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

by Angelo E. Volandes

There is an unspoken dark side of American medicine--keeping patients alive at any price. Two thirds of Americans die in healthcare institutions tethered to machines and tubes at bankrupting costs, even though research shows that most prefer to die at home in comfort, surrounded by loved ones. Dr. Angelo E. Volandes believes that a life well lived deserves a good ending. Through the stories of seven patients and seven very different end-of-life experiences, he demonstrates that what people with a serious illness, who are approaching the end of their lives, need most is not new technologies but one simple The Conversation. He argues for a radical re-envisioning of the patient-doctor relationship and offers ways for patients and their families to talk about this difficult issue to ensure that patients will be at the center and in charge of their medical care. It might be the most important conversation you ever have.

Genres: Nonfiction, Medical, Medicine, Death, Health, Self Help, Science

240 pages, Hardcover

First published January 13, 2015

Reviews

[Jimmy · Rating 5 out of 5]

I received this book as part of the Goodreads first reads program.

We all talk about living a good life, but what does it mean to have a good death? It's time we discussed this concept more than we do with those we love and with our political and religious leaders.

"Strive in regards to disease two things, to do good or not to do harm."--Hippocrates. A great quote, but does it sometimes promote more harm than good? Is not helping someone in pain to die doing them any good?

Fifty years ago people died at home surrounded by family. Today, most deaths occur in health care institutions with the patient surrounded by strangers. The result has been disastrous. When the Affordable Care Act was being discussed, death was taken off the table by such voices as Sarah Palin who spoke of "pulling the plug on grandma." And there are still those who speak of "death panels." So we sweep the topic under the rug.

Researchers at Dana Farber Cancer Institute in Boston have found that end-of-life discussions do not cause emotional distress or psychiatric illness. In fact, the opposite was true. Those patients who did not have those discussions had a lesser quality of life. The same went for the relatives of the patients.

Dr. Volandes remembers his first patient, by the name of Taras, who dealt with end-of-life issues. Taras had a tube or catheter in almost every part of his body in order to keep his body alive for just 48 more hours. He had a total of 8 lines, including in his rectum, bladder, lungs, veins, heart, and stomach. To what end? For what purpose? At what expense? At what suffering? Who is responsible for this system? What political party? What religion? What organization? How have they achieved such power over our deaths?

"Americans experience some of the worst deaths in the developed world. . . . The primary reason we experience such horrible deaths is doctors' failure to openly discuss medical care with seriously ill patients."

With Taras, no doctor takes the time to ask about his wishes concerning end-of-life care. It's just not usually something that they do. A change is needed there. The focus in training is on technology, not on talking. However, much is beginning to change in some places. More medical schools should offer philosophy, rhetoric, communication, and other "soft" classes.

Families suffer as well as the patients with a bad death.

Take the case of Nonna. She has advnced Alzheimer's. Her family had a feeding tube inserted in her. That went along with a breathing machine. Advanced Alzheimer's is terminal. There is no cure.//Then the family fought over who would be in charge. None of them had spoken with Nonna about what she might want.//The family are "good Catholics." They want "everything" possible done. They pray and cross themselves. None of it changes anything. They refuse to allow the doctor to remove the feeding tube.//The doctor wonders what Nonna herself would have wanted if she could see herself now.//After three weeks of misery, the family finally said enough.

Choose a proxy wisely: 1. Be sure they understand your values. 2. Be sure they will separate his or her feelings from yours. 3. Be sure they will be a strong advocate for you, even in the face of relatives. 4. Be sure they live near you.

Living wills are often too vague. You also need a proxy. And talk about it with everyone you possibly can. While you can.

Children and spouses often make decisions out of guilt and denial.

TV shows often show CPR as successful. The true success rate is between 8 and 18%.

Dr. Volandes decided to show a patient the Intensive Care Unit. It helped everyone to make a better decision. Actually, comfort-oriented care seems to work better. People live longer that way when it is done early with hospice, instead of waiting.

