Interview with author Robert Orfali

Today we're talking with Robert Orfali , author of Death With Dignity: The Case for Legalizing Physician-Assisted Dying and Euthanasia


FQ: As you mention in your new book Death with Dignity, we live in a “death-denying culture” where people don’t want to even think about dealing with death, let alone advocate for legislation. What would you like to tell people who want to put this topic off until “later”?


We’ve made a Faustian bargain with modern medicine. It allows us to live to longer, but the price we pay is prolonged dying often with suffering akin to “torture.” The sad truth is that 80% of us will not leave life the way we would have liked to: “at home and without needless suffering.” Closing our eyes and letting the system follow its course could easily lands us intubated in an ICU at the end of our lives. To protect ourselves and our loved ones, we need to understand our choices. And, we need to think about them while we still can. It could make the difference between having a relatively “good death” and a very “bad death.” It’s the difference between dying in the ICU versus dying under the care of hospice. Yes, denial can have some serious ramifications. I tell my friends to spend a few hours informing themselves about death and dying. For example, reading my book may help you or someone you care about navigate this very strange landscape we call “end of life.” You’ll be able to better understand your choices. With the e-book available for only $0.99—which is as close to free as Amazon would allow it—there’s no excuse for not reading it. Note: Reading about death won’t kill you.


FQ: You briefly talk about “living wills.” Your statistics show that less than half of this country’s population have living wills and I suspect many don’t even know what they are. Again, what would you say to people about not putting this off?


Don’t put it off. Remember the family tug-of-war over poor Terri Schiavo. You can easily protect yourself from these types of situations by providing an advance directive consisting of two documents: 1) a living will that specifies the type of life-support care you would want in various situations, and 2) a durable power of attorney that lets you appoint your health-care proxy—the person who will make health-care decisions for you in case you become incapacitated. Be sure to pick a proxy you can trust to navigate the health-care system on your behalf.


FQ: A large part of your argument for assisted dying is that you’ve seen first hand the comfort knowing how/when to die can provide the terminally ill. Do you think many in the end-of-life care area (hospice, etc.) ignore this?


I believe that assisted dying is just one more palliative option. Ninety percent of the patients who used that option in Oregon were also enrolled in hospice. For some, self-administering the pills is more comforting than terminal sedation. It gives them more control over the timing of their death. For others, the pills serve as a form of “good death insurance.” I believe that terminal patients must be allowed to decide what’s best for them: It’s “my life, my death, my choice.” I also want to point out that the current practice of terminal sedation is very capricious. The usage numbers in hospices across the U.S. vary between 1% and 52%. With such large variances, obtaining terminal sedation in a hospice becomes pure luck of the draw. Yes, we need all the insurance we can get.


FQ: You talk about the minuscule amounts that might be saved for Medicare by ending terminally ill patients’ lives early, thus arguing that the savings are too small to solve the health-care financial crisis. But do you think that some politician might twist those numbers and/or use them to scare an uninformed public into fearing death panels?


The facts speak for themselves, but as you point out politicians can twist anything. However, twisting in this case would be unfortunate because the system is already overly-complicated, and all this hysterical talk about “death panels” is not helping. As a society, we need to have a more rational conversation about death and dying. Death remains one of the last taboos of polite conversation and yet it affects us all.


FQ: Please tell our readers about FUD.


FUD is an acronym for “Fear, Uncertainty, and Doubt.” The FUD is meant to frighten people; it works against the legalization of assisted dying. Here’s what happens. The opponents of assisted dying dream up some alleged societal concern, and then connect imaginary dots that begin with legalization. They imagine steep descents down slippery slopes that result in horrific outcomes. Once they establish the possibility of a negative consequence, the burden of proof (or disproof) falls upon the shoulders of the people who want to legalize assisted dying. In the book I try to debunk the FUD by using empirical data and solid research. I try to address every one of these slippery slopes by analyzing both the risks and the logic. I can tell you that none of the anticipated slippery slopes have occurred in either Oregon or the Netherlands. The same slippery slope arguments have frequently been made against the termination of life support (“allowing to die”). In the U.S., people have been allowed to die since the “Nancy Cruzan” Supreme Court decision in 1990. In the last 20 years, millions have died through the termination of life support; there were no slippery slopes.


FQ: In your book, you stress the importance of discussing all aspects of dying and euthanasia with your doctor. But as our country moves to more managed care and many poor people don't have a true relationship with their doctor, and are instead more of a number than a person, do you think discussing euthanasia and having a meaningful conversation(s) with a doctor might become unrealistic for some?


In Oregon assisted dying offers the best protection for minorities and the poor. Why? As soon as they ask for the Nembutal (the lethal barbiturate), they become protected VIPs. Doctors, palliative care specialists, and social workers will bend over backward to find available resources and provide end-of-life care. The Oregon safeguards are designed to protect the vulnerable. Instead of languishing in decrepit state-run nursing homes and hospitals, the poor and minorities may find themselves in the hospice system. This would give them access to the best palliative care available. Of course, the Nembutal is purely voluntary; there is never an obligation to take it. However, if all else fails, the Nembutal will provide a peaceful death, which is a lot more humane than the alternative. It’s win-win for the poor and minorities.


FQ: Finally, you’ve been on a real emotional journey for the past few years, indeed, since Jeri's illness was diagnosed. Add in the time and effort to publish two books about the ordeal, Grieving a Soulmate and Death with Dignity. Tell us, how are YOU doing today?


