- Know me. Do you know my spouse’s name? My grandchildren’s names? Where I am going on vacation? What is important to me? If you know something about me, I will feel better about the care I am receiving from you.
- Don’t just give me a packet of information; explain what you are giving me. Don’t ask me to sign off on something I don’t understand.
- Knowledge is power, but not until you use it.
- Help me help myself.
- Ask me, “What can I do for you?”
- Patient centeredness = what the patient wants. Discuss my treatment options with me even if it is just “protocol.” I know what my body needs.
- Empathy is patient-centered care, understanding that my life is in your hands.
- Speak to me kindly and positively. I will believe what you tell me.
- All of us are different. We learn differently and have different levels of engagement.
- One peritoneal dialysis patient said: “I am a unicorn; I am not often seen but I do exist.”
Libby Hoy cautioned everyone not to underestimate the power and resources of the patient and their families. Do not assume patients who are busy would not be willing to elevate their level of engagement around issues they are passionate about. Patients can often see simple and inexpensive solutions.
We encourage our dialysis centers to include patients in care plan meetings. This concept is slowly becoming embraced as we overcome questions or hurdles, such as: What about privacy? What if they say something we don’t like? What if including a patient makes our meetings go longer? We are more aware of the importance of including the patient in the design of any intervention that might impact them, but we have a long way to go.
A mantra we have embodied at the ESRD Networks to describe how we want to empower patients is: “Nothing About Me Without Me.”