Emergency Care Should Not Be Guesswork: Preparing Patients With Dementia Before 911 Is Dialed

As the population accessing emergency departments (EDs) has continued to age, so too has the number of older adults cared for by Emergency Medical Services (EMS). In 2022, approximately 20% of all ED visits were by patients over the age of 65 and more than 33% of these patients arrived by ambulance 1. In a retrospective study evaluating EMS utilization, patients over age 65 had a diagnosis of dementia documented in 14% of the prehospital encounters 2. Our new reality is that emergency clinicians (comprising both Emergency Medicine and EMS) are encountering ever more patients with advanced comorbidities associated with age, including dementia. The care of people with dementia now represents a priority area for both research and quality initiatives in Emergency Medicine 3. Among the gaps in understanding highlighted by Geriatric Emergency Applied Research (GEAR-2.0) is “Communication and Decision-Making,” a limitation also present in the literature on the prehospital care of people with dementia 3, 4. In this issue of the Journal of the American Geriatrics Society, Pollack's qualitative research explores prehospital communication regarding care preferences for older adults with dementia 5. Through a qualitative content analysis of EMS narratives, they have revealed four important communication gaps in the prehospital care of geriatric people with dementia. These include (1) few encounters with documentation of advance care planning (ACP); (2) less than 25% of patients could communicate their needs and preferences directly; (3) professional caregivers were often unable to provide information about care preferences and priorities; and (4) only 25% of EMS reports documented information about care preferences. The authors highlight several important directions for future research and practice innovations. Among these issues are (a) the availability of accessible and unambiguous ACP documents; (b) gaps in training for prehospital providers; and (c) the role of EMS clinicians in the continuum of care. This study represents a high-risk sub-group of patients at risk for medical care discordant with their values. Discordant care both undermines patient autonomy and is an area of medicolegal risk related to wrongful prolongation of life 6. The study also reinforced that ACP documents are not available or referenced in the EMS documentation. EMS calls are inflection points when it is critically important to fully understand a patient's values and desire for treatments, including resuscitation. The authors raise the concern that many dementia patients may not have ACP documents, or that ACP documents were not accessible or interpretable. When prehospital providers are faced with eliciting care preferences without the context of ACP documentation, it often reflects a system failure prior to the EMS call. For example, prior research suggests that ACP documents are completed less frequently for patients with dementia than those with cancer, with associated higher rates of in-hospital death 7. A study of long-term care facility decedents with dementia revealed that only 38% had Physician Orders for Life-Sustaining Treatment (POLST) forms and 33% had no ACP documentation 8. Even when ACP documents are completed, they may be internally inconsistent 9, 10 and difficult to interpret. In addition, state-by-state variation in both ACP documents and mechanisms to access such forms in an emergency make it difficult for EMS to identify values and preferences 11. Finally, there is significant evidence among both hospital-based Physicians and EMS clinicians demonstrating difficultly in accurate interpretation of ACP documents, which further contributes to discordant medical care 12-14. Just as ACP documentation is not standardized nationally, EMS clinician education varies at both the state and local level (Please see Figure 1). Furthermore, most EMS clinicians lack training in palliative care principles and communication skills around treatment preferences 15. In this study, Pollack et al. shared examples of EMS clinicians contacting surrogate decision-makers who were not present to assess treatment preferences. While it is important for EMS clinicians to solicit information about goals of care when it is unclear, ideally this information should be both well documented and accessible before the 911 caLL is made. Understanding care priorities is not simply a process of making a phone call to elicit information but is a complex integration of prognostic information and patient values. Additional training for EMS clinicians and increased collaboration with physicians will help these conversations. As we look to improve the care of people with dementia there is always a role for education and EMS personnel would benefit from an understanding of illness trajectories, prognostication in serious illness, and the potential risks and benefits of interventions, including transportation to the hospital 16 and care at the end of life 17. Just as there is a role for education, there is also a role for research-based ACP processes and equipping both hospital-based and EMS clinicians with the tools necessary to safely care for a person with dementia. One area of innovation is POLST registries which can allow for rapid access of POLST forms in the field 11. Registries could potentially increase the accessibility of POLST forms but would not alleviate the concern regarding interpretation of POLST orders 12, 14. Registries are also complex to implement, with funding, data management, and adoption hurdles. Another area of innovation is Patient-to-Clinician Video (PCV). PCV enables the EMS clinician to rapidly access a video recording in which the patient and/or their healthcare agent describes the patient's treatment preferences in the case of critical illness or cardiac arrest. In the TRIAD VIII, multi-center, multi-state study, comparing paper-based documents to paper-based documents combined with PCV, adding PCV resulted in a statistically significant reduction in confusion about treatment preferences and decreased initial discordant care 18. PCV has challenges to scale nationally as it would require time for adoption in addition to state legislation, rule making, or regulation authorizing its use. However, as prehospital clinicians increasingly encounter patients with progressive and serious illness, it is essential that they are equipped with the tools and confidence to navigate discussions of care preferences. PCV can be a safety tool to clarify patient wishes and provider actions to ensure concordant care. Lastly, this study by Pollack et al. reaffirms the critical role that prehospital providers have in the continuum of care for older adults, particularly with dementia. The role of prehospital medicine has shifted in recent years beyond stabilization and transport. Approximately half of all EMS activations in the United States are non-transports, with the patient cared for in place 19. During the Emergency Triage, Treat, Transport (ET3) federal pilot, EMS systems were reimbursed for treatment in the home and transport to alternative destination in older adults who had Medicaid 20. During this pilot, older patients were successfully treated in the home and transported to alternative destinations without increased morbidity or mortality 21. While this pilot has ended, some insurance companies continue to reimburse EMS for treatment in place and alternative destinations. In addition, in recent years, there has been expansion of community paramedicine, including for the care of people with dementia 21. Community paramedicine programs utilize paramedics to care for patients and address a spectrum of population health and social needs. This allows for increased home and facility-based care, avoiding transfers to the ED and improving coordination of care in ambulatory settings. While these programs are becoming more common and exist in every state, wide-spread growth is limited secondary to lack of reimbursement models and funding. It is becoming increasingly clear that older adults face significant risks after transfer to EDs, including increased rates of delirium 22 and mortality associated with boarding 23. As such, maximizing opportunities to treat older patients in the community is crucial for both patients and health systems. In conclusion, it is critically important that people with dementia and their surrogates have access to high-quality serious illness conversations and that these discussions are documented in ways that are easily accessible and safely interpretable by frontline personnel during times of crisis. Advancing goal-concordant care for older adults with dementia and those with serious illness will require collaboration between hospital and clinic-based personnel and our prehospital colleagues. Of paramount importance is to have ACP tools for patients that are easily accessible for EMS clinicians to ensure that patients receive goal-concordant rather than discordant medical care. Melissa Kroll: conceptualization, writing – original draft, writing – review and editing. Alexander D. Ginsburg: conceptualization, writing – original draft, writing – review and editing. Ferdinando L. Mirarchi: conceptualization, writing – original draft, writing – review and editing. The authors have nothing to report. Ferdinando Mirarchi is the Founder of an advance care planning platform called MIDEO which is not mentioned in the editorial. The majority shareholder is US Acute Care Solutions and Dr. Ferdinando Mirarchi is a minority shareholder.