Seminars in Pediatric Neurology
Volume 13, Issue 2 , Pages 132-140 , June 2006

“My Son Is Still Walking”: Stages of Receptivity to Discussions of Advance Care Planning Among Parents of Sons With Duchenne Muscular Dystrophy

Preliminary findings were presented at the American Society of Bioethics & Humanities 2004 Annual Meeting, October 28-31, Philadelphia, PA.

  • Lori Hamby Erby, PhD, ScM

      Affiliations

    • Department of Health, Behavior and Society, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD.
    • Corresponding Author InformationAddress reprint requests to Lori H. Erby, PhD, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Room 750, Baltimore, MD 21205.
    • ,
  • Cynda Rushton, DNSc, RN

      Affiliations

    • Phoebe Berman Bioethics Institute, Johns Hopkins University, Baltimore, MD.
    • School of Nursing, Johns Hopkins University, Baltimore, MD.
    • Department of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, MD.
    • ,
  • Gail Geller, ScD, MHS

      Affiliations

    • Department of Health, Behavior and Society, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD.
    • Phoebe Berman Bioethics Institute, Johns Hopkins University, Baltimore, MD.
    • Department of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, MD.
    • Department of Medicine, School of Medicine, Johns Hopkins University, Baltimore, MD.

References 

  1. Stepanek MJT. Journey Through Heartsongs. Boston, MA: Hyperion Press; 2002;
  2. Roland EH. Muscular dystrophy. Pediatr Rev. 2000;21:233–238
  3. Gibson B. Long-term ventilation for patients with Duchenne muscular dystrophy: Physicians’ beliefs and practices. Chest. 2001;119:940–946
  4. Eagle M, Baudouin SV, Chandler C, et al. Survival in Duchenne muscular dystrophy: Improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord. 2002;12:926–929
  5. Parker AE, Robb SA, Chambers J, et al. Analysis of an adult Duchenne muscular dystrophy population. Q J Med. 2005;98:729–736
  6. Gomez-Merino E, Bach JR. Duchenne muscular dystrophy: Prolongation of life by noninvasive ventilation and mechanically assisted coughing. Am J Phys Med Rehabil. 2002;81:411–415
  7. Kolarik RC, Arnold RM, Fischer GS, et al. Objectives for advance care planning. J Palliat Med. 2002;5:697–704
  8. Weir RF, Peters C. Affirming the decisions adolescents make about life and death. Hastings Cent Rep. 1997;27:29–40
  9. Rushton CH. Ethics and the child with a chronic condition. In:  Jackson PL,  Vessey JA editor. Primary Care of the Child With a Chronic Condition. St. Louis, MO: Mosby; 1996;p. 88–101
  10. Walsh-Kelly CM, Lang KR, Chevako J, et al. Advance directives in a pediatric emergency department. Pediatrics. 1999;103:826–830
  11. Jefferson LS, White BC, Louis PT, et al. Use of the natural death act in pediatric patients. Crit Care Med. 1991;19:901–905
  12. Wharton RH, Levine KR, Buka S, et al. Advance care planning for children with special health care needs: A survey of parental attitudes. Pediatrics. 1996;97:682–687
  13. Himelstein BP, Hilden JM, Boldt AM, et al. Pediatric palliative care. N Engl J Med. 2004;350:1752–1762
  14. Royal College of Paediatrics and Child Health: A Guide to the Development of Children’s Palliative Care Services. London, Association for Children with Life-Threatening or Terminal Conditions and their Families, 1997
  15. Mccabe MA, Rushton CH, Glover J, et al. Implications of the Patient Self-Determination Act: Guidelines for involving adolescents in medical decision making. J Adolesc Health. 1996;19:319–324
  16. Madorsky JG, Radford LM, Neumann EM. Psychosocial aspects of death and dying in Duchenne muscular dystrophy. Arch Phys Med Rehabil. 1984;65:79–82
  17. 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
  18. Miller JR, Colbert AP, Osberg JS. Ventilator dependency: Decision-making, daily functioning and quality of life for patients with Duchenne muscular dystrophy. Dev Med Child Neurol. 1990;32:1078–1086
  19. Bach JR, Campagnolo DI, Hoeman S. Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil. 1991;70:129–135
  20. Gilgoff I, Prentice W, Baydur A. Patient and family participation in the management of respiratory failure in Duchenne’s muscular dystrophy. Chest. 1989;95:519–524
  21. Knebel AR, Hudgings C. End-of-life issues in genetic disorders: Summary of workshop held at the National Institutes of Health on September 26, 2001. Genet Med. 2002;4:373–378
  22. Knebel AR, Hudgings C. End-of-life issues in genetic disorders: Literature and research directions. Genet Med. 2002;4:366–372
  23. Hilton T, Orr RD, Perkin RM, et al. End of life care in Duchenne muscular dystrophy. Pediatr Neurol. 1993;9:165–177
  24. Bernard HR. In: Unstructured and semistructured interviewing, in Research methods in anthropology: Qualitative and quantitative approaches. ed 2. Walnut Creek, CA: Altamira Press; 1995;p. 208–236
  25. Miles MB, Huberman AM. Qualitative Data Analysis: An Expanded Sourcebook. Thousand Oaks, CA: Sage Publications; 1994;
  26. Carrese JA, Mullaney JL, Faden RR, et al. Planning for death but not serious future illness: Qualitative study of housebound elderly patients. BMJ. 2002;325:125–127
  27. Barnard D. Advance care planning is not about “getting it right.”. J Palliat Med. 2002;5:475–481
  28. Field MJ, Behrman R. IOM Committee: When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. Washington, DC: The National Academies Press; 2003;
  29. American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106:351–357
  30. Precepts of palliative care for children, adolescents and their families. 2006;Available at: http://www.naan.org/files/public/Last_Acts_Precepts.pdf Accessed on August 22
  31. Mahon MM, Deatrick JA, McKnight HJ, et al. Discontinuing treatment in children with chronic, critical illnesses. Nurse Pract Forum. 2000;11:6–14
  32. Rushton C. Integrating ethics and palliative care in pediatrics. Am J Nurs. 2004;104:54–63
  33. Hurwitz CA, Duncan J, Wolfe J. Caring for the child with cancer at the close of life: “There are people who make it, and I’m hoping I’m one of them.”. JAMA. 2004;292:2141–2149
  34. Klaus G, Mehls O, Hinderer J. Mode of death in DMD. Lancet. 1991;337:801–802
  35. Stroebe M, Schut H. The dual process model of coping with bereavement: Rationale and description. Death Stud. 1999;23:197–224
  36. Himelstein BP. Palliative care in pediatrics. Anesthesiol Clin North America. 2005;23:837–856
  37. Wolfe J, Friebert S, Hilden J. Caring for children with advanced cancer integrating palliative care. Pediatr Clin North Am. 2002;49:1043–1062

 Supported by a grant from the Stavros Niarchos Foundation.

PII: S1071-9091(06)00099-4

doi: 10.1016/j.spen.2006.06.009

Seminars in Pediatric Neurology
Volume 13, Issue 2 , Pages 132-140 , June 2006

Article Tools

* Image Usage & Resolution