Educating caregivers is such an important part of what we do as clinicians, and we all would like to think that we are good at it – that the families leave their training/education sessions feeling empowered, well informed, and ready to care for their loved one.
Recently, I had the opportunity (well, it really was not an ‘opportunity’ it was more of a ‘my life got turned upside down and I had no choice’) to experience what it is like to have a family member in the hospital, and need education from the care team. It made me realize that educating families/caregivers is not something we can take for granted- especially as healthcare workers ourselves.
My father was having trouble breathing, and long story short, went to the ED in the middle of the night (because- why go during the day when things first start giving you a problem?!) with my mother. Unfortunately, due to the current pandemic, only one person was permitted to be with him while he was in the ED, so I was getting of information secondhand from my mother (who is a retired schoolteacher). I got bits and disjointed pieces about what was happening, and what tests were being performed.
At one point in the night, she called me very upset as a doctor had told them that my father had a “lung mass and stage 4 lung cancer with mets to the liver.” As a family member, this is very upsetting hear, but as a healthcare professional, this is mortifying to hear. A variety of thoughts swarmed through my very tired mind at 3am – “Wait, what?! How did they do a biopsy at 3am? What did they see? How do they know there are liver mets? Does this doctor have a special CT scanner that says all this?”
I was angry, to say the least. How dare the doctor say such a thing to my very impressionable parents when I know for sure that they did not have the diagnostic studies to back any of this up?
Throughout his hospital stay, information continued to be presented in a disjointed and incomplete manner. The pulmonologist said something different then the attending physician, who said something different then the cardiothoracic surgeon. Making the waters muddier were the ever present medical residents from each department. They were not able to answer questions effectively and really lacked ‘big picture’ thinking. His discharge instructions were unclear, and didn’t list any of the procedures he had done while in the hospital, and had some vague follow up appointments listed.
This got me thinking….
The entire experience (that lasted a very long 14 days) really got me thinking – am I effective at educating patients, families and caregivers? Do I provide the information needed in a clear, succinct manner? Do people leave interactions with me more confused and frustrated than before? In light of my recent experience as the ‘family member’, I have compiled a list of five things to consider when providing patient and family education:
As clinical practitioners, we need to consider when to provide critical information. Dropping a bunch of ‘knowledge bombs’ during a chaotic and emotionally charged time (i.e., at 3am in the ED) isn’t going to be effective or comforting. Patients and their families are going to hear bits and pieces of information, and only take away the most emotionally charged portions of it such as “cancer”, “mass”, and “surgery.”
Also, to go along with time, we need to consider how much time we have to talk with the family when delivering important information. You just cannot ‘dump and run’ important information. It leaves both the patient and family feeling upset, confused, and not supported. Time is always of the essence for all of us, but remember that those people have probably been waiting to speak with you all day – literally all day. They have done nothing else but get to the hospital early, and sit around and wait for YOU. Give them the time and respect they deserve.
2. Point Person.
We also need to consider who the family ‘point person’ for education is. If someone requests you call their daughter, then call their daughter. The patient’s daughter may have a better grasp on what is happening, and be able to present the information to the rest of the family in a way that makes sense to them. I know having to make phone calls in the middle of your day can disrupt the flow, but keep in mind the family ‘point person’ may have information or questions that will better assist you with developing and managing the plan of care.
Take a moment and reflect on how you are choosing to present the information to the family. Are you using family friendly, non-technical language? Are you using metaphors or visuals that can assist with understanding? MAKE IT RELATABLE! It’s not always easy to come up with a metaphor, but remember that the health literacy of the patient and their family may be low, and you need to meet them where they’re currently at. Just because people don’t understand your complicated medical jargon, doesn’t mean they’re less intelligent, or less concerned – it just means that they’ve probably never had to know these terms, and don’t know what to ask.
4. Follow up.
Check back later to ensure understanding and carryover of what you presented. It takes a lot of people time to sit with information, and formulate questions. Going back to my previous point, some people will not know what to ask until they have had a moment to either do some research, or let it sink in for a while. I’ve heard time and time again that healthcare professionals didn’t come back around and even give patients and their families the opportunity to ask follow up questions.
Make sure you and your colleagues are on the same page, and send the same message to the patient and the family. Nothing is more frustrating them hearing different things from different medical professionals that contradict one another. Interdisciplinary communication is incredibly important. How can the patient and family trust you with their medical care if they cannot even be bothered to talk to each other? If the family asks a question that would be better answered by one of your colleagues, please refer them to that colleague. Don’t make assumptions about other specialties, and their current plan of care. Educating caregivers is ALWAYS a team effort!
The bottom line is that it comes down to how the patient feels about the information you are providing them. We need to remember that as professionals, we are here for our patients. We’re not here to make ourselves look good – we’re here to help other people get better, and get back to doing the things they want to spend their time doing.
My parents still talk about the ED doctor, and how what he said made them feel. They both have accepted that the diagnosis may be accurate, but choosing to deliver such information when there were still so many unknowns is upsetting. We need to empower our patients and their families to manage their own conditions, and that can only happen with the good, solid, well thought out educating of caregivers.
To read about an informative model of communication developed with educating of caregivers in mind, check out this article from the Journal of Quality and Safety in Healthcare.