So the Doctor decided to create videos to show patients and their families. That really is the key to his new plan. Let them see what will happen to them if they go on like this. He compares it to Khan Academy.

Senator Ted Kennedy died eating ice cream and watching his favorite James Bond movie with his family. And other patients without those resources can die the same way with hospice.

Lesson #1: Have the Conversation
1. What kind of things are most important to you? What makes you happy?
2. What fears do you have about getting sick or needing medical care?
3. If you were very sick, are there any specific medical treatments that might be too much for you?
4. Do you have any beliefs that guide you when you make medical decisions?
5. How do you value quality vs. quantity of life? How important is it to you that you live as long as possible even if it means pain and suffering?
6. Which is more important to you: length of life or quality of life?
7. Is there a special occasion coming up that you want to be around for?
8. Would you want to avoid pain at all costs even if it meant you could not interact with others?
9. How important is it to you to be at home when you die?

Lesson #2: Let Your Loved Ones Know Your Choices

Lesson #3: Talk to Your Doctor and Know Your Options

Start now for yourself and for those you love.

[Jessica Ye · Rating 4 out of 5]

Whether you wish to pursue medicine in the future or prefer to remain on the other side of the stethoscope, Angelo Volandes provides very useful information on the reality of hospice care as the end of a patients life creeps near. Similarly to Atul Gawande in Being Mortal, Dr. Volandes' the main idea that was relayed was that quality precedes quantity in terms of creating an end-of-life plan for patients who can do so while they are still conscious and competent in making their own decisions.
I would've rated this five stars if it wasn't for the briefness of his discussion (it's a pretty short book), not to mention his philosophy background that could've been tied in to discuss his evolution of thoughts on the abstractness of dying from a perspective that included more than just medical details. The repetition of his arguments was also quite off-putting, with an entire index filled with advice and tips on how to have "the conversation" with family members and patients, although it does serve its purpose in reasserting its importance.

I recommend this for anyone who is expecting to die or has a family member/friend impending death.

"The tougher issue, however, is when to recognize that the small fixes do not change the larger picture, to recognize that fixing specific problems may not fix the whole patient. This is medicines version of not seeing the forest for the trees."

[David · Rating 4 out of 5]

This book, or something similar (perhaps Being Mortal by Atul Gawande), should be on everyone's must-read list. Better yet, everybody should actually read it and have a copy handy for future reference.

The author is a physician (a hospitalist) and he takes a very balanced and evenhanded approach in trying to convince the reader that everyone needs to think and clearly communicate about the type and level of medical care they wish to receive when they're not able to express their wishes on their own. As described by the author the choices range from full code (do absolutely everything possible to keep the patient alive as long as possible) to palliative care (providing comfort and making the remaining days as pain free and enjoyable as possible) and something in between the two. Although it's pretty clear what he generally thinks is best (palliative care) he isn't judgmental and essentially sends the message that the best care is the kind that the patients choose for themselves. He even mentions that hospice care isn't for everyone and why that may be so.

The patient examples are to the point and properly illustrative. And the Appendices have lots of useful information and references to help the reader begin the conversation with their loved ones.

[Dawnetta Hodge · Rating 5 out of 5]

This book is important for anyone dealing with serious illness in themselves or a loved one. It offers an opportunity to deeply consider what we want the end of our lives to look like, especially in relation to our modern healthcare system. It has motivated me to be very clear with my doctors and family about what I want and do not want while in the event of a medical crisis.

[Ashleigh · Rating 5 out of 5]

I enjoyed this book because it brings up important facts everyone must face when becoming a healthcare provider. Not everything is always sunshine and rainbows and important conversations must be made with patients and their loved ones. The topic of death is something people tend to skate around. However, once the time comes to decide whether to prolong medical care or call it quits, then the issue becomes that the patient and family do not realize they have multiple options.

