The Empowered Patient, Part 4

In my opinion, an empowered patient is nicely assertive.  I have always believed in building positive relationships with healthcare professionals.  I want them to look forward to seeing me, never dreading my presence.  I want them to know that I am part of my health care team, and in no way their enemy.  I want the professionals who take care of me or my loved ones to feel comfortable with my suggestions and requests, never thinking that I am out to ‘get’ them in any way.

Please understand, however, that if I do have a concern that I think needs to be taken to a supervisor, be it nurse manager, or hospital administrator, I will not hesitate to do so. That is a given.

What I am saying in this post is that, I  believe much more is accomplished with health care professionals if we establish a positive working relationship as quickly as possible.  That foundation will then make possible the ‘give and take’ that is necessary during the treatment of illness.

Once again: Lung Cancer is No Match for God’s Healing Power

During surgery the doctors removed the lower lobe of Rayford’s right lung which contained the a malignant tumor.  They also did many biopsies which have all been clear of cancer cells.  At this point in time, Rayford will not need chemo or radiation!  We are all thrilled and praising God for his goodness. I talked to Rayford a couple of days ago and he is slowing getting his strength back, and looking forward to resuming his previous busy lifestyle, serving the Lord as he loves to do.  We are totally grateful for God’s care of Rayford.

Tony Snow: His Battle is Over, His Victory is Won

Tony Snow was a role model for how to live, how to work and how to die.

I first became aware of this interesting man when he would fill in for Rush Limbaugh. I enjoyed listening to his political perspective which became more authentic to me when I listened to him talk about his life and his family. He just seemed to be a very ‘real’ person, with no facade, no phoniness in his heart. I thought of him as a person who was exactly the same whether he was surrounded by important dignitaries or common folk. He was who he was.

One of my most vivid memories of Tony Snow was his discussion of the kitchen fire in their home that had occured late one night after everyone had gone to bed. I know he gave vivid descriptions of the events, but what stuck in my memory was his discussion of being questioned by the fire department investigators about the fire, because he had been the last one to bed, the last one in the kitchen that night. Tony talked about how it felt to be grilled and to be considered suspect in that fire. Of course, he was not at fault. That fire was one of life’s events that just happened. Again, his sharing this moment in his life with us, confirmed his authenticity in my mind.

Tony taught us how to die. As he lived out his life before us, his Colan cancer diagnosis, his treatment, his cancer return, and ultimately his death, we observed the grace, dignity, optimism and faith which characterized Tony’s life, also characterized his death.

Log on to this Christianity Today written by Tony Snow for an amazing perspective on cancer and it’s unexpected blessings.

Thank you, Father, for Tony Snow. Thank you for allowing us to learn from his life, his faith, and his death. Bless Ton’s family with your Presence and your Peace during this difficult time. In the name of our Savior, Amen.

I Want To Express My Appreciation…

It is humbling and gratifying to look at my blog statts.  You know, those numbers that tell you how many readers have visited your site, and realize those numbers represent real people, sitting at real computers and actually reading, some of you faithfully, the things I write.  I want to say thank you.  Thank you for reading.  Thank you for commenting. Thank you for sharing my blog with your fiends.  Thank you for praying when I share concerns.

If you are new to my blog, I say welcome.  I have a story which was the genesis of my writing for the public. Please read my story which is located in the side bar, because by reading it you will know my perspective and understand my heart when families find themselves walking down the cancer path with someone they love.

Keep on reading my posts, keep on commenting when things touch your heart and live, keep on sharing my blog with your friends and please, keep on praying as God continues to work in our lives, giving peace, strength, wisdom, and healing.

The Empowered Patient, Part 3

As I continue my discussion of what it means to be an empowered patient, please keep in mind that sometimes the patient is empowered because of the family members who are involved,  Sometimes an empowered patient requires empowered family members.

An empowered patient makes suggestions.  Again, that is easier said than done with some doctors.   However, if you see a test or procedure that needs to be done or repeated, it is in your best interest or the best interest of your family member to make that suggestion to your doctor, even if that doctor does not always appreciate them.  Just think about how much you might regret it, if you don’t.

Because I was so involved with my parent’s treatments, medication, and tests, I knew which tests had been done and had a good idea (because I had asked question) when they needed to be repeated. Because I was always polite, never condescending in my tone when I made sugges Dr. B took my suggestions well. Dr. A, not so much.  However, in my mind it didn’t matter.  My parent’s care was more important than my feelings, or the doctor’s feelings.

An Empowered Patient asks for things.  This especially applies for a hospitalized patient, but is also applicable in other situation, doctors offices, testing situation, etc.

When my grandmother was in the hospital this past fall, the doctor decided that a tube needed a tube put down her throat.  The nurses had tried to do it when Mom was first admitted, but were unsuccessful in getting the tube in place.  For the second attempt, her doctor decided to ask the radiologist to do the procedure, using a camera to guide the tube down her throat.

Because Mom had been in tremendous pain, and because, well, because she was 96, and because I’d couldn’t stand the thought of her going through that procedure alone, I went with her as she was transported to the radiology department.  I walked into that area as if I had been there many times, never leaving Mom’s side.  The technicians did not ask me to leave and I didn’t offer.  However, when the radiologist came in, I did ask to stay.  By then I already had the special apron on and had taken my place by my grandmother’s head and was gently stroking her hair.  I did everything I could to convey that I was not going to be a problem at all.  The radiologist gave me permission to stay and so I did.  This would never have happened if I had not been bold enough to ask, then Mom would have had to endure that procedure alone.  Sometimes you must be ‘nicely’ bold. (my daddy would be so proud).

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.

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.