The Conversation: A Revolutionary Plan for End-of-Life Care by Angelo E. Volandes, M.D.

A physician’s fervent quest for better information about medical options for patients nearing their end, and the steps necessary to make those choices clear.

conversation
In The Conversation: A Revolutionary Plan for End-of-Life Care, Angelo Volandes, a medical doctor for decades, focuses on the extensive, intensive, intrusive medical interventions that patients routinely receive at the end of life, many of which extend life by a matter of hours or days or not at all, while decreasing its quality substantially. He earnestly argues that every patient should be offered the option to choose among three broad categories of care: life-prolonging, limited medical and comfort care–in other words, the choice between quantity and quality of life. The Conversation advocates for all patients and families to receive information about what end of life care looks like within these three categories, and firmly states the importance of patients, families and medical professionals having what he calls the Conversation about end-of-life wishes openly and often.

To make these points, Volandes describes his upbringing as the child of Greek immigrants and the impact it has had on his life: from his start as a student of Socrates and a Greek diner cook, his stint as a philosophy major and then his work as a medical practitioner, he has been interested in what good life (and good death) are. Appropriately, Volandes neither attempts nor claims to be impersonal or unemotional about this charged topic; rather, he brings his personal and professional experiences as well as research to his impassioned argument.

The majority of the book is devoted to stories of patients, families and circumstances–and Volandes’s own attempts, good and bad, at approaching the Conversation. With names changed, these are real-life anecdotes of choices made with more or less preparation and knowledge of what a decision will entail, or what an incapacitated patient would have wanted. The last quarter of the book is composed of several appendices and a lengthy, narrative notes section, all of which provides substantive hands-on advice aimed variously at the patient, or the patient’s spouse or children. The Conversation is a how-to manual, enlivened by engaging–if occasionally painful–true stories. Volandes makes his points succinctly and convincingly and offers readers the tools to make change within their own lives.


This review originally ran in the January 6, 2015 issue of Shelf Awareness for the Book Trade. To subscribe, click here, and you’ll receive two issues per week of book reviews and other bookish fun!


Rating: 7 people.

book beginnings on Friday: The Conversation: A Revolutionary Plan for End-of-Life Care by Angelo E. Volandes, M.D.

Thanks to Rose City Reader for hosting this meme. To participate, share the first line or two of the book you are currently reading and, if you feel so moved, let us know what your first impressions were based on that first line.

conversationThe Conversation focuses on a subject near and dear to me, after a little time spent in a hospital setting myself – although never in the position held by this author, a medical doctor.

It was a blustery March morning at the crack of dawn, and my medical team was refueling with ample cups of coffee in the hospital cafeteria before reviewing our list of patients. Just as I took a scalding sip, the overhead speaker blared.

“Cold Blue, Greenberg Five! Code Blue, Greenberg Five!”

I like that these opening lines really grab our attention. Shocking, perhaps? But also a realistic way to get into his head, I’d wager.

This quotation comes from an uncorrected advance proof and is subject to change.

Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital by Sheri Fink (audio)

five daysWell. This one is a lot to tell you about.

Sheri Fink is an award-winning journalist and holds both a PhD and an MD. In Five Days at Memorial, she examines fateful, famous and controversial events at Memorial Hospital in New Orleans in the five days following 2005’s Hurricane Katrina. Forty-five bodies were recovered from the hospital, with about 9 of them (depending on your source) suspected of having been euthanized by hospital staff during evacuations. I had been looking forward to reading this book but was leery going in, because this subject was clearly going to be emotionally fraught, depressing, poignant. I was quickly mesmerized, though: these events, while troubling and difficult to take in, fascinated me deeply. I have been increasingly interested (outside my reading of this book, for some time now) in the subjects of end-of-life, advanced directives, and our culture’s approach to death. And I am always intrigued by ambiguity, situations in which it is clear to see black-and-white or right-and-wrong. If ever there were such a situation, this is it.

Roughly the first half of the book is dedicated to relating the events of these five days, as revealed by Fink’s investigations. (Recall, as I mentioned in my book beginning, that she describes her copious research. I am fairly well convinced of its virtue.) We get to know a number of characters in the story: doctors, nurses, managers and administrators, patients and their family members. We know the ending, in a sense: the hurricane will be far worse than anyone imagined; the hospital will not be evacuated in one, two, three or four days; there will be crimes investigated. But the way the events unfold were unfamiliar to me in their details. Although this is a journalistic account, Fink also imbues it with suspense, which feels very natural: imagine the terror felt by those inside the hospital throughout. Not knowing the whereabouts or well-being of friends and family, isolated by rising floodwaters, without electricity, and plagued by rumor (on which more in a minute), a number of those inside Memorial feared for their lives. And some lost their lives.

