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Vol 18 • No 3 Summer 2019

In This Issue • Board marks 15 years; honors Humphry Page 6 • Is ‘dignicide’ final word in ‘suicide’ debate? 8 • Is it time for DNR to RIP? 11 • Meet incoming President Brian Ruder 12

• Who qualifies for Exit Guide support? 13

• Letter calls out C&C; Maine, N.J. pass MAiD 15 F I N D I N G

IN SOMETHING HOPELESS

By Rev. Kevin Bradley, Board Member as “the feeling that what is wanted can be had.” am occasionally asked to talk with Final Most people who contact FEN would welcome a Exit Network clients or family members who spontaneous recovery from their illness, but that’s have questions about religion or spirituality. usually not what they’re hoping for when they talk to TheyI sometimes seek help in coming to terms with me. their faith tradition’s opposition to self-deliverance. Their hope may have a religious aspect, such as Usually, clients have already reconciled the the hope of an afterlife of some kind. There may be a apparent conflict for themselves, but a family certain amount of hope in knowing that the pain will member may be struggling to understand his or her end, or the anticipated pain will not happen, although decision and its consequences. pain relief is rarely the main reason they choose self- A few months ago, I had a conversation with a deliverance. relatively young man who was planning his exit and Much of life seems beyond our control, even was concerned for his mother. She was perhaps more when we are healthy. When facing an intolerable religious than he, but was supportive of quality of life, choosing the time and his decision and planned to be at his side manner of death gives us a sense of every step of the way. A few months later, control. That sense of autonomy is the she called me to express her gratitude and essence of hope. ask me about something her son had said When I was a hospice chaplain, I before his death. He told her that planning often advised my patients to plan their his own exit gave him hope. own funerals as a gift to their families. That didn’t make sense to her, because That advice was intended to prevent the whole reason for his self-deliverance family members from fighting about was that there was no hope of recovering “what Dad would have wanted.” from his illness. What “hope” was he It turned out that planning their own talking about? funerals also gave patients a renewed Hope is defined on Dictionary.com Rev. Kevin Bradley HOPE continued on page 2 Renew your membership online: www.finalexitnetwork.org Final Not his WORD Still speaking out: Derek details birth of North American RTD movement By Derek Humphry, Chair, FEN Advisory Board

n the last FEN magazine, I was described as the After lots of hesitant answers, I drew together “founder of the right-to-die movement.” Not a board of eight to form a California nonprofit quite! More accurately, I am the founder of the organization with IRS acceptance. “modern,I American right-to-die movement.” This was the time of bombings of abortion clinics, In 1979 – when I pondered starting a campaign Ronald Reagan came to power, and Jerry Falwell was to make self-deliverance at life’s end a well-informed in full cry from the far right. “You’ll be destroyed,” action, and also to legalize Medical Aid in Dying said the cynics, to which I replied: “I’ll be here when (MAiD) – there were already two established groups they’re long gone.” in America: Society for the Right to Die, and Concern Enduring For Dying. I sought their help but was turned away. People of good will often ask me why I’m still (The CEO of the second organization wrote that she fighting for this hot-button cause after 40 years? The hoped I’d fail.) Both groups confined their work to first answer is, of course, that it is a basic human promoting Advance Directives (aka Living Wills). liberty to have control over how one dies, if the final A few years later, they faded away, and I stages are painful and distressing. announced Hemlock Society USA in l980, meeting Such a noble cause, hitherto neglected, had strong with a mixture of support and scorn. My office was appeal to me. my garage in Santa Monica, and financing was the Secondly, at 50 years old, I was an experienced royalties of my new book, Jean’s Way. There was no investigative journalist and nonfiction book author, staffing for the first three years. accustomed to appearing on radio and television to debate issues like race relations, police corruption, HOPE continued from page 1 and terrorism. So, I knew what a cauldron I was getting into. sense of purpose, which made their last days more I had not intended Jean’s Way to be a enjoyable for everyone involved. campaigning book, but that is what it turned out Ironically, preparing for their deaths gave them a to be. Published in six languages, it gave me sound reason to live, even in their last days. They wouldn’t credentials as someone who had “been there.” live longer, but they could live more intentionally – (Although unintended as a pointer, Jean’s and that mattered. chosen manner of hastened death turned out to be I shared these reflections with the young man’s approximately the way the death-with-dignity laws in mother. She breathed a heavy sigh of relief, and then nine U.S. states are framed.) said, “That makes sense, and it sounds like him. The Being a leader of the right-to-die movement doctors even used that word – they said his condition enabled me to: 1) fight for reform in a field I sensed was hopeless. But they didn’t know my son. I can see was coming to the fore, as were abortion rights, that by planning everything about his last days, he gay rights, and same-sex marriage; and 2) use my had a sense of purpose. background as a writer and speaker to promote this “He found hope in something hopeless.” FINAL continued on next page

