The Conversation: A Revolutionary Plan for End-of-Life Care

This book is part of what really is a revolutionary approach to health care as the end of life approaches -- treat the patient, not the disease. Doctor Volandes wants patients and their doctors to think about the health care they want when an illness reaches the point where a cure is unlikely. The way he wants patients to think about it is by learning what various alternative kinds of care entail, and by talking about what they want -- openly and honestly, with their loved ones and their doctors. Do they want medical professionals to "do anything"? Do that want some support of functions that are failing, but not the most drastic? Or do they want comfort care, in which everything possible is done to eliminate pain and discomfort, but in which drastic measures are not taken. If no decision is made, Dr. Volandes points out, the medical default is to do anything to keep the patient alive; that's what medical ethics call for unless the patient orders otherwise, and that's how the system works. Allowing this to happen, or in fact deciding to "do anything" often has nothing to do with treating the illness itself, but consists of treating the conditions that arise from it -- CPR when the heart stops, a ventilator when breathing fails, a feeding tube when the patient cannot eat. These may prolong life, but the quality of life that results can be miserable. For those who are already at that point, or who have loved ones at that point, these are decisions that need to be made, or the default will apply. Some may in fact choose the "do anything" option: that's their choice. But many others will choose not to accept drastic treatment, and will focus instead on care that keeps the comfortable. These are choices that need to be considered, and communicated clearly before a crisis arises. For those of us who are not ill, but who are getting on, these are also choices that should be considered and communicated. If nothing else, it can spare our loved ones a great deal of anguish when our time comes. Dr. Volandes way of doing this is what he calls "The conversation". He provides ways of approaching this, and he also talks about ways of communicating one's wishes once choices have been made -- living wills, health care proxies, and so on and so forth. This is a compassionate "how to" guide to making -- and communicating! -- choices that older people should make.

A few weeks ago, I read an article regarding Doctor Angelo Volandes's book, The Conversation: A Revolutionary Plan for End-of Life Care and I bumped it to the top of my TBR pile. PLOT - In his non-fiction book, Volandes explains how years of working with terminally ill patients, plus personal experience with his own father, have made him realize the need for patients to create an end-of-life plan for themselves, while they are still healthy and competent to make their wishes known. Volandes noticed that this was a topic that everyone, including doctors, want to avoid, creating issues where patients do not understand their options or their wishes are ignored. As part of his efforts to communicate this issue, Volandes spent years creating a video to show patients their options for end-of-life care. In The Conversation, Volandes recounts the experiences with a variety of patients and their families, which led him to push people to open the dialogue. LIKE - The Conversation is an important book and although it's not an easy topic, everyone should discuss their end-of-life wishes with family, friends and doctors. In recent years, I've been in charge of the medical decisions for both my mom and aunt as they were dying. This was so, so tough and honestly, even though I knew their wishes on paper, we never had a real conversation about it. I had to make some decisions, without knowing what their exact wishes would have been. Having that important conversation was just too difficult to have. What I liked most about The Conversation, is that Volandes never pushes one idea. He recognizes that end-of-life decisions are different for everyone and that it can be based on a number of issues, like family, culture, religion, and even a patients own fears. One patient was a young mother dying of advanced cancer and she wanted the doctors to do everything possible to keep her alive, so that she might make it to one more Easter with her family. Other patients would rather have pain management, than aggressive treatment, picking a potentially shorter life with better quality, over the need to be kept alive at all costs. The main message of the book was a greater need to understand the options and for patients to have the power to choose the best option for them. The title of the book includes the words "revolutionary plan"...this is a bit tongue and cheek, as the revolutionary aspect of it, is simply the shift in perspective, getting people to open the dialogue. There is nothing that changes having to die or the types of options that we have at the end, it is a revolution in the way that we communicate. DISLIKE - The book was very short. The personal stories of the patients were so interesting, that Volandes could have included more. In an effort to drive home his important message, there was repetitiveness in the book, especially with the appendix section, which is filled with tips on how to have the conversation. This information was more than clear throughout the book and it was repetitious at the end. However, I can forgive the repetition, as the message is so important. RECOMMEND - Yes! Everyone needs to read this book and have those conversations. My own life was plagued with doubt and stress, after family members died and I was left feeling like I may have not followed their wishes. I wish that I could go back in time and have that discussion with them, get clarity. Even if you don't want to read this book, check out Volandes' website and watch his video. Take control of your health and care desires.

