Towards Improved Patient-Centered Communication in High-Stakes Heart Failure Decisions: the "Best Case/Worst Case" Framework

Heart failure (HF) is a prevalent condition characterized by unacceptable symptom burdens, comorbid conditions, multiple readmissions, and high mortality rates.1Khan RF Feder S Goldstein NE Chaudhry SI Symptom burden among patients who were hospitalized for heart failure.JAMA Int Med. 2015; 175: 1713-1715Crossref PubMed Scopus (21) Google Scholar,2Edmonston DL Wu J Matsouaka RA et al.Association of post-discharge specialty outpatient visits with readmissions and mortality in high-risk heart failure patients.Am Heart J. 2019; 212: 101-112Crossref PubMed Scopus (16) Google Scholar With the expansion of surgical and interventional therapies for patients with advanced disease, patients with HF are increasingly asked to make difficult, high-stakes decisions regarding complex treatment options, sometimes in a very short period of time.3Matlock DD McGuire WC Magid M Allen L Decision making in advanced heart failure: bench, bedside, practice, and policy.Heart Fail Rev. 2017; 22: 559-564Crossref PubMed Scopus (10) Google Scholar Prognostic uncertainty, inherent in HF care, makes shared decision making among patients, clinicians and family members even more necessary.4Rachel S Helen C Helen H Hungin APS Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management.BMJ Support Pall Care. 2017; 7: 464Crossref PubMed Scopus (15) Google Scholar However, we know, from both the literature and our personal experiences, that patients and HF clinicians struggle to navigate discussions that involve a decision. Further, the way that we, as clinicians, present decisions and options to patients varies widely and is likely to be dependent on a number of factors, including observed practices (how we were trained), institutional culture (thresholds for offering therapies), and our own biases (what would we choose, given our own personal goals and values). As a result, despite our best intentions, patients often come away from decisional discussions with the impression of a false dichotomy—eg, pursue the therapy and live, or decline the therapy and die.5Ottenberg AL Cook KE Topazian RJ Mueller LA Mueller PS Swetz KM Choices for patients “without a choice.”.Circulation: Cardiovasc Qual Outcomes. 2014; 7: 368-373Crossref PubMed Scopus (29) Google Scholar Such a binary framework, whether the result of the way we present options to patients or how they hear us, or both, may lead to the pursuit of high-risk therapies, even in the setting of poor prognosis or low values/choice concordance. In an attempt to mitigate some of these shortcomings, decision aids have been developed to try to standardize the information presented during these deliberations.6Allen LA McIlvennan CK Thompson JS et al.Effectiveness of an intervention supporting shared Decision Making for Destination Therapy Left Ventricular Assist Device: the DECIDE-LVAD randomized clinical trial.JAMA Intern Med. 2018; 178: 520-529Crossref PubMed Scopus (113) Google Scholar For example, the DECIDE LVAD (Decision Making for Destination Therapy Left Ventricular Assist Device) decision aid includes patient- and clinician-facing brochures and videos that provide comprehensive information about left ventricular assist devices (LVADs) and the alternatives.7I DECIDE LVAD. Colorado Program for Patient Centered Decisions. https://patientdecisionaid.org/lvad/. Accessed July 4, 2023.Google Scholar Although they are of value, these materials are not sufficient in isolation because they fail to individualize the discussion; all patients, whether they are 25 or 75 years old, receive the same information, irrespective of patient-specific factors, such as comorbidities and risk factors, health literacy, or background and culture. More personalized communication that promotes prognostic understanding and informs patients of the scope of available options and potential outcomes is needed. The Best Case/Worst Case (BC/WC) framework is a communication strategy that provides a structured framework to enhance prognostic understanding and clarify the presentation of choices when faced with high-stakes decisions. Initially developed to facilitate decision making in the context of high-risk surgical procedures, BC/WC uses narrative and handwritten visual aids to explain various treatment courses, to describe and help patients visualize a range of possible outcomes (thus deviating from the binary framework described previously), and to illustrate which options are more likely, based on the patients’ risk profiles. In short, the tool helps to contextualize the medical decision into a larger personal framework. Implementation of the BC/WC framework has been shown to improve shared decision making in life-limiting surgical diseases8Taylor LJ Nabozny MJ Steffens NM et al.A framework to improve surgeon communication in high-stakes surgical decisions: best case/worst case.JAMA Surg. 2017; 152: 531-538Crossref PubMed Scopus (155) Google Scholar and has been adapted to support decision making in other populations, including patients with renal disease who are considering hemodialysis.9Karlie H Anne B Amy Z et al.Best case/worst case: protocol for a multisite randomised clinical trial of a scenario planning intervention for patients with kidney failure.BMJ Open. 2022; 12e067258Google Scholar The BC/WC framework lends itself particularly well to high-stakes decisions in HF for a number of reasons. First, it