During my morning commute a few months ago, I switched on the radio and caught the tail end of a brief NPR story about doctors not communicating to their patients when they are diagnosed with Alzheimer’s. Because I am surrounded by this disease in the workplace and have experienced it first-hand in my family, I was quick to become empathetic and my heart sank into my stomach. It just seemed so unfair and, well, wrong.
The next day, I decided to dig a little more deeply and find the article in writing. Maybe I missed some important details at the beginning of the story. Maybe the twist was that these patients were being diagnosed but simply forgot after they walked out of the doctor’s office doors, because, after all, they do have memory loss and dementia. Unfortunately, that was not the case.
According to this specific study, an alarmingly low number of patients with Alzheimer’s (only 45%) claimed that they were given this diagnosis by their doctor. When the study looked past the patient’s input, still only 53% of family members or caretakers reported being aware of the diagnosis. The reasoning behind this sits among a variety of excuses, ranging from the doctor having limited time in each appointment to the doctor simply feeling uncomfortable.
Is It Acceptable to Withhold the Diagnosis?
Are these legitimate excuses? Is it ethically acceptable to withhold information that is unknowingly being written down in your medical records just to save one or both parties from feeling uncomfortable?
Sure, it feels terrible to look someone in the eye and tell them devastating news, but when a person is relying on someone, their doctor in this case, to keep them informed, the doctor needs to take responsibility here. Withholding this information puts the patient at risk of harming himself, as well as those around him. What if those around a person with Alzheimer’s believe these forgetful moments are merely part of a normal aging process? Maybe one day the person with Alzheimer’s cannot recall a street name, which may seem normal, but what if the following week(s) lead to such scenarios:
The person with Alzheimer’s…
- Goes for a walk or bicycle ride without telling anyone and gets lost.
- Accidentally leaves the gas burner on all day while home alone.
- Needs help but forgets how to dial the phone.
- Leaves the water running in the bathtub, does not realize it, and goes to bed.
- Gets in a pool alone and forgets how to use their legs, loses footing, and goes under.
Benefits of Knowing the Diagnosis
Some of these examples may seem extreme, but they are actually scenarios that either myself or someone I know has personally witnessed. So many dangerous situations can be avoided if family or close friends are aware of the diagnosis. And though there is no cure, doctors are finding medications that can help slow down the disease process, and researchers are finding more and more ways for people with Alzheimer’s to gain a better quality of life through means such as music, aquatics, memory care, and more.
I often see family members or caretakers get frustrated, and even angry, with people who are forgetful. When we are able to have a medical diagnosis, can realize that it is truly a disease and out of the person’s control, and can view the whole picture, we are opening a door to having more compassion and understanding for the situation a person with Alzheimer’s is facing.