our survey of why FEN basic human right of self-determination. individual’s choice is not coerced and is repeatedly are still competent and want to conclude their life members would consider hastening their death. Other ... the most important factors that members stated, it’s hard to imagine that many fence-sitters before losing competence – you can choose Voluntarily factors include: 1) no remaining close friends, family, or wouldn’t become supporters. Stopping Eating and Drinking (VSED), you can choose pets; 2) running out of money or not wanting to give it to cited: loss of independence or intolerable quality a method of self-deliverance from a publicly available a nursing home; and 3) feeling like a burden to others. of life. But what about those of us who do not want resource (Final Exit 2020, The Peaceful Pill Handbook), In fact, FEN criteria for Guide acceptance do not to live in a demented state – often for years? or you can apply to FEN’s Exit Guide Program. directly include the most important factors that members Others should not have the power to establish All are good options, but all require focus, planning, cited: loss of independence or intolerable quality of life. qualifying criteria, even medical ones, that limit our There has been considerable national discussion and determination, and all of those become increasingly Many of the qualifying medical conditions for Guide personal decision when we feel our life has become about Medical Aid in Dying (MAiD) for those with a difficult as the disease progresses, even in the early stage. services, however, do lead to loss of autonomy and a intolerable, or is without viable purpose, and we want to terminal illness who are within six months of death. We hope to fuel a national call for better options with feeling of having an intolerable life; so, these vital issues hasten our death. There has also been a small but growing national which individuals can control their life trajectory when are somewhat indirectly included. But we live in a world of moral differences, discussion about allowing competent adults to request, faced with dementia. This will require creative thinking, Overall, our membership survey information passionate political and religious debate, bountiful and should they be struck with dementia, that food and fluid research into new methods of self-deliverance (in which contributes to an ongoing question, not just for FEN, but easily available litigation, and social media attacks. not be provided once they reach a stage where they no FEN is participating), and rethinking current MAiD laws. for the death-with-dignity movement around the world. States with MAiD laws passed what they could longer express interest in eating or drinking, and that they There has been reluctance to expand MAiD laws, Should acceptance in programs supporting hastening with legislative support; that is, acceptance criteria for be kept comfortable and allowed to die. even among supporters, in part because right-to-die one’s death stick with evidence of traditional, medical physician aid in dying based only on medical conditions FEN’s Supplemental Advance Directive for Dementia opponents invariably scream “slippery slope.” But diagnoses as the criteria for acceptance? Or, should with a prognosis of six months or less to live. Care (SADD) is a tool for doing this. opponents will scream non-medical issues – Admittedly, the safe and prudent way may be to But what about those of us who do not want to live no matter what the social and emotional stick simply with prerequisite medical diagnoses. This in a demented state – often for years? The notion that our proposal, and the stakes are ones – be given equal may protect the movement against additional, vigorous brain might dissolve while we still live instills, at least skyrocketing as more and consideration? public attacks, and gain more support of FEN and other in some of us, an unspeakable horror. Dementia erodes more of us are getting the FEN has taken the organizations that support people who want to hasten NO EXIT stance that support for their death without a terminal time limit. identity and selfhood. dreaded dementia diagnosis. In that case, however, there may be passionate The numbers are terrifying. About 1-in-7 Americans See the results of FEN’s self-deliverance should supporters of FEN and the DWD movement who cannot 71 and older suffer from some form of dementia, poll at: https:// not be limited to those ALS / DEMENTIA / MS qualify for support of their exit when they simply feel an and almost a third of those 85 and older suffer from finalexitnetwork.org/ with illness and only a unacceptable loss of independence, are experiencing an Alzheimer’s dementia alone. The catch-22 with dementia dementia-poll/ LOSS OF AUTONOMY six-month prognosis, as required in all states that intolerable quality of life, or simply don't want to spend and MAiD, of course, is that you have to suffer through  PARKINSON’S / ETC. have legal Medical Aid the rest of their life in a nursing home. in Dying (MAiD). That is 

8 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 9 National poll shows EXIT FEN survey spurs reflective impact of dementia 6 MOS. TO LIVE thought over why to hasten exit By Lowrey Brown, FEN Client Services Director By Robert R. Blake why FEN, for example, supports clients with Parkinson’s, FEN contracted for a nationwide poll in January many years of the disease before being within six months Acceptance by FEN for Exit Guide services is ALS, MS, and dementia. to see how Americans feel about having options for of death – by which time you are incompetent and cannot regulated by whether an applicant has documented To broaden acceptance criteria to include more hastening their death in the face of dementia. It seems use MAiD, even in states where it is legal. medical records representing: 1) serious physical disease; psychosocial factors – such as running out of money, not the idea of actively hastening one’s death when facing 2) chronic, severe, somatic pain; 3) dementia; or 4) a wanting to move to a nursing