Recently, I was invited to a meeting of experts to discuss how best to improve patient and family engagement in healthcare at a system level.
As I walked in to the meeting room, I was pleased to see I was slated to sit next to the meeting co-chair, who I had met previously and wanted to get to know even better. As I walked out to stow my luggage, one of the meeting coordinators approached me and let me know that they were moving me because another individual required access to a plug (which happened to be right behind the seat I was initially assigned to). Oh well I thought … I will simply connect with the co-chair later in the day.
Interesting how fate works.
Shortly thereafter I realized I would be sitting next to a brilliant patient advocate, who also happens to have a chronic degenerative neurological disease. (I will refer to him as Neal.) And throughout the day, Neal showed all of the following symptoms of the disease:
- Rigid muscles
- Impaired posture and balance
- Loss of automatic movements
- Speech challenges
As the meeting began, I became aware of Neal’s breakfast. How he appeared to struggle with his fruit. How the juice cup in his hand flailed precariously close to being dumped on him, on me, and/or on the table. And I realized I had no idea how to help. I had no idea whether Neal wanted help. Would I offend him by offering help? What was Neal’s preference?
As the day went on, Neal confided in me that he was getting tired and I noted his symptoms worsening. He stood up abruptly and his chair, which was on wheels, flew backward so I grabbed it and held it for him. I saw him stumble and thought he would fall so I reached out and held his arm. Neal brought out a pill container and I thought he was having some difficulty extracting his pills, but decided to hold off at first on offering assistance. Again, I wasn’t sure what he would want and whether he was finding my persistent questioning, e.g., “Can I help you?” “How can I assist?” “Can I get that for you?” bothersome. He retrieved his pills on his own. He then began to lean toward me and I asked again “can I help you,” but received no answer.
A bit later Neal handed me a can of soda and asked me to open it for him, which I was happy to do. And yet as I did so I noticed he also had a cup of ice and based on what I was witnessing I was thinking there was no way he would be able to pour the drink into his cup without spilling. And as I was about to ask him if he wanted me to do it (feeling more comfortable after a number of hours together), Neal leaned over to me and asked me to do so for him.
It’s interesting what thoughts go through your mind during these times.
Feeling that at any moment I could be wearing Neal’s drink, I made a pact with myself that if it does happen I will not show any manifestation of being startled, I will not immediately get up and go clean my suit, but rather I will take it in stride and ensure that I do not cause any sort of scene which would adversely impact Neal. Or, in other words, I will do my best to treat Neal how I would want to be treated in lieu of not truly knowing Neal and his preferences.
At the end of a long day I noticed Neal circling me. He came near and then circled away. He came near and then stumbled (and I supported him) and then circled away again. He then stopped nearby and we made eye contact and he simply said, “Tom, I want to shake your hand,” which we did and I responded, “Neal, it was so great to meet you.”
During a long commute home I continued to process these events.
I was blessed to be sitting with my new colleague. I was fortunate to be further reminded throughout the day of how important it is to develop relationships, to develop trust, to share openly and honestly, and to understand one another’s whole story, preferences, goals, desires, and so much more … and especially so in healthcare. I learned that the more I got to know Neal and understand his preferences the better I felt and the better I was able to respond accordingly and meet his needs more effectively.
Want to improve the healthcare system from a systems perspective?
Develop systems which allow for time, continuity, relationship, trust, authentic sharing, the telling and hearing of the patient’s whole story at each healthcare encounter. Create system change which positions clinicians to use tools such as emotional intelligence and motivational interviewing to ensure optimal sharing and comprehension. And not only collect data from these encounters, but rather turn the data into information and the information into wisdom by co-creating with the patient and family care pathways that are 100 percent aligned with the now understood preferences of the patient. Lastly, develop systems which track progress toward achievement of the co-created care plan (measure the impact).
If we are going to truly
- engage patients and families,
- improve patient satisfaction, engagement, activation,
- improve clinician satisfaction and retention,
- ensure resources are not wasted (save healthcare dollars), and
- profoundly change and improve the healthcare system,
then we must.
Yes, Neal, it was so great to meet you. Thank you for allowing me the opportunity to learn from you.