2 Final Exit Network Summer 2019 Newsletter custom ads for publications Julia Hanway – jack of and conferences, which were eye-catching and spread our all trades, master of each message; and she organized and oversaw the first-of-its kind By Janis Landis, Ex-FEN President Conference on Dying in the – Hanway is leaving FEN for other opportunities Americas, helping us network. That headline is what I found myself gratefully “She also put together the saying throughout my presidency. When Julia most informative, friendly, lively began working with FEN in 2014, I knew we had Julia Hanway and interesting conference of someone to fill in major gaps in our technology and the World Federation of Right to Die Societies,” said databases, but I had no idea she would build our new Faye Girsh. “Advocates global-wide came together in infrastructure and outreach in a transformative way. Chicago in 2014.” We had no efficient way to track and monitor Missing from Julia’s accomplishments are the membership payments. Julia developed a system that dedication, enthusiasm, and creativity she brought to not only did that, but was robust enough to answer all her work. She was a full partner in every aspect with kinds of queries while ensuring data protection. With our volunteers, the board, and FEN leadership. There wizard-like skill, she produced a newsletter that was was no job she couldn’t do, no workload too heavy, no glossy, full color, more informative – and cost less! deadline too short. She helped us: develop a highly effective speaker Julia’s most lasting gift may be this: She lets us program to reach groups around the country; produce move forward with confidence that we have 21st- century tools to keep fighting for death with dignity. FINAL continued from prior page vital but contentious issue. Cynics predicted that the suicide rate would Final Exit Shock rocket. Data showed a year later that it had not done I had co-authored two books on the history and so – plus, more suicides were less violent. philosophy of euthanasia (with modest sales) but hit an Final Exit still sells worldwide in updated editions unexpected controversy with my 1991 book Final Exit. after 29 years in print; up to two million copies in No publisher in U.S.A. or U.K. would touch it at first, hardback, paperback, and Ebook. Translated into 13 so I published it myself under Hemlock’s imprint. languages, it is extensively pirated on the internet. Initial sales were mostly to Hemlock members, All on Record but when the Wall Street Journal published an article For 20 years, the Allen Library at the University describing it as “a suicide guide,” the book instantly of Washington in Seattle has been building America’s climbed to the #1 bestselling nonfiction hardback in largest archive of right-to-die materials, including all America. No one was more astonished than me! documents, newsletters, and books from Hemlock. The first print edition sold 550,000 copies, Keep that in mind when doing serious research. earning Hemlock $1 million net of expenses. In My greatest personal reward from 40 years many bookstores, customers lined up in the morning involved in this movement has been meeting and to snatch the day’s deliveries – and Hemlock’s working with the finest, most selfless and generous membership rocketed. bunch of Americans. I elected to immigrate here from Book earnings enabled Hemlock to finance (to the U.K. in l978 (now a citizen) and have never regretted the extent permitted by law) the upcoming citizen it. The darker side of America has not personally initiatives to legalize physician-assisted dying. To touched me, although I am keenly aware of it. assist the campaigns, Hemlock Society contributed This swansong notwithstanding, I’m still helping $1.2 million, also freely lending its mailing list. our cause, aiming to be on the scene until my end. Like Rachel Carson’s Silent Spring and Ralph © Derek Humphry 2019 Nader’s Unsafe At Any Speed, it was a break- Editor’s note: Derek’s memoir, Good Life, Good Death through book on an emerging social issue. (I kept the (Skyhorse, New York, 2017) is on Amazon or (signed copy) paperback and eBook rights for my support.) at https:// www.finalexit.org/ergo-store

Summer 2019 Newsletter Final Exit Network 3 FENFEN Notes 15 Years of

historyhistoryEditor’s note: On our milestone anniversary, it’s appropriate to look back at our past – to inform new members of our origins and remind long-time By Faye Girsh, FEN Advisory Board supporters how far we’ve come. inal Exit Network is a predominately volunteer organization that provides personal and 9th circuits but unanimously agreed that assisted support for individuals facing end-of-life dying was NOT a constitutional right. F A similar case in Florida (argued by FEN suffering. It’s an outgrowth of the Caring Friends program of Hemlock Society USA. Attorney Robert Rivas for Hemlock of Florida) was Derek Humphry started Hemlock in 1980 in Los denied by the state’s supreme court. Angeles following the success of his book, Jean’s These legal setbacks were discouraging, although Way, which tells of helping his first wife die after she Oregon had started to implement its Death with suffered a long fight with cancer. Hemlock Society Dignity law in 1997. At Hemlock, I felt that offering grew to 40,000 members with 80 chapters and moved a book to severely ill members was not enough, as to Eugene, Oregon. helpful as it was. Members who sought a peaceful Hemlock always had two goals: to help people end to their suffering needed personal, individualized prepare for a peaceful death, and to change laws to support and information. permit aid in dying. To implement this idea, we started the Caring In 1991, Derek published his still universally Friends program, which trained volunteers to visit successful book, Final Exit, the most important do-it- people in their homes and instruct them in peaceful yourself publication of its type (now in 13 languages methods of self-deliverance. In 1998, the first class of and its 3rd edition). He resigned as Hemlock 28 volunteers was trained, and more were added each president to continue writing and start ERGO year. Dr. Dick MacDonald was Hemlock’s medical (Euthanasia Research and Guidance Organization). director and compassionately oversaw the program Hemlock went without a leader for a few years while Lois Schaffer administered it efficiently from and moved its headquarters to Denver. In 1996, I the Denver office. became president. In that year, two important legal Meanwhile, the Hemlock board had decided to decisions occurred: Both the 2nd and 9th Circuit HISTORY continued on next page courts of appeal agreed that assisted dying was a constitutional right. In addition, Jack Kevorkian was telling the world why a doctor could – and should – help people who were suffering to have a good death. Janet Adkins, a Hemlock member with Alzheimer’s, was his first patient. At Hemlock, when desperate people called for an end to their misery, they were advised to read Final Exit. In 1997, the U.S. Supreme SUMMIT MEETING – Faye Girsh and Derek Humphry discussed the history of the U.S. right-to- Court heard arguments from the 2nd die movement in a lengthy, 2015 video.

