Candid to the Bitter End: Indiscriminate Disclosures

A 65-year-old father of 6 was diagnosed with urothelial (transitional cell) carcinoma of the urinary bladder. He was a past smoker (46 pack-years) with hypertension, dyslipidemia, and a remote history of myocardial infarction. Disease was T1N0 (stage I) and treated by transurethral resection and intravesical therapy. A second-look operation and imaging revealed no evidence of disease. One year later right loin pain developed, and computed tomography revealed right hydroureter and minimal hydronephrosis without discernible cause. Results on cystoscopy were normal, but magnetic resonance imaging suggested fullness of the right ureteral outlet. Serum creatinine increased (2.0 mg/dL), ureteral infiltration by transitional cell carcinoma was demonstrated, and nephrostomy was performed with ureteropelvic junction stent placement, creatinine normalization, and nephrostomy removal. However, he was soon readmitted with recurrent vomiting, and retroperitoneal involvement, bilateral ureteral obstruction, and creatinine 3.7 mg/dL were found. After drainage he was referred to a tertiary care center and left us very sick but hopeful. On the third hospital day he was suddenly and bluntly told by a physician, who had seen him once, that a team of oncologists, urologists, and radiologists had reviewed his data, that he had extensive unresponsive disease, and that nothing could be done. He listened in silence. A few hours later a blood pressure of 250/115 was recorded, and atherothrombotic hemiplegia developed. He was sent back to the referring hospital, where we found a broken man.

A 69-year-old practicing lawyer was admitted after acute onset of severe vertigo associated with nausea, vomiting, and sweating. She was a past smoker and was diagnosed with diabetes mellitus, dyslipidemia, and hypertension 8 years prior, both well-controlled. Examination showed unilateral horizontal nystagmus and gait instability with neither hearing loss nor other neurologic signs. Head computerized tomography revealed generalized brain atrophy. Acute vestibular neuronitis was diagnosed, and she gradually made full recovery. However, although she did not ask, the neuroimaging findings were described by the attending physician and featured among the International Classification of Diseases, Ninth Revision coded diagnoses at the head of the discharge summary (code 331.9) handed to her. From then on, every minor forgetfulness was taken by her to signify creeping dementia. Soon she stopped working and became withdrawn and depressed, seldom going out or meeting her friends. Explanations, favorable second opinion, encouragement, and treatment failed to bring about an improvement.

In a hurry to comply with the ethical paradigm of the patient’s autonomy and right to know, physicians’ beneficence may sometimes be forgotten. Patient 1 was aware of the diagnosis and the spread of cancer obstructing drainage of both kidneys. At the same time, however, he had some hope, and even if self-deception was involved, it served a purpose and had a positive role, helping to maintain a fragile balance essential to the quality of his remaining lifespan.1 The price of instantaneously extinguishing hope by following protocol without heeding the patient’s feelings may be heavy, although the evidence is mostly anecdotal.2 Here we had an unusually striking example of a mind–body response that seems intimately and pathophysiologically linked—an emotionally triggered hypertensive emergency and a devastating cerebrovascular accident.3

At other times, it is “only” the quality of life that deteriorates irrevocably (patient 2). “Incidental” imaging information not amenable to treatment was provided to the patient, although she did not ask for it and although its clinical significance remains uncertain and highly variable.4 The patient, who was admitted with a benign self-limited condition and who made a full recovery, left the hospital convinced that she is doomed to become afflicted with devastating dementia very soon. Her life changed irrevocably. The physician’s words had in fact become for her a self-fulfilling prophecy. Indeed, negative information provided by the physician (eg, about possible adverse effects of drugs) may in itself affect outcomes and induce adverse effects that would not have occurred without this information, through expectancy mechanisms (so called “nocebo effects”).5

Without compromising our basic obligation to be truthful to our patients and their families, a more gradual and gentle approach, taking into account the potential impact of the information from the patient’s point of view, may be the better option. Even going as far as suggesting a trial of treatment, acknowledging that its chances to alter anything are very slim, might allow the patient and family time to adjust and come to grips with the grim reality (patient 1). Downplaying the neuroimaging finding of brain atrophy while stressing the absence of focal lesions, for example (patient 2), might have been far more considerate of the patient’s best interests. This approach may have to be frequently considered nowadays, when sophisticated imaging and laboratory tests reveal countless “incidental” findings, from cerebral changes through minor pulmonary nodules to the detection of autoantibodies in asymptomatic patients. Not all patients necessarily want to know everything about their prognosis or about future implications that may never materialize. A substantial minority of patients (up to 20%, according to several studies) prefers to remain ignorant of “hopeless” conditions6 and may find the uncertainty involved in some findings as a cause of intolerable anxiety. Even among patients who express a desire to receive as much information as possible about their illness, there is little evidence to support that they actually implement this desire in encounters with their physicians. Physicians seem well aware of this wish for the confinement of dire news, and 49% (of 710 oncologists studied) express their reluctance in providing “uninhibited” information of their own initiative.7 Moreover, a quarter of physicians were uncertain whether they would like to be told of their own prognosis were they diagnosed with advanced cancer.

Thus, the prevailing policy of absolute disclosure to each and every patient needs to be individualized and patient-tailored like any other medical decision, because its indiscriminate, undiscerning application may have prolonged deleterious effects on some patients. These adverse effects of “total” unselective truth disclosure may be prevented by tailoring information to patients’ wishes and keeping in mind the immense value of hope in medical care. Patient-centered care mandates taking heed of the patient’s values and preferences. When these include not wishing to know the “whole” truth, we need to be sensitive enough to discern it and use our best judgment to provide care without extinguishing every remnant of hope (patient 1) or supplying potentially harmful but uncertain and unsolicited information (patient 2). Thus, physicians should be cognizant of the fact that too much information of ominous or uncertain prognostic significance may be a double-edged sword for quite a few patients. Rather than unwavering “total” disclosure, probing patients’ preferences first1, 6 will allow for true patient-centered sensitive disclosures of diagnostic and prognostic information. More information may translate into lesser-quality care for some patients.