Hostname: page-component-848d4c4894-wg55d Total loading time: 0 Render date: 2024-05-08T10:39:50.985Z Has data issue: false hasContentIssue false
  • English
  • Français

Advance care planning and palliative care in ACHD: the healthcare providers’ perspective

Published online by Cambridge University Press:  14 February 2020

Jill M. Steiner Open the ORCID record for Jill M. Steiner [Opens in a new window] ,
Erwin N. Oechslin ,
Gruschen Veldtman ,
Craig S. Broberg ,
Karen Stout ,
James Kirkpatrick  and
Adrienne H. Kovacs
Jill M. Steiner*
Affiliation:
Division of Cardiology, University of Washington, Seattle, WA, USA
Erwin N. Oechslin
Affiliation:
Toronto Congenital Cardiac Centre for Adults at Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada
Gruschen Veldtman
Affiliation:
Adult Congenital Heart Disease, Heart Centre, King Faisal Specialist Hospital and Research Centre, Riyadh, KSA
Craig S. Broberg
Affiliation:
Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA
Karen Stout
Affiliation:
Division of Cardiology, University of Washington, Seattle, WA, USA
James Kirkpatrick
Affiliation:
Division of Cardiology, University of Washington, Seattle, WA, USA
Adrienne H. Kovacs
Affiliation:
Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA
*
Author for correspondence: J. M. Steiner, MD, MS, Division of Cardiology, HSB AA522, 1959 NE Pacific St., Box 356422, Seattle, Washington98195, USA. Tel: +1 206 685 0526. E-mail: jills8@uw.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Advance care planning and palliative care are gaining recognition as critical care components for adults with CHD, yet these often do not occur. Study objectives were to evaluate ACHD providers’ 1) comfort managing patients’ physical symptoms and psychosocial needs and 2) perspectives on the decision/timing of advance care planning initiation and palliative care referral.

Methods:

Cross-sectional study of ACHD providers. Six hypothetical patients were described in case format, followed by questions regarding provider comfort managing symptoms, initiating advance care planning, and palliative care referral.

Results:

Fifty providers (72% physicians) completed surveys. Participants reported low levels of personal palliative care knowledge, without variation by gender, years in practice, or prior palliative care training. Providers appeared more comfortable managing physical symptoms and discussing prognosis than addressing psychosocial needs. Providers recognised advance directives as important, although the percentage who would initiate advance care planning ranged from 18 to 67% and referral to palliative care from 14 to 32%. Barriers and facilitators to discussing advance care planning with patients were identified. Over 20% indicated that advance care planning and end-of-life discussions are best initiated with the development of at least one life-threatening complication/hospitalisation.

Conclusions:

Providers noted high value in advance directives yet were themselves less likely to initiate advance care planning or refer to palliative care. This raises the critical questions of when, how, and by whom discussion of these important matters should be initiated and how best to support ACHD providers in these endeavours.

