Abstract
She was in the hospital with malignant hypercalcemia secondary to widely metastatic breast cancer, metastases she did not yet know about. She had an MRI two days prior, but no one had told her the results.
I was consulted to help with pain management and to clarify goals of care.
I knocked on Denise's door, and a weak voice told me to come in. When I entered, Denise was lying in bed, barely able to lift her head from the pillow. Her body was skeletal, and her arms were the bruised color of cancer and chemotherapy. Intravenous lines dangled, as saline and morphine flowed into her veins. A breakfast tray sat untouched on the bedside table. The room smelled of sweat, sickness and sadness. I pulled a chair close to the bed, sat down and explained who I was and what I did.
She told me she was a widow, with her only sibling, a sister, recently deceased from breast cancer. She had been an accountant, a profession that is a stickler for details, yet Denise seemingly had no idea her cancer was now widely metastatic, or that her time was limited, even though she was extremely cachectic, was not eating, had developed severe pain and had such fatigue and wasting she could not get out of bed unassisted.
I asked what she knew about her disease. She told me she had breast cancer, that her calcium was high, and she was here to treat the calcium before resuming chemotherapy. I pried and poked with questions, but it became agonizingly clear that Denise did not know that the cancer was now planted in most of her spine, her right hip, her ribs, her right humerus and her liver and lungs, or even more important, that she was dying. She assumed since no one had told her the results of the MRI, everything must be okay.
Perhaps Denise was in denial. After all, we all have a little bit of denial, and the pull of denial can be so overwhelming that the truth becomes distorted. But that's not always bad. Denial can allow the return of a measure of control to a life so very out of control, and it can also allow time to absorb distressing information in a time frame comfortable for the patient. 1
But I wasn't sure denial was the whole basis of Denise's story. Perhaps if she knew the results of the MRI, that the cancer was spreading throughout her body and was hurriedly taking her life, she would elect to forgo further chemotherapy and instead go home to live out her remaining days with the help and support of hospice.
Although I was disheartened that no one had discussed the results of the MRI with her, I wasn't sure it would have made a difference. Still, I believe it should have been done. However, there were persuasive reasons for not telling Denise, at least right now, one being that her physician was concerned about her cognitive status with an elevated calcium level. But her mentation was now clear, and per nursing, had been for two days. The other was how emotionally devastating the results of the MRI could be, especially because Denise had no support system and had voiced intentions to continue aggressive care during the last visit with her oncologist just one week ago.
But there was another reason, and that relates to physicians themselves. Many have difficulty disclosing bad news, particularly when the news involves a life-threatening illness. 2 This even happens to physicians who see death on a daily basis. I think the main reason for this is that physicians have an unwavering desire to protect patients and to preserve hope, even though studies do not support the premise that bad news destroys hope. Moreover, I think they don't want patients to feel that they have given up on them.
But I also think physicians have difficulty delivering bad news because it can precipitate their own emotional and psychological distress that can last for several hours to several days. 3 So they conceal unpleasant and difficult information in an attempt to protect their own emotional well-being as much as the patient's. 4 In fact, previous studies have shown that the more serious and distressful the information, the less likely the physician is to truthfully disclose that information.5,6 And that's what happened with Denise's physician. He admitted postponing discussion of the MRI results because of his concerns for Denise, as well as the distress he felt.
But whatever the reason, not knowing critical information in a timely manner precludes any semblance of informed consent. And by the time one does know, it may be too late to positively affect treatment decisions, quality of life, or the course of dying. It may also be too late for patients and families to say I'm sorry, I forgive you, I love you and I'll miss you, words that encourage the healing of life's unsettled differences.
As physicians, we all too often forget the importance of not knowing, until we ourselves become patients. And when we do, everything changes. It's then that we begin to understand the fear and anxiety of not knowing. Is it cancer? Has the cancer spread? Am I dying? Will I get better? What did the MRI show? What did my blood tests show? How long will I live?
It's then that we also begin to understand the apprehension of waiting — waiting for laboratory tests and X-ray reports, waiting for doctors to visit, waiting for procedures to be done and waiting for biopsy results. Not knowing when these will happen, and not knowing what the results are, precipitate fear, a greater sense of helplessness and a growing lack of control. 7 And from my own experience with my dying wife some seven years ago, when the known was unknown, not knowing was worse than knowing, even when the outcome was unwanted.