4 Final Exit Network Summer 2019 Newsletter 21 major, end-of-life decisions By John Abraham, FEN Member 11) To name your healthcare power of attorney 1) To recognize that your days will end, and (advocate) who understands what you want begin to plan your life on that basis – accept or do not want regarding medical care. the reality of impending death. 12) To heal relationships that may need to be 2) To choose a physician who understands how mended. you wish to die. 13) Whether or not to carry (or update) life 3) How to change, or not change, your lifestyle – insurance. the way you live: activities, habits, etc. 14) Whether to obtain hospice support to assist 4) To do the things you have been putting off. you and your family. 5) Whether or not to receive psychological or 15) Whether to seek aggressive comfort care spiritual counseling. until death occurs. 6) To let your understanding of death intensify, 16) Where you would like to die. and improve your present relationships. 17) Who you want, or do not want, with you 7) To learn to talk more openly and comfortably when you pass. about dying. 18) To continue or stop medical treatment. 8) How you want to be remembered by family 19) To continue or stop eating and drinking. and friends. 20) To receive visitors or not during your 9) Whether or not to draw up (or update) a will. treatment – determine whom they would be. 10) To complete advance directives (living will, 21) Whether or not to apply for Exit Guide etc.) so those around you will know what you assistance from Final Exit Network if you want. are considering to hasten your death.

HISTORY continued from prior page change the name of the organization which, in 2003, Friends volunteer, chapter leader, and national board became End of Life Choices. After disposing of all member – met in Chicago to continue the work of things “Hemlock,” the board chose to merge with a Caring Friends, but calling itself Final Exit Network smaller organization in Washington state, Compassion (FEN). We shunned fancy offices and well-paid in Dying, run by Barbara Coombs Lee. The union administrators and became a virtual organization, now occurred in 2004 with the new name of Compassion based in Florida but with no building. FEN teamed and Choices (C&C), which was dedicated to physician with NuTech, an informal technological company that aid in dying for the terminally ill. discovered the inert gas method now recommended. The Caring Friends program was never restricted Compassion and Choices successfully continues to terminal patients, nor did it rely on medical means its mission to change the law, while dedicated, caring, that were difficult to obtain; also, they worked with Final Exit Network “Exit Guides” go anywhere in early Alzheimer’s patients. Caring Friends volunteers the country to be with people, at no charge, who were just Hemlock members – not doctors, usually desperately seek a peaceful way to die, even in states older, and trained to instruct patients in reliable and where Medical Aid in Dying exists. painless methods. Both FEN and C&C are 501(c)(3) not-for-profit The future of Caring Friends in the new organizations seeking to achieve the choice of a organization was unlikely to be friendly; Schaffer, peaceful death. FEN volunteers work on a medical MacDonald and I soon had our positions terminated. model, but will work with people who are not In 2004, a group of Hemlock volunteers – including necessarily terminal, including those suffering from Derek and I, and sparked by Ted Goodwin, a Caring early dementia.

Summer 2019 Newsletter Final Exit Network 5 FEN fetes Humphry; marks anniversary Dozens of FEN members – including those with vice president; and Marty Seidenfeld retired from the the Exit Guide Program, board of directors, and executive board to be on the advisory board. advisory board – convened in Chicago July 25-28 to • Client Services Director Lowrey Brown’s job mark the group’s 15th anniversary and honor Derek was made a full-time, paid position. Humphry for his decades of work and dedication in • Bill Schoolman will head the speakers’ bureau. leading the right-to-die movement. • Approval was given to update FEN messaging, Faye Girsh moderated a tribute to Humphry, live redesign the website, and adopt a strategic outreach and via video, who watched the proceedings from his plan. home in Oregon and spoke to those in attendance at Pointed discussion centered around acceptance the annual meeting. criteria for the Exit Guide Program and whether Some who couldn’t attend – including Barbara psychosocial characteristics should carry more Coombs Lee, Philip Nitschke, and Dr. Richard weight. No policy change was made, but the board MacDonald – sent video greetings to Humphry. did approve moving forward with development of a The board of directors took a number of steps: FEN Advance Directive for people with dementia. • Vice President Brian Ruder succeeded Janis Editor’s note: More news and detail from the annual Landis as president; Ron Liesemer was named acting meeting will be included in the fall issue of this magazine.

