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

Abstract

HomeCirculation: Cardiovascular Quality and OutcomesVol. 16, No. 1Advance Care Planning and End-of-Life Education in Heart Failure: Insights From the NCDR PINNACLE Registry Open AccessLetterPDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toOpen AccessLetterPDF/EPUBAdvance Care Planning and End-of-Life Education in Heart Failure: Insights From the NCDR PINNACLE Registry Casey E. Cavanagh, PhD, Lindsey Rosman, PhD, Philip Chui, MD, Karl Minges, PhD, MPH, Nihar R. Desai, MD, MPH, Sarah Goodlin, MD, Savitri Fedson, MD, John A. Spertus, MD, MPH, Ty J. Gluckman, MD, Yang Song, MS, Luke Zheng, BS, Alexander Turchin, MD, MS, Gheorghe Doros, PhD, Jane J. Lee, PhD and Matthew M. Burg, PhD Casey E. CavanaghCasey E. Cavanagh Correspondence to: Casey E. Cavanagh, PhD, Department of Psychiatry and Neurobehavioral Sciences, University of Virginia School of Medicine, Behavioral Medicine Clinic, PO Box 800223, Charlottesville, VA 22908. Email E-mail Address: [email protected] https://orcid.org/0000-0003-2464-5041 Department of Psychiatry and Neurobehavioral Sciences, University of Virginia School of Medicine, Charlottesville, VA (C.E.C.). Search for more papers by this author , Lindsey RosmanLindsey Rosman https://orcid.org/0000-0002-0944-6864 Department of Medicine, Division of Cardiology, University of North Carolina at Chapel Hill, Chapel Hill, NC (L.R.). Search for more papers by this author , Philip ChuiPhilip Chui Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, CT (P.C., K.M., N.R.D., M.M.B.). Search for more papers by this author , Karl MingesKarl Minges Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, CT (P.C., K.M., N.R.D., M.M.B.). Center for Outcomes Research and Evaluation, Yale School of Medicine, New Haven, CT (K.M., N.R.D.). Department of Health Administration & Policy, University of New Haven, West Haven, CT (K.M.). Search for more papers by this author , Nihar R. DesaiNihar R. Desai https://orcid.org/0000-0003-2384-2545 Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, CT (P.C., K.M., N.R.D., M.M.B.). Center for Outcomes Research and Evaluation, Yale School of Medicine, New Haven, CT (K.M., N.R.D.). Search for more papers by this author , Sarah GoodlinSarah Goodlin VA Portland Healthcare System and Department of Medicine, Oregon Health & Science University, Portland, OR (S.G.). Search for more papers by this author , Savitri FedsonSavitri Fedson https://orcid.org/0000-0003-1838-8640 Micheal E DeBakey VA Medical Center, Department of Medicine, Baylor College of Medicine, Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX (S.F.). Search for more papers by this author , John A. SpertusJohn A. Spertus https://orcid.org/0000-0002-2839-2611 Department(s) of Biomedical and Health Informatics and Internal Medicine, Section of Cardiovascular Disease, University of Missouri- Kansas City and Saint Luke’s Mid America Heart Institute, Kansas City, MO (J.A.S.). Search for more papers by this author , Ty J. GluckmanTy J. Gluckman https://orcid.org/0000-0002-7187-6822 Center for Cardiovascular Analytics, Research and Data Science (CARDS), Providence Heart Institute, Providence St. Joseph Health, Portland, OR (T.J.G.). Search for more papers by this author , Yang SongYang Song Baim Institute for Clinical Research, Boston, MA (Y.S., L.Z., A.T., G.D., J.J.L.). Search for more papers by this author , Luke ZhengLuke Zheng https://orcid.org/0000-0001-8468-4590 Baim Institute for Clinical Research, Boston, MA (Y.S., L.Z., A.T., G.D., J.J.L.). Search for more papers by this author , Alexander TurchinAlexander Turchin https://orcid.org/0000-0002-8609-564X Baim Institute for Clinical