Advanced Illness Support in Massachusetts: From Perceptions to Practice

Abstract

While it is a good thing that modern medicine allows people to live longer and postpone disability due to chronic illness, there has been a relative lack of focus on how to support patients as their underlying illnesses become the source of biological, psychological, sociological, and spiritual (bio-psycho-socio) suffering, and impacts quality of life. One type of program that is designed to address these needs is known as advanced illness support (AIS). Although there is growing need for AIS programs, they remain difficult to access for the more than forty million Americans with serious illnesses and functional dependency. This Doctoral Project focused on evaluating a home-based palliative care pilot called the “Advanced Illness Support Program” (AISP) that was specifically designed and implemented by Blue Cross Blue Shield of Massachusetts to support the commercially insured population in Massachusetts with advanced illnesses. The evaluation sought to better understand the needs of this population, the challenges of identifying and recruiting appropriate patients into the program, and, ultimately, to continue to improve the design of the AISP program. The framework of Adaptive Leadership was used to conceptualize, study, and evaluate the pilot to address the challenges and propose new areas for research and practice. The evaluation included in-depth qualitative interviews with pilot program stakeholders to assess barriers, challenges, and successes of the pilot. The issues identified during the pilot require a mix of both “technical” and “adaptive” solutions. The pilot highlights the adaptive challenges of having a clear and consistent method of defining and identifying seriously ill patients, and an understanding of the holistic services that patients, caregivers, and families need. Many technical solutions can help improve advanced illness support, but the work will require mobilizing frontline clinical staff to test out iterative improvement processes to refine the program, including developing more effective patient identification and outreach approaches. The lessons learned from the pilot can help to guide the continuing efforts to care for this vulnerable population and provide insights into next steps in the evolution of the Advanced Illness Support Program – and community-based palliative care services in general.