80% of Americans would prefer to die at home, and yet 60% die in the hospital, one-third in intensive care units (ICUs). This discrepancy between preference and reality can mainly be attributed to the fact that many patients – even those with multiple serious illnesses – haven’t completed an advance directive.
Furthermore, of the patients who have completed a directive, many neglect to share it with family members or health care providers. The failure to know and follow patients’ end-of-life preferences leads to moral distress among family, inappropriate utilization of hospital resources, and wasted expenditures that don’t serve patient interests.
In partnership with a team led by Susan Kristiniak, DHA, MSN, Associate Director of Palliative Care, we worked to develop an online platform to facilitate the documentation of advance directives.
Through observations and interviews, we identified various points of friction patients encounter while attempting to make their wishes known. We also heard from caregivers about the challenges they face as advocates and the importance of access and the ability to share care plans.
At each stage of development, we engaged patients and caregivers in extensive user-testing and collected feedback.
The Our Care Wishes (OCW) platform went live in 2016. OCW aims to dramatically increase the number of individuals with completed, shared, and accessible advance directives to ensure that patients receive care consistent with their goals.
With OCW, patients can choose, share, and access advance care wishes from anywhere with anyone at any time. The platform also features a unique research infrastructure to support formal evaluation of content, methods of patient engagement, and comparative effectiveness of other advance care planning interventions.
Traditional advance directives are often ineffective in improving patient-centered outcomes at the end-of-life. We plan to leverage OCW’s web technology and research capabilities to develop a web-accessible directive that integrates with electronic health record (EHRs) to transform the effectiveness of advance directives for patients and families.