establishes a choice. It pushes clinicians to describe, in detail, not only the best, worst and most likely possible outcomes for the high-risk (eg, surgical) option but also for the alternatives (eg, best supportive cardiology care), minimizing the likelihood that patients will interpret their options as “live or die.” Second, by portraying a range of possible outcomes with narrative examples, clinicians can provide patients with a more realistic understanding of their situations and help to manage expectations about the likely clinical course following each option, empowering patients and caregivers to make more accurately informed decisions. In particular, the narrative examples may help patients to visualize each option more concretely in their minds and to reduce anxiety about the uncertainties of their illness, yielding a greater sense of control. Third, the BC/WC framework allows clinicians to tailor their communication to meet the unique needs of each patient and family. Patients with advanced HF may have varying levels of medical literacy, emotional readiness to receive information and communication preferences. Some patients may prefer a more detailed explanation of the procedures and risks involved, whereas others may wish to focus on the larger picture. Clinicians can tailor their BC/WC presentations to meet individual needs. Further, this type of communication may also improve prognostic awareness and understanding of complex medical information in socially vulnerable groups. Finally, the tool provides a durable reference that patients and caregivers can consult throughout the decision-making process. We advocate for the routine use of the BC/WC framework for patients with advanced HF who are faced with high-stakes decisions. An example of how this framework might be used for a high-risk patient deciding whether to pursue an LVAD or the best supportive cardiology care is depicted in Fig. 1. After setting the stage and establishing communication preferences, the clinician can begin to create the BC/WC graphic aid, spending a similar amount of time describing the 2 different treatment pathways. A vertical line depicts each treatment option, and the length of the line represents the range of possible outcomes. The Best Case and Worst Case scenarios are depicted by the star and square icons, respectively, and they represent realistic but ideal vs unfavorable outcomes with each therapy. The Most Likely scenarios are identified by the oval icons, and they represent the expected outcomes, given the patient's comorbidities and risk factors. In particular, the position of the Most Likely scenarios, which are of varying distances from the Best and Worst Cases, based on clinician prognostication/instinct, is extremely important, because the position can clearly and realistically convey the gravity of the situation. In this case example, the patient's kidney disease, advanced age and elevated body mass index must be considered as risk factors when discussing an LVAD and the likelihood of various outcomes. Similarly, the best supportive cardiology care in this case should reflect the clinician's perceptions of outcome possibilities based on the patient's recent hospitalizations, blood pressure and kidney disease. Using BC/WC takes practice, especially if it is far removed from the way in which clinicians generally discuss decisions. Clinicians may find that the tool presents too much information. Studies have shown that patients felt the comprehensiveness yielded more clarity about the decision,10Kruser JM Nabozny MJ Steffens NM et al."Best case/worst case": qualitative evaluation of a novel communication tool for difficult in-the-moment surgical decisions.J Am Geriatr Soc. 2015; 63: 1805-1811Crossref PubMed Scopus (103) Google Scholar but a visual aid that relies on written words may not be accessible to patients with low literacy, and the tool should be adapted to patients’ needs. Clinicians may also struggle with how to position accurately the Most Likely outcome on the graphic aid, so it is useful and necessary to inform patients that there is some degree of prognostic uncertainty. Some may find it too blunt, especially if they are not accustomed to sharing details about poor prognoses or potential adverse events. Similarly, patients have differing information preferences, and some may not want to hear about prognoses. We would encourage clinicians to continue to tailor the framework to what works best for them and for each individual patient, noting that similar to any skill or surgery, communication mastery takes practice. For additional assistance, there are a number of free toolkits (https://www.hipxchange.org/BCWC) and representative videos online (https://www.youtube.com/watch?v=3Kz59dW0cak) that clinicians may find helpful to watch prior to implementing this framework. In conclusion, we believe the BC/WC framework is a valuable communication strategy that can improve communication concerning serious illness and high-stakes, shared decision making with patients with advanced HF. We advocate the framework both for its uptake among HF clinicians as well as for studies that seek to adapt the tool for use in our population and to understand subsequent perspectives on decisional quality. Through promoting prognostic understanding and an awareness of available treatment options, we believe the BC/WC tool can help patients with advanced HF receive care that is better aligned with their goals and values. Sarah Chuzi None.