Thursday, July 9, 2009

Patient Advocacy

On my June 26, 2009 blog entry I mentioned I felt compelled to share more with you about the visit with my oncologist. I said it would be my next entry. My apologies - it wasn't. But here it is now.

To give you some background, Dr. Allerton was the Oncologist I initially worked with. After he left, I was transferred to Dr. Broketta. Shortly after my first visit with Broketta, I was hospitalized for the embolism. The doctor on-call ended up being my current oncologist By the time I had been discharged from the hospital, I had seen my now, current doctor multiple times. For that reason, he asked me if he could take me on as his patient since he now had seen me more than Broketta. I agreed.

During my May visit, my doctor told me my post-treatment checkups would no longer need to be PET or CT scans. He said instead he would simply watch for markers in my blood work. I let him know the markers in my blood were never above normal even when my cancer was at its worst and would therefore not provide the information necessary to determine if the cancer returned. He said the markers were in fact higher than normal when I had cancer and would be sufficient. Since I knew I would see him again before the PET Scan was due, I chose to let it go and talk to him about it during my June visit.

During my June visit - accompanied by Daniela - I let my doctor know that all of the surgeons and oncologists I saw were clear there were not sufficient markers in my blood to use it as a guideline. He said it would then make most sense to do a CT Scan since I was a Stage II. Daniela and I asked why I would only receive CT scans and we both reminded him that I was not only a Stage II (T4), but the cancer had made contact with one of my lymph nodes which is why I was being treated as a Stage III. He then revisited my file and after reading multiple entries from Dr. Alleton and continued dialogue with the two of us, he declared that my post-treatment checkups must be PET scans due to my being a "Stage III" cancer patient.

My reason for making this post is NOT to criticize my doctor in any way - maybe the system, but not him. In the past, it may have been. However, I am very happy with him as my Oncologist. I appreciate the way he thinks and his willingness to revisit a conversation should I ask him to. Why I don't criticize him is because over the last two years I have yet to work with a doctor who in one way or another hasn't altered their diagnosis or treatment - in one way or another - following a conversation with Daniela and/or me. Now I'm not saying my doctors may not have eventually made these decisions on their own. I'll never know. But I will assume nothing.

What I am saying is that each one of us must advocate for ourselves and not simply let our doctors guide us independent of our input. I have experienced each of my various doctors revisit their decision making process(es) - again, to one degree or another - as a result of something said by Daniela or me.

It is my understanding that my oncologist has a window of fifteen minutes to meet with each patient. Then add on top of that, he started at the clinic less than a year ago. So, I would imagine most of the existing patients he picked up already had pretty descent size files. I also imagine it highly unlikely that he or any other other doctor, nurse in his position would have the time to fully review each patients file from front to back. Does that mean he's not doing his job? Perhaps inside the context of what any particular patient might expect. But I believe he is doing his job - the job he was hired to do by the clinic that hired him - hired him to do a job that requires him to provide 15 minute windows for each patient. And inside of that context I believe it is my job and the job of every patient to advocate for themselves and to pursue any and all concerns until 100% satisfied.

Daniela & I have done that from the beginning. There are times it has been very awkward and uncomfortable. And not necessarily as a result of anything my practitioners say. Sometimes the awkwardness is simply a result of what's going on in my mind - my concerns about offending or upsetting my practitioner. Yet it doesn't stop me because my practitioners must base their decisions on what they know. And Daniela & I make darn sure that what they know is everything that we know and we make sure they answer every question we have.

I should also add that I sometimes feel frustrated or disappointed when a physician seems to miss something until I mention it. A part of me wishes I could finally just rely on them to work without my constant fine-tooth-comb over-sight. And the reality is, now matter how meticulous my doctor is, I must continue to be hyper-vigilant in the oversight of my own care.

I recently watched an episode of Oprah during which, Dr. Oz stated that about 400 people die every day from medical error. That is equivalent to a jumbo jet crashing and every person on that plane dying every single day of the year. If that jumbo jet scenario were actually true, it would be front page news every day and the entire airline industry would come to a screeching halt. Yet it does happen every day in the medical industry. The number of deaths per year as a result of medical error exceeds the combination of deaths as a result of AIDS, car accidents and breast cancer combined. Their commitments to medicine are not commitments to perfection nor do they give us the right to expect it. We have every reason in the world to advocate for ourselves and our loved ones any time we are under the care of physicians.


  1. hi bert..i say it to pts & families all the are your best know your body better then anyone else..and youre paying the doctor to help and guide have to speak up & not let things go...
    this also happens when your kids hit school..i check in every now and then to see how you are doing..i am so glad that the cancer is gone ...kiss you wife and hug the kids...God bless...kari

  2. Bert, great post. All true. Not only don't our doctors have time to read our charts, but we have to provide a "new" medical history every time we see a new doctor; how likely is it that we are even giving them all the same history? I went to a new doctor yesterday, and their medical history form did not have enough room for me to list all of my surgeries and medical events, let alone to give a sufficient family medical history.

    We need electronic medical records. Our information should follow us wherever we go. This would eliminate a majority of medical errors, would reduce duplicate tests, and would provide our doctors with a searchable file, making it easier for them to verify our own understanding of our health.

    Anyway, I loved the post. You are spot-on.


  3. Hi Bert,
    Thanks for the great post. We all want to just rest at some point and let others take care of the details, and your post shows us why it's important to stay on task. If I had it to do over, I'd be a much more informed patient and a much bigger advocate for myself. Very wise words, my friend, and eloquently stated!

    I think of you often and I'm sending positive vibes your way. I hope your cardiologist offers you the relief you need!