Caregivers: The Best Defense: Five Steps to Being ProActive in Your Patient’s Care.

How many times have you noticed something you felt was unnecessary, unfair or just plain wrong, in terms of the care of your patient?

When you’re already exhausted, it’s easy to give in even though in your heart you want to fight like mad.  You simply don’t have the energy to face what seems like a sea of paperwork and stand up to an equally daunting herd of bureaucrats.  The secret is to be armed with information.

Here are five simple rules that will help you accumulate that information so that you can deal with stressful situations successfully.

  1.  Take notes.  Date them.  Note who the participants are.  At every meeting with a doctor, specialist or clinician, note down key terms and what is being said about them.  This applies not only to medical concerns but also to status definitions and treatment options.  I preferred to keep these notes in one notebook, so that I wasn’t forever searching for slips of paper to find the information.  This will help you feel more comfortable if it becomes necessary to challenge a medical decision later.

  2. Get copies.  Ask for any piece of paper generated about the condition of the patient. You may not get it, but you can ask for a copy.  I found doctors were usually willing to have an assistant photocopy documents for me. I even got ECG printouts when I asked for them.

  3. In our province (BC) you also have the right to a printout of any lab test results requested by your doctor.  However you must ask for the results to be given to you when you submit the requisition to the lab..The lab can give you a card with your name and the internet address where you can access your results, or you can have them mailed to you.

  4. Photocopy the original prescription requests.  I used to ask the pharmacists to copy the script I gave them.  This allowed me to compare the prescription bottle dosages to the original doctor’s orders.  It also allowed me to check against what I already had at home to recognize changes the doctor may have made.  In rare cases, it served to help me recognize (with the help of the pharmacist) that the prescription was either inaccurate or inadequate.  I used Costco Pharmacy, and in my opinion, if they will do these things, any full priced pharmacy should.

  5. Don’t back down. If you have gathered all the information and know you are right, don’t yield. Be calm, courteous but insistent.  Do your research. If you are lucky enough to have a nurse or doctor in the family discuss the issues with them.  They may put your mind at ease or indicate possible strategies for intervention. Then make phone calls. Write letters. But always maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands.  Use phrases like “It seems that this is the case,” as opposed to “You did this”.

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