Doctor Communication

It is important that we have a common understanding of what hospice care is before answering this question. Hospice provides care for a patient who has a terminal diagnosis, with expectation of a prognosis of 6 months or less, and is usually no longer seeking curative treatment. Hospice focuses on relieving symptoms and supporting patients and is provided in the home, in a residential setting, or in the hospital. Another way of looking at it, is that hospice care provides palliative care for those approaching the last stages of life. I find that the best first step in addressing discussions about hospice with patients and families is to first understand what they know about their underlying diagnosis, their treatment options and how their illness is impacting their quality of life. I want to also understand what is most important to a patient and family when the prognosis is limited. Once I know what a patient and family hope to achieve and what is most important to them I can best help to guide treatment and make use of hospice services to help maximize their quality of life and help them to achieve their goals.

Not sure why. I would ask him/her. Sometimes they may assume you already know.

I love this question too! Thank you!

During my post surgical complications, I knew I could not continue healing at my best in my current state of mind. I also knew that I could not change my surgeon and how he interacted with me. The only change I could create was in myself and how I chose to engage with him and his staff. With the help of author Caroline Myss, (Defy Gravity), I meditated and focused on reinventing my relationship with my surgeon (and my life). I surrendered to the situation and flipped my state of mind from one of fear and anger to love and trust. I genuinely fell in love with my surgeon. I had to in order to be authentic to my new path. I softened and relaxed ………,and he did too. He slowed down and got to know and care about me as a person. This was an amazing gift that I really did not appreciate the signifiacance of at first. Actally being a person that mattered rather than one of many patients was critical to my "survival" (primitively speaking).
Needless to say, my reconstruction surgery went very well and I am continueing to heal with full appreciation for my new life that seems to be brimming with grace and opportunities.

I was fortunate to have my chemotherapy up front, which allowed us to actually see the tumor respond and shrink......therefore also get any cells that may have escaped (the REAL Bad Guys). This also allowed me time to really explore my surgical options. I had a fabulous general surgeon and interviewed 3 plastic surgeons. I learned that a nipple sparing mastectomy might be an option, even though I was told by at least one surgeon that it was not an option. I subsequently learned that very few surgeons do this new proceedure. Anyway, I found out through a friend of a friend of a friend (litterally) that there was a great surgeon at Emory who did the nipple sparing proceedure. I met with him and he felt that I would be a good candidate (small breasted and the tumor was far enough away from the nipple). Also, he was an oncoplastic sugeon, meaning he would do the entire proceedure himself, mastectomy and reconstruction. This meant a more cohesive surgey and less time under anesthesia. I have to say, the before and after photos did make a difference to me as well. No visible scar and a natural nipple, not a tatoo. I feel so Blessed to have even had a CHOICE. I am Blessed :o) I was his 50th nipple sparing mastectomy.

The most difficult conversation I had was when I naively confronted my original doctor with the conflicting advice from my second-opinion doctor at another institution. How was I supposed to decide how to proceed when I had no medical background and two highly respected doctors were giving me contradictory recommendations? I begged my original doctor to talk directly with my second-opinion doctor and resolve the discrepancies. At the time, it seemed like a reasonable request, but it created a very awkward situation with both doctors' becoming annoyed with me. Eventually I resorted to a third-opinion doctor, who served as a kind of tie breaker.

My mother is 87 and yesterday we were at her docs. Now she was brought up to think of docs as "gods" and authority figures that are never to be argued with or questioned or even to converse normally with. The docs were doing them a favor by taking care of their medical concerns. I saw this attitude with her yesterday, nodding and smiling and agreeing with whatever the doc said. This is not how to have a conversation with a doc! Luckily, her doc questioned her more thoroughly to elicit the type of information she needed to address my mother's current medical condition.

