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Sheryl M. Ness, R.N.
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Sheryl M. Ness, R.N.
Sheryl M. Ness
Sheryl Ness, R.N., O.C.N., is a nurse educator for the Cancer Education Program at Mayo Clinic in Rochester, Minn. She helps inform patients, families and caregivers about services and resources to help them through the cancer journey.
She has a master's degree in nursing from Augsburg College. In addition, she is an assistant professor of oncology at the College of Medicine, Mayo Clinic, and is certified as a specialist in oncology nursing. Sheryl has worked for more than 20 years at Mayo Clinic as an educator. She has a keen interest in the importance of the quality of life and concerns of people living with cancer.
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Living with cancer blog
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April 7, 2012
Health literacy — What are you missing when talking with your provider?
By Sheryl M. Ness, R.N.
Health literacy is defined as the degree to which you have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Healthy People 2010, US Dept. of Health and Human Services).
Research shows that about 40 percent of adults lack the level of health literacy needed to manage their own health.
There's more to health literacy than intelligence or the ability to read and write. Understanding the scientific words and complicated explanations that are many times a part of a physician-patient conversation can be a challenge for most of us.
However, if you don't feel comfortable enough to ask questions or to ask for clarification in terms that you understand, big problems can occur.
Learning that you have cancer is stressful. Complicated terms and medical jargon can make you feel confused, unsure and overwhelmed at a time when you're already stressed and worried.
Healthcare professionals are beginning to recognize that health literacy is a true problem and just how difficult it is for patients to navigate and understand the language of the health care system. Positive changes are underway that will help to bridge the literacy gap between patients and providers.
At Mayo Clinic, plain language is a concept that's gaining support in all areas of practice, education and research. Plain language is clear, concise, useful and easy to read or understand the first time you read it.
We're making inroads, but the road ahead has many opportunities for improvement. Using plain language in our patient-provider conversations, and in written education pieces will help bridge the gap in health literacy.
For people diagnosed with cancer, health literacy can be a big challenge. Cancer is complicated.
Here's an example of a sentence that a patient might hear during a visit with a cancer doctor ... "You have adenocarcinoma of the colon. It has metastasized to the liver, and may be causing your fatigue and low hemoglobin. We would like to treat you with a novel biological therapy that has been found to be effective for this type of carcinoma."
With plain language in mind, this explanation could have gone like this ... "You have cancer of the large intestine. It has spread to the liver, and may be making you feel tired and to have a low red blood cell count. We would like to treat you with a new drug that works well for this type of cancer."
We can probably recall a visit to a physician's office when the words used went over your head. It is better to ask questions immediately so that everything is clear, than to have problems later on. What's been your experience?
Follow me on Twitter at @SherylNess1. Join the discussion at #livingwithcancer.
16 comments posted
August 22, 2012 9:11 p.m.
We are meeting with an oncologist on Friday -- to discuss treatments for urothelial cancer - they removed a kidney tumor. What questions should we ask the dr?
- dmk
April 21, 2012 1:44 p.m.
Dear Patricia, I do not have thymic cancer but can suggest 2 alternative doctors who may be of help. Dr. Stan Burzyniski in Texas. He has a web site, well know alternative doctor who has higher success rate with brain cancers and other cancers the medical communtiy has little to no treatment to offer. Long story short he may be able to uncover the genes responsible for your cancer and then "turns them off". Also, Dr. Paul Yannick. I have been doing Dr. Yannicks treatment during and post stage 3 Triple Negative Breast Cancer and the program has allowed me to come off of all my throid medication. It was able to support my throid function. I was on 60MG Armour thyroid daily. Please have someone check into these alternative treatments as you said there was not available treatment for "cure" in medical field. Lots of love sent your way.
- Elise
April 19, 2012 7:34 a.m.
This post is for Bea, who is asking about resources related to myelodysplastic syndrome (MDS). Mayoclinic.com (this site) has a summary on the topic - simply search on our site (see search box above - left corner). Another great resource is the MDS foundation (www.mds-foundation.org). They have a forum online for patients and family members. I hope this is helpful to you.
- Sheryl Ness
April 17, 2012 5:05 p.m.
I would like more information of myelodysplastic syndrome. This subject is rarely discussed and would like to hear from others who have this illness. Thank you
- Bea
April 15, 2012 2:58 p.m.
Walter here again, just read all the blogs and found these very helpful, thks to all who have writen. All the suggestions make full sense, in that I'am responsible to take the action for the stress. Take someone with you, take notes, e-mail, phone, ask questions etc. My main problem is isolation and a lower self-esteem making asking extremely difficult to ask for help. Fear of people, places and things have made this life threating crisis that much more difficult. Anyway, again thks to all for your comments, bye Walter B.
- Walter
April 15, 2012 2:41 p.m.
On my first and continuing visits I found not only the explanations confusing about my diagnosis, also always being rushed by the doctors and no time to think things out, also, it seems like they are not wanting to disclose the nature of my diagnosis, if I do ask they side step and avoid giving my an answer. What is going on? This has been my stressful, experience. Has anyone else out there suffered the same experience, and how have you dealt with this.
- Walter
April 14, 2012 7:42 a.m.
This is true. Thanks for the article I feel supported and more educated and more comfortable to speak up. It's supportive to know I'm not the only one this is happening to.
- Elise
April 12, 2012 5:56 p.m.
