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Cancer Education for Doctors and Patients

Cancer Education for Doctors and Patients

Posted by cancertakesflight on Feb 17, 2019 11:16 am

Sometimes it's not only the cancer patient that has to learn a lot of medical information in a short amount of time. Sometimes it's the medical professionals that have to learn how to deliver that information so that it is easier to understand and remember. The following is a link to a blog post that I wrote for Cancer Care Ontario about this subject:

Cancer Education Blog Post

What are your thoughts about how you would like to receive information about your cancer? Can we teach medical professionals to communicate more effectively?

cancertakesflight (Debbie)

Re: Cancer Education for Doctors and Patients

Posted by ashcon on Feb 17, 2019 2:39 pm

Hi Debbie cancertakesflight‍ 

This is a great post and a great question on this topic. 
For me what would have been immensely helpful would have been if the doctor simply asked me, "How do you like to receive information.?"   
I feel that by asking me that one simple question, the goal of empowering me to be a full partner in the management of my care would have been attained right from the start.

Re: Cancer Education for Doctors and Patients

Posted by ACH2015 on Feb 17, 2019 4:18 pm

cancertakesflight‍ 

Debbie,

A person's understanding of their situation makes all the difference. Anyone attending a consult is really in the drivers seat once the doctor starts talking. Some doctors asked me about my situation before they spoke. It benefits both parties. The doctor sizes you up as a patient and your ability to understand what you've been told - and in doing so gives them an impression of how to provide you with information. Its important for the patient to let the doctor know what they want to be told and how. Some people choose to keep information sharing to a minimum, others want to know everything - no holds barred.

As a patient, family member or caregiver, if you don't understand what is being told to you - ask for it to be explained in layman's terms, simplified to the point of you understanding. Just like in school, some students need a little different method of sharing or explanation form the teacher so they all "get it" at the end of the day. Doctors and patients are no different.

Helpful sharing assists I would suggest is handing out written information /  pamphlets (Canadian Cancer Society is an excellent info source) at the consults that explain basics about everything cancer related, nurse navigators, and most importantly the patient taking some responsibility for seeking out where and from whom to get reliable information to help them from the doctor, hospital etc..

The majority of my specialists have been very good at explaining, clarifying, drawing diagrams and providing me with what I've requested in information sharing so that I understand my situation clearly.

I can't think of a single hospital that failed to have written resources available for me to read up on any part of my care. The additional resources are there - I share them on this site multiple times daily myself. Then I took it a step further with reliable source self research.

Doctors and patients share equally in the responsibility to provide or be provided with patient information in a way that gets the message across accurately and clearly in a reasonable amount of time.

ACH2015 - Andy.

 

Re: Cancer Education for Doctors and Patients

Posted by Hansi on Feb 18, 2019 9:29 am

My complaint is that my doctors do not share the results of my scans, bloodwork etc with me. I only found out when  mentioning pain in my lower jaw that, yes, I have cancer in the jawbone too.  I’m kept completely in the dark about how wide spread my metastatic bone cancer is and what my prognosis is. Oh, you’ll be fine for a while yet, is all I get. 
Why are we treated like children in this province.  New Brunswick is a bilingual province. I am anglophone but our hospital is francophone. That means that, yes, I can speak English to my health care team but all my records are written in French only. So when I ask to see them I’m told that I wouldn’t be able to read them anyway. Something is wrong here. Am I not entitled to read my medical records? 

