On a sun-drenched October afternoon I drove to meet my husband, Ralph, and daughter, Lori, in the office of Ralph's new doctor, an oncologist at a large cancer hospital. Today we would hear the results of lab work conducted during his initial visit a week earlier. After a pesky sore throat, standard blood work had revealed that Ralph had severe anemia, hence the additional testing. Although I was frightened, I reminded myself that we lived only fifteen minutes from this fine cancer facility...if we needed it.
When I arrived, Ralph and Lori were already in a small examining room. The doctor, a balding middle-aged man in physician's uniform of long white coat, entered. His trousers were precisely creased, his shoes shined to a gleam. A perfectionist, I told myself, a no-nonsense doctor.
After a brief greeting, he listened to Ralph's heart, then sat down and leafed through the sheaf of papers centered on his desk. "Your lab tests are in," he said, "You have acute myelogenous leukemia."
Yes, no nonsense, no beating about the bush from this man. He delivered the words with the sting of a slap.
"There are seven varieties of AML," he continued. "Yours is M6, erythrocytic, in which chromosomes are transposed. It's an extremely difficult one to cure."
His words sounded like a death sentence. Doubtless this man handed them out every day, but for us, this was the one and only.
The doctor glanced at his papers. "Sir, last week you mentioned wanting to participate in a clinical trial." Ralph nodded and the doctor rose. "The research nurse will explain it to you."
As he started for the door, Lori asked, "And if he decides on standard treatment, then what do we do?"
The doctor whipped around and scowled at her. He turned to Ralph. "Leave," he replied. "Go back to your regular doctor. Standard treatment is not what this hospital is about." While the three of us stared at him in shock, he continued. "Where would medical science be if we just gave standard treatments? Fifty years behind where we are now." Had there been a soapbox in the room, he surely would have jumped up on it. His voice rose. "This is one of the largest leukemia centers in the world. Clinical trials are what we do."
"I said I was interested in a clinical trial," Ralph said quietly.
"Good. I'll send in the nurse." Without inviting further questions or uttering a word of farewell, the doctor strode from room.
After speaking to the nurse, we trudged out of the hospital into an afternoon that no longer seemed bright. We were too stunned to speak, to pursue the issue raised that day. But now, five years later, it still churns in my mind.
Where is the line between medicine serving the patient and the patient contributing to medical science?
Ralph chose to do both, to give and receive, but he chose freely. If he hadn't, would the doctor's lecture have persuaded him to forego treatment in this acclaimed facility? I'm sure the hospital wouldn't have denied him treatment , But he--all of us--were vulnerable just moments after being handed a shattering diagnosis, and we might well have slunk out of the building and left its innovative approaches behind.
We didn't, but, I am compelled to ask: Once someone contracts a disease, does he automatically take on an obligation, not just to himself, but to humanity? Does he become a "lab rat," with responsibility to undergo an experimental treatment in order to further medical knowledge? Doesn't the patient have to consider the cost/benefit to himself, over and above the benefit to society?
I read an article in the local newspaper recently about advances in cancer treatment, and I know these breakthroughs rest on the results of clinical trials. In that respect, Ralph's doctor was correct: Where would medicine be if not for the willingness of patients to try new approaches to curing their diseases? But many people enroll in trials as a last resort, when standard therapy has failed or when their disease is so advanced and options so few that participating in a trial is worth the gamble. Ralph fell into neither of those categories.
Perhaps if the doctor had been gentler, kinder, more patient-friendly, he wouldn't have framed his answer to Lori's question in terms of patient responsibility. What if, when asked about standard treatment, he'd said, "We don't use a standard treatment; instead, we tailor treatments to fit each patient's needs. We encourage clinical trials, but after you hear what the nurse says, you can make up your mind-choose between a clinical trial, individualized treatment here or standard treatment with your regular doctor." But he didn't.
Like all professionals, doctors have different styles of interaction, but when they inform the patient about a possibly terminal illness, shouldn't they soften the blow with a modicum of kindness? Many patients want to know the real prognosis for their illness, not the sugar-coated version. But the same words delivered with compassion can make all the difference in one's ability to cope with a deadly disease. Too bad "bedside manner" isn't part of a medical education.
Which brings me to the story of Ralph's last doctor. A year later, after a successful stem cell transplant was compromised by medical mishaps, Ralph relapsed. What were his options, we asked. Doctor 2 sat with us as if he had all the time in the world and honestly but gently outlined the choices. Another transplant was out of the question, a stem cell booster would put Ralph at risk for serious complications, chemo might add a few months to his life but would make him sicker. The physician spoke to us with kindness but allowed us to come to a conclusion on our own. Further treatment, we decided, was not a viable choice.
In these circumstances another doctor might have pressed Ralph to fight on, to exhaust every option, if not to cure the cancer, at least to prolong his life. No matter the length or quality of that life, many physicians are committed to extending it. I understand. That's the core of their training.
In his compassionate book, How We Die, Sherwin Nuland says. "The quest of every doctor in approaching serious disease is to make the diagnosis and design and carry out the specific cure. This quest, I call The Riddle. The satisfaction of solving The Riddle is its own reward. It is every doctor's measure of his own abilities; it is the most important ingredient in his professional self-image...Pursuing treatment against great odds may seem like a heroic act to some, but too commonly it is a form of unwitting disservice to patients. It blurs the borders of candor and reveals a fundamental schism between the best interests of patients and their families on the one hand and of physicians on the other."
How would Ralph's first doctor have handled the questions at the end? Would he have advised another clinical trial, more rounds of chemotherapy, a futile second transplant? We will never know, but I'm grateful we didn't have to find out.
Such a difference in attitude from Doctor 2. He eased Ralph's final days, made us laugh, treated Ralph as a human being, an individual. In my imaginary bedside manner class, he'd have gotten an A+.
"Death belongs to the dying and to those who love them," Nuland says. So does illness.
Physicians must take this to heart and make it part of their interaction with patients from their initial diagnosis until the end. This approach makes medicine not only a science but an art.
Thelma Zirkelbach began writing creative non-fiction after the death of her husband four years ago. Prior to that she wrote romance novels for Harlequin/Silhouette. Her latest romance, A Candle for Nick, won Book Buyers' Best long contemporary romance for 2006. She is a speech-language pathologist, specializing in language-learning disorders. She has three children and two grandchildren. She lives in Houston. Her blog, WidowSphere: A Circle of Hope can be found at www.widowsphere.blogspot.com.