Attitudes towards hastened death in ALS: A prospective study of patients and family caregivers

References

• Mitchell JD, Borasio GD. Amyotrophic lateral sclerosis. Lancet. 2007;369:2031–41.
   PubMed Web of Science ®Google Scholar
• Rabkin JG, Wagner GJ, del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62:271–9.
   PubMed Web of Science ®Google Scholar
• McLeod JE, Clarke DM. A review of psychosocial aspects of motor neuron disease. J Neurol Sci. 2007;258:4–10.
   PubMed Web of Science ®Google Scholar
• Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001;248:612–6.
   PubMed Web of Science ®Google Scholar
• Kuhnlein P, Kubler A, Raubold S, Worrell M, Kurt A, Gdynia HJ, et al. Palliative care and circumstances of dying in German ALS patients using non-invasive ventilation. Amyotroph Lateral Scler. 2008;9:91–8.
   PubMed Web of Science ®Google Scholar
• Albert SM, Murphy PL, edl Bene ML, Rowland LP. Prospective study of palliative care in ALS: choice, timing, outcomes. J Neurol Sci. 1999;169:108–13.
   PubMed Web of Science ®Google Scholar
• Mandler RN, Anderson FA Jr, Miller RG, Clawson L, Cudkowicz M, del Bene M. The ALS Patient Care Database: insights into end-of-life care in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:203–8.
   PubMed Web of Science ®Google Scholar
• Maessen M, Veldink JH, Onwuteaka-Philipsen BD, de Vries JM, Wokke JH, van der Wal G, et al. Trends and determinants of end-of-life practices in ALS in the Netherlands. Neurology. 2009;73:954–61.
   PubMed Web of Science ®Google Scholar
• Veldink JH, Wokke JH, van der Wal G, Vianney de Jong JM, van den Berg LH. Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med. 2002;346:1638–44.
   PubMed Web of Science ®Google Scholar
• Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide. N Engl J Med. 1998;339:967–73.
   PubMed Web of Science ®Google Scholar
• Hedberg K, Hopkins D, Leman R, Kohn M. The 10-year experience of Oregon’s Death with Dignity Act: 1998–2007. J Clin Ethics.2009;20:124–32.
   Google Scholar
• Bosshard G, Broeckaert B, Clark D, Materstvedt LJ, Gordijn B, Muller-Busch HC. A role for doctors in assisted dying? An analysis of legal regulations and medical professional positions in six European countries. J Med Ethics. 2008;34:28–32.
   PubMed Web of Science ®Google Scholar
• Stutzki R, Schneider U, Reiter-Theil S, Weber M. Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers. Front Psychol. 2012;3:443.
   PubMed Web of Science ®Google Scholar
• Albert SM, Rabkin JG, del Bene ML, Tider T, O’Sullivan I, Rowland LP, et al. Wish to die in end-stage ALS. Neurology. 2005;65:68–74.
   PubMed Web of Science ®Google Scholar
• Dreyer PS, Felding M, Klitnaes CS, Lorenzen CK. Withdrawal of invasive home mechanical ventilation in patients with advanced amyotrophic lateral sclerosis: 10 years of Danish experience. J Palliat Med. 2012;15: 205–9.
   PubMed Web of Science ®Google Scholar
• Maessen M, Veldink JH, van den Berg LH, Schouten HJ, van der Wal G, Onwuteaka-Philipsen BD. Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients. J Neurol. 2010;257:1192–8.
   PubMed Web of Science ®Google Scholar
• Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999; 52:1434–40.
   PubMed Web of Science ®Google Scholar
• Ganzini L, Silveira MJ, Johnston WS. 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.
   PubMed Web of Science ®Google Scholar
• Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioural impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73: 1227–33.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Borasio GD, Dengler R, Hardiman O, Kollewe K, Leigh PN, et al. Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC Working Group. Amyotroph Lateral Scler. 2007;8: 195–213.
   PubMed Web of Science ®Google Scholar
• Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
   PubMed Web of Science ®Google Scholar
• Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology. 2001;56:442–4.
   PubMed Web of Science ®Google Scholar
• Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res. 2002;52:69–77.
   PubMed Web of Science ®Google Scholar
• The R Development Core Team. A language and environment for statistical computing. R Foundation for Statistical Computing 2011.
   Google Scholar
• Achille MA, Ogloff JR. Attitudes toward and desire for assisted suicide among persons with amyotrophic lateral sclerosis. Omega (Westport). 2003;48:1–21.
   PubMed Web of Science ®Google Scholar
• Tröhler U, Reiter-Theil S. Ethics Codes in Medicine. Foundations and Achievements since 1947. Aldershot: Ashgate, 1998.
   Google Scholar
• Institut für Demoskopie Allensbach. Ärztlich begleiteter Suizid und aktive Sterbehilfe aus Sicht der deutschen Ärzteschaft. Allensbach. Accessible at http://www.bundesaerztekammer.de/downloads/Sterbehilfe.pdf Accessed April 17, 2013.
   Google Scholar
• Fischer S, Huber CA, Imhof L, Mahrer Imhof R, Furter M, Ziegler SJ, et al. Suicide assisted by two Swiss right-to-die organizations. J Med Ethics. 2008;34:810–4.
   PubMed Web of Science ®Google Scholar
• Kusch R, Spittler JF. Weißbuch 2012. Volume 4. Norderstedt: Verein SterbeHilfe eV, 2012.
   Google Scholar
• Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000;284:2460–8.
   PubMed Web of Science ®Google Scholar
• Silveira MJ, Kim SYH, Langa KM. Advance Directives and Outcomes of Surrogate Decision Making before Death. New Engl J Med. 2010;362:1211–8.
   PubMed Web of Science ®Google Scholar
• Wittink MN, Morales KH, Meoni LA, Ford DE, Wang NY, Klag MJ, et al. Stability of preferences for end-of-life treatment after three years of follow-up: the Johns Hopkins Precursors Study. Arch Intern Med. 2008;168:2125–30.
   PubMedGoogle Scholar
• Jox RJ, Krebs M, Bickhardt J, Hessdorfer K, Roller S, Borasio GD. How strictly should advance decisions be followed?The patients’ opinion. Palliat Med. 2008;22: 675–6.
   PubMed Web of Science ®Google Scholar
• Andorno R, Biller-Andorno N, Brauer S. Advance health care directives: towards a coordinated European policy?Eur J Health Law. 2009;16:207–27.
   PubMedGoogle Scholar
• Boerner K, Mock SE. Impact of patient suffering on caregiver well-being: the case of amyotrophic lateral sclerosis patients and their caregivers. Psychol Health Med. 2012;17:457–66.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, van Damme P, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS): revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
   PubMed Web of Science ®Google Scholar
• Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neuron disease: moving from caregiver burden studies to palliative care interventions. Palliat Med. 2013;27: 437–46.
   PubMed Web of Science ®Google Scholar
• Lindsay RA. Oregon’s experience: evaluating the record. Am J Bioeth. 2009;9:19–27.
   PubMed Web of Science ®Google Scholar
• Miccinesi G, Fischer S, Paci E, Onwuteaka-Philipsen BD, Cartwright C, van der Heide A, et al. Physicians’ attitudes towards end-of-life decisions: a comparison between seven countries. Soc Sci Med. 2005;60:1961–74.
   PubMed Web of Science ®Google Scholar