Advance Directive Documentation Among Adult Day Services Centers and Use Among Participants, by Region and Center Characteristics -The National Study of Long-Term Care Providers, 2016

Questions for Jessica Lendon, Health Statistician and Lead Author of “Advance Directive Documentation Among Adult Day Services Centers and Use Among Participants, by Region and Center Characteristics -The National Study of Long-Term Care Providers, 2016”

Q: Can you describe what an advance directive is?

JL: An advance directive is any written statement that expresses a person’s health care preferences in the event that she or he are unable to make decisions. The types of advance directives include documents that designate a health care decision maker, proxy, or surrogate, do-not-resuscitate orders, physician or medical orders for life-sustaining treatments, and living wills.  Advance directives can be completed by adults at any age and any health status.

Q: Why did you decide to focus on advance directives in the United States?

JL: Advance directives are an important component of care planning for individuals with serious illnesses who require long-term care services and supports or need end-of-life care, which may improve quality and satisfaction with end-of-life care. Advance directives has been examined in many healthcare settings in the United States, but has not yet been studied in adult day services centers (ADSCs).

ADSCs are not federally mandated to provide information about advance directives to users or to maintain documentation, like other long-term care settings. ADSCs are licensed by a variety of requirements at the state level.

Q: How many adult day service centers maintain documentation of advance directives?

JL: An estimated 3,300 (78%) adult day services centers reported that they maintain documentation of advance directives in their participants’ files.

Q: How did the findings vary by region?

JL: A larger percentage of adult day services centers in the Northeast reported that they maintained documentation and had participants with an advance directive, compared to the other regions. The West had the lowest percentage of centers that maintained documentation and prevalence among participants.

Q: Is this the most recent data that you have on this topic and will you be continuing to examine in future data?

JL: Yes. This is the most recent data on advance directives in adult day services centers. My co-authors and I are preparing another report, which will be a more in-depth examination of the relationship between policy, practices, and prevalence of advance directives in adult day services centers in 2016. The 2018 National Study of Long-Term Care Provider’s survey of adult day services centers also includes questions about advance directives, which will be analyzed in the future.

Q: What is the take home message in this report?

JL: The majority of adult day services centers document advance directives, which may be an important part of ensuring individuals’ end-of-life wishes are fulfilled, and only 38% of participants have a documented advance directive.

This report shows policy-relevant differences regarding advance directives, for example, adult day services centers that are Medicaid licensed are more likely to maintain documentation and have a larger percentage of participants with advance directives.