Palliative care and circumstances of dying in German ALS patients using non-invasive ventilation

Amyotrophic Lateral Sclerosis

Volumn 9, Issue 2, 2008, Pages 91-98

  Kühnlein, Peter ^a   Kübler, Andrea ^b,c   Raubold, Sabine ^a   Worrell, Marcia ^c   Kurt, Anja ^a   Gdynia, Hans Jürgen ^a   Sperfeld, Anne Dorte ^a   Ludolph, Albert Christian ^a  

^a UNIVERSITY OF ULM   (Germany)

^b UNIVERSITY OF TÜBINGEN   (Germany)

^c UNIVERSITY OF ROEHAMPTON   (United Kingdom)

Author keywords

Amyotrophic lateral sclerosis; Euthanasia; Non invasive ventilation; Palliative care; Physician assisted suicide

Indexed keywords

ANXIOLYTIC AGENT; CARBON DIOXIDE; OPIATE DERIVATIVE; SEDATIVE AGENT;

ADULT; AGED; AIRWAY OBSTRUCTION; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; ARTIFICIAL VENTILATION; CAREGIVER; CLINICAL ARTICLE; CONTROLLED STUDY; DEATH; DYING; EUTHANASIA; FAMILY; FEMALE; FRIEND; GENERAL PRACTITIONER; GERMANY; HUMAN; LEGAL ASPECT; MALE; NETHERLANDS; NON INVASIVE PROCEDURE; PALLIATIVE THERAPY; PATIENT ATTITUDE; PATIENT SELECTION; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; QUANTITATIVE ANALYSIS; RELIGION; SOCIAL SUPPORT; STRUCTURED INTERVIEW; SUICIDE;

ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; ATTITUDE TO DEATH; CAREGIVERS; EUTHANASIA; FEMALE; GERMANY; HUMANS; MALE; MIDDLE AGED; PALLIATIVE CARE; POSITIVE-PRESSURE RESPIRATION; SUICIDE, ASSISTED;

EID: 42549142242     PISSN: 17482968     EISSN: 1471180X     Source Type: Journal    
DOI: 10.1080/17482960701830495     Document Type: Article

References (41)