The second half of the book describes the investigation of one doctor and (centrally) two nurses. Dr. Anna Pou was eventually called before a grand jury, which (some two years after Katrina) declined to indict her for multiple counts of second degree murder. In this section, we meet new characters, most notably two investigators who work as a comfortable team together. Fink also explores the history of euthanasia as a concept in different cultures and different legal understandings today, and the approach of bioethics, as well as post-Katrina attempts to establish emergency standards for triage, including the allocation of limited resources that will save some lives while ending others.

I was impressed by Fink’s style. I felt, in the end, that she let the facts (as she discovered them) stand alone. Many times throughout it felt like Fink’s voice spoke on one side of this painfully difficult controversy, but pages later she lent that voice to the other side, so that the effect was… shall I say, appropriately discomfiting. The fact is, I strongly feel, that none of us can perfectly know what happened in those five days, what anyone’s real motivation or intention was, and probably that none of us has the right entirely to judge actions taken in such profoundly weird circumstances.

Many questions remain, and I can easily understand and sympathize with divergent views: family members whose loved ones were (allegedly, possibly) euthanized are angry that they weren’t evacuated; hospital workers with no options left to them felt it was better to euthanize than to abandon patients to die slowly, painfully, and alone. I see it both ways. But the details, I think, are lost to me – someone who lived none of it, who’s just read the book. Dr. Pou, it appears, does not find this book’s treatment fair at all. While it’s true that Fink doesn’t exonerate her, I felt that she wasn’t condemned, either. It’s just… so complicated.

One of the more disturbing elements, to me, was the power of rumor and euphemism in the hospital and the accusations bandied about afterward. Doctors and nurses allegedly spoke of “making patients more comfortable,” or said “we won’t leave any living patients behind.” I don’t see how these vague phrases can be used to accuse someone of murder (or euthanasia, or what you like) – what if they literally just meant make someone comfortable? What if they meant that we will evacuate all living patients, thereby leaving none behind? I don’t think these statements necessarily point to killing people – certainly not beyond a reasonable doubt. And then the rumors: New Orleans after the storm saw violent crime and looting, but not (writes Fink) to the extent that it was rumored, within the hospital and more generally. Some of this fear and rumor was racially charged. Such a circumstance serves no one well.

In fact, the most damning evidence in Fink’s book for me was not the evidence that euthanasia had taken place – frankly, my value system allows for euthanasia as a fine option in certain circumstances – but the evidence that other hospitals faced similar challenges (loss of power, rising waters) and functioned better. I can’t recall the name at this moment (and the audiobook format is bad for looking up such things), but there was a hospital under analogous conditions that ran regular shifts – encouraging staff to sleep when not caring for patients – and sternly disallowed the spreading of rumors. (I think the phrase was something like “if you didn’t see it, don’t say it.”) Memorial saw a decidedly higher level of panic, and that was one of its critical failures. This can’t possibly be Dr. Pou’s fault: she’s just one person, incapable alone of preventing or inciting panic. In fact, as Fink presents it, if she did commit certain acts, she wasn’t alone; she was just singled out in investigations.

I can draw no conclusions after reading (listening to) this book, other than to say I think it was well told – visceral – and I am emphatic about the persistent ambiguity of this situation. In other words, I can’t judge, and I think it’s a little outrageous that anyone would try to. But I guess the justice system feels it has to try…

Narrator Kirsten Potter was well up to this task; full credit for the narration. I enjoyed this format for this book, but the major drawback for journalistic work is that I can’t flip back and check names, dates, etc.

Recommended, if you’re up for some tough topics and hearing about suffering.


