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Original Article

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

, , , , , , & show all
Pages 91-98 | Received 24 Nov 2007, Accepted 25 Nov 2007, Published online: 10 Jul 2009

References

  • Tandan R., Bradley W. G. Amyotrophic lateral sclerosis: Part 1. Clinical features, pathology, and ethical issues in management. Ann Neurol 1985; 18: 271–80
  • Tandan R., Bradley W. G. Amyotrophic lateral sclerosis: Part 2. Clinical features, pathology, and ethical issues in management:. Ann Neurol 1985; 18: 419–31
  • Li T. M., Alberman E., Swash M. Clinical associations of 560 cases of motor neuron disease. J Neurol Neurosurg Psychiatry 1990; 51: 778–84
  • Mulder D. W., Howard R. M. Patient resistance and prognosis in amyotrophic lateral sclerosis. Mayo Clin Proc 1976; 51: 537–41
  • Caroscio J. T., Mulvihill M. N., Sterlin R., Abrams B. Amyotrophic lateral sclerosis: its natural history. Neurol Clin 1987; 5: 1–8
  • Borasio G. D., Voltz R. Palliative care in amyotrophic lateral sclerosis. J Neurol 1997; 244: 11–7
  • Bach J. R. Amyotrophic lateral sclerosis: prolongation of life by non‐invasive respiratory aids. Chest 2002; 122: 92–8
  • Butz M., Wollinsky K. H., Wiedemuth‐Catrinescu U., Sperfeld A., Winter S., Mehrkens H. H., et al. Longitudinal effects of non‐invasive positive‐pressure ventilation in patients with amyotrophic lateral sclerosis. Am J Phys Med Rehabil 2003; 82: 597–604
  • Bourke S. C., Bullock R. E., Williams T. L., Shaw P. J., Gibson G. J. Non‐invasive ventilation in ALS: indications and effect on quality of life. Neurology 2003; 61: 171–7
  • Bourke S. C., Tomlinson M., Williams T. L., Bullock R. E., Shaw P. J., Gibson G. J. Effects of non‐invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomized controlled trial. Lancet Neurology 2006; 5: 140–7
  • O'Brien T., Kelly M., Saunders C. Motor neuron disease: a hospice perspective. Br Med J 1992; 304: 471–3
  • Oliver D. The quality of care and symptom control: the effects on the terminal phase of MND/ALS. J Neurol Sci 1996; 139: 134–6
  • Neudert C., Oliver D., Wasner M., Borasio G. D. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol 2001; 248: 612–6
  • Veldink J. H., Wokke J. H., van der Wal G., Vianney de Jong J. M., van den Berg L. H. Euthanasia and physician‐assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med 2002; 346: 1638–44
  • Bascom P. B., Tolle S. W. Responding to requests for physician‐assisted suicide. “These are uncharted waters for both of us. …”. JAMA 2002; 288: 91–8
  • Block S. D. 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 2000; 132: 209–18
  • Lechtzin N., Wiener C. M., Clawson L., Davidson M. C., Anderson F., Gowda N., et al. Use of non‐invasive ventilation in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2004; 5: 9–15
  • Cazzolli P. A., Oppenheimer E. A. Home mechanical ventilation for amyotrophic lateral sclerosis: nasal compared tracheostomy‐intermittent positive pressure ventilation. J Neurol Sci 1996; 139: 123–8
  • Jackson C. E., Rosenfeld J., Moore D. H., Bryan W. W., Barohn R. J., Wrench M., et al. A preliminary evaluation of a prospective study of pulmonary function studies and symptoms of hypoventilation in ALS/MND patients. J Neurol Sci 2001; 191: 75–8
  • Kaub‐Wittemer D., Steinbuchel N., Wasner M., Laier‐Groeneveld G., Borasio G. D. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage 2003; 26: 890–6
  • Kübler A., Winter S., Ludolph A. C., Hautzinger M., Birbaumer N. Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabil Neural Repair 2005; 19: 182–93
  • Trail M., Nelson N. D., Van J. N., Appel S. H., Lai E. C. 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 2003; 209: 79–85
  • Moss A. H., Casey P., Stocking C. B., Roos R. P., Brooks B. R., Siegler M. Home ventilation for amyotrophic lateral sclerosis patients: outcomes, costs, and patient, family and physician attitudes. Neurology 1993; 43: 438–43
  • Quill TE. 2000. Initiating end‐of‐life discussions with seriously ill patients: addressing the ‘elephant’ in the room. JAMA. 284. 2502-7
  • Block S. D. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA 2001; 285: 2898–905
  • Ganzini L., Johnston W. S., Silveira M. J. The final month in patients with ALS. Neurology 2002; 59: 428–31
  • Hecht M., Hillemacher T., Gräsel E., Tigges S., Winterholler M., Heuss D., et al. Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord 2002; 3: 225–31
  • Ganzini L., Johnston W. S., McFarland B. H., Tolle S. W., Lee M. A. Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide. N Engl J Med 1998; 339: 967–73
  • Albert S. M., Rabkin J. G., Del Bene M. L., Tider T., O'Sullivan I., Rowland L. P., et al. Wish to die in end‐stage ALS. Neurology 2005; 65: 68–74
  • Emanuel E. J., Fairclough D. L., Emanuel L. L. Attitudes and desires related to euthanasia and physician‐assisted suicide among terminally ill patients and their caregivers. JAMA 2000; 284: 2460–8
  • Hedberg K., Hopkins D., Southwick K. Legalized physician‐assisted suicide in Oregon, 2001. N Engl J Med 2002; 346: 450–2
  • Meier D. E., Emmons C. A., Wallenstein S., Quill T., Morrison R. S., Cassel C. K. A national survey of physician‐assisted suicide and euthanasia in the United States. N Engl J Med 1998; 338: 193–201
  • Back A. L., Wallace J. I., Starks H. E., Pearlman R. A. Physician‐assisted suicide and euthanasia in Washington state: patient requests and physician responses. JAMA 1996; 275: 919–25
  • Ganzini L., Nelson H. D., Schmidt T. A., Kraemer D. F., DeLorit M. A., Lee M. A. Physicians' experiences with the ‘Oregon Death with Dignity Act’. N Engl J Med 2000; 342: 557–63
  • Sullivan A. D., Hedberg K., Fleming D. W. Legalized physician‐assisted suicide in Oregon: the second year. N Engl J Med 2000; 342: 598–604
  • Ganzini L., Silveira M. J., Johnston W. S. 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 2002; 24: 312–7
  • Rabkin J. G., Wagner G. J., Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med 2000; 62: 271–9
  • Rabkin J. G., Albert S. M., Del Bene M. L., O'Sullivan I., Tider T., Rowland L. P., et al. Prevalence of depressive disorders and change over time in late‐stage ALS. Neurology 2005; 65: 9–10
  • Bungener C., Piquard A., Pradat P. F., Salachas F., Meininger V., Lacomblez L. Psychopathology in amyotrophic lateral sclerosis: a preliminary study with 27 ALS patients. Amyotroph Lat Scler Other Motor Neuron Disord 2005; 6: 221–5
  • Walsh S. M., Bremer B. A., Felgoise S. H., Simmons Z. Religiousness is related to quality of life in patients with ALS. Neurology 2003; 60: 1527–9
  • Murphy P. L., Albert S. M., Weber C. M., Del Bene M. L., Rowland L. P. Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology 2000; 55: 1581–4
  • Gay P. C., Edmonds L. C. Severe hypercapnia after low‐flow oxygen therapy in patients with neuromuscular disease and diaphragmatic dysfunction. Mayo Clin Proc 1995; 70: 327–30

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