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Protocol driven palliative care consultation: Outcomes of the ENABLE CHF-PC pilot study Rachel Wells, MSN, RN a*, Deborah Ejem, Ph.D. a, J. Nicholas Dionne-Odom, Ph.D., RN a, Gulcan Bagcivan, Ph.D., RN a, Konda Keebler, MS, RN a, Jennifer Frost, MSN, RN a, Andres Azuero, Ph.D. a, Alan Kono, MD b, Keith M. Swetz, MD, MA c,d , Marie Bakitas, DNSc a,c aSchool of Nursing, University of Alabama at Birmingham, MT412B, 1720 2nd Avenue South, Birmingham, AL 35294-1210, USAbCardiology, Dartmouth-Hitchcock Medical Center/Geisel School of Medicine at Dartmouth, Heart and Vascular Center DHMC, 1 Medical Center Drive, Lebanon, NH 03756, USAcDepartment of Medicine, Division of Gerontology, Geriatrics, and Palliative Care, UAB Center for Palliative & Supportive Care, University of Alabama at Birmingham, 1720 2nd Avenue South, Birmingham, AL 35294-0012, USA dBirmingham Veterans Affairs Medical Center, Birmingham, AL, USA ARTICLE INFO Article history: Received 19 January 2018 Received in revised form 12 June 2018 Accepted 14 June 2018 Available online 22 August 2018 ABSTRACT Background:Little has been reported about protocol-driven outpatient palliative care consultation (OPCC) for advanced heart failure (HF). Objectives:To describe evaluation practices and treatment recommendations made during protocol-driven OPCCs for advanced HF. Methods:We performed content analysis of OPCCs completed as part of ENABLE CHF-PC, an early palliative care HF intervention, conducted at sites in the Northeast and Southeast. T-tests, Fisher’s exact, and Chi- square tests were used to evaluate sociodemographic, outcome measures, and site content differences. Results:Of 61 ENABLE CHF-PC participants, 39 (64%) had an OPCC (Northeast,n= 27; Southeast,n= 12). Social and medical history assessed most were close relationships (n= 35, 90%), family support (n= 33, 85%), advance directive status (n= 33, 85%), functional status (n= 30, 77%); and symptoms were mood (n= 35, 90%), breathlessness (n= 28, 72%), and chest pain (n= 24, 62%). Treatment recommendations focused on care coordination (n= 13, 33%) and specialty referrals (n= 12, 31%). Between-site OPCC differences included assessment of family support (Northeast vs. Southeast: 100% vs. 50%), code status (96% vs. 58%), goals of care discussions (89% vs. 41.7%), and prognosis understanding (85% vs. 33%). Conclusion:OPCCs for HF focused on evaluating medical and social history, along with goals of care and code status discussions. Symptom evaluation commonly included mood disorders, pain, dyspnea, and fatigue. Notable regional differences were found in topics evaluated and OPCC completion rates. © 2018 Elsevier Inc. All rights reserved. Keywords: Outpatient supportive care Heart failure Content analysis Introduction Advanced heart failure (HF) as defined by New York Heart Associ- ation (NYHA) Stage III-IV 1or American College of Cardiology/Ameri- can Heart Association (ACC/AHA) Class C-D 2is characterized by high symptom burden, complex treatments, poor quality of life, and unpredictable trajectory. 3HF affects 6.5 million American adults, with a 46% increase anticipated over the next 15 years. 4Whilefive- year survival after HF diagnosis has improved from 54% to 61%, HF remains a top cause of hospitalization and mortality. 5 Given this burden, there has been a call for collaboration between palliative care and cardiology in HF management. 6,7 Recent guidelines by cardiovascular professional organizations have called for palliative care integration into longitudinal HF care including access to pallia- tive care in the ambulatory setting. 8Palliative care (PC) focuses on relief of suffering through symptom and pain management, establish- ing goals of care, and holistic care coordination. 9Despite evidence supporting its benefits 10,11 PC initiation often occurs late, 12if at all, 13 with consultations occurring primarily during hospitalizations. While rates of inpatient palliative care use for HF vary from 2% to 33%, 14 16 there is limited evidence describing the frequency of outpatient PC for HF. Additionally, literature describing the features of these outpa- tient palliative care visits is sparse, especially when symptoms are not the primary motivation for consultation. Prior studies were Abbreviations:OPCC, outpatient palliative care consultation; HF, heart failure; ENABLE CHF-PC, Educate, Nurture, Advise Before Life Ends: Comprehensive Heartcare for Patients and Caregivers single-arm pilot study; PC, palliative care * Corresponding author. E-mail address:[email protected](R. Wells). https://doi.org/10.1016/j.hrtlng.2018.06.012 0147-9563 © 2018 Elsevier Inc. All rights reserved. Heart & Lung 47 (2018) 533 538 Contents lists available atScienceDirect Heart & Lung journal homepage:www.heartandlung.com frequently retrospective using a single site, 10,17 focusing on feasibil- ity, model development, or patient-reported outcomes of symptom- driven consultation. Other studies focused on patient and provider perspectives concerning the need for outpatient palliative care con- sultations for HF patients. 