Speaking to Medical Staff for Your Loved One

My Mom died of pancreatic cancer. In her last few years, I helped care for her (along with my sisters and my Dad). As she became weaker, it was exhausting for her to communicate with medical staff. Different doctors would ask the same things over and over. Trying to be polite and also attempting to make sure each doctor had the information they needed to effectively treat her, she tried to answer the best she could. But it was difficult and exasperating. Breathing and living were difficult some days. Adding repeating yourself over and over was beyond difficult and it seemed a waste of energy.

Because I spent so much time with her I had a decent idea of what the answers were but I didn’t want to speak for her and get it wrong. Eventually, a system evolved though.

Doctors would ask questions and I would answer for her but let them know if I got it wrong, she would correct me. I paused occasionally and turned to her to ask if she agreed. At that point, all it took was a quick nod to confirm. It was much less taxing of her energy and because I had the energy to expand, the doctors got a much more comprehensive answer.

Other tactics to ensure doctors got the answers they needed were:

• Carry our own copy of her medical history for reference
• Have a quick reference sheet to hand to the doctors they could keep that included current drugs, brief history, and latest status
• Always ask for a copy of the medical records when we left so we could keep a complete history (did you know that you can ask for a cd for yourself each time you get an MRI or CAT scan?)
• Utilize the help of nursing staff as they sometimes have more time and are more willing to give info than physicians — make friends with them!
• Be nice. This seems like such a common sense thing but medical staff are frequently verbally abused because they are facing frustrated caregivers and patients. Being nice will get you much further than screaming.

My Mom called me her bulldog and meant it in the most complimentary way. I spoke for her and made sure that she got the care she needed. Its true that the squeaky wheel gets the grease and when you are sick its hard to be squeaky.