Advance Directives Information Delivery in Medicare/Medicaid Funded Agencies: An Exploratory Study

Background and Purpose: Advance directives (ADs), such as a Living Will and a Durable Power of Attorney for Health Care (DPAHC), are legal documents that allow people to express their medical care preferences in the event that they become unable to make decisions or advocate for themselves. In an attempt to encourage citizens to plan their end-of-life care to protect their autonomy, Congress passed the Patient Self-Determination Act (PSDA) in 1990. Under the PSDA, all Medicare and Medicaid funded institutions, such as hospitals, nursing homes, hospice agencies, and home health agencies, are required to provide patients with written information on ADs at the time of enrollment. However, there is no universal procedure that is used in these agencies. It is often unclear who provides and explains information on ADs to clients in an agency, how the information is delivered and explained, and what materials are used when explaining ADs. This study aimed to understand the implemented procedures of the information delivery of ADs in Medicare/Medicaid funded institutions.

Methods: The study employed a qualitative case study approach. A purposive sampling method was utilized to invite study participants who were identified as a primarily responsible person for providing information on ADs in Medicare/Medicaid funded agencies. Semi-structured, open-ended interviews were conducted with nine staff from different agencies within the Northern Virginia area in June 2015. Each interview took approximately 30-60 minutes to complete. Some examples of guiding questions utilized by the researchers included: “What is your experience with advance directives here?” and “What has your protocol with advance directives here been like?” Interviews were recorded and transcribed verbatim. Data collection and analysis were done in an integrated recursive process of collecting, coding, and analyzing data using constant comparative analysis with memoing interwoven throughout.

Results: The study found notable variations in the procedure related to the AD information delivery. Three overarching themes were identified: Staff Interaction (the involvement the staff had with their clients and how that affected the process of completing ADs); Organizational Procedures (the method of providing information, completing forms, following up with clients, and any complications faced in the process); and Staff Assumptions/Observations/Perspectives (personal reactions or biases that staff displayed while discussing their procedures, including how staff feel about the process and how administering ADs is changing in the field currently or where they believe changes should be made). The specific challenges identified were lack of training, variations in AD forms, identifying/verifying the AD information, and educating clients and their families.

Conclusions and Implications: Social workers and other organizational staff lack a consistent procedure for the information delivery of ADs in Medicare/Medicaid funded institutions. Providing standardized educational training on various types of AD forms and communications with clients and their families will be useful to tackle problems that were identified in this study.