Threats to "informed" advance directives for the severely physically challenged?

Archives of Physical Medicine and Rehabilitation

Volumn 84, Issue 4 SUPPL. 2, 2003, Pages

  Bach, John R ^a,b  

^a RUTGERS NEW JERSEY MEDICAL SCHOOL   (United States)

^b University of Medicine and Dentistry of New Jersey   (United States)

Author keywords

Amyotrophic lateral sclerosis; Ethics, medical; Muscular atrophy, spinal; Muscular dystrophy, Duchenne; Neuromuscular diseases; Rehabilitation; Ventilation, mechanical

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; BREATHING MUSCLE; COUNSELING; DUCHENNE MUSCULAR DYSTROPHY; HUMAN; INTUBATION; MEDICAL DECISION MAKING; MORBIDITY; MORTALITY; NEUROMUSCULAR DISEASE; REVIEW; TRACHEOSTOMY; WERDNIG HOFFMANN DISEASE;

EID: 0037390369     PISSN: 00039993     EISSN: None     Source Type: Journal    
DOI: 10.1053/apmr.2003.50243     Document Type: Review

References (38)

1. Advance directive for health care-living will. Cranford (NJ): All-State Legal Supply Co; 1991.
2. Bach JR. Update and perspectives on noninvasive respiratory muscle aids: part 1 - the inspiratory muscle aids. Chest 1994;105:1230-40.
3. Bach JR, Rajaraman R, Ballanger F, et al. Neuromuscular ventilatory insufficiency: the effect of home mechanical ventilator use vs. oxygen therapy on pneumonia and hospitalization rates. Am J Phys Med Rehabil 1998;77:8-19.
4. Bach JR. Update and perspectives on noninvasive respiratory muscle aids: part 2 - the expiratory muscle aids. Chest 1994;105:1538-44.
5. Bach JR, Ishikawa Y, Kim H. Prevention of pulmonary morbidity for patients with Duchenne muscular dystrophy. Chest 1997;112:1024-8.
6. Stewart CA, Gilgoff I, Baydur A, Prentice W, Applebaum D. Gated radionuclide ventriculography in the evaluation of cardiac function in Duchenne's muscular dystrophy. Chest 1988;94:1245-8.
7. Bach JR, Ishikawa Y, Kim H. Prevention of pulmonary morbidity for patients with Duchenne muscular dystrophy. Chest 1997;112:1024-8.
8. Kang SW, Bach JR. Maximum insufflation capacity: the relationships with vital capacity and cough flows for patients with neuromuscular disease. Am J Phys Med Rehabil 2000;79:222-7.
9. Bach JR, Niranjan V. Spinal muscular atrophy type 1: a noninvasive respiratory management approach. Chest 2000;117:1100-5.
10. Bach JR. Amyotrophic lateral sclerosis: communication status and survival with ventilatory support. Am J Phys Med Rehabil 1993; 72:343-9.
11. Bach JR. Amyotrophic lateral sclerosis: predictors for prolongation of life by noninvasive respiratory aids. Arch Phys Med Rehabil 1995;76:828-32.
12. Dubowitz V. Very severe spinal muscular atrophy (SMA type 0): an expanding clinical phenotype. Eur J Paediatr Neurol 1999;3:49-51.
13. Bach JR, Barnett V. Psychosocial, vocational, quality of life and ethical issues In: Bach JR, editor. Pulmonary rehabilitation: the obstructive and paralytic conditions. Philadelphia: Hanley & Belfus; 1996. p 395-411.
14. Bach JR. Ventilator use by muscular dystrophy association patients: an update. Arch Phys Med Rehabil 1992;73:179-83.
15. Pearlman RA, Jonsen A. The use of quality-of-life considerations in medical decision making. J Am Geriatr Soc 1985;33:344-52.
16. Jonsen R, Siegler M, Winslade WJ. Clinical ethics: a practical approach to ethical decisions in clinical medicine. New York: Macmillan; 1982.
17. Dracup K, Raffin T. Withholding and withdrawing mechanical ventilation: assessing quality of life. Am Rev Respir Dis 1989; 140:S44-6.
18. Sivak ED, Gipson WT, Hanson MR. Long-term management of respiratory failure in amyotrophic lateral sclerosis. Ann Neurol 1982;12:18-23.
19. Goldblatt D. Decisions about life support in amyotrophic lateral sclerosis. Semin Neurol 1984;4:104-10.
20. Zola IK. Social and cultural disincentives to independent living. Arch Phys Med Rehabil 1982;63:394-7.
21. Trieschmann RB. Spinal cord injuries: psychological, social and vocational rehabilitation. 2nd ed. New York: Demos, 1988. p 107-14.
22. Gill C. "Right to die" threatens our right to live safe and free. Mainstream Mag 1992:32-6.
23. Bach JR, Intintola P, Alba AS, Holland I. The ventilator-assisted individual: cost analysis of institutionalization versus rehabilitation and in-home management. Chest 1992;101:26-30.
24. Laurie G. Ventilator users, home care, and independent living: an historical perspective. In: Kutscher AH, Gilgoff I, editors. The ventilator: psychosocial and medical aspects. New York: Foundation of Thanatology; 2000. p 147-51.
25. Goldberg AI, Alba AS, Oppenheimer EA, Roberts E. Personal care attendants for people using mechanical ventilation at home [letter]. Chest 1990;98:1543.
26. Make BJ, Gilmartin ME. Rehabilitation and home care for ventilator-assisted individuals. Clin Chest Med 1986;7:679-91.
27. Viroslav J, Sortor S, Rosenblatt R. Alternatives to tracheostomy ventilation in high level SCI [abstract]. J Am Paraplegia Soc 1991;14:87.
28. Attendant Services Network. Personal assistance for independent living. Oakland (CA): World Institute on Disability; 1988.
29. Litvak S, Heumann JE. Attending to America: personal assistance for independent living - the national survey of attendant services programs in the United States. Berkeley (CA): World Institute on Disability; 1987.
30. World Institute on Disability & Rutgers University Bureau of Economic Research. The need for personal assistance. Oakland (CA): World Institute on Disability; Publication No. G008720134.
31. Bach JR. A comparison of long-term ventilatory support alternatives from the perspective of the patient and care giver. Chest 1993;104:1702-6.
32. McDonald ER, Hillel A, Wiedenfeld SA. Evaluation of the psychological status of ventilatory-supported patients with ALS/MND. Palliat Med 1996;10:35-41.
33. Moss AH, Oppenheimer EA, Casey P, et al. Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation: advance care planning and outcomes. Chest 1996;110:249-55.
34. Moss AH, Casey P, Stocking CB, Roos RP, Brooks BR, Siegler M. Home ventilation for amyotrophic lateral sclerosis patients: outcomes, costs, and patient, family and physician attitudes. Neurology 1993;43:438-43.
35. Gelinas DF, O'Connor P, Miller RG. Quality of life for ventilator-dependent ALS patients and their caregivers. J Neurol Sci 1998; 160:S134-6.
36. Goldstein RS, Gort EH. Home mechanical ventilation: demographics and user perspectives. Chest 1995;108:1581-6.
37. Purtilo R. Ethical Issues in the treatment of chronic ventilator-dependent individuals. Arch Phys Med Rehabil 1986;67:718-21.
38. Freed MM. Quality of life: the physician's dilemma. Arch Phys Med Rehabil 1984;65:109-11.