Is There a Role for Palliative Care in Progressive Pediatric Neuromuscular Diseases? The Answer is “Yes”!

Bach JR . Palliative care becomes “uninformed euthanasia” when patients are not offered noninvasive life preserving options. J Palliat Care 2007; 23: 181–184.

American Academy of Hospice and Palliative Care Medicine. Position statements: definition of palliative care. Revised: 2008. Accessed June 11, 2008. http://www.aahpm.org/positions/definition.html

Davles B , Sehring SA , Partridge JC , Copper BA , Hughes A , Philp JC , . Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 2008; 121: 282–288.

Graham RJ , Robinson WM . Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr 2005; 25: 361–365.

Hardart MKM , Truog RD . Spinal muscular atrophy, type 1. Arch Dis Child 2003; 88: 848–850.

Clingman R. www.DoctorBach.com (home). Revised: 2004. http://www.doctorbach.com Accessed June 11, 2008.

Eagle M , Baudouin SV , Chandler C , Giddings DR , Bullock R , Bushby K. Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 2002; 12: 926–929.

Jeppesen J , Green A , Steffensen BF , Rahbek J. The Duchenne muscular dystrophy population in Denmark, 1977–2001: prevalence, incidence, and survival in relation to the introduction of ventilator use. Neuromuscul Disord 2003; 13: 804–812.

Calvert LK , McKeever TM , Kinnear WJ , Britton JR . Trends in survival from muscular dystrophy in England and Wales and impact on respiratory services. Respir Med 2006; 100: 1058–1063.

Simonds AK , Muntoni F , Heather S , Fielding S. Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax 1998; 53: 949–952.

Raphael J-C , Chevret S , Chastang C , Bouvet F. Randomised trial of preventive nasal ventilation in Duchenne muscular dystrophy. Lancet 1994; 343: 1600–1604.

Birnkrant DJ . New challenges in the management of prolonged survivors of pediatric neuromuscular diseases: a pulmonologist's perspective. Pediatr Pulmonol 2006; 41:1113–1117.

Shumyatcher Y , Shah TA , Noritz GH , Brouhard BH , Spirnak JP , Birnkrant DJ . Symptomatic nephrolithiasis in prolonged survivors of Duchenne muscular dystrophy. Neuromuscul Disord 2008; 18: 561–564.

Bach JR . Medical considerations of long-term survival of Werdnig-Hoffman disease Am J Phys Med Rehabil 2007; 86: 349–355.

Noritz G , Birnkrant DJ . Incidence and outcomes of cardiopulmonary resuscitation In patients with end-stage Duchenne muscular dystrophy [abstract]. Chest 2007; 132: 607S.

Treece PD , Engelberg RA , Shannon SE , Nielsen EL , Braungardt T , Rubenfeld GD , . Integrating palliative and critical care: description of an intervention. Crit Care Med 2006; 34: S380–S387.

Bach JR , Vega J , Majors J , Friedman A. Spinal muscular atrophy type 1 quality of life. Am J Phys Med Rehabil 2003; 82: 137–142.

Bach JR , Tilton MC . Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Arch Phys Med Rehabil 1994; 75: 626–632.

Graham RJ , Dumas HM , O'Brien JE , Burns JP . Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population. Pediatr Crit Care Med 2004; 5: 321–328.

Truog RD , Brock DW , Cook DJ , Danis M , Luce JM , Rubenfeld GD , . Rationing in the intensive care unit. Crit Care Med 2006; 34: 958–963.

O'Brien JE , Haley SM , Dumas HM , Ladenheim B , Mast J , Burke SA , . Outcomes of post-acute hospital episodes for young children requiring airway support. Dev Neurorehabil 2007; 10: 241–247.

Graham RJ , Fleegler EW , Robinson WM . Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts. Pediatrics 2007; 119; e1280–e1287.

Binks JA , Barden WS , Burke TA , Young NL . What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil 2007; 88: 1064–1073.

Nava S , Esquinas A , Ferrer M , Groff P , Scala R , Gonzalez Diaz G , . Multicenter, randomized study of the use of noninvasive ventilation (NIV) vs. oxygen therapy (O₂) in reducing respiratory distress in end-stage cancer patients [abstract]. Am J Resp Crit Care Med 2008; 177: A767.

Simonds AK . Respiratory support for the severely handicapped child with neuromuscular disease: ethics and practicality. Semin Respir Crit Care Med 2007; 28: 342–354.

Curtis JR , Cook DJ , Sinuff T , White DB , Hill N , Keenan SP , . Noninvasive positive pressure ventilation in critical and palliative care settings: understanding the goals of therapy. Crit Care Med 2007; 35: 932–939.