home, inability to create a dementia is relatively new to many: 31 percent of We hope to fuel a national call for better constellation of irreversible medical conditions, which is meaningful life, or not wanting to be a burden on family respondents were neutral or unsure about the options options with which individuals can control their meant also to include consideration of a completed life, or friends – seems like an emotionally understandable presented. life trajectory when faced with dementia. life well lived, or old-age rational suicide. and compassionate extension. It seems to reflect a Supporters far outnumbered opponents, though, These categories do not cover some issues that many common value in the death-with-dignity movement: the and with education on the safeguards that ensure an Right now – for those in early-stage dementia who consider important, according to our survey of why FEN basic human right of self-determination. individual’s choice is not coerced and is repeatedly are still competent and want to conclude their life members would consider hastening their death. Other ... the most important factors that members stated, it’s hard to imagine that many fence-sitters before losing competence – you can choose Voluntarily factors include: 1) no remaining close friends, family, or wouldn’t become supporters. Stopping Eating and Drinking (VSED), you can choose pets; 2) running out of money or not wanting to give it to cited: loss of independence or intolerable quality a method of self-deliverance from a publicly available a nursing home; and 3) feeling like a burden to others. of life. But what about those of us who do not want resource (Final Exit 2020, The Peaceful Pill Handbook), In fact, FEN criteria for Guide acceptance do not to live in a demented state – often for years? or you can apply to FEN’s Exit Guide Program. directly include the most important factors that members Others should not have the power to establish All are good options, but all require focus, planning, cited: loss of independence or intolerable quality of life. qualifying criteria, even medical ones, that limit our There has been considerable national discussion and determination, and all of those become increasingly Many of the qualifying medical conditions for Guide personal decision when we feel our life has become about Medical Aid in Dying (MAiD) for those with a difficult as the disease progresses, even in the early stage. services, however, do lead to loss of autonomy and a intolerable, or is without viable purpose, and we want to terminal illness who are within six months of death. We hope to fuel a national call for better options with feeling of having an intolerable life; so, these vital issues hasten our death. There has also been a small but growing national which individuals can control their life trajectory when are somewhat indirectly included. But we live in a world of moral differences, discussion about allowing competent adults to request, faced with dementia. This will require creative thinking, Overall, our membership survey information passionate political and religious debate, bountiful and should they be struck with dementia, that food and fluid research into new methods of self-deliverance (in which contributes to an ongoing question, not just for FEN, but easily available litigation, and social media attacks. not be provided once they reach a stage where they no FEN is participating), and rethinking current MAiD laws. for the death-with-dignity movement around the world. States with MAiD laws passed what they could longer express interest in eating or drinking, and that they There has been reluctance to expand MAiD laws, Should acceptance in programs supporting hastening with legislative support; that is, acceptance criteria for be kept comfortable and allowed to die. even among supporters, in part because right-to-die one’s death stick with evidence of traditional, medical physician aid in dying based only on medical conditions FEN’s Supplemental Advance Directive for Dementia opponents invariably scream “slippery slope.” But diagnoses as the criteria for acceptance? Or, should with a prognosis of six months or less to live. Care (SADD) is a tool for doing this. opponents will scream non-medical issues – Admittedly, the safe and prudent way may be to But what about those of us who do not want to live no matter what the social and emotional stick simply with prerequisite medical diagnoses. This in a demented state – often for years? The notion that our proposal, and the stakes are ones – be given equal may protect the movement against additional, vigorous brain might dissolve while we still live instills, at least skyrocketing as more and consideration? public attacks, and gain more support of FEN and other in some of us, an unspeakable horror. Dementia erodes more of us are getting the FEN has taken the organizations that support people who want to hasten NO EXIT stance that support for their death without a terminal time limit. identity and selfhood. dreaded dementia diagnosis. In that case, however, there may be passionate The numbers are terrifying. About 1-in-7 Americans See the results of FEN’s self-deliverance should supporters of FEN and the DWD movement who cannot 71 and older suffer from some form of dementia, poll at: https:// not be limited to those ALS / DEMENTIA / MS qualify for support of their exit when they simply feel an and almost a third of those 85 and older suffer from finalexitnetwork.org/ with illness and only a unacceptable loss of independence, are experiencing an Alzheimer’s dementia alone. The catch-22 with dementia dementia-poll/ LOSS OF AUTONOMY six-month prognosis, as required in all states that intolerable quality of life, or simply don't want to spend and MAiD, of course, is that you have to suffer through  PARKINSON’S / ETC. have legal Medical Aid the rest of their life in a nursing home. in Dying (MAiD). That is 

