The World Still Out There

Jim and I during the last family vacation he planned

More than a year ago, after my husband was diagnosed with pancreatic cancer, I began writing.  At first I wrote about appointments and logistics, then immense disappointments and more logistics.   Eventually I wrote much more as I waited at appointments, and waited by my husband’s bedside.   Some people who read my expanding missives, posted for a private community within a larger site (Lotsahelpinghands), began identifying them as blog entries.  They suggested that I share them with a wider circle.

Today I become a real blogger.

I’d like to start here long after the end of the medical portion of this ordeal.   Today marks exactly one month after what would and should have been my husband Jim’s birthday.  In honor of him on that occasion I gave a talk at the hospital where he was the first Chief Medical Officer.  It was about our family’s experiences in the treatment of a dying physician, and about the treatment of seriously ill patients (physicians or not) known well by a treating physician.

Before speaking to the group of physicians I circulated a chapter from a book I have written for my children.   (I will have one of those children help me post excerpts from that chapter–Numbing Numbers. )

The day after the talk, a physician who had been there and whom I did not know wrote to say he works with nursing home patients.  He thanked me  for sharing our experiences and helping him to “open a door” that he said is easy for physicians to keep closed, even–and maybe especially–among the constant presence of dying and death.

These are the remarks I prepared:

First a disclaimer, because I’ve seen the email to the staff: my book isn’t really about Jim’s dying.  That may well be the most central event in my life and our children’s lives, certainly now, but it wasn’t in his, and I know he wouldn’t want us to focus on the dying part–but for the way he did it. 

Jim never would have let good data go to waste.

I want to talk tonight about his experience as a patient, and how he was cared for by fellow physicians.

It happens that a few days ago, a physician named Ken Murray published an article titled, “How Doctors Die” (linked by Andrew Sullivan) in which he wrote:

      “It’s not a frequent topic of discussion, but doctors die, too.  And they don’t die like the rest of us.  What’s unusual about them is not how      much treatment they get compared to most Americans, but how little.  For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves.  They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want.  But they go gently.”

This was very much true for Jim. 

But I think there is a vast difference between the doctor as patient and the doctors who treat a dying patient who is a physician.  

Jim was treated at three different hospitals.  At a Boston teaching hospital where he tended to be addressed as “Mr. Glennon,” we could not help noticing the ethos was different: we were always being presented with high-action verbs, aggressive options, new things to try, new places to go.  

Jim didn’t want that.  He wanted what was reasonable to try, and no more.  

The main reason I circulated the “Numbers” chapter of the book for my children is that I think Jim’s experience as a physician-patient at this hospital is not atypical, especially when it came to physicians’ optimism about outcomes for patients they know.  Optimism and hope certainly are not bad things, and I think they are an essential part of the adventure of a life Jim had. 

Jim’s experience bore out with uncanny mathematical precision the research referred to in Atul Gawande’s “Letting Go”: the better the doctor knows a patient, the more likely she or he is to overestimate that patient’s survival time–and not, as he put it, “by a shade,” but by in the neighborhood of 550%.  

I don’t know anything about health care systems, complex systems.  Jim knew a great deal.  I’ve been an observer and very unwilling participant, dragged kicking and screaming by this diagnosis, in the whole process.  I think the only way I got through those first months was to work with my own special mythology–that the hospital administration had somehow pulled off the most elaborate internal quality control experiment ever, and that this wasn’t real.   I still frequently resist the idea that any of this is real.  

But I do know that if Jim were here, he would use the best and worst of our experiences in this system and see what everyone could learn from them. 

One thing we learned is that people treat physicians differently than other patients.  The upside is they tend to get seen much faster.  Jim happened to have some astonishing resources.  My uncle was a cancer researcher at the National Institutes of Health who put him in touch with a former head of the Dana Farber Cancer Institute and also consulted with a Nobel Prize winner on his behalf over the seemingly endless July 4th weekend soon after his diagnosis.   My father happened to be a physicist at Harvard, where an original cyclotron was built for physics experiments, and eventually used for proton therapy.  Its later iterations evolved into the machinery at the Burr Proton Therapy Center, which  conducts clinical trials on certain kinds of cancers—including, at the time of Jim’s diagnosis, tumors at the other end of the pancreas than his primary tumor.  We immediately could get through to people running current clinical trials and get all the second opinions anyone ever could want.

With those medical resources came the peace of mind of knowing that no matter what the outcome, Jim could not have received better technical medical resources and advice.   

But those turned out not to be the resources that counted most, not by a long shot.  And I’ll get back to that.

