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Research Highlight

Shared Decision Making in the Emergency Department for Veterans Living with Dementia

It is currently estimated that about 10 percent of the Veteran population over 65 years of age has Alzheimer’s disease or Alzheimer’sdisease-related dementias, and as the general Veteran population ages, this number is expected to increase by 22 percent in the next decade.¹ In the general population, about 40 percent of persons with dementia have at least one emergency department (ED) visit per year, and about 30 percent are hospitalized at least once. Overall, persons with dementia have significantly more acute care utilization compared to their counterparts without dementia, and they have almost twice as many ED visits, more costly ED visits, more frequent hospitalizations, and longer inpatient stays. ED visits and hospitalizations often represent sentinel events for persons with dementia, with risk of significant negative downstream impacts on quality of life, including functional decline, increased risk of long-term care placement, and mortality.

ED care for persons with dementia can be challenging because these patients have more co-morbidities and medications comparedto their counterparts without dementia, and frequently find the ED environment over- stimulating and disorienting. In many cases, they may not be able to provide a clear story of what brought them to the ED, in which case ED providers often rely on collateral information from care partners or anyone available. This can still pose challenges to their care and disposition, as barriers to good communication – such as care partner availability, reliability of sources, language barriers, and time constraints – are common. Without a good understanding of a patient’s baseline mental status, ED providers have limited information about whether a patient is having additional cognitive dysfunction, which might warrant further testing or monitoring in the hospital if the ED results do not clearly demonstrate a need for admission. Limited collateral information on cognition and recent history can lead to more ED testing and hospitalizations.

Admission decisions in the ED are critical and costly. For serious illnesses requiring urgent treatment that can be done only in the hospital, such as a myocardial infarction needing cardiac catheterization or sepsis requiring IV antibiotics, the decision to admit a patient is straightforward. However, in most cases, this decision is not so clear.

When considering admission to the hospital during an ED visit, a provider must balance the risk of hospitalization against the risk of inappropriately discharging an older patient; the latter risk includes a potential return ED visit and hospitalization, worsening morbidity, mortality, and poor clinical and patient experience outcomes such as trust in healthcare staff or satisfaction with care. As such, the ED provider’s decision to admit the patient to the hospital or discharge them is critical. This “disposition” decision is widely considered to have enormous implications for patient experience, outcomes, and costs of care. Significant variation exists in ED admission rates, by region, EDs, and providers, which suggests that the disposition decision may be partially discretionary. This type of variation represents an opportunity for improving experiences of healthcare delivery.

Shared decision making is an important emerging tool in the ED setting. When more than one reasonable option exists regardinga healthcare decision, such as the decision to admit or not, shared decision making (SDM) can be a strategy to facilitate conversations between patients, care partners, and providers. The purpose of SDM is to ensure that patients and care partners are informed and meaningfully involved in decisions about their care, including testing and treatment options, and that these decisions reflect their goals, values, and preferences. Importantly, SDM tools in multiple settings have been found to reduce utilization while remaining aligned with patient and surrogate decision- making priorities. Patient involvement in SDM can take a variety of forms, with varied degrees of “sharing” in the final decision.

It is increasingly recognized that healthcare providers underestimate the degree to which patients want and are able to be involved. Prior work in SDM for persons with dementia has typically targeted both patients and care partners. Despite concerns about decision making capacity, patients with dementia can communicate values and preferences, and thus can use SDM tools when designed appropriately. 

SDM is a relatively new tool in the ED setting and has had significant growth in the last few years. A scoping review focused on ED communication strategies among patients with dementia demonstrated that there are many scenarios where SDM is both feasible and appropriate.² Barriers to SDM included symptom severity, inadequate decisional capacity, and care partner preparedness to serve as a surrogate decision-maker.

High-quality ED dispositions for Veterans with dementia should involve shared decision making. ED providers lack best practices for making disposition decisions for persons with dementia when the need for admission is not straightforward. To support Veterans, their care partners, and ED healthcare providers to navigate this complexity, a recent career development award, funded by both VA Health Systems Research and the NIA, aims to develop a SDM tool to support disposition decisions that are aligned with patient and care partner goals if they do not have a serious illness that clearly requires admission. This study will employ a sequential design based on the widely used three-step decision aid development process created by the International Patient Decision Aid Standards (IPDAS) collaboration.³ Briefly, the three-step process involves: 1) understanding users and their decisional needs; 2) developing and refining a prototype decision aid; and 3) assessing its use in a real-world setting. To ensure that this project is relevant to Veterans and the VA healthcare system, the study team will engage an Advisory Group of operational partners, as well as Durham’s Center of Innovation ADAPT’s Veteran Research Engagement Panel (VetREP) to ensure that participant-facing materials are patient-centered, literacy-tailored, culturally appropriate, and suitable for persons with dementia.

References

1. U.S. Department of Veterans Affairs. Projections of the Prevalence and Incidence of Dementias Including Alzheimer's Disease for the Total Veteran, Enrolled and Patient Populations Age 65 and Older, September 2013. https://tinyurl.com/5c52ysmm.
2. Carpenter CR, Leggett J, Bellolio F, et al. “Emergency Department Communication in Persons Living with Dementia and Care Partners: A Scoping Review,” Journal of the American Medical Directors Association 2022;23(8):1313 e15-1313 4.
3. Witteman, HO, et al., “Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration,” Medical Decision Making 2021;41(7):736-54.