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In 2007 my father was slowly and painfully dying from side-effects of Parkinson’s disease. I am sharing here an astonishing newspaper article—written by columnist and registered nurse Richard Davis—on my dad’s and family’s experience. The article was widely distributed around the world and I still occasionally receive requests for a copy, so I am reposting it here.
April 27, 2008
Richard Davis, © 2008
Brattleboro Reformer: May 23
BRATTLEBORO- Newspaper obituaries provide a few glimpses into the lives of people. They serve to provide friends and relatives with news of a death and the details of plans for funerals and memorial services. Rarely, if ever, do obituaries describe the way a person died. Perhaps it is too morbid for most people to contemplate, but how we die is just as important as how we live.
“Joshua Mark Segar, 84, died peacefully at his home on Tuesday, December 11, 2007. Mr. Segar (a.k.a. Josh, Joshie, Jeff, Joe or Mark) was born in London, England on Dec. 21, 1922. At the age of 13, in order to help support his family, he was forced to leave school and was apprenticed as a barber.
During World War II he served in the Rifle Brigade for five years without a break, fighting in North Africa, Italy and Germany. On his return to London, he was able to open his first barber shop. On weekends he played drums in a dance band and as a session musician for Stephane Grappelli, among others.
In 1948 he married Lilly Solley, the love of his life. Segar became a successful small business man, eventually owning a chain of hairdressing salons and a flourishing electric shaver supply and repair business.
He was the president of the British National Hairdressing Federation and the Hairdressing Council for many years. He loved opera, traveled extensively and was a lifelong learner of art and art history. He was kind, thoughtful, humorous, hard working, loving and generous, a devoted husband and loving father, grandfather and great-grandfather.
In 2004 he moved from England to Brattleboro in order to be closer to his children. During three years of declining health, he showed great fortitude along with his ever-present wit.”
Reading Segar’s obituary, we can get a sense of what kind of life he led. But in order to understand this complex man it is just as important to understand how he died. That part of his life began with the onset of symptoms of Parkinson’s Disease.
Parkinson’s Disease is a progressive degenerative neurological condition that results in a wide variety of symptoms which can vary in severity among individuals. It is not considered a life-threatening disease in the strictest sense. Segar coped with the disease for a few years, but in 2007 the symptoms became severe and the quality of his life was deteriorating.
His wife of 55 years had been dead for two years and he told his family that he always thought he would die before his wife. Segar enjoyed a loving relationship with his family in the U.S. His 56 year old son Adrian and his family in the Brattleboro area and his 47 year old daughter Alison and her family in Burlington stayed close to their father.
His greatest pleasure came from his family and perhaps that is why Thanksgiving marked a turning point for him. According to Adrian, “We spent this Thanksgiving at our home—my wife, my dad, my older daughter and her family. Thanksgiving is our favorite family holiday, but this Thanksgiving was different. Now dad could barely swallow, he was in serious pain much of the time, and was worried about his incontinence. His fear of choking was too much for him to enjoy eating his food, cut up as it was into tiny, almost indistinguishable bits, and his other Parkinson’s symptoms overwhelmed his ability to delight in his two adorable great-granddaughters. After five hours, miserable, he asked me to drive him back to his apartment.”
“The next morning he called me. In a trembling voice, he told me that ‘he didn’t want to continue like this’, and that he wanted to stop eating and drinking.”
This was not a quick decision on the part of Joshua Segar. He was losing the pleasure of being alive and he wanted to be able to have control over the manner and time of his death. He did some research and found a method to end his suffering that he believed would cause the least amount of pain for his family while allowing him to end his suffering in a perfectly legal way.
It’s called terminal dehydration or “patient refusal of nutrition and hydration” (PRNH) and is believed to be a commonly used method for a person to end their life. Statistics are nearly impossible to find, but there is a great deal of anecdotal evidence from health care professionals that terminal dehydration is relatively common.
This writer, a registered nurse, has cared for a number of people over the past 30 years who have chosen this way to end their lives. The public perception of withdrawing food and water is one of great suffering. The reality is quite different. Most people who stop eating and drinking in an effort to end their lives die peacefully and are given the time to say goodbye to friends and family.
