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Holistic Care and Palliation

  • Matthias Greutmann
  • Gudrun Theile
  • Daniel Tobler
Chapter
Part of the Congenital Heart Disease in Adolescents and Adults book series (CHDAA)

Abstract

Adults with congenital heart disease have been the recipients of heroic surgical and medical care over the years. Although a lot of effort is made to improve survival and to find novel treatment concepts for these patients, we have to accept that for many patients, no viable treatment options will be available and many will be at high risk of dying as young and middle-aged adults. Although our ability to ‘cure’ these patients may be limited, our ability to support our patients with non-strictly ‘medical’ measures is substantial and may have an important impact on patients’ quality of life and a self-determined and dignified end of life. Hence in this chapter, we will focus on measures of patient support, advance care planning and end-of-life care—summarized as comprehensive care. The concept of comprehensive care combines cardiac care, supportive care and measures of palliative care adjusted and matched to the individual patient’s stage of disease and circumstances of living.

Keywords

End-of-life care Advance care planning Advance directives Palliative care Comprehensive care Prognosis Substitute decision-maker Supportive care 

References

  1. 1.
    Marelli AJ, Ionescu-Ittu R, Mackie AS, Guo L, Dendukuri N, Kaouache M. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation. 2014;130(9):749–56.CrossRefPubMedGoogle Scholar
  2. 2.
    Padrutt M, Bracher I, Bonassin F, Santos Lopes B, Gruner C, Stampfli SF, et al. Impact of growing cohorts of adults with con-genital heart disease on clinical workload: a 20-year experience at a tertiary care centre. Swiss Med Wkly. 2017;147:w14443.PubMedGoogle Scholar
  3. 3.
    Greutmann M, Tobler D. Changing epidemiology and mortality in adult congenital heart disease: looking into the future. Futur Cardiol. 2012;8(2):171–7.CrossRefGoogle Scholar
  4. 4.
    Diller GP, Kempny A, Alonso-Gonzalez R, Swan L, Uebing A, Li W, 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(22):2118–25.CrossRefPubMedGoogle Scholar
  5. 5.
    Greutmann M, Tobler D, Kovacs AH, Greutmann-Yantiri M, Haile SR, Held L, et al. Increasing mortality burden among adults with complex congenital heart disease. Congenit Heart Dis. 2015;10(2):117–27.CrossRefPubMedGoogle Scholar
  6. 6.
    Goodlin SJ. Palliative care in congestive heart failure. J Am Coll Cardiol. 2009;54(5):386–96.CrossRefPubMedGoogle Scholar
  7. 7.
    Tobler D, de Stoutz N, Greutmann M. Supportive and palliative care for adults dying from congenital heart defect. Curr Opin Support Palliat Care. 2011;5(3):291–6.CrossRefPubMedGoogle Scholar
  8. 8.
    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;8(4):281–8.CrossRefPubMedGoogle Scholar
  9. 9.
    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(3):383–7.CrossRefPubMedGoogle Scholar
  10. 10.
    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;26(1):72–9.CrossRefPubMedGoogle Scholar
  11. 11.
    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(12):1797–800.CrossRefPubMedGoogle Scholar
  12. 12.
    Stark J. Do we really correct congenital heart defects? J Thorac Cardiovasc Surg. 1989;97(1):1–9.PubMedGoogle Scholar
  13. 13.
    Kovacs AH, Silversides C, Saidi A, Sears SF. The role of the psychologist in adult congenital heart disease. Cardiol Clin. 2006;24(4):607–18. viCrossRefPubMedGoogle Scholar
  14. 14.
    Kovacs AH, Landzberg MJ, Goodlin SJ. Advance care planning and end-of-life management of adult patients with congenital heart disease. World J Pediatr Congenit Heart Surg. 2013;4(1):62–9.CrossRefPubMedGoogle Scholar
  15. 15.
    Badger JM. Factors that enable or complicate end-of-life transitions in critical care. Am J Crit Care. 2005;14(6):513–21.PubMedGoogle Scholar
  16. 16.
    Lee DS, Austin PC, Rouleau JL, Liu PP, Naimark D, Tu JV. Predicting mortality among patients hospitalized for heart failure: derivation and validation of a clinical model. JAMA. 2003;290(19):2581–7.CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Levy WC, Mozaffarian D, Linker DT, Sutradhar SC, Anker SD, Cropp AB, et al. The Seattle Heart Failure Model: prediction of survival in heart failure. Circulation. 2006;113(11):1424–33.CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Matthias Greutmann
    • 1
  • Gudrun Theile
    • 2
  • Daniel Tobler
    • 3
  1. 1.University Heart Center, CardiologyUniversity Hospital ZurichZurichSwitzerland
  2. 2.Competence Center for Palliative CareUniversity Hospital ZurichZurichSwitzerland
  3. 3.Department of CardiologyUniversity Hospital BaselBaselSwitzerland

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