18,19 The study by Evangelista 10 demon- strated a reduction in symptom burden and depression and improvement in quality of life in HF patients receiving outpatient pal- liative care services. Rogers et al 20 found similar outcomes in their randomized controlled trial. Studies by Bekelman et al., 17 Smith et al., 21Rabow et al., 22and Gandesbery et al. 23found outpatient palli- ative care consultation services to be feasible and acceptable to HF patients. Additionally, recent reviews of palliative care identify unad- dressed palliative care needs especially concerning symptom burden in the HF population. 24 Furthermore, this care gap is particularly prevalent in diverse, underserved populations. 25To our knowledge, no studies to date have explored protocol- or trigger-driven outpa- tient palliative care consultations for HF patients. Given limited data, we sought to describe the assessments and treatment recommenda- tions made in protocol-driven OPCCs for advanced HF patients using PC clinic notes from an early PC pilot study. 26Secondary outcomes included comparison of baseline measures and demographic infor- mation between those who did and did not complete OPCC and regional variation in OPCC content. Methods Study design From April 1, 2014 to December 31, 2015, we enrolled 61 patients diagnosed with advanced HF and 48 family caregivers in a two-site, single-arm pilot study to determine the feasibility of ENABLE CHF-PC ( Educate, Nurture, Before Life Ends: Comprehen- sive Heart care for Patients and Caregivers), an intervention to deliver early concurrent PC. 26 Palliative care services aim to reduce distress and burden and improve quality of life. 27 Early palliative care occurs closer to the point of diagnosis and earlier in the disease trajectory at the same time as the patient receives traditional disease-related care. Both sites were cardiology clinics at larger academic medical centers. Darthmouth-Hitchcock Medi- cal Center (DHMC) in Lebanon, NH has a long-standing, embedded palliative care clinic located in close physical proximity to the car- diology clinic whereas the University of Alabama at Birmingham (UAB) Health System in Birmingham, AL has two palliative care clinic locations without an embedded care model. The study was approved by the Institutional Review Boards of UAB and DHMC. All patient and caregiver participants provided written informed consent. Fig. 1.Parent ENABLE: CHF-PC study schema. 534R. Wells et al. / Heart & Lung 47 (2018) 533 538 Sample Patients with advanced HF were identified and approached by study coordinators and recruitment staff. Patients were eligible if they presented with advanced HF as defined by NYHA Class III/IV or AHA/ACC Stage C/D HF. In addition to an advanced HF diagnosis, patient eligibility criteria were: (1) age 50, (2) English-speaking, and (3) access to telephone service (land-based or reliable cellular). Patients were ineligible if they had prior heart transplant or mechani- cal circulatory support implantation, non-correctable hearing loss, dementia or significant confusion (Callahan score of 3), 28 and a DSM-IV Axis I diagnosis or active substance use disorder. Family care- givers approached by study staff were identified by the eligible patients as“someone who knows you well and is involved with your medical care.”Trained community-based recruitment staff reviewed informed consent and study documents with eligible patients prior to study enrollment at local cardiology clinics. ENABLE: CHF-PC intervention The ENABLE CHF-PC intervention schema is provided inFig. 1. The parent ENABLE CHF-PC study was a single arm, two-site feasibility study exploring recruitment and retention of rural, racially-diverse patient-caregiver dyads and longitudinal patient-reported outcomes of symptom burden, depression/anxiety, quality of life, and caregiver burden. 26Main results of the parent study have been described previ- ously. 