Joseph's wishes: Ethical decision-making in Duchenne muscular dystrophy

Mount Sinai Journal of Medicine

Volumn 77, Issue 4, 2010, Pages 394-397

  Penner, Leigh ^a   Cantor, Rabbi Mollie ^a   Siegel, Linda ^b  

^a Mount Sinai Kravis Children's Hospital   (United States)

^b ALBERT EINSTEIN COLLEGE OF MEDICINE   (United States)

Author keywords

Decision making; Duchenne muscular dystrophy; Ethics; Palliative care; Pediatric

Indexed keywords

ADULT; CASE REPORT; DUCHENNE MUSCULAR DYSTROPHY; ETHICAL DECISION MAKING; FAMILY; HEALTH CARE; HUMAN; MALE; PALLIATIVE THERAPY; PRIMARY HEALTH CARE; SHORT SURVEY; TERMINAL CARE;

COMMUNICATION; DECISION MAKING; ETHICS, MEDICAL; FATAL OUTCOME; HUMANS; MALE; MUSCULAR DYSTROPHY, DUCHENNE; PALLIATIVE CARE; PATIENT SATISFACTION; PHYSICIAN-PATIENT RELATIONS; YOUNG ADULT;

EID: 77954962221     PISSN: 00272507     EISSN: 19317581     Source Type: Journal    
DOI: 10.1002/msj.20196     Document Type: Short Survey

References (9)

1. Birnkrant DJ. New challenges in the management of prolonged survivors of pediatric neuromuscular diseases: a pulmonologist's perspective. Pediatr Pulmonol 2006; 41: 1113-1117.
2. Erby LH, Rushton C, Geller G. "My son is still walking": stages of receptivity to discussions of advance care planning among parents of sons with Duchenne muscular dystrophy. Semin Pediatr Neurol 2006; 13: 132-140.
3. Feudtner C, Christakis DA, Zimmerman FJ, et al. Characteristics of deaths occurring in children's hospitals: implications of support care services. Pediatrics 2002; 109: 887-893. (Pubitemid 34493357)
4. Hilton T, Orr RD, Perkin RM, Ashwal S. End of life care in Duchenne muscular dystrophy. Pediatr Neurol 1993; 9: 165-177. (Pubitemid 23199462)
5. Lyon ME, Garvie PA, McCarter R, et al. Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics 2009; 123: e199-e206.
6. Parker D, Maddocks I, Stern LM. The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy. J Paediatr Child Health 1999; 35: 245-250. (Pubitemid 29282271)
7. Pousset G, Bilsen J, DeWilde J, et al. Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics 2009; 124: e1142-e1148.
8. Simonds AK. Respiratory support for the severely handicapped child with neuromuscular disease: ethics and practicality. Semin Respir Crit Care Med 2007; 28: 342-354.
9. Wiener L, Ballard E, Brennan T, et al. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med 2008; 11: 1309-1313.