Really Listening to What Patients Have to Say

At our recent ESRD Network 18 Quality Conference, Libby Hoy, Founder of Patient and Family Centered Care partners, stated that our most under-utilized resource in health care today is patients and families. Libby has an extraordinary story of patient advocacy both as a caregiver and a patient herself. No one knows the health care system quite like our most fragile populations who are hospitalized often or need regular dialysis for the rest of their lives to survive. This was underscored again at this conference as seven very engaged patients who are at different stages in their health care journey with ESRD presented to the audience. Led by David Rosenbloom, Network 18 Board member, each patient panelist recapped their health care experience and responded to several questions about how we can provide care that is more patient centric. Consider some of their inspiring comments below as you work with patients:

• 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.”