Myeloma In Paradise: Is It Time To Fire Your Doctor?
Do you have the time to listen to me whine? Sorry, but I need to vent about the challenges of being terminally ill in America today. I am not sure that it is worse than in other countries. In fact, I am sure it is dramatically better than in most developing nations.
I am not a medical expert, only a patient who has also been a small business owner most of his life. As such, I am required to put my customer’s interests first or I will surely fail. It boils down to customer service – saying what I mean and doing what I say. If I don’t do what I say, my customers will soon lose faith in me and find somebody else who can be trusted.
I have made my living earning my clients’ trust and doing everything in my power to keep it. They know that when they give me a project to complete (I am a facilities project manager – I build offices), they can count on me to get it done with their best interest in mind.
Why can’t our medical providers do this?
Don’t get me wrong, not all of my experiences have been bad. In fact, my current local oncologist and his staff are as good as it gets at providing quality health care in a friendly manner that takes my personal needs into account. My appointments with them are generally on time, the reception staff greet me with a smile EVERY time I arrive, my doctor patiently listens to my concerns, and the facilities are kept clean and reasonably cheerful.
I have had too many negative experiences to count with other providers, but my local oncology team is definitely top notch.
But let me start at the beginning.
My myeloma was initially detected by a blood test ordered by an immunologist; she was the one who referred me to my first oncologist. This is not unusual. Most of us met our first oncologist through a referral from another doctor. We don’t choose them. It is entirely dependent upon the doctor who refers us.
As they say, you never get a second chance to make a first impression. That first oncologist blew it big time! His offices were crowded, old, and full of many very sick people.
I was terrified!!
Worse, the staff were unfriendly, uncaring, and obviously overwhelmed. Every appointment I had with this guy started with a minimum one hour wait past my appointment time.
The oncologist came highly recommended and seemed to have a good grasp of myeloma, but I really didn’t like him. He was very impersonal and didn’t seem to care about me as a patient – only my disease.
I was so confused! I was in shock over my diagnosis and the fact that I was facing a terminal disease. I didn’t like doctors in the first place and had avoided them as much as possible in the past. All of a sudden, I was faced with a guy to whom I was supposed to entrust my life, who obviously had the necessary medical skills to treat me, but who had the personality of a small plastic soap dish!
As is often the case nowadays, this oncologist was part of a consortium of doctors who had partnered to create a cancer treatment center. Unfortunately, the doctors at this center represent about 75 percent of the oncologists in the city of Honolulu. When I inquired with my primary care doctor and others around town about alternatives, I was told this doctor was excellent at his job and finding a different doctor would be difficult, since most of them work for the same center.
What should I do? Is it okay to quit the guy who is trying to save your life? That doesn’t make sense, does it?
Actually, it does.
Your myeloma is quite possibly the most personal problem you will ever face. When dealing with life or death, we willingly make ourselves as vulnerable as we ever will in order to give our physician the best chance at keeping us alive. Even a colonoscopy isn’t more invasive.
Not only are all of our internal organs available for inspection, but also our emotions and our feelings. All parts of our beings are a part of our treatment.
If you aren’t comfortable with the person you are asking to help you with this most personal fight, you may not be successful in its outcome.
For me, my oncologist must be a better fit personally than any other doctor. I am willing to give up technical prowess if necessary in order to achieve this personal connection. I need a doctor who understands my disease, but who also is willing to understand me. This combination is what will lead to my best treatment outcome.
This isn’t always true for other health problems. If I need open heart surgery, I would like to have a great surgeon – even if he’s kind of a jerk. Once he’s done cutting, he has pretty much achieved all he needed to achieve. The rest is up to me.
With myeloma, we are treating a disease that will most likely be with us for the rest of our lives. Our oncologists don’t just cut and run. They are with us the whole way. We shouldn’t settle for someone who doesn’t fit this role.
Furthermore, we shouldn’t settle for a poorly run medical office, center, or hospital. Let’s hold our health care providers to a higher standard of care. If something isn’t being done properly, respectfully point it out to the person in charge. If you don’t speak up, don’t expect things to change.
Here are the things I think we have a right to expect from our health care providers:
- Run on time. Obviously, an unexpected emergency may come up, but generally we should have our time respected as much as we respect the time of our physicians. I don’t think anybody should be concerned about a few minutes wait, but being an hour behind every day is a problem that needs to be addressed.
