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Death with Dignity Book
“Orfali approaches this agonizing subject with common sense informed by extensive research and an acute sensitivity to the dilemmas faced by dying patients and their families and doctors. The result is a thought-provoking contribution to the debate over this explosive issue. A lucid, powerful argument for letting dying patients go gentle into that good night.”
—Kirkus Star Review (April 15, 2011)
In his new book Death with Dignity: The Case for Legalizing Physician-Assisted Dying and Euthanasia, Orfali provides an in-depth exploration of the shortcomings of our end-of-life system. The reader will learn about terminal torture in hospital ICUs and about the alternatives: hospice and palliative care. With laser-sharp focus, Orfali scrutinizes the good, the bad, and the ugly. He provides an insightful critique of the practice of palliative sedation. The book makes a strong case that assisted dying complements hospice. Oregon, by providing both, now has the best palliative-care system in America. This book can serve as a gentle and informed guide to “a good death” in the age of hospice and high-tech medical intervention.
Orfali makes a compelling case for legalized physician-assisted dying. Using the latest data from Oregon and the Netherlands, he puts a fresh new slant on perennial debate topics such as “slippery slopes,” “the integrity of medicine,” and “sanctity of life.” His engaging writing style brings clarity to these issues. The content is thought-provoking; the arguments are well-researched, air-tight, and original.
As Dr. Ira Byock so eloquently reminds us, “We are, each one of us, at every moment, a heartbeat away from death.” Most of us prefer to avoid thinking about our death. If we happen to think about it, we tend to imagine a quick, painless death—a sudden heart attack, accident, or a Hollywood-style instant death: Poof! Gone! Unfortunately, the diseases that once killed us swiftly (pneumonia, influenza, cholera, infections, and massive heart attacks) have been replaced by the Big Six—heart disease, cancer, stroke, lung disease, diabetes, and Alzheimer’s. Typically, these diseases are chronic, long-term, and degenerative. Dying in the age of chronic disease is an extremely complicated process that involves a lot of anguish, pain, and suffering. The lucky few will go suddenly. But the remaining 80% will not leave life the way they would have liked to: “at home and without needless suffering.”
Most of us will die in small steps. We’ll find ourselves navigating through a labyrinth of confusing end-of-life choices. We will spend our last days (often years) in sterilized torture chambers—hospitals, nursing homes, and even hospices. The terminally ill needlessly endure torture at the end of their lives. Did I say torture? Yes, let’s call it by its name. In this case, both the torturers and the tortured are us. Our archaic laws prevent our doctors from assisting us with our death when we voluntarily request it. In most states, we haven’t repealed these laws yet. Consequently, there is no one to blame but ourselves. We have put legal shackles on the people who can help us die with dignity.
We have the technology that enables us to avoid this needless suffering. We have the control switch that can end it all, on request. It’s called euthanasia, which in Greek means “an easy and gentle death.” It’s the technology we use to lovingly end a pet’s painful life. We make the choice of euthanasia (or painless death) for them. However, no one can, nor should, make that choice for us. It must be voluntary euthanasia—we would have to voluntarily request the prescription when we are terminally ill. As an added precaution, we would self-administer it. This type of euthanasia is called assisted dying. If we legalize it, as we have in Oregon and Washington, doctors will simply add it to their arsenal of end-of-life care. Compared to the current options, this would be, by far, the most humane, dignified, and painless final exit. As a society, we would have legalized death with dignity. It would become another end-of-life choice—another way to go. Having that choice does not necessarily mean that we would exercise it. Think of it as insurance—it buys us peace of mind. It’s there if we need it. We can always choose to die the old way; most of us will.
What’s Taking So Long?
So why isn’t euthanasia legal? Suicide, of course, is not against the law in the United States and most advanced countries. Assisted suicide, however, is not legal. To do assisted dying right, it would have to be integrated into the practice of medicine. We need the help of doctors, nurses, and hospices to make it all work seamlessly. According to the U.S. Supreme Court, the decision to legalize euthanasia must be done at the state level. Every state must have this discussion and then put it to a vote. Some states—for example, Oregon—have had this discussion and lifted the prohibition. In the 2006 landmark case Gonzalez v. Oregon, the U.S. Supreme Court reaffirmed its position, by a 6-3 decision, in support of Oregon.
