Everybody Wants to Go to Heaven but Nobody Wants to Die: Bioethics and the Transformation of Health Care in America

by Amy Gutmann, Jonathan D. Moreno

An eye-opening look at the inevitable moral choices that come along with tremendous medical progress, Everybody Wants to Go to Heaven but Nobody Wants to Die is a primer for all Americans to talk more honestly about health care. Beginning in the 1950s when doctors still paid house calls but regularly withheld the truth from their patients, Amy Gutmann and Jonathan D. Moreno explore an unprecedented revolution in health care and explain the problem with America’s wanting everything that medical science has to offer without debating its merits and its limits. The result: Americans today pay far more for health care while having among the lowest life expectancies and highest infant mortality of any affluent nation.


Gutmann and Moreno—“incisive, influential, and pragmatic thinkers” (Arthur Caplan)—demonstrate that the stakes have never been higher for prolonging and improving life. From health care reform and death-with-dignity to child vaccinations and gene editing, they explain how bioethics came to dominate the national spotlight, leading and responding to a revolution in doctor-patient relations, a burgeoning world of organ transplants, and new reproductive technologies that benefit millions but create a host of legal and ethical challenges.


With striking examples, the authors show how breakthroughs in cancer research, infectious disease, and drug development provide Americans with exciting new alternatives, yet often painful choices. They address head-on the most fundamental challenges in American health care: Why do we pay so much for health care while still lacking universal coverage? How can medical studies adequately protect individuals who volunteer for them? What’s fair when it comes to allocating organs for transplants in truly life-and-death situations?


A lucid and provocative blend of history and public policy, this urgent work exposes the American paradox of wanting to have it all without paying the price.

Genres: Nonfiction, Science, Medical, Medicine, Audiobook, Philosophy, Death

272 pages, Hardcover

First published August 27, 2019

About the author

Amy Gutmann is the 8th President of the University of Pennsylvania and the Christopher H. Browne Distinguished Professor of Political Science, Communications, and Philosophy. She is a political theorist who taught at Princeton University from 1976 to 2004 and served as its Provost.

Reviews

[Cookie M.]

I can't finish this book. The ethical conundrums presented in it are too much for me. I just cannot understand why we care so little for other people and so much for our own selfish wants.
I think this is an excellent book, but I am the kind of poor misguided fool who wants to fix the world, and I can't.

[Kent Winward · Rating 4 out of 5]

Medical ethics are timely in light of the ethics we are confronting with the corona virus. Even on Twitter they are talking about the medical ethics of virus triage. Interestingly now, we are also seeing some convergence of economic ethics, actuarial tables, and medical ethics. The book details the different types of ethics we see in our medicine and these styles are playing out in our nightly news as we speak: Utilitarian, Categorical Imperative, Veil of Ignorance (John Rawls), Golden Rule, etc.

[Amber Odom · Rating 1 out of 5]

Very superficial introductions to some interesting ethical issues. This book was quite boring, except in a very few instances. The book could have used a bit more editing, as it just was awkward and hard to read at points. And, overall, I felt like the title was very misleading. I was expecting the book to discuss things like code status and what we should/shouldn't do to extend life, etc. But the topics/issues discussed did not deal with that at all, which would be fine and forgivable if the authors actually did a good job with the material they did choose to write about.

[Paul · Rating 3 out of 5]

For seasoned bioethicists, not a lot new here. However, for those interested in the origins and development of the field, this is an excellent introduction. Lacks the "insider" perspective of Jonsen's The Birth of Bioethics, but extends the narrative of that book. Perhaps most importantly, is informed by Gutmann's longstanding articulation of the principles and aims of "deliberative democracy."

[Chunyang Ding · Rating 5 out of 5]

This has been the best nonfiction book I have read in the last year. Gutmann and Moreno provide a sweeping view of bioethics, taking the reader on a trip through the history of how this new field developed, as well as diving into many case studies, current policy decisions, and the current state of the American health care system. One might be worried that with such an ambitious goal, the individual chapters would be too light or be made up of filler, but each chapter of Gutmann and Moreno's writing style feels like a perfect lecture: a good amount of nitty-gritty science, fascinating cases, and above all, a sense that this content is truly important.

The one refrain I found most oft repeated in this book is on trust. Trust in science, in government, and in each other, all make up the foundations of what we can establish as a standard in bioethics. Gutmann and Moreno do not shy away from the many mistakes that scientists have gone through, from Nuremberg to Tuskegee, HeLa cells all the way to the He Jiankui's recent modification of baby genes. The authors emphasize that bioethics is only able to succeed when there is a significant buy in from all members of the community, including both professionals, regulators, policy makers, and the public. This is not an easy thing to build up, especially in an increasingly polarized political landscape, but it might become necessary as we undergo ever more rapid changes in healthcare technologies.