Thank you for asking. Helping Jeri fight her cancer for almost ten years was not an ordeal. We had each other and together we could do almost anything. Looking back, these were very sweet years. My ordeal started after Jeri’s death: the grief bursts I experienced were unbearable. I discovered that dealing with the grief in its totality was too overwhelming so I separated the bursts into manageable buckets. I then worked on techniques for eradicating the grief in each bucket. I describe all this in Grieving a Soulmate. It’s divide and conquer. My grief bursts are long gone, but I’m still healing. I miss Jeri’s physical presence, but the love relationship continues after death. It’s like having a long-distance love relationship. I talk to Jeri all the time. This continuing love bond is a very important part of my healing.


To learn more about Death With Dignity: The Case for Legalizing Physician-Assisted Dying and Euthanasia please read the review at: Feathered Quill Book Reviews.

Author Interview with Robert Orfali

Today we're talking with Robert Orfali, author of Grieving a Soulmate: The Love Story Behind "Till Death Do Us Part"


FQ: Most of us are as you claim, “death virgins,” and don’t think about the actual process of death until it is almost literally knocking on our door. What are some of the preparations people should make before they find themselves in a crisis mode?


The short answer is that we need to familiarize ourselves with the workings of our byzantine “end-of-life” system. It’s a bizarre system that combines high-tech medical interventions with a medieval view of death. In the age of slow dying, this combination can be extremely toxic. About 80% of us will not leave life the way we would like to: at home and without needless suffering. The bottom line is that we have a very complex end-of-life system that requires a lot of skillful navigation. There are tons of gotchas that can result in big-time suffering. I touched on some of this in Grieving a Soulmate (see Chapter 3, “The Good Death”). This is the chapter I wish I had read before Jeri’s death.

FQ: You talk about the love you felt for Jeri as she was dying by stating “It’s impossible to imagine two people being more intimate and close.” Can you tell us about these cherished moments?


Jeri and I were always madly in love. The love grew deeper during the ten years when we fought her cancer. It peaked during the last three or four days: it was very tender. It’s a great privilege to help someone die—especially your lover. It’s like helping give birth except in reverse. Of course, the survivor has to deal with the enormous pain of grief. In a soulmate relationship, it’s much easier to be the first to die.


FQ: “Grief bursts,” or “unexpected waves of grief,” can be incapacitating and extremely painful. You described it in part as your “own private holocaust all in my mind.” How and when did you begin to realize that you could help yourself?


The “holocaust” in my mind first began on the day after she died when I woke up the next morning in a world without Jeri. During this immediate period, the grief bursts can sometimes be very intense and even suicidal. Luckily, I went numb for a while dealing with the ocean funeral and all that stuff. The grief bursts resumed after the funeral. They just kept coming and coming with short lulls in between. I used these lulls to organize my thinking—to understand what was happening to me. It took me a month to come up with a plan on how to beat back these grief bursts. I used “divide and conquer” to break down the grief. I divided my grief and assigned it to five different buckets. Then I was able to separately deal with the grief in each bucket. The trick is not to take on the grief in its totality—it’s too overwhelming.


FQ: Can you briefly describe how you would “tally up your grief bursts” and describe how you used your “grief burst buckets” and what they are?


Each one of us will have our own buckets, the triggers of grief bursts. You can use mine as templates. In my case there were five buckets: 1) the flashbacks of the last days—the trauma of watching Jeri die, 2) survivor's guilt—I was alive but Jeri wasn’t, 3) she’s gone forever—the yearning cycle, 4) self-pity—I would have to recreate my world without her, and 5) the deep existential questions: where did she go? what was her life all about?


Each of my grief bursts fell into one of these categories. I learned how to recognize them. At first I just noted them. Later I devised methods for eradicating them. Once you pop a grief burst it never comes back. I measured my progress by tracking the number of daily grief bursts.


FQ: At one point you talked about how a village supported the bereaved and its absence in today’s society, yet you have many emails to others in your book. Perhaps you did have your own “village.” How did emailing help you in your grief process?


A modern soulmate relationship replaces an entire village. Consequently, it encapsulates many of the bonds that were once distributed across a village. If you think about it, we put all our eggs in one basket. When that basket breaks we’re left alone to grieve. It’s the nature of soulmate grief: it can’t be shared. Friends were helpful but it was my grief to carry. I had to learn how to deal with it. Jeri’s girlfriends were with her when she was dying, and they experienced flashbacks of those last days. We could share that grief. We were all in shock trying to make sense of what had happened. My first e-mails were addressed to the girlfriends. They dealt with my grief bucket from “the last days.” We were trying to help each other. Later, my e-mails were sent to a larger group of friends. I tried to keep them posted on what I was doing about my entire grief. I found writing therapeutic, and it helped me organize my thinking. I wasn’t expecting responses: the sad truth is that my friends couldn’t bring Jeri back to life, however much they would have loved to. Finally, I used some of these e-mails to communicate with my grief counselor. We used them to go over my “grief work” strategy. By the way, this grief work is what I found missing from grief theory. The theorists describe grief—including its stages and phases—but don’t tell you what to do about it. They do not provide a recipe for grief work.


FQ: Everyone has lapses of one sort or another. Have you had any grief bursts since the completion of this book and if so, how did you handle them?


The red-hot pain stopped after four months of hard work. I’ve stopped experiencing these horrible grief bursts that took full control over my being. Now, I can control them and deflect them. Remember, it’s all in the mind. My “cure” worked for me. I miss Jeri's physical presence, but I can function. Our love relationship continues, in absentia. It’s like a long-distance love relationship. I talk to her all the time. This continuing love bond is a very important part of healing—again, you won’t get much of that from grief theory.


To learn more about Grieving a Soulmate: The Love Story Behind "Till Death Do Us Part", please read the review at Feathered Quill Book Reviews