The two most common reactions I observed among the dozens of physicians who treated Jim were polar opposites:

In some instances, the fact that there was any prior relationship between Jim and the treating physician was merely the Elephant in the Room.  It went conspicuously unmentioned. 

Some doctors later told me they had understandably conflicted feelings about treating Jim, but from my end, treating him as if he were a patient with whom the caregiver had no history seemed peculiar and uncomfortable. 

Most frequently, he was treated as a patient as if he already knew everything a medical expert in any field possibly could know.  Doctors did not bother explaining things.  And of course Jim almost always did know and immediately understand all of the medical and technical minutiae, and he researched what he didn’t already know.  When one of my daughters took over his Kindle just a few weeks ago she looked up at me sadly, and I asked her, “Is it what’s on there?”  I had never looked.  What she found on it was a handful of books, including one about Custer’s Last Stand, and a parade of  of disheartening journal articles about pancreatic cancer.  There was probably nothing medically that Jim did not read and understand about his condition.  

During Jim’s treatment I was always in the examining room, but I need not have been.  Especially early on, I was very much in shock.  I scribbled down notes from an oncologist we spoke to at the Lahey Clinic, and the only time that doctor broke eye contact with Jim was to bark out to me, “You don’t have to write this down.” 

Well, yes, I did.  Jim didn’t need to write things down, but if I was picking up on a tenth of what I needed to know even just as a caregiver and record-collector and chauffeur, I would have been surprised. 

It seems to me that to Jim as the patient, the most unfair part of this approach of assuming he knew everything as a physician was at least two-fold: first, it put him in the position of having to devote considerable time and energy to being the doctor explaining things to me, our children, and our non-medical family and friends. 

Unquestionably the worst such instance was when he was given the results of his follow-up imaging, which showed the cancer had metastasized.  Because when I say he was given the results I mean that literally: nothing was said between the surgeon and his physician patient.  That Boston surgeon simply handed Jim the radiologist’s report to read for himself. 

Second, treating Jim as a physician first seemed to me to impose on him a burden to do more on his own, to coordinate his care, even to remember to collect and transport discs with his scans—in short to be something more than a patient, when being a patient alone in such circumstances was more than most people could bear.   

And with a very serious or terminal illness, both the word clouds flying between a physician patient and treating physician, and the things left unsaid because the patient is assumed to know them, can create additional problems.  It’s overwhelmingly likely that in these cases eventually a non-medical family member like me will need to take over under a health care proxy, and needs to truly understand both the medical issues and the patient’s desires and make sure they’re carried out when he can’t.  This requires being included in and led through some of these technical conversations.

I think fundamentally many physicians don’t know how much you know about the dying process—and how very little the rest of us know.

We also were both surprised to learn no one wants to talk to a physician patient about his death—even a patient who is completely willing to discuss it.

Metastatic pancreatic cancer has an average survival time of about three-to-six months from diagnosis, and the upper end of that time frame coincides with the qualifying period for entering most hospice care.  Yet among the dozens of health care professionals we saw over eight months, not a single one brought up hospice care with us.  During Jim’s second emergency hospitalization, during the last weeks of his life, he picked up the phone and referred himself.

No one wanted to bring up the need for paperwork, including a portable DNR.   Here we were, both professionals who thought all of our planning and paperwork was in order.  It wasn’t.  No one had that discussion with us, I can only assume because they assumed Jim knew all these things.

And even among physicians who specialize in the highest-mortality diseases, very few even obliquely were willing to use any variation of the word “death.” 

I remember one hallway conversation with a physician who couldn’t bring himself to say the word, even when everyone knew the diagnosis was terminal.  Instead he talked about the “disease being one which would eventually bring about his demise.”

I’m a lawyer.  I like ten-dollar words as much as anyone and I never stopped wanting to flee the room when Jim would talk about “when he was dead.”   

But one of the lessons I learned from Jim as a patient is that you have to be able to use straightforward words to discuss these things.   

You can be compassionate without giving false hope.  You can be realistic and thorough about options without being heartless.   You can tell patients that entering hospice isn’t giving up hope; it’s acknowledging the reality that your hope is no longer for a cure.  You can even admit this is hard to talk about.     

As an attorney, I’ve felt far more affinity and attachment to some crime victims’ families than others.  I don’t consider that unprofessional, and it doesn’t affect the way I do the technical part of my job; I consider it inevitable for a human being in any intensely consuming profession, where the stakes are so high.  I also know that when that has happened and I’ve expressed it to family members, they’ve appreciated knowing that their family member was more than just a victim to me, just as you may think of patients you know as more than just patients. 

