STAND UP & BE HEARD. BUT DON'T HATE YOUR DOCTOR.

[Barree]

I came across this article today and felt it worth re-posting. The relationship with our Medical practitioners can have an enormous impact on the sucess of our treatments. We have heard it all before but I still think it's worth a read.

 

Stand up and be Heard. But don’t hate your Doctor.
Editor's Note: This article originally appeared on KevinMD.com.

“I don’t know.”

That is an answer patients hate to hear. It is also an answer doctors hate to utter, and in truth, many of us fail to say those words when it would be proper to say them. Doctors spent long hours over many years of training, sacrificing personal time and family life. Most of us are perfectionists, and not knowing a medical diagnosis often feels like failure. Perhaps, the better answer is, “I don’t know, but I am going to help you find out.”

As doctors, we don’t know everything. If you come across one who does, they are lying. Unfortunately, when we as doctors fail to admit when we don’t know the answers, we cause great harm to our patients. We become the doctor patients don’t trust, and the doctors who they think don’t listen and care. We may care a great deal, but it won’t matter if our patients don’t think we have their best interests at heart or are helping them uncover what is the cause of their symptoms or fears. Patients may avoid seeking care when they need it or get frustrated and not seek any further help because they feel their doctor has no clue what is wrong with them.

Being a family doctor, I am expected to know a lot across the whole lifespan and across every organ system. But also, being a family doc, the wide range of diseases I have seen makes me realize there is a whole realm of medical information out there that I don’t know. It is my responsibility to help the patient by either diagnosing and treating them myself, sending them to the specialist who may help them when I can’t, and give them resources to search on their own outside the limited time we spend together in the exam room.

Patients do not get upset when I tell them “I don’t know” (except for one guy but that is a whole other article) because they know I will help them find the answer. Yes, it is upsetting when you don’t feel well, and all the blood results come back normal. Medicine is not always an exact science, and often I feel more like a sleuth than a clinician. But, the fact that I, nor the test results, reveal the cause of your symptoms doesn’t mean that there is not an underlying problem. And here is where I think many doctors fail to address their patient concerns: they tell them there is nothing wrong. Yes, there very well is! The patient doesn’t feel well, and they are scared that there is something wrong with them. It is our responsibility to help them find the answer and to feel better. If we give up on the patient, what are they supposed to do?

In our current health scape, medical systems are getting larger and larger, and patients are getting lost in the system. Not only do they have to open themselves up to disclosing sometimes embarrassing details, but they also have to know what are deductibles, prior-authorizations, formularies, out-of-network services, and on and on. Many times there is no one to help them even begin to navigate the system. And once they do, they often feel like they are on the assembly line at Amazon and no one is listening or cares. Is anyone out there that can help, they are left to wonder.

Patient advocacy is a keyword these days, and there are many groups out there that advocate for patients. They may be very popular and easy to find, or they may be more elusive. Advocacy is especially important for rare disease patients who often take years to diagnose only to find there is no treatment available, or it is just too unaffordable. While these groups do a great job raising awareness and advocating for research and the need for new therapies, every patient must be their own advocate as well.

How can a patient advocate for himself/herself?

Educate yourself. Know what your insurance coverage means and what you are entitled to. Many plans promise to pay for brand names only for patients to find out this is true only with a $50 copay when they show up at the pharmacy. Do research on your disease, but be careful of abusing Dr. Google. Use only reputable sources. Know your disease and what should you expect when you go to the doctor.

Speak up. If you believe you are not being treated right, speak up. I see so many patients come back from specialists with unanswered questions. When I ask them why they didn’t ask when they were there, they say that the doctor was too busy or they didn’t want to bother them. Ask the questions! It is our job to answer them. If they are headed out the door, speak up and tell them you have more questions. In fact, write them out and bring them to your visit and check them off as they get answered. As a family doctor, I may be able to answer them, but I cannot get into the specialist’s head to see what their thought process is. For example, a surgeon may insist you need surgery. I may disagree, but if I were privy to the surgeon’s reasoning, that could very much change my mind.

Appeal denied services. Primary care doctors do this many times a day, and we know it often doesn’t work. Many times when we have failed at getting something covered, I will see patients take charge and get approval for a medication or diagnostic test. Why? If anyone can answer this, it would make many of our lives much easier, but I often think it is the luck of the draw who you connect with at your insurance company.