8 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 9 A youngster’s viola strings touched a woman’s heartstrings By Terry Manzo, FEN Member Canada takes EOL options Our dear family friend Florence T. always claimed that her biggest problem was that she was a 21-year-old mind trapped in a 96-year-old where U.S. refuses to go body. One of the many activities she enjoyed until her failing body prohibited it was attending the No longer ‘reasonably foreseeable’ death; local youth orchestra concerts, an organization in MAiD covers disease, illness or disability – which my teenage kids all participated. mental illness set to be next My 13-year-old daughter Nena and I were on By Jay Niver, FEN Editor our way to a rehearsal one afternoon but had a little extra time and decided to pay a short visit to Florence, merica’s northern neighbor in March where every U.S. law requires a requesting applicant to who was approaching the end of her life. Nena, aware approved legislation that brings sweeping be “competent” (of sound mind at the time of MAiD). of Mrs. T’s love of music, decided to play her viola We stayed. expansion of Canucks’ end-of-life choices and The law approved in March goes even further. It putsA Canada in a place where U.S. RTD advocates say would expand MAiD two years from now to include for her. This was Nena’s first up-close-and-personal Florence was too experience with dying and death, but when our dear we should be going. those suffering incurable, intolerable mental illness – weak to respond verbally friend passed a few days later, Nena had the joy of Bill C-7 is in response to a 2019 Quebec court something even the most ardent RTD advocates have but was clearly aware of her knowing that she had helped ease Mrs. T. through that ruling that struck down as unconstitutional part of never dared to voice in this country. surroundings. She did not seem process. Ottawa’s previous Medical During the two-year Aid in Dying (MAiD) law, to be in pain, but neither were her I am now 82, and Nena has teenagers of her own, Canadians have access to: mental illness exclusion, facial features entirely relaxed. When Nena asked if but both of us vividly remember that experience and which said only individuals the government will hear she could play for her for a few minutes, a ghost of a know that is one thing that makes it easy for us to whose natural deaths were • Euthanasia (help to administer) from experts and develop smile crossed her face. As the first notes issued forth discuss my own end-of-life issues with my kids and “reasonably foreseeable” • No need for terminal illness safeguards and protocols from the instrument, I watched her countenance soften grandkids. could be eligible. – Death need not be ‘reasonably foreseeable’ for people who seek access and slowly take on an expression of absolute peace Thanks to her loving and caring involvement with The law now provides a • Patients may sign a waiver of consent to MAiD, but whose sole separate pathway for that brought tears to my eyes. Florence’s dying process, Nena is acutely aware of in case they lose capacity underlying medical factor individuals whose deaths is mental health. Nena must have seen the transformation as well, the beauty and joy in easing “the path” to death in • Mental illness consideration in 2 years because when it was time to head for the rehearsal, she whatever way one can. are not imminent or readily The law, which is asked if she could skip it and stay to play for Mrs. T. predictable, but who suffer expected to take effect in  severe disease, illness, or disability. June, “will allow long-suffering patients with serious, Every U.S. jurisdiction that allows MAiD requires chronic illness with no chance of recovery and with diagnosis of a terminal illness with no more than six unbearable suffering to seek support from a doctor in months to live. What’s more, nowhere in the country ending their own life,” Dying With Dignity Canada DEATH – new resource helps tackle tough topic is euthanasia legal, where someone may take an active posted within hours of the law being passed. A new FEN resource can help friends and families more than once. role in helping a patient receive the medication or other C-7 includes a new track with requirements for address and discuss critically sensitive, personal issues • Don’t be derailed if others are squeamish about assistance needed to exit. those with no foreseeable death. Chief among them: as they approach vital end-of-life decision-making. these serious issues and questions. Canada’s original RTD law, passed in June 2016, a minimum 90-day period between when the person’s “Discussing Death” is a straightforward, three-page • Don’t assume loved ones know your wishes. provided for euthanasia even if a patient is physically first assessment for MAiD begins and the day on which document available free to read or download on FEN’s Spell them out explicitly. able to perform needed tasks. the MAiD procedure is carried out. website: https://finalexitnetwork.org/discussing-death/ • Focus on personal values and what is most The C-7 bill includes another advance that U.S. There were 5,631 medically assisted deaths in It’s essentially a primer on how to broach talk with important to you. Tread gingerly on financial issues, if advocates say is desperately needed: Canadians who Canada in 2019, representing two percent of all deaths loved ones about your views on quality of life and what they need to be considered at all. have been approved, but risk losing capacity to consent in the country and a 26 percent increase over such you may desire. Some basic advice: FEN’s website resources include info on more than prior to MAiD, will be able to sign a waiver of final cases in 2018, according to the country’s first annual • Don’t procrastinate. Though you may be in 200 books, 15 documentary films, living wills, VSED, consent. report on the practice. good health, things need to be discussed early – and and the Special Advance Directive for Dementia Care. This involves the challenging realm of dementia,  10 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 11 A youngster’s viola strings touched a woman’s heartstrings By Terry Manzo, FEN Member Canada takes EOL options Our dear family