Several sections of the book almost feel like traditional ethics - the discussion on organ transplants, for instance, while others seem more economically rooted - the price of healthcare. Still other chapters are a beautiful mix of fields, like the ethics of allowing the government to nudge individuals to make better healthcare decisions. To answer that, the authors discuss the economics of such nudges in terms of healthcare costs, the neuroscience of how our brains react to such nudges, consciously and unconsciously, the ethics of allowing majority rule for these kinds of actions, the business politics of advertisement, which already undergo this kind of psychology, and the way that society has responded to these efforts, in pop culture and in landmark legal cases. All of that, in a single chapter, yet none of it feels extraneous or superfluous!

Besides quite a wordy title, this was a fantastic book. Highly recommend it for anyone interested in medicine in particular, but really required reading for anyone who wants to be more in control of their own health.

[J. Joseph · Rating 4 out of 5]

Everybody Wants to Go to Heaven but Nobody Wants to Die traces the history and current topics in healthcare that have led to major values-based debates. This book aims to inform the public of a still relatively new field in healthcare called bioethics. Both authors have academic and political careers - as of their authorship of this book the most relevant entries being Gutmann chairing Obama's bioethics commission from 2009-2017 and Moreno serving as a senior advisor on the same commission. Many don’t know what a bioethicist is, what they do, or how they operate. Gutmann and Moreno use major debates in healthcare to exemplify and define this field for the everyday person so folks can understand healthcare in a more holistic way. They cover topics from end of life, unfair access, human experimentation, reproductive technology, and many more, as they aim to demonstrate how this field operates in the unique context of the United States.

This is a super niche topic, but one that I know well since it is also the field I work in. Bioethics highlights that healthcare is filled with values judgments, which seems obvious but it’s actually been a long and arduous journey to get folks to recognize this both in and out of the hospital. I found that this book provides a good and quick introduction to many of the topics that bioethicists have worked on since the field began working directly in the hospitals in the 70s/80s. The reviews of this book aren’t great here on Goodreads, but I think that's because it's mostly academics claiming this book is too general/popular audience. Which is an odd thing to say because the book is explicitly intended for a public audience and does a very good job at tailoring these complicated topics for such a crowd.

Personally, I also found the book interesting to read because as a Canadian it shows how different our systems are from the United States. For example, Gutmann and Moreno state it is "easier" to pull the plug on a patient than it is to not offer life support or extraordinary treatment in the first place. However, where I am it's the opposite. Here it is harder - morally and legally - to withdraw treatment that has already been started than it is to withhold treatment options in the first place. This is just one example, but there are so many throughout the book that it left me having to think about why we do things how we do them up here in the True North.

[Dan Downing · Rating 4 out of 5]

While not the last work in bioethics, Gutman and Moreno serve up what could be a brilliant first course or a fine refresher tome. Most of the ground they cover has been marched on by armies but they bring together many disciplines and their own qualifications. Among what they explore: DNA, IVF, CAR-T, DBS, ACA and a dozen more alphabet topics as well as abortion, law making, cloning, socialized medicine and so on. Their assessments are incisive and balanced while not shying away from firm statements: "The rhetoric of socialized medicine continues to resonate strongly with politicians and citizens who adamantly oppose the mandating of health insurance or health care entitlements for all. Their identification of socialized medicine with the overreaching state, however, is hard to reconcile with the failure of many of the same people to defend core human freedoms from interference by the state, such as gay rights, women's wights, civil and religious freedoms for minorities, and separation of church and state." (pg. 135)
This is one of those sad books which is full of vital information, history, and trenchant arguments while being largely free of jargon: but it will not find a large audience. Indeed, among those who would benefit the most, probably none will venture here.
Recommended

[Rach · Rating 4 out of 5]

This book definitely isn’t geared towards those deeply engrained in the field, but if you’re interested in bioethics and learning more about the American health care system, I think it’s a fantastic place to start!

Covering a wide range of topics from vaccines to physician assisted deaths to IVF to organ transplants to the controversial experimental research of the past, this book highlights the many faults and moral issues within our health care system. It’s made me desire a universal health care that much more than I’d already wanted! And also introduced me to some things I’d like to spend more time researching myself, which is always a fun thing to glean from non-fiction.

Sometimes books like this can feel lengthy and daunting, but the way each topic is narrowed down to effective chunks makes it manageable and also, if one desired, easy to look for a specific topic. It reads almost like a textbook but not quite, definitely fits the bounds of most standard non-fiction which I do like reading! It’s really clear that both Gutmann and Moreno are deeply knowledgable about bioethics, which was already obvious as they laid out their personal ties in the introduction.

