Guests on People’s Health Journeys

As I learn more about and am sought out more as an expert in patient engagement, empowerment, and activation, I struggle to respond to the health-system centric definitions given by people thinking they are patient-centric or want to become patient centric. Stuff like, ‘How do we make patients feel like they were included in decision-making.  I say, “wait a minute, think of it as if you were the guest in patients’ health care journeys.”

I first thought about being the guest in someone’s health care journey 25 years ago when I worked with my sister-in-law, Peggy Boland, a staff nurse in an Intensive Care Unit in Cobleskill, NY. She inspired and taught me much. She would knock on the doorway and ask if she could come in, even if the patient was unconscious. She’s say, “I’m going to turn you now. Ok with you?” She’d greet every person who came into a space she was in. She respected thresholds and personal space.  A very busy person, caring for many people, she’d ask, “Is there anything I can do for you?” and do it or say, “I’ll be back in x minutes and do that.” She always made it her business to know family members and find out who would be the care partner in the ICU and at home. She included them in all activities, teaching how to help move, feed, and toilet the patient. “It’s good for you to know this, it’ll be easier than this when you get home, but harder than before you came in. Any questions?” She was proactively curious and helpful. She explained and taught all the time. At the beginning of each shift Peggy would meet with the patient and care partner, “Here’s what I have on my list to accomplish today. What’s on your list?” Then, “Ok, let’s do this, at that time.” Collaborative care planning.

Peggy would say, “the next stop on your journey is the Step Down Unit.” Invariably they would want to stay in the ICU so Peggy could be their nurse. “Thanks for that, but the system works like this.” Educating about the system. “Let’s think about what you will need to be able to do when you get home.” Often, patients and their care partners were too overwhelmed to begin thinking about home. “Well, you’ll need to get out of bed, go to the toilet, and eat and drink. Let’s set some goals so you can.” Peggy didn’t do shift change in the nurses’ station, she walked with the oncoming nurse from bed to bed, introduced the oncoming nurse to the patient and family, reviewed the accomplishments and challenges and listed next steps. She ended with, “Did I get that right? Anything you want to add?” OK, bye, we had a great day together. You’re in good hands now.” Respect that health is a journey, prepare for that journey and communicate during the hand-off and transfer.

Phew, I ‘d forgotten how much I’d learned from Peggy.  Thanks Peg.

I feel like I’m only touching the nuances of being a guest in people’s health journey. What examples do you have?


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