26The parent study ENABLE CHF-PC intervention included an in-person OPCC and 6 weekly telephone sessions to review theChart- ing Your Coursecurriculum. Implemented by nurses with specialty training in PC, the curriculum (based on the Chronic Care Model) 29 promoted patient self-management and decision support to encour- age, activate, and empower patients about their health outcomes. In addition to the weekly telephone sessions, patients were sched- uled for a single, in-person outpatient palliative care consultation at the palliative care outpatient clinic either at UAB or DHMC. This OPCC, the focus of this study, is highlighted by a box in the study schema (Fig. 1). With each ENABLE CHF-PC triggered OPCC, both sites followed site-specific standard practice for initial consultation using an established palliative care service. Modeled from the National Con- sensus Project guidelines, 30 a comprehensive outpatient palliative care consultation includes discussions or evaluations of illness under- standing, decision-making preferences, goals of care, physical/psy- cho-emotional symptoms, spirituality, advance care planning, and care coordination. Patients received standard heart failure-related medical care throughout the intervention process. Any additional PC visits were initiated by patient or clinician (PC or HF) request. Data collection Participants completed baseline questionnaires as part of the parent study26prior to the OPCC including: demographics, chronic illness care (Patient Assessment of Chronic Illness Care), 31 global health (Patient- Reported Outcomes Measurement System, Global Health Scale, Short Form version 1.0), 32anxiety/depression (Hospital Anxiety and Depression Scale), 33 and patient-reported healthcare utilization (investigator- designed survey of recent hospital days). Initial OPCC notes in the elec- tronic health record were printed and de-identified. OPCC content was assessed using modifications to a previously established coding scheme. 17 Data analysis Using an a priori coding scheme based on work by Bekelman et al. 17, we assessed the OPCC notes for evaluation of general health, social his- tory, and symptoms, general provider- and symptom-specifictreatment recommendations, and advance care planning recommendations. The previously established coding scheme 17was developed through retro- spective review of the content of palliative care clinic notes with a focus on provider-addressed topics and treatment actions. The coding scheme by Bekelman et al. was divided into evaluation, treatment, advance care planning, and care coordination categories. All staff (R.W., K.K., J.F.) were trained prior to the study by coding 2 non-study outpatient palliative care clinic notes and noting any cod- ing discrepancies. Discrepancies were adjudicated by the parent study principal investigator (M.B.), a palliative care expert, until con- sensus was reached. For auditing, six random OPCCs notes (two from each coder) were coded by an external coder (G.B.). Agreement per- centages were calculated for 72 total codes and ranged 0.5 1.0, with all disagreement being re-discussed until consensus was reached. Descriptive statistics were computed for patient demographics and the OPCC codes. Demographic differences, consult/no consult, and between-site differences were calculated using t-tests, Chi-square, or Fisher’s exact tests. All quantitative analyses were performed using SPSS version 24. Table 1 Characteristics of the patients who received (n= 39) and did not receive (n= 22) an OPCC. No OPCC OPCC P Effect size n%n% Site .0006 .97 Dartmouth 5 22.7 27 69.2 UAB 17 77.3 12 30.8 Age, M (SD) 69.1 8.7 71.5 11.7 .4015 .23 Gender .7911 .07 Female 10 45.5 20 51.3 Male 13 54.5 19 48.7 Hispanic/Latino .2772 .29 No 21 95.5 37 94.9 Race .6873 .11 White 17 77.3 32 82.1 Black 5 22.7 7 17.9 Religion .1051 .44 Protestant 18 81.8 22 56.4 Attend religious services .0198 .64 Regularly 13 59.1 16 41 Ever prayed for your own health .0175 .65 Yes 20 90.9 24 61.5 If yes, ever prayed in past month 18 90 19 79.2 .428 .24 Marital Status .1423 .4 Married or living with partner 14 63.6 24 61.5 Work status .1095 .43 Retired/Homemaker 8 36.4 26 66.7 Disability 9 40.9 9 23.1 Education .3566 .25 High school graduate or GED 13 59.1 13 33.3 Medical insurance .7346 .09 Medicare/Medicaid 6 27.3 8 20.5 Medicare + Private 14 63.6 25 64.1 Smoking habits .0807 .47 Never smoked 7 31.8 22 56.4 Ever used other tobacco products 1 0 No 18 81.8 30 76.9 Alcoholic drinks per week .8904 .04 None 19 86.4 30 76.9 Days in hospital, last 3 months, M (SD) 4.14 6.71 4.45 10.23 .8991 .03 Days in ICU, last 3 months, M (SD) .64 2.15 .84 3.48 .8029 .07 Times at ED, last 3 months, M (SD) .77 1.23 .66 1.19 .7237 .09 Seen by Palliative Care, last 3 months 0 0 10 25.6 .0059 .76 Completed an advanced directive .0279 .6 Yes 9 40.9 27 69.2 Do-not-resuscitate Order .3258 .26 Yes 5 22.7 16 41 Notes:P-values from t-test, Chi-squared, or