I'm a physician. A professional. I’m not suppose to make mistakes, and I'm not suppose to play favorites...not when it comes to patients.
But I'm also unabashedly human.
A couple of months ago I met a gentleman...let's call him Bill...in my outpatient palliative care clinic. To ease the burden on patients and families, we often piggyback our visits onto their already-scheduled appointments with their oncologists, and such was the case the first time I met Bill. My colleague who also covered my clinic site had been caring for him longitudinally for months to that point, but she was moving on to greener pastures, and I would thus begin overseeing the majority of his comfort- and quality of life-focused care from that point on.
My nurse and social worker, who both had known him from the time he’d first started under the care of my colleague, advised me to get ready: I was about to meet one helluva guy. And I thought, well, of course...by and large, they’re all ‘helluva’ guys...or gals for that matter. The folks we see have learned, to varying degrees of success, how to live life gracefully in the face of serious and often very debilitating illnesses, and you can’t really do that without cultivating some healthy perspectives on life, death, and everything in between--and perhaps even beyond.
Despite this, Bill still managed to stand out from the crowd. Clinically speaking he was facing some pretty insurmountable odds, undergoing aggressive chemotherapy for a cancer that had riddled his liver and spleen with hormonally active tumors in the hopes of living as long as possible with an ultimately incurable condition. And in the back of his mind, he knew this. But the treatment was also doing quite a number on his sensory nerves, stirring them to an unrelenting fever pitch that caused a searing electrical sensation in his hands and feet, and his energy levels had fallen next to nil. Even his sense of taste wasn’t spared, with his appetite and enjoyment of food declining in sharp correspondence. But his most recent CT scan had shown that the tumors were shrinking or at least being held at bay, and as long as that was the case--’fighter’ that he was--we assumed he would opt to soldier on.
All the while, he bore the most earnest and luminous smile you ever saw across his countenance, and his eyes twinkled brightly with warmth and invitation. His grace and gratitude for every single member of his healthcare team, whether inpatient or outpatient, from housekeeper to food service worker to physical therapist to physician, never once betrayed his daily struggles. He and his wife Ella regarded me on that first meeting as if we’d known each other half a lifetime: their trust and faith in me was instantaneous despite being entirely unearned. If that’s not privilege, I don’t know what is.
Our introductory meeting was pretty brief and informal, and we agreed to meet again after his next follow-up appointment with his oncologist to reassess how he was doing. In the intervening weeks, though, we fielded multiple calls from Ella, who was distressed to see Bill struggling so much with the cancer or perhaps with the treatment--she couldn’t quite discern which seemed to be the greater devil. But we all on the care team side of things shared a strong if unspoken hunch: In the back of our minds, we were thinking this wasn’t an either/or proposition--both were likely to blame. Ella spoke, too, of his ever-increasing anxiety as the dawning reality of his mortality began to nip mercilessly at his heels.
I hate to inform those of you who may hold false beliefs and comforts otherwise, but I think I do you a disservice to tell you anything other than the unvarnished truth: While medical textbooks are largely written in black and white, the human body and spirit and the practice of medicine are all delirious shades of gray. Practice medicine long enough, and you learn to welcome the good graces of humility lest you get burned by the flames of pride. We learn to think in terms of odds, to speak in the language of likelihoods and probabilities, to make treatment decisions and prognostications on best educated guesses rather than hard and fast facts. Because in physiological terms, 1 plus 1 does not always equal 2, and the human spirit--that intangible substance that somehow binds our synaptic biochemical transmissions into a soulful and creative whole--injects an influence that simply defies measure. As such, you’d think then that the holy grail of every clinician is to endeavor to get it right as often as possible--I mean, how could this not be the standard by which we measure our success? Imagine, then, the cognitive dissonance that results when you hope and pray that you couldn’t be more wrong...if you could be dead, 100% wrong about things, just this one time.
And imagine, then, the inner tumult that results when you find out that you were, in fact, right. Goddamn it, you were right...
Bill faithfully kept his appointment with his oncologist Dr. Caspin, who caught me whilst en route back to his office after concluding their visit, while I was heading the opposite way to begin ours. “His cancer’s worse,” he said to me. “And the chemo’s been hard on him.” I kept silent. Or perhaps I allowed an expletive to quietly breach my lips, I can’t quite remember. “I told him there was one more cancer treatment we could try, but the odds of it helping are long, and he’s thinking about not going through with it.”
“They’re looking forward to talking with you,” he finished.
I felt my spirit give a little, ever so imperceptibly at first before the collapse quickened with each passing footfall that brought me and my nurse closer to the clinic room door, behind which Bill, Ella, and their college-aged daughter were awaiting our arrival.
I took a few deep breaths to steel myself, gave a gentle courtesy knock on the door, and pushed it open.