Being diagnosed with and treated for cancer as Beth above mentioned, makes one more comfortable with docs and other medical personnel. Once diagnosed I insisted on a second opinion and received one. I must say that experience was eye-opening! I had never been treated so shoddily by any doc, young or old, male or female. He was AWFUL, patronizing, cloying, with an attitude of "I'll tell you, you will not question me". I high- tailed it out of there and ran back to my original oncologist. As with any professional, respect should be showed by the patient to the doc but also the other way around! The doc should also show the patient respect and if she/he does not, then find another doc! Good customer service is expected wherever you go for whatever service you need. Medical care is no different. You and/or your insurance company is paying the bill for your medical treatment. If you are not shown respect and treated professionally, find someplace else to go! If you went to get your car fixed and the service people had a bad attitude and treated you and your car inappropriately, wouldn't you not find another car repair shop? As the old saying goes, "(s)he who holds the dollar makes the rules". You or your insurance co. holds this particular dollar, so if your needs are not being met find someone who will meet ALL your medical needs, including the need for humanity and respect.

Providing patients with information and encouraging conversation and exchange of ideas and thoughts and treating them with kindness and empathy would go a long way to encouraging them to ask and question. That starts with the medical personnel other than the doc. Having a pleasant and caring person taking vitals and other things that have to be accomplished in a medical office goes a long way in making a patient feel comfortable enough to participate in their own treatment, recovery and healing. I think if there is more discussion about this matter the general public will eventually demand more than medical information from their medical personnel.

Hi Debbie,

You ask an excellent, important question. There are many clues that can indicate it's time to fire a doctor. Sometimes you know immediately that a doctor is not the right fit, but other times, it may take awhile. Here are some tell-tale signs that may indicate a doctor should be fired:

-- He/she doesn't return your phone calls in a timely manner (for me, this is within a day or two).
-- He/she comes to your appointment, armed with statistics printed from the Internet.
-- He/she is dismissive of your concerns.
-- Put out an emotional prompt, such as "I am scared." If the doctor is not compassionate and doesn't address your emotional needs immediately, this could be a sign he/she is not the right one for you.
-- He/she does not allow you to have a say in your own medical care.
-- He/she does not answer your questions in a way you can best understand the answers.
-- He/she interrupts you and/or scolds you, is rude, and is arrogant.
-- He/she contradicts him/herself and keeps changing his/her mind.
-- He/she doesn't listen to what you have to say.

These are just some indications that a firing is in order. I fired doctors who had a combination of several qualities. I have encountered doctors with all the aforementioned qualities. As upsetting as it is to let a doctor go, you have to make the decision to choose a doctor who is right for you.

Your surgeon or oncologist would be the best resources to explain your pathology report. It is helpful to obtain a copy of the final pathology report and write down the questions you have about the report prior to your appointment. This way you go into your appointment prepared to have a discussion with your healthcare provider.

Part of the discussion of treatment options includes the percentage of success each treatment modality offers for a specific type of breast cancer. In an academic medical center, the physician treating patents are also researchers. They have knowledge of cutting edge treatments, and will answer all questions to the patient’s satisfaction. Bringing a list of questions to your appointments and having a friend or family member available to takes notes can be very helpful.

Doctors recommend that one family member act as a conduit for information between the rest of the family and the medical team. This person can write down everyone’s questions and speak with the medical team at a convenient time. Don’t be afraid to ask your doctor to explain if you don’t understand the terminology they are using. If you are having trouble communicating with your loved one’s doctors, you may want to talk to a social worker or case manager. The hospital may have a social worker on staff or be able to recommend one to you.

To learn more about ICUs, check out our Prepared Patient Feature, "Cutting Through ICU Confusion," here: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue8.cfm

If you have symptoms that are worrisome of IBC or Paget's disease of the breast it is important that you have a skin/punch biopsy to rule out this diagnosis.
I would urge any woman who is experiencing symptoms to get a second opinion such as seeing another pcp or even going to a dermatologist. If your insurance does not require referrals make an appointment to see a breast specialist/surgeon. Do NOT ignore any symptoms because every person has a different severity in their presentation of IBC or Paget's disease of the breast.
Hope that helps.
Heather
www.mybreastcanceranswers.com

I wish that my physician (who is no longer my physician) had explained the relationship between steroids (the reason for pre-medicating with steroids) and the chemo drugs. I am the type of person that wants to know the reason behind everything. It is important to me to understand why I am taking a medication. I like to know as much as possible about the medication and the possible side effects. (I.e., I am probably a pain in the butt for a patient).



What I feel I missed out on was having an understanding about the purpose of the steroids (to allow my body to take the chemotherapy drugs without having an allergic response).


