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. 2003 Mar;58(3):272–277. doi: 10.1136/thorax.58.3.272

Ethics and decision making in end stage lung disease

A Simonds 1
PMCID: PMC1746620  PMID: 12612311

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Selected References

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  1. Aboussouan L. S., Khan S. U., Meeker D. P., Stelmach K., Mitsumoto H. Effect of noninvasive positive-pressure ventilation on survival in amyotrophic lateral sclerosis. Ann Intern Med. 1997 Sep 15;127(6):450–453. doi: 10.7326/0003-4819-127-6-199709150-00006. [DOI] [PubMed] [Google Scholar]
  2. Ardagh M. Futility has no utility in resuscitation medicine. J Med Ethics. 2000 Oct;26(5):396–399. doi: 10.1136/jme.26.5.396. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Bach J. R., Barnett V. Ethical considerations in the management of individuals with severe neuromuscular disorders. Am J Phys Med Rehabil. 1994 Apr;73(2):134–140. doi: 10.1097/00002060-199404000-00012. [DOI] [PubMed] [Google Scholar]
  4. Bach J. R., Campagnolo D. I., Hoeman S. Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil. 1991 Jun;70(3):129–135. doi: 10.1097/00002060-199106000-00004. [DOI] [PubMed] [Google Scholar]
  5. Bach J. R., Ishikawa Y., Kim H. Prevention of pulmonary morbidity for patients with Duchenne muscular dystrophy. Chest. 1997 Oct;112(4):1024–1028. doi: 10.1378/chest.112.4.1024. [DOI] [PubMed] [Google Scholar]
  6. Bach J. R., Niranjan V., Weaver B. Spinal muscular atrophy type 1: A noninvasive respiratory management approach. Chest. 2000 Apr;117(4):1100–1105. doi: 10.1378/chest.117.4.1100. [DOI] [PubMed] [Google Scholar]
  7. Bach John Robert. Amyotrophic lateral sclerosis: prolongation of life by noninvasive respiratory AIDS. Chest. 2002 Jul;122(1):92–98. doi: 10.1378/chest.122.1.92. [DOI] [PubMed] [Google Scholar]
  8. Birnkrant D. J., Pope J. F., Martin J. E., Repucci A. H., Eiben R. M. Treatment of type I spinal muscular atrophy with noninvasive ventilation and gastrostomy feeding. Pediatr Neurol. 1998 May;18(5):407–410. doi: 10.1016/s0887-8994(97)00227-0. [DOI] [PubMed] [Google Scholar]
  9. Borasio G. D., Gelinas D. F., Yanagisawa N. Mechanical ventilation in amyotrophic lateral sclerosis: a cross-cultural perspective. J Neurol. 1998 Aug;245 (Suppl 2):S7–S29. doi: 10.1007/s004150050641. [DOI] [PubMed] [Google Scholar]
  10. Breen D., Churches T., Hawker F., Torzillo P. J. Acute respiratory failure secondary to chronic obstructive pulmonary disease treated in the intensive care unit: a long term follow up study. Thorax. 2002 Jan;57(1):29–33. doi: 10.1136/thorax.57.1.29. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Brochard L., Mancebo J., Wysocki M., Lofaso F., Conti G., Rauss A., Simonneau G., Benito S., Gasparetto A., Lemaire F. Noninvasive ventilation for acute exacerbations of chronic obstructive pulmonary disease. N Engl J Med. 1995 Sep 28;333(13):817–822. doi: 10.1056/NEJM199509283331301. [DOI] [PubMed] [Google Scholar]
  12. Curtis J. Randall, Wenrich Marjorie D., Carline Jan D., Shannon Sarah E., Ambrozy Donna M., Ramsey Paul G. Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest. 2002 Jul;122(1):356–362. doi: 10.1378/chest.122.1.356. [DOI] [PubMed] [Google Scholar]