For most states, however, the goal remains elusive—very close, but no cigar. According to polls, the U.S. public is strongly in favor of euthanasia. For example, in a 2003 poll in Hawaii, where I live, the public was 71% in favor with 20% opposed. Yet, the Death with Dignity bill continues to fail year after year. The last time, our legislators failed to pass it by a two-vote margin.
So why does the majority not prevail? The answer is that the 20% opposed are strongly-motivated, well-financed, and highly-organized. On the other hand, the 71% who are pro-euthanasia are almost leaderless. Most of us prefer to avoid the topic of death: who wants to get up on a sunny Hawaiian day and go lobby the legislators for a better death? We have other things to do with our lives. There are exceptions. I was able to identify three groups who at various times have put some energy into the assisted-dying cause:
o Physicians, but not all. When it comes to assisted dying, the medical establishment is a house divided. In 2006, the American Medical Women’s Association (AMWA) adopted a policy in support of Aid in Dying. In 2008, the American Medical Students’ Association adopted a policy reiterating and broadening its support of Aid in Dying. However, the AMA hierarchy remains firmly against it, even though there is strong support among its members. Physicians are taught to fight disease till the very end. Consequently, they don’t do death well. But, times are changing. The new field of palliative medicine is about end-of-life care and pain management. It has helped reduce some of the terminal torture, especially when coupled with hospice care. In addition, there is a vast underground of doctors who quietly (and illegally) help their patients die. It’s all very secretive. Sometimes, they go public. The most famous example is Dr. Jack Kevorkian, whose flamboyant mercy killings ignited a national debate on euthanasia.
o People who are terminally ill. Some may get involved because they know death is coming. Typically, they are fighting their own disease and have little energy to give to the general cause of euthanasia. Instead, they attend self-deliverance conferences hoping to obtain information about do-it-yourself dying. What pills? How many? How do I take them? They also need names of compassionate doctors who will write prescriptions to help them die.
o Family members who navigated a loved one through death. These are typically people who witnessed the agony and suffering of the last days and feel that more could have been done for the dying. They now better understand the system and know its shortcomings. Their lives in the aftermath have taken a new direction, and they are determined to help others (and themselves) find a better way of dying. Some form or join advocacy groups for assisted dying. For example, Derek Humphry founded the National Hemlock Society after helping his fatally-ill wife, Jean, die. In his words, “She asked me to help her end her life.” In 1991, he self-published Final Exit, which sold over half a million copies and remained on the New York Times bestseller list for 18 weeks. It’s an instruction manual for do-it-yourself euthanasia. In 2005, Hemlock merged with another organization to become Compassion & Choices, which is now the largest U.S. advocacy group for patients’ rights at the end of life.
As you can see, this is a mixed bag of organizations and accidental activists. Many of the activists are not in it for the long run. They simply want to inform the public and then get on with their lives. Their opponents, however, are in it for the long run.
So, Why Did I Write This Book?
I belong to the third group. I decided to do something after I helped navigate my soulmate, Jeri, through the maze that led to her natural death from ovarian cancer. I described the experience and process in my book "Grieving a Soulmate." To net it out, I was traumatized by Jeri’s death process and it had a big impact on my grieving. The scenes from the last days kept haunting me. Consequently, I spent a long time trying to understand what had happened. Could we have done better? Did Jeri needlessly suffer? Did I let her down? Ironically, Jeri had the perfect hospice death—she died relatively quickly from a blood clot. But I was still haunted by the 16 hours of “torture” she endured at the end of her life.
Jeri was a strong proponent of active euthanasia, but that’s not how she died: it wasn’t a legal option in the state of Hawaii. During my grieving, I constantly ruminated over her hospice death and tried to compare it with the assisted-dying alternative. I came to the conclusion that those 16 hours of needless torture could have been avoided had euthanasia been a choice for her. I also concluded that hospice gave Jeri the best possible death under the circumstances. And for that, I will always be grateful.