- Ensure your staff are polite. This should be so simple. Try to smile. Greet us when we arrive instead of pointing us to a list to sign. I understand that there may be rare situations where being polite can’t be a priority, but generally this should be the rule. If somebody finds this overly complicated, perhaps they should find a job where they don’t have to talk with people.
- Spruce up your facility a bit. By design, health care providers are dealing with sick people. Having a dreary, worn out facility sets the tone before we even see the doctor. This affects healing. A good cleaning and a coat of nicely colored paint doesn’t cost very much.
- Communicate electronically. We live in an era of amazing communications. Our medical history and test results should all be available online, and we should be able to ask our doctor a question via email. Our doctors are busy – we get that. So why shouldn’t we be able to send an email that they can answer when it is convenient for them? I am amazed when one office has to fax a barely readable printed copy of some test result to another office. This should all be done electronically.
In our professional lives, we would never be allowed to offer the substandard service that many patients are forced to endure from our health care providers. If this is your experience, maybe it’s time to find somebody better.
For me, I bit the bullet and searched for another oncologist who fits me well. I found a doctor who listens to and cares about me, who is very in tune with current myeloma treatment options, and who is a part of a well-run oncology center.
It was very satisfying for me to tell my original oncologist that I wouldn’t be back. Hopefully he will get the message and do what he can to improve the care he offers. Most likely he didn’t even notice that I did not come back.
Maybe you should consider firing your doctor, too.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. The title that he chose for his column, “Myeloma In Paradise,” is in reference to one of Hawaii's unofficial nicknames, Paradise.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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I am in a bit of a confusion ... shock. I was diagnosed yesterday, November 10, 2014. After reading article I am trying to fit my oncologist (previously my doctor). I am seeing my primary physician for a clarification as I was advised, and will probably go back to my designated oncologist. P.S. I am a retired dentist and have worked in my profession for 47+ years and am 90+ years at this awakening.
Thank you, M. Hirschfield B.A., D.D.S.
Tom,
What you wrote about your first oncologist could have been written by me. My guy didn't even have the you-know-what to give me the diagnosis after the bone marrow biopsy results. He sent his PA in, who had the personality of a frog. I came home and immediately called Cleveland Clinic Florida for a 2nd opinion. They got me in the next day and confirmed the diagnosis. I started chemo the following week. I have nothing but praise for that oncologist - Dr. James Hoffman - who even called me on Christmas Eve to give me blood work results. There is no reason for patients to have to put up with what we went through. Myeloma is scary to begin with. We have to have that connection with our oncologist.
Pat
Had a bad experience with my first local oncologist too. Thankfully my myeloma specialist is top notch and instructed my local as to my treatment. After 8 rounds of chemo I could no longer stomach the uncaring attitude and changed to a wonderful oncologist who works as a team with the specialist! I wish I would have had the courage to fire her earlier in my treatment because now I can see that I received substandard treatment.
Thanks for your article, I hope it encourages others to demand better treatment.
This hits home for me. I have been so stressed after my primary oncologist of five years moved to a big research hospital in a different city. I was so comfortable with this doctor and the office staff. I could travel by train or plane, but would prefer to stay local.
I was unable to move forward to find a new oncologist - mentally I was stuck. I didn't want to change doctors. In the past, I have had some great oncologists; calling me at home, even on weekends, returned emails and showed a human side. I also encountered robotic doctors; programmed what I was to do without any choices.
So recently I finally took a step to meet a new doctor that was recommended. The office staff was unfriendly to a point of anger towards me. She refused to make an appointment until all my records were "faxed" (no electronic or hard copies). The doctor would then make a decision whether to take me on as a patient. This is a notable research hospital - I guess science is their main focus. My internist decided to intervene on my behalf. I'm unable to make the call for an appointment. I was spoiled by my previous doctor and the office staff.
Luckily, I'm able to get my numbers checked from the oncologist group of my previous doctor. Unfortunately, I cannot receive treatment from this group. Right now, that's OK. My numbers are stable, so, I can continue for now as is. I do have choices.
Dr. Hirschfield, If you share your location, friends may be able to recommend a top doctor. You are in my prayers as you get answers and help.
