A Framework for Care

As a child, Hilary Siebens watched and cared for numerous animals and plants. Between college and medical school, she ran a clinic in a remote village in Ethiopia, where, by observing the people, she learned how to navigate an unfamiliar country and culture.

When she entered clinical work, Siebens applied those early lessons in observation to create what has become her signature system for organizing care for patients.

Siebens trained in internal medicine at The Johns Hopkins Hospital, where one of her key mentors, Arthur Siebens, or, as she knew him, Uncle Art, would help establish the Department of Physical Medicine and Rehabilitation. A geriatrics fellowship at HMS followed, sparking an interest in geriatric rehabilitation. A second residency, this time in physical medicine and rehabilitation, brought her an understanding of how complex the care of older adults and people with disabilities could be.

Shortly after this training, Siebens began developing a framework she could use to care for her patients and, equally important, teach residents. The framework “looked at four domains: a patient’s medical issues, their cognitive and emotional makeup, their functioning and movement, and their physical and social environments, including family, home, and community.”

The idea of involving family in a patient’s care was born of personal experience. When Siebens was 13, her father died of cancer. His death caused significant suffering for her family, she says; her siblings and her mother had to cope with the emotional effects of their loss without help from medical professionals. “I think that experience was a defining influence.”

As Siebens worked to finalize her patient-care framework, including conducting research that provided key insights for her model in older hospitalized patients, she also investigated the influence of mental models on organizational and systems behaviors and how these affect patient care. The latter work, she says, “clinched it for me. We need a broader mental model of patients and have health care address that.”

After a period in Southern California, Siebens returned to Boston and added to her credentials, serving as an HMS lecturer in physical medicine and rehabilitation at Spaulding Rehabilitation Hospital and a primary care geriatrician at Massachusetts General Hospital. She then headed back to California and began a push to fully develop her framework. The current version is now augmented by research-based self-care notebooks to help patients manage their own health care. Increasingly, her system of care is being adopted in clinical settings, including telehealth care management for individuals with Parkinson’s.

Reflecting on the people who supported her idea along the way, Siebens is quick to call out two mentors at HMS: clinical physiologist Mark Altschule, MD ’32, and disability researcher Lisa Iezzoni, MD ’84. She hopes her work might be incorporated into medical school curricula, especially now, when concepts such as social determinants of health are being talked about commonly and broadly.

Susan Karcz is senior editorial coordinator in the Office of Communications and External Relations at HMS.

Image: John Davis