Like all terminal patients, Jeri ought to have been allowed to decide how she wanted to die. She was not given the opportunity to make that choice. Consequently, I wrote this book to help make it a choice for others. It’s my tribute to Jeri. As I said, Jeri had a very soft landing. Many won’t be that lucky. Their torture may extend over weeks and months. I pity them and their survivors. We must give everyone the choice to avoid this final torture if they so desire.
This book may be short, but it’s packed with information. I only use Jeri’s personal narrative to illustrate some of the key decision points. This book is not about Jeri. It’s about euthanasia and why it must be legalized. Specifically, I advocate the legalization of physician-assisted dying modeled after Oregon’s Death with Dignity Act. My contribution to the effort is to help inform the public by making the book freely available in all e-book forms—including Kindle, iPad, iPhone, Nook, Android, and Sony. So just tell your friends to download it into their readers. You can’t beat “free.” Send them an e-mail with the links. Hopefully, this will make the book go viral and disseminate the information widely. Most of the proceeds from the print version will go towards advertising the book; all profits will go to charity.
Who Is This Book For?
We will all die; so this book is for everyone. We all have a vested interest in understanding our choices at the end. This book teaches you how to navigate the maze we call “end of life.” You’ll become a more informed consumer. Most importantly, it tells you how you can effect some of these choices. With a very small amount of effort, you can considerably reduce the angst, suffering and anxiety that most of us will experience at the end. A vote, a few e-mails and phone calls, can bring about change and help reduce your own suffering and that of your loved ones. Read this book, get informed, and then inform others.
Finally, I want to reiterate that supporting the right to choose does not imply that you will pick euthanasia at the end. It’s like being pro-choice on abortion without needing one. For most people, euthanasia is never a first choice. If all goes well, a natural death always seems preferable. But having that choice provides insurance for the dying. It gives them a sense of being in control of their death, which can greatly reduce their terminal anxiety. It also provides an exit option when all else fails.
How This Book Is Organized
I tried to keep the chapters focused and packed with information. Each chapter covers an issue in depth and some may be quite long. Here’s the plan:
o Chapter 1 sets the tone. It gives you a feel for the despair, confusion, and emotional chaos that surround death. I introduce the strongest of these dilemmas: mercy killings. Then I contrast this chaotic environment with the civilized death which our pets are offered. I introduce the terminology and technology of modern-day euthanasia. I go over the different flavors of euthanasia—including active, passive, slow, voluntary, involuntary, and physician-assisted dying. I decipher the confusing terminology and discuss some of the moral and legal issues. Finally, I present the results of opinion polls to give you a feel for how society at large views euthanasia.
o Chapter 2 explains the logic, as well as the lure, of euthanasia. First, I go over what it means to have that choice. Then, I explain why Jeri wanted that option. Next, I recount the dilemma she faced in a state where assisted dying is not a legal option. Again, the discussion is not about Jeri. However, she was a professional problem solver during her life and she subscribed to the principle, “My life, my death, my choice.” So, it’s enlightening to follow her decision process when she faced her terminal prognosis. She contemplated that decision with a lot of clarity and documented some of it. I use Jeri as a case study to help you understand the anguish which the terminally ill face. Their terminal anxiety is shared by their caregivers and loved ones. I will tell you how Jeri’s decision could have affected me in a very dramatic way. Yes, caregivers can turn into mercy killers out of deep love. It’s a very emotional time filled with sadness, fear, and angst. I try to deconstruct the decisions that take place during that emotional pressure cooker and present them as objectively as possible.
o Chapter 3 is about how we die today without the assisted dying option. I explain how to navigate the end-of-life maze in hospital ICUs and hospices. I cover the advances in palliative care, hospice, and pain management. I tell you how to avoid the worst type of end-of-life torture—death in the ICU. Then, I provide the best-case scenario for hospice and palliative care, using Jeri’s death as an example. Finally, I tell you what’s missing and why the system “as is” has reached its limits. I suggest a quick fix. However, the real solution is to add physician-assisted dying to the palliative-care repertoire. I go over the advantages and synergy that this added choice provides.