Rating: 8 sleepless nights.

book beginnings on Friday: Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital by Sheri Fink

Thanks to Rose City Reader for hosting this meme. To participate, share the first line or two of the book you are currently reading and, if you feel so moved, let us know what your first impressions were based on that first line.

five days

I have been intrigued by the idea of this book for some time now. I have some perspective on Katrina, to begin with. Not that my personal life was profoundly effected, but Houston residents saw the consequences come our way. For one thing, in the form of Katrina evacuees, and for another, because when Hurricane Rita was forecast for us just a few months later, the response was quite different than it might have been if our neighbors to the east had not just been so badly beaten. And then I suppose my interest is piqued as well because I work at a hospital now. Finally, I got to see Anna Deavere Smith perform last month (at the Medical Library Association Annual Conference in Chicago), and she did a short piece on the conditions at Charity Hospital in New Orleans that was – naturally – very moving. So here we are, finally.

Five Days at Memorial begins with an Author’s Note in which Fink describes her research methods (lots of interviews & other primary & secondary materials) and notes that she wasn’t at Memorial during the storm, although she visited later. She makes it clear that this is a journalistic work, and that she has been faithful to what she learned in her research – all dialog in quotations comes from interview, etc. – and that she has made an effort to keep her own reactions (“any book reflects the interwoven interpretations and insights of its author”) clearly delineated from the facts. I appreciate this.

I’d like to share two bits for your book beginning today. First of all, “Part I: Deadly Choices” begins with a quotation:

Blindness was spreading, not like a sudden tide flooding everything and carrying all before it, but like an insidious infiltration of a thousand and one turbulent rivulets which, having slowly drenched the earth, suddenly submerge it completely. РJos̩ Saramago, Blindness

And then the Prologue:

At last through the broken windows, the pulse of helicopter rotors and airboat propellers set the summer morning air throbbing with the promise of rescue. Floodwaters unleashed by Hurricane Katrina had marooned hundreds of people at the hospital, where they had now spent four days.

And that, I think, says enough for today.

The Empathy Exams by Leslie Jamison

An essay collection that earnestly examines feelings–the author’s and the world’s.

empathy

Leslie Jamison follows her debut novel, The Gin Closet, with an essay collection that has earned her the Graywolf Press Nonfiction Prize. The Empathy Exams opens with Jamison’s experience as a medical actor. In this role, she is given a character, complete with props and not only symptoms, but behaviors: body language, failure to make eye contact, dishonesty. In portraying deception, or a pretended lack of self-knowledge, Jamison contemplates what it is to feel, how we communicate what we feel and what we do with these communications.

While all her essays are linked by the topic of empathy, their subjects range widely. One essay about incarceration deals with a man serving time for mortgage fraud who continues to declare his innocence; another covers the case of the West Memphis Three and the documentaries about them that so moved Jamison as a young woman. “Morphology of the Hit” studies Vladimir Propp’s Morphology of the Folktale, which Jamison calls “a map for storytelling,” and she uses that map to construct a narrative of the random act of violence she experienced in Nicaragua.

Within the context of pain, both injury and chronic illness receive repeated treatment. The Barkley Marathon, a grueling, almost unfinishable race through Frozen Head State Park in Tennessee, is presented both as a subcultural phenomenon and a subtext for pain. Jamison attends a conference for Morgellons patients–who believe they are infested with fibers and foreign matter crawling out of their skin–and the few doctors who will take them seriously; she finds herself responding with such empathy that she is in danger of catching the disease herself. She also leads readers on two “Pain Tours,” closing with the specter of female pain, and female guilt over pain–making the studied choice to apologize for neither.

Throughout these varied topics, Jamison makes references to many thinkers and influences, from Lucy Grealy (Autobiography of a Face), Susan Sontag and Frida Kahlo to her own friends. Her essays often dwell in the theoretical and the academic; she is interested in philosophies, and admits to difficulty experiencing, recognizing and sharing her own emotions–a difficulty that occasionally manifests in pedagogy. However, readers will finish with no doubt she is sincere in her quest to own, identify and comprehend empathy.


This review originally ran in the April 3, 2014 issue of Shelf Awareness for the Book Trade. To subscribe, click here.


Rating: 4 itchy patches.

Not a great rating, right? Reminder: when I write reviews for the Shelf I work to (mostly objectively) state what is of high quality about a book, and who might like it and why; if applicable, I mention who might want to steer clear. When I rate the books here, I am stating my personal reaction. I think Jamison did good research & does some good writing; but the academic & theoretical nature of these essays didn’t appeal to me. I was hoping for a more emotional reaction to the world; and specifically I was interested in the medical acting concept, which received relatively little play time. I wonder if *I* have an essay to write about empathy, based on my experiences working in a cancer hospital. I don’t know that I’m ready to write it right now; but if/when I do, it will be more emotional and less cerebral than these essays here. Not better or worse; but this is how my personal reaction – the personal appeal this book had for me – rates The Empathy Exams.