Re: Cancer Education for Doctors and Patients

Posted by cancertakesflight on Feb 18, 2019 10:49 am

Hansi‍  I can't even imagine what you are going through when there is a language barrier. We often remind each other to get a copy of our test results so that there is always a point of reference for not only yourself but any other doctor that you may go to see. To leave out that you have cancer in your jaw is inconceivable. There has to be someway to get a copy of your results in English. I did a quick search online and found out that there is a medical database that you can access for at least some of your information. I'm assuming that those results would be in both English and French, but you're never supposed to assume anything. The article is from 2013, so if anything, I would hope that it has expanded it's scope. If not, I would be asking to see if there is some place where you can access translated results and, if not, I would ask your doctor to walk you through each and every line of your report. If that annoys him, too bad. If the link below doesn't get you where you want to go, I'm sure your doctor will help to point you in the right direction if he doesn't like the line-by-line routine. 

https://globalnews.ca/news/592783/quebec-rolls-out-new-electronic-database-of-patients-medical-records/

ACH2015‍  I agree that patients should be part of their own education; however, I don't know that everyone can do what you suggest for the following reason:
  • In 2012, health literacy in Canada was less than 50%. While I would hope that it has improved since then, I doubt that it is where it needs to be. 
  • People may struggle to ask the right questions, especially at the beginning, especially when you don't know what you don't know. You have to have some foundation of knowledge and I don't think most people have a foundation in cancer terminology unless that have had it more than once. For example, no one mentioned having both my breasts removed was an option and I didn't think to ask.  
  • Not everyone will go on the internet to go to reputable sites to get information. I actually stopped going on the internet because I found it overwhelming and sometimes there was conflicting information. I was not given a list of what sites were good to use as a resource. With all the links on any given internet page, sometimes you end up on a page that is not a good one to read. 
  • I agree, there are some great booklets available as a resources, but if you aren't using the internet, you don't realize that there are many more resources that you may not know about. Even if you know about them, people still like to talk to other people who have been through the same thing. The use of all the Facebook groups and even this forum shows how much people like to learn from other people over doing a lot of reading. 
  • There is an emotional element to being diagnosed with any disease, which can interfere with the learning process. Talking to other people allows people to collect information at the same time as receiving the comfort and encouragement others. 
  • People like to receive recommendations. While we may hope that they do their own research, it won't necessarily be the case. For example, someone who is not familiar with cars may read all they want to try and determine what car to buy, but part of that process will be to talk to other people to see if they have heard anything about a particular make and model. The human factor is often the deciding factor. 
  • People like analogies so that they can apply what they don't know to what they know. This is not always something that is available in traditional documentation. 
While the goal is everyone to be responsible for making educated decisions, there are a lot of variables to consider. Not everyone knows and will ask for a more detailed explanation. Many people will just take what the doctor says at face value. 

cancertakesflight (Debbie)

Re: Cancer Education for Doctors and Patients

Posted by ashcon on Feb 18, 2019 11:07 am

Hi Hansi‍ 

I was shocked (appalled! dumbfounded!) when I read your note about the lack of information you are being told by your doctors.  You are correct - this is not right.

I did some digging and found this information for you on New Brunswick's Personal Health Information Privacy and Access Act. Click on "Part 2 - Access to Personal Health Information", and scroll down to the section, "Official Languages".

After you discuss this with your doctor, if you are still not satisfied with the information you are being given, or are not being provided with a review of your test results in english, then please let your doctor(s) know you will be going to your hospital's Patient Advocacy centre. 
Chances are you are not the only one in this boat, but others may be too timid (or intimidated) to raise their concerns.  You can make it right for yourself and for others. 

ACH2015‍   You are a champion for getting information and getting the respect of your medical team.  Sometimes you have to rattle some large cages, but you get there (eventually!).   
Stereotypical as it sounds, I find that, as a woman, I am still, at times, fed very minimal information and am easily dismissed too often for my liking.  Hard to believe in this day and age, but sexism is alive and well - even in such a life and death situation as cancer care.

Any other ladies out there find this as well?

Re: Cancer Education for Doctors and Patients

Posted by ACH2015 on Feb 18, 2019 11:12 am

cancertakesflight‍ 

You asked:

"What are your thoughts about how you would like to receive information about your cancer? Can we teach medical professionals to communicate more effectively?"

And I answered with my post. including my experiences and suggestions.

Each experience will be different, and are based on the tools people have come to use in their everyday living.

