As an advisor in patient and family-centred care, I have noticed sometimes there is a degree of fear surrounding bringing patients and families into the design, planning, delivery and evaluation of health care. The fear seems to be that because patients and families do not understand the system or practice, they will ask for things beyond our control as health-care workers. While it’s true that sometimes we do collaborate on possibilities to dream big, patient and family advisors understand clearly outlined limitations.
Recently, an advisor at the orientation for the Patient and Family Advisory Council (PFAC) for the Calgary Cancer Project asserted: “We are experts in our experience and ourselves but we acknowledge your expertise too as doctors, clinicians, architects, operational managers and engineers.” For days afterwards, I shared that message with my team saying, “It’s all about the synergy of expertise!”
For our patients and their families, small and thoughtful things can make a big difference – a well-placed private alcove, a place to have their questions answered, someone holding the elevator door open or wayfinding that helps them get to an appointment on time. What I have noticed is that the adjustments that are needed to the way we do things are not necessarily about “changing the world” or something big and unmanageable.
Here is a beautiful patient story recently shared in celebration of Patient and Family Centred Care Week that I feel illustrates my point:
“My name is Cheryl. In 2007, I was diagnosed with small cell cancer in my right parotid gland. I was told many, many times how rare this diagnosis was. I felt like a freak.
I want to share with you a brief and meaningful moment that occurred while I was waiting for my radiation treatment one day. I can’t recall which day it was; somehow they all blur together. Day 19? Day 23? I don’t know and it doesn’t matter. What does matter is that I was sitting alone in the waiting room on an uncomfortable chair and I was so tired. It seemed like every cell in my body was exhausted. My eyes wouldn’t stay open and I was slouching, my head hanging down.
I was waiting, patiently.
I was bracing myself for having my custom-made, claustrophobia-inducing mask placed over my face and neck, for being clamped down onto the table, for the whirring sound of the equipment, and for the disembodied, distant voice on the intercom telling me what was going to happen next. No one else can be in the radiation therapy room with you in the few short minutes it takes for the treatment to occur. No one can sit there beside you and hold your hand.
And as I sat in the waiting room, sinking deeper into my chair and deeper into my sadness, I felt a hand on my shoulder. A hand reached out and touched me. And that brief touch told me that I was seen. That human contact told me that my suffering was visible and acknowledged. That warm palm and those five fingers on my shoulder said that I was not alone and that there was some level of understanding between us, that what I was experiencing was truly scary and difficult. That touch was encouragement, hope and compassion.
I looked up to see my radiation therapist. I think, maybe, I managed to smile. I know that she did.
It is important to be seen, to have our experiences witnessed by others, to know that we do not suffer alone.”
–Shared by Cheryl H., patient advisor, Calgary Cancer Project Patient and Family Advisory Council
I bet that radiation therapist touches and smiles at her patients every day.
It was not an extraordinary act. She may not even remember doing it. And she may never fully know the impact of these small moments, or her impact on that patient.
I think all of us are change agents and, when we shift our perspective to acknowledge the power of the small, simple moments, we can create with each other, then we really do have the power to change the world.
