Death. A five-letter word. The inevitable conclusion to our accomplishments, dreams, emotions and essence. Feared and ignored by the well, acknowledged and perhaps even welcomed by the ailing.
As physicians we are constantly gambling against this inevitability, playing the odds with our arsenal of diagnostics and therapeutics. Even when the odds against us grow longer, we forge ahead, bidding to prolong life through technology and wonder drugs.
Many times, staring into the tired, tortured eyes of a frail and debilitated patient while preparing to subject him or her to painful tests and treatments with a stroke of my pen, I wonder, Why do I insist on playing this game when the house is likely to win? Isn’t the whole point of gambling knowing when to quit, knowing how to cut your losses?
These questions came to mind when, as a medical resident, I took over the care of Jane Barnstable, a 61-year-old woman with terminal leukemia, admitted to the hospital because of general weakness and low blood pressure, and transferred to the ICU on account of worsening metabolic abnormalities.
When I first met Jane, I was struck by her vibrant, put-together look–her short, well-groomed hair, her smiling countenance touched by make-up. I soon learned that she was a beloved wife and sibling, judging by the husband and brother who sat attentively at her bedside, and that she and her husband had two cherished twenty-something daughters.
With little bitterness, Jane recounted her protracted medical ordeal, from the initial, innocuous anemia to a splenectomy and eventually a diagnosis of a relatively rare form of leukemia, a blood cancer. She had been told at the time of her diagnosis, one year prior, that her life expectancy was about five years. She and her husband William had decided not to share this news with their daughters: “We wanted to protect them and allow them to get on with their own lives.”
Until recently, she’d been able to enjoy her life with few limitations. She had received chemotherapy and had been told that her cancer was “under control.” A few months back, she’d come into the hospital with a similar weakness and fever, and had been discharged after a week of antibiotics and hydration. She appeared to believe that this hospital visit would run the same course, and that she’d be back home before long.
As I hovered over the computer reviewing her blood counts–dismal, and getting worse–I saw how many specialists had been invited to gamble, play their cards and call each others’ bluffs. The oncologist didn’t believe that her deterioration was being caused by the cancer, and so he’d passed to the infectious-disease specialist. This doctor had treated her with his impressive repertoire of bug-busters, then had passed to the gastroenterologist to have her belly pain evaluated. The gastroenterologist had sent her for further scans, which were inconclusive, then had passed to the surgeon. The surgeon had chucked in his hand, unwilling to make a bid unless she worsened further. Next invited into the game had been the nephrologist, as her blood acid levels had significantly worsened and she was getting tired of having such trouble breathing. Now, in the latest round of the game, further tests and treatments had been ordered, and the players’ conversations centered on watchful waiting.
Meanwhile, Jane and William had been kept in the dark about the bad hand they’d been dealt. All the specialist-gamblers had gone in and told them what they could do, but not whether they thought it would really work. They’d discussed that amongst themselves or noted Jane’s “grave prognosis” (the actual words) in the chart.
As days passed, I saw the once-hopeful light in Jane’s eyes turn to quiet, unspoken fear. Her formerly optimistic enquiries about her condition became despairing pleas for comfort and relief.
Seeing that the endgame was approaching, I grew concerned that so little had been done to prepare Jane or her family.
I approached William.
“Call your daughters,” I told him gently. “Get them here as soon as possible, because I think Jane is going to tire out soon and will need a ventilator. I can’t guarantee that she’ll ever come off that ventilator. In fact, it seems unlikely.”
Thus began a more open–and more painful–dialogue amongst the players about the inevitable conclusion. William began to ask the right questions, and he was alarmed enough by the answers to call his daughters, who made their way to Jane’s bedside as quickly as possible. Unfortunately, one was abroad and arrived only after her mother had been intubated and was swollen beyond recognition.
A day later, Jane’s family withdrew all care and bid their final farewells; she died shortly thereafter. As I paid my condolences to them, one daughter said, “Thank you so much for having my father call me when he did. I got to speak to her one last time and tell her how much I love her.” My only regret was that I didn’t speak sooner, so that her sister might have had the time to reach her mother’s bedside before she was beyond speech.
Thinking back on this case, I hope that by talking openly about Jane’s last, spiraling decline, I gave her a chance to receive the palliative care and comfort so long overdue, and her family a chance to get the emotional support they so deserved. I treasure the letter of gratitude they wrote to a fellow resident and myself as a testament to this.
Through my dealings with Jane and others like her, I’ve discovered that using the word “dying,” in its very simplicity, can offer patients a sense of acceptance and free their loved ones from futile hope and needless guilt. As I continue to learn the fine art of playing this game we call medicine, I hope I’ll remember to keep my cards close to my chest only when necessary, to have the wisdom to recognize a bad hand and, when required, the courage to fold early.
About the author:
Rashmi Kaura is a UK-born and -trained physician who recently moved to the US with her husband. She is currently completing a residency program in internal medicine at Overlook Hospital, in Summit, NJ. “As part of our training, we are encouraged to write narrative essays by program director Dr. Jeffrey Brensilver and humanities director Nancy Gross. It is to them, and to all of the patients for whom I have had the honor and privilege of caring, that I dedicate this piece.”