This is well written, with lots of great information and interesting stuff to think about. BUT I was surprised at how SHORT it was. When I got to the end, I was like, "Is THAT all there is?"

I gave the book to each of my (75+ years old) parents. They told me that they enjoyed the writing, found the message to be important and recommended “The Conversation” to their friends. I also led a book discussion group with older adults and caregivers of older adults, breaking the book chapters into the four sessions: Introduction & Chapter 1: The problem of end-of-life care in America; Chapters 2 & 3: Making decisions for others; Chapter 4: The Conversation; Chapters 5 & 6 & Afterword: A Solution. The book club members enjoyed the sessions and would recommend The Conversation “with confidence” to others. They felt that the book was “easy to read” and would be a “good gift — especially for someone who can’t initiate or who avoids the Conversation.” They said that the book was “very well written, engaging, motivating, important and life changing” noting that “Dr. Volandes offered perspective with humility” and that the “personal stories convey his personal growth and insight in a way that helps people understand.” Readers recognized The Conversation for helping to “clarify questions and encourage personal priorities” and for giving caregivers a better understanding of what it is like to have a serious illness. (“It helped me develop empathy for my father.” “The stories gave me a better understanding of situations.”) My takeaway is that The Conversation is a great book for book discussion groups. I foresee that I will be leading additional book discussions groups with The Conversation based on the success of this first session. These experiences recommend “The Conversation” as good and important read for patients, caregivers, and medical providers.

SOBERING FACT OF THE DAY: Life has a 100% mortality rate. Not 95%, not even 99.999%. Exactly 100%. We’re all gonna die. More imminently, all our parents are going to die. And chances are that this is not a topic you have discussed with them yet. The wise and generous Dr Angelo Volandes of Harvard has put this extraordinary book together to facilitate broaching the topic and planning for the inevitable with compassion, pragmatism and grace. Here’s a passage encapsulating the book’s mission: “Making sure that patients have discussions early and often and receive the type of health care they desire at the end of life is the only way to rectify the appalling misalignment of the type of medical care that people receive at the end of life and the type of medical care they truly desire, whether it is a full code, comfort care, or something in between. The health care system must make sure that the type of medical care patients receive at the end of life is consistent with their preferences.” Volandes includes links to his groundbreaking video illustrating the end-of-life choices between Life-Prolonging Care, Limited Medical Care, and Comfort Care, as well as a list of essential resources for end-of-life planning (eg Living Wills, Advance Directives and other forms). If you're over 40, you need to read this book for your parents -- *and* yourself, since you're not getting any younger either. Plan to discuss it at the first non-awkward opportunity that presents itself. Which will never come, so might as well do it now. The book is also a pleasure to read, illustrated with unforgettably poignant stories from Volandes' own patients (and parents!), as well as his own journey of growth as a doctor. Strong work, Dr Volandes, and thanks for your efforts on behalf of patients and their families. -- Ali Binazir, M.D., M.Phil., author of The Tao of Dating: The Smart Woman's Guide to Being Absolutely Irresistible