The author mentions asking someone about their views on quality versus quantity. When it comes time to treat an illness with aggressive measures, or instead turn to keeping the patient comfortable, many are blindsided. There are so many people in the world that do not realize how brutal CPR and other lifesaving measures are on the body. This tends to make people choose lifesaving measures, because they do not know just how much of a toll this takes on the body. By having honest conversations with individuals, it is possible to share new information, allowing the patient to make a more informed decision on end of life care. Do they want to keep fight even if it means pain and suffering, or would they rather choose to live the last days of their lives in a familiar setting and without pain?

As I continue my healthcare journey, this book will play in the back of my mind when it comes to informing patients. Everyone has a right to their autonomy, which cannot be presented without sharing every avenue of care. It is my responsibility to present the facts in a non-bias way to allow my patients to make an informed decision from there. Rather it be seeking the last few months surrounded by loved ones at home on medications to mask the pain, or it being to continue every avenue possible to extend their life, every person has the right to understand their options and choose.

[Alona · Rating 5 out of 5]

I'm giving this book 5 stars because it's a really important idea that's beautifully presented. No one likes to think about dying but that's often at the cost of not contemplating how best to live before one dies. I cannot recommend that you read this book enough.

Full disclosure, I work at the publisher but if you've ever read anything by Atul Gawande, you should definitely read this book too.

[Mirjam Celie · Rating 5 out of 5]

This is a great book. It reminds you how important it is to think about the quality of life and end of life care. How important to know your loved ones' wishes and thoughts on the matter. How important it is to talk about these things while you still can. And to keep talking about it...

[Trina Symons · Rating 5 out of 5]

Read this book at the start of my nursing career 7ish years ago. This book has always just stuck with me. Volandes does a beautiful job of advocating for quality-over-quantity of life and the eventual futility of medicine.

Hoping to give this book a reread this summer!

[Lael Walters · Rating 4 out of 5]

Need to have this kind of conversation with my dad... it's too bad it still seems so hard to talk about.

[Klara Galeta · Rating 5 out of 5]

Všichni povinně přečíst! ❤️

[Red · Rating 3 out of 5]

The book seems very compelling but I'm unable to find an audio book version at this point, and with young kids it's hard to read without interruption.

[Kate Pearson · Rating 4 out of 5]

It was good but it’ll NEVER be “being mortal”

[Richard Jespers · Rating 4 out of 5]

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 https://www.acpdecisions.org/products... 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!

[Nancy · Rating 5 out of 5]

"The Conversation" is worthy of five stars. Written in an easy-to-digest format suitable for all, I finished it in three 1- to 2- hour sessions.

Few of us will avoid having to make end-of-life care decisions, either for ourselves or a loved one. Dr. Volandes uses rich anecdotes from his medical experience to personalize the options available to individuals and their loved ones. This humanization of the choices we have is invaluable. We are inundated by fictional media which overwhelmingly paints a picture of aggressive interventions as having positive, complication-free outcomes. In reality, these are the exceptions.

Knowing and communicating what one's wishes are as life fades away is crucial to a "good death". For some, it may be a difficult topic to broach, but most of us, if we think about it, can begin to define what that means to us. For some, it will include all medical interventions that can prolong life - quantity is our goal. For others, comfort and quality will be the end we seek. For still others, a combination will be appropriate.

These are all valid options, but if we do not have "The Conversation", our loved ones and those who care for us medically have no way of knowing what our wishes are.

In summary, I feel that this book is an excellent resource - a keeper. It will have a permanent place on my bookshelf.

[Jane · Rating 5 out of 5]

I found this book fascinating. The idea centers around having a conversation with patients and family members regarding treatment and life sustaining interventions. According to the author many people have no idea what being critically ill or having a terminal disease looks like therefore they are unable to make informed decisions regarding their care. The author encourages education and discussion to help patients and families decide how the end of life will be. It is a conversation long overdue.

[Margie Dewind · Rating 3 out of 5]

I think this book would be more useful for people who haven't read much about end-of-life planning. I have, so the book gave me little new knowledge, except for an interesting statistic about the number of people with terminal illnesses who, after being given graphic information about CPR, expressed that they did not want CPR for themselves.

