This blog post is being authored by me, Dee Dee, and my daughter, Stephanie, also the copy/art editor on the blog. We wanted to help others take a closer look at how to better communicate with your doctor and health professionals during surgery and treatments from the perspective of a patient and family member.
I’m sitting here writing to you trying to recall the initial feelings my family and I faced with the onset of my symptoms that led me to the diagnosis of colorectal cancer. The day we received the news it was so overwhelming. I remember immediately crying and sobbing uncontrollably when my doctor confirmed the diagnosis. He continued to talk but I don’t remember one word he said. Just about everything was racing through my mind at the time. I thought I would die. My children… how would they handle the news? Finally, I thought I heard a voice saying wait listen to what I’m saying … it was the doctor saying it’s not over its operable. I finally stopped sobbing and started to listen.
The Patient-Doctor Communication Gap
It’s difficult to pay attention to the details when you’ve been given a serious diagnosis followed by surgery and/or a series of treatments.
I was recently in a discussion about a loved one who’s going through a tough time between diagnosis, prognosis and treatment. The reality is we don’t plan for a positive result on test for cancer. We don’t foresee a loved one incurring a life altering medical condition so when it hits us we’re almost always unprepared. Battling chronic pain, being given a serious diagnosis, faced with a series of tests, insurance limitations and treatment options can not only be overwhelming but also very frustrating. We have questions but we’re in the hands of our trusted medical professionals. They know best right?
Patient-family member’s role in improving communication
First step is filling the advocate role to close the communication gap. Often the patient is not in a position to take on the added responsibility of documenting symptoms and researching options. For me, my spouse’s involvement in my treatment and aftercare was critical to my healing. There are far too many oversights that can occur when no one is watching. An advocate can be a spouse, family member, friend, health advocate, case manager, etc. The important point is another set of eyes involved in the process.
Verbalizing your questions and concerns[i]
Sometimes we’re afraid or embarrassed to talk about the questions and concerns in our thoughts about post-surgery/post-treatment life. It’s important to verbalize your questions with your doctor(s) to help them better understand the patient and family member’s perspective and enable them to problem solve and give suggestions to help improve quality of care and life.
Record Keeping/Portable Health Records (PHR)/Health Journal
Keeping a record of symptoms, doctor’s visits and treatments is of significant importance. Many of you, like me, are embarrassed to discuss symptoms with your doctors or you think it’s a normal part of ageing. It is our responsibility to keep track of our health and to ask the doctor the right questions.
You have a right to request copies of MOST of your medical records
There are a few exceptions to the rule but it is always a good idea to request a copy of your medical records to keep in your PHR/Health Journal Binder.
1. How do I request copies of my records?
Write a letter to your doctor including the following (excerpts from about.com “How to Request Your Medical Records”:
- your name, including your maiden name (if applicable)
- Social Security number/ID number
- date of birth
- address and phone number
- e-mail address
- record(s) being requested
- date(s) of service (months and years under the doctor’s care)
- delivery option (whether you prefer to pick up, fax, e-mail, etc.)
- make a point to request a copy of your records at each doctor’s visit.
- note: there may be a per page copy fee charged (e.g., $0.75 a page). If you have financial limitations and cannot afford to pay for copies of your medical records, make a notation in your request letter that ‘I cannot afford to pay’.
- NOTE: Diagnostic lab test records, for such tests as blood tests, CT scans, x-rays, mammograms or others, should be requested from the doctor who ordered them, or your primary care physician. In most states, the lab will not provide them to you directly.
Keep in mind a doctor’s schedule is very hectic so be mindful that you will have a small window of time to ask your questions. I suggest writing all of your questions down and then reviewing the list with your case manager/patient advocate to see if any of the questions can be answered by your support team without enlisting the help of your doctor (e.g., insurance questions, assistance with finding in-patient/out-patient acute/sub-acute facility for rehabilitation, sharing internet information about a disease/procedure, etc.). When you meet with your doctor bring two copies of your dated questions list with you so you will both have a copy and be ready to discuss the facts and be sure to have a pen on hand and extra paper to take note of the doctor’s response (this can later be recorded in your Personal Health Records (PHR).
- Questions about your diagnosis/symptoms (further clarification what it means for quality of life)
- Questions about medications and doses and any side effects you’ve experienced
- A food journal and any significant questions you have about how certain foods effect you
If you are feeling or experiencing something similar, I’d love to hear from you. I didn’t have anyone who could relate to me at the time and I don’t want that for you. Please send me an email or reach out to me via Facebook or Twitter.
With love and God’s Blessings,
Email Me: firstname.lastname@example.org
E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.