Provocative topics Blog by the Numbers

❏ 22,807 – Views from August 2017 through July 2019 spur blogging boom ❏ 1,546 – Average monthly views, June 2018 through June 2019 ❏ 641 – Highest weekly views in past year June 24-30 In early summer 2017, Gary Wederspahn, ❏ 2,195 – Highest monthly views, June 2018 (2,000 this June)* the FEN board member responsible for outreach, ❏ 55 – Average views per day this year (was 49 in 2018) contacted Coordinator Lamar Hankins about his ❏ Highest views per day in July 2019 (all but one on Monday) willingness to write for and moderate a blog for FEN. July 1 – 160 July 18 – 148 After some discussion, the two settled on a plan, July 8 – 148 July 22 – 140 and The Good Death Society Blog began on August July 15 – 138 22, 2017. ❏ 783 – Most views in one day, June 19, 2018** The inaugural post was an article titled, “When * Fewest views are in November and December free speech is a crime in Minnesota.” It analysed the ** Followed e-blast from FEN national office free-speech prohibitions that have hampered, though not eliminated, FEN’s work in that state. “Our main purpose is to publish material on death- Since then, contributors have written nearly and-dying issues, and to discuss the widest range of 100 posts about a wide range of end-of-life issues – end-of-life challenges and choices,” said Hankins. about one per week. “Our objectives include creating broader public Discussions have included: living and dying awareness, and discussion of critical issues through with dementia; problems faced by ALS sufferers; reading, commenting on, and sharing blog posts.” designing advance directives to get a desired Hankins also said he and Wederspahn hope to: death; making funeral arrangements without being Position FEN as a leading resource in the right-to-die exploited; answering right-to-die critics; words to movement; link blog readers to FEN’s website and use when discussing death with dignity; and a host of other outreach platforms; and develop archives of other end-of-life topics. reference/source materials for speakers and writers.

6 Final Exit Network Summer 2019 Newsletter FINALFINAL EXITEXIT NETWORKNETWORK Are you ‘linked in’ Board of Directors like FEN is? Brian Ruder, MS, President Ronald Liesemer, PhD, Acting VP By Kevin Bradley, Board Member Judy Snyderman, MBA, Treasurer Kevin Bradley, MDiv LinkedIn is the premier our new executive director. Janis Landis, MA online networking tool for It was a real-world success Cameron Linen, MTS, MS professionals around the world. story of how FEN can use Tom Tuxill, MD I’ve had a LinkedIn profile LinkedIn to quickly find Gary Wederspahn, MA for years, but it never occurred someone with specific skills. Advisory Board to me that it might be useful Now we need your help. Linda J. Banez to an organization run mostly We would like to use Huck DeVenzio by volunteers. Then I inherited LinkedIn to find well-qualified Ruth von Fuchs, MA board responsibilities involved volunteers for key positions and Faye Girsh, EdD with a pilot program to see what, to find speaking opportunities. Derek Humphry, Chair if any, benefits LinkedIn might 1) If you’re on LinkedIn, Richard MacDonald, MD Martin Seidenfeld, PhD have for FEN. “follow” FEN’s profile page. Wendell Stephenson, PhD I was in for a pleasant 2) If you don’t want to be on President Emeritus surprise. LinkedIn, you can still help by Lee Vizer, MA I didn’t have to do much finding out if any community, other than organize our first group, or organization you’re Executive Director official meeting, because involved with has a LinkedIn Mary Ewert, PhD volunteers extraordinaire profile, and then ask the Quarterly Magazine Christopher Sorkin and Kristin administrator to “follow” us. Jay Niver, MA Jochum had already done the 3) We’ll take it from there. If lion’s share of work: FEN’s you’re ambitious, be proactive to LinkedIn page was up and see if those groups might want running. a FEN speaker to present on the fVision f Christopher made a few right to die (in general), or on That any competent person tweaks and has been actively Final Exit Network in particular. unbearably suffering managing the page ever since. Be sure to let them know: an intractable In less than a week, Kristin There is never a fee for any FEN medical condition used LinkedIn to find Steve services. has the option Gleason, a FileMaker Pro expert This project actually inspired to die legally who supports FEN’s mission and me to update my LinkedIn profile and peacefully. lives in the Chicago area. He is and explore other networking fMission f now working with Mary Ewert, opportunities. Care to join me? To educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend their right to choose.