I have read articles in the past that indicate the patient experience and talking to patients is being paid more attention in the many facets of medical school - to improve the patient experience. I've personally observed residents and fellows sharing very well with me during pre interviews when the specialist sends them in ahead of the main consult. 

Maybe share with / suggest to C.C.O. that there are still issues that need to be worked out for those in need.


ashcon‍ 

I find what you said troubling in your post - about being fed minimal information because you are a woman. A patient is a patient regardless of their sex, and are entitled to the same level of sharing.

From the perspective of male vs female doctors, I've had about a 60/40 split (women/men) doctors so far. From an info sharing perspective I'd say the sharing from them is just about the same.

ACH2015 - Andy.


 

Re: Cancer Education for Doctors and Patients

Posted by Hansi on Feb 18, 2019 11:37 am

Thank you all for the useful information. I’m seeing my doctor tomorrow and will ask for my scan results in writing as this is allowed under the NB health act. Even if they are in French I will be able to read them with help of friends and dictionaries. 

Re: Cancer Education for Doctors and Patients

Posted by cancertakesflight on Feb 18, 2019 11:59 am

Hansi‍ I apologize for providing a link for a Quebec resource. I know you said NB. My bad. 

ACH2015‍ I apologize. I did not want to say that you are wrong in what you say. As you said, I did ask for opinions and stories and I am glad that your experiences have been positive. I'm also glad to hear about the range of experiences. As you said, we all have our own unique experiences.

I am glad to see people so actively participating in this discussion


cancertakesflight 

Re: Cancer Education for Doctors and Patients

Posted by Elsie13 on Feb 18, 2019 4:55 pm

I'd love to discuss more the bilingual situation in hospitals and clinics. I grew up in Scotland and New Zealand and went to Toronto at age 17.  At age 26 I moved to Montreal, thinking I would move back to Ontario within 2 years. (36 years later, still in Montreal).   I tried speaking French, and people replied in English.
    When it comes to being bilingual, in a hospital designated as French, doctors and janitors are much more likely to be bilingual than nurses. So to give an example, I'm at a clinic for the flu shot, and I saw on the form that the nurse is supposed to ask me a bunch of questions, before giving me the shot.  (I think I can read short passages of French fairly well). She only asks me two questions out of about seven.  She says  "So you have 64?" :"What, pardon?"  "So you have 64?"  I was 60 years old.  She was asking me my age!
   One time I was at the cancer clinic, a few months after surgery, in the exam room with the doc and nurse.  They had a short conversation in French, I think about me, as they sort of nodded in my direction.  This is the doc who did my my 5  hour surgery, but really, is that rude or what?   They both spoke to me in English with no problem whatsoever. 

Re: Cancer Education for Doctors and Patients

Posted by Hansi on Feb 18, 2019 9:30 pm

This happens here all the time that doctors and nurses will converse about me in French and only speak English when they address me personally. It’s very infuriating. 

Re: Cancer Education for Doctors and Patients

Posted by ACH2015 on Feb 19, 2019 4:46 pm

Elsie13‍ and Hansi‍ 

Just thinking out loud here, and I'm not defending anyone.

I wonder if the reason the doctor and nurse conversed in French between themselves was due to both being born with French as their first language. 

Language is at times automatic, and perhaps it was not even a conscious change of language use by them.

Knowing that we don't speak (French) their language, means they revert back to English to share with us.

I worked at times with a group of French guys years ago. They were referred to as the "French Connection". If I was in the group talking, they would often switch back and forth in both languages. I saw this as a reflex when certain words or phrases made more sense to them in French. 

ACH2015 - Andy.

Re: Cancer Education for Doctors and Patients

Posted by Elsie13 on Feb 19, 2019 11:01 pm

I think you are right, Andy, ACH2015‍ , when the doctor and nurse were speaking in French, it was just an automatic thing, not planned. I shouldn't really worry about that. What is sometimes concerning, is when it seems like a nurse or technician is supposed to give you information, but they don't, because they can't think of how to say it in English. 

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