The Rheumatologist—December 19, 2013
by Jillian Rose, LMSW
Chronic rheumatologic diseases such as lupus and rheumatoid arthritis are characterized by extreme fatigue, pain, and unpredictability, often causing major disruptions in emotional, social, and physical well-being. Social workers in healthcare are experts on the impact of a health crisis on individual and family functioning. Their skills include the ability to assess disruption, mobilize problem solving, and help return the patient to an adaptive level of functioning. Caring for the whole person is integral to the concept of patient centered care; these concepts are the cornerstone of the social work role on the interdisciplinary team.
Patients are often challenged by the complexity of chronic illnesses. They can find themselves paralyzed by unpredictability, frustrated by symptoms, and overwhelmed by the many dimensions of management. The disruption and fragmentation that a chronic illness brings can touch every aspect of their life.
Patients turn to the social worker to seek out guidance and share vulnerable moments without the fear of being judged. This helps to engage patients in their own care, motivating them to become active partners in the process as they seek to enhance their quality of life. Monica Richey, MSN, ANP-BC/GNP, Lupus Center nurse coordinator at Hospital for Special Surgery in New York City, summarizes the benefits to both nurses and patients. “The rewarding part of working with social workers is not just how they uncomplicate my life as a nurse,” she says, “but how they make a friend out of every patient.”
“The medical part of the care of our rheumatic disease patients is often the easy part. What is difficult, and the reason we doctors stand in awe of our social work department, is the finding of access to medications, solving of social problems, the support systems, the immense paperwork, the outreach programs, and sometimes just being a friend to our patients,” says Michael D. Lockshin, MD, director of the Barbara Volcker Center for Women and Rheumatic Disease and co-director of the Mary Kirkland Center for Lupus Research, both at Hospital for Special Surgery.
Communication is a vital component of patient-centered care. Social workers help optimize physician–patient communication, and communication with the entire medical team; in turn, this can minimize patient and family concerns.
“I’ve found our social work staff to be incredibly experienced and resourceful, finding clever solutions to problems that I would never have thought of myself. Between time constraints placed on doctors and gaps in medical school teaching when it comes to some practical issues of taking care of the ‘whole’ patient, our social workers have really provided an extra level of care and support that I am sometimes not capable of,” notes Alana B. Levine, MD, assistant attending physician and clinical associate at the Barbara Volcker Center for Women and Rheumatic Diseases at Hospital for Special Surgery.
Addressing the Emotional Components of Care
The emotional dimensions of a chronic illness are often overlooked in the context of a medically centered care plan. For example, fatigue, a feature of many rheumatologic illnesses, can lead to frustration and a sense of helplessness, anger, fear, hopelessness, and defeat. This can often lead to low self-efficacy, compromising a patient’s competence to manage their illness.
“At critical times in a rheumatology patient’s life, the social worker becomes the most important part of the healthcare team because they are uniquely able to integrate medical, financial, emotional, and practical issues in a manner that can quickly and effectively facilitate a patient and [his or her] family’s ability to navigate through a crisis and an increasingly insensitive and complex healthcare system. At other times, they are as important a part of the care of patients as the physicians,” says Stephen A. Paget, MD, physician-in-chief emeritus and rheumatology leadership chair at Hospital for Special Surgery.
The Anchor of Culture
Several rheumatic illnesses, such as lupus, disproportionately affect women of color. Culture plays a major role in how we define, relate to, and treat illness. Culture can color a patient’s values about medicines and certain treatment modalities. The social worker on the team can often unearth this important information and explore its impacts on patient care and disease management.
Social workers are an integral part of the rheumatology interdisciplinary care team. Their skill set lends itself to fostering invaluable trusted relationships with both patients and the care team, which truly fuels patient-centered care. These enduring relationships create a sacred space of trust that serves as a portal for activating patient empowerment, building resilience, optimizing communication, and cultivating self-determination, which powers patient engagement and ultimately optimizes the best patient outcome.
This story originally appeared at the-rheumatologist.org.