Keywords

ACHDpalliative careadvance care planninghealthcare providers
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 3 , March 2020 , pp. 402 - 408
Copyright
© The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Khairy, P, Ionescu-Ittu, R, Mackie, AS, Abrahamowicz, M, Pilote, L, Marelli, AJ. Changing mortality in congenital heart disease. J Am Coll Cardiol 2010; 56: 1149–1157. doi: 10.1016/j.jacc.2010.03.085CrossRefGoogle ScholarPubMed
Diller, G-P, Kempny, A, Alonso-Gonzalez, R, et al.Survival prospects and circumstances of death in contemporary adult congenital heart disease patients under follow-up at a large tertiary centre. Circulation 2015; 132: 2118–2125. doi: 10.1161/CIRCULATIONAHA.115.017202CrossRefGoogle Scholar
Zomer, AC, Vaartjes, I, Uiterwaal, CSPM, et al.Circumstances of death in adult congenital heart disease. Int J Cardiol 2012; 154: 168–172. doi: 10.1016/j.ijcard.2010.09.015CrossRefGoogle ScholarPubMed
Lui, GK, Saidi, A, Bhatt, AB, et al.Diagnosis and management of noncardiac complications in adults with congenital heart disease: a scientific statement from the American Heart Association. Circulation 2017; 136: e348–e392. doi: 10.1161/CIR.0000000000000535CrossRefGoogle ScholarPubMed
Sable, C, Foster, E, Uzark, K, et al.Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123: 1454–1485. doi: 10.1161/CIR.0b013e3182107c56CrossRefGoogle ScholarPubMed
Braun, LT, Grady, KL, Kutner, JS, et al.Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation 2016; 134:e198–e225. doi: 10.1161/CIR.0000000000000438CrossRefGoogle ScholarPubMed
Tobler, D, Greutmann, M, Colman, JM, Greutmann-Yantiri, M, Librach, SL, Kovacs, AH. Knowledge of and preference for advance care planning by adults with congenital heart disease. Am J Cardiol 2012; 109: 1797–1800. doi: 10.1016/j.amjcard.2012.02.027CrossRefGoogle ScholarPubMed
Deng, LX, Gleason, LP, Khan, AM, et al. Advance care planning in adults with congenital heart disease: a patient priority. Int J Cardiol 2017. doi: 10.1016/j.ijcard.2016.12.185CrossRefGoogle Scholar
Greutmann, M, Tobler, D, Colman, JM, Greutmann-Yantiri, M, Librach, SL, Kovacs, AH. Facilitators of and barriers to advance care planning in adult congenital heart disease. Congenit Heart Dis 2013. doi: 10.1111/chd.12025CrossRefGoogle Scholar
Tobler, D, Greutmann, M, Colman, JM, Greutmann-Yantiri, M, Librach, LS, Kovacs, AH. End-of-life in adults with congenital heart disease: a call for early communication. Int J Cardiol 2012; 155:383–387. doi: 10.1016/j.ijcard.2010.10.050CrossRefGoogle Scholar
Tobler, D, Greutmann, M, Colman, JM, Greutmann-Yantiri, M, Librach, LS, Kovacs, AH. End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied. Palliat Med 2012. doi: 10.1177/0269216311407694CrossRefGoogle Scholar
Nelson, JE, Curtis, JR, Mulkerin, C, et al.Choosing and using screening criteria for palliative care consultation in the ICU: a report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board. Crit Care Med 2013; 41:2318–2327. doi: 10.1097/CCM.0b013e31828cf12cCrossRefGoogle ScholarPubMed
Lampert, R, Hayes, DL, Annas, GJ, et al.HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Hear Rhythm 2010; 7: 1008–1026. doi: 10.1016/j.hrthm.2010.04.033CrossRefGoogle ScholarPubMed
Hook, CC, Mueller, PS. The Terri Schiavo saga: the making of a tragedy and lessons learned. Mayo Clin Proc. 2005; 80: 1449–1460. doi: 10.4065/80.11.1449CrossRefGoogle ScholarPubMed
Kramer, DB, Matlock, DD, Buxton, AE, et al.Implantable cardioverter-defibrillator use in older adults: proceedings of a Hartford Change AGEnts Symposium. Circ Cardiovasc Qual Outcomes 2015; 8: 437–446. doi: 10.1161/CIRCOUTCOMES.114.001660CrossRefGoogle ScholarPubMed
Halperin, JL, Williams, ES, Fuster, V, et al.ACC 2015 core cardiovascular training statement (COCATS 4) (Revision of COCATS 3): a report of the ACC Competency Management Committee. J Am Coll Cardiol 2015; 65: 1721–1723. doi: 10.1016/j.jacc.2015.03.017CrossRefGoogle Scholar
Warnes, CA, Bhatt, AB, Daniels, CJ, Gillam, LD, Stout, KK. COCATS 4 Task Force 14: Training in the Care of Adult Patients With Congenital Heart Disease. http://www.onlinejacc.org/content/accj/65/17/1887.full.pdf. Accessed June 16, 2019.Google Scholar
Crousillat, DR, Keeley, BR, Buss, MK, Zheng, H, Polk, DM, Schaefer, KG. Palliative care education in cardiology. J Am Coll Cardiol 2018. doi: 10.1016/j.jacc.2018.02.019CrossRefGoogle Scholar