When I had my first chemo round I was told what doses of the steroids to take prior to my first infusion. I followed the directions carefully and exactly. I did pretty well with the Herceptin and not too bad with the Carboplatin. But, when I started getting Taxotere (Docetaxel) I began to experience pain in my chest and a lot of tightness in my chest. I also began to feel hot all over. Since it was my first infusion, I was being watched pretty closely for any reactions. My nurse slowed the rate of infusion and administered additional steroids (solumedrol was one of them). This improved my situation and I was able to complete the first chemo round.


My nurse (who was fabulous through all of my treatments) told me that because I had a reaction to Taxotere - I would need to have my doctor change the premedication doses prior to my next chemo round. I am sure she made note of this in my file as well. But, she told me to follow up with my doctor about it.


So, I did. I kept asking about the premedication dose, that I was told it needed to be different for the next chemo round. When I finally heard back (you will see why I fired my first oncologist) I was told not to take any pre-medications (other than the emend - anti-emetic - the morning of chemo). So, being the good patient I was (and sadly, not understanding what the steroids were used for) I followed the directions given by my doctor and did not take any steroids prior to my second chemo round.


My nurse administered steroids just prior to my infusion (as they had done before) but, I did not have the proper pre-medications (the steroid pre-medication dose should have been increased, not eliminated based upon my reaction to Taxotere during my first chemo round). I got through the Herceptin okay and also the Carboplatin. But, very quickly after Taxotere was administered, I went into anaphylactic shock and stopped breathing. It was horrifying.


It happened so fast. One second I was feeling okay, the next I felt that same pain coming on and heat and then very quickly I could no longer speak or breathe. I was in a semi-private room, with one other patient. No one else. The other patient was listening to music with ear phones and so I could not get her attention. But, incredibly, her daughter came back into the room (she had gone on a Starbucks run for her mom). And, even more luck, she just happened to be a chemo nurse as her profession. She saw me in distress and quickly got my amazing nurse who literally saved my life. They stopped the chemo fast, administered a lot of steroids and luckily I came out of it. I never saw people move so fast and work so fast. I am so incredibly grateful for the fact that my nurse was so very competent and talented. She truly saved my life.


So, I wish the reason for steroids had been explained to me. If it had, I would have known that decreasing the dose (to zero) the day preceding chemo was a mistake.


When I met with my oncologist (the one who i later fired) my first impression was that he felt I was taking up too much of his time and that my questions were annoying to him.


I also did not like the answers I was getting. I did not like the fact that he made me feel like my questions were somehow irritating to him and that he felt I should just trust him and not question him about why I would be taking one thing versus another. But, I really wanted to understand what I was going to go through.


As a result, I started seeing an oncologist out of pocket up at UCLA. She is amazing. After the anaphylactic shock incident, my insurance offered to pay for the oncologist of my choice (at UCLA) and allow me to continue treatment locally in Orange County under her supervision.


After that I felt prepared and informed about my treatment. I was one of those patients that seemed to react to everything. I had to have very slow chemo infusions as my body just wouldn't tolerate it. So I know that I was not/am not the typical patient with the typical reactions to drugs. But, I really wish I had been informed of the reason WHY I was taking the steroids. If I had, I would have realized that I needed an increase, not a decrease, in the steroid dose prior to the second chemo round. It would have been nice to have avoided the anaphylactic shock experience :)


Fortunately that is past. But, it taught me a huge lesson - to ask questions, even if your doctor doesn't seem to be in the mood for it that day. You are the only person in your body and the only person experiencing what is going on in your own body. You have to listen to that.


My current oncologist is excellent. She relies on me for information about my symptoms and she treats our relationship almost like it is a team effort (and, it truly is a team effort: patients have to cooperate, listen and ask questions and doctors need to listen to their patients and be responsive). I am fortunate now to have the right kind of doctor-patient relationship.


I am still struggling with Tamoxifen. I had a hard time adjusting to taking it. But, I feel that I was well informed about the drug and about other possible options (lupron and arimidex).


I hope this (very long winded) answer is helpful.


Incidentally, I found my pharmacist to be the most helpful when it came to explaining medications, interactions and side effects. I loved my pharmacist! She was so helpful to me!