Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: An exploratory study

Pediatric Critical Care Medicine

Volumn 15, Issue 4, 2014, Pages 336-342

  Blume, Elizabeth D ^a   Balkin, Emily Morell ^a   Aiyagari, Ranjit ^b   Ziniel, Sonja ^a   Beke, Dorothy M ^a   Thiagarajan, Ravi ^a   Taylor, Laura ^b   Kulik, Thomas ^a   Pituch, Kenneth ^b   Wolfe, Joanne ^c  

^a BOSTON CHILDREN S HOSPITAL   (United States)

^b UNIVERSITY OF MICHIGAN   (United States)

^c DANA FARBER CANCER INSTITUTE   (United States)

Author keywords

Bereavement; Congenital heart disease; End of life care; Extracorporeal membrane oxygenation; Palliative care; Pediatric cardiac intensive care

Indexed keywords

ADOLESCENT; ADULT; ADVANCED HEART DISEASE; ASSISTED CIRCULATION; CHILD; CHILDHOOD DISEASE; CLINICAL ARTICLE; CROSS-SECTIONAL STUDY; DYSPNEA; FATIGUE; FEEDING DIFFICULTY; FEMALE; HEART DISEASE; HOSPITALIZATION; HUMAN; INTERPERSONAL COMMUNICATION; MALE; PARENTAL ATTITUDE; PILOT STUDY; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SLEEP DISORDER; SURVIVAL; TERMINAL CARE; TIME OF DEATH; ATTITUDE TO DEATH; BEREAVEMENT; CLINICAL TRIAL; DEATH; EATING DISORDER; HEALTH CARE QUALITY; HEART DISEASES; INFANT; MIDDLE AGED; MULTICENTER STUDY; NEWBORN; PAIN; PALLIATIVE THERAPY; PARENT; PRESCHOOL CHILD; PSYCHOLOGY; TREATMENT WITHDRAWAL; YOUNG ADULT;

ADOLESCENT; ADULT; ATTITUDE TO DEATH; BEREAVEMENT; CHILD; CHILD, PRESCHOOL; CROSS-SECTIONAL STUDIES; DEATH; DYSPNEA; EATING DISORDERS; FATIGUE; FEMALE; HEART DISEASES; HUMANS; INFANT; INFANT, NEWBORN; MALE; MIDDLE AGED; PAIN; PALLIATIVE CARE; PARENTS; QUALITY OF HEALTH CARE; QUALITY OF LIFE; TERMINAL CARE; WITHHOLDING TREATMENT; YOUNG ADULT;

EID: 84900555072     PISSN: 15297535     EISSN: 19473893     Source Type: Journal    
DOI: 10.1097/PCC.0000000000000072     Document Type: Review

References (18)

1. Mathews TJ, Minino AM, Osterman MJ, et al: Annual summary of vital statistics: 20 8. Pediatrics 2011; 127:146-157
2. Morell E, Wolfe J, Scheurer M, et al: Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med 2012; 166:745-748
3. Wolfe J, Grier HE, Klar N, et al: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342:326-333 (Pubitemid 30075247)
4. Hupcey JE, Penrod J, Fenstermacher K: Review article: A model of palliative care for heart failure. Am J Hosp Palliat Care 2009; 26:399-404
5. O'Leary N: The comparative palliative care needs of those with heart failure and cancer patients. Curr Opin Support Palliat Care 2009; 3:241-246
6. Wolfe J, Klar N, Grier HE, et al: Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. JAMA 2000; 284:2469-2475
7. Burns JP, Mello MM, Studdert DM, et al: Results of a clinical trial on care improvement for the critically ill. Crit Care Med 2003; 31:2107-2117 (Pubitemid 37011689)
8. Burns JP, Mitchell C, Griffith JL, et al: End-of-life care in the pediatric intensive care unit: Attitudes and practices of pediatric critical care physicians and nurses. Crit Care Med 2001; 29:658-664 (Pubitemid 32225313)
9. Mello MM, Burns JP, Truog RD, et al: Decision making and satisfaction with care in the pediatric intensive care unit: Findings from a controlled clinical trial. Pediatr Crit Care Med 2004; 5:40-47
10. Studdert DM, Burns JP, Mello MM, et al: Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics 2003; 112:553-558 (Pubitemid 37082106)
11. Harris PA, Taylor R, Thielke R, et al: Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42:377-381
12. Stata Statistical Software: Release 12 [Computer Program]. College Station, TX, StataCorp, LP, 2011
13. Feudtner C, Kang TI, Hexem KR, et al: Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics 2011; 127:1094-1101
14. Meert KL, Eggly S, Pollack M, et al; National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network: Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit. Pediatr Crit Care Med 2008; 9:2-7
15. Heyland DK, Rocker GM, Dodek PM, et al: Family satisfaction with care in the intensive care unit: Results of a multiple center study. Crit Care Med 2002; 30:1413-1418 (Pubitemid 34756217)
16. Meert KL, Thurston CS, Sarnaik AP: End-of-life decision-making and satisfaction with care: Parental perspectives. Pediatr Crit Care Med 2000; 1:179-185
17. Mack JW, Hilden JM, Watterson J, et al: Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 2005; 23:9155-9161
18. McGraw SA, Truog RD, Solomon MZ, et al: "I was able to still be her mom"-parenting at end of life in the pediatric intensive care unit. Pediatr Crit Care Med 2012; 13:e350-e356