Research, Boston, MA (Y.S., L.Z., A.T., G.D., J.J.L.). Harvard Medical School, Boston, MA (A.T.). Division of Endocrinology, Department of Medicine, Brigham and Women’s Hospital, Boston, MA (A.T.). Search for more papers by this author , Gheorghe DorosGheorghe Doros Baim Institute for Clinical Research, Boston, MA (Y.S., L.Z., A.T., G.D., J.J.L.). Department of Biostatistics, Boston University, MA (G.D.). Search for more papers by this author , Jane J. LeeJane J. Lee Baim Institute for Clinical Research, Boston, MA (Y.S., L.Z., A.T., G.D., J.J.L.). Search for more papers by this author and Matthew M. BurgMatthew M. Burg https://orcid.org/0000-0002-1263-2385 Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, CT (P.C., K.M., N.R.D., M.M.B.). Department of Anesthesiology, Yale School of Medicine, New Haven, CT (M.M.B.). Search for more papers by this author Originally published17 Jan 2023https://doi.org/10.1161/CIRCOUTCOMES.122.008989Circulation: Cardiovascular Quality and Outcomes. 2023;16Advance 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.2,3A 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 CharacteristicsPatient characteristicsACPEOLMissingSex0.0 Men33.61.9 Women34.31.9Race28.1 White34.02.5 Black33.71.6 Other22.80.6Ethnicity0.0 Not Hispanic/Latino33.72.0 Hispanic/Latino38.40.3Current smoker36.01.57.2Insurance26.1 Private35.41.7 Medicare35.31.0 Medicaid37.80.4 Other31.80.2 None59.248.0Comorbidities0.0 Dyslipidemia34.32.2 Diabetes32.90.2 Hypertension34.22.1 Myocardial infarction35.42.2 PCI/PTCA39.12.1 CABG38.82.7 Stroke/TIA38.20.8Cardiac events0.0 LVAD34.10.0 CRT35.21.3 CRT-D35.91.3 ICD30.61.7 Permanent pacemaker35.21.4MAGGIC risk score quartiles95.2 0–1149.23.8 12–1653.43.8 17–2153.23.4 22–4551.62.4MAGGIC risk score quartiles without NYHA88.9 0–1241.12.7 13–1742.92.0 18–2143.71.6 22–4242.01.1NYHA class58.7 Class I42.13.5 Class II46.54.3 Class III43.82.5 Class IV60.01.4Heart failure first diagnosed ≥18 months ago29.91.30.0Beta blocker33.51.70.0ACEi/ARB33.51.50.0Provider/Practice characteristicsProvider type0.0 Physician33.82.0 Nurse practitioner37.21.7 Other31.81.1Geographic region0.0 Northeast35.30.1 South region32.21.5 Midwest42.86.0 West region29.00.3Location0.1 Urban37.53.7 Suburban31.80.4 Rural29.31.1Data presented are in percentages unless otherwise indicated. ACEi/ARB indicates angiotensin converting enzyme inhibitors/angiotensin receptor blocker; ACP, advanced care planning; CABG, coronary artery bypass graft; CRT, cardiac resynchronization therapy; CRT-D, cardiac resynchronization therapy defibrillator; EOL, end-of-life education; ICD, implantable cardioverter defibrillator; LVAD, left ventricular assist device; MAGGIC, meta-analysis global group in chronic heart failure; NYHA, New York Heart Association; PCI/PCTA, percutaneous coronary intervention/percutaneous transluminal coronary angioplasty; TIA, transient ischemic attack.Documentation of ACP was found for 34.1% of patients (Meanage=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 InformationSources of FundingThis 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 [email protected]org.Nonstandard Abbreviations and AcronymsACCFAmerican College of Cardiology FoundationACPadvance care planningEOLend of lifeHFheart failureNCDRNational Cardiovascular Data RegistryNYHANew York Heart AssociationDisclosures 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.FootnotesFor Sources of Funding and Disclosures, see page 76.Correspondence to: Casey E. Cavanagh, PhD, Department of Psychiatry and Neurobehavioral Sciences, University of Virginia School of Medicine, Behavioral Medicine Clinic, PO Box 800223, Charlottesville, VA 22908. Email casey.[email protected]edu