According to Ira Byock, M.D., one of the most respected experts in hospice and palliative care, writing in a 1995 article in the “American Journal of Hospice and Palliative Care”, “The general impression among hospice clinicians that starvation and dehydration do not contribute to suffering among the dying and might actually contribute to a comfortable passage from life. In contrast the general impression among the public and non-hospice medical professionals is that starvation and dehydration are terrible ways to die.”
Byock goes on to explain, “A more extensive review of the scientific literature relevant to starvation and dehydration appears in an article by Sullivan entitled, ‘Accepting Death without Artificial Nutrition or Hydration’. Published studies of healthy volunteers report that total fasting causes hunger for less than 24 hours. Ketonemia (the burning of the body’s fat stores) occurs and is associated with relief of hunger and an accompanying mild euphoria. When ketonemia is prevented by small feedings hunger persists, explaining the obsession with food commonly observed during semi-starvation occurring in times of famine or war. Animal studies also suggest that ketonemia may have a mild systemic analgesic effect. Experimentally induced dehydration in normal volunteers may report thirst, yet this sensation is consistently relieved by ad lib sips of fluid in cumulative volumes insufficient to restore physiologic fluid balance. One study of healthy subjects suggests there is a decrease in the severity of experienced thirst associated with older age.”
Another critically important aspect of terminal dehydration is that it does not require professional help and it does not trigger any legal issues. As Byock explains, “Unlike physician-assisted suicide, refusing to eat or drink is a purely personal act. While it may require information, the decision obviates the need for physicians, nurses or other agents of society to participate. After adequate discussion, and in the context of continued caring, at some point the patient’s choice becomes ‘none of our business’.”
Adrian collected his thoughts after hearing his father’s desire to end his life and wrote, “When dad told me of his desire to die by stopping eating and drinking I was shocked, but I knew I had to take him seriously and I knew right away that he must have been thinking about this for a long time. Although his Parkinson’s had caused several short-term memory issues, his ‘big picture’ thinking had always been and was still in superb shape. I told him that I took his desire very seriously, but we needed time to understand the implications, and we wanted to support him to the best of our ability, and we needed to learn what that support might entail. I asked him to wait while we did this research, and he agreed. He asked me to work as quickly as possible.”
“For the next two weeks my wife and I worked hard. We discovered that dad’s desire is called Voluntary Terminal Dehydration (VTD), that it is legal throughout the U.S., and, provided that the requestor is competent to freely make the decision and is not clinically depressed, VTD is medically ethical and should be supported with appropriate palliative care. We also learned that VTD, when supported with palliative care, seems to involve minimal discomfort.”
“After discussion, including a session with dad alone, Dad’s GP, neurologist, and cardiologist all supported his decision, and his GP
authorized hospice care through the Visiting Nurse Association and Hospice of Vermont and New Hampshire.”
Adrian’s sister Alison reacted differently to her father’s decision. She is a social worker and said that her father’s decision was ethically problematic for her as a daughter and a social worker.
Alison also believed that there was a high probability that her father may have been depressed and she felt he should have been treated for depression before carrying out his plan. She wrote a letter to her father asking him to try anti-depressants and to see Parkinson Disease experts before going through with his plans for death.
She may have never fully come to terms with the plan for terminal dehydration but she respected her father’s courage saying, “I think my dad was incredibly brave to do what he did, whether he was depressed or not.”
In response to her letter to her father he wrote back,
Thank you for your nice letter.
I do not want to take anti depressants.
I want to carry on with my plan to end my life soon.
I love you deeply with all my heart.
Joshua Segar’s last meal was his favorite, calves liver. His own personal last supper was the last time he ate or drank and he died one week later. His family was comforted by the care they all received from the local hospice, visiting nurses and private caregivers.
Alison noted that when her father made his final decision, “… he became animated, as if he was going on a trip. He called friends and relatives of his decision.” Joshua received necessary comfort care with low doses of morphine and ice chips to soothe his dry lips and mouth.
