The Patient and Family as Part of the Health Care Team

Patients are one part of a larger health care machine. Other parts include the family, community, health care team, and payor systems. Each plays a critical role in a patient's biopsychosocial-spiritual (BPSS) health [1-3]. Over the past decade, researchers have found that by applying a more BPSS-focused, systemic, and integrated approach to patient care they are seeing progress in clinical, operational, and financial outcomes [4, 5]. The focus for this article though is on the family. Family engagement in a patient's health care experience offers a pathway toward better quality, more efficiency, and improved population health [7]. While research in this area is thriving, real world stories make the case even more poignant and teach valuable lessons about love, communication, and the healing power of family.

Jean Williams, a native of Sanford, NC, has experienced firsthand the benefit of including the patient's family system in the discussions and delivery of care. Jean's youngest brother, Wesley, battled amyotrophic lateral sclerosis (ALS) for 5 years before succumbing to its devastating effects. ALS, more commonly known in the United States as Lou Gehrig's disease, is a progressive neurological disease with no known cause or cure [8]. Since patients with ALS are on average 47 to 63 years old when diagnosed, it unpredictably interrupts different stages of life, dreams, and possibilities [9]. Patients and their families are often unprepared for what their illness journey will entail and how dramatically the family will need to organize and reorganize to accommodate its progressive and unforgiving path. Despite all that is known about the biological impacts of ALS, the literature is severely lacking with regard to how it impacts not only the patient but the entire family system's BPSS health and well-being [8]. Wesley was one of the fortunate ones who had a health care team that saw and understood the healing properties of including the family. While his family could not cure the dreadful disease, they could ease his BPSS pain through their loving care.

Wesley and his wife, Catherine, were always equally involved in doctor appointments, surgeries, physical therapy, and behavioral health treatment. They were both given the same information and encouraged to make treatment decisions together. Catherine was treated like a member of the health care team and found that it benefited her ability to take better care of her husband as his symptoms worsened. Through conversations with the health care team, she learned how to plan for herself and for their kids. The disease would eventually win but she and Wesley's health care team fought together to ensure he had the best quality of life. As a result, the family built stronger social connections with one another, friends, and their community, and grew stronger in their faith. They adjusted valiantly to the struggle and with each step in the disease's progression, they turned to their support system for general support, assistance with medical treatments at home (feeding tubes, bathroom needs, etc.), and help with transportation to and from appointments. Without their expanding social network, they were convinced the disease would have taken more than just Wesley. It would have devastated their personal, family, and community bonds; their biological, mental, and spiritual health; and their ability to be fully present for the precious moments of his life.

Medical family therapy is a behavioral health field that focuses on systemic and relational health care research and intervention and advocates for this method of engagement between patients, families, and the health care team [11]. Its overarching goals include the promotion of agency and communion [11]. Agency, as evidenced by Wesley and Catherine's ability to make their own decisions about Wesley's health care, encourages patients to become actively involved and have a voice in their health care plan [11]. Communion—the sense of being cared for, loved, and supported by family/support system members—was evident throughout Wesley's battle against ALS with his family by his side [11]. While some families report experiencing centripetal effects (ie, pulling them together) as a result of an illness, others may experience centrifugal effects (ie, pulling them apart) [12]. This family reported experiencing stronger bonds that they may never have had without the health condition [11]. If they had experienced the opposite, behavioral health intervention would have been essential.

As health care continues to move toward greater collaboration between team members and with patients and families, journals like Families, Systems and Health and professional associations like the Collaborative Family Healthcare Association provide invaluable resources for continued education. Health care systems may also benefit from integrating behavioral health providers such as medical family therapists trained to work with patients and families as they navigate illnesses, traumas, loss, and disease, into teams. Systems working together appear to be reporting better treatment outcomes regardless of the disease's progression [13]. The family experience presented here is one example of this phenomenon.

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