Great article. I was diagnosed in 2007, out of the blue, but I live in Seattle, one of the best places in the country for cancer treatment, lucky for me. My assigned doctor has been great, but I faced a dilemma in 2012, when I decided to live half time in Seattle and half time in Southern California. While I had some recommendations from my insurance company, blindly calling offices was frustrating. I had some of the same responses; no treatment without faxing records. Why? I just want to meet and discuss my situation before I make any decisions. I finally found an oncologist through the University of California Irvine. The 2 doctors coordinate as necessary and I couldn't be happier. Luck of the draw.
Research and persistence is key. It's your body, your life! One of my nurse friends told me during my second transplant; you don't have to accept any treatment you're not comfortable with. I carry that advice with me now.
I like my wife's oncologist (she, too, has myltiple myeloma), but I'm often shocked at how 'fast' they meet with you.
"OK, here is the update. Ok? Ok, see you ..."
Sometimes we make up questions to ask, just to ensure he is paying attention and giving us his undivided attention.
But here is the BEST part: After Joyce's second transplant, we met with the doctor. Of course, he ran about 20 minutes late and kicked off the session with "OK, so what's going on?"
And we said "Uh, well ..." and tried to think of 1 or 2 things to share with him.
He just nodded "uh huh, uh huh, what else?"
And we said "Ah, well, why don't YOU tell US what is going on?"
And HE said, plain as day, "Well, you're in remission, and ..."
HOLY CRAP!
YOU MEAN YOU KNEW SHE WAS IN REMISSION AND WAITED TO TELL US?!
And he said it as plainly as "it's supposed to rain later" or "I ate a tuna sandwich."
As pleased as we were with the news, we didn't care for his delivery of something so important. We had been on the edge of our seat for 2 weeks, and he just barely remembered to tell us the news!
A very good article. Sounds like a lot of people feel the same as you.
Thanks, marvin
Aloha Manuel,
I am so sorry to hear about your diagnosis. Find a doc you are comfortable with and give yourself time for the shock to wear off. Congratulations on a long life and a very long career! No need to end it now just because you got MM. Just try to be as patient as you can and do the best you can with each day you have. This gets easier with time.
Best wishes and much aloha,
Tom
Aloha Jeff - Your horror story sounds familiar. I think we all have a few like that. I am very happy I looked for a new doc. If I was you I would definitely leave that joker in the rearview mirror.
Michael - I like that advice alot! "You don't have to accept any treatment you're not comfortable with." That is easy to forget.
Mary - You DO have choices. There are lots of examples here of good docs as well as bad ones.
If we don't hold our docs responsible, how will they ever get the message that they need to improve?
Good luck!
Tom
Great article thank you!!
In my Mom's case, she was content with her oncologist. I think she actually thought he was "cute" hahaaa. He was very nice, which goes a long way. But I wished he took his time with her a bit more. She is very complicated medically & it's easy for doctors to miss things with her as she doesn't like to complain. We didn't have any big problems with him, until he retired. Mom was scared. The new oncologist was pretty young. I can say that it was a blessing in disguise because I didn't realize just how mediocre her care actually was until her new oncologist took over and totally blew us away at every visit. She was indeed much younger, but wow is she advanced!! She is brilliant, doesn't miss a beat, remembers so many things, yet cautiously double checks herself. She is outstanding & the past 2 years have been so much better with her by our side.
Poor care from an oncologist and staff is not acceptable. But, average really shouldn't be either.
And I agree with Gigi, I hope Dr. Hirschfield can get the right oncologist to ease his mind. And I will keep you in my prayers, as well.
Bless you all who take the time to share. It helps us so much
Thomas,
I lucked out with my doctor. I was referred by my neurologist when he found the MM. I called that doctor when I had not heard back. I was told by the neurologist that they would call me in a couple of days. When I called, I was told that she had 19 new patients ahead of me and that she would call me when she could! She was so rude, I was scared, and to top it off, there were only 2 oncologists in the phone book. Since I keep copies of all my records (we are retired from the military and they loose things), I called the other doctor. Got an appointment in 2 days and now I'm in remission for 3 plus years! My oncologist sent me to another doctor who specialized in Multiple Myeloma for my transplant.
The first doctor heard about how his girl had treated me from my current doctor. He told me that she got fired because of that treatment I got over the phone. These two doctors are not in the same clinic, but in the same building. And the "know" each other.
Doctors DO want the best for us, but can't do it if they are unaware of the issues. So, if you feel something is not right, speak up. You are you're own best advocate. And we need good people taking care of us!