Don’t follow medical advice blindly. When I see new patients, part of the history I ask is medications. In the same day, I see a patient with a color-coordinated graph of all their medications and later in the same day see one who is taking “a little white pill” they got in Mexico, but they don’t know what it is for. If someone told you to drink something that might or might not be poison, would you? Of course not! But, some medications are equally as dangerous when combined with other medications or in the presence of certain underlying medical conditions. Know your medications and why you are taking them. Know what you are allergic to. If you come to see me for pneumonia and know you are allergic to an antibiotic but don’t know which one, that does not help very much. Also, know what your medical diagnoses are. If you have had a heart attack in the past, you need to make us know that.

Don’t be embarrassed. Yes, I know this is easier said and done. I hear patients often say something is embarrassing, but I honestly have seen it all before. We don’t judge your behavior no matter what you may have done. We don’t care if you didn’t shower the day of your appointment. We are looking for the diagnosis and how to help. Sure, something may be extremely embarrassing, but it is the doctor’s job again to make you feel more comfortable in order for you to tell us anything that may help to reach an answer.

 

[Charles (Chuck) Maack]

Somewhat in similar regard to the relationship with physicians, and regarding my monitoring of medical and scientific websites to cover all I could to be aware of latest trends in Prostate Cancer medications, imaging, and treatment, I made part of my mentoring also keeping all physicians for whom I had email addresses aware of up-to-date changes/improvement considering they may not be aware because of the demands of their practices.  I had found that many physicians took umbrage to my efforts seeing me as one of those patients trying to tell them what they should be doing.  To assuage their egos, I came up with the following I would lead into what I was hoping to help them in being aware of recent trends:

 

Dear Physicians, I hope you recognize that periodic recent trial result information or articles from medical or scientific websites that regard Prostate Cancer are sent your way in the event you may not be aware.  I recognize that your daily practice occupies much of your time and likely, for many of you, you may not be aware of the results of this up-to-date information.  I spend a great deal of my time monitoring medical and scientific websites to try to keep on top of changes in the treatment of prostate cancer, and in so doing, I come across information similar to that in the below reference that may be of value to your awareness.  If the information is of broad-based interest to Medical Oncologists, Urologists, Radiation Oncologists, and Pathologists, I include all for whom I have email addresses as blind copies.  If of interest only to Medical Oncologists, or only to Urologists, or only to Radiation Oncologists, the message will only go to those physicians. When more than one practice should be aware, the message will go to each of those practices.

 

• INSERT INFORMATION HERE -

 

Charles (Chuck) Maack (ECaP) - Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor since 1996 to men diagnosed with Prostate Cancer and their Caregivers locally and on-line Worldwide.

 

Email: maack1@cox.net

Website: www.theprostateadvocate.com

My Efforts: https://tinyurl.com/y5tl6zh5

 

A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed.

 

My reason for my research, and reporting same, is in my effort to insure “no harm,” or at least “no more harm than absolutely necessary” occurs with the patients for whom I mentor.

 

My intent as a mentor is as an advocate to the patient as well as to assist the treating physician in explaining to patients the treatment strategy being recommended, but the patient telling me they did not understand. I attempt to determine what they ‘heard’ their physician explain but didn’t understand; determine the status of the patient from their physicians explanation and lab/pathology reports the patient should have in his own records; explain reasoning for the treatment being recommended; depending on the patients status, explaining the various options appropriate for that status and why they should be considered in the event that had not already been explained by their physician; and provide this support in layman’s language for easier understanding. I then recommend they further research that I provided and if they have further questions/concern to return to their treating physician and have them addressed.  With all patients and their caregivers who contact me, I remark that I am “Always as close as the other end of your computer to help address any prostate cancer concerns.”

 

My personal Goal in life: “ACT: Action, Commitment, Togetherness - versus AIL: Apathy, Indifference to cause, Lack of Unity.” (taken from and inspired by an observation by Medical Oncologist Stephen B. Strum, M.D., FACP)

[Patrick Turner]

Hi Barree and other readers,

Doctors tend to not say they don't know when the reality is they just don't. Often that's the time they refer you to a specialist who *should know* but even these knowledgeable ppl don't know all things about their speciality field, and I have had my oncologist say he could not read a scan because it wasn't his field of expertise.

At that time, the Canberra Hospital where I had been having regular appointments with him for 3 years up to 2016, CH still had Windows XP on some PCs they used, and they didn't have Intelliviewer software to see the 3D scan of my Pca at that time, like I saw it at Epworth in Melbourne in 2016. Well now things are lot better because he's learned all about theranostic treatment of Pca and understands the report that comes with the scan, written by the expert radiologists we have here in Canberra. The report is most important.