1. Tandan, R. and Bradley, W. G. (1985) Amyotrophic lateral sclerosis: Part 1. Clinical features, pathology, and ethical issues in management. Ann Neurol, 18, pp. 271-280.
2. Tandan, R. and Bradley, W. G. (1985) Amyotrophic lateral sclerosis: Part 2. Clinical features, pathology, and ethical issues in management:. Ann Neurol, 18, pp. 419-431.
3. Li, T. M., Alberman, E. and Swash, M. (1990) Clinical associations of 560 cases of motor neuron disease. J Neurol Neurosurg Psychiatry, 51, pp. 778-784.
4. Mulder, D. W. and Howard, R. M. (1976) Patient resistance and prognosis in amyotrophic lateral sclerosis. Mayo Clin Proc, 51, pp. 537-541.
5. Caroscio, J. T., Mulvihill, M. N., Sterlin, R. and Abrams, B. (1987) Amyotrophic lateral sclerosis: Its natural history. Neurol Clin, 5, pp. 1-8.
6. Borasio, G. D. and Voltz, R. (1997) Palliative care in amyotrophic lateral sclerosis. J Neurol, 244, pp. 11-17.
7. Bach, J. R. (2002) Amyotrophic lateral sclerosis: Prolongation of life by non-invasive respiratory aids. Chest, 122, pp. 92-98.
8. Butz, M., Wollinsky, K. H., Wiedemuth-Catrinescu, U., Sperfeld, A., Winter, S. and Mehrkens, H. H. (2003) Longitudinal effects of non-invasive positive-pressure ventilation in patients with amyotrophic lateral sclerosis. Am J Phys Med Rehabil, 82, pp. 597-604.
9. Bourke, S. C., Bullock, R. E., Williams, T. L., Shaw, P. J. and Gibson, G. J. (2003) Non-invasive ventilation in ALS: Indications and effect on quality of life. Neurology, 61, pp. 171-177.
10. Bourke, S. C., Tomlinson, M., Williams, T. L., Bullock, R. E., Shaw, P. J. and Gibson, G. J. (2006) Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: A randomized controlled trial. Lancet Neurology, 5, pp. 140-147.
11. O'Brien, T., Kelly, M. and Saunders, C. (1992) Motor neuron disease: A hospice perspective. Br Med J, 304, pp. 471-473.
12. Oliver, D. (1996) The quality of care and symptom control: The effects on the terminal phase of MND/ALS. J Neurol Sci, 139, pp. 134-136.
13. Neudert, C., Oliver, D., Wasner, M. and Borasio, G. D. (2001) The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol, 248, pp. 612-616.
14. Veldink, J. H., Wokke, J. H., van der Wal, G., de Jong, J. M. Vianney and Berg, L. H. van den (2002) Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med, 346, pp. 1638-1644.
15. Bascom, P. B. and Tolle, S. W. (2002) Responding to requests for physician-assisted suicide. "These are uncharted waters for both of us...". JAMA, 288, pp. 91-98.
16. Block, S. D. (2000) Assessing and managing depression in the terminally ill patient. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med, 132, pp. 209-218.
17. Lechtzin, N., Wiener, C. M., Clawson, L., Davidson, M. C., Anderson, F. and Gowda, N. (2004) Use of non-invasive ventilation in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord, 5, pp. 9-15.
18. Cazzolli, P. A. and Oppenheimer, E. A. (1996) Home mechanical ventilation for amyotrophic lateral sclerosis: Nasal compared tracheostomy-intermittent positive pressure ventilation. J Neurol Sci, 139, pp. 123-128.
19. Jackson, C. E., Rosenfeld, J., Moore, D. H., Bryan, W. W., Barohn, R. J. and Wrench, M. (2001) A preliminary evaluation of a prospective study of pulmonary function studies and symptoms of hypoventilation in ALS/MND patients. J Neurol Sci, 191, pp. 75-78.
20. Kaub-Wittemer, D., Steinbuchel, N., Wasner, M., Laier-Groeneveld, G. and Borasio, G. D. (2003) Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage, 26, pp. 890-896.
21. Kübler, A., Winter, S., Ludolph, A. C., Hautzinger, M. and Birbaumer, N. (2005) Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabil Neural Repair, 19, pp. 182-193.
22. Trail, M., Nelson, N. D., Van, J. N., Appel, S. H. and Lai, E. C. (2003) A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J Neurol Sci, 209, pp. 79-85.
23. Moss, A. H., Casey, P., Stocking, C. B., Roos, R. P., Brooks, B. R. and Siegler, M. (1993) Home ventilation for amyotrophic lateral sclerosis patients: Outcomes, costs, and patient, family and physician attitudes. Neurology, 43, pp. 438-443.
24. Block, S. D. (2001) Psychological considerations, growth, and transcendence at the end of life: The art of the possible. JAMA, 285, pp. 2898-2905.
25. Ganzini, L., Johnston, W. S. and Silveira, M. J. (2002) The final month in patients with ALS. Neurology, 59, pp. 428-431.
26. Hecht, M., Hillemacher, T., Gräsel, E., Tigges, S., Winterholler, M. and Heuss, D. (2002) Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord, 3, pp. 225-231.
27. Ganzini, L., Johnston, W. S., McFarland, B. H., Tolle, S. W. and Lee, M. A. (1998) Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide. N Engl J Med, 339, pp. 967-973.
28. Albert, S. M., Rabkin, J. G., Bene, M. L. Del, Tider, T., O'Sullivan, I. and Rowland, L. P. (2005) Wish to die in end-stage ALS. Neurology, 65, pp. 68-74.
29. Emanuel, E. J., Fairclough, D. L. and Emanuel, L. L. (2000) Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA, 284, pp. 2460-2468.
30. Hedberg, K., Hopkins, D. and Southwick, K. (2002) Legalized physician-assisted suicide in Oregon, 2001. N Engl J Med, 346, pp. 450-452.
31. Meier, D. E., Emmons, C. A., Wallenstein, S., Quill, T., Morrison, R. S. and Cassel, C. K. (1998) A national survey of physician-assisted suicide and euthanasia in the United States. N Engl J Med, 338, pp. 193-201.
32. Back, A. L., Wallace, J. I., Starks, H. E. and Pearlman, R. A. (1996) Physician-assisted suicide and euthanasia in Washington state: Patient requests and physician responses. JAMA, 275, pp. 919-925.
33. Ganzini, L., Nelson, H. D., Schmidt, T. A., Kraemer, D. F., DeLorit, M. A. and Lee, M. A. (2000) Physicians' experiences with the 'Oregon Death with Dignity Act'. N Engl J Med, 342, pp. 557-563.
34. Sullivan, A. D., Hedberg, K. and Fleming, D. W. (2000) Legalized physician-assisted suicide in Oregon: The second year. N Engl J Med, 342, pp. 598-604.
35. Ganzini, L., Silveira, M. J. and Johnston, W. S. (2002) Predictors and correlates of interest in assisted suicide in the final month of life among ALS patients in Oregon and Washington. J Pain Symptom Manage, 24, pp. 312-317.
36. Rabkin, J. G., Wagner, G. J. and Bene, M. Del (2000) Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med, 62, pp. 271-279.
37. Rabkin, J. G., Albert, S. M., Bene, M. L. Del, O'Sullivan, I., Tider, T. and Rowland, L. P. (2005) Prevalence of depressive disorders and change over time in late-stage ALS. Neurology, 65, pp. 9-10.
38. Bungener, C., Piquard, A., Pradat, P. F., Salachas, F., Meininger, V. and Lacomblez, L. (2005) Psychopathology in amyotrophic lateral sclerosis: A preliminary study with 27 ALS patients. Amyotroph Lat Scler Other Motor Neuron Disord, 6, pp. 221-225.
39. Walsh, S. M., Bremer, B. A., Felgoise, S. H. and Simmons, Z. (2003) Religiousness is related to quality of life in patients with ALS. Neurology, 60, pp. 1527-1529.
40. Murphy, P. L., Albert, S. M., Weber, C. M., Bene, M. L. Del and Rowland, L. P. (2000) Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology, 55, pp. 1581-1584.
41. Gay, P. C. and Edmonds, L. C. (1995) Severe hypercapnia after low-flow oxygen therapy in patients with neuromuscular disease and diaphragmatic dysfunction. Mayo Clin Proc, 70, pp. 327-330.