Tales of Survival-The Physician’s Stages of Grief (Based upon the Kübler-Ross Model)

August 4, 2017

GriefBy Lauren M. Young

Prologue/Narrowing a Diagnosis.  A 61 year-old African American male, with a longstanding history of right knee and lower back pain, presented to the Emergency Department for the fourth time in one month complaining of pain on the right side of his lower back.  He had also fallen – remarkably not the ‘chief complaint’ for this well-muscled, vibrant man who could “walk from Harlem to Coney Island” just a few weeks prior.  He was surprised when recently his knees “just buckled” beneath him upon standing, the event that had precipitated his first ED visit.  He also noted some weakness, and the falls happened a few more times, always out of the blue; his neighbors had started to notice, and it was embarrassing for him to hear them whisper.  He went to the ED a second and third time: he left the second time with muscle relaxants and ibuprofen; the third time he waited six hours without being seen and, holding onto walls and chairs, dragged his left leg, which “just wasn’t listening to his brain,” out the hospital door in frustration.  We initially met upon his admission to medicine following his fourth ED visit.  Were these sudden, unpredictable falls due to ischemic or hemorrhagic cerebrovascular events? Perhaps – he had a history of hypertension that hadn’t always been well-controlled – but he swore he took his medication “like clockwork,” and his non-contrast head CT agreed as it showed no evidence of stroke. Syncope? Unlikely, as his history and ECG attested.  Infection?  He had no fever or laboratory values to suggest so, but of course infections can hide, especially in the brain.  Would he consent to an HIV test? “Of course, Doc, but I’ve lived a squeaky clean life.”  A neurodegenerative or demyelinating disease like multiple sclerosis?  Certainly possible, though unlikely at this age with this abrupt onset, but let’s wait for the results of the MRI.

Having spent many years studying the molecular basis of oncology, and having witnessed my own uncle succumb quickly to a brain tumor in his early 50s – with the innocuous presentation of numbness in his left hand – my own biased, early diagnostic bet is on cancer.  The initial MRI images reveal a mess of bright spots in almost every slice of his brain, crossing the midline.  Malignancy quickly moves up the differential diagnostic chain, confirming my early, uneasy suspicion, a terribly Pyrrhic victory with a patient who has now endeared himself to our team.

  1. Doubt and Denial. The evidence for malignancy begins to mount as the lab results trickle in. There are no abnormalities in the CSF. The HIV test is negative.  But still we wait for signs of reversible causes.  We order more tests, looking for anything that will steer us away from the feared diagnosis of a primary malignancy.  A second MRI of his brain and spine strongly suggest a high grade, diffuse, and aggressive tumor, a likely glioblastoma multiforme (GBM).  Maybe the differential will change: have we thought of everything else it could be?  We are no longer scientists, we are not practicing evidence-based medicine; we are willfully ignoring the obvious with the hope of a diagnosis easier to digest.
  2. Anger. Acknowledging this line of thought as an entirely useless exercise, I cannot help but wonder why this patient’s symptoms were not recognized earlier.  How could there be so many ED visits?  Why do previous notes have an innuendo of psychiatric illness regarding his complaints? I perseverate on the details that surely should have raised the suspicion of any physician who listened to this man’s story and properly interrogated his physicality.  In addition, my team has grown to love this patient, his personality and stories, and his niceness now becomes implicated in his disease.  We’re angry: why are our most beloved patients the ones with such bad luck?  Cynicism creeps into our every clinical encounter, and we find injustice in the idea that the patients we would most like to help are the ones we cannot treat.  Later in the day, my intern and I see a patient with possible acute coronary syndrome, and he remarks darkly to me, “this guy is way too good a person to have negative troponins.”
  3. Bargaining. I call the lab, I walk to the lab, I meet the lab director. I implore her to expedite our patient’s tests so that we can make a more definitive diagnosis and move forward, as our patient’s symptoms are rapidly progressing: he is now experiencing daily headaches and losing vision in his left eye.  Secretly I hope they will find oligoclonal bands in his CSF indicative of MS, or perhaps cytological evidence of lymphoma, which is radiosensitive and treatable – results no one would want to hear, but diagnoses with a far better outlook than GBM.  The intern and I spend the days finding our patient a reclining chair, getting him a shave, bringing him double-stuffed Oreos to share with his granddaughter – their special routine – for her weekend visit.  When she arrives, our patient has just fallen on the way to the bathroom and become incontinent, an event he later describes as “devastating to my ego.” It feels like we will do anything to make his life better.
  4. Depression. I now detest that I was initially energized by this “interesting case.”  We deliver a likely diagnosis of GBM and convince our patient to allow his skull to be drilled open to confirm his dismal prognosis.  We speak in chunks, with each bedside visit revealing progressive pieces of a story with a terrible end.  When we finally say: “incurable,” “progressive,” and “less than a year,” we have exhausted our own emotional reserve, remaining strong and upbeat with the patient, exhaling deeply upon exit from his room.  On this day, the intern and I return to a rarely empty workroom, each of us ignoring the other’s sniffles and red eyes, although also not trying to hide them. We speak practical medicine to pass the time while the specter of our patient looms.  We repeat this ritual daily, once bringing the computer to show the patient his lesions at his request. The patient is the most gracious host, interested in our daily lives, quizzing us on movies, music, and sports, joking, thanking and propping us up, which only compounds our melancholy.
  5. Acceptance. I’m not so sure I’ve arrived here yet. But while the intern and I sit at the bedside and feed another terminal patient chocolate ice cream one afternoon, he gives me some sustaining advice:  “You’re going to be a doctor for a long time, and most of it is going to be work that is hard or annoying or boring, but enjoy these moments. These are the ones that matter.”

Epilogue.  The Kübler-Ross model is a well-accepted framework for how people experience grief, and it has been applied to many types of loss, including death of a loved one, loss of a job, divorce, and one’s own experience receiving a terminal diagnosis.  For the physician delivering this news, unfolding of grief may happen in parallel or may even anticipate the patient’s stages, since the physician generally recognizes the likelihood of a difficult diagnosis earlier than the patient.  Can the physician benefit from his own insight into the coping mechanisms he or she applies to these encounters to move more effectively forward through these stages?  What may provide some solace to the physician is that while he or she may feel the burden of responsibility in delivering this diagnosis, the physician and patient are in fact moving through a unique, shared experience of grief, and their disappointments and fears are indeed quite symmetric.

 

Our patient was transferred for specialized treatment and succumbed to his illness just ten weeks later. The intern sent me a message: “Our friend has passed away.”

Lauren Young is a 4th year medical student at NYU School of Medicine

Image courtesy of Wikimedia Commons

 

Leave a Reply

Your email address will not be published. Required fields are marked *