HW/PC Book Club Feb-2017: “Being Mortal”

Appreciate all the discussion comments you folks have added.

I've gotten overdosed on "mortality." Received word this morning of a 3rd close-to-home death since the new year.

First was my vacation home neighbor. He was nearly a generation older than me, but was the person I was closest to at the lake...we probably chatted every day that I spent there.

Second was the father of one of my best friends. Also a generation away, but this guy was in incredible shape--cross-country skier (competitive), long distance bicyclist, etc. My wife and I went on his last bike ride with him, his son and son's wife. We biked a couple towns over and back for a Sunday breakfast, just last September. During the ride he was talking to his son about not feeling 100% and that he had a doctor appointment to look into it the next week. That appointment led to discovery of lung cancer (never smoked) with extensive mets. Died within months.

Then third this morning learned of my son's grade school best friend, and a neighbor only about 8 or 10 doors away around the corner, committed suicide. Again, a generation away, but this time in the wrong direction. Not supposed to happen that way. He and my son were inseparable from pre- pre-school through all elementary...every birthday party, every Christmas party, Easter egg hunt, etc. He ended up at a private Jr & Sr High school and they drifted apart, but we have so many pictures of the two of them...so many.

I think there is a saying that bad things happen in 3s though, don't they?...this should be the end for me for a while. I think I'm going to take the weekend off. I don't want to talk about mortality for a while. I hope that you folks will help keep the ball rolling in this thread on the book discussion. Throw out your own questions/comments about the book. I'll be back...

To pick up on the discussion points, I'm going to quote a paragraph from the book:

"The simple view is that medicine exists to fight death and disease, and that is, of course, it's most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don't want a general who fights to the point of total annihilation. You don't want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can't, someone who understands that the damage is greatest if all you is battle to the bitter end."
Letting go, p. 187

What do we think? Do we agree with this? Do we want our doctors to acknowledge when it's time to surrender? As a follow up, in the next paragraph, he talks about how it is today, where the doctor/generals are leaving it up to us to decide when we've had enough. Is that really what we need?

Q: Did you find the book worthwhile? Are you glad you read it? Do you think my comment that some topics were "a bit difficult" was accurate? In our society, we generally consider discussions of mortality to be “depressing.” How do you feel about that generality? Has reading Being Mortal changed those feelings for you? In what ways? What might you do differently in light of your reading this book?

The book was very good. I liked learning about the birth of hospitals, nursing homes and the ongoing changes in care options.

The book also hit very close to home. about 2 years ago my great friend / cousin-in-law was diagnosed with brain caner. He did several strong treatments, and felt that gave him one more really good year. Then the treatments were not being effective and were taking a toll on him. He made the decision to enter hospice care and survived a few more months - at home, with family and friends. He took a trip with his family. And he died at home with his family by his side. This was my first ever experience with hospice care and the decisions that led to it. He became even more of a role model to me than he had been before.

Between that event and my PCa, my wife and i have been more open and candid in our discussions. We finally got our wills done, other legal documents completed, and we talk seriously about life insurance, the level and the need, long term care and other issues.

After i read the book, i wonder if the impact on me would have been different 2 years ago, before my experience with hospice care and my own cancer challenges.

HW/PC Book Club DISCUSSION — #3

Gentle readers, I needed a brief respite over the weekend after an overload of “mortality” issues. I was in a gray cloud Friday and Saturday which mostly lifted yesterday, and today I’m back to work and have put that bad news I previously reported on largely into the proper compartment…and so I return to the discussion at-hand of the book, Being Mortal. My thanks in particular to halbert and 81GyGuy for picking up the dropped ball carrying forward some new discussions, as well as to DYank and chris1960 for continuing to post responses.


I would like to discuss/comment on the General Custer/General Lee quote which halbert posted. It is my opinion that this is one of the most important & central themes of the book, and I had also planned to raise this discussion (81GyGuy, I’ll come back to some of the book’s quotes you provided, later). Dr. Gawande places the “blame” squarely on physicians being trained to “fix things” and not being trained on mortality…but I believe that there is also a responsibility on the patient’s side of things to also not push/demand action when faced with futility. Do you believe, as I do, that this is a shared responsibility?

Sadly we’ve seen General Custer scenarios…right here on the pages of HW/PC. Without pointing out too transparently, we’ve seen the words like, “…vow to fight-on as long as he’s got breath,” or when an oncologist is labeled as “uncaring” because he/she has suggested that all the straws have been grasped at and maybe it’s time to concentrate on palliative-only care and hospice. Have you also seen this at HW/PC? Seen it outside of HW/PC in your real life? Have you been the prime caregiver—the one where the buck stops—in this situation? I have. I dare say that most of you will, one day, sooner or later, be in this situation with a spouse, or God please forbid, with a child. (It’s often, I believe, and I hope that you will also accept without further discussion, a bit different when it is dealing with a parent—someone of the next generation.)

