Questions for doctors

Posted by: KLM on: May 31, 2011

• In: Daily life | Medical Info
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I’m going to share a conversation I just had, since I think it may be helpful to others.

“I spent all day every day managing hot flashes from Evista ( a bone density/ant-cancer drug). All day I need the air conditioner on, then off, then on again at higher level. I can only STAND a light weight cotton shirt of a certain feel. My husband despises this shirt since it is in tatters now. He is right, but it is the only thing I can bear to wear so I keep decent shirt near door to throw on when I’m around him. This is my pattern for the foreseeable future: Get clean clothes, take serious serious shower, very very clean, then in 5 min. I am breaking out into complete sweat.”

She is thinking about telephoning the doctor to see if anything can be done with the hot flashes.

Doctors are notorious for seeming to ignore our complaints, telling us to bear with it, until they identify a concrete signal that this is seriously impacting the quality of life. As patients, we don’t know what to say or how to describe the problem. It is harder, since most of us do attempt to ignore the side effects as much as we can. Dwelling on them, analyzing, only makes it worse.

For effective communication to take place, you need to find a way of transforming words like “bad”, “hurts”, “uncomfortable” into concrete, measurable terms.

This goes back to the old “Who, What, When, Where and How” we learned in school.

Before placing the phone call, spend at least a few days, preferably a week, keeping a diary of your experience on an hour to hour basis, or at least doing it four times a day – morning, afternoon, evening, night.

WHO: is obviously you, but you can keep a diary on someone else if you are the caregiver.
WHAT: define the symptoms that occur
WHEN: When did it start? About how long did it last
WHERE: The actual location should not matter, the important thing here is what were you doing when it started. This can give clues to work with – “it always happens when I’m walking, but never when I’m reading.”
HOW: This you need something concrete that you can discuss with the doctor documenting the magnitude of the problem. I’ve discussed pain scales recently, as an example of quantifying pain.  The same adjectives can work with any side effect.  Focus on how much it impacts your daily life and whether it forces you to change behaviors dramatically.

It is not easy to keep a good diary like this.  I have been making attempts with a pain diary this week, and have many half days of data where I never got back to the paper.  This means I was OK, or that I was in so much pain I did not care.   Attempt to fill in the missing parts as soon as you can.  After 24 hours, you will not be able to remember details very well.

This diary will help you as much as the doctor.  You can begin to see patterns in both triggers of problems and things that ease the discomfort.

When you talk to the doctor about side effects, you can then say “Every day I have 4-6 hot flashes.  Most are OK, but the ones at night wake me up and it is impossible to get back to sleep.”   This is something the doctor can work with.

Communication is not always easy.   When we make an effort to use language that is meaningful to the listener, we have a better chance of getting the answers we seek.

Resources:
The basic examples of a pain diary :
* *Simple Pain Diary: http://www.canadianpaincoalition.ca/media/pain_diary.pdf from Canadian Pain Coalition
* http://www.healthinaging.org/public_education/pain/my_pain_diary.pdf from Health in Aging

Most detailed approach to documenting pain. Same diary pages work  well with keeping track of side effects.
* Chronic Pain Notebook: http://www.painfoundation.org/learn/publications/target-notebook.html

Download a pamphlet discussing how to keep records and communicate your experiences to a doctor. Targeted at pain, but good for anything you want to discuss with a doctor. It’s an extremely useful tool when discussing levels of pain, response to treatment and improvements in functioning and side effects.
*Target Chronic Pain Notebook: http://www.painfoundation.org/learn/publications/files/TargetNotebook.pdf