"The Conversation" by Dr. Angelo Volandes covers a topic that many of us don't want to talk about - how to deal with death. The focus of the book is how Dr. Volandes believes that having a conversation about your wishes long before its necessary can help in planning at the end of life. It's more than just about getting a living will, because we know that those are sometimes nebulous, but more about being specific about your wishes so others can make a decision if you are not able to do so. Ultimately, the book is about facing mortality, so others have compared it to Atul Gawande's 'Being Mortal'. But it's not the same kind of book. This book talks about one of the methods we should use when facing the end of our lives; namely, a conversation which talks about our wishes. What is most interesting about the book, though, is the story about the research that Dr. Volandes has done, and his efforts to help others deal with death through the video format. If you were to go on his website, you will see that there are many different versions of 'the Conversation' on video, across many languages. And his devotion to this topic, and practical advice contained within, is what makes this book so special. If you haven't made a choice of how you would want to be cared for if you were (or when you are) dying, then this would be a good book for you. If you are trying to learn how to talk to others about this topic, this book is even better. But if you just want to read something insightful, then this book is good for that. Bravo, Dr. Volandes!

Medical Doctor Volandes offers a plan for terminal patients to share with their family members and loved ones concerning how and when their lives should end. He informs the reader that “only 24 percent of Americans older than sixty-five die at home; 63 percent die in hospitals or nursing homes, sometimes tethered to machines, and often in pain” (3). He blames the medical profession—doctors like him— for their failure “to have discussions with patients about how to live life’s final chapter” (3). If you should become a terminally ill patient, you must have The Conversation with your doctor. I am reminded of a scene from the Mike Nichols’s 2001 HBO film Wit (based on Margaret Edson’s play), starring Emma Thompson as a highly educated woman dying from late-stage Ovarian cancer. A kind nurse played by Audra McDonald asks Thompson what her wishes are when her heart stops. Thompson indicates she prefers DNR status: Do Not Resuscitate. Thompson’s young intern, a former university student of hers, makes an error on her chart, and the Full Code treatment to revive her ensues instead. McDonald, fortunately, is on hand to remind the doctor, and Thompson is allowed to die in relative peace—as she’s wished. All too often, according to Volandes, Americans are not afforded the courtesy of having The Conversation, and patients are subject to CPR, when statistics show that only a small number of the elderly survive such efforts. At the same time, Volandes explains that medical doctors are trained in the following manner: “To doctor patients is to learn how not to die” (8). They and their staffs often can’t help themselves. With all the lifesaving equipment and procedures available to them, physicians forget the old saw, “First, do no harm,” and forge ahead because they can. Volandes states, “Patients can drive change by having greater knowledge of their options, while doctors can drive change by communicating and advocating for those choices . . . every doctor knows that in the end, we all find ourselves on the patient’s side of the stethoscope” (9). Most of the research, he tells us, indicates that terminal patients are healthier and have a better outlook at the end of their lives if they know what their choices are, and the two choices are pretty much this: you either want to be at home, made comfortable with pain control, or you want to be Full Code, where the hospital staff does everything to keep you alive until your loved ones say “Turn it off.” The doctor’s book is simply written and lacks the dry, overladen rhetoric of medical speak. Instead, he employs moving anecdotes about patients facing the end of their lives, including one about his own father. He describes the video [...] he produces to screen for patients and their loved ones to help them decide how their lives should end, instead of, defaulting to the hospital. I plan to keep The Conversation handy and study it when and if the time arrives. I could always get hit by a truck!

Volandes makes an impassioned plea for doctors, patients and their families to have "the conversation" as the patient reaches terminal status. This is the open discussion of how much therapy should be tried. Should the doctors keep trying for a cure or focus on palliative care. It is an absolutely critical discussion and everyone needs to be on the same page, and sadly they are often not. The problem is that in today's hospital, it's not clear who is the primary caregiver of the patient and who should lead the conversation., We have hospitalists who don't know the patient, different specialists treating the patient, and the patient's primary care physician is forced aside, and is too busy to make it to the hospital anyway.

Great book.

This book is an easy read and the case studies illustrated well how having a timely conversation can make the difference for all involved. Great examples for approach.

Every practicing physician needs to read it, on the lines of Atul Gawande’s book being mortal, but more instructive.