Shared Decision Making for Persons Living with Dementia and Care Partners: A Complex Conversation

By Justine Seidenfeld, MD and Fernanda Bellolio, MD, MS

When caring for persons living with dementia (PLWDs) in the emergency department (ED), there are many situations in which there is more than one reasonable option, and a decision needs to be made. This can pertain to different types of decisions, such as whether to obtain a certain lab or imaging test, what type of medication to try, and whether to admit or discharge a patient home, among others. In these situations, shared decision making (SDM) can facilitate conversations between patients, care partners, and health care providers, and increase patient and care partner understanding of their options. Despite concerns about decision making on behalf of the SAEM Academy of capacity in PLWDs, they are able to communicate values and preferences, and thus can participate in SDM when done appropriately. Below, we outline steps involved in SDM and important considerations when discussing ED decisions with patients and care partners.

Decisional Roles

One of the first steps is determining who will be involved in making the disposition decision.

• PLWDs can reliably communicate their values and choices, but their decision making capacity is often overlooked by both health care and family members

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• Additionally, the care partner present at the ED visit with them may not be the documented legally authorized representative. In these cases, ideally both the bedside care partner and the legally authorized representative would be involved along with the patient. If there is no care partner at the bedside, do your best to reach out to the most appropriate party.

• PLWDs will experience a range of “good days and bad days.” Patients with low dementia severity and high decisional capacity when at their baseline may be having more severe symptoms at the time of the ED visit. Likewise, a patient with high severity dementia may be having a “good day” during the ED visit and should not be excluded from the decision-making conversation.

Establish Rapport

The ED encounter represents a very stressful situation, as it is an unfamiliar environment requiring interactions with many different staff members. Trust is needed so that PLWDs and care partners feel comfortable expressing their own values and preferences.

• Health literacy is an important communication barrier when having a complex conversation around medical decisions. This is especially true for PLWDs as health literacy can change as dementia progresses.

• Nonverbal communication is also important to establish rapport. This can include taking the time to sit or otherwise position yourself at eye-level and avoid multi-tasking (including use of screens) during the discussion.

Provide Information and Assess Decisional Needs

One of the health care provider’s roles is to give information about the options available to the patient in a neutral and balanced manner.

• Discussing the possible risks and benefits of any decision must be tailored to the PLWD and care partner’s particular situation and the reason for their ED visit. While it may not be possible, or even recommended, to convey risks with statistics, the patient and care partner need the relevant facts to participate in decision making.

• Give the patient and care partner sufficient time to process new information. This may require breaking up the discussion into two or more sessions.

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Clarify Personal Values and Preferences

Give the PLWD and care partner time to share any relevant information with you.

• The patient and the care partner may have different goals or levels of risk tolerance or aversion that need to be balanced.

• Clarify any goals that might have prompted the ED visit and get a sense of “what matters most” to them.

• Personal or situational circumstances for the patient and care partner might impact the decision (for example, if they are deciding whether to be admitted or not, and the care partner lives 45 minutes away and cannot help every day with activities like dressing or bathing at home.)

Support Deliberations

This final step combines knowledge about the risks and benefits of the options along with the goals of the patient and care partner, to work together to reach agreement about the preferred option.

• Decision making can happen in stages, and the health care provider’s role is to facilitate progress throughout the discussion.

• This may reveal additional psychosocial or resource related issues that influence the decision. For example, if they are deciding about admission versus discharge, if there are home help options that would support a safe discharge home, be sure to communicate that to the patient and care partner.

PLWDs are a varied and medically complex population. Many ED decisions require us to weigh downstream possibilities that are often difficult to quantify. It is important to recognize when SDM can be used to support ED care that is consistent with what matters most to these patients and care partners. Involving patients in their health care decisions both empowers and respects them; however, even compared to older adults without dementia, guidelines for ED communication and SDM for PLWDs and their care partners are very limited. Future work in this area is needed to support ED health care providers, patients, and their care partners to navigate this complexity.

About The Authors

Dr. Bellolio is a professor of emergency medicine in the Department of Emergency Medicine, Department of Health Sciences Research, and Department of Medicine, Section of Geriatric Medicine at Mayo Clinic. She is a member-at-large of SAEM’s Academy of Geriatric Emergency Medicine (AGEM) and a methodologist for SAEM’s Guidelines for Reasonable and Appropriate Care in the Emergency Department (GRACE).

Dr. Seidenfeld is a core investigator with the Durham VA Center of Innovation to Accelerate Discovery and Practice Transformation and a practicing emergency physician at the Durham VA Medical Center. She recently completed a health service research fellowship with National Clinician Scholar Program at the Durham VA and Duke University.

The Academy of Geriatric Emergency Medicine (AGEM) works to improve the clinical care of older patients, prepare trainees to care for older patients, and advance the geriatric EM research agenda. Joining AGEM is free! Just log into your member profile. Click “My Account” in the upper right navigation bar. Click the “Update (+/-) Academies and Interest Groups” button on the left side. Select the box next to the academy you wish to join. Click “save.”