By Eleanor Feldman Barbera, PhD
“How long have you had Parkinson’s?” the psychologist asked Mr. Jones during his initial evaluation.
“They just told me the diagnosis when I got here last week, but I suppose I’ve had it for a while.” He said it casually, but his hands were clenched and his voice held a note of tension.
“Did the doctor explain what it is or give you information about the Parkinson’s Foundation?”
“No. All I know is that it’s the same disease that young actor has—what’s his name?”
“Michael J. Fox.”
“Yeah, that's the one."
The psychologist assured the resident she’d bring him a pamphlet from the Parkinson’s Foundation the following week. It would work better, she thought to herself, if the medical staff provided the physical health information so she could follow up with the mental health aspects.
Residents often enter long-term care with surprisingly little knowledge about their conditions, whether they have a recent diagnosis or have been living with an illness for many years. This lack of information isn’t good for residents, families or facility staff.
Here are five reasons why we should teach our residents about the illnesses they live with:
When residents have information about their illnesses, they are more able to accurately report their symptoms to the medical team and to provide the type of information that improves treatment. A resident without knowledge is a passive recipient of medication and care; a resident with knowledge can partner with his or her medical team to address needs and find effective solutions. Joan, for instance, had multiple sclerosis and was keenly aware that the hot summer made it difficult for her to walk in rehab. She was able to work with her therapist to find more manageable activities so that she could continue with her rehab program during the summer months. Contrast this with Leon, who blamed himself for his MS symptoms, believed his difficulty walking was a personal failure, and was referred for psychotherapy when he stopped attending rehab. With encouragement and some psychoeducation about his illness, Leon was literally able to get back on his feet again.
Uneducated individuals are less likely to comply with treatment recommendations or may reject medications due to side effects without fully considering potential benefits. Individuals who understand why particular medications are given and how to cope with potential side effects are more likely to comply with treatment. They’re also more likely to have reasonable, informed objections for foregoing a particular course of treatment—reasons that can be readily understood and documented. For example, Lucille was initially resistant to the dialysis treatments that were recommended for her. Once she gathered information and spoke to some other residents in the dialysis program, she ultimately decided that its life-saving benefits were worth the time and discomfort of the treatments. Thomas, on the other hand, decided against dialysis and was able to explain and document his end-of-life wishes clearly, based on his knowledge of his illness.
When faced with an information vacuum, people often assume the worse. For example, residents may erroneously believe their illness is imminently fatal, as did a woman with ALS. In a fit of rage immediately after receiving the diagnosis, she shredded all her photos because she believed her life to be over. Ten years later, she continued to regret that action. Lucille, who opted to pursue the dialysis treatments, noted that the fact that she knew what to expect about dialysis made it an easier decision to move forward despite her apprehension. It also made it easier to manage her anxiety when her graft site became infected because she knew in advance about the possibility of infection and how it would be treated.
Residents are no different than others with illnesses who find themselves in the role of having to explain their disease to others around them. Residents may need to describe to aides why their osteoarthritis makes it so difficult to get out of bed, or to their family members why their diabetes makes it dangerous for them to eat the birthday cake so lovingly offered by a grandchild. Providing residents with information about their illnesses and about how others handle the social aspects of similar conditions can reduce their stress and improve their ability to communicate with those around them. For example, Juana felt very uncomfortable with her involuntary arm movements, which got worse when she began speaking—so she stopped speaking. Provided with information about her dystonia, she decided to call it her “dancing arm,” and explained it that way to the other residents with whom she now chatted in the hall.
While the current cohort of nursing home residents tends to view the medical team as the decision-makers, the upcoming baby boomer cohort is likely to demand a more active role in their healthcare. They will expect information about their diagnoses and treatment and to have educated discussions with their physicians and other team members. Currently, it’s our younger residents who are Googling their illnesses on their smartphones and laptops and looking for ways to join research studies; soon it will be almost all of them. LTC facilities looking to appeal to the coming boomers will benefit from determining now which resident education techniques work best for their facilities.
Coming soon: 7 Simple Methods to Educate Residents About their Diagnoses
Eleanor Feldman Barbera, PhD, is a speaker and consultant on psychological issues in long-term care, and author of the forthcoming book, The Savvy Resident's Guide: Everything You Wanted to Know About Your Nursing Home Stay But Were Afraid to Ask. For more information, visit Dr. Barbera's website, www.mybetternursinghome.com.