Diop, MS, Rudolph, JL, Zimmerman, KM, Richter, MA, Skarf, LM. Palliative care interventions for patients with heart failure: a systematic review and meta-analysis. J Palliat Med 2017; 20: 84–92. doi: 10.1089/jpm.2016.0330CrossRefGoogle ScholarPubMed
Linnemann, RW, Friedman, D, Altstein, LL, et al.Advance care planning experiences and preferences among people with cystic fibrosis. J Palliat Med 2019; 22: 138–144. doi: 10.1089/jpm.2018.0262CrossRefGoogle ScholarPubMed
Dellon, EP, Helms, SW, Hailey, CE, et al.Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care. Pediatr Pulmonol 2018; 53: 1218–1224. doi: 10.1002/ppul.24073CrossRefGoogle ScholarPubMed
Braithwaite, M, Philip, J, Tranberg, H, et al. End of life care in CF: patients, families and staff experiences and unmet needs. J Cyst Fibros 2011. doi: 10.1016/j.jcf.2011.03.002CrossRefGoogle Scholar
Lin, EY, Cohen, HW, Bhatt, AB, et al.Predicting outcomes using the heart failure survival score in adults with moderate or complex congenital heart disease. Congenit Heart Dis 2015; 10: 387–395. doi: 10.1111/chd.12229CrossRefGoogle ScholarPubMed
Stout, KK, Daniels, CJ, Chair, V, et al.2018 AHA/ACC guideline for the management of adults with congenital heart disease. Circulation 2019; 139: e698–e800. doi: 10.1161/CIR.0000000000000603Google ScholarPubMed
Steiner, JM, Kovacs, AH. Adults with congenital heart disease – facing morbidities and uncertain early mortality. Prog Pediatr Cardiol 2018. doi: 10.1016/j.ppedcard.2018.01.006CrossRefGoogle Scholar
Sillman, C, Morin, J, Thomet, C, et al.Adult congenital heart disease nurse coordination: essential skills and role in optimizing team-based care a position statement from the International Society for Adult Congenital Heart Disease (ISACHD). Int J Cardiol 2017; 229: 125–131. doi: 10.1016/j.ijcard.2016.10.051CrossRefGoogle Scholar
Robinson, EM, Cage, W, Erler, K, et al.Structure, operation, and experience of clinical ethics consultation 2007–2013: a report from the Massachusetts General Hospital Optimum Care Committee. J Clin Ethics 2017; 28: 137–152. http://www.ncbi.nlm.nih.gov/pubmed/28614077. Accessed January 19, 2019.Google ScholarPubMed
Wasson, K, Anderson, E, Hagstrom, E, McCarthy, M, Parsi, K, Kuczewski, M. What ethical issues really arise in practice at an academic medical center? A quantitative and qualitative analysis of clinical ethics consultations from 2008 to 2013. HEC Forum 2016; 28: 217–228. doi: 10.1007/s10730-015-9293-5CrossRefGoogle ScholarPubMed
Siouta, N, Van Beek, K, Van Der Eerden, ME, et al.Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease. BMC Palliat Care 2016; 15: 56. doi: 10.1186/s12904-016-0130-7CrossRefGoogle ScholarPubMed
Smallwood, N, Moran, T, Thompson, M, Eastman, P, Le, B, Philip, J. Integrated respiratory and palliative care leads to high levels of satisfaction: a survey of patients and carers. BMC Palliat Care 2019; 18: 7. doi: 10.1186/s12904-019-0390-0CrossRefGoogle ScholarPubMed
Smallwood, N, Thompson, M, Warrender-Sparkes, M, et al. Integrated respiratory and palliative care may improve outcomes in advanced lung disease. ERJ Open Res 2018; 4: 00102-2017. doi: 10.1183/23120541.00102-2017CrossRefGoogle Scholar
Clowse, MEB, Eudy, AM, Kiernan, E, et al.The prevention, screening and treatment of congenital heart block from neonatal lupus: a survey of provider practices. Rheumatology (Oxford) 2018; 57 (Suppl 5): v9–v17. doi: 10.1093/rheumatology/key141CrossRefGoogle ScholarPubMed
Balkin, EM, Kirkpatrick, JN, Kaufman, B, et al.Pediatric cardiology provider attitudes about palliative care: a Multicenter Survey Study. Pediatr Cardiol 2017; 38: 1324–1331. doi: 10.1007/s00246-017-1663-0CrossRefGoogle ScholarPubMed
Shillinglaw, B, Viera, AJ, Edwards, T, Simpson, R, Sheridan, SL. Use of global coronary heart disease risk assessment in practice: a cross-sectional survey of a sample of U.S. physicians. BMC Health Serv Res 2012; 12: 20. doi: 10.1186/1472-6963-12-20CrossRefGoogle ScholarPubMed
Arndt, BG, Beasley, JW, Watkinson, MD, et al.Tethered to the EHR: primary care physician workload assessment using EHR event log data and time-motion observations. Ann Fam Med 2017; 15: 419–426. doi: 10.1370/afm.2121CrossRefGoogle ScholarPubMed
Dugdale, DC, Epstein, R, Pantilat, SZ. Time and the patient-physician relationship. J Gen Intern Med 1999; 14 (Suppl 1): S34–S40. doi: 10.1046/J.1525-1497.1999.00263.XCrossRefGoogle ScholarPubMed