The follow-up phone call from the hematologist came early on a Saturday morning, which boded badly for me. The day before, I had been discharged from the hospital after a four-day admission for fever and red blood cell aplasia. The working diagnosis at discharge had been “probable mononucleosis-like viral syndrome pending the results of a bone marrow biopsy.” But getting a wake-up call over the weekend could only mean one thing: I had something worse.
The hematologist had barely introduced himself before telling me that I had a “life-threatening” blood cancer (acute lymphoblastic leukemia; ALL), that I had a prognosis of “50-50” at five years, and that I needed to get readmitted to the hospital on an “emergent basis” to begin induction chemotherapy.
I was left speechless; I can’t even tell you how the phone call ended. To this day, I’m still suffering the emotional repercussions from this calamitous physician encounter.
As physician assistants and nurse practitioners, we will someday find ourselves in the position of having to deliver a grim diagnosis to patients like me. To help you avoid the mistakes my hematologist made, I’ve developed a set of practical guidelines, using the mnemonic device “P-PAUSE,” to mitigate the immediate psychological impact of such a diagnosis and its potentially devastating aftermath.
Prepare your schedule. Presenting a serious diagnosis to a patient can’t be done with any degree of sensitivity under rushed circumstances. Nothing could be worse for the patient than to sense that his provider is distracted or would rather be somewhere else. That’s why it is important to set aside a reasonable block of time to talk to the patient, which may mean that you have to rearrange other appointments or ask for assistance from your colleagues to answer pages.
Prepare your preface. Assigning adjectives such as “bad” or “unfortunate” to test results comes across as judgmental, which can, in turn, make the patient feel bad or unfortunate, too. Remaining objective and direct is crucial here. Avoid prefaces such as “Regrettably” or “I’m afraid I have bad news” or (worst of all) “You failed the test.” Instead, use an impartial phrase like “I have the results of your test and they show the following …, which means that it is [the diagnosis].” But while your words may be neutral, you can use your body language to impart sympathy for and alliance with the patient. Make eye contact, move your chair closer to her, or lean your body in a bit. In this way, you make yourself available to the patient.
Avoid emotional extremes. It’s important to show a certain degree of emotion to your patient, as doing so conveys engagement and genuine caring. Indeed, a strong empathetic response from a clinician is an invaluable tool that we can use to attenuate a patient’s anxiety. Being detached or overly stoic can suggest indifference or, even worse, condescension. However, it’s just as important to temper your response according to the personality of the patient. Under certain circumstances, it might be perfectly acceptable for you to feel as devastated by the bad news as the patient is, and even to cry with her. But you wouldn’t want to do that if that’s not where the patient is on the emotional spectrum. In fact, immediate acceptance of a catastrophic diagnosis is not a realistic expectation, and patients may display varying degrees of denial or even disinterest. As a general rule, it’s best to avoid emotional extremes.
Use caution when discussing the prognosis. There is value in knowing a patient’s prognosis for a given disease, because it guides treatment decisions. (Note: Discussing prognosis within the context of hospice referrals or end-of-life care is beyond the scope of this article.) However, we must appreciate two things here: that prognosis statistics apply only to large groups of people and that the same disease can behave differently in different patients. Making this clear up front reflects an appreciation of your patient’s uniqueness; it can also instill hope in seemingly dire cases where aggressive treatment is necessary but a positive outcome is uncertain. (Many of us have seen firsthand what I refer to as the “living-out-my-prognosis phenomenon,” in which patients seem to die around their assigned “due dates.”)
Furthermore, handing down a prognosis right away may not be appropriate, especially if your patient is having a difficult time accepting the news. Here again, knowing the personality of your patient is important.
Secrets: Don’t keep any. Overt withholding of information from a patient can engender fear and confusion, especially if questions are deflected or dismissed. A common slip for PAs in particular is the “partial reveal”: The results are back, but the patient must wait until the supervising physician is available for a full explanation. In this situation, it’s best that you to keep the results to yourself until you’re ready to explicate them in a comprehensive manner.
Explain the options (and have at least three). Communicating to your patient that he has treatment options will give him a sense of control as he faces what could be the biggest challenge of his life. Providing options also implies a partnership with your patient. In some situations, there may be only one definitive treatment, but you may be able to finesse its timing, location, and use of adjuvant therapies in order to give him some decision-making ability.
In 2005, I was told by a physician that I was a candidate for palliative care only. Today, I am happy to tell you that my ALL is in remission. But over the years, I have personally experienced the pitfalls described in this article, which can be avoided using the guidelines presented here.
Hippocrates once said, “Healing is a matter of time, but sometimes also a matter of opportunity.” When we find ourselves in the position of having to deliver bad news to our patients, we can indeed seize the moment as a potent opportunity to provide comfort and a sense of empowerment as they confront a serious and potentially fatal illness.