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Seems Obvious To Me, Guess Not

Joann Wagner

A Patient's Perspective

When I was asked to think about writing something related to communication in my own cancer care, I thought, "What could I possibly say that would be worth anything?"  I mean, it would certainly not be a sentimental story.  My experience with cancer treatment and follow-up hasn't been a life-changing, beautiful-meaning-of-life-finding experience.  It has been extremely frustrating and even enraging at times.  The biggest source of my frustration (not the fear of having cancer) has revolved around (the poor quality of) communication with my healthcare providers.  Below are a few of my lessons learned and advice for providers from a patient's perspective. 

Don't Generalize (Instructions or Steps), Give Specifics, Proactively

Provide as much detail as possible about treatment options.  In writing would be great.   A general explanation like, "…then you'll have chemo, then radiation, then if everything looks good that should do it" just isn't sufficient.  OK, I see the benefit of having a general conversation like this one at a particular time and place, but please know that there are so many questions unanswered.  For example: How long will chemo last?  How often will I have to have it?  Where will it take place?  How will it be administered (IV vs. pill)?  How will it make me feel?  What kind of help will I need?  Are there any precautions I need to take?  Is there any preparation I will need to do?  OK - I'll stop here, but note that I have not yet even moved beyond "chemo".  Best bet, walk your patients (verbally) through the experience.  You may not be able to promise specifics, but saying "about 12 weeks if all goes as planned" is better than "we really won't know until we see how you're responding".  Patients will greatly appreciate the preparation. 

One of the first frustrating exchanges I recall having with my physician was when I realized I didn't have details.  I mean, prior to surgery we met and he said "after surgery you'll be put on replacement thyroid hormones.  And, we will have you go on a low iodine diet to prepare for radioactive iodine treatment followed by a full-body scan.  You'll have a follow-up scan 6 months later".  Well, surgery day was upon me, and I realized "I don't have a plan after surgery." 

So, I contacted my endocrinologist and he provided me with two options.  We made a detailed plan (finally, with several misunderstandings along the way), and I knew exactly what to expect.  But, in the back of my mind I kept wondering "If I hadn't contacted him then, when would he have informed me of a plan?"  It was only two weeks before surgery that we had a detailed plan laid out, although we had been planning for this for two months.  I believe the clinic visit we had prior to scheduling my last surgery was the most appropriate time and place to work these details out. 

Similar misunderstandings occurred when planning for my 6 month follow-up scan.  Here is a simplified version of my correspondence (via our health portal) with my provider:

Me: I'm confused as to why I have two appointments scheduled?

Dr: I have no idea why they would schedule two appointments.

Me: Oh, now that I look close, it says one appointment is for an injection, the other is for the scan.  I thought we said I would get another treatment only if the scan results were positive?  The appointment for the injection is scheduled first. 

Dr: The information you received is exactly correct.....in order to do the scan a LOW DOSE ISOTOPE injection (not a treatment dose) is given.  A timed scan of this dose is done several hours later[I'll note that it is actually several days later].  We did discuss your having a scan; an injection is an integral part of this whole procedure.  This injection for the diagnostic scan is hundreds of times lower than any treatment dose.  Again, the letter said nothing about a treatment, and it is not.

Me: OK, thanks.  We did discuss a scan.  But the low dose injection was not a part of that discussion; hence, my confusion.

Dr: [no response].

Pay Attention To Your Patient (The Whole Patient); Adequately Assess Needs

Far too often it seems providers get caught up with treating a disease or illness and ignore the fact that their patient is not a disease or illness.  Goals of treatment have to align.  You don't get to make decisions for me; your job is to advise and educate me to help me make informed decisions for myself.  Yes, a specialist's expertise is necessary in my treatment, but you may not realize that decisions you are making for me impact my life (not just the state of "living" vs. "dying").  My treatment decisions have implications for my family, friends and future plans; all of which NEED to be taken into consideration.  Ask your patient about their family life, their goals and dreams, and their struggles so you can align your treatment goals.  If goals are conflicting (e.g. for your health you need this treatment, but it will not allow you to XXX), the patient should be aware and be allowed to make a truly informed decision.  If you don't assess goals and needs, it likely will damage your relationship with your patient.  Or worse, it could hinder your patient's well-being. 

In my own experience, I was simply floored when two years after my surgery my endocrinologist said "Oh, you're planning to start a family?  You should have told me, we need to discuss this and likely will need to adjust your medication.  At your current level it may be very difficult to conceive."  WHAT?  Was he really clueless?  From the time I had my last biopsy to the time he called me with results my last name had changed (which he noted, and we discussed that I had JUST got married).  When discussing the radioactive iodine treatment I made a pretty big stink asking about safety of trying to conceive.  In fact, we had a very drawn out conversation after my follow-up scan as I was completely unaware that I would have to take a diagnostic dose of the radioactive iodine.  That certainly makes sense to me now, but since it was my first time I was a bit naïve, and my provider did not specifically tell me.  We had numerous conversations about how my hormone levels were impacting my cycle.  And finally, one day, two years later, he clued in.  I'm pretty sure I cried out of so much frustration.  And cried some more because I'm sure he has no idea how he has impacted my life, my husband's life, our family. 

