Take charge of your medical information
by Kathryn Kilpatrick
Taking an active role in our health care is essential to improving the quality of our lives. Consider some of these ideas to help in communicating more effectively with your health care professionals.
Ever had a doctor's appointment and forgotten to report something that had happened weeks ago, or remember later a question you neglected to ask? In some cases, you may have been given a lot of new information during your appointment and are not sure that you recalled it all exactly, or thought of some other questions once you were home. Yes, it happens to all of us some of the time.
Many years ago, I had a serious medical problem with some additional health issues that arose from my inactivity level from such an extended period of time. What I noticed is that in an attempt to make the most of my visits to my doctors, I needed to keep better track of the symptoms and how they responded to different treatments. There was nothing wrong with my memory, but the stress and the uncertainty as we explored a diagnosis created a situation that required me to do more than rely on my memory from appointment to appointment. Recently, while I was clearing out the basement, I came across those detailed records from almost 30 years ago. As I reflected back on those years, I realized how this personal situation provided me with some of the ideas I now share with others who are trying to provide information to a variety of health care professionals in a way that can maximize their appointment times and health care.
Most of the patients I have seen though the years have been homebound, and the scenarios vary greatly from those living alone at home to those with significant impairments in communication and memory. Having a person unable to recall or provide the necessary medical information during an initial assessment is a frequent occurrence. Even if the caregiver is a spouse or close relative, they may not know or remember all of the medical issues that have occurred through the decades. In some circumstances, it is weeks later that an important piece of information may be remembered, but often, by then, the details have become blurred.
Your Personal Medical Record Summary Sheet
One of my clients had a serious stroke that impaired his speech. Since he had significant word recall deficits, he struggled to answer many of the background questions. Providing any medical history was very frustrating for him and made it difficult for me to do a complete assessment.
His wife was at work and unable to be present for the session. Fortunately I was able to contact her when she returned home that evening, and she provided more specific information that I needed to create my plan of care. My suggestion was that they put together a medical history information sheet and that they keep that in a place in their home for easy access. With this type of information available, this gentleman would have been able to answers yes or no questions about the details with good accuracy, and we could have used that initial session to complete a more detailed language assessment and get started on treatment strategies. With multiple health care professionals evaluating him over the next few days, the information sheet would have been most helpful for all involved, and with updates, can become a key document to take to further medical appointments.
Several years ago I had a woman with swallowing problems who had a very extensive history of physical problems secondary to problems with back pain spanning many decades. She had actually created a list of those problems and written them in pencil on a piece of paper that had been folded many, many times. She was on the right track, but I made a suggestion that took her system to the next level. She now had difficulty printing so I recommended that she have her grandson put the information into his computer and print out several copies. If there were new things to be added, he could put them in the list and print an updated copy. Now, whenever she has an appointment with a new health care professional, she brings a copy of her updated and detailed medical history information sheet with her so that person can review it first, then ask for any additional details that may be essential to the overall assessment.
In Case of Emergency
When I am working with a patient with Alzheimer's disease or a related dementia, I usually have the opportunity during the course of therapy to notice what is in place for the safety of the caregiver, as well as my patient. My concern is what would happen if the caregiver had a medical emergency and emergency responders were contacted. The person with memory loss, in many cases, would not be able to provide any detailed information.
Typically, if the family does not have an emergency alert system in place, or feels they do not need one, I use that as an opportunity to help them process their options. In a recent situation, my patient's wife was the caregiver and had been for many years. Her husband had progressed significantly in his memory loss and had been recently diagnosed with Alzheimer's disease. I asked the husband what he would do if his wife was seriously ill or fell and was unable to get to the telephone. He thought for awhile and said he would look for the address book and find the number of a neighbor. In some cases the person will say they would call for an ambulance but then cannot remember the number to call, or will have trouble dialing because of visual or physical limitations.
This type of questioning helped the caregiver to take a look at some of the suggestions I recommended, based on their particular situations. In some cases, all I did was tape on the phone in each room the 911 emergency number. Others wanted more information on the emergency response system options. Taking it to another level, I suggested they create a medical summary information sheet along with contact numbers, because if someone came to assist them, the person with the memory loss is unlikely to be able to recall any of this needed information. It was also suggested that this information be available not only in the home, but in their car(s) and also in their wallets. They could as easily be out shopping or visiting someone and have a situation occur and not have access to the information at home.
Asking for Clarification
I mentioned that I had some complicated medical problems. I was fortunate to find a specialist who had the answers to the cause of my illness and who presented a treatment plan which was modified as needed. The tricky part was that he was internationally known as an expert in his field, and even though I was a health care professional, it was a challenge to keep up with the extensive details he provided in a area totally new to me. He was always willing to take the time to clarify and answer questions, but this may not always be the case. Years later I tried to encourage him to create some educational materials, emphasizing the need to bring it down to laymen's terminology.
What is important in these situations is to honor who you are. When you are being given information you do not understand, or are having difficulty following, do not hesitate to ask for repetitions or request something written that you can refer to it later when you can read the information over more closely.
It is never too late to change some of your automatic pilot habits and invest some time in creating a system for organizing your medical information. Medical care is a partnership, and in case of an emergency, those who may need to provide this information for you will better be able to do so with the necessary details.
In my blog, I will be sharing more practical tips for enhancing communication with your health care professionals and maximizing your appointment times.