Without being asked, the new patient confesses to anticipating a cancer diagnosis for almost a year, since first noticing a small, hard lump that is now the size of a grapefruit. “I didn't tell anyone because I didn't want to borrow trouble.”
Given the potential for tragic consequences of patient delays, urgency surrounds the need to develop interventions. For this column, I'm talking only about patients who know a symptom needs medical attention, yet they delay—not patients unaware of a symptom's significance. I'll begin by exploring two different issues: clinicians' emotional responses to patient delays and patients' emotions that lead to such delays.
If you're like the oncologists with whom I've discussed the introductory case, there's a good chance your response to similar scenarios has been a nonjudgmental, calm focus on providing good care. It is what it is, and you don't want the patient to feel bad about the delay.
Let's take a moment, though, to talk about any negative emotions you might experience in private—natural feelings of frustration, anger, or sadness. Obviously, you never ever ever let those personal feelings interfere with providing expert, compassionate care. But what do you do with them? For many of you, I suppose your negative feelings are fleeting, drowned out by your concentrated efforts toward optimizing the current situations.
I can't say the same for me. Since retiring and becoming actively involved in survivorship, I've felt frustrated and sad about those lost opportunities for earlier diagnoses. Until writing this piece, I've kept my thoughts and feelings to myself. Their only impact on my interactions with patients (I believe...I hope) has been a heightened sensitivity to clues that patients are distressed about the delay and need support, as discussed in “If Patients Feel Guilty” (OT 1/25/16 issue).
In safe settings, it's actually good if clinicians express distress about patient delays. Flashes of emotion reflect an enduring desire for each patient to achieve the best possible outcome. Like compressed coils, negative emotions can energize efforts to prevent such delays, instead of accepting them with equanimity as the way it is.
For interventions to get at the heart of the problem, we need to know why patients might delay for months, even though they'd check the correct answer on a quiz—(C) Call for an appointment today. Common factors include:
- fear (of recurrence, treatment, loss of control);
- preoccupation with work/home duties;
- physical and/or emotional exhaustion;
- desire to protect family from distress;
- concern about medical bills;
- magical thinking;
- mental illness;
- loss of will to live; and
- faith in alternative cures.
On the other side of the stethoscope, doing the right thing can be harder than it looks. During my first remission, I marveled at my angst when deciding if I should report symptoms I knew demanded medical attention. After years of teaching patients to report worrisome signs and symptoms, how could this be?
Each symptom triggered back and forth in my head about what to do. As high-stakes struggles go, logic collided with emotions. Fear of recurrence wrestled with fear of triggering a false alarm that wasted my doctors' time and unnecessarily worried my husband. Concerns about the toxicities of more treatment were overshadowed by dread of telling my children, “Mommy needs more treatment.” In the end, Dr. Harpham convinced Mommy Harpham with an argument that trumped everything: “What's the number one goal? To optimize the chance of a good outcome.”
The peace treaty that emerged included an action-oriented mantra for times of decisional conflict: “I'll do the right thing, no matter what I'm feeling.” Over time, reporting symptoms got easier, much the way habits get easier with practice. I learned to expect and accept emotional distress as a cost of striving toward my ultimate goal of optimal care in the setting of new symptoms. My mantra about doing the right thing shut down internal discussion by providing a shortcut to my final answer. Note: it never got easy. And I didn't always get it right.
Crutches help minimize patient delays, too, such as the pact I made with my husband to never keep secrets about signs or symptoms. That accountability has pushed me to act when irrationality threatened to get the better of me.
Perhaps what helped me most was my physicians' and nurses' responsiveness to every call, especially false alarms (OT 6/25/07 issue). I cannot overstate the healing power of clinicians' reassuring words: “You did the right thing to report this.” Validation makes it easier for patients to call the next time worrisome symptoms arise.
How will these ideas change your response to patients who report worrisome symptoms after waiting way too long? I hope they don't, and you respond as you always have, with expertise and compassion that help your patients move forward.
However, when you're off-duty, I hope you think about the delays. I hope you release frustration and sadness from the shackles of equanimity and channel that energy into systematic efforts to minimize patient delays, such as:
- Giving voice to the shared mission of optimizing the patient's care.
- Clarifying which signs and symptoms need medical attention.
- Highlighting common emotional obstacles to seeking care.
- Offering tips for overcoming those obstacles.
- Thanking patients who report symptoms.
- Reassuring patients that false alarms are better than missed opportunities to improve the outcome.
Will taking those steps exacerbate patients' anxiety between visits? Will your schedule explode with visits for benign bumps and aches? I don't think so. Anxious patients are anxious without your help. If anything, providing guidelines on which signs and symptoms demand attention may decrease visits for innocent changes that don't need evaluation.
If you do see a rise in patient visits, it's worth it if one of those patients—thanks to you—overcame the temptation to delay and now has a better prognosis. Minimizing patient delays is healing medicine.