“What if I want to turn it off?” she asked. Jen (name changed) has had her left-ventricular assist device (LVAD) for many years. This admission was similar to the other handful this year which were also for gastrointestinal bleeding. She is no stranger to hospitalization. She has, however, become a stranger to the quality of life (QOL) she once enjoyed. As the palliative medicine team, we were consulted to help facilitate discussions about Jen’s desire to deactivate her LVAD. In other words, we needed to figure out what matters most to Jen.
What “Matters Most” is one of the Geriatric 5Ms and involves determining individualized meaningful healthcare outcomes, goals, and care preferences for older adults based on their stated values.1 Connecting a patient’s values with their care preferences, especially when there is discordance between the two, can be challenging. Multiple strategies from serious illness communication science provide tools in this realm. This article highlights communication techniques, including Vitaltalk’s REMAP (reframe, expect emotion, map, align, plan),2 a framework to transition with a patient from a shared understanding of difficult news to identify and translate their values into treatment recommendations.
Establishing a Frame of Reference (Reframe, Expect Emotion)
Often when a conversation is needed to clarify next steps, it is because what we have been doing is not working as we hoped, or something has changed in a significant way. With Jen, we were drawn to reframe around the possibility that what we were doing was not aligning with her goals. We need to remember that emotion is likely to surface in some form (sadness, anger, fear) and be ready to identify and support it.
Connecting Values with Care Preferences (Map, Align, and Plan)
Once Jen’s understanding of the medical facts and her prognosis is clarified, we map her values. Within the 5M framework, this is determining what matters most and it is mapping within REMAP. We ask multiple questions like what activities bring joy or what would make life not worth living? We then align expressed values into care preferences. Values and preferences are not the same, so values must be prioritized and not overlooked.1 We aim to make a recommendation and see if this resonates with Jen. During this process we cannot forget other important considerations.
We cannot elicit what matters most to our patients without acknowledging and exploring all of their facets (with permission). Intersectionality is defined as “the interconnected nature of social categorizations, such as race, class, and gender, as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.”3 Jen is a 65-year-old, English-speaking, African-American, cis-gendered, heterosexual woman with multiple comorbidities limiting her daily functioning. She is a great-grandmother and a devout Christian. Each of these identities and characteristics plays a role in her decision making and influences her ultimate response to what matters most to her in her care planning.
Our identities are not the same as our patients’, which can create discomfort while exploring their impact on patient decision making. To help mitigate this discomfort, separate your beliefs and experiences from your patients’ and transform that feeling into curiosity through your questions. Jen found support through her faith. Ultimately, God told her not to discontinue her LVAD.
When caring for people from marginalized populations, it is critical to be mindful of possible distrust of the medical system as a result of our patients’ lived experiences with systemic racism, discrimination, and other biases. That distrust may extend to us. It is our responsibility as clinicians to identify it and respond with trauma-informed care. For example, ask your patient if their care plan respects them and what they want to happen moving forward.
While the topic of providing trauma-informed care is outside of the scope of this article, we must acknowledge its necessity in establishing what matters most to our patients. If our patients do not trust us, we are less likely to comprehensively identify what matters most to them. The goal is to avoid retraumatizing interactions and reinforce that they are in control of their care planning.
Sometimes patients identify healthcare preferences that do not seem to align with what matters most to them. In these cases, it is helpful to point out the potential discordance by expressing your concern about how the preference can lead to outcomes that contradict their values. (“Jen, I’m concerned (or I’m worried) that continuing warfarin will cause more hospitalizations for bleeding which may cause you to miss those important family functions.”)
Identifying Trade Offs
There are multiple routes to achieving a medical plan that respects Jen’s values. In her prioritizing preventing a stroke, Jen decided to continue warfarin which may result in a tradeoff between time at home versus another hospitalization. Pointing out these trade-offs helps patients link their values with their preferences, two things patients may not inherently differentiate. Thus, it is our job as physicians to think critically about the various medical plans that both uphold our patients’ values and optimize their QOL.
Patients’ preferences, unlike values, may not be static1 which means treatment plans should frequently be revisited and can be done so across multiple settings. By mapping our patients’ values through lenses of intersectionality and potential trauma, SGIM members can reevaluate values and ensure they continue to align with their patients’ preferences and care plans.