“Hi, Bill and Ella! So good to see you again!” I said in admittedly feigned cheeriness as my nurse reached out her hand to him in greeting.
“Forget that,” Bill said. “I want a hug!” And after warmly embracing my nurse, he turned his attention towards me, that effervescent smile and those glints in his eyes as radiant as ever: “And one from you, too!” he said. Instantly my spirits rose, and that simple act of forsaking handshake for hug seemed to reconstitute and fortify what just moments before had lain in seemingly irreparable shambles deep inside me. Ella greeted us likewise with equal warmth and affection, and after introducing us to their daughter, we all sat down, Bill on the exam table, my nurse on the stool, and me in an available guest chair.
“Dr. Caspin updated me on the news,” I said. “Gosh darn it.”
Bill shrugged in resignation: “Yeah, what are you gonna do?” And from that point on we just let them talk, keen to the task of listening to what they were saying and how they were saying it, rather than thinking about how we were going to respond. No, on this particular occasion, sending in the brain to perform the heart’s labor would have been wholly inappropriate.
They spoke of the profundity of his fatigue and avolition with his most recent round of chemo. Indeed, a few days prior to this appointment, my social worker had conferred with Dr. Caspin to relay Ella’s concerns about Bill’s poor tolerance of the chemo. He discussed Bill’s desire to be able to fly to Pennsylvania to see his parents and brother the following month and whether the cancer treatment could be put on hold without jeopardizing his health so that he could marshal the stamina to see his wish through. Dr. Caspin graciously understood the importance of this endeavor--or perhaps he knew that clinically none of it would ultimately come to matter in the grand scheme of things--and said he would present him with the option of delaying chemo until after he returned from the trip if that was indeed what Bill wanted.
“Dr. Caspin tells me there’s a 10% chance of this other drug working, but I don’t know...the last regimen was just so hard on me,” Bill continued. “And I really want to make it back to Philadelphia to see my family at the end of the month.” Bill spoke lovingly of his close relationship with his brother. They were kindred spirits, and understanding that his time might be short, he wanted to be able to see him again, perhaps--or probably--for the last time in this earthly realm. He spoke, too, of a simple but treasured pleasure that chemo had long deprived him of: “And I really want to taste a good cheesesteak again!” (noting, naturally, that they’re not called “Philly cheesesteaks” in Philadelphia--they’re just simply cheesesteaks). “The chemo’s just wreaked havoc on my taste buds, man...I’m hoping with the treatment break my sense of taste will come back in time for the trip. Right now, all I can do is remember how a good cheesesteak tastes...” He closed his eyes and pantomimed holding a sandwich to his mouth, looking for all the world like he was auditioning for a Carl’s Jr. commercial--and the leading candidate to land the role to boot. “Oh, man...I can’t wait!” he said as his huge smile somehow manage to grow even bigger, earning hearty laughs all around.
The conversation continued: “You know, I’m just so thankful for everyone who’s helped take care of me since this cancer thing all began. Everyone’s been so kind and patient and understanding with me. And you guys, especially...At first I was a little hesitant about being referred to you, but you guys really showed me that palliative care wasn’t just about end of life, and I can’t tell you how much we’ve appreciated that.” Contrary to Ella’s reports of evolving angst and anxiety, an air of calm and contentedness seemed to permeate his being as the seconds ticked on, and rather abruptly, yet casually and completely without prompting, he shook his head softly but assuredly and said, “Nah, I don’t think I’m going to do any more chemo.” And by then I was never more convinced that that smile was a permanent fixture upon his face.
Some dialog naturally ensued from there, just to be sure he felt he’d had all the information he needed to be at peace--or at least as at peace as you possibly could be--with such a critical decision. He assured us he did. Another round of warm hugs, and I left the room to finish typing up an after-visit summary for him. My nurse caught up with me and shared her sudden epiphany: “Why don’t we refer him to hospice now? They can get to know him early and they might be able to facilitate transferring hospice services so that he’s covered when he travels.”
I blinked a couple of times as my cerebral hamster remounted its wheel. “Now why the hell didn’t I think of that??” I asked in genuine perplexion. After returning from the room to discuss this option with Bill and Ella, my nurse conveyed to me their hearty endorsement of the plan.
It wasn’t clear to me then at all why such an obviously helpful and logical next step had eluded my own thought process. It was only weeks later, sitting in my office and reviewing his chart to see how he was doing, that it crystallized for me. There were actually two reasons, I believe. The first was that some part of me didn’t want to admit that Bill was truly nearing the end of his life. And that naturally segued into the second reason: I just didn’t want to say goodbye to him.
Not this soon.