Byock has had many years of experience with death and dying and his perspective is particularly relevant in the Segar family’s situation. “Clinically, for a number of people at the very end of life, the decision to refuse food and fluid may not arise from depression or emotional denial as much as from a felt sense of ‘being done’. Most such persons I have encountered one way or another expressed a sense that eating or drinking were no longer relevant to their situation. They were far along in a process of withdrawal, having turned their attention inward or ‘beyond’. Even here the option of PRNH has important advantages over complying with a patient’s request to be killed, for it allows the clinician’s attention to remain focused on relief of suffering — physical, psychosocial and spiritual. It requires — or frees — the clinician to remain vigilant for treatable depression and to remain, in humility, open to the possibility of unexpected opportunities for the person to again discover value in the life that is waning.”
The Segar family said they never noticed that their father experienced discomfort as he died. He became weaker and after three days he drifted into his final sleep. Alison was with him when he died and she said, “It was peaceful and it was beautiful.”
From September 2002 through November 2009 I kept a journal, writing each day before going to bed. Every once in a while I’ll pick one of the five thick notebooks I filled during those seven years and read some entries at random.
Why do I do this?
As my wife was leaving to attend a Marlboro Music Festival performance, our five-year-old grandson asked her where she was going.
“To a concert.”
“I know what that is,” he exclaimed. “It’s a stage. Are you going to be on it?”
“No,” she said, amused.
“Then why are you going?”
Image from the Marlboro Music Festival archive
Careercast.com rates “Event Coordinator” the 8th most stressful job of 2015. While we can take this precise ranking with a large grain of salt, it’s true that meeting tight deadlines, paying careful attention to a myriad of crucial details, handling in real-time everything that doesn’t go according to plan, and—despite all this pressure—satisfying clients & attendees are tasks at which relatively few souls excel.
Even when we give up being event organizers and go as attendees to our own profession’s meetings, they’re invariably scheduled during regional off-peak seasons, when venues don’t have bigger fish to fry (or freeze). So we roast outside in the summer and shiver in the winter.
And yet many of us love this profession. Read the rest of this entry »
“You exist as a consequence of people seven generations ago who were willing to proceed as if a day would come when you and yours would be in the world and they’d be long gone, and you somehow picked up an ember of that and safeguarded it until it caught a spark. And maybe that turned into your life’s work, but you can’t claim to be the author of it. You’re on the receiving end, and your job is to have the humility of a broken-down jalopy. So you’re not going to make a lot of claims for yourself, but you can say you have a sneaking suspicion this has been around before, and you’re a part of some kind of tradition.”
“…when I was working in palliative care…I realized that if I was going to serve these dying people well, then I couldn’t wait for anyone to ask me to do it.”
Are you waiting for permission for your mission?
So many conferences are a collection of unrelated sessions. But the June 2015 PCMA Education Conference in Fort Lauderdale showed how a coherent set of meeting goals can be embedded in a congruent conference arc, improving learning and connection amongst attendees. Here’s what PCMA did.
Although PCMA asked me to be the “conference facilitator” and “connect the dots” for EduCon, most of the credit for the conference design goes to the PCMA team. Pre-conference collaboration with the team was a pleasure.
My consequent jobs over the three days of conference sessions—which boasted a record 675 attendees, plus several hundred following the live stream of portions of the conference—were to:
Being up on stage so much, interviewing, and providing event continuity for as many as a thousand people was a new experience for me—definitely risky learning! Connecting the dots immediately after presentations is hard when you don’t know what presenters are going to say!
When I accepted the offer of facilitating the conference, I only had a rough outline of the presentations, and I wondered about the content/learning arc of the event. To my pleasant surprise, as the event design unfolded, EduCon delivered a coherent set of sessions that shared common themes around predetermined goals.
At the opening I told a story and shared the EduCon design goals: experiential learning, risky learning experiments, and meaningful engagement. I’ll use [EL], [RL], and [ME] respectively to indicate how these three themes were woven throughout the event.
John Medina’s opening session immediately touched on some of these themes. He described how prospect-refuge theory suggests that a mixture of private and public spaces provides an optimum environment for events, balancing the needs for safety [RL], frankness, growth and confidentiality with the openness required to spread content.
John also spoke about the importance of high Theory Of Mind—the ability to reason about the mental states of others, what some might call empathy—for creating effective work teams that have high collective intelligence. (There’s a great test of your Theory of Mind ability Reading The Mind In The Eyes take it for free here!) It turns out that women have better theory of mind than men, which is perhaps why there are so many female meeting professionals—empathy is important in our industry [ME].
