John* and Sasha* are a Burmese couple who have been together for 23 years. Sasha was in a car accident 10 years ago and John says she has not been the same since. Sasha was diagnosed with Dementia/Alzheimer's, even though certain behaviors were not typical of the disease, such as doing the opposite behaviors of what she was asked. If asked to pull, she pushed. If asked to raise her arm, she would put it down, unaware she was incorrectly following directions.
When I first met John as his nurse through Caregiver Homes, he recounted Sasha's medical history by starting from the very beginning—some 22 years ago. It took me quite a while to get a clear sense of Sasha's current condition, from piecing together the details, signs, and symptoms that John described throughout his story. Because English is his second language, some of his phrasing was difficult to grasp as well. For example, when describing Sasha's memory loss, he would say that she "lost her common sense".
John's descriptions of her current condition raised alarms for me, so I decided to do some research to get to the bottom of it. After some digging, I found a 2013 CT scan showing a cyst in Sasha's brain. After connecting with her doctor's office, I discovered that they were unaware of the cyst and had no record of the 2013 scan. All this time while Sasha was declining rapidly and displaying behaviors not typical of dementia, John was told there was nothing wrong according to scans of her brain—when in reality, her cyst was growing.
While John understood English very well, I realized his different pace and manner of speaking could have prevented him from getting the type of care Sasha needed sooner. In doctor's offices, often there is limited time for discussion and clarification. No one was able to take the time to listen to John's full story, and therefore, this family fell through the cracks. In situations like these, the role of nurses and care managers is crucial. Professionals helping to guide immigrant caregivers can advocate for these families, and provide the tools for them to advocate for themselves. Here are ways for professionals to facilitate better communication surrounding a doctor's visit:
Prepare for the Doctor's Visit
Communicate with the doctor beforehand. Send, or have the caregiver send a letter or email to the office before the visit outlining their medical history and current condition. When the allotted time starts, the doctor will be fully briefed and able to discuss the most pressing and important issues with the caregiver.
Make sure to review the most pertinent questions and concerns with the caregiver or family beforehand as well. For caregivers with English as a second language, or limited medical background, they might have trouble thinking of the best questions to ask their doctor. With John and Sasha, I was able to use my experience and medical knowledge to review the best questions to ask their doctor for future visits.
Follow-Up After a Doctor's Visit
Make sure to provide any further education the caregiver or family needs after their visit with the doctor. In a rushed visit, caregivers can be hesitant to ask for clarification from their doctor, or be ashamed to admit they did not fully understand. Use time afterwards to clarify any information or instructions the doctor gave them.
Encourage them to be assertive and persistent in follow-up. When a caregiver feels that something is off with the person they're caring for, they should keep following up with their doctor or the hospital until they are satisfied or comfortable with the type of care they are receiving. With Sasha, her health was declining, but the doctor's office kept telling John she was fine. Eventually, we were able to find out what was the true cause of her symptoms through persistent follow-up.
Before Caregiver Homes, there was no one to advocate for Sasha and John. Sasha's previous medical providers lacked the time or willingness to get the full picture and realize the gap in their medical records, and John lacked the familiarity to navigate the medical system on his own. If he was provided with the right tools to demand better care of Sasha, the true cause of her symptoms could have been identified earlier on and received the appropriate treatment. As health advocates for people from a different culture, it's important to be patient and truly listen to the family's full story to not let their care fall through the cracks. Being part of a care team that took the time to really sit, learn, and process the caregiver and consumer's experience made a huge difference.
*Names have been changed to protect identity.