My friend Dana had become alarmed at a canker sore under her tongue: “a white patch, the size of my pinkie fingernail.” Canker might be cancer, she immediately suspected, possibly signaling a recurrence of her endometrial disease. She called an ear, nose and throat practice and made an appointment for what turned out to be a biopsy.
A week later, a nurse phoned to read the pathology report: “Superficial fragment of moderate to severe dysplastic squamous epithelium, cannot rule out invasive squamous cell carcinoma.” Although Dana urged her to define these terms or explain their significance in this particular case, the nurse resisted, stating that the doctor would explain them in a follow-up appointment the next week.
Needless to say, Dana immediately went online where the definitions did not comfort her. At bedtime, she wept herself to sleep, worrying that she would again lose 15 pounds in radiation, imagining her tongue cut out, brooding over a recurrence and her father’s earlier vocal cord cancer, grieving over putting her children and husband through yet another round of treatment. Finally at the appointed consultation, the doctor said the patch was “probably not cancer.” The pathologists were just “covering themselves” by saying they could not it rule out. She was incensed at having been put through unnecessary distress.
As any medical practitioner knows, uttering the words “severe,” “invasive” and “carcinoma” to a patient in remission cannot but escalate terror. Why couldn’t the nurse or the doctor find the ways and means immediately — in a brief phone call or email — to put those fears in perspective?
Given the paperwork, the patient load, and the long hours of medical professionals, we all understand the constraints within which physicians and nurses operate. Surely neither the nurse nor the doctor was willfully unfeeling. However, their tardy and cryptic announcements resulted in callous care. Whether a medical judgment is optimistic or pessimistic, its inept conveyance can upset or infuriate already anxious patients.
Some of the women in my support group were alone, groggy from anesthesia, and in pain when a poorly articulated diagnosis of gynecological cancer unhinged them. After a debulking operation, Julia recalls, a resident involved in the surgery stood near the door, avoided eye contact, and declared, “Stage 3 — we’re not talking cure now, we’re talking treatment.” When I heard similar words, I was in a crowded emergency room with only a privacy curtain between me and other patients.
Julia, a practicing therapist, believes that “these events are so traumatic that medical professionals need to look out for our emotional welfare . . . to reduce the possibility of PTSD. The person in a life-threatening emergency needs specialized mental health care.” Upon hearing a diagnosis of cancer, patients can plummet into the depressing supposition that their life is effectively over and their rapidly impending death will be painful.
Another very private member of our group — I will use her initials, I.M. — suffered through a delay between intimations of bad news and a diagnosis. After a CT scan, a hospital technician warned I.M. that she might have cancer, but he did not have the authority to discuss the matter with her. She would have to wait until her gynecologist could meet with her — the longest and most harrowing period in her life, she said with a shiver.
None of us were eased by communication strategies that have evolved since 2000 when Dr. Walter F. Baile and his associates published their paradigm for delivering bad news in The Oncologist. This article advocates a program called Spikes: S stands for finding the appropriate setting; P for gauging the perceptions of the patient; I for obtaining the patient’s invitation to hear bad news; K for providing the knowledge that the patient needs to receive; E for dealing with the emotional reactions of the patient with empathy; S for concluding with a needed summary.
Despite such a thoughtful template, miscommunication does not taint only diagnosis, as I.M. realized when she went on to confide about a more recent exchange. At her last meeting with her oncologist, they had discussed the sorry fact that the current cycle of chemotherapy had not inhibited tumor growth. The doctor gave her three choices: returning to the drug used in her first cycle, trying a clinical trial or “opting to do nothing.” Alarmed and shaken by this last proposal, she felt as if he were throwing up his hands or she had somehow been fired.
Because the members of our group had visited a hospice facility, we could assure her that she need never choose “opting to do nothing.” Even when patients decide that the struggle to combat cancer will be ineffective, they can gain access to palliative specialists who will alleviate pain and anxiety while rescuing them from pointlessly aggressive, time-consuming, expensive and debilitating treatments.
It cannot be easy for oncologists to deliver bad news so frequently, but it must be worse for them when they deliver bad news badly. The manners of patients erode as we become maddened by confusion and dread. Injurious words should never add insult to the injuries medical professionals witness and patients suffer daily.