friend Florence T. always claimed that her biggest problem was that she was a 21-year-old mind trapped in a 96-year-old where U.S. refuses to go body. One of the many activities she enjoyed until her failing body prohibited it was attending the No longer ‘reasonably foreseeable’ death; local youth orchestra concerts, an organization in MAiD covers disease, illness or disability – which my teenage kids all participated. mental illness set to be next My 13-year-old daughter Nena and I were on By Jay Niver, FEN Editor our way to a rehearsal one afternoon but had a little extra time and decided to pay a short visit to Florence, merica’s northern neighbor in March where every U.S. law requires a requesting applicant to who was approaching the end of her life. Nena, aware approved legislation that brings sweeping be “competent” (of sound mind at the time of MAiD). of Mrs. T’s love of music, decided to play her viola We stayed. expansion of Canucks’ end-of-life choices and The law approved in March goes even further. It putsA Canada in a place where U.S. RTD advocates say would expand MAiD two years from now to include for her. This was Nena’s first up-close-and-personal Florence was too experience with dying and death, but when our dear we should be going. those suffering incurable, intolerable mental illness – weak to respond verbally friend passed a few days later, Nena had the joy of Bill C-7 is in response to a 2019 Quebec court something even the most ardent RTD advocates have but was clearly aware of her knowing that she had helped ease Mrs. T. through that ruling that struck down as unconstitutional part of never dared to voice in this country. surroundings. She did not seem process. Ottawa’s previous Medical During the two-year Aid in Dying (MAiD) law, to be in pain, but neither were her I am now 82, and Nena has teenagers of her own, Canadians have access to: mental illness exclusion, facial features entirely relaxed. When Nena asked if but both of us vividly remember that experience and which said only individuals the government will hear she could play for her for a few minutes, a ghost of a know that is one thing that makes it easy for us to whose natural deaths were • Euthanasia (help to administer) from experts and develop smile crossed her face. As the first notes issued forth discuss my own end-of-life issues with my kids and “reasonably foreseeable” • No need for terminal illness safeguards and protocols from the instrument, I watched her countenance soften grandkids. could be eligible. – Death need not be ‘reasonably foreseeable’ for people who seek access and slowly take on an expression of absolute peace Thanks to her loving and caring involvement with The law now provides a • Patients may sign a waiver of consent to MAiD, but whose sole separate pathway for that brought tears to my eyes. Florence’s dying process, Nena is acutely aware of in case they lose capacity underlying medical factor individuals whose deaths is mental health. Nena must have seen the transformation as well, the beauty and joy in easing “the path” to death in • Mental illness consideration in 2 years because when it was time to head for the rehearsal, she whatever way one can. are not imminent or readily The law, which is asked if she could skip it and stay to play for Mrs. T. predictable, but who suffer expected to take effect in  severe disease, illness, or disability. June, “will allow long-suffering patients with serious, Every U.S. jurisdiction that allows MAiD requires chronic illness with no chance of recovery and with diagnosis of a terminal illness with no more than six unbearable suffering to seek support from a doctor in months to live. What’s more, nowhere in the country ending their own life,” Dying With Dignity Canada DEATH – new resource helps tackle tough topic is euthanasia legal, where someone may take an active posted within hours of the law being passed. A new FEN resource can help friends and families more than once. role in helping a patient receive the medication or other C-7 includes a new track with requirements for address and discuss critically sensitive, personal issues • Don’t be derailed if others are squeamish about assistance needed to exit. those with no foreseeable death. Chief among them: as they approach vital end-of-life decision-making. these serious issues and questions. Canada’s original RTD law, passed in June 2016, a minimum 90-day period between when the person’s “Discussing Death” is a straightforward, three-page • Don’t assume loved ones know your wishes. provided for euthanasia even if a patient is physically first assessment for MAiD begins and the day on which document available free to read or download on FEN’s Spell them out explicitly. able to perform needed tasks. the MAiD procedure is carried out. website: https://finalexitnetwork.org/discussing-death/ • Focus on personal values and what is most The C-7 bill includes another advance that U.S. There were 5,631 medically assisted deaths in It’s essentially a primer on how to broach talk with important to you. Tread gingerly on financial issues, if advocates say is desperately needed: Canadians who Canada in 2019, representing two percent of all deaths loved ones about your views on quality of life and what they need to be considered at all. have been approved, but risk losing capacity to consent in the country and a 26 percent increase over such you may desire. Some basic advice: FEN’s website resources include info on more than prior to MAiD, will be able to sign a waiver of final cases in 2018, according to the country’s first annual • Don’t procrastinate. Though you may be in 200 books, 15 documentary films, living wills, VSED, consent. report on the practice. good health, things need to be discussed early – and and the Special Advance Directive for Dementia Care. This involves the challenging realm of dementia,  10 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 11 An emerging field of non-medical specialists (is) stepping in to help. NEDA ... serves as a ‘big tent’ for doulas, trainers, and other interested parties.