o Chapter 4 is about where we are today and how we got here. I trace the major milestones of the modern end-of-life choice movement—the court decisions, senate bills, parliamentary laws, and country and state battles. In the U.S., physician-assisted dying for the terminally ill is now legal in the states of Oregon, Washington, and Montana. In Europe, various forms of euthanasia are legal in Switzerland, the Netherlands, Belgium, and Luxembourg. The passive and slow versions of euthanasia are now legal and widely accepted in most advanced countries. They’ve become part of the standard medical practice.
o Chapter 5 is about euthanasia as it is practiced in the real world. I cover the lessons learned from three decades of experience in the Netherlands. Then, I analyze 12 years of data from the state of Oregon’s experiment with physician-assisted dying. The Oregonians have created a fine-tuned system that maximizes the dying patient’s autonomy, while providing maximum safeguards with minimal bureaucracy. In many ways, Oregon may have discovered the perfect system of palliative care; it’s Yankee ingenuity at its best.
o Chapters 6 and 7 are about euthanasia’s detractors and their concerns. This is not a traditional “left versus right” issue. Today, the main groups that are aligned against the passing of euthanasia bills are: the Catholic church, the pro-life movement, and Not Dead Yet (an advocacy group for the disabled). In 2010, they were joined by the populist They’re Trying to Kill Granny movement. The issue is also a cause for concern for some civil libertarians, physicians, and hospice workers. The arguments against euthanasia fall into three broad categories: 1) the sanctity of life must be preserved, 2) the slippery slopes must be prevented, and 3) the medical system can alleviate end-of-life pain. I’ll address each of these concerns in great detail. I’ll provide points and counterpoints and let you be the final judge.
o Chapter 8 is a call to action to make physician-assisted dying legal. I start the chapter with a review of the “euthanasia underground” and its implications for society. Baby boomers are very Internet-savvy. Consequently, when their time comes, they’ll know where to find the necessary pills, exit bags, and helium tanks. Necessity is the mother of invention; it’s just a matter of time before a budding entrepreneur starts marketing a single-pill solution—an exit pill that is both legal and widely available. So, we will have a free market solution to fulfill this missing option. The implications are self-evident. One way or another, the assisted-dying option will become widely available. Will it be underground? Or, will it be legally available as a palliative-care option with safeguards? We must decide. I end the chapter with an interview with the politician who is spearheading the legalization movement in Hawaii—house majority leader Blake Oshiro. We go over the bill that he is proposing and the safeguards it contains. I also quiz him on what it will take to pass this bill. Maybe, Hawaii will become the fourth state to legalize physician-assisted dying for the terminally ill.
The bottom line is that there is no real lobby for the terminally ill. Instead, there’s a grass-roots movement that is both altruistic and selfish. It’s altruistic because we want to help our loved ones die better. It’s selfish because we are also helping ourselves die better. Let’s face it—we’re all going to die someday. In the words of the late Elizabeth Edwards, “The days of our lives, for all of us, are numbered.” It follows that we all have a vested interest in understanding and effecting the workings of an end-of-life system that controls how we die. This book is my modest contribution towards a better understanding of that system.
Personal note: What qualifies me to write this book? In my previous life, I specialized in complex, distributed software systems. I learned how to deconstruct complexity and come up with better solutions. Jeri and I teamed up with Dan Harkey to coauthor books that helped a new generation of programmers understand the esoteric technology of collaborative software on large computer networks. Our books were written in an easy style to help guide these programmers and demystify the complexity of these systems. The books became bestsellers; we sold over a million copies. In this book, I use these same analytical skills to unravel and demystify the most complex system I’ve ever encountered: our end-of-life system. I will describe how we die in America today. You’ll get the good, the bad, and the ugly. I hope to make a modest contribution by explaining how to eradicate some of the “ugly” and cut down on the suffering.
I also wrote a book on grieving that deals with the same issue from a survivor’s perspective. With these two contributions behind me, I now hope to get out of the death business until my time comes. There’s just so much of this stuff one can take. On the other hand, this was my window to write these two books; I was writing while under the influence of the deep emotions that accompanied the death of my soulmate. I was able to look at the system from a different perspective, another angle. Hopefully, it well help guide you or your loved ones through the end-of-life maze.