Fisher’s exact tests, as appropriate; Effect size: Cohen’s d or d-equivalent (small: d»0.2, medium d»0.5, large d»0.8); OPCC = outpatient palliative care consultation, M = mean, SD = standard deviation, GED = General Educational Development, ICU = intensive care unit, ED = emergency department. R. Wells et al. / Heart & Lung 47 (2018) 533 538535 Results Of the 61 patients enrolled, 39 completed OPCC (n DHMC = 27, n UAB = 12). Reasons for non-completion included decline/no-show (n= 14, 64%), study withdrawal prior to completing the OPCC (n=6, 27%), and death (n= 2, 9%). Patients who withdrew from the parent study prior to the completion of an OPCC provided the following rea- sons: (1) overwhelmed, (2) not interested, (3) study not meeting needs, or (4) passive withdrawal (lost to contact).Table 1details par- ticipant characteristics. Patients who received OPCCs were mostly white (n= 32, 82%), married (n= 24, 62%), retired (n= 26, 67%), and female (n= 20, 51%). Patients recruited from DHMC were more likely to complete OPCC (n= 27, 69%,p= .0006). Additionally, patients receiving OPCCs were more likely to attend religious services (n= 16, 41%,p= .0198), have prayed for their own health (n= 24, 62%, p= .0175), have completed advance directives (n= 27, 69%,p= .0279), and received PC services in the preceding 3 months (n= 10, 26%, p= 0.0059).Table 2shows baseline patient-reported outcome (PROs) measures. Baseline patient-reported measures of activation, global health, anxiety, and depression measures did not differ between those who did or did not receive an OPCC. OPCC clinic notes characteristics General health, social history, and symptom evaluation Table 3shows the assessment and treatment code frequencies. The areas most frequently assessed in general health and social his- tory were history of close relationships (n= 35, 90%), advance direc- tive/code status (n= 33, 85%), family support (n= 33, 85%), and functional status (n= 30, 77%). Symptoms most frequently evaluated were mood (n= 35, 90%), breathlessness (n= 28, 72%), and chest pain (n= 24, 62%). Between-site differences (DHMC vs. UAB) included assessment of caregiver support (n= 27 vs.n=6,p= .001),financial status (n= 7 vs. n=0,p= .05), code status (n= 26 vs.n=7,p= .002), and prognostic understanding (n= 23 vs.n=4,p= .001). Treatment recommendations and advance care planning OPCC recommendations focused on care coordination (n= 13, 33%), specialty referrals (n= 12, 31%), counseling (n= 8, 21%), and ini- tiation of new medication(s) (n= 8, 21%). The most frequent advance care planning actions were code status discussions (n= 16, 41%), goals of care discussions (n= 22, 28%), and code status documentation (n= 14, 36%). No statistically significant differences in treatment recommenda- tions were found between sites; however, OPCCs performed at DHMC were more likely to include the topic of illness trajectory during advance care planning discussions (n DHMC = 8 vs. n UAB =0,p= .034). Discussion We examined OPCC notes at 2 geographically- and culturally-dis- tinct sites for patients enrolled in an early PC pilot study. The primary focus of the study was to identify commonalities and differences in the content of protocol-driven consultations. Medical and social his- tory, along with goals of care and code status discussions were fre- quently explored. The OPCCs addressed and treated common symptoms of mood disorders, pain, dyspnea, and fatigue as well as providing care coordination and referral to specialty services. We found differences by site for general health and social assessment and discussion of illness trajectory in the context of advance care planning. This study demonstrated that HF patients had significant symp- tom burden and unaddressed goals of care needs, consistent with extant literature. 10,17 25 Additionally, it appeared that protocol- driven consultations for HF patients focused on social issues (espe- cially caregiver dynamics), as well as symptoms. Such focus is not sur- prising given the early nature of OPCC herein, as well as the likelihood that each visit was an introductory encounter for rapport building. The sites differed in OPCC completion. While the procedure to connect patients to the outpatient PC clinic was consistent between sites, the physical location of the clinic differed with the DHMC out- patient clinic geographically co-located. The physical proximity of the clinic and familiarity with the location potentially contributed to patients’likelihood to keep the scheduled appointment. The embedd- edness of the DHMC clinic within the larger healthcare system might have also contributed to disparate rates of OPCCs through additional reminders by outside providers at non-OPCC appointments. However, another consideration for OPCC completion rate differences includes cultural and racial differences between sites. Specifically, UAB serves a more diverse, more religious 34patient population as indicated by the more racially-heterogeneous sample in the parent study. 