❑ Serving as a liaison between client/family/ END-OF-LIFE other caregivers, and being an advocate for the patient; By Angela Shook & Karen Reppen particularly in complex situations, such as when ❑ Providing practical, emotional, social, Guest Contributors an individual chooses to voluntarily stop eating psychological, and spiritual support; Just a few generations ago, tending to the and drinking (VSED). dying and the dead was a normal, natural, and D Recognizing that many people may need ❑ Problem solving and logistical assistance; expected part of life. Most people died at home additional support, there is an emerging field of ❑ Facilitating conversations with loved ones; with family, friends, and neighbors providing non-medical specialists, commonly called end- ❑ Life review and legacy work; support. of-life doulas (EOLDs), who are stepping in to O ❑ Educating, guiding, and coaching; Over time and for many reasons, end-of- help. Similar to the way birth doulas assist during life care became the responsibility of medical pregnancy and labor, EOLDs do not replace, but ❑ Providing respite, companionship, specialists in institutionalized settings separated instead complement, what is available through and sitting vigil; from the general population. By the 1970s, there U existing medical and hospice providers. ❑ Planning funerals and memorial services; were concerns that the pendulum had swung too Typically, they serve as project managers ❑ Performing rituals and ceremonies EOLD fees vary significantly based on far, and the door opened for hospice programs who are available to assist the dying person and and acting as celebrant; location, experience, and certifications, and which make it easier for people to die in their own their loved ones – before, during, and after death. L ❑ Grief support. typically fall in the $30 to $80 per hour range. home. Specific offerings vary by individual – some Although hospice home care provides a wealth concentrate their focus, while others offer a broad EOLDs come from many backgrounds. Some are of medical and other resources, it is not designed spectrum of services that may include: drawn to the work due to previous experience as professionalism; technical skills; and values and ethics. clinical care providers or hospice professionals and Founded in 2017, NEDA is a nonprofit membership to provide round-the-clock personal care. Most A ❑ Advance care planning, helping people get volunteers. Some have been end-of-life care-givers to organization which serves as a “big tent” for doulas, care-giving is placed in the hands of family their affairs in order and saying good-bye; members and others who may not have the time friends or family members. trainers, and other interested parties. EOLDs ❑ Coordinating community resources and/or or practical know-how to manage all the details – EOLD fees can vary significantly based who have passed NEDA’s assessment S medical personnel; upon location, experience, and certifica- standards are noted as“NEDA tions. They typically fall in the $30 to proficient” in the organization’s $80 per hour range. Some doulas do directory. not charge for their services, or they To find information about offer a sliding scale of fees. NEDA, the proficiency assessment Numerous training programs are process, and a directory of EOLDs

available – each with its own and trainers, please visit:

strengths and philosophies. www.nedalliance.org, or go to: Certificates of completion are often https://www.facebook.com/national. awarded by training entities, but EOLDs end.of.life.doula.alliance/. are not currently licensed or credentialed by a  governmental or other official body; services are not yet covered by insurance, and reimbursement is generally paid out of pocket by the client. Programs ‘Zoom’ ahead For people to better understand and embrace the COVID-19 has not silenced the FEN Speakers work EOLDs do, they’ll want assurances that doulas Bureau. Presentations take place via Zoom or other possess certain fundamental knowledge and skills, and online platforms, and attendance is up because no that there is a basic level of continuity and consistency one has to travel! that defines EOLD scope of practice. If your church, civic group, or other organiza- To meet this need, the National End-of-Life Doula tion would enjoy a FEN presentation, email (info@ Alliance (NEDA) created a proficiency assessment finalexitnetwork.org) or call us (866-654-9156), and that measures general knowledge in four areas of core we’ll hook you up. competency: communication and interpersonal skills;

12 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 13 An emerging field of non-medical specialists (is) stepping in to help. NEDA ... serves as a ‘big tent’ for doulas, trainers, and other interested parties.