County: Life, Death and Politics at Chicago’s Public Hospital by David A. Ansell

I read ~150 of County‘s ~200 pages in one night, and forced myself off to bed. Finished the next day. Ansell is no professional writer; I itched to get out my red pen here and there. But his story is powerful and evocative, and his passion for the injustices he describes absolutely screams off the page.

I found myself swept away in the story of “County,” as Ansell refers to the Cook County Hospital in Chicago where he spent the bulk of his career. As a med student, he and his friends suspected they wanted to go to County, famous for its overcrowding, underfunding, racial disparity, and incredible challenge. His group was concerned about social injustice. Fresh off antiwar protests and sensitive to racism, these idealistic young med students drove down from New York to Chicago to visit the hospital and interview with Quentin Young, then Chairman of the Department of Internal Medicine, famous pioneer of desegregation and human rights in health care. They were shocked at the squalor and disorganization, even having come in with some impressions. Ansell & friends, eventually known as the “Syracuse Group,” conspired to become residents at County, precisely because of the challenges it presented.

Ansell is strongest when telling his personal story. Residents at County in his day (he started in 1978) had little to no supervision or assistance from their attending physicians; he describes an environment in which the residents all muddle through together, cooperatively, learning as they went. This was a great education but often resulted in less-than-optimal care for the poverty-stricken patients. From resident, he goes on to a position as an attending physician at County, although his original plan had been to head back east after completing his residency. He was immediately hooked, though, by the neediness of County, the organization, and his patients. He was also involved in politics and activism from his first moment on campus – literally. He attended a meeting on the day of his scheduled interview for residency.

Over the years, Dr. Ansell would serve in various positions in the ER and in the outpatient clinic, and be part of the birth of the Breast Cancer Screening Program and County’s AIDS Clinic. His patients, and their problems, made deep impressions on him. He was active in trying to right the wrongs of the health care system and of County’s management and underfunding in particular. When the politics really get going, Ansell can get a little bit soap-boxy. I have mixed feelings about this aspect of the book. While unquestionably passionate, righteous, and well-informed, he can tend to come on a little strong. Preachy, even. My concern here is the one my old buddy Gerber expressed about Barbara Ehrenreich’s Nickled and Dimed: On Not Getting By in America, years ago: the author’s personal political starting point is so overtly obvious that the (actually very strong) point of the book may be dismissed because of the author’s prejudice. Speaking as someone who DOES share Ansell’s politics, and who still feels that he can get a little preachy, I have concerns about the book achieving its goal of education and perhaps even changing minds.

But the stories about Ansell’s experience learning and working as a professional doctor, the stories about his patients and their troubles, and the stories about the challenges of County… its politics, the underfunding, the horrific and inhumane conditions… these are where Ansell shines. It’s a powerful, emotional, evocative book. It makes good points: it argues that access to health care is a human right, and should not be dependent upon health insurance or employment status. It is definitely a political book. I recommend it, just with a few reservations. Because it is short and engrossing, you can almost read this book in one sitting or two. And I think it is absolutely worth your time.

Teaser Tuesdays: County: Life, Death and Politics at Chicago’s Public Hospital by David A. Ansell

Teaser Tuesdays is a weekly bookish meme, hosted by MizB of Should Be Reading. Anyone can play along! Just open your current read to a random page and share a few sentences. Be careful not to include spoilers!

From page 127,

The high-pitched beeping of my pager pierced the still of the early morning air. My heart-rate increased in a Pavlovian response that harkened back to my days as a resident when the beeping often presaged a patient in trouble.

I am not quite through and thus not writing my review yet, but I can say for now: OMG. This book is powerful and outstanding, and rivaling Fire Season for my Best of 2011 honors. This is not just the story of our nation’s health care system and all its woes, nor a story of racism, poverty, politics and injustice – although it is these things, it is first Dr. Ansell’s personal story, and I find it powerful. Stay tuned.

Crossings.

I have a few things to share with you today. They aren’t books, but you might be interested anyway.