Interviewing John—who must surely be the easiest person in the world to interview—was a blast! I had 15 minutes with him on stage, followed by 75 minutes in a breakout. For the breakout I simply had the audience sit in curved theater seating facing John and me plus a couple of empty chairs, and had audience members with questions come up to the front of the room and talk with him. We could have easily spent another hour with John.
Read my earlier post to learn more about the session crowdsourcing experiment I facilitated the following morning, which incorporated all three goals for the event [EL] [RL] [ME]. A few of the sessions chosen: women’s leadership in the event industry (described to me afterwards by several participants in glowing terms), cultural issues in international meetings (run by Eli Gorin, who seemed very pleased), and selling sponsorship (held in the round). This 26-second video gives another perspective.
After lunch I facilitated a personal introspective breakout session [EL] [RL] [ME], which provided participants the opportunity to think about what they had experienced so far, how their experiences might impact their life, and what changes they might want to make as a result. Afterwards, I received the same feedback independently from many people—they had gone into the session thinking they had little to say, and discovered during the process that there was a lot to talk about and get excited about. I have heard this kind of feedback for many years now, but it’s still gratifying to hear the conversation volume rise steadily and observe the palpable reluctance of people to leave their small groups when the session is over.
I attended a few of the other breakout sessions during the conference, and observed a good mixture of [EL], [RL], and [ME] in all of them. Though I can’t be sure that those I missed followed the same path, the interactivity of the sessions I witnessed was unusually high for a meeting industry conference, and all the presenters I talked to had incorporated trying something new during their sessions.
The second plenary speaker, Sarah Lewis, author of The Rise, spoke to several themes related to the “gift of failure”:
On the final day of EduCon I ran a public evaluation of the conference in 45 minutes using plus/delta. Having attendees publicly evaluate a conference they have just experienced was clearly an [RL] activity! I think it went well; the scribes’ Google doc summary (projected in real time as the session took place) gives a taste…
The first question Sarah was asked at the conclusion of her talk was on overcoming fear [RL], which segued nicely into the subject matter of the closing session by Mel Robbins, author of Stop Saying You’re Fine. Mel delved deep (and interactively) [ME] [EL] into our fear of change and introduced her 5 second rule—if you have a game-changer impulse, act on it within five seconds or else it dies [RL]—another formulation of improv’s “say yes”.
Mel closed with a powerful call to action, a key component of a compelling conference arc, to take ownership of our lives. After such a powerful session, I kept things short with my closing remarks, pointing out specifically how PCMA’s conference goals had been achieved, and then asking the audience to stand and applaud themselves, as the people who, collectively, through their own interactions, risk taking, and engagement had made the achievement of those goals possible.
It felt good!
Awesome photo of me at 2015 PCMA EduCon taken by and licensed from Jacob Slaton!
Here’s a story I told at the opening of the 2015 PCMA Education Conference:
“The EduCon organizers asked me to say a little about the conference format, and I thought about when I was a teenager, and loved to go to parties and dance. Then something happened, I don’t remember what it was—probably something incredibly embarrassing involving a girl I liked—and I became self-conscious and stopped dancing.
I stopped dancing for 40 years.
In 2003 I go to a workshop, and if you had told me beforehand that I would dress up in costume there and dance, solo, in front of an audience I would have a) said you were crazy and b) skipped the workshop.
I’m very glad I wasn’t warned, because at that workshop, when I experienced dancing again, I remembered that I love to dance—and I’ve been dancing ever since.
If I had been reminded at the workshop that I used to like to dance, it wouldn’t have made any difference.
All the lecturing in the world wouldn’t have shifted my belief that I really didn’t like to dance any more.
I had to experience dancing again.
I had to get on my feet and dance!
Now, we’re not going to ask you to dress up and dance at this conference—unless you like doing that, in which case we’ve got the Fort Lauderdale Pool and Beach Party tomorrow night!
But what we are going to do at this conference is to give you plenty of opportunities for participative engagement—to experience things that we think may be useful for you in your lives and work.