❑ Serving as a liaison between client/family/ END-OF-LIFE other caregivers, and being an advocate for the patient; By Angela Shook & Karen Reppen particularly in complex situations, such as when ❑ Providing practical, emotional, social, Guest Contributors an individual chooses to voluntarily stop eating psychological, and spiritual support; Just a few generations ago, tending to the and drinking (VSED). dying and the dead was a normal, natural, and D Recognizing that many people may need ❑ Problem solving and logistical assistance; expected part of life. Most people died at home additional support, there is an emerging field of ❑ Facilitating conversations with loved ones; with family, friends, and neighbors providing non-medical specialists, commonly called end- ❑ Life review and legacy work; support. of-life doulas (EOLDs), who are stepping in to O ❑ Educating, guiding, and coaching; Over time and for many reasons, end-of- help. Similar to the way birth doulas assist during life care became the responsibility of medical pregnancy and labor, EOLDs do not replace, but ❑ Providing respite, companionship, specialists in institutionalized settings separated instead complement, what is available through and sitting vigil; from the general population. By the 1970s, there U existing medical and hospice providers. ❑ Planning funerals and memorial services; were concerns that the pendulum had swung too Typically, they serve as project managers ❑ Performing rituals and ceremonies EOLD fees vary significantly based on far, and the door opened for hospice programs who are available to assist the dying person and and acting as celebrant; location, experience, and certifications, and which make it easier for people to die in their own their loved ones – before, during, and after death. L ❑ Grief support. typically fall in the $30 to $80 per hour range. home. Specific offerings vary by individual – some Although hospice home care provides a wealth concentrate their focus, while others offer a broad EOLDs come from many backgrounds. Some are of medical and other resources, it is not designed spectrum of services that may include: drawn to the work due to previous experience as professionalism; technical skills; and values and ethics. clinical care providers or hospice professionals and Founded in 2017, NEDA is a nonprofit membership to provide round-the-clock personal care. Most A ❑ Advance care planning, helping people get volunteers. Some have been end-of-life care-givers to organization which serves as a “big tent” for doulas, care-giving is placed in the hands of family their affairs in order and saying good-bye; members and others who may not have the time friends or family members. trainers, and other interested parties. EOLDs ❑ Coordinating community resources and/or or practical know-how to manage all the details – EOLD fees can vary significantly based who have passed NEDA’s assessment S medical personnel; upon location, experience, and certifica- standards are noted as“NEDA tions. They typically fall in the $30 to proficient” in the organization’s $80 per hour range. Some doulas do directory. not charge for their services, or they To find information about offer a sliding scale of fees. NEDA, the proficiency assessment Numerous training programs are process, and a directory of EOLDs

available – each with its own and trainers, please visit:

strengths and philosophies. www.nedalliance.org, or go to: Certificates of completion are often https://www.facebook.com/national. awarded by training entities, but EOLDs end.of.life.doula.alliance/. are not currently licensed or credentialed by a  governmental or other official body; services are not yet covered by insurance, and reimbursement is generally paid out of pocket by the client. Programs ‘Zoom’ ahead For people to better understand and embrace the COVID-19 has not silenced the FEN Speakers work EOLDs do, they’ll want assurances that doulas Bureau. Presentations take place via Zoom or other possess certain fundamental knowledge and skills, and online platforms, and attendance is up because no that there is a basic level of continuity and consistency one has to travel! that defines EOLD scope of practice. If your church, civic group, or other organiza- To meet this need, the National End-of-Life Doula tion would enjoy a FEN presentation, email (info@ Alliance (NEDA) created a proficiency assessment finalexitnetwork.org) or call us (866-654-9156), and that measures general knowledge in four areas of core we’ll hook you up. competency: communication and interpersonal skills;

12 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 13 T H BE a c k Pa g e Visit for Vacation A COMPENDIUM OF RIGHT-TO-DIE WORLD NEWS Australia New Mexico • Tasmania will become the third Australian New Mexico is close to becoming the 11th U.S. Not to die jurisdiction to legalize MAiD after legislation passed jurisdiction to allow MAiD after the state senate passed the state’s upper house in March. a law last month that would remove criminal and civil It is the fourth time proposed euthanasia laws liability for medical professionals who assist in the have come before Tasmania’s parliament since 2009. death of terminally ill patients who have chosen to end Similar laws already exist in Western Australia and their lives. Victoria. The Elizabeth Whitfield End-of-Life Options Act The legislation allows people who are suffering would require a terminal health diagnosis, a physical from advanced, incurable, and irreversible conditions and mental health evaluation, and a 48-hour waiting to end their lives in situations where they would be period after a lethal prescription is filled. expected to die within six months. New Mexico would become the second state to pass After the bill receives royal assent from the a RTD law where a third or more of adults are Catholic. governor, it is expected to take up to 18 months to Gov. Michelle Lujan Grisham has said she will sign implement the new regulations. the bill, once minor differences between the senate and • South Australia’s 17th attempt in 25 years to house versions are ironed out. introduce voluntary euthanasia laws came up for Ireland debate in March. The Voluntary Assisted Dying Bill A newly formed group of Irish doctors has proposed Suffering, desperately ill Americans travel thousands of miles is modeled on similar legislation passed in