I was a little bit hesitant to circulate the “Numbers” chapter only because I didn’t want you to misunderstand what I feel about hospital and hospice not being able to meet Jim’s needs at the end.  He got a lot of great medical care.  This isn’t a criticism of his care, but a recognition of the extraordinary personal human resources Jim had.

The reality is that given the medical complexity of his illness and symptoms, there was no form of institutional care that could have given him that gentle end he wanted and about which Dr. Murray wrote.  More important, there was no form of remotely standard care that could have permitted his to come home.  He needed 24-hour high-level medical care, but he and our children wanted and needed him to come home while he still could communicate with us.

That he got that wish does not represent a shortcoming of a health care system, but reflects the incredible gifts of friends and colleagues to this physician.  

Not everyone has a 24-hour a day personal physician.  We did: we had our friend Dr. Bob.  We also had a back-up roster of at least six physicians in this room, had Bob been willing to take a break. 

Medically, Jim sought the double-zero, and those of you who came to his service heard Bob talk about this: no pain, no nausea. 

Jim was only able to get this at home, with round-the-clock care from both family and physician friends, three of whom were at his side when he died.     

I was asked much later by a nurse what made the difference: how was this medically possible at home, but not in a hospital?  And, in typical lawyer fashion, I can only come up with a two-part answer:

Jim needed a third zero: zero delay, an instantaneous medical response to any change or sign of distress. 

Now, that alone is something that, with enough resources, a medical system might be able to provide.  But then there’s that tricky second part that circles back to the human relationship between a caregiver and a patient.    

I’ve realized that the reason Jim was able to have those amazing last days at home with his family and friends is that the people who took care of him at home knew him so well, and cared for him so much as a person—not a physician, not a patient.  They could read what he needed like no one else could, and could anticipate and immediately respond to whatever he needed to make him comfortable as no institutional form of care ever could have.    

One of my best friends has a sixteen-year-old daughter whose own best friend died of lymphoma weeks before Jim did.   She said to me, “Everyone should have a Dr. Bob.”     

Obviously there is no system that could make that happen.

I don’t think Jim would be pleased with my leaving it at this, in despair that other patients will ever have quite this kind of end-of-life-care.  

Parts of institutional processes could be examined, like benchmarks in response time for pain control medication.  Jim would have followed up on such protocols. 

And I’m all for the inclusion of family and friends in as many end-of-life medical procedures as they can handle.   This is very, very scary for non-medical people like me.  In the medical world I’m as squeamish as they come,  but from this experience I absolutely believe physicians should encourage it, and I know that I was capable of doing much more than I would have thought possible.  My children, who did not leave their father’s side, were nothing short of miraculous, taking on everything from generating computerized medication checklists to instructing Bob and me how to peel the backing off the new pain patches.        

A character named Stanley in Louis Sachar’s book Holes has to make his way across a desert full of formidable obstacles–including deadly spotted lizards–in order to save a friend.   His philosophy for getting through this was “He would only go halfway—halfway as far as he thought he could go, so that he’d still have the strength to return.”[i]  The rub, of course, is in the impossibility of knowing when one has gone more than half-way as far as one can muster the fortitude to continue.  As soon occurs to Stanley, “Maybe he’d already gone halfway and didn’t know it.”[ii]  

As physicians, I hope you will encourage your patients’ non-medical family members not just to participate in the medical conversations all along, but not to underestimate how far they can go and how much they can do. 

Appreciate how much you know as physicians, and know how helpful it can be for your patients’ families to have been active participants in end-of-life-care for the people they love. 

[i]    Louis Sacher, Holes (1998), p. 150. 

[ii]    Id., p. 152.

(c) 2012 Stephanie M. Glennon

About Stephanie

In her spare time, Stephanie works full-time, and then some, as an attorney. She has published articles and delivered talks in arcane fields like forensic evidentiary issues, jury instructions, and expert scientific witness preparation. She also is an adjunct professor at a law school on the banks of the Charles and loves that dirty water, as she will always think of Boston as her home. You are welcome to take a look at her Facebook author page, or follow @SMartinGlennon on Twitter. All content on this blog, unless otherwise attributed, is (c) 2012-2020 by Stephanie M. Glennon and should not be reproduced (in any form other than re-blogging in accordance with Wordpress protocol and the numerous other wee buttons at the bottom of each post) without the express permission of the domain holder.
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6 Responses to The World Still Out There

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