One piece of data I find particularly astounding which illustrates the prevalence of “General Custers” is that 75% of terminal patients received aggressive treatment in their last month of life. Astounding. And let me be perfectly clear that there certainly is an “overtreatment” element to this data; and yes, some of you will know that I have advocated strongly against low-risk PC overtreatment, but that’s (first of all) a different use of the same word and (secondly) is not, I believe, what is of primary issue here. Rather, it is the human side—the basic lack of compassionate care in the very final stages—which both astounds and saddens me so much more and I would like to hear your perspectives on…in the context of Dr. Gawande’s book.

Gawande hoped his book would bring about change in the big picture—more mortality training for physicians, but also more awareness on the part of patients/families…via readers like us. There has been motion on the side of physicians. ASCO, the American Society of Clinical Oncologists, has issued 2012 Guidelines to oncologists & physicians that recommend AGAINST measures in patients with advanced cancer who are unlikely to benefit from such treatments, and updated Guidelines in late-2016 on the Integration of Palliative Care into Standard Oncology Care. This doesn’t “fix” the very difficult gap in the physician’s knowledge on what they should do (or not do), and their basic ability (skill) and perhaps comfort-level to enable them to compassionately steer patients in the best direction. What else can physicians do to enable more compassionate care at end-of-life, and steer patient/family decision making?



Related to this, compiler, in an earlier post in this thread, emphasized the need for signed Advanced Directives (and other docs such as wills, which are primarily estate planning docs). compiler expressed in his first reply that “the author deals with these topics extensively.” I, on the other hand, did not think it was an extensively covered topic or even a key theme of the book. Without dwelling inordinately about varying perspective of the depth of coverage, I’m not sure I really agree with the importance he placed on these docs in the types of death situations which were discussed in this book. My comment is that these docs (the AD, in particular) may be beneficial, but they are not necessarily sufficient for many of the situations we may confront.

In my observation, the primary usefulness of an Advanced Directive is in a situation where a sudden, traumatic accident or medical incident of some sort occurs, particularly when you may never re-gain consciousness. On the other hand, in my direct experience, an Advanced Directive is not necessarily so useful is in the cases of a less-sudden death, such as the vast majority of cancer deaths. I’ll talk briefly about my own wife’s cancer death in 2011 to illustrate…

Throughout the roughly 14 months from her diagnosis until her death, the question of whether she had an Advanced Directive never came up (she did not, other than the late exception I’ll mention below), and it was not needed. What WAS important and valuable was the discussions she and I had about living and dying—which occurred during the last months of her illness—and ultimately her oncologist’s accumulated communications that the good, and then many of the not-so-good options had been eliminated.

In the end, some very tough decisions were made about her ongoing care. The tipping point was all about quality of life. It gets complex to describe complete details here, but suffice to say that we made decisions which fairly rapidly brought her life to an end—not assisted suicide, but a cessation of treatments that were maintaining critical organ functions. In the end, she was home and on hospice, at which point a DNR, Do Not Resuscitate order, which is a form of an Advanced Directive, was created so that there was no mistaking the intent.

So my point is not to de-emphasize the comments compiler made about Advanced Directives, wills, living wills, etc.—my wife and I had wills since our first child was born, and I now have a Living Will; I think they are important—but rather to discuss my observation about the book that—in fact, throughout the book, really—Dr. Gawande emphasized the importance and value of the discussions between couples, or perhaps close family members, about mortality. Preparing an Advanced Directive with one’s spouse can help to serve as a motivating framework to discuss mortality together, but I can tell you that AD document will absolutely not cover the myriad of unimaginable possible scenarios one has to confront in end-stage cancer (or other diseases). It is, in my view, the complementary discussions which help bridge the gaps. I would highly recommend that everyone prepare an Advanced Directive—if for no other reason than to have the important discussions with your loved one or close family relatives about the topics. Reading the book together, as a couple, can also enable richer discussions about these important issues.

So, compiler has already answered this next question; how about the rest of you: Would you ask your spouse read Being Mortal? Or other close/loved family member? Why or why not?

Post Edited (JackH) : 2/6/2017 4:10:09 PM (GMT-7)

Yes, compiler, I don’t recall those docs being discussed much in the book either…we’re on the same page. Creation of an AD doc can serve, it is my belief, as an catalyst to have the invaluable discussions with loved ones about end-of-life situations/wishes which go beyond what the intentionally limited document itself can eventually provide.


Building on my comments from yesterday…I thought the General Custer/General Lee quote was absolutely central to the book. It’s a great quote. Other thoughts on the Custer/Lee theme?



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When I encountered the Custer/Lee quote in the book, I knew I had seen it before but didn't recall where. Unbeknownst to be at that moment, I just realized that I had posted about it here at HW/PC and referenced Gawande roughly 8-months ago in a thread I titled ” wt*...75% of cancer patients under 65 receive aggressive treatment during final month of life...” halbert, complier and Tim G were all participants in that thread.