  13. Dales R. E., O'Connor A., Hebert P., Sullivan K., McKim D., Llewellyn-Thomas H. Intubation and mechanical ventilation for COPD: development of an instrument to elicit patient preferences. Chest. 1999 Sep;116(3):792–800. doi: 10.1378/chest.116.3.792. [DOI] [PubMed] [Google Scholar]
  14. Dempsey S. J., Dracup K., Moser D. K. Women's decision to seek care for symptoms of acute myocardial infarction. Heart Lung. 1995 Nov-Dec;24(6):444–456. doi: 10.1016/s0147-9563(95)80022-0. [DOI] [PubMed] [Google Scholar]
  15. Diggory P., Judd M. Advance directives: questionnaire survey of NHS trusts. BMJ. 2000 Jan 1;320(7226):24–25. doi: 10.1136/bmj.320.7226.24. [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Fried Terri R., Bradley Elizabeth H., Towle Virginia R., Allore Heather. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002 Apr 4;346(14):1061–1066. doi: 10.1056/NEJMsa012528. [DOI] [PubMed] [Google Scholar]
  17. Gibson B. Long-term ventilation for patients with Duchenne muscular dystrophy : physicians' beliefs and practices. Chest. 2001 Mar;119(3):940–946. doi: 10.1378/chest.119.3.940. [DOI] [PubMed] [Google Scholar]
  18. Golin C. E., Wenger N. S., Liu H., Dawson N. V., Teno J. M., Desbiens N. A., Lynn J., Oye R. K., Phillips R. S. A prospective study of patient-physician communication about resuscitation. J Am Geriatr Soc. 2000 May;48(5 Suppl):S52–S60. doi: 10.1111/j.1532-5415.2000.tb03141.x. [DOI] [PubMed] [Google Scholar]
  19. Gore J. M., Brophy C. J., Greenstone M. A. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000 Dec;55(12):1000–1006. doi: 10.1136/thorax.55.12.1000. [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. Hill A. T., Hopkinson R. B., Stableforth D. E. Ventilation in a Birmingham intensive care unit 1993-1995: outcome for patients with chronic obstructive pulmonary disease. Respir Med. 1998 Feb;92(2):156–161. doi: 10.1016/s0954-6111(98)90088-9. [DOI] [PubMed] [Google Scholar]
  21. Hinkka H., Kosunen E., Metsänoja R., Lammi U-K, Kellokumpu-Lehtinen P. Factors affecting physicians' decisions to forgo life-sustaining treatments in terminal care. J Med Ethics. 2002 Apr;28(2):109–114. doi: 10.1136/jme.28.2.109. [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. Kleopa K. A., Sherman M., Neal B., Romano G. J., Heiman-Patterson T. Bipap improves survival and rate of pulmonary function decline in patients with ALS. J Neurol Sci. 1999 Mar 15;164(1):82–88. doi: 10.1016/s0022-510x(99)00045-3. [DOI] [PubMed] [Google Scholar]
  23. Lyall R. A., Donaldson N., Fleming T., Wood C., Newsom-Davis I., Polkey M. I., Leigh P. N., Moxham J. A prospective study of quality of life in ALS patients treated with noninvasive ventilation. Neurology. 2001 Jul 10;57(1):153–156. doi: 10.1212/wnl.57.1.153. [DOI] [PubMed] [Google Scholar]
  24. Lynn J., Ely E. W., Zhong Z., McNiff K. L., Dawson N. V., Connors A., Desbiens N. A., Claessens M., McCarthy E. P. Living and dying with chronic obstructive pulmonary disease. J Am Geriatr Soc. 2000 May;48(5 Suppl):S91–100. doi: 10.1111/j.1532-5415.2000.tb03147.x. [DOI] [PubMed] [Google Scholar]
