The Empowered Patient

I just read about the ‘Empowered Patient’ website. I encourage you to check out this website for yourself.
Empowered.  That’s a word that is being use a lot today in many different areas of life. In our context, that of serious, even terminal illness, being empowered has meaning on many different levels.  As I discuss the concept of being empowered as a patient, please understand that I am including family members when situations dictate their participation in the health care of a loved one.

In my opinion, an empowered patient first of all is proactive. He or she is not satisfied or content to let  circumstance dictate how their health care needs are met.  This empowered person gets regular checkups, and shares with the doctor concerns before they become come critical.

An empowered patient is informed.  Just over a year ago I was diagnosed with Barrett’s Esophogus, a condition that often procedes esophageal cancer.  I knew something about this condition because my father had been diagnosed with it about two hears before he was diagnosed with, you guessed it, esophageal cancer.

Needless to say, I was most upset about my diagnosis.  I remember driving home, trying to see the road through teary eyes,  By the time I reached my house my emotions were under control and determination had set in.  I was determined to become a Barrett’s expert.  I walked straight to my computer and googled ‘Barrett’s esophagus’,  After reading a few websites I knew I didn’t have enough information about my diagnosis.  I needed the actual reports from the doctor who did my actual scope and the pathologist’s report as well.   I called my doctor’s office immediately, made another trip there and within 45 minutes I had those reports in my hands.  I was not content to wait till the next day to get that information.

Over the next couple of days I read, thought, and prayed.  You see, the doctor who did my scope wanted me to surgery as soon as possible to close my haital hernia.  Some of the information I read about that procedure said that was not a fix for Barrett’s esophogus.  Hmmmmmm.

I decided to go to a gastrointestinal specialist.  Within a week I was sitting in his office asking informed questions about my condition and prognosis.  To make a long story short, he did another scope and found no Barrett’s cells at all!!! Praise God.  I will of course have future scopes done, but for now, I am fine.

My point of this story is that because I gathered information, read, and asked question, I did not have stomach surgery that proved to be unnecessary.

An empowered patient is proactive and informed.  More to come.

Our Family’s Next Feeding Tube Experience

When Daddy was diagnosed with Esophageal Cancer, one of his doctors mentioned that at some point the cancer would close off Daddy’s esophagus, and he would be unable to eat.  At that point we would need to make a decision about whether or not to insert a feeding tube into Daddy’s stomach to keep him alive.

After Daddy made it through two rounds of chemo and it became evident that the cancer was still growing, we decided not to do any more chemo.  Because Daddy’s mind was still clear, I determined that  It was time to talk to him about the feeding tube.  I reminded him about the doctor’s comments several weeks earlier.  I told Daddy that he didn’t need to make a decision right then, but just think about what he wanted to do when the time came.

Daddy’s pastor came to see him on a regular basis, and we always looked forward to his visits.  Bro. Burtis was always very perceptive to Daddy’s moods and never stayed long unless he felt like Daddy wanted to talk.  During one particular visit, Daddy asked Bro. Burtis to pull up a chair which meant “I have some things on my mind, and need to talk to you”.

After Bro. Burtis was seated near Daddy’s bed, Daddy began to talk about the feeding tube dilemma, stating that though he wasn’t sure what to do, but felt like he would probably refuse it because he didn’t want to be just kept alive.  Daddy then asked Bro. Burtis to share his opinion of should be done.

Bro. Burtis so wisely and gently shared that flatly deciding to refuse it at this point was not wise, because there were really many aspects of the results of having or not having a feeding tube to take into account.  For example, if the cancer closed off his esophagus, but otherwise he was still feeling good and felt like he would have more time to live with a reasonable quality of life, the perhaps accepting the feeding tube would be a wise choice.  Hmmmmmmm.  I know Daddy had not thought of it in that respect and I hadn’t either.

As it turned out, we never had to make the decision because in the end Daddy had a stoke which ended his life.

From this experience I learned that refusing or accepting a feeding tube for myself or a precious loved one, needs to be based on several aspects of the situation.  If a person will have a reasonably good quality of life and be able to have pleasure from being with people, then perhaps a feeding tube is appropriate.  If that person wants a feeding tube, then their wishes should be granted.

If, on the other hand, that person is already past the point of knowing anyone, or is not conscious and will never be conscious, if that person is no more than a person lying in a bed, or if that person has expressed the desire to never have a feeding tube, no matter what, then I believe that inserting that tube is cruel.

One of the most important lessons I learned from this experience and from Bro. Burtis’ wisdom, was that this type of decision can not be made ahead of time in most cases.  It is best to make that decision and cross that bridge when you come to it.