[Yaaresse · Rating 3 out of 5]

I felt it didn't really explain the options so much as talk about the doctor, his practice, and the development of his video. I prefer Atul Gawande's book, Being Mortal, which I feel has more useful, practical information on end-of-life issues.

[Jackie Coltrain · Rating 3 out of 5]

Probably more like 2.5 stars. Not bad but nowhere near as good as Being Mortal by Atul Gawande. This was more of a pamphlet that skimmed the surface whereas Gawande's book went in depth.

[Bing · Rating 4 out of 5]

If you have parents getting along in years, or you are getting along in years, you MUST read this. It's very important.

[Mike Bevel · Rating 3 out of 5]

Eh, it could have, as easily, been a longish New Yorker article.

[Konrad · Rating 4 out of 5]

Memorable passages:

When asked where and how they want to spend their last few months, nearly 80 percent of Americans respond that they want to be at home with family and friends, free from the institutional grip of hospitals and nursing homes, and in relative comfort. However, 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.

Fifty years ago, most people died at home surrounded by their loved ones; today, most deaths occur in health care institutions where patients are surrounded by strangers.

When we reach for the latest and greatest in medical interventions without understanding whether the benefits are marginal or simply prolong the suffering at the end of life, the result is that many of us die today with tubes emanating from every orifice and cracked ribs and punctured lungs from the rigors of CPR, surrounded by people we’ve never met but who will likely be the last ones we see in this world.

Disease may invade the bodies of patients, but the experience of illness devastates all those around them. Suffering demands that others bear witness, and family members are assigned front-row seats.

The researchers found no evidence of emotional distress or psychiatric illness in patients who had end-of-life discussions with their physicians. Patients who did not have a similar exchange with their physicians were more likely to have a lesser quality of life than patients who did.

There is growing evidence that patients who choose a more comfort-oriented approach earlier in the course of their illness actually live longer.

"Tom, I don’t want to talk to you about dying. I want to talk to you about living. I want to know how you want to live. What gives you happiness and joy?"

The patients in the intervention group made decisions about their medical care after receiving the same idealized conversation script and after they viewed the video. This group’s choices were quite different and told a powerful story. After viewing the video, none of the patients chose Life-Prolonging Care, just a handful opted for Limited Medical Care, and the overwhelming majority (92 percent) decided on Comfort Care.

We’re older now and we’ve had a good life—better than most. But if we reach a point where we can’t enjoy the things that give us happiness, then don’t draw things out by putting us on those machines. You’ll understand when you get to this point.

But as my medical school professor always told me, “Half of the things we teach you today will change by the time you practice medicine. We just don’t know which half.

[Angie Hilbert · Rating 2 out of 5]

Disappointing and unhelpful. I read this book looking for help navigating end-of-life conversations with my father who is facing a terminal diagnoses. Not ONLY the advanced directives conversation but all the talks about feeling good about the life he lived and how to use these last precious months well and give him what he needs to feel like he lived and died well. Instead, I found this book full of lurid personal accounts used as cautionary tales about why having conversations with loved ones about end of life care are so important. Bu it was very thin and grossly inadequate on how to have those conversations, how to advocate for a loved one’s expressed choices, and navigating the actual clinical reality in which “The Conversation” has to be (not) acted upon and you really don’t need a whole book on just that one, narrow piece of end-of-life considerations. Indeed, that’s the EASIESt part.
The whole book was about how important it is to have the conversation (and using horror stories to show how how awful end of life can be without it!) then offering nothing but the most obvious, googlable, resources that barely gloss the surface of how to have the conversation with loved ones and NOTHING about the conversations you must have later. The ones educating and advocating for your loved ones wishes with other family members, doctors, and other medical professionals. Getting doctors to be honest, clear, direct, and compassionate about a terminal prognosis, for example, is a barrier to the conversation that is not addressed at all.
Wasted my time at st time when every moment is precious.

