Patient delays worsen the prognosis of certain diseases, sometimes with tragic outcomes. In "Minimizing Patient Delays" (OT April 10, 2016), I made the case for proactively helping patients overcome emotional obstacles to reporting symptoms. Here's a handout to supplement your efforts to minimize patient delays. Feel free to edit it or use, as is.
Minimizing Delays
Dear Patient,
We're on a shared mission to achieve the best outcome. One key step is evaluating warning signs and symptoms in a timely fashion. Your job is to report them. Our job is to assess the best way to proceed.
Your job can be harder than it looks. Emotions often get in the way. This handout will help us work together, so emotions don't keep you from receiving timely medical care.
What are warning signs and symptoms?
These are objective or subjective changes-such as new pain, shortness of breath, fever or sudden weakness-that signal the possibility of serious disease that needs medical attention.
Why are we concerned about delays reporting warning signs?
Your prognosis is better if we diagnose certain cancers or complications of treatment soon after the problem begins than if diagnosed later. Also, we may be able to use milder therapies than if the disease has time to progress.
How quickly do warning signs need to be reported?
We will provide guidelines for which specific symptoms require immediate medical attention, which can wait until our office is open, and which can wait until your routine follow-up. It's better to be safe than sorry. If ever in doubt about a symptom, report it without delay!
How can fear cause delays?
Fear causes some patients to rush to the doctor for every little ache and bump. In contrast, fear causes others to avoid the doctor. Their fear (for example, of recurrent or progressive cancer, diagnostic tests, treatments or sense of loss of control) may cause them to avoid finding out what's wrong, downplaying warning signs with "Oh, it's nothing."
Fear is normal. And fear is okay as long it doesn't keep you from taking action. As Franklin Roosevelt said, the only thing we have to fear is fear itself.
What if you can't deal with more tests and treatments now?
If preoccupied with daily responsibilities, you may feel you don't have time to deal with medical issues. If worn out from past or ongoing treatments, you may feel unable to handle any more tests, upsetting news, or treatments. Fact: There is no good time for a medical problem. By reporting warning signs without delay, you decrease the chance of small problems becoming big ones.
What if you're worried about the added stress on loved ones? Or more medical bills?
Instinct drives us to protect our loved ones. If warning signs develop, the instinct to protect loved ones doesn't serve you well if it keeps you from timely evaluations. Remember: You are not adding stress; the warning sign added stress. You minimize distress for everyone by taking care of problems quickly.
What if you want to try alternative cures first?
Believers in alternative cures use persuasive stories to encourage patients to try their therapies. If you have an illness that requires medical intervention, taking alternative treatment feels like you are doing something positive, which makes you feel good. But alternative therapies harm you if they delay your receiving needed therapies proven to help.
What is magical thinking?
This is a thought process based on a belief that thinking, wishing or doing something makes it happen when, in fact, there is no connection. Normal healthy adults have times of magical thinking, such as "It's raining because I planned a picnic." As a patient, magical thinking is dangerous if it keeps you from getting good care. For example, "I won't call the doctor, because I don't want to borrow trouble" or "If I don't call the doctor, my symptoms aren't a real problem."
What if you don't want to trigger an evaluation for what turns out to be a false alarm?
False alarms-i.e., worrisome symptoms that, in fact, are caused by something minor-are part of survivorship. They happen because nobody can predict which warning signs will turn out to be nothing. Don't let a false alarm lead you to delay if, tomorrow, you develop warning signs. Instead let it make reporting symptoms easier by reminding you that worrisome diagnoses are only possibilities. Maybe you'll be celebrating again.
What if you know all this and still find it difficult to call?
If warning signs develop, keep your focus on your number one goal: to optimize your chance of the best outcome. Expect to feel mixed emotions. Repeat the mantra, "I'll do the right thing, whatever I'm feeling."
Make a pact with someone to always call if you develop worrisome symptoms. That accountability helps you respond in healthy ways to symptoms and get the support you might need.
What if we tell you over the phone it's probably nothing, but you sense it's more than nothing?
Tell us, "I need to be seen." You are our eyes and ears. You know your body best. Help us play it safe so we never look back with regret.
If you are already anxious, will this emphasis on reporting symptoms make you more anxious?
Probably not. You'll feel anxious with or without our encouragement. If anything, our insistence that it's your job to call with warning signs should calm you and give you confidence. You'll bypass the mix of emotions that accompany deciding what to do. The good news is that anxiety usually fades over time. Please tell us if you feel anxious so we can discuss resources to help speed your adjustment and ease the anxiety.
What now?
Make sure you understand which signs and symptoms warrant a call. If you call, please report not only your symptoms, but also your worries. For example, "I'm scared you're going to find something terrible," "I'm worried I'm wasting your time with a false alarm" or "I'm worried about the added medical bills." Don't ever hesitate to tell us how we can make it easier for you to narrow the gap between knowing what to do and doing it, today, tomorrow, and every day.