Victoria. It introducing laws to allow medically assisted dying, to die peacefully in Switzerland, where Dignitas and others includes 68 safeguards and requires that people must saying a rollout is possible in a “safe and fair manner.” provide efficient, compassionate assistance – even for non-residents. reside there at least 12 months. In a written submission to the committee consider- The Alps are a great place to visit, but you needn’t fly to Europe People wishing to end their lives must: show ing the Dying with Dignity Bill, the 105-member Irish they have decision-making capacity and are capable to die quietly with dignity. Final Exit Network provides knowledge, Doctors Supporting Medical Aid in Dying (IDsMAiD) of informed consent; have their request verified by support, and guidance to qualifying individuals whose quality of life group says that in certain cases of terminal illness, two independent witnesses; and be experiencing makes it no longer worth living – and we do so legally in every U.S. state. “patients deserve to have their choice respected.” intolerable suffering that cannot be relieved. You may qualify for FEN support, even without a terminal illness. More than 1,000 submissions both supporting and A terminal diagnosis and life expectancy of less opposing the proposed new laws have been offered. than six months, or 12 months for a person with a The IDsMAiD statement says the bill’s criteria neurodegenerative disease, must also be confirmed. for qualifying for assisted dying are appropriately Where there’s a California “conservative and restrictive” and that the safeguards California lawmakers are aiming to renew the proposed are “conservative, balanced and fair.” will there’s a way state’s MAiD law indefinitely so residents with Portugal incurable diseases have the option to take their own Portugal’s Constitutional Court blocked a law in Donate to FEN while you shop! The generous gifts that members life rather than suffer unbearably painful deaths or mid-March allowing euthanasia and physician-assisted AmazonSmile allows you to support FEN and friends bequeath to Final Exit Network upon face their final months or years in a vegetative state. suicide for terminally ill or gravely injured people. every time you make a purchase – their passing accounted for more than half of every The End of Life Option Act went into effect in 2016 The court said the law is imprecise in identifying at no cost to you! dollar FEN spent in its most recent fiscal year. and included a sunset provision allowing it to expire at the circumstances under which those procedures can Please remember us in your will, or name FEN as the end of 2025 unless new legislation was passed. Visit smile.amazon.com and select occur. The judges rejected the law in a 7-5 ruling. Final Exit Network to donate 0.5% a beneficiary in your IRA or other financial product. It The new law will remove expiration and the The governing center-left Socialist Party, which of your eligible purchases to FEN. is easy to do and requires no legal advice. All you need requirement that an individual who is prescribed and was the driving force behind the bill, said that if is our tax ID (80-0119137) and address: Final Exit ingests lethal medication make a final attestation. It You can contribute to Final Exit Network without Portuguese President Marcelo Rebelo de Sousa Network, POB 10071, Tallahassee, FL 32302. would also allow for a mental-health professional it costing you one extra penny. Just remember, sends the bill back to parliament, it will reword the If you have any questions, we’ll be happy to answer besides a psychologist or psychiatrist to conduct an whenever you purchase from Amazon, order from legislation and pass it again. the smile.amazon.com website. A small percentage of them – just call us toll-free at 866-654-9156. We’ll help exam for the purpose of qualifying an applicant. your order will come to FEN, but it does add up! you through the easy process to leave a gift for FEN. 

14 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 15 T H BE a c k Pa g e Visit for Vacation A COMPENDIUM OF RIGHT-TO-DIE WORLD NEWS Australia New Mexico • Tasmania will become the third Australian New Mexico is close to becoming the 11th U.S. Not to die jurisdiction to legalize MAiD after legislation passed jurisdiction to allow MAiD after the state senate passed the state’s upper house in March. a law last month that would remove criminal and civil It is the fourth time proposed euthanasia laws liability for medical professionals who assist in the have come before Tasmania’s parliament since 2009. death of terminally ill patients who have chosen to end Similar laws already exist in Western Australia and their lives. Victoria. The Elizabeth Whitfield End-of-Life Options Act The legislation allows people who are suffering would require a terminal health diagnosis, a physical from advanced, incurable, and irreversible conditions and mental health evaluation, and a 48-hour waiting to end their lives in situations where they would be period after a lethal prescription is filled. expected to die within six months. New Mexico would become the second state to pass After the bill receives royal assent from the a RTD law where a third or more of adults are Catholic. governor, it is expected to take up to 18 months to Gov. Michelle Lujan Grisham has said she will sign implement the new regulations. the bill, once minor differences between the senate and • South Australia’s 17th attempt in 25 years to house versions are ironed out. introduce voluntary euthanasia laws came up for Ireland debate in March. The Voluntary Assisted Dying Bill A newly formed group of Irish doctors has proposed Suffering, desperately ill Americans travel thousands of miles is modeled on similar legislation passed in Victoria. It introducing laws to allow medically assisted dying, to die peacefully in Switzerland, where Dignitas and others includes 68 safeguards and requires that people must saying a rollout is possible in a “safe and fair manner.” provide efficient, compassionate assistance – even for non-residents. reside there at least 12 months. In a written submission to the committee consider- The Alps are a great place to visit, but you needn’t fly to Europe People wishing to end their lives must: show ing the Dying with Dignity Bill, the 105-member Irish they have decision-making capacity and