by Charles S. Cleeland, PhD with Diana Lazzell
You’re reading this article in your physician’s waiting room, here for your regular clinic appointment. You’re not feeling well today – the pain has been getting worse, and the overwhelming fatigue is really getting you down. You think about mentioning these symptoms to your doctor, but you hesitate.
You hate to take up appointment time talking about symptoms when what you’re really concerned about is your cancer. You don’t want your healthcare providers to think you’re a complainer or that you’ve lost faith in their ability to take care of you. What if they prescribe even stronger drugs? You don’t want to go about in a mental fog. And what if you become addicted?
Your worries are right in line with studies that found people do not want to bother their treatment team, fear new medications, are concerned about taking potent painkillers, and believe talking about their symptoms may make the clinic staff less willing to treat their cancer.
Most doctors and nurses report that one of the greatest barriers to good symptom management is a person’s unwillingness to report his or her symptoms. This silence often contributes to inadequate symptom management. Your input is a must if you are to receive the proper care for your symptoms.
Because symptoms are what you experience, your healthcare providers can only know about your symptoms if you tell them. This puts you in the unique position of being the symptoms expert. Other people may not realize when or how much you hurt, that you’re exhausted and sleeping poorly, that you’ve lost your appetite, or that you’re feeling distressed.
Although family and close friends may sense something is wrong, even they cannot say exactly how you feel and how symptoms affect you. Healthcare providers – the very ones who could offer relief for many symptoms – may not recognize that you are having symptoms or how severe they are. To manage your symptoms effectively, you need to keep the healthcare staff informed about how you are feeling.
By using the following guidelines during your appointment, you can learn to effectively communicate how you feel to your doctor and work with him or her to better control your symptoms:
- Be prepared. Write down the symptoms you want to discuss with your healthcare providers as they occur. Bring the list with you to your appointment. Don’t be afraid to ask questions.
- Speak up. Discuss the severity of your symptoms using a 0-10 scale, with 10 being the most severe. Make sure your doctor understands the severity of your symptoms, because staff underestimation of symptom severity has been shown to be a primary reason for inadequate symptom management. Report new symptoms when they first occur. Describe each symptom: Where is it? When did it start? Does it come and go, or is it constant? What does it feel like? What relieves the symptom? What makes it worse? Tell your doctor whether your symptoms interfere with any of your daily functioning and activities, and how much they interfere.
- Tell your physician if you are dissatisfied with the treatment you are receiving. Things change. What worked a few weeks ago may not be working now. Talk about medication side effects you may be experiencing. In some cases, your doctor may be able to change your medication or make other adjustments that will be just as effective, but with fewer side effects. If you are dissatisfied with the management of your symptoms even after informing the team that the symptoms are not well controlled, you always have the option of requesting a different doctor or asking for a referral to a pain or symptom control specialist.
Dr. Charles Cleeland is a professor in the department of Symptom Research at The University of Texas M. D. Anderson Cancer Center in Houston, TX. He has been a leading researcher in the measurement and control of cancer-related symptoms for 30 years.
This article was published in Coping® with Cancer magazine, November/December 2008.