I did really enjoy this! Seeing both sides of arguments pointed out is always so fascinating and I’m finding that I like learning when I’m not forced to. Perhaps I should pick up non-fiction more often!

[Lori · Rating 3 out of 5]

A nice overview of the short history of bioethics and the issues today in the USA. This would be good for a college course or seminar or for an interested layperson.

The focus is on public health issues, things the government need to act on or has legislated about (both abortion rights and allowing and funding accessible abortion clinics). The authors do not decide which side is 'right' in most cases. They discuss almost every case that has made the headlines for the past 50 years. They dissect the cases to find out the basic reason people disagreed (which is usually not the reason stated, because people don't realize why they believe things) and then look for a solution that both sides could back. Their position is that it takes a bipartisan buy-in for any major health care step forward. They also discuss the moral implications of 'nudging' and advertising that acts on the emotions rather than logic.

The one issue they take a position on is affordable health care for all. They strongly believe in this and present evidence that this is the right decision (other countries).

The book could have been edited better, at times it went way off topic and rambled.

I didn't know much about this field before hand. I suspect this is basic information that the professionals already know.

**This was a Goodreads giveaway.**

[Kali · Rating 3 out of 5]

Good intro to bioethics and the uneven distribution of healthcare and resources. There is even a pandemic afterword that is pretty informative and interesting since we are still living with those consequences.

I’m giving it three stars because it’s a solid introductory course to bioethics. If you’ve already taken some courses in bioethics, or do work where these discussions happen regularly, you may already be familiar with the ideas here. Then it’s mostly review with some of the more well-known cases discussed. Good refresher.

The “death with dignity” discussion and the pandemic afterword were the most informative for me.

[Maddy · Rating 3 out of 5]

While much of the book's content was interesting, it suffered from a severe lack of focus. Within the span of a few pages, the authors would touch upon the high cost of American healthcare, a string of seemingly unrelated personal anecdotes, the necessity of bipartisanship, and an elementary introduction to theoretical bioethics principles. While many of the stories were food for thought (and engendered fascinating conversations among my friends) I would've liked if the book could have more seriously engaged some of the topics it covered.

[Kent Delay · Rating 3 out of 5]

While a great topic a bit of a disappointing read. While the book is well researched it fails to develop a cohesive set of principles to guide bio ethics. I am politically left of center but find that the book espouses a vague direction that most university relativists would approve of but fails to back them. If what you are advocating for are your personal preferences with no cohesive framework that’s fine but just say that. The writing rambled in many places. I was hoping for a lot more.

[Michael · Rating 5 out of 5]

This was a great overview of major issues and history of bioethics. Would make a great course to delve into the specific issues (funding, abortion, patients right to know, stem cells, crispr among others). It did a really good job situating the discussions historically and politically, as well as exploring them from both Liberal and Libertarian outlooks, as well as being honest about where the authors stand. Overall great

[Lisa Wright · Rating 5 out of 5]

This is an eye-opening look at the complexities of bioethics. I was most interested in end-of-life issues, but found that that was only a small part of bioethics. Includes discussion of stem-cell research, organ donor distribution, frozen embryos and much more. Beautifully written.

[Corliss O'Bryan · Rating 4 out of 5]

Some heavy concepts addressed here.

[Mary · Rating 3 out of 5]

Interesting and unique read

[Melanie · Rating 3 out of 5]

The biggest problem with this book is that it was published just before the pandemic and so many healthcare issues changed after 2020.

[Sarah James · Rating 3 out of 5]

It was fine and informative but definitely not something I would read for fun.

[Emily · Rating 3 out of 5]

Interesting cases reviewed but it was clearly leaning one way politically. I would have preferred a more non partisan review of cases.

[Jeffrey Thomas · Rating 4 out of 5]

An intriguing title that hooks us in to an engaging but rather dry introduction to bioethics. The authors bring in just enough of their personal involvement -- and their bona fides -- to validate this discussion. And they are remarkably good at discussing the many fraught topics in an even-handed way, while still making clear their personal opinions. I got this book because of recent deaths of parents, in home, and our various reactions; so the most striking quote in the book is from Simone de Beauvoir, about an upper-class death. Similar to the current reference to "first-world problems", it reminds us of how relatively easy most death is for us nowadays, with so much less of the pain of yesteryear. The authors also chart the remarkable advances in bioethics, even in our lifetime, recounting some horrific experiments done both in the US and in other countries, on people deemed less worthy of attention and respect. The authors could have made an even stronger case for the benefits of strict standards of ethics and testing. This book is useful for anyone concerned about medical ethics and recent changes in laws. It would be especially helpful for discussion groups about such difficult issues as abortion, birth control, assistance in dying, and universal health care.

[Valerie · Rating 4 out of 5]

Excellent information about health care in the US. I will come back to this as a reference.