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DEFINITION OF PATIENT AND FAMILY–CENTERED CARE
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The philosophy of patient and family–centered care is founded on the belief that health outcomes are improved by partnering among healthcare providers, patients, and their families. This belief permeates the healthcare system and does not represent a specific therapy that is applied as part of a treatment plan. In the literature, there is no uniform definition of patient and family–centered care. Therefore, it is best described by its fundamental principles: respect and dignity, information control, participation, collaboration, and flexibility.
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Although individual healthcare providers typically are respectful in their interaction with patients, the healthcare system was not designed to afford dignity and respect to patients. The system often values providers’ needs and time over that of patients. Many of the routine policies and practices that seemingly disregard patients’ comfort and dignity are now changing. Treating patients and families with honor, addressing them as they wish to be addressed, and learning about their strengths and human history in addition to their medical history exemplifies this core principle of respect and dignity.
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Implementing the patient and family–centered care philosophy involves transfer of control of information from the healthcare system to the patient and family. As we become a predominantly electronic healthcare system, designers of electronic health records are faced with the decision of who “owns” the information. Patient portals now give patients and families facile access to their health information. Access also includes information regarding the performance of the healthcare system, such as comparative outcome data and patient safety issues.
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Perhaps this principle can best be summed up by the phrase “nothing about me, without me.” Families and patients have the fundamental right to make decisions regarding their care. Therefore, families need to be presented with choices. Shared decision-making is gaining attention as an important aspect of caring for children with chronic and serious conditions. Increasing emphasis is placed on presenting information in a clear manner and allowing patients to make choices when they desire with evidence indicating improved engagement and compliance.
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Many healthcare organizations have found families are a great resource of energy and expertise that often goes underutilized. Most pediatric health systems have developed family advisory councils; some also have advisory councils composed of patients. Families are more frequently becoming members of governing boards and serving on quality improvement teams and facility design teams. In addition, there is support from the literature that parent-to-parent support may be crucial for families whose child has a chronic or serious condition.
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It is important to recognize that illness places a significant burden on families. To truly partner with patients and families, systems must be flexible and address families’ and patients’ unique circumstances ...