26 The limited number of utilization trend studies examining disparities in outpatient palliative care indicate lower rates of palliative care and Table 2 Baseline measures patients who received (n= 39) and did not receive (n= 22) an OPCC. No OPCC OPCC P Effect size M (SD) M (SD) PROMIS, short form v.1.0 Global physical health T score 37.49 (8.31) 40.25 (8.28) .2166 .33 Global mental health T score 44.82 (8.5) 45.8 (8.27) .6613 .12 PACIC Patient activation 2.97 (1.07) 3.28 (1.24) .326 .26 Decision support 3.5 (1.02) 3.75 (0.97) .3427 .25 Goal setting 2.68 (1.09) 3.12 (0.96) .1109 .43 Problem solving 3.31 (1.36) 3.73 (0.94) .2029 .38 Care coordination 2.3 (1.13) 2.51 (1.03) .4683 .2 PACIC summary score 2.88 (0.99) 3.21 (0.78) .1566 .38 HADS Anxiety5.68 (3.48) 5.74 (3.54) .9477 .02 Depression 4.05 (4.05) 4.41 (3.9) .7306 .09 Notes:P-values from t-tests, Effect size: Cohen’s d (small: d»0.2, medium d»0.5, large d»0.8), OPCC = outpatient palliative care consultation, PROMIS = Patient-Reported Outcome Measurement System, v. = version, PACIC = Patient Assessment of Chronic Illness Care, HADS = Hospital Anxiety and Depression Scale. With PROMIS, higher scores indicate better functioning. PACIC scores range from 1 to 5. Higher PACIC scores indicate better self-management and support of chronic condition. HADS scale scoresrange from 0 to 21. Higher HADS scores indicate more severe symptoms. 536R. Wells et al. / Heart & Lung 47 (2018) 533 538 hospice use in African American and Hispanic patients. 35A review of racial disparities in palliative identified the following potential bar- riers: palliative care knowledge, cultural beliefs, or treatment prefer- ences. 24,25 Future work should include more in-depth examination of site-specific barriers to OPCC completion. OPCC characteristics differed between sites. Differences in assessing family support, code status determination, goals of care discussions and prognosis understanding prompted us to do a side-by-side com- parison of actual notes including assessing for clinic and provider dif- ferences. One pronounced difference in the clinical note was use of a standardized template. We identified that the note templates between the sites had different standardized components, consistent with prac- tice variation. Noted differences in OPCC content may have been related to documentation prompting. We conjecture that using a stan- dardized template based from the eight domains described by the National Consensus Project 30may help facilitate uniform assessment and documentation. The use of different templates at the two sites also highlighted future research design implications including the need for protocol training for all clinicians included in study and the use of fidelity checklists throughout the study process to ensure consistent delivery of palliative care components. Overall, this study highlighted the need for early outpatient pallia- tive care in advanced HF patients to address symptoms, goals of care, and advance care planning needs found in these OPCCs. Limitations Our study has several limitations. First, the sample size is small. Additionally, the sample population was fairly homogenous and does not reflect the general population with HF. This homogeneity limits generalizability, especially for minority populations disproportionally affected by HF who stand to benefit the most from OPCC. We also evaluated initial protocol-driven consultation notes, which might not explore all aspects of PC given timing limited to a single introductory instance. Conclusion Through this analysis, it appears that early triggered OPCCs dif- fered from clinically-driven consultations for patients with advanced HF. Ourfindings support the need to introduce PC into HF care con- currently to establish rapport. Earlier introduction of palliative care allows for rapport building as evidenced by the OPCC focus on social issues and dynamics. By establishing care before medical crisis or overwhelming symptom burden, patients and their caregivers are exposed to specialty palliative care providers and can establish thera- peutic relationships without the common misconception of PC serv- ices as only end of life services. 36 By establishing palliative care introductions earlier, HF patients might be more likely to utilize palli- ative care services throughout the duration of their disease to demon- strated benefit. 