  25. Moretti M., Cilione C., Tampieri A., Fracchia C., Marchioni A., Nava S. Incidence and causes of non-invasive mechanical ventilation failure after initial success. Thorax. 2000 Oct;55(10):819–825. doi: 10.1136/thorax.55.10.819. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. Moss A. H., Oppenheimer E. A., Casey P., Cazzolli P. A., Roos R. P., Stocking C. B., Siegler M. Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation. Advance care planning and outcomes. Chest. 1996 Jul;110(1):249–255. doi: 10.1378/chest.110.1.249. [DOI] [PubMed] [Google Scholar]
  27. Nava S., Ambrosino N., Clini E., Prato M., Orlando G., Vitacca M., Brigada P., Fracchia C., Rubini F. Noninvasive mechanical ventilation in the weaning of patients with respiratory failure due to chronic obstructive pulmonary disease. A randomized, controlled trial. Ann Intern Med. 1998 May 1;128(9):721–728. doi: 10.7326/0003-4819-128-9-199805010-00004. [DOI] [PubMed] [Google Scholar]
  28. Nevins M. L., Epstein S. K. Predictors of outcome for patients with COPD requiring invasive mechanical ventilation. Chest. 2001 Jun;119(6):1840–1849. doi: 10.1378/chest.119.6.1840. [DOI] [PubMed] [Google Scholar]
  29. Percy M. E., Llewellyn-Thomas H. Assessing preferences about the DNR order: does it depend on how you ask? Med Decis Making. 1995 Jul-Sep;15(3):209–216. doi: 10.1177/0272989X9501500303. [DOI] [PubMed] [Google Scholar]
  30. Pinto A. C., Evangelista T., Carvalho M., Alves M. A., Sales Luís M. L. Respiratory assistance with a non-invasive ventilator (Bipap) in MND/ALS patients: survival rates in a controlled trial. J Neurol Sci. 1995 May;129 (Suppl):19–26. doi: 10.1016/0022-510x(95)00052-4. [DOI] [PubMed] [Google Scholar]
  31. Plant P. K., Owen J. L., Elliott M. W. Early use of non-invasive ventilation for acute exacerbations of chronic obstructive pulmonary disease on general respiratory wards: a multicentre randomised controlled trial. Lancet. 2000 Jun 3;355(9219):1931–1935. doi: 10.1016/s0140-6736(00)02323-0. [DOI] [PubMed] [Google Scholar]
  32. Pochard F., Lanore J. J., Bellivier F., Ferrand I., Mira J. P., Belghith M., Brunet F., Dhainaut J. F. Subjective psychological status of severely ill patients discharged from mechanical ventilation. Clin Intensive Care. 1995;6(2):57–61. [PubMed] [Google Scholar]
  33. Polkey M. I., Lyall R. A., Davidson A. C., Leigh P. N., Moxham J. Ethical and clinical issues in the use of home non-invasive mechanical ventilation for the palliation of breathlessness in motor neurone disease. Thorax. 1999 Apr;54(4):367–371. doi: 10.1136/thx.54.4.367. [DOI] [PMC free article] [PubMed] [Google Scholar]
  34. Ravenscroft A. J., Bell M. D. 'End-of-life' decision making within intensive care--objective, consistent, defensible? J Med Ethics. 2000 Dec;26(6):435–440. doi: 10.1136/jme.26.6.435. [DOI] [PMC free article] [PubMed] [Google Scholar]
  35. Rideau Y., Gatin G., Bach J., Gines G. Prolongation of life in Duchenne's muscular dystrophy. Acta Neurol (Napoli) 1983 Apr;5(2):118–124. [PubMed] [Google Scholar]
  36. Sakakihara Y. Ethical attitudes of Japanese physicians regarding life-sustaining treatment for children with severe neurological disabilities. Brain Dev. 2000 Mar;22(2):113–117. doi: 10.1016/s0387-7604(99)00127-8. [DOI] [PubMed] [Google Scholar]