Summer 2019 Newsletter Final Exit Network 7 Aid in Dying Self-Controlled Death Physician Assisted Death MAiD Dignicide Hastened Death Authenasia Socraticide Euthanasia Assisted Suicide Deliberate Life suicide

Completion Death With Dignity What’s in a name? Self-Deliverance – William Shakespeare By Jerry Metz, MD, FEN Member • Our generally geriatric Is ‘Dignicide’ even affect insurance claims and religious status. e don’t commit generosity or love. We do crowd has already given Asian youth movement? When Gallup surveyed people in 2013 about the commit the ABCs of evil: Adultery, society gifts of creativity and the answer? propriety of physician assistance in dying, 51 percent Burglary, Crime. has nothing more to give. The debate over terminology in the right-to-die approved a question that mentioned suicide, while a WWhen we say someone committed suicide, we • Finally, as we know so movement has never been more spirited. Almost any By Huck DeVenzio, FEN member nearly identical question without that word drew 70 add that term to a list of ugly things, and we see what well, the family of someone use of the term “suicide” is becoming unacceptable Last issue, with an essay percent approval. as advocates push to avoid it – and sometimes are ponderous freight one word can carry. who exits is not ashamed, but from Derek Humphry, we Perceptions influence response. accused of resorting to transparent euphemisms. Here’s another word that makes heads spin, when proudly honors the patient’s solicited your opinions on Derek Humphry has written and moderated much Over the years, there has been a thesaurus of your lovely, 14-year-old daughter says, “Mom, I’m courage and determination. about it in his ERGO Listserve forum, and Lamar an alternative term that replacement candidates including exit, patient-directed pregnant.” The Bible says, “By Hankins is doing the same in FEN’s Good Death does not have negative death, life conclusion, deliberate death, rational suicide, You realize you had no idea what’s up in her life, their fruits shall ye know Society blog. connotations or effects. peaceful passing, self-euthanasia and others. and a cosmic dump truck has plopped a large load in the them” (Mat. 7:16), and many Humphry is one of the few who doesn’t seem Contrary to Juliet’s Several had virtuous points, but none seemed to be middle of your world. times the fruit of suicide is terribly upset at calling “a spade a spade.” His assertion that “a rose by snappy, brief, clearly understood, and positive. One word can carry enormous import, and suicide is bitter, even poisonous, often illustrious journalism career might explain why he’s any name would smell as Beginning in 2014, there was a global effort. U.S. that kind of word. enough to make the phrase more tolerant of candid, unvarnished verbiage. sweet,” the right-to-die attorney and activist Bill Simmons said, “I headed an There are three good reasons to oppose the use of “rational suicide” seem an I learned long ago how terms can be confusing. I movement has long been international group of right-to-die leaders trying to find “suicide” in the context of the essential service FEN oxymoron. had talked with my young daughter about euthanasia searching for a term to an alternative to suicide. We worked via internet over a provides. FEN people know better, after my father took his life to prevent cancer from replace suicide to describe period of many months. We started with a long list and 1) The word implies mental illness. If we believe but we have been slow to doing so. It was a couple of years later that she a planned, peaceful end to cut it down.” confessed, “I didn’t understand what ‘youth in Asia’ life is good, then surely the rejection of it must be crazy! come up with a substitute for suffering. “We couldn’t find a one-word substitute, which had to do with Gandpa’s death.” 2) The presumably misguided ending is a tragedy that loaded word, “suicide,” This is motivated by some of us wanted,” Simmons lamented. that has cut short a creative, productive life. It’s a loss to and we are accused of using – Jay Niver, Editor practical and compassionate Then one of the members dreamed up an apt word: society, and we grieve the loss. euphemisms. elements. dignicide. It has yet to catch on, but Simmons remains 3) Finally, suicide makes tongues wag and sprays A euphemism cloaks an ugly concept with a clever “Suicide” carries some heavy emotional baggage optimistic: “I think we could change the world. The a stain on the entire family – “They didn’t understand disguise that makes it socially acceptable. “My patient in western culture: It suggests violence, mental illness, right-to-die movement needs it.” her,” or, “They didn’t love him enough.” took early retirement,” is a euphemism. and unwillingness to continue living. That’s the opposite Let’s hear your thoughts. Send them to FEN’s All three conclusions are inappropriate in our “Medical Aid in Dying” is not a euphemism because of a quiet, rational death surrounded by friends for a quarterly magazine (www.finalexitnetwork.org), to situation: it is clear, direct, and unequivocal. person who would prefer to go on with life. the FEN Facebook page (www.facebook.com/groups/ • If a tormented terminally ill patient were to say, Let us commit to using MAiD. But there are also pragmatic benefits to an finalexitnetwork/), or add comments at the end of “Every day my condition is worse. I wonder what might alternative term. The societal stigma associated with articles on the The Good Death Society Blog (www. fail next. This is fun!” they would clearly be mentally suicide can have a great impact on survivors, and may thegooddeathsocietyblog.net/). ill.

8 Final Exit Network Summer 2019 Newsletter Summer 2019 Newsletter Final Exit Network 9 Aid in Dying Self-Controlled Death Physician Assisted Death MAiD Dignicide Hastened Death Authenasia Socraticide Euthanasia Assisted Suicide Deliberate Life suicide