In addition, this conference is full of experiments with a variety of learning environments and methods. We are proponents of risky learning—Sarah Lewis & Mel Robbins—will be exploring this in their sessions.
And, in our crowdsourcing experiment tomorrow, you’ll get to choose what you want to learn about, discuss, share, and connect about.
So our hope and desire is that, at EduCon, you will:
– be open to your experience, with a willingness to learn from each other; and
– be a resource to your peers.”
It was my hope that sharing a revealing story in front of a thousand people at the start of this conference would model openness amongst attendees for what followed. Based on the feedback I received during the event and my observations of the level of interaction and intimacy that ensued, I think my hope was realized.
Right after the 2015 PCMA Education Conference Tuesday breakfast, I facilitated an experiment that allowed 675 meeting planners to choose sessions they would like to hold. In 45 minutes, hundreds of suggestions were offered on sticky notes A small team of volunteers then quickly clustered the topics on a wall, picked a dozen, found leaders, and scheduled them in various locations around the Broward County Convention Center during a 90 minute time slot after the lunch the same day. The experiment was a great success; all the sessions were well attended, and, from the feedback I heard, greatly enjoyed and appreciated. Many people came up to me afterwards and told me how surprised they were that such a simple process could speedily add 50% more excellent sessions to the 21 pre-scheduled sessions.
All of us who plan meetings have an understandable desire for everything to be perfect. We strive mightily to not run out of coffee, comprehensively rehearse the show flow, allow for rush hour traffic between the day and evening venues, devise in advance alternative plans B -> Z, and anticipate a thousand other logistical concerns. And every planner knows that, during every event, some things will not go according to plan, and we pride ourselves on dealing with the unexpected and coming up with creative solutions on the fly. That’s our job, and we (mostly) love doing it—otherwise we’d probably be doing something less stressful, e.g. open-heart surgery.
Aiming for perfection is totally appropriate for the logistical aspects of our meetings, but when applied to other aspects of our meeting designs—little things like, oh, satisfying meeting objectives—we end up with meetings that are invariably safe at the expense of effectiveness.
Here’s what the guy I quote more than anyone else in this blog has to say on the topic of perfection:
Perfect is the ideal defense mechanism, the work of Pressfield’s Resistance, the lizard brain giving you an out. Perfect lets you stall, ask more questions, do more reviews, dumb it down, safe it up and generally avoid doing anything that might fail (or anything important).
—Seth Godin, Abandoning perfection
We took a risk on a less-than-perfect outcome at our PCMA Education Conference crowdsourcing experiment. “What if hardly anyone suggests a topic?” “What if one or more of the participant-chosen sessions turns out be a dud, or nobody shows up?” “What if we underestimate the popularity of a session, and the scheduled space is too small to hold it?” (In fact, due to the limited locations available, we had to hold several sessions in one large room, and there was some auditory overlap that had to be minimized by a quick seating rearrangement. Lesson learned for next time!)
This is a superior kind of learning—risky learning. We try new things with the certainty that we will learn something different, perhaps something important that we would not have learned via a “safe” process, and we are prepared for the possibility to “fail” in ways that teach us something new and fresh about our process.
I’ve been running crowdsourcing of conference sessions for over twenty years, so I was confident that there would not be a shortage of session topic suggestions. But I had never before run crowdsourcing with 600+ participants. Could I get their input in 45 minutes? Would a small group be able to cluster all the suggestions in another 30 minutes, pick out juicy, popular topics, and then be able to find session leaders & facilitators and schedule all sessions before lunch? We took a risk trying new things, and I appreciate the conference committee’s support in letting me do so. The end result was a great learning experience for the participants, both in the individual sessions offered and the experience of the process used to create them. And we learned a few things about how to make the process better next time.
So how much risky learning should we incorporate into our events? There’s no one right answer to this question. Ultimately, you have to decide what level of risk you, your clients and your participants are willing to accept—and a healthy discussion with all stakeholders will help ensure that everyone’s on board with what you decide. But, whatever your situation, don’t aim for perfection, or playing it safe. Build as much risky learning as you can into your events, and I think you’ll find the resulting outcomes will surprise and satisfy you.
It is an incredibly fulfilling experience to be able to not only participate in a conference but to shape its future.