By Lee Vander Loop
CP Family Network Editor

When you read the words “Patient-Centered Care,” what comes to your mind? When I first encountered the phrase, I was confused. Shouldn’t all medicine be ‘patient-centered’ since it is about the patient and, if this is new, what was the approach before?

CP Research Study Seeks Parents and Caregivers from CP Community

These questions need answers. That’s why I was very excited about the nationwide study about patient-centered care. CPRN and CP NOW Foundation are embarking on a project funded by the Patient-Centered Outcomes Research Institute (PCORI) to help develop a community of people committed to the principles of patient-centered research for CP. Research CP is an educational series and agenda that will culminate in a one-and-a-half day workshop in Chicago that will bring together people from the CP community with clinician researchers to set a research agenda for cerebral palsy.

Communication is Key with Doctors, Patients and Families

In 27 years of caring for my daughter with CP, I never heard the phrase “Patient-Centered Care” mentioned in conversations with a physician or clinicians. As I proceeded to research the topic, instances of doctor appointments with my daughter came to mind. As I reflected back on my 27 years of interactions with the medical community, I could easily identify appointments that reflected a ‘patient-centered’ approach and those that did not.

I was amused to discover that, although I was unaware at the time, many times I had forced the physician to have a ‘patient-centered’ approach in their interactions with me and decision-making issues regarding my daughter, through dialogue and communication. I had educated myself on my daughter’s multiple medical issues and easily communicated my concerns and questions to them.

Focus Turns Toward Patient-Centered Care in Medical Community

Before this initiative became a focus in the medical community, medicine was considered ‘physician-centered’ and doctors practiced a ‘community approach’ with little or no regard to a patient or parent’s individual needs or wishes.

The IOM (Institute of Medicine) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Picker’s Eight Principles of Patient Centered Care defines the primary aspects of patient-centered care.

In the article ‘The Values and Value of Patient-Centered Care’, published in the Annals of Family Medicine, the author describes patient-centered care as a quality of personal, professional, and organizational relationships. I consider the most important word in that phrase to be ‘relationships’.

When meeting a new physician, there’s always an initial awkwardness and communication challenge. Since the foundation of ‘patient-centered care’ relies on communication and mutual respect between the child’s caregiver and physician, it’s imperative that these initial hurdles be overcome.

Parents Need to Embrace Vocal Role with Their Child’s Physicians

As parents and caregivers to special needs and often non-verbal children, we must be the voice for our children. We must establish a rapport with the physicians and clinicians who will aid us in the understanding; decision-making and resolving of the medical challenges so many children with CP face.

With the time constraints faced by physicians, it can be a challenge to develop the dialogue needed to establish the partnership that is the basis of a patient centered approach. Parents and caregivers can help this process by researching and obtaining as much information as possible about their child’s condition. Be prepared. Make a list of your questions and concerns. Don’t be afraid to ask questions! Physicians are not mind readers. It’s the parent’s role to educate the physician on their child’s individual needs. You are the most vital part of the team when making decisions regarding your child.

Throughout the years of caring for my daughter and interacting with the large array of doctors and nurses that helped me maintain her quality of life, my relationship with her primary care physician and specialists evolved. Our relationship had become not just one of partnership and solidarity, we had become family and, when it became evident that the end of my daughter’s life was near, they wept with me. They were my heroes and will be for the rest of my days.