The Empowered Patient, Part 2

The Empowered Patient, in my opinion, is a good listener.  Especially when a diagnosis is first given that is serious or terminal in nature.  Some doctors are very good at sharing information with their patients.  It is in our best interest to listen carefully.  Sometimes it is just important to know what a doctor hasn’t said as it is to know and understand what he has said.

It is my suggestion that you have someone with you at doctor’s appointments, especially in the beginning, when they are sharing test results and treatment plans.  There is no way that we can hear, understand and remember all the details likely to be shared.

An Empowered Patient asks questions.  With certain doctors that is easier said than done.

When both my parents were in the hospital on the oncology floor in rooms right next to each other, we had two different oncologists.  These who men were partners and covered for each other frequently.

One doctor, Dr. A was, and probably still is, known as the best cancer doctor in the area.  He was the leader, the pace setter among the other oncologists.  He was also a cancer patient, having an incurable but treatable form of cancer.  So many people sang his praises. Rightfully so.  Many people had their years of life extended because of his care.

As you can imagine Dr. A, was extremely busy, and was burdened with a very difficult medical practice.  He was very focused and serious.  He came on the floor and there was no chit chat.  He went right to work and the nurses better be ready.

Because my parent’s rooms were side by side, he could go to one first then the other.  He was totally focused on the patient in that room.  He quickly went through the charts, verbally gave instructions to the charge nurse who was with him, wrote more notes into the chart, said a few words to us and was gone to the next room.  Five minutes, max!

I quickly learned that if I had a question for Doctor A, I had to be prepared to interrupt him, either when he was writing or talking, because he was not going to pause long enough to hardly take a breath, much less to see if we had anything to ask.  So that’s what I did.  I would interrupt him.  Even though I tried to interrupt him in a polite way, it was obvious to me he didn’t like it.

However, he did answer my questions.  That, for me, at that time of crisis in my life, was what mattered.  Please understand. I am not saying that he was a bad doctor at all. He was just focused.

Doctor B was entirely different.  We learned several things about his personal life while he cared for my parents.  He didn’t mind visiting for a few moments. He came in with a smile and a joke or two.  He would actually pause and ask us if we had questions or concerns for him.  I always looked forward to the days when he would be making the rounds.

Both of these doctors are excellent doctors.  They are examples of doctors you and I have known and will know during times of medical need in our lives.  There will be doctors that are easy to communicate with and doctors who are not.  We must accept this as part of their personality and as part of the ‘package’.

Our challenge is to somehow be able to ask the questions we need to ask.  For a ‘Doctor A’ type, I suggest that you have your questions written down before your appointment.  I know that is not always possible, because often questions come to our minds during appointments, depending on what is being discussed and what decisions being made.  Additionally, I suggest you be prepared to interrupt – politely – if necessary, your ‘Doctor A’.  No, he may not like it, but he needs to know that you have questions and you want answers.

For a ‘Doctor B’, well, your challenge here is to not get sidetracked into side conversations to the point that you forget to ask questions!  Again, it is always a good idea to have your questions written down.

More to come about The Empowered Patient.

Everyone Has A Story

From the beginning of their illness till several years after their deaths and sometimes even now, their illness was a story that lived in my head.  It was a story that looked for opportunities to be told again and again.  It wasn’t that I intentionally told my story to everyone whether or not they wanted to hear it.  I really understand that some people did not want to hear the details of our crisis, and that was OK.

However, I found that when I was around someone who was interested and would listen, then I found myself starting at the beginning of the story and unable to stop until I reached the end.  It was like a faucet that I couldn’t shut off.

I had never before experienced this compulsion.  This desire, this need to share my story about my parents from beginning to end over and over again, in the same way, saying the same things to anyone who will listen.

After talking to families of patients on the oncology floor when my parents were hospitalized, I realized that I was not alone.  Every family had a story and time after time I listened to their stories from beginning to the point their family member was in their treatment or recovery at that time.

I have a precious friend who one day shared with me the story of her mother’s passing away at least fifteen years ago.  It took her 30 minutes to tell me the story, but once again she did not stop, could not stop until she got to the end.

You know, I really think we have a need to ‘pick up’ the emotions surrounding our story, feel them once again as we talk, and then release them to the back of our mind for a while…….  I believe this to be a good thing.  As long as we understand that not everyone wants to hear everything and most people don’t want to hear it multiple times.  We must, of course, be considerate of them.

This ‘story-telling realization’ helped me understand myself and my need to talk, talk, and talk some more about my family’s cancer story, but I also began to be understanding when others had a need to talk, talk, and talk some more about their family’s story.  We all have one or one day will have one, you know.