8 Final Exit Network Summer 2019 Newsletter Summer 2019 Newsletter Final Exit Network 9 The Future of Assisted Good Endings Book Club Suicide and Euthanasia by Neil M. Gorsuch Reviewed by Huck DeVenzio At the author’s Supreme Court confirmation hearings, this writing attracted a lot of attention. It was held up by both sides as emblematic of candidate Gorsuch’s thinking. It’s well-written, intelligent, and scholarly researched in legal detail, as you might expect from a prominent jurist. Perhaps this review were better written by FEN counsel Robert Rivas, Physician-Assisted Death but let’s save him for a future clash with Justice Gorsuch. by L.W. Sumner The initial chapters deal with historical Reviewed by Huck DeVenzio precedents. But does it matter what Greek thinkers This worthy book presents wrote during the Punic Wars, more than 2,000 years arguments both for and against before the first dialysis machine? Medical Aid in Dying (MAiD), The author scrutinizes legal minutiae, dissects though Sumner uses the older something called a perfectionist view of autonomy, terminology, Physician-Assisted examines the harm principle, and rigorously explores Death (PAD). It looks from a substantive due process – but he seems to lack variety of viewpoints, giving heart. bipartisan coverage but ending up clearly in favor of The book doesn’t get to the crucial question: suicide as a means of relieving suffering. What is the right thing to do? What’s best for your The author is a Canadian philosopher, ethicist, suffering mother? Is it okay to impose your values on and author. He says his book is “a leaner, stripped- someone of a different religion or beliefs? down version of my earlier book, Assisted Death.” The author makes some strong points, but where’s If true, the earlier work must be very detailed, the humanity? The care that anti-choicers express in because one-quarter of the newer volume is notes, protecting the poor and the disabled from abusive bibliography, and the complete 1994 Oregon Death outcomes (the slippery slope argument) appears With Dignity Act as amended in 1997. as paternalism: I’ll look out for you since you are The book is subtitled, “What Everyone Needs too poor or disabled to do so for yourself. Give me to Know.” In addition to political considerations, freedom to choose, not paternalism. the book addresses common diagnoses of subjects The Bible, which is credited with weighing in on (“Cancer is the overwhelmingly most frequent just about every topic, is apparently mum in this case [nearly 80%]…”) and reasons for MAiD (“Of the 28 (“… the Bible nowhere explicitly forbids suicide”). possible reasons, current physical symptoms such as Nor does Gorsuch acknowledge the influence of pain ranked quite low…’). religious dogma in this debate. Sumner seems particularly irked by religions that And some of his views would have to be softened want to impose their beliefs on others, writing, “In a now that 10 U.S. jurisdictions permit Medical Aid in religiously pluralistic society, public policy governing Dying, and more medical and legal associations have the conduct of all cannot be justified by reference to gone neutral, as opposed to just Oregon having legal faith-based premises shared only by some: to violate MAiD when he started writing the book. this constraint is to violate freedom of conscience. And not just freedom of religious freedom.”

10 Final Exit Network Summer 2019 Newsletter Is it time for DNR to

By Amber Barnato The ability to designate and Maxwell Vergo RIP a preference against CPR is

he term DNR (Do Not critical for patient Resuscitate) means autonomy. Eliminating that a patient should the term DNR and T replacing it with “no not receive cardiopulmonary resuscitation (CPR) in the CPR” would make it event of cardiopulmonary more transparent to arrest (i.e., when the patient has patients, families and died; is unresponsive, has no pulse, and is not providers what, exactly, is being withheld. breathing). While this change will be burdensome for the But many patients and healthcare providers state governments, hospitals and nursing homes misinterpret a DNR order to mean that no life support that would need to modify policies, forms and should be given in the event of clinical deterioration information technology, healthcare systems make (i.e., the patient has not yet died but is getting much changes all the time for even less compelling reasons. sicker). For example, the U.S. recently adopted a brand-new Efforts to change the terminology to “do not diagnosis and treatment code categorization system attempt resuscitation” or “allow natural death” try to improve billing detail, estimated to cost more than to solve some of the misunderstandings, but only $1 billion. confuse people further. The added “attempt” is So, to reduce confusion and medical errors, inserted in the former to remind us that CPR is “DNR” is a term that should be laid to rest. usually not successful. “Allow natural death” seeks – Excerpted from The Hill [Washington, DC], May 5, 2019 to remind us that the procedure is applied when someone has already died. A more obvious solution would be to name it what it means: no CPR.

WISHFUL THINKING – Despite the supposed clarity of a DNR tattoo, conflicts can arise in a facility or hospital where medical orders must be initiated and signed by the attending physician.

Summer 2019 Newsletter Final Exit Network 11 FROM THE PRESIDENT Arriving Words By Brian Ruder FEN Board President

irst, I want to thank Janis, meet client and organizational the FEN Board of Directors, needs – and it means trying Fand other FEN leaders for to continue to lower our creating the strong organization we organizational risks. have today. In my years working in • Because of your continued the corporate world, I found support, FEN is in good financial that good communication is shape. one of the keys to a successful • New Executive Director organization. Over the next Mary Ewert brings a history of year, we will be reviewing all experience and activism. our messaging to make sure we • Our Guide Program is are clearly communicating our in excellent shape thanks to value proposition and goals to experienced leaders, coordinators members and supporters. and guides. We want people to know • And we have a very capable what we are doing to provide board that is moving FEN forward in a number more options and opportunities for managing of areas, including research and outreach. their end of days. We hope to provide more As your new president, I want to assure newsletter articles from our volunteers about you that my primary goal is to build on the their experiences and work efforts, in addition to organization we have today. As we continue stories from members and supporters. the transition to a more traditional executive To improve communication with prospective director-led organization, I have two primary members, we will be upgrading the FEN website goals for our organization: The first is to to make it consistent with our existing vision, continue to make the organization as sustainable mission, and goals. We also hope to make it as possible; the second is to continue to improve easier for members to renew their membership our communications to members and non- and make donations, as a way to reduce our costs members. of membership and processing donations. To make our organization more sustainable, You’ll hear more in coming months. we will focus on managing costs very carefully. Finally, we will continue to focus on I understand that we must be good stewards of providing compassionate education and support our funds and be responsible to you for how we to eligible people interested in using our services. spend the money you provide. The other aspect of sustainability is to make Brian succeeded Janis Landis as board president sure we have an organization that can provide at the FEN general meeting July 26 in Chicago. He our services over time. This includes ensuring has been a Senior Guide and board member since that we have sufficient trained guides and staff to 2017 and lives in Portland, OR.

