As a result of advances in the diagnosis and treatment of congenital heart disease (CHD), it is now adult care providers, rather than pediatric providers, who are faced with the majority of patient deaths. Effective advance care planning and end-of-life (EOL) care require open communication and collaboration in order to benefit patients, family members, and clinicians. Published guidelines recommend early completion of advance directives and addressing EOL issues in routine care. This article reviews the pattern of shifting CHD mortality, current knowledge regarding advanced care planning and EOL discussions with adults with CHD (ACHD), and guidelines to facilitate and optimize these important discussions.
GreutmannMToblerD. Changing epidemiology and mortality in adult congenital heart disease: looking into the future. Future Cardiol. 2012;8(2):171–177.
2.
KhairyPIonescu-IttuRMackieASAbrahamowiczMPiloteLMarelliAJ. Changing mortality in congenital heart disease. J Am Coll Cardiol. 2010;56(14):1149–1157.
3.
GilboaSMSalemiJLNembhardWNFixlerDECorreaA. Mortality resulting from congenital heart disease among children and adults in the United States, 1999 to 2006. Circulation. 2010;122(22):2254–2263.
4.
WarnesCAWilliamsRGBashoreTMACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease: Executive Summary: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (writing committee to develop guidelines for the management of adults with congenital heart disease). Circulation. 2008;118(23):2395–2451.
5.
SableCFosterEUzarkKBest 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(13):1454–1485.
6.
WarnesCA. The adult with congenital heart disease: born to be bad?J Am Coll Cardiol. 2005;46(1):1–8.
7.
MoonsPBovijnLBudtsWBelmansAGewilligM. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation. 2010;122(22):2264–2272.
8.
VerheugtCLUiterwaalCSPMVan Der VeldeETMortality in adult congenital heart disease. Eur Heart J. 2010;31(10):1220–1229.
9.
EngelfrietPBoersmaEOechslinEThe spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease. Eur Heart J. 2005;26(21):2325–2333.
10.
OechslinENHarrisonDAConnellyMSWebbGDSiuSC. Mode of death in adults with congenital heart disease. Am J Cardiol. 2000;86(10):1111–1116.
11.
NieminenHPJokinenEVSairanenHI. Causes of late deaths after pediatric cardiac surgery: a population-based study. J Am Coll Cardiol. 2007;50(13):1263–1271.
12.
PillutlaPShettyKDFosterE. Mortality associated with adult congenital heart disease: trends in the US population from 1979 to 2005. Am Heart J. 2009;158(5):874–879.
13.
HarrisonJLSilversidesCKOechslinENKovacsAH. Healthcare needs of adults with congenital heart disease: study of the patient perspective. J Cardiovasc Nurs. 2011;26(6):497–503.
14.
SaidiASPaolilloJFrickerFJSearsSFKovacsAH. Biomedical and psychosocial evaluation of “cured” adults with congenital heart disease. Congenit Heart Dis. 2007;2(1):44–54.
15.
ReidGJWebbGDBarzelMMcCrindleBWIrvineMJSiuSC. Estimates of life expectancy by adolescents and young adults with congenital heart disease. J Am Coll Cardiol. 2006;48(2):349–355.
16.
ToblerDGreutmannMColmanJMGreutmann-YantiriMLibrachSLKovacsAH. Knowledge of and preference for advance care planning by adults with congenital heart disease. Am J Cardiol. 2012;109(12):1797–1800.
17.
ToblerDGreutmannMColmanJMGreutmann-YantiriMLibrachLSKovacsAH. End-of-life in adults with congenital heart disease: a call for early communication. Int J Cardiol. 2012;155(3):383–387.
18.
ToblerDGreutmannMColmanJMGreutmann-YantiriMLibrachLSKovacsAH. End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied. Palliat Med. 2012;26(1):72–79.
19.
CaldwellPHArthurHMDemersC. Preferences of patients with heart failure for prognosis communication. Can J Cardiol. 2007;23(10):791–796.
20.
American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106(2 pt 1):351–357.
21.
McCabeMARushtonCHGloverJMurrayMGLeikinS. Implications of the patient self-determination act: guidelines for involving adolescents in medical decision making. J Adolesc Health. 1996;19(5):319–324.
22.
ToblerDGreutmannMColmanJMGreutmann-YantiriMLibrachLSKovacsAH.End of life in adults with congenital heart disease: a call for early communication. Int J Cardiol. 2012;155(3):383–387.
23.
LevinsonWKaoAKubyAThistedRA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med. 2005;20(6):531–535.
24.
GoodlinSJQuillTEArnoldRM. Communication and decision-making about prognosis in heart failure care. J Card Fail. 2008;14(2):106–113.
25.
MalenkaDJBaronJAJohansenSWahrenbergerJWRossJM. The framing effect of relative and absolute risk. J Gen Intern Med. 1993;8(10):543–548.
26.
GoodlinSCasselEJ. Coping with patients’ deaths. In: BeattieJGoodlnSJ, eds. Supportive Care in Heart Failure. Oxford, UK: Oxford University Press; 2008.
27.
ChauNGZimmermannCMaCTabackNKrzyzanowskaMK. Bereavement practices of physicians in oncology and palliative care. Arch Intern Med. 2009;169(10):963–971.
28.
CornBWShabtaiEMerimskyODo oncologists engage in bereavement practices? A survey of the Israeli Society of Clinical Oncology and Radiation Therapy (ISCORT). Oncologist. 2010;15(3):317–326.
29.
KaneGC. A dying art?: The doctor’s letter of condolence. Chest. 2007;131(4):1245–1247.
30.
BorasinoSMorrisonWSilbermanJNelsonRMFeudtnerC. Physicians’ contact with families after the death of pediatric patients: a survey of pediatric critical care practitioners’ beliefs and self-reported practices. Pediatrics. 2008;122(6):e1174–e1178.
31.
WolfsonRMenkinE. Writing a condolence letter. J Palliat Med. 2003;6(1):77–78.
