Advance Care Planning and End-of-Life Education in Heart Failure: Insights From the NCDR PINNACLE Registry

Advance care planning (ACP) and prognosis/end-of-life (EOL) education are recommended by several professional organizations and consensus guidelines in heart failure (HF) care.¹ Yet, these occur infrequently in HF care.^2,3

A primary goal of the PINNACLE (Practice Innovation and Clinical Excellence) Registry was to track critical measures of quality improvement and outcomes. For HF, ACP and EOL education were identified as critical measures with education provided to clinicians. Given guidelines suggesting the importance of these metrics in HF care, data on ACP and EOL education were collected. Therefore, we examined (1) prevalence of ACP and EOL education in patients with HF and (2) variation in these metrics by patient, clinic, and provider characteristics.

The data utilized in this research were obtained from the American College of Cardiology Foundation’s (ACCF) National Cardiovascular Data Registry (NCDR). Data are not publicly available, but requests for analyses can be submitted to the PINNACLE R&P Committee. Analyses are conducted by contracted Data Analytic Centers, which then provide aggregated and de-identified results to the stakeholder who submitted the research proposal.

Patients with HF (n=1 684 284) enrolled in the PINNACLE Registry, a prospective cohort for a range of cardiovascular conditions that are collected from 348 US outpatient academic and nonacademic cardiology practices from January 1, 2013 through June 30, 2018, were identified. Advarra approved this study and granted a waiver of written informed consent. An electronic medical record mapping algorithm is used to capture variables of interest and relevant data, although paper-based reporting forms may also be used. Data were limited to those documented and inputed into the registry by each participating practice. χ² for categorical variables and t tests for continuous variables were used. All analyses were performed using SAS Version 9.4 (SAS Institute, Cary, NC) by the Baim Institute for Clinical Research.

Rates of and variation in ACP and EOL education were calculated for 1 675 458 HF outpatients (see Table 1).

Table 1.

Rates of ACP and EOL within Patient, Provider, and Practice Characteristics

Documentation of ACP was found for 34.1% of patients (Mean_age=68.9±14.1). Documentation of ACP was low among patients with left ventricular assist device (34.1%) or other cardiovascular implantable electronic devices (pacemaker, 35.2%; ICD, 30.6%; CRT, 35.2%; CRT-D, 35.9%). Although a high rate of missingness, less than half of patients with New York Heart Association (NYHA) I–III HF (42–47%) had ACP documented compared with a higher rate among NYHA class IV (60.0%).

Documentation of EOL education was exceedingly rate, occurring in only 1.9% of patients, with similar rates for men and women (1.9%), but lower among Hispanic/Latinos patients (0.3%), and Black patients (1.6%) compared with non-Hispanic/Latino patients (2.0%), and White patients (2.5%). Documented EOL education was low among patients with NYHA class III (2.5%) or IV (1.4%) HF, although there was a high rate of missingness. Similarly, documentation was low among patients with cardiovascular implantable electronic devices (pacemaker, 1.4%; ICD, 1.7%; CRT, 1.3%; CRT-D, 1.3%).

Despite the importance of ACP and EOL discussions in patients with HF, this large contemporary outpatient evaluation reveals modest rates of ACP (<50%) and very low rates of EOL education (<2%), with substantial variation by patient and practice characteristics. Of note, there was little evidence of appreciably greater discussion in those with a poor prognosis, including those who were NYHA class III/IV, although the association is unclear given the high rates of missingness. These findings suggest that despite guideline recommendations, patients with HF have infrequently documented (and potentially infrequently received) ACP or EOL education, which may adversely affect a patient’s ability to engage in informed decision making. This is particularly important given the unpredictable disease trajectory of HF and the need for multiple treatment decisions by patients with advanced HF, increasing the likelihood that they may lack the knowledge and understanding to make these decisions.

Additionally, results from this study suggest a disconnect between consensus guidelines and routine clinical care, despite potential benefits by various stakeholders. Several factors may contribute to variation in ACP and EOL education, including access to care, provider time and resources, as well as provider confidence in these discussions. Future work is needed to understand these factors and improved ways by which to implement guideline-directed HF care. A multidisciplinary model which addresses barriers to care, such as limited care communication among team members, may help with ACP and EOL education. In addition, training in discussing ACP and EOL education be of great help to clinicians.⁴ Increasing the amount of time and resources available to facilitate these discussions may also assist with improved reimbursement for care coordination and related interventions. Future research should test implementation efforts to increase engagement in these care aspects.

Article Information

Sources of Funding

This research was supported by the American College of Cardiology Foundation’s National Cardiovascular Data Registry (NCDR). The views expressed in this article represent those of the author(s), and do not necessarily represent the official views of the NCDR or its associated professional societies identified at CVQuality.ACC.org/NCDR. For more information go to CVQuality.ACC.org/NCDR or email ncdrresearch@acc.org.

Disclosures

Dr. Cavanagh’s effort was partially sponsored by HSR&D post-doctoral fellowship VA Office of Academic Affairs. One of the authors, Dr. Alexander Turchin, reports no disclosures related to this study, but reports the following relationships with industry: Dr. Turchin reports equity in Brio Systems. Dr. Turchin also reports receiving research support from Patient Centered Outcomes Research Institute, Astra Zeneca, Eli Lilly, Novo Nordisk and Sanofi. In addition, Dr. Rosman’s effort was sponsored by a grant from the National Heart, Lung, and Blood Institute (K23HL141644). Dr. Rosman reports consultancy fees from Pfizer and Biotronik. No other authors report financial relationships with industry.