Technology-based communication helps the patient feel in control
NANCY W. BURKHART
The International Oral Lichen Planus Support Group has been operational since 1997 when I originally joined Baylor College of Dentistry as a faculty member. At this point, I cannot tell you exactly how many patients I have spoken with through email or even observed clinically over all the years. What I can tell you is that the person who contacts us through the support group falls into several typical profiles:
• He or she is newly diagnosed with a mucosal disease, primarily lichen planus. In some cases, the individual may be totally misdiagnosed and actually may have another skin-type disorder. Usually, the patient is given little information and begins to voraciously search the Internet for any information to learn about this new diagnosis.
• The person needs to find someone who can treat their problem, because he or she has had no success after months or years of treatment, and the patient is usually at the "end of their rope" and has lost all hope of recovery.
• The person may have developed a more serious disease such as oral cancer, and they are just plain afraid of the outcomes. Or, the person may have successfully recovered from the malignancy, but is trying to do all he/she can to prevent a second cancer.
• Individuals are basically just searching for someone who will listen to them because they feel no one else is hearing them, and they suffer from a lack of "control" over their disorder and possibly even their life as well.
Some of these issues are relevant in varying degrees with all patients who contact us. To me, the perception that they have little control over what is happening to them is probably the one that I have observed most often. Since I consider myself to value "control" over my own life, a lack of control is something that I know I do not enjoy myself nor do I react to very well. I fly quite a bit and think that flying has assisted me in adjusting my own "need to control" situations to a large degree. When you get on a plane, you essentially turn your well-being over to strangers and hope that you have chosen the correct plane, while praying that the pilot did not have an intense fight with his/her spouse and that no one on the plane has an untreated mental illness, including the crew. Additionally, you must also count on good weather coupled with a plane that has no mechanical problems or the possibility of terrorists who somehow managed to avoid detection. I always select a window seat since I basically fly my own plane from this window seat along with the well-trained pilots.
Loss of Control
This may sound ridiculous since, after the doors on the plane close, I really do not have any control until we land safely. Flying is known to be statistically safer than driving to your destination. But, with anything in life, if a bad event happens to you, is it 100% controllable?
This period of time when flying forces me to relinquish control puts my priorities in perspective and allows me plenty of reflection time. Philosophical thoughts always occur when I fly. The spaciousness of the world, its beauty, and the sheer magnitude of it always leave me with a sense of wonderment. This sense of wonderment just continues to increase with each flight, and it is easy to see why pilots select this type of work.
It is a "gift" that helps me continue to appreciate how fortunate I am, and that I am not always in control-but that I can make the most informed decisions that are possible at the time.
We all have issues over which we feel we must obtain an element of control. Studies reveal that "control" over our own health is a key feature in overall wellness. Patients tend to fare much better when given an active role in their own health matters.
We have seen more of a focus on a partnership with our medical and dental providers during the past few decades. Patients have access to their medical records and even our online test results may be posted before the doctors involved have even spoken with to us about those results.
Someone is listening
I was recently seen in the North Carolina Health Care System and had a very scary event occur. In an unrelated scan, an unidentified area showed up on my pancreas. As we all know, when your pancreas is involved in anything, it is serious. The next step was a CT scan with contrast. The four days leading up to this scan produced anxiety in me. My fate was dependent on this test and, of course, I imagined the worst-case scenario.
The nurse called me back several times to reassure me that even in the worst outcome, the spot/growth could be removed and re-sectioned. Well, that is not exactly reassuring. No one wants part of his or her re-sectioned pancreas in a jar!
However, I will say that just knowing someone was "listening to me" was somewhat soothing. Because I belong to a part of the North Carolina health care system that posts your results, your tests, and your entire health history online, I was able to also send notes with questions to my doctors. This aspect was helpful to me as well. It gave me a sense of control and also calmed me to a certain degree.
I equated this to how the patients who contact me through our support group must feel when they get a response to their questions. "Hey, someone is listening to me!" The patient also knows that we can provide some answers to assist them and calm fears.
Well, the good news is that the spot turned out to be an artifact. I told my physician that the four-day period leading up to the second test had me somewhat convinced that I would not make my 100th birthday, and I would not be around for all the wonderful things that life would have given me during the next decades. I feel truly grateful. Needless to say, the physicians were happy that I did not need further treatment and my notes to them would cease.
