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        Barney's version: Observations from the edge
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        Barney's version: Observations from the edge
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Extract

My good friend and colleague Barney Sneiderman died yesterday. A few months ago he was diagnosed with pancreatic cancer; the day before yesterday, after failed trials of chemotherapy and staying at home—with community palliative care supports—as long as possible, he determined it was time to enter one of our city's inpatient palliative care units. Less than a day later, he was gone. Some readers of Palliative & Supportive Care may actually be familiar with Barney, through his various published works. As a professor of law at the University of Manitoba, he was known for his expertise in health issues and the law and biomedical ethics. He was a frequent speaker to medical professionals on medico-legal subjects, and had a cross-appointment with the Faculty of Medicine at the University of Manitoba. Besides his many publications, the book he coauthored, Canadian Medical Law: An Introduction for Physicians, Nurses and Other Health Care Professionals, third edition, is considered an authoritative work on legal issues relating to patient care and treatment and addresses the most frequent and pressing concerns facing health care professionals and the lawyers who advise them.

My good friend and colleague Barney Sneiderman died yesterday. A few months ago he was diagnosed with pancreatic cancer; the day before yesterday, after failed trials of chemotherapy and staying at home—with community palliative care supports—as long as possible, he determined it was time to enter one of our city's inpatient palliative care units. Less than a day later, he was gone. Some readers of Palliative & Supportive Care may actually be familiar with Barney, through his various published works. As a professor of law at the University of Manitoba, he was known for his expertise in health issues and the law and biomedical ethics. He was a frequent speaker to medical professionals on medico-legal subjects, and had a cross-appointment with the Faculty of Medicine at the University of Manitoba. Besides his many publications, the book he coauthored, Canadian Medical Law: An Introduction for Physicians, Nurses and Other Health Care Professionals, third edition, is considered an authoritative work on legal issues relating to patient care and treatment and addresses the most frequent and pressing concerns facing health care professionals and the lawyers who advise them.

I cannot say that I have ever known anyone quite like Barney. He was an interesting combination of kindness, intellectual intensity, and nervous energy. In fact, to coin a phrase that aptly applies, Barney had what I would call “intellectual akathesia”1

Akathesia: motor restlessness characterized by muscular quivering and the inability to sit still; intense anxiety at the thought of sitting down; inability to sit down.

; the inability to ever set ones mind entirely at rest. An illustrative case example might offer some clarity. About 15 years ago, Barney and his wife Carla were in Hawaii, together with their then very young children. My own family happened to be vacationing in Hawaii at the time. One afternoon, along with other friends, we all had the good fortune of spending some very memorable time together. It was one of those glorious idyllic days, when the intense Hawaiian sun, the turquoise blue water, and the fragrantly scented air made you feel that in all creation, nothing could compare. Barney and I were walking along the water's edge, having fallen somewhat behind the rest of the group. Finding ourselves alone, Barney immediately began talking about one of his favorite topics, physician-assisted suicide. While I did my best to politely disengage from this soliloquy, he went on citing case law, legal precedents, and the like. Finally, no longer being able to tolerate this one-sided conversation, I said, “Barney, we're in paradise. I DON'T WANT to be talking about physician-assisted suicide!!” We strolled onward, while I briefly considered whether I had been somewhat harsh in achieving this glorious silence. Not more than a few seconds later Barney turned to me and said—completely straight-faced and unphased—“Well, I'm really interested in the Holocaust.”

Barney spent a great deal of his professional life thinking, speaking, and writing about death. In fact, during our final conversation, which took place midafternoon the day before he died, he told me how pleased he was that his final publication placed our names side by side (companion pieces on “Dying with Dignity: A Doctor's and Lawyer's Perspective”; Chochinov & Sneiderman, 2005). In the article, Barney articulated a position he has long held; that is, for those precious few people who would want the option of physician-hastened death, legal means ought to be available. He imagined, however, that this would be a palliative measure of last resort. In the article, he also suggests that no matter how superb the palliative care, there would always be patients who would want to end their lives and his “suspicion” that he would be one of them.

Given this was our final chance to speak, I asked Barney if there was anything he saw or had come to know that he might share with me, from the edge so to speak. He told me that the big surprise of this experience was the fatigue; “like nothing you could ever imagine” were his exact words; “fatigue is the ‘f’ word in cancer.” He told me that he wasn't afraid of death, only the process of getting there, because in the absence of life, there is no experience. He then invoked the words of the Greek philosopher Epicurus: “Where I am, death is not, and where death is, I am not.” He went on to say that he was still trying to figure out what death with dignity meant. Without provocation, he suggested that it “may reside with others” (I do not recall ever having given him a copy of my article, “Dignity and the Eye of the Beholder”; Chochinov, 2004). Barney felt his family and friends had showered him with love and attention while he was moving into his final months of life; “the people who come, the food they prepare; they will do anything; and the people in palliative care have been unbelievable; everyone wants to be sure that I don't die alone.” Being what he described as an “existentialist,” Barney felt that death was an experience he would ultimately face on his own. Although he anticipated his family being by his side, the idea of entering into death alone somehow seemed right and fitting.

He went on to tell me that he still felt there ought to be a legal means by which terminally ill patients could obtain physician-hastened death. He imagined, however, that with good palliative care, this would be exceedingly rare. He described the process being akin to an ancient Hebrew court, where the burden of evidence required was extraordinarily high (“it would practically require a public assassination in front of a dozen witnesses”) and the sentence incredibly harsh—death. “And what about you, Barney, is that what you want for yourself”? “No,” he replied. “I don't think that would be good for my kids; and so long as I have reassurance that I can be kept comfortable, I'll be OK.”

Barney was born on Washington's Birthday, and had a long-time passion for American and European social, political, and military history. In fact, his final publication will not be the one with our names side by side, but rather, one where his name will stand alone. In his final months of life, he completed a book, Warriors Seven: Seven American Commanders, Seven Wars and the Irony of Battle. Like the military leaders he wrote about, in the face of overwhelming odds, he redoubled his efforts to achieve his goal: seeing his book published. Ever the historian, with the official book launch last week, he told me, “June 6th would be a good day to die.” June 6th, the most celebrated D-Day of the war, the Allied invasion of Normandy that quickly led to the liberation of northern France. As fate would have it, he died May 28th. He told me he was ready to go, and I know was looking toward death as a liberation from his hard-fought battle with cancer.

As our conversation drew to a close, I think we both sensed it was time to say goodbye, our final goodbye. “Barney, could I ask you a favor; would you let me write an editorial about you, and share some of our conversations with my palliative care colleagues?” “I would be honored,” he replied. “Harvey, it's been a beautiful thing knowing you.” “It's been a privilege knowing you, Barney.” In his final words to me, Barney said, “This is a strange thing for an atheist to say, but God bless.” At the age of 68, with his wife and three children at his bedside, knowingly embraced in the warmth and affection of multitudes of friends, family, colleagues, and former students, comfortable and at peace, just as he wished, Barney Sneiderman died alone.