By Ronnie Enriquez Baticulon, MD
Earlier today, I saw two of my brain tumor patients’ follow-up in the Neurosurgery outpatient clinic. While both have made good recovery from their operations, their families’ worst fears had just been realized with the piece of paper that they brought with them, bearing the official pathology report stating that the tumor removed from the patient–as suspected from the start–was brain cancer.
Holding that piece of paper with all ears anticipating what I would say next, I had the unpleasant task of translating medical jargon into everyday language to finally disclose the diagnosis. To the patients and their families, it must have been an agonal wait. To me, I just never liked being the conveyor of bad news.
I have become used to apprising spouses, parents, children, or siblings on the poor prognosis of patients who sustained severe head injury or massive stroke and would likely die regardless of medical or surgical intervention. I would even say that I have become necessarily adept at it, easing the transition of loved ones from denial and anger to gradual acceptance. Often, the patient would already be in coma, hence one’s last wishes, if the patient ever drew up such a list in mind, would tragically be immaterial at this point.
The idealist in me had been a staunch believer in complete patient disclosure, until I started operating on patients with tumors this year. That was when I realized that to talk to a patient, someone who can hear and understand every word that you say, and to tell him or her that he or she is dying from cancer is as delicate as it is difficult.
Done improperly, I risk being outright cruel to someone who did not have long to live.
Relying on the closely knit Filipino family, I would often disclose the diagnosis and treatment plan to the relatives first. Inevitably, they are the first ones to feel aghast, express denial, or silently cry in their seats, even as they try to hold back the tears in an attempt to comprehend and continue discussing my treatment plan for the patient. Because the imaging findings of brain cancer are very characteristic, family conferences are held even before the patient undergoes the contemplated operation.
From these talks, I would try to gauge how the patient would accept the news, because I still believe that the patient should find out one way or another, especially if the patient has to undergo a major operation, with subsequent chemotherapy or radiation therapy. Some families have opted to tell the patient themselves after getting the official biopsy result, while others have allowed me to do the disclosure when they felt that their patient was ready.
“Anong stage na po, Dok?” (What stage is it, Doc?)
Unknown to many, brain tumors are graded, rather than staged like cancer elsewhere in the body. Many dread hearing the number four, as “Stage IV cancer” is almost always associated with poor prognosis and short survival.
As most non-medical people would say, “Kalat na” (It has spread) and “Wala nang pag-asa” (It’s hopeless). I would painstakingly explain that a grade III or IV brain tumor should not be equated to stage III and IV cancer, and that options are available for prolonging survival, if the patient and the family would give consent to continue treatment.
“Gaano pa katagal, Dok?” (How long will the patient live, Doc?)
This is one question in medicine that I wish I always knew the exact answer whenever a patient would ask. Given my limited operative experience thus far, I can only cite figures from books and journals–median survival, progression-free survival, life expectancy–but always with a disclaimer that there will be outliers who would live longer, stronger, and more fulfilling lives after cancer.
Am I being unfair and unrealistic by offering a glimmer of hope? Perhaps. But for now, I think I would rather do that, than have my patients leave the clinic or the hospital ward devastated, fixated on a time period stated by their surgeon. The cancer specialists you see on TV are being unnecessarily brutal and apathetic when the script goes, “You only have (insert number here) months to live.”
When you get to talk to patients, who you know are nearing the end of their time, and you listen to them as they tell you stories of what they like doing, what they have done for others, how much others mean to them, and how much impact they have with the little things that they continue to do every day, then you realize that no one has a right to put a period to someone’s life.
VitalSigns Issue 62 Vol. 3, April 1-30, 2014