12 Final Exit Network Summer 2019 Newsletter Guiding to the exit

The Exit Guide Program – what’s required of applicants

n a plane, “exit guides” would be travelers must, at the very least, respect their eventual decision. seated nearest to the emergency doors. In ❑ Applicants must have at least one medical issue Final Exit Network, an Exit Guide plays a that severely reduces their quality of life – but they vital,O intimate role in peoples’ lives – and deaths. need not be terminally ill or within six months of death. Nothing is more central to FEN than the Exit They must meet at least one of these criteria: Guide Program. “It’s the heart of what we do,” said 1) Serious disease – like cancer, multiple sclerosis, Client Services Director Lowrey Brown. “We field a cardiopulmonary or other organ-related problems; lot of questions about how it works.” 2) Chronic, severe, somatic pain – ailments more She noted how important it is for FEN members difficult to diagnose,such as complex regional pain and the public to know whom FEN serves and how to syndrome and fibromyalgia; apply for the Exit Guide Program. 3) Loss of selfhood through dementia – those who ❑ The time to apply for Exit Guide support is wish to hasten their death while still competent; within a year of wanting to self-deliver. “We encourage 4) A constellation of conditions that significantly everyone to plan ahead and consider difficult decisions diminishes life’s quality – typically age-related, but before being faced with them,” Brown said, “and our including chronic maladies like diabetes. coordinators will happily steer those looking ahead Guide support for those who primarily have toward resources for doing so.” mental-health diagnoses are not currently eligible. ❑ When someone inquires about Guide services, ❑ Working with coordinators, applicants submit the message is forwarded to a coordinator – an end- a statement about their condition and how it impacts of-life expert who counsels on more than just the them, along with medical records of support. When program. “They work with callers to see if they might coordinators receive the paperwork, they schedule an be eligible for Guide support,” Brown explained. “If interview that gives a bigger picture of circumstances. so, they shepherd applicants through the process.” ❑ The Medical Evaluation Committee reviews ❑ FEN membership is not required to apply for the application to ensure it falls within one of the program; it also no guarantee of being accepted. the required categories. If so, it is accepted for ❑ The Exit Guide Program serves competent assignment, and a Guide is appointed to the client. adults who consider a life-ending decision and are “Our process is one of continual evaluation,” able to self-deliver without assistance. They must Brown said. “Being assigned an Exit Guide is only communicate with family and loved ones about the the first step, and FEN Guides are always reassessing choice they’re considering, and those individuals every situation.”

Summer 2019 Newsletter Final Exit Network 13 New editor lost 2 loved ones in opposite ways

Jay Niver, the new FEN quarterly magazine editor, is a recently retired journalist and public-relations consultant who became involved in the right-to-die movement by supporting and documenting his father’s “final exit.” Sam Niver had terminal prostate cancer DRAMATIC DECLINE – Editor Jay Niver and his wife, Lee anne, are pictured in the in 1998 and was determined to make a inset photo taken in October 2016. The other photo shows her 13 months later, at half statement about death with dignity. He her weight, after 22 weeks in hospital and hospice care. asked two of his physicians for prescrip- tions for Nembutal, which gave him all he needed Niver earned a B.S. in Journalism from for a front-porch demise overlooking a coastal bay Northwestern University and an M.A. in Teaching in North Carolina. from The Citadel in Charleston, SC. He worked The state has no law against assisted suicide, so years for The Cleveland Clinic, Medical University Jay and twin sister Gretchen were with Sam to help of South Carolina, and AMI East Cooper (SC) and support him. The Raleigh News & Observer Hospital. As a freelance consultant, he addressed published a Sunday, front-page feature story on issues including at-risk youth, addictions, domestic Sam’s choice, and his children produced an award- violence, and public housing. winning documentary film about his life and death. His late wife, Lee anne Hanson-Niver, suffered An Ohio native, Jay worked 30 years in the from idiopathic pulmonary fibrosis, a progressive, Carolinas before moving to Canada and returning debilitating disease that impacted her last years of after his wife’s drawn-out surrender to terminal life; Niver quit work to provide full-time care. disease. He has extensive experience in corporate “We went to the E.R. on May 29; we were in the and healthcare communications, as well as editing hospital or hospice all but two nights until she died newspapers and specialized publications. in November,” Niver said. “We lived in Canada – we could have had Medical Aid in Dying. She relied instead upon her evangelical faith. “I’ve seen both ends of the spectrum: my father, who was proactive, and my wife, who couldn’t accept the inevitable.” Niver said he’s flattered to assume FEN newsletter duties. “I’ve got big shoes to fill after all Huck (DeVenzio) did with the magazine. I hope to continue the direction he and the board were taking with the publication,” he added. “FEN is built upon volunteers and dedicated to its clients. I hope we can continue to share their stories and laud the work of our Exit Guides.” “FEN has found a well-qualified person,” said DeVenzio, the former editor. “He’s an accomplished FATAL DOSE – Sam Niver drinks a Nembutal concoction in 1998, to writer and editor who has seen first-hand both a die peacefully before his metasticized prostate cancer can kill him. A suicide note is pinned to his shirt. peaceful exit and a tragic demise.”