  37. Sakakihara Y., Kubota M., Kim S., Oka A. Long-term ventilator support in patients with Werdnig-Hoffmann disease. Pediatr Int. 2000 Aug;42(4):359–363. doi: 10.1046/j.1442-200x.2000.01241.x. [DOI] [PubMed] [Google Scholar]
  38. Schiff R., Rajkumar C., Bulpitt C. Views of elderly people on living wills: interview study. BMJ. 2000 Jun 17;320(7250):1640–1641. doi: 10.1136/bmj.320.7250.1640. [DOI] [PMC free article] [PubMed] [Google Scholar]
  39. Schneiderman L. J., Gilmer T., Teetzel H. D. Impact of ethics consultations in the intensive care setting: a randomized, controlled trial. Crit Care Med. 2000 Dec;28(12):3920–3924. doi: 10.1097/00003246-200012000-00033. [DOI] [PubMed] [Google Scholar]
  40. Seneff M. G., Wagner D. P., Wagner R. P., Zimmerman J. E., Knaus W. A. Hospital and 1-year survival of patients admitted to intensive care units with acute exacerbation of chronic obstructive pulmonary disease. JAMA. 1995 Dec 20;274(23):1852–1857. [PubMed] [Google Scholar]
  41. Sensky Tom. Withdrawal of life sustaining treatment. BMJ. 2002 Jul 27;325(7357):175–176. doi: 10.1136/bmj.325.7357.175. [DOI] [PMC free article] [PubMed] [Google Scholar]
  42. Simonds A. K., Muntoni F., Heather S., Fielding S. Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax. 1998 Nov;53(11):949–952. doi: 10.1136/thx.53.11.949. [DOI] [PMC free article] [PubMed] [Google Scholar]
  43. Singer P. A., Martin D. K., Kelner M. Quality end-of-life care: patients' perspectives. JAMA. 1999 Jan 13;281(2):163–168. doi: 10.1001/jama.281.2.163. [DOI] [PubMed] [Google Scholar]
  44. Singer P. Ms B and Diane Pretty: a commentary. J Med Ethics. 2002 Aug;28(4):234–235. doi: 10.1136/jme.28.4.234. [DOI] [PMC free article] [PubMed] [Google Scholar]
  45. Steinhauser K. E., Clipp E. C., McNeilly M., Christakis N. A., McIntyre L. M., Tulsky J. A. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000 May 16;132(10):825–832. doi: 10.7326/0003-4819-132-10-200005160-00011. [DOI] [PubMed] [Google Scholar]
  46. Thomas N. H., Dubowitz V. The natural history of type I (severe) spinal muscular atrophy. Neuromuscul Disord. 1994 Sep-Nov;4(5-6):497–502. doi: 10.1016/0960-8966(94)90090-6. [DOI] [PubMed] [Google Scholar]
  47. Uhlmann R. F., Pearlman R. A. Perceived quality of life and preferences for life-sustaining treatment in older adults. Arch Intern Med. 1991 Mar;151(3):495–497. [PubMed] [Google Scholar]
  48. Vianello A., Bevilacqua M., Salvador V., Cardaioli C., Vincenti E. Long-term nasal intermittent positive pressure ventilation in advanced Duchenne's muscular dystrophy. Chest. 1994 Feb;105(2):445–448. doi: 10.1378/chest.105.2.445. [DOI] [PubMed] [Google Scholar]
  49. Vincent J. L. Forgoing life support in western European intensive care units: the results of an ethical questionnaire. Crit Care Med. 1999 Aug;27(8):1626–1633. doi: 10.1097/00003246-199908000-00042. [DOI] [PubMed] [Google Scholar]
  50. Wenger N. S., Phillips R. S., Teno J. M., Oye R. K., Dawson N. V., Liu H., Califf R., Layde P., Hakim R., Lynn J. Physician understanding of patient resuscitation preferences: insights and clinical implications. J Am Geriatr Soc. 2000 May;48(5 Suppl):S44–S51. doi: 10.1111/j.1532-5415.2000.tb03140.x. [DOI] [PubMed] [Google Scholar]

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