I agree very much with the comments here. I am a registered nurse and it is still very hard to always follow all the information given at appointments for colon cancer. A couple of techniques are to always take an advocate to appointments, talk about your questions and have them written down before hand, some people even record the visit and let the provider know they are doing this so they can re-listen when they get home. My brother did this and it helped. He also used a binder to keep all his labs and copies of his scans and other important info. If you go to a doctor who does not take the time to listen and answer your questions, ask for another opinion or provider. Sometimes it is all about the chemistry and trust you have in your provider. I would never have gotten through the first 2 years if I had not had the amazing provider I have at Mayo.
- TLC
April 12, 2012 Noon
Home from appointment and may I just take a second to tell you that it was a positive experience. Not only did I get a good report tht the tumorw are shrinking and there are no new ones but my doctor was very open to my questiions. She ws patient and compassionate and gave the impresssion that I waas the only patient she had at the time. When I was done talking she asked if there ws anything else. They also gave me a copy of the last blood work and a copy of the Cat Scan report. How grateful I am. She also prescribed something for the nausea and asked that I let her know ifit is working. So, I guess communicate is the thing to do. Now, I am more relaxed today buty still nauseous but I will accept that when I know the medicine is working. The many prayers and medicine is working.
- Anna
April 12, 2012 11:18 a.m.
I have thymic cancer and the doctors say there is little treatment for this. I have had chemo twice and it put me in the hospital the doctor is now conversing w/ the insurance company to see what treatment they will pay for. Is there any one out here who has this desease I was told I was one in a million. I was also told I should go into hospice. Thanks
- Patricia
April 12, 2012 10:55 a.m.
I think I have a fair to good knowledge of my medical issues, but if one of my doctors uses a term that I don't understand I always ask, "What does that mean?". In one recent instance my oncologist noted that some lymph nodes in my adomen had grown back. Since I didn't really understand the lymphatic system I asked him for a description of it and how it worked. I took what he told me a did my own research and now I understand it much better. Don't be afraid to ask questions!!!
- Steve
April 12, 2012 10:01 a.m.
PS--Didn't realize there were more than one comment here. If you need to contact your doctor, and are unable to get through, leave a message with the appointment-clerk at the front desk to give to the doctor, OR write your doctor a letter/message and fax it to them. I always ask for all of their numbers and if they have an e-mail address. Only thing is, they will bill you/inurance company for a consultation in responding to any question you may give them, as if you were in the "office" talking to them. Make your list, as I previously wrote about. It will keep the stress down, for YOU!
- Myles
April 12, 2012 9:55 a.m.
Always ask questions, i.e., "What does that mean?" Always ask for patient handouts, brochures and other pamplets concerning your condition, and also for the meds you are taking. BE PROACTIVE! The days of "Oh, ok, doctor" are over! Make a list of your concerns, with the most urgent on the top, and then go down to the least urgent. You don't have all day to spend with your health care provider, so when your time is up, either ask for the answer to just one more question, or add to and rearange your list for your next visit. Eventually, all of your questions will get answered. ALSO, AND PROBABLY ANOTHER TOPIC FOR THE AUTHOR (or another) TO ADDRESS, is the timing of when you take your meds. I have HCL and have been in remission for 3 years, now. It took my doctors almost 4 years to come to a diagnosis. I take about 9 meds each day, and most are taken "twice a day." So, I took them at 7am and at 7pm. WRONG! Figure out side-effects and make sure you are not mixing your meds, that could PUT YOU IN THE ER! Read your pamphlets and ask everybody when you should take them. Prior to my diagnosis of HCL, I was also given a broncial dilator. Want to talk about naushia and a room spinning around? Ask qquestions and may you, especially our provders, keep the faith and may God bless each and every one of us!
- Myles
April 12, 2012 9:51 a.m.
I have been dealing with cancer since 2007, stage 1, then jumping to stage 4, metastatic. Initially I felt it best to let the doctor do the driving, then as I got down the road in this journey I began to question the decisions my first oncologist had made and decided to get a 2nd opinion on my care. With a new team in place for 2 years now I am comfortable taking my notebook with me, asking for definitions, getting answers, feeling a part of all decisions made. The doctors and nurses involved with my healthcare now are much more responsive because I am involved in every step of the decision making. I am also keeping a "diary" of treatments in case I become incapacitated and need my adult children to intervene. Educate yourself. You are responsible for your own care, advocate for yourself, or have someone you trust do so.
- Cynthia
April 12, 2012 9:46 a.m.
My experiance with my oncologist is positive during our actual visits up to the point where it is impossible to contact her directly after the appointment is over. Most doctors have an e-mail address that one can use. This doctor doesn't. I don't even have a direct number to leave her a message. I go through the switchboard every time. This is in contrast to the doctors that I am working with at the Cleveland Clinice who have provided me with office, cell and home phone numbers. And actually get back to me the one time I had to use one of the numbers. I hasten to add that I am very aware of the fact that this is a privalege and I use it very sparingly. However, I do feel like I am cut off from communication with my local onclologist because of the lack of communication avenues.
- Marie
April 12, 2012 9:15 a.m.
My answer is hooray for your encouragement. I have a doctor's appointment in about an hour and I am taking this article with me. I am still not sure why I am taking one of the shots and also what stage I am in for sure. I believe she does not want to make me anxious but I would prefer to know the facts and be able to understand them. Will post when I get home as to my experience today.
- Anna
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