are capable to die quietly with dignity. Final Exit Network provides knowledge, Doctors Supporting Medical Aid in Dying (IDsMAiD) of informed consent; have their request verified by support, and guidance to qualifying individuals whose quality of life group says that in certain cases of terminal illness, two independent witnesses; and be experiencing makes it no longer worth living – and we do so legally in every U.S. state. “patients deserve to have their choice respected.” intolerable suffering that cannot be relieved. You may qualify for FEN support, even without a terminal illness. More than 1,000 submissions both supporting and A terminal diagnosis and life expectancy of less opposing the proposed new laws have been offered. than six months, or 12 months for a person with a The IDsMAiD statement says the bill’s criteria neurodegenerative disease, must also be confirmed. for qualifying for assisted dying are appropriately Where there’s a California “conservative and restrictive” and that the safeguards California lawmakers are aiming to renew the proposed are “conservative, balanced and fair.” will there’s a way state’s MAiD law indefinitely so residents with Portugal incurable diseases have the option to take their own Portugal’s Constitutional Court blocked a law in Donate to FEN while you shop! The generous gifts that members life rather than suffer unbearably painful deaths or mid-March allowing euthanasia and physician-assisted AmazonSmile allows you to support FEN and friends bequeath to Final Exit Network upon face their final months or years in a vegetative state. suicide for terminally ill or gravely injured people. every time you make a purchase – their passing accounted for more than half of every The End of Life Option Act went into effect in 2016 The court said the law is imprecise in identifying at no cost to you! dollar FEN spent in its most recent fiscal year. and included a sunset provision allowing it to expire at the circumstances under which those procedures can Please remember us in your will, or name FEN as the end of 2025 unless new legislation was passed. Visit smile.amazon.com and select occur. The judges rejected the law in a 7-5 ruling. Final Exit Network to donate 0.5% a beneficiary in your IRA or other financial product. It The new law will remove expiration and the The governing center-left Socialist Party, which of your eligible purchases to FEN. is easy to do and requires no legal advice. All you need requirement that an individual who is prescribed and was the driving force behind the bill, said that if is our tax ID (80-0119137) and address: Final Exit ingests lethal medication make a final attestation. It You can contribute to Final Exit Network without Portuguese President Marcelo Rebelo de Sousa Network, POB 10071, Tallahassee, FL 32302. would also allow for a mental-health professional it costing you one extra penny. Just remember, sends the bill back to parliament, it will reword the If you have any questions, we’ll be happy to answer besides a psychologist or psychiatrist to conduct an whenever you purchase from Amazon, order from legislation and pass it again. the smile.amazon.com website. A small percentage of them – just call us toll-free at 866-654-9156. We’ll help exam for the purpose of qualifying an applicant. your order will come to FEN, but it does add up! you through the easy process to leave a gift for FEN. 

14 Final Exit Network Spring 2021 Spring 2021 Final Exit Network 15 FINAL EXIT NETWORK PO BOX 10071 TALLAHASSEE, FL 32302 Passing MAiD is start, not end, of challenges By Jay Niver, FEN Editor participate in any New Mexico DWD advocates way. celebrated a long, hard-fought victory “Washington in March when their state became is one of the most the 11th U.S. jurisdiction to allow irreligious states Medical Aid in Dying (MAiD). in the country – There’s a collective tendency to 40 percent of exhale deeply, sit back and say, “We Washingtonians Judy Kinney, ED did it.” But Judy Kinney knows the do not identify with any religion, real, heavy lifting still lies ahead. yet over 50 percent of our hospitals Her state of Washington passed and medical services are religious- its Death With Dignity Act on Nov. restricted entities,” Kinney explains. 4, 2008, “and we still don’t have the “We recently lost major health- awareness and access that people care providers that merged with should have,” she says. Catholic institutions, and death with “There’s a myth that just because dignity was sacrified in the process.” you get the law, you think, ‘✔, every- Kinney’s belief in EOL choices thing will be fine.’ But it’s not. It’s grew from a family culture of candor. really just the start of things.” Her mother lived past 97, “and for Kinney is executive director of the last 27 years of her life, we talked End of Life Washington (EOLWA), about dying. It was just something which “has been around in one form we talked about all the time,” Kinney or another since the late ’80s,” she recalls. “I thought everyone talked says. That mostly volunteer group has about dying ... a three-pronged mission of advocacy, “I want people to have the life education, and support for people they want to live, and that means facing end-of-life choices. having the death they want to have.” “We talk to people about all their Some EOLWA clients do not options,” says Kinney. “We want qualify for the state’s DWD law. As them to have a peaceful, meaningful in every other MAiD jurisdiction, the death. We provide services with applicant must have a six-month or significant outreach and education, shorter terminal prognosis. to support them in navigating the In that case, says Kinney, the systems.” patient may be referred to Final Exit Much of the public is ignorant Network: “We’ve always been letting about Washington’s MAiD law even people know about FEN, but we after a dozen years. What’s more, don’t have the resources to track it.” it’s getting harder – not easier – to EOLWA and FEN have recently access, because more and more partnered in principle to share links, potential providers are becoming tied contacts, information, and resources. to religiously restrictive healthcare Kinney says the two groups are in systems. some “similar, evolving places,” and They don’t just frown on aid in she calls FEN “an essential end-of-life dying – they forbid their people to choice. We’re not afraid to say that.”