[Patrick Henry · Rating 4 out of 5]

Dr Volandes writes of what he has learned through medical school and hospital care. The focus on pursuing the cure even when there is none. His point is for a physician to step back and realize there comes a time to say "enough".

This is hard for a physician whose mandate is relentlessly focused on a cure. And it can amount to giving up for a patient who is actively moving towards death. But the time comes for a heart to heart talk. Warm conversation is not a high priority in medical training.

Continuing active treatment can be torture. But, some will protest, it will give me more time. More time for what?

When there is nothing more than can be done (medically), then it's time for the "conversation". The patient has spent decades fashioning how he or she wants to live. Now ... how to die. The conversation asks practical questions with profound effect. Questions about where one wishes to die, what gives meaning to life, will those left behind be okay, what do they see as waiting on the other side.

I found it helpful when Dr. Volandes provided practical openings for the "conversation", stories and even phrases that prompt a patient and family to reflect. We ought not be surprised by death, it comes for all of us. We will never be entirely ready, but best to have planned on how to live before one dies.

A good read. Thoughtful stories from which a reader can seem like looking in a human drama.

[Christine Kenney · Rating 3 out of 5]

Just as parents dread having "the conversation" with their preteens, adult children dread broaching the topic of end of life care with their elderly parents. This is a fast read that can help start those conversation about what you and your loved ones might for end of life care.

That said, you could visit theconversationbook.org and watch a 5 min video to get the main takeaways. I hope he can continue his project of providing disease-specific videos with supplemental stats on benefit to invasiveness to help further inform the decision.

The most interesting section for me was the discussion of the efficacy of CPR. I've been trained in CPR several times and was astonished that very few instructors in their hours of instruction get around to letting their students know that even with quality CPR on an otherwise healthy patients, the odds of resuscitating are nowhere near what you might expect based on TV shows.

[Sandra · Rating 5 out of 5]

I read this because I have been asked to head up the education portion of end of life ministries for my church. It is an excellent guide on what it means to have The Conversation about what you want for your self or your loved ones if they are facing end of life due to terminal illness. The main point is that you should start the conversation before you need to and be willing to bring it up, even if medical professionals have not yet brought it up. The sooner you start having The Conversation, the more time you have to make decisions. Dr. Volandes gives several examples of what went well and what could have gone better and shares resources to get The Conversation started.

[Kendall · Rating 5 out of 5]

Everyone should read this book. I found this not only helpful in my professional career as a medical social worker in the Hospice field but as valuable learning experience for my own personal goals at EOL. The book being written by a doctor, I was fearful the writing would be filled with medical jargon and be difficult to understand but the author writes in an easy to read narrative and explains the difficult decisions that need to be made at EOL and the fact the physicians need to be having conversations with patients BEFORE they get into EOL situations.

[Kelly · Rating 4 out of 5]

There’s an assumption that the medical system (ie PCP) will initiate a conversation about end of life care options. It was fascinating to hear that the reality of death can be avoided by doctors, leaving patients and families making decisions fueled by limited information and grief.

The Conversation, through stories and practical tools, inspires you to reflect on end of life values and options.

[Corinne Natasha · Rating 4 out of 5]

A great starting point for the thanatology conoisseur. Gives scripts for starting The Conversation with partners, parents, and children while you're healthy and have the option. If you're not in the USA you can skip past all the legal stuff: it won't be accurate where you are. Just read the stories and events.

[Linett Adell · Rating 4 out of 5]

Going through a difficult time in my life right now and this book helped put the options for end of life care into focus. Good resources in the back of the book. Very conversational in nature. Which is want you want for a topic so scary and serious. A must read BEFORE you or your loved one needs to discuss what they want the end of their life to be like.

[Benton · Rating 5 out of 5]

Not a recommended bedtime story for children, but vital for us all to consider regarding end of life treatments. This book is to the point with some strong personal examples, no fluff or BS.

Read this and talk with family about your wishes. Get the wishes in writing or on video. It's simple, but astonishly difficult to get people to do.