Human beings retain about 25% of what they hear, but after three days, that drops to somewhere between 10-20%. So it’s no wonder that what a non-professional caregiver hears about home visits, covered medication, equipment, treatment plans etc. and what professionals think they are conveying can be worlds apart. It’s a recipe for frustration and stress on both sides.
Over and over I have seen families frustrated by the difference between what they thought they read or heard and the information the professional thought he or she was giving. This can be distressing for an already overwhelmed family when they feel they are right about their interpretation of what was said and yet have only their already overburdened memories to buttress that conviction.
To add to the problem, medical professionals are figuring out how to navigate through the Medicare reimbursement cuts that are resulting in shorter length of stay or visit. As a result, attention to customer satisfaction can fall through the cracks. Hospice workers in particular are aware that they meet families at a very vulnerable and often overwhelming time in life. While intending to provide compassionate care and comfort, doctors, nurses, aides and administrators can all inadvertently add to the anxiety and stress by failing to effectively communicate facts about specifics of care. Navigating this divide well can instill confidence in the caregiver and offer reassurance to the medical professionals that communication is clear.
What can those caring for a loved one do?
- Repeat back what you are told (if having an actual conversation) so any misunderstanding can be corrected immediately.
- Either highlight or take notes on documents or written instructions, and make an appointment to discuss your questions. Avoid communicating through an email, which can be misinterpreted by the reader. Emails do not necessarily reflect emotions, so the recipient may not ‘hear’ one’s frustration or uncertainty, which factors into the equation.
- Keep a log with times, dates and information on medications given, treatments received or wound care administered to accurately discuss with medical professionals as needed.
- Ask questions. Anytime someone says something you don’t understand, or that doesn’t feel right ask for clarification and jot down the answer.
- Always call if there is a question or problem. Never assume.
At times we are afraid to ask questions because we are not sure we want to know the answers. One of the most difficult tasks I ever did as a nurse was to have a friend sign the consent forms for the hospice benefit, which meant I had to explain and make sure there was a clear understanding of what he was signing. I tried my best to soften the blow while being honest about the content of the documents. When I got to the part of the document about agreeing to seek comfort not aggressive medical care, my friend turned and looked me straight in the eye for what felt like eternity and said nothing. But I got it. I felt it. The stare made me feel very uncomfortable and I interpreted the stare to mean: Don’t try to sugar coat the information. I was too nervous to actually ask what he was thinking and clarify his look. With a stranger that would have been no problem, but this was a friend. It made me very aware how carefully to choose my words moving forward; a straightforward approach became my technique.
On the flip side I became aware as a patient and family advocate, of how we are often treated in medicine. I realize, sometimes, depending on the situation, being vague and not forthcoming with information is NOT unusual. For example, some medical professionals tend to be vague particularly when dealing with end of life issues or a diagnosis they are not completely sure of. For instance you could be told the blood work is normal without a suggestion for other tests, a kind of ‘Let’s wait and see’, while you are wondering why you cannot get any relief. So it’s no surprise there’s a great deal of confusion on the part of both caregiver and the one being cared for when interacting with the medical professionals.
No one expects caregivers to know any of this walking in, especially as medicine and its policies seem to change frequently, so ask, ask, ask until you do understand. It will spare you frustration, anxiety and anger, which can all add up to a big load of stress. All the best!
Sue Collins, RN and longtime hospice nurse is a co-author of Ok Now What? A Caregivers Guide to What Matters (Head to Wind Publishing, 2014