I also had an experience with a close friend diagnosed with stage IV breast cancer who was clearly (in my eyes) at the end of her life.  She was a very strong and stubborn woman, and wanted to maintain her independence.  In my conversations with her I realized that her providers' method of assessing her status was to simply ask her "How are you doing?"  When she offered "Fine" or "Surviving" they just took that at face value.  I called and spoke with one of the nurses in her chemo unit to let them know about my growing concerns; she was falling more often (and lived alone), needed some help and care at home, and likely was unsafe to drive because of physical symptoms.  None of these would my friend admit to, but when her friends forced their help upon her she would whisper, "Thank you for driving me today.  I really am not steady on my feet".  I tell this story because the response from her providers was to hand her a couple of flyers of services and say "If you have questions let us know."  She needed someone to sit down with her, assess the need for supportive services (and help her see the need for them), explain the benefits, and arrange services.  She was never even offered hospice services (after three active years of treatment following the stage IV breast cancer diagnosis).  She died several weeks later, hospitalized following a fall at home.  I understand her passing was inevitable, but the quality of her time could have been drastically improved if her providers asked very direct questions about safety and her ability to care for herself.  She would not have lied if asked directly, but she was not going to volunteer a self-assessment of "need".  Patients are proud and want their independence.  Providers have the opportunity and responsibility to provide care and ensure their patients' safety.  

Don't Hold Back Information, Especially If Someone Is Asking For It

Sometimes providers don't offer all of the information they use in making their clinical assessment, they just inform patients of their assessment.  For some patients, this is probably fine.  But for others, it just leads to more questions down the line.  If a patient is asking questions, give them an answer.  Unanswered questions can lead to mistrust in the doctor-patient relationship.  Patients can handle more than you think, and in this day, medical information is available at everyone's fingertips; and patients are looking for it.  Wouldn't the information be better coming from you?  

I am still flabbergasted that my physician didn't just tell me what I wanted to know.  After all, it is my body and my health, is it not?  Adjustment of my thyroid hormones has not exactly gone so well; the plan keeps changing, sometimes without me knowing.  Understandably, the initial treatment was meant to not only replace hormones I could no longer produce, but also to suppress any future development of cancer (in case there were still some cells hanging around).  But, when the plan changed (I guess I no longer needed to be as suppressed as I was) I freaked out because my lab values were coming back outside of the range we had been targeting.  My endocrinologist seemed less than concerned - which REALLY concerned me!  After several rounds of this I asked him directly: "What is the range in which my TSH should fall?"  His response was to tell me that there are not any hard numbers that would cause concern.  The range is a range and levels fluctuate and can be appropriate even outside of that range.  He wouldn't tell me what the "range" was, and said "Now you're looking for a number again, and I don't want to give you one because it may cause you unnecessary concern."  But, I just couldn't get out of my head the thought that "at some point, you will see a lab value of some specific number that is concerning to you.  I just want to know what that is."  Is this really unreasonable?  I then told him how it made me feel that he wouldn't give me an answer.  I also noted that as knowledgeable as he might be, he is also human and could make a mistake.  Since we were referring to my health I wanted to be as aware as I could be of what to be, and not be, concerned about.  He still would not provide me the information.  I am onto my next endocrinologist now. 

Demonstrate Some Sense of Caring

I really don't know why some providers are in the field.  As a former practicing Social Worker, I understand burnout; which is why I no longer practice.  If you can't empathize and be sympathetic you really have NO place providing "care" to patients.  I don't think I have more to say on this point; it's really that simple. 

I had been referred to an endocrinologist after my gynecologist found a 4cm X 4cm nodule in the right side of my thyroid during my initial visit with her (which my primary care practitioner missed just a month before during a complete physical exam).  I had been seeing my endocrinologist for over a year when I inquired about other potential diagnostic procedures. I had already had one negative fine needle biopsy.  I explained to her that my sister had recently been diagnosed with thyroid cancer (obviously concerning to me), and that when they removed her multiple nodules, the ones that were cancerous were not even nodules they knew she had.  These cancerous nodules were smaller and behind the benign nodules they were aware existed.  I will never forget my endocrinologist's response to me.  She said "You know, we would have to cut off a lot of body parts to eliminate your risk of cancer!"  This was her way of saying that she did not recommend surgery for me.  And, she never addressed my question about other possible diagnostic procedures (a violation of the last point made above).  It was the last time I saw her!

Check for Patient Understanding

To me, this does not mean simply asking "Do you have any questions?"  That's too easy for both parties.  If you instead ask your patient what their understanding of the plan is, and have them reiterate it in their own words, you can check for any misunderstandings and re-educate if necessary.  Also, this gives the patient the opportunity to process the information a little bit differently and possibly arrive at a question that she didn't realize she had.  This might save everyone multiple phone calls and emails later trying to clarify information.  My providers have not done this, but if they had, it could have avoided multiple misunderstandings. 

Get to Know Your Patient

For closing thoughts, I'd just like to recommend that you assume that every one of your patients has had the same [bad] experiences as I have had (and trust me, I could continue on, but I thought this was long enough).  Know that you are going to have to learn what each patient needs and wants, and earn their trust.  I am not personally against all medical providers (despite some of my past interactions); in fact I have seen my favorite practitioner twice this week already.  She is my favorite because I trust the care she provides to me.  She has always been open with me, takes time to explain each procedure and every result, takes my opinions seriously, and has always acted diligently in my care.  I'll find my third endocrinologist, and likely a new primary care practitioner, but I'm keeping my gynecologist as long as I can!  

 

Joann Wagner

Research Operations Manager

MPCI

Written by CCRC at 10:58

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