10,16,17,20 24 Although not symptom-driven, triggered OPCCs frequently addressed symptoms that resulted in earlier assess- ment and intervention. Additionally, while it is unclear if between- site differences are related to varied OPCC documentation templates versus actual clinical practices, the inclusion of clinical templates could facilitate the completion of an initial comprehensive evaluation. Next steps include longitudinal studies evaluating multiple PC con- sultation notes as well as studies evaluating the impact of timing of PC consultation on patient outcomes. Declarations Ethics approval and consent to participate The study protocol was approved by the institutional review boards of Dartmouth College (Lebanon, New Hampshire) and the Uni- versity of Alabama at Birmingham (Birmingham, Alabama). All patients provided written informed consent. Competing interests The authors declare that they have no competing interests. Table 3 Assessment and treatment code frequencies in OPCC clinic notes. Code N % Distribution of general health and social history evaluation Hospice 1 3 Specific medication review 1 3 Education 2 5 Cultural background 5 13 Financial status 7 18 Surrogate identified 10 26 Decisional capacity 11 28 Work history 25 64 Spirituality/Well-Being 26 67 Prognosis Understanding 27 69 Goals of care 29 74 Living arrangements 29 74 Substance abuse 29 74 Functional status 30 77 Advance directive status 33 85 Caregiver/Family support 33 85 Marital/Partner status 35 90 Distribution of symptom evaluation Dry mouth 1 3 Diarrhea 5 13 Constipation 6 15 Sleep problem 8 21 Grief & Bereavement 8 21 Edema/Ascites 9 23 Anorexia 9 23 Nausea/ Vomiting 10 26 Weight Loss/Dietary concerns 11 28 Cognitive/ Mental status 13 33 General pain 19 49 Fatigue 22 56 Chest pain 24 62 Breathlessness 28 72 Mood 35 90 Distribution of general health provider recommendations Medication increase 1 3 Non-cardiac Advanced therapeutics 1 3 Depression 1 3 Pain agreement 1 3 Medication- no changes 3 8 Cardiac advanced therapeutics 3 8 Family communication 3 8 Help with decision-making 3 8 Medication initiation 8 21 Counseling 8 21 Consult/ Referral 12 31 Care coordination 13 33 Distribution of symptom specific treatment Chest pain 1 3 Sleep problem 1 3 Depression 1 3 Fatigue 2 5 Breathlessness 2 5 General pain 3 8 Distribution of advance care planning actions Prognosis discussion 3 8 Hospice discussion 3 8 DNR discussion- full code specifics 4 10 Identify surrogate 7 18 Illness trajectory discussion 8 21 DNR discussion- without full code specifics 10 26 Goals of care discussion 11 28 General DNR discussion 16 41R. Wells et al. / Heart & Lung 47 (2018) 533 538537 Acknowledgments We would like to thank all of the clinicians and staff of Dart- mouth-Hitchcock Medical Center in the Department of Cardiology (especially Kathleen MacKay, RN, Virginia Beggs, MSN) and Depart- ment of Palliative Medicine (Lisa Stephens, MS, APRN, Amelia Cull- inan, MD) staff, UAB School of Nursing members (Connie White- Williams, PhD, RN, Amanda Erba, BSN, RN), Salpy Pamboukian, MD, Jose Tallaj, MD, UAB Department of Cardiology (especially Renzo Loy- aga-Rendon, MD and Deepak Acharya, MD), Elizabeth Kvale, MD and UAB Division of Geriatrics, Gerontology, and Palliative Care (espe- cially Rodney Tucker, MD, Cathy Casey, MSN) for supporting the study. We would also like to thank Julie Schach, James Mapson, Cyn- thia D Johnson, Cynthia Y Johnson, and Lori-Jane Higgins for assisting with recruitment and data collection. Most of all, we thank all patients for contributing their time and feedback. Funding This work was supported by a Pilot/Exploratory grant from the National Palliative Care Research Center. Dr. Dionne-Odom has received support from the NIH/National Institute of Nursing Research (1K99NR015903), the NIH/National Cancer Institute (2R25CA047888- 24), the National Palliative Care Research Center, and the American Cancer Society (RSG PCSM 124668). Rachel Wells, MSN, RN receives support from the Robert Wood Johnson Foundation Future of Nursing Scholars program. Dr. Deborah Ejem receives support from NIH/ National Institute of Nursing Research (3R01NR013665-02S1). Supplementary materials Supplementary material associated with this article can be found, in the online version, atdoi:10.1016/j.hrtlng.2018.06.012 . References 1.New York Heart Association: Criteria Committee.Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. Ninth ed. Boston, MA: Lippincott Williams and Wilkins; 1994. 2. American Heart Association. 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