Recently, I was watching The Wonderful World of Disney: Disneyland 60th. It was a grand celebration in a way only Disney can do. Towards the end of the special, Neil Patrick Harris donned a pair of mouse ears, took a selfie, and posted it on Twitter with #ShareYourEars. Reason being, Disney will donate $5 to the Make a Wish Foundation for each picture posted, up to one million dollars by March 14th. So I immediately started twittering. Needless to say, it wasn’t too difficult to do.
I’ve been to both US Disney parks...well, a lot...and I have my share of various park anniversary mouse ears, Year of a Million Dreams mouse ears, Santa mouse ears, stocking hat mouse ears...it’s a long list. During my many happy adventures, I have often seen families with the Make a Wish sticker. It’s not the big PR event that the Nelly Negatives expect it to be, just a family with a sick child, trying to forget the realities of the real world and immersing themselves in fantasy. Trying, if just for a moment, to create “normal.”
The Make a Wish campaign made me think of patient engagement because Disney epitomizes it. I know, I know, they don’t treat patients, but they have the two most important aspects of patient engagement—a sick patient, and the desire to make them happy. Isn’t that the root of patient engagement?
What if your patients left your office with smiles as big as the Make a Wish foundation recipients have when they walk onto Main Street, USA?
So where do you start? For goodness sake, start by not treating them like sick people. Yes, they're coming to you for treatment, but they aren't a diagnosis, an infectious disease, or a terminal illness; your patients are people first and deserve to be treated as such. These people are scared, probably terrified; seeing them may be business as usual for your staff, but it certainly isn’t for the patient. Give them your full attention for as long as they need it. If you’re too busy, get someone like a nurse navigator or a counselor to talk them through all their questions.
Know who you are seeing, not the ICD-10 code for their ailment.
Acknowledge the caregiver. So much of the focus during an illness is on the patient, as well as it should be, but a caregiver needs support too. Who is looking out for the mom sitting in the cancer ward watching chemo course through her child’s veins? How much effort does it take to bring that mother a magazine, glass of water, or relieve her so she can go to the restroom? Caregivers need to know they are not alone.
Communicate with everyone involved in the diagnosis and care for the patient (within the HIPAA laws of course). It’s important to be honest and positive, but in a way a lay person can understand. Friends recently asked me if having chemo before a mastectomy, rather than after, would get rid of the tumor and possibly allow her to avoid surgery. I’m not a doctor, but I am quite certain that isn't how it works. However, it seems that what was inferred by the doctor, or what she understood. Either way, there was a break in the communication. Don’t send someone away with false hope, only to crush them later.
A doctor once put her hand on my knee and said to me, “You’re going to die someday, but not from this.” It may sound harsh, but she knew me enough to know it was the fire I needed. She was right.
A little humanity will go a long way. A dear doctor friend of mine believes in placing her hand over patients when delivering scary news and is known for hugging them after excellent news. Of course, each situation should be evaluated case by case, but a little human touch can go a long way.
And remind them there is more misinformation on the Internet than viable information. Give them peer-reviewed articles and access to sites that have accurate and updated information. Or better yet, discourage them from doing a Google search on brain tumors!
When you walk into the room of your 30th sick patient of the day, ask yourself this, “How would this interaction change if this person was my child or parent?”, then adjust accordingly.
Off to Tweet.