How can I get my father to tell the doctor how bad his pain is?

1 answer | Last updated: Dec 02, 2016
A fellow caregiver asked...

When I'm at home taking care of my father, he's in terrible pain much of the time. But I get the sense that at his oncology appointments, he's not telling the doctor how bad his pain is. I don't usually go to appointments with him. How can I make sure the oncologist understands the severity of my dad's cancer pain?

Expert Answers

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

You've got a long history of interacting with your father, which gives you an advantage over the doctor. You have the ability to understand what your dad's truly feeling, regardless of his ability to put it into words, whereas the doctor only knows what your dad tells him. This can present a problem in communication, when the doctor is prescribing treatment in relation to what your father's saying, not necessarily feeling.

When you're with your dad, be as observant as you can be, and take notes on what you observe. Also try to talk to your father about how he's feeling, and get him to put it into words. Then suggest that he needs to be equally direct with his doctor. Remind him that the doctor can only make diagnoses and treatment recommendations when he knows what's really going on.

Sometimes it helps to role-play a doctor's visit. You and your father can identify what questions to ask and what important information to relay. Practice how your dad's going to describe his symptoms.

Pain is very individual and can be difficult to describe. Begin by having your father point out exactly where it hurts, then guide him as he describes it, using questions like these:

  • When did the pain start and when does it happen? Does it occur every once in a while or continuously?
  • What does it feel like (aching, burning, sharpness, stabbing, throbbing)?
  • On a scale of 0 to 10, how bad is the pain? Think of 0 as being no pain and 10 as being "the worst pain you've ever had" or pain that is "paralyzing."
  • Does the pain change or move?
  • What makes it better or worse?
  • Do you have other symptoms with the pain, such as sweating or nausea?

Write down or memorize his answers so you'll be able to pass them along to the medical staff. If you don't attend appointments, ask your dad for permission to communicate via phone or e-mail with his doctor. If you have an idea of what might be causing the pain, pass those thoughts along to the doctor as well. Your insights as a caregiver can be valuable in finding the pain's source and its solution.

If, even after better communication, your oncologist or primary care physician is not getting your dad the relief he needs, ask for a referral to a pain management specialist.