You see, once my palliative care patients go onto hospice, whether from clinic or from an inpatient referral, I rarely ever see them again unless they are somehow discharged from the service, perhaps because their goals of care have changed and they decide to revoke hospice, or because their condition stabilizes or improves such that they’re no longer appropriate for hospice--what we like to call “graduating” from hospice. But for Bill, we all knew there would be no commencement ceremony, and I’m sure he knew that, too.
I looked again at his chart notes. I glanced over at the calendar. The date for his trip back east was nigh, but by the looks of things, so was death. My social worker suspected the same, walking into the office I shared with my nurse one day and saying, “I don’t think he’s going to make it back east, unfortunately.” We both nodded in accord. “Heartbreaking,” said one of us. I can’t remember who.
Just a few days later, on my birthday, no less, I ended a late day at the hospital in my office with his chart open again. Ella had called the hospice team that morning wanting to be sure that the family was doing everything right in their care of him as his life appeared to be coming to a close. He sounded comfortable, though, even as he was becoming less and less responsive, but he was developing some gurgling respirations that concerned them. Fortunately, all they needed was a little advisement on repositioning as well as reassurances that such gurgling was a natural and generally undistressing part of the dying process.
That was the eve of his passing, I learned a couple days later.
During a quiet moment later that same day, I found myself musing on the profound imprint he left upon me and my team. Indeed, an earlier revelation was learning that both I and my nurse had needed every fiber of our respective being to fight back tears during the entirety of that last visit. I don’t think either of us were all that successful in doing so, though. And I’m not even sure that the sum total of time I spent face to face with him amounted to 30 degrees of movement across the clockface. But as is often the case in this line of work--indeed, in life--some things simply are beyond quantification. And as is my habit, I reflected upon whether I or my team could have done anything differently in the name of better service. Was there any way we might have helped actually get him on that flight to Pennsylvania?
I often get asked by people how I continue to do what I do, how I regather my energies and offer them up again so willingly, particularly when they see a patient’s case evolve in a direction they would never wish upon themselves--getting coded (i.e., having potentially painful resuscitation be attempted) in the face of an irrecoverable condition, for example. The truth is, as I alluded to earlier, I’m human, and there are times when I falter. There always will be. But I tell them, as long as I cleave to the adage that I’ve cultivated over the years, I’ll never find myself feeling like I’ve misstepped or failed a patient or family along the way, and I’m always self-rejuvenated knowing that my efforts made a terrible situation as un-terrible as possible for all. And that adage is this: Trust and invest in going about the ‘process’ of care in the best way you know how, and the best possible outcome for that patient and family will result. In other words, don’t project a particular outcome coming to pass as your measuring stick for a job well done. It may seem like the best ending from your perspective as shaped by your knowledge and values, but that perspective and those values may not be shared by all much less the patient or family you’re serving, and ‘forcing’ things to effect such an outcome will ultimately be less helpful and potentially more damaging to them than you’d ever intended.
Upon further reflection, then, Bill’s trip back east was never going to happen--we just couldn’t possibly have determined that to be the case at the time. But the efforts to engage Dr. Caspin about the possibility of delaying further cancer treatment, the willingness to present that option to Bill and his family, the process of informing them of how likely or unlikely further cancer treatment was likely to be in helping him achieve his goals--be they to live longer, live better, or do both--all helped Bill regain as much command over his life as possible when his cancer theretofore had wrested so much of it away.
No, Bill didn’t make it to Pennsylvania...he didn’t get to see his parents or his brother one last time...and he didn’t get to savor the aroma and flavors of one last cheesesteak before leaving this corporeal world...all that indeed is heartbreaking. But in no way did anyone ever fail him, and he in turn never failed to remain true to his enlightened spirit while imparting his grace and uplift upon all those fortunate enough to have known him.
In retrospect, then, perhaps the only place I might have erred was in not upholding my other adage, one that’s more to do with my general take on life than with my practice of palliative medicine per se, and one that might have allowed me to think of offering the hospice referral to Bill before leaving the exam room that day: I should never have been so averse to the notion of saying goodbye to him in the first place...because in my world, there are no Goodbyes, only See you laters.
So what’s Bill’s fate from here? I know a lot of people espouse some pretty firm beliefs about what, if anything, lies beyond life’s threshold. I, for one, do not profess to know, as I’ve yet to commune with anyone (or anything) with firsthand knowledge. You may call that ignorance or humility or something else altogether...but please don’t call it a lack of faith or enlightenment. I couldn’t do what I do nor find meaning and purpose in life if I didn’t harbor faith in a power beyond my perception and understanding. I’m cursed with insatiable curiosity and perhaps a touch of insecurity about the unknown as well, but the power of imagination is perhaps an offsetting blessing.
I’ll imagine, then, that which I find most comforting...that Bill, emancipated finally from the constraints of flesh and affliction, is en route to somewhere of his own free will.
I’ll imagine, Next stop: Philly.