About the Book:
In Death with Dignity, Robert 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.
This extraordinary book provides an in-depth look at how we die in America today. It examines the shortcomings of our end-of-life system. You’ll 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. By providing both, Oregon now has the best palliative-care system in America. Reading this book, above all, may help you or someone you care about navigate this strange landscape we call “end of life.” It can be your gentle and informed guide to “a good death” in the age of hospice and high-tech medical intervention.
About the Author:
Robert Orfali, the guru of client/server systems in the early days of Silicon Valley, co-authored three best-selling books that demystified the complexity of these mission-critical systems and made them understandable to a whole new generation of programmers. The books sold over a million copies. In this book, Death With Dignity: The Case for Legalizing Physician-Assisted Dying and Euthanasia, Robert uses his analytical skills to deconstruct the most complex system he has yet encountered: our modern end-of-life system. He wrote this book after helping his soulmate and coauthor, Jeri, navigate her death from ovarian cancer in 2009. The deep emotions Robert felt allowed him to look at how we die from a different perspective, another angle. Robert also wrote Grieving a Soulmate.
Q: Most people don’t want to die and don’t plan for it. Most people won’t even have entertained the idea of a DNR (do not resuscitate) order in case their heart stops beating. It is a natural instinct for people to want to fight harder to live, and physicians have taken the oath to save lives. When medical care offers all these life-prolonging treatments, at what point would someone introduce a conversation with their doctor that they want to die?
RO: You are so right. Most of us prefer to avoid the topic of death. We live in a death-denying culture. However, denial can have some serious ramifications. Closing our eyes and letting the system follow its course could easily land us intubated in an ICU at the end of our lives. To prevent this outcome, we need to protect ourselves and understand our choices. And, we need to think about it while we still can. Typically, it means having several conversations about death and dying. This is especially important for the chronically ill. It could make the difference between having a relatively “good death” and a very “bad death.” The sad fact is that dying in the age of chronic disease is an extremely complicated process that involves a lot of anguish, pain, and suffering akin to torture. 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.”
Ironically, some politicians called these conversations death panels, and they campaigned against having them funded by Medicare. It seems that they do not want us to have any control over how we die. It seems that even discussing the topic is taboo. Most doctors would also prefer not to discuss the topic. Why? It’s very emotional and complicated. To do it justice would require hours of discussions with the patient. Doctors are trained to heal, not to discuss death. They are taught to fight the disease with everything in their arsenal; there is no surrender. So they would rather initiate another treatment than deal with the existential issues of dying. Continuing the treatments also protects doctors against malpractice lawsuits.
Even though insurance does not pay for these consultations, we must have these discussions to understand what our options are. In my book, I tell you about three death-related conversations you must initiate over a period of time: How do I protect myself? When do I stop fighting? Where will I die? In states where physician-assisted dying is legal, you can have one more conversation: How will I die?
The first conversation is straightforward and practical: it’s about writing an advance directive and choosing your health-care proxy. The next two are blurrier; in the book I use my wife Jeri’s conversations to demonstrate the issues. The bottom line is that we have two health-care systems in America today: modern medicine and hospice. (Palliative care is mostly associated with hospice, but it also has pockets within the medical system.) In the age of slow dying and chronic illnesses, we need both systems. The ICU works well for us, most of the time. It does what it was designed to do: it is a superb illness-fighting machine. Hospice is also a superb system; it provides outstanding end-of-life care for the dying (except for terminal sedation and hence the need for assisted dying, as allowed in Oregon). So, we are lucky to have two systems that work: each one superb in the function it was designed to perform. In the book I make the case that assisted dying complements hospice. By providing both, Oregon has the best palliative care system in America.
So what’s the problem? The problem is that we live in a death-denying culture that makes it very hard to transition from one system to the next when the right time arrives. We, and our doctors, have a very hard time accepting death. Consequently, most of us won’t make the transition in time. We will end up dying in the ICU—a modern torture chamber for the dying. As Dr. George Lundberg describes it: “A sophisticated hospital is the last place you want to be when terminally ill. Once you’re in the hospital setting, you’re trapped. The staff owns you, and they will do those terrible things they have been trained to do to prolong life, no matter how artificially or hopelessly.”
Ironically, moving to hospice sooner may prolong our lives. In a recent study, the mean survival was 29 days longer for hospice patients than similar patients who did not choose hospice. In another study, patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile, and in less pain as the end neared, but they also lived nearly three months longer.
The ICU was never designed to help us die; it was designed to fight disease to the end. We want our illness-fighting machine to continue doing what it does best. Instead of changing the ICU, we must change our death-denying attitude. We need to better understand the end-of-life hospice option so that we can die in peace. In other words, we must have the second and third conversations that help us make the transition to hospice care at the right time (i.e., before we end up in the ICU end-of-life torture chamber).
Sadly, the fourth conversation—how will I die?— was not an option for Jeri. Physician-assisted dying was not legal in Hawaii at the time she died. In the book, I cover this missing but very important conversation. Let me explain what makes it so important. In Oregon and the Netherlands requesting assisted dying initiates a final and explicit conversation about how the patient would like to die. It allows patients, doctors, palliative care specialists, and family members to conduct an open discussion. It’s a therapeutic narrative that attempts to restore some order and coherence in the face of the forthcoming onslaught that is death. It openly deals with questions that are seldom discussed in our death-denying culture. For the first time, it provides an official venue where a terminally-ill patient can ask questions such as: How much will I suffer? How will my pain be treated? How much of myself will I lose along the way? What help do I need? What help is available? How will I die? There are many more such questions. Of course, physician-assisted dying must be legalized for such an open conversation to take place.
Sorry for my long-winded answer, but our end-of-life system is very complicated terrain. Most of us will die in small steps. We’ll find ourselves navigating through a labyrinth of confusing end-of-life choices. My book is about how to navigate the maze. It can serve as a gentle and informed guide to “a good death” in the age of hospice and high-tech medical intervention. To help get the word out, I made the e-book available for only $0.99, which is as close to free as Amazon allows. Reading about death won’t kill you. However, not understanding your choices at the end can have some very serious ramifications. In this case, it really pays to be an informed consumer.
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