Listening after the 'bad news'
What about those patients we see on a daily basis? Sometimes we must give them bad news and often we do not have a mechanism in place to provide the "listening" skills that could provide support to these individuals. Research continues to support the fact that patients who are involved in their own health have better outcomes when there is an element of some involvement and they stay healthier long-term.
Listening to patients in our support group over the past 18 years has given me a good perspective on how lonely patients may feel. Sometimes just knowing that someone is listening to you can provide the comfort that you are seeking while alleviating fears. Suggs (2006) points out that many technology applications have the potential to make major contributions to meeting the needs of an unhealthy and aging population. Many elderly individuals are alone with limited resources and virtually no one listens to them or offers support.
Although medical facilities have been diligent in addressing the issues related to patient control and patient education, the dental community has been very slow in addressing this concept. Hygienists complain that expectations and "other tests/recordings" take away from the true focus on what they were educated to perform. Many complain of not having enough time to even do what is required. Dentists rely on the hygienist to "educate" the patient on brushing, flossing, and the use of dental devices. The primary focus of general dentists is on restorative procedures in most practices.
So does anyone really have time to truly listen to the patient or to answer questions related to their total health? Often, the patient who is newly diagnosed with any type of disease may not have follow-up questions until they have had time to process the information. Some dental offices do offer the connection with patients by using the Internet to respond in such instances, but many do not have the staff or want the added time or expense.
The medical community, on the other hand, uses technology to relay information to patients and acts as a resource for the patient. The dental community has added this dimension with designated professionals to obtain information and listen to patients, but mostly in the form of support groups for specific issues and mostly outside of the dental office. This is especially relevant in practices that are large and also in those practices treating disease states such as oral cancer and mucosal diseases.
Chan et al. (2013) suggests that providing patients with their health information and tools to manage their own health issues might be beneficial. The authors also questioned the role of the clinician as the "protector" of patients' health information. The authors state, "Patients are taking advantage of online personal health records (PHRs) or patient controlled health records (PCHRs) to collect, manage and control their own health information."
As always, listen to your patients and continue to ask good questions. RDH
An oral medicine perspective
The emphasis on the "total health concept" of the patient is increasing! Dentistry and dental hygiene are being seen more as an intricate part of this total health concept, and oral health is recognized as an important part of total patient wellness. Since the population is aging with many individuals at high risk for heart issues, diabetes, and obesity, more health-related problems continue to rise. All health-care practitioners will be involved in this health concept in the years to come.
Hygienists may assist patients by answering questions in a timely, informed manner related to new concepts or techniques that have been introduced during a recare appointment, offering an email type response from the office as part of following up.
A question-and-answer email site could be designated, allowing patients to obtain responses between appointments instead of the longer wait periods of six to 12 months when an undesired behavioral habit may have been acquired.
Many dental offices do offer technology-based videos for children and adults that may be watched during the dental visit.
Some offices do send out monthly newsletters or offer dental/general health information on their website for patients as well. This Internet and email concept involves the patient and also gives the patient a sense of control and participation in their own health issues.
As more patient information such as digital images and tests results are posted within the patient's health file, the dental community will be even more involved in assisting the patient in managing their own health outcomes.
The dentist and hygienist have an obligation to consider both the physical and mental well being of our patients. Perhaps there is a new role for a person who is designated to promote patient wellness/education within the dental office?
NANCY W. BURKHART, BSDH, EdD, is an adjunct associate professor in the department of periodontics/stomatology, Baylor College of Dentistry and the Texas A & M Health Science Center, Dallas. Dr. Burkhart is founder and cohost of the International Oral Lichen Planus Support Group (http://bcdwp.web.tamhsc.edu/iolpdallas/) and coauthor of General and Oral Pathology for the Dental Hygienist. She was a 2006 Crest/ADHA award winner. She is a 2012 Mentor of Distinction through Philips Oral Healthcare and PennWell Corp. Her website for seminars on mucosal diseases, oral cancer, and oral pathology topics is www.nancywburkhart.com. She can be contacted at [email protected].
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6. The International Oral Lichen Planus Support Group. http://bcdwp.web.tamhsc.edu/iolpdallas/webcast-archives/
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