What else can physicians do to enable more compassionate care at end-of-life, and steer patient/family decision making?

How about training in geriatrics during med school? That seems to be one theme of the book-the need for more education. That being said, different doctors have different philosophy and personalities (just like their patients). Some want to fight to the bitter end, some are more interested in QOL.

Would you ask your spouse read Being Mortal?

We have discussed some things from the book and some comments from this discussion, but right now is probably not the best time-- Lupron has taken a toll on him.

halbert said...
...What I wonder is, what if, at the time of the cancer diagnosis, if one of the doctors had said (or maybe they did and the family rejected it), "she's in her 90's. Talking about 5 year survival is silly at her age. Let's take her home and call hospice."

To do this requires a level of detachment and external evaluation. Those immediately close (next of kin, etc) frequently cannot see the path they're on. This, to me, is the central dilemma of the book...and the situations. How do we get those who are actually making the decisions to ask themselves the hard questions that need to be asked in real time?

The responsibility is, I believe, shared...I believe what you've said here echos this belief. Your example of the 90-YO diagnosed with patient treated with surgery and chemo sounds like it could have been a case right out of the book...but you're right we don't know what the doctor advised the family. In hindsight, it's possible the family recognizes these steps as torturous for your friend's mother, but it was difficult to see at the time. Gawande stresses the need for better medical training to overcome the desire to keep fixing things, and to impart a more compassionate ending. The doctor's input can be very influential and may or may not have been given and may or may not have ultimately been in the patient's best interest (we see the same influential—and possibly misguided—guidance regarding treatment here at HW/PC, so this comes as not a complete surprise).

But to your last question, "How do we get those who are actually making the decisions to ask themselves the hard questions...?" is a huge challenge. Reading this book seems like it could help—it elevates "awareness" of the issue. I would hope that those who have read the book may now be better equipped to make the decision on when enough-is-enough. Let me put that in a question to all readers: Having now read the book Being Mortal, do you feel better equipped to help a close loved one (or yourself) with critical end-of-life treatment continuation decisions? What are other ways that "awareness" can be raised other than asking everyone to read this book?

Post Edited (JackH) : 2/8/2017 8:36:41 AM (GMT-7)

Having watched my husband undergo many different treatments for his cancer, I have found myself pondering the question "What would I do differently if it was me or would I keep pursuing each treatment as it's offered? It seems, as a cancer patient keeps failing one treatment, then the next and so on, there comes a time to say no more. But, my husband feels differently than I and willingly moves on to the next offered treatment and is happy when his numbers improve for a short time. We discuss QOL issues frequently BUT I am not driving this train...his perception of QOL keeps changing as he gets sicker. That is why I totally agree with Dr. Gawande about discussing end-of-life issues repeatedly with your loved one.

>>>>>>>>>>>>>>>>
Having now read the book Being Mortal, do you feel better equipped to help a close loved one (or yourself) with critical end-of-life treatment continuation decisions?
>>>>>>>>>>>>>>>>>>>>>>>>>.
In my case, the answer is "NO."
The book was preaching to the choir (me). My wife and I had dealt with these issues and fashioned legal documents to make our wishes known. The book pretty much confirmed our thoughts.

My fear: will any of these documents be worth a darn when reality and end-of-life issues really occur?
The book paints a good picture of doctors as information providers, but a lousy picture in terms of helping us make compassionate end-of-life decisions.

This leads to other related questions.
Almost all of us deal with many doctors. Do you folks have a sense of whether or not your doctors will do the "right thing" at the end? I sure don't. Besides that, I have no clue who will be making such decisions. Probably some hospitalist I don't even know.

Mel

Mel -

Got it. Thanks.

I hear ya. It is very unlikely that our local doctor would be involved at the end

Mel

halbert said...
To respond to two different ideas floated in the last few days...

What stage of grief are we in as a society? To use the model, we are in denial. Not just about death specifically, but about aging generally. How many ads, websites, supplements, etc are promising that we should be just a energetic, spontaneous, athletic, sexual, etc at 60 as we were at 20? On this forum, we have endless and recurring threads about our sexual function...and rarely do we ever admit that pre-treatment we weren't the studs we thought we were at 20...so why are we surprised that we're not that stud after treatment?

Our whole system of dealing with death, as a society, is to deny it's reality. Even the language we use is careful and euphemistic. Think about it: dressing a corpse in it's best clothes and sealing it in a concrete vault is a not-so-subtle form of denial.

How do we make sure the 'extraordinary means' aren't taken in a moment of crisis? That one I don't know. The list of possible actions that fall in that category is too long to list...and certainly too long for the EMT to read in the back of a moving ambulance. Unfortunately, sometimes that question falls in the category of things that we look back and see the beginning of the cascade, but don't recognize it in real time when it starts.

I agree, Halbert. Tolstoy's short story, The Death of Ivan Ilych, to which Gawande refers, is about this as well.