14 Final Exit Network Summer 2019 Newsletter T H BE a c k Pa g e Two decades is long Maine, N.J. approve MAiD enough to exclude so many In a rare, relative flurry of success, two more states – New Jersey and Maine – passed laws to allow FEN Senior Medical Advisor Dr. Richard MacDonald, Medical Aid in Dying (MAiD) between April and June. former Hemlock Society medical director, recently sent the following letter to Compassion & Choices in response to That brings to 10 the number of U.S. jurisdictions their appeal for contributions. He had not received a reply where MAiD is permitted. Ironically, it’s in the shadow by the time this publication went to press. of a bombastic, “pro-life” president – inspiring right- wing legislatures across the country – that more states I, and many others who have been involved in are moving toward “death with dignity.” the effort to provide choice near the end of life, have In 20 years between Oregon’s groundbreaking become dissatisfied with C&C leadership. law and Donald Trump’s election, three states Many of us have been truly active since the 1990s enacted MAiD legislation (Washington, Vermont and before. The reasons I will no longer support C&C and California). Less than three years since Trump are important ones ... was voted president, four states and the District of It has become evident that C&C will not change Columbia have done so. the type of law they promote in state after state, and Proposed legislation was debated but defeated that law is not a progressive one. this year in a number of states, and the Connecticut Insisting that no changes be made for the benefit State Medical Society voted in favor of “engaged of those who are dying and looking for a peaceful, neutrality” after years of opposition. sure, and timely dying process is regressive. And that The U.S. population is getting older with less is what C&C leadership has shown by opposing the tolerance for suffering – but there’s still been no suggested important modifications of the Oregon law, accommodation for patients with slow-progression which fails to include those patients with the most diseases like ALS or Alzheimer’s (see letter at lingering, quality-of-life- left). In that Oregon, Bruce Yelle and End Choices destroying symptoms. fought hard to make MAiD available to people with I refer especially to irreversible illness, even if death wasn’t imminent. degenerative neurological He had modest success: eliminating the required conditions that will not be 15-day waiting period for patients who meet all covered by the older law. requirements for MAiD, but who might die short of Sadly, laws like Oregon’s that time. original one are being insisted upon in states that pursue legislation. And, Dr. Richard MacDonald Better self-deliverance info incredibly, C&C leaders are urging opposition to ERGO (Euthanasia Research & Guidance modifications, putting them in alliance with pro-life Organization) has updated and improved its top- groups, Not Dead Yet, and the Catholic Church. selling e-document, How To Make Your Own Inert I would hope that some influential C&C board Gas Hood Kit, by Derek Humphry. members – and staff who are in important, paid This is good news since there is no longer positions – will urge a change in the regressive anywhere a constucted hood kit can be obtained. actions of C&C leadership. It is available only from the nonprofit, ERGO Patients suffering from ALS, MS, Parkinson’s and Bookstore (http://www.finalexit.org/ergo-store/). other neurological conditions – including dementia as a digital download PDF. It is clearer and better – are hoping for compassionate changes to existing illustrated, but if you already own the prior document, laws and passage of more-progressive, new ones. the newer version does not contain any revelations. They, too, have a right to a peaceful dying process This DIY manual is to be considered by competent when they decide their quality of life demands it. adults with terminal or degenerative illness.

Summer 2019 Newsletter Final Exit Network 15 Final P.O. BOX 10071 TALLAHASSEE, FL 32302 Logical

Exit to the

Network last

Susan Bay Widow: Nimoy wanted end to suffering In February 2015, the actor known for playing Star Trek’s iconic Mr. Spock died of complications from chronic obstructive pulmonary disease (COPD), brought on by years of heavy smoking. Leonard Nimoy spent a substantial part of his final years campaigning against smoking. But, according to his widow, Susan Bay, in a May interview with Inside Edition, he may have also held other beliefs that appeared in his waning days. She said Nimoy asked his nurses to end his life. “Leonard believed in dying with dignity. He didn’t want to be confined to a wheelchair and not able to breathe,” she recounted. Apparently, his caregivers added more morphine to his medication, relieving the discomfort and possibly hastening his death. As his fictional character might say, “It’s only logical.”