End-of-life care in hospitalized adults with complex congenital heart disease: Care delayed, care denied

Palliative Medicine

Volumn 26, Issue 1, 2012, Pages 72-79

  Tobler, Daniel ^a   Greutmann, Matthias ^a   Colman, Jack M ^a,b   Greutmann Yantiri, Mehtap ^a   Librach, Lawrence S ^b   Kovacs, Adrienne H ^a  

^a UNIVERSITY HEALTH NETWORK   (Canada)

^b UNIVERSITY OF TORONTO   (Canada)

Author keywords

Cardiac death; congenital; heart defects; palliative care; resuscitation

Indexed keywords

ADULT; ARTICLE; CAUSE OF DEATH; CLINICAL ARTICLE; CONGENITAL HEART DISEASE; CONTROLLED STUDY; DEATH; DYING; FEMALE; HOSPITALIZATION; HUMAN; MALE; MEDICAL DOCUMENTATION; PALLIATIVE THERAPY; PATIENT CARE; TERMINAL CARE; THERAPY DELAY; TREATMENT FAILURE;

ADOLESCENT; ADULT; AGED; CAUSE OF DEATH; COHORT STUDIES; COMMUNICATION; FEMALE; HEART DISEASES; HOSPITALIZATION; HUMANS; MALE; MIDDLE AGED; QUALITY OF HEALTH CARE; RETROSPECTIVE STUDIES; TERMINAL CARE; YOUNG ADULT;

EID: 84555189365     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216311407694     Document Type: Article

References (32)

1. Warnes CA. The adult with congenital heart disease: born to be bad?. J Am Coll Cardiol. 2005 ; 46: 1-8 (Pubitemid 40905121)
2. Verheugt CL, Uiterwaal CSPM, Van Der Velde ET, Meijboom FJ, Pieper PG, Van Dijk APJ, et al. Mortality in adult congenital heart disease. Eur Heart J. 2010 ; 31: 1220-1229
3. Oechslin EN, Harrison DA, Connelly MS, Webb GD, Siu SC. Mode of death in adults with congenital heart disease. Am J Cardiol. 2000 ; 86: 1111-1116
4. Nieminen HP, Jokinen EV, Sairanen HI. Causes of late deaths after pediatric cardiac surgery: a population-based study. J Am Coll Cardiol. 2007 ; 50: 1263-1271 (Pubitemid 47405126)
5. Goodlin SJ. End-of-life care in heart failure. Curr Cardiol Rep. 2009 ; 11: 184-191
6. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. J Am Med Assoc. 2008 ; 300: 1665-1673
7. Goodlin SJ, Quill TE, Arnold RM. Communication and decision-making about prognosis in heart failure care. J Card Fail. 2008 ; 14: 106-113 (Pubitemid 351312888)
8. Goodlin SJ. Palliative care in congestive heart failure. J Am Coll Cardiol. 2009 ; 54: 386-396
9. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, et al. ACC/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: 2395-2451
10. Myerburg RJ, Kessler KM, Castellanos A. Sudden cardiac death. Structure, function, and time-dependence of risk. Circulation. 1992 ; 85: I2-10
11. 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
12. Engelfriet P, Boersma E, Oechslin E, Tijssen J, Gatzoulis MA, Thilén U, et al. The 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: 2325-2333 (Pubitemid 41541399)
13. Badger JM. Factors that enable or complicate end-of-life transitions in critical care. Am J Crit Care. 2005 ; 14: 513-521
14. Ablett JR, Jones RSP. Resilience and well-being in palliative care staff: a qualitative study of hospice nurses' experience of work. Psychooncology. 2007 ; 16: 733-740 (Pubitemid 47249175)
15. Rose JH, O'Toole EE, Dawson NV, Thomas C, Connors AF, Wenger NS, et al. Age differences in care practices and outcomes for hospitalized patients with cancer. J Am Geriatr Soc. 2000 ; 48: S25 - S32
16. Hakim RB, Teno JM, Harrell FE, Knaus WA, Wenger N, Phillips RS, et al. Factors associated with do-not-resuscitate orders: patients' preferences, prognoses, and physicians' judgments. SUPPORT Investigators. Study to Understand prognoses and preferences for outcomes and risks of treatment. Ann Intern Med. 1996 ; 125: 284-293
17. Gibbs LM, Addington-Hall J, Gibbs JS. Dying from heart failure: lessons from palliative care. Many patients would benefit from palliative care at the end of their lives. Br Med J. 1998 ; 317: 961-962
18. 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. J Am Med Assoc. 2003 ; 290: 2581-2587 (Pubitemid 37443288)
19. 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: 1424-1433 (Pubitemid 43739439)
20. Hunt SA, Abraham WT, Chin MH, Feldman AM, Francis GS, Ganiats TG, et al. ACC/AHA 2005 guideline update for the diagnosis and management of chronic heart failure in the adult: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Update the 2001 Guidelines for the Evaluation and Management of Heart Failure): developed in collaboration with the American College of Chest Physicians and the International Society for Heart and Lung Transplantation: endorsed by the Heart Rhythm Society. Circulation. 2005 ; 112: e154 - e235
21. Arnold JMO, Liu P, Demers C, Dorian P, Giannetti N, Haddad H, et al. Canadian Cardiovascular Society consensus conference recommendations on heart failure 2006: diagnosis and management. Can J Cardiol. 2006 ; 22: 23-45
22. Selman L, Harding R, Beynon T, Hodson F, Coady E, Hazeldine C, et al. Improving end-of-life care for patients with chronic heart failure: 'Let's hope it'll get better, when I know in my heart of hearts it won't'. Heart. 2007 ; 93: 963-967 (Pubitemid 47122049)
23. Cherlin E, Fried T, Prigerson HG, Schulman-Green D, Johnson-Hurzeler R, Bradley EH. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said?. J Palliat Med. 2005 ; 8: 1176-1185 (Pubitemid 43010550)
24. Krumholz HM, Phillips RS, Hamel MB, Teno JM, Bellamy P, Broste SK, et al. Resuscitation preferences among patients with severe congestive heart failure: results from the SUPPORT project. Study to understand prognoses and preferences for outcomes and risks of treatments. Circulation. 1998 ; 98: 648-655 (Pubitemid 28387491)
25. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest. 2005 ; 127: 2188-2196
26. Curtis JR, Patrick DL, Caldwell ES, Collier AC. Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Arch Intern Med. 2000 ; 160: 1690-1696 (Pubitemid 30367909)
27. Meeker MA, Jezewski MA. Family decision making at end of life. Palliat Support Care. 2005 ; 3: 131-142
28. Bourke SJ, Doe SJ, Gascoigne AD, Heslop K, Fields M, Reynolds D, et al. An integrated model of provision of palliative care to patients with cystic fibrosis. Palliat Med. 2009 ; 23: 512-517
29. 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. 2010 ;:
30. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000 ; 132: 825-832 (Pubitemid 30317799)
31. Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol. 2010 ; 28: 4819-4824
32. Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R. Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. Lancet. 2002 ; 359: 650-656 (Pubitemid 34203764)