First, last week I discovered a new-to-me concept called postcrossing. (I was alerted to this concept by write meg!. Thank you Meg.) The idea is an international exchange of postcards – yes the really actually hardcopy kind. It’s not pen-pals; you don’t get from the person you give to. But you send postcards to people around the world (and you get a short bio from them so you have something to write about, if you’re having trouble with that part), and then you get them, too! I really like the idea. It means you get snail mail that is pretty, personal, and not bills or catalogs. So, I signed up immediately upon reading Meg’s post and clicking the link; I’m in! And then I sent my first 5 postcards, to Germany, Austria, Ukraine, Taiwan, and Russia. BUT. I didn’t use enough postage, and I didn’t put my return address, either. So guess what? At lunchtime today I’m going to go buy some international postcard stamps and start again :-/ Ah well. I’m still in! And I’m going to get postcards!

So how funny and coincidental that right after discovering postcrossings, I came across a similar project. (Now that I am trying to retrace my steps, I have NO IDEA how I got there. Sorry.) BookCrossing works a lot like postcrossing does: you register and get a unique identifier code for your postcard or book. This allows the postcard or book to be tracked – so if it’s a postcard, you get credit for having sent it, and you get more postcards coming to you. If it’s a book, you can see where its travels take it – if its recipients are logging it on the website, that is. This is much less likely with BookCrossing, it seems to me, because you can just leave books around, wherever, or hand them to random people, who may or may not care to get online and log their receipt of them. I would guess they wouldn’t, very often. Whereas, in postcrossing, the recipient of your card actively requested it, and is actively participating in the same system, whereby one only receives a card if one gets credit for sending cards; therefore I would guess everyone is fairly interested in logging them into the system. (Also, postcrossing recipients, by definition, have internet access and are comfortable with the system. This is not something we can assume when handing out books or leaving them on park benches.)

I think BookCrossing sounds like great fun, but I won’t be joining that one. Why? Several reasons. I think there are a number of similar programs online (PaperBack Swap, for instance), where people can trade and send books around. Another reason that comes to mind was discussed today over at Tales From the Reading Room: people who are not actively seeking out free things (as the postcrossing participants are) don’t necessarily place a high value on them. I think litlove (the above blogger) is right on target when she points out that “free often means without value,” or at least is perceived that way.

But mostly, I guess, I won’t be BookCrossing because it’s sort of what I do for a living, which is a beautiful reason not to play, really. In the hospital where I work, I run a small library that distributes reading materials. We have a nice collection of hardback books that we purchase new, catalog, and circulate just like your local public library; and just like a PL, we want them back and will ask you to pay for them if lost. But we also have a large collection of paperback books, donated by the boxful every day, that freely roam the hospital and beyond. These books are very much playing the BookCrossing game (minus the tracking), and they make a huge difference to our patients, caregivers, visitors, and staff and faculty. It means that there’s always an abundance of free and various reading materials randomly distributed in our little world, and that’s a beautiful thing.

identifying with the prison librarian

Well, you tell me, does this make me a little nuts, or just mean that Steinberg is a skilled author? It’s occurring to me that our situations are parallel: we both work in “special libraries” (that’s a real term), meaning we’re not in schools, universities, or public libraries. Prisons and hospitals are fairly unique environments. I’m not sure my employer would appreciate the comparison, but both are large institutions, and I have heard my patrons say they feel a little bit like they’re being processed in a machine. I’ve been thanked for using their names instead of 8-digit numerical identifiers. That’s kind of sad. I just had this strange feeling as I walked back from lunch, having reluctantly closed Running the Books, that perhaps it’s weird that I’ve become accustomed to seeing signs on escalators that say “If You Are Feeling Dizzy or Unstable, Please Use the Elevator” and in bathroom stalls that say “If you have had an accident or soiled your clothing and need help, please call XXX.XXX.XXXX.” People here are not necessarily happy to be here. Also, I share with Avi the prison librarian the embargo against connecting with our patrons. There are different reasons – his are a serious security risk, are considered to have lost the privilege of making friends, threaten his job. Mine have a federally protected right to privacy and are going through utterly life-changing events. But they’re all people and we all too easily see ourselves and our loved ones in these strangers. Of course, Avi sees the same people for long periods of time (very much the norm in prison I think) and my people come and go unpredictably (and when they go, I never know why). But I’m getting into this book and identifying with Avi’s workplace conundrums.

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