This morning I attended yet another appointment with my oncologist, and we discussed my Psa rise from 0.32 in late Nov 2019 to 1.3 now, ie, doubling time has been about 2 months, so now my Psa is on the march again, and I knew this was likely to happen, because although the Lu177 I had between Nov 2018 and May 2019 did seem to work, the mean time for holding down Psa is 14 months. Well, from the time I began Lu177 to now is 14 months, and the Psa has started to rise.

My oncologist said he didn't know much about why the Psa is rising or about what may be the next best way to attack my Pca, although he did say I may have to consider Cabazitaxel. I'd like to avoid this if possible. But it was too early to commit to that idea, and scans are needed to find out more about what my Pca is doing, and I may have a fresh new batch of mets to worry about, and maybe depending on scans, a biopsies of mets may need to be done, and then carefully analysed to see what might best work against them, and also do DNA test to see if I am Brca2 positive, which is highly likely considering my family history, and maybe then have to consider PARP inhibitors, maybe Olaparib.

My oncologist and I both knew well that it was impossible for anyone to know all that could be known before I began Lu177, and the expert research doctor I spoke to during Lu177 treatment also didn't know it all, which is why she spent most of her life trying to find out why men die of Pca, then be able to help them live longer.

I have been taking Xtandi since April 2019, and its effect was supposed to enhance effect of Lu177, but for how long? These chemicals can only work for so long, and its highly probable I have some Pca that has mutated and become resistant to Xtandi, or was not expressing PsMa from a long time ago so was not killed by Lu177, so is now trying to grow to kill me.

When Pca is not removed by successful surgery before it metastasizes, then it often leads to a long battle, but at early stages  ADT is simple, and usually works to hold Pca down and a man retains is QOL despite the complaints he makes about the chemical castration. But then the Pca begins to defeat the ADT and every other chemical used to slow it down or kill it, and it manages to rise up again and become a threat.

Well, there's no threat yet, with Psa at 1.3, but in another 4 months I can expect Psa to be 21, and so NOW is the time to be arranging action to be taken, not dithering around until Psa is 20. In 8 months, Psa could be 80.

Ever since I was diagnosed in 2009, I have never known if I'd live another year at any time. The doctors could not know either, so its NORMAL for doctors and patients to just not know what the future is.

Ppl ask me "how are you?" and I have to be honest and say "I don't know..." and if I am in a hospital this is the right answer because I might know a little more if I stay there to find out. They ask me "How yer goin?" and I often have to reply with "by bicycle" that was the case today, because I'd cycled 17km to get to see oncologist, his registra doctor, and the Pca nurse, 3 ppl in My Team. After we finished talking, I had a sandwich and cycled slowly home om 34C.

The nurse I saw when I'd arrived could see that blood pressure was fine, and heart rate was 44bpm, at 45 minutes after I'd arrived, so despite the Pca, I am very healthy.

The one thing patients should not say to doctors is "Damn you man, you are supposed to know!" Treating some things is dead easy, but cancer is the Emperor of Maladies, and every medical expert you meet could be wrong about what action to take next. Every patient could be even more wrong even though they may have read a lot about their cancer. 

I have to now deal with expensive experts who do their best to help, and if they have enough reason to recommend a plan us patients should be able to trust their judgement because we have never seen what the experts have. I began thinking Lu177 could help me before I began chemo in July 2018. So did my oncologist, and we both suspected Docetaxel would not work, and were not surprised when it didn't. It was no use for either of us to say "we know this will work".  I am use to a range of permanent uncertainties in my life. Fortunately, I had time today to ask about FDG scans and the work of Dr Hoffman at Peter Mac, and probably whatever expert I deal with in future will have thought about this and would be ready to apply the knowledge in my case, which is of course different to other cases.

But I may find that extremely small Pca mets that were not attacked by last year's Lu177 now have grown up a bit, and when ripe enough, they'll just need gunning down by more Lu177. Dr Hoffman has found this in some patients. I cannot assume I'd need Olaparib or some other rarely used expensive drug.

There are about 320 Pca patients attending Canberra Hospital, and their Pca varies, maybe similar in some cases, but I am sure any reasonable patient should see that the hospital does what it can, but rightfully sends you to experts elsewhere so that action will give you a better chance to live longer with high QOL.  

But for now, scans are required, discussions between specialist and experts had, and referrals will be made, and I get to talk to experts. I'll find out about any trials that may help, or what is just treatment for sale. We all like a falling Psa, but when it rises we get alarmed, and must act.

Patrick Turner.