Attitudes toward assisted suicide and life-prolonging measures in Swiss ALS patients and their caregivers

Frontiers in Psychology

Volumn 3, Issue OCT, 2012, Pages

  Stutzki, Ralf ^a   Schneider, Ursula ^b   Reiter Theil, Stella ^a   Weber, Markus ^b  

^a UNIVERSITY HOSPITAL BASEL   (Switzerland)

^b Muskelzentrum/ALS Clinic   (Switzerland)

Author keywords

ALS; Depression; End of life; Motor neuron disease; Quality of life

Indexed keywords

EID: 84870882302     PISSN: None     EISSN: 16641078     Source Type: Journal    
DOI: 10.3389/fpsyg.2012.00443     Document Type: Article

References (32)

1. Albert, S. M., Murphy, P. L., Del Bene, M. L., and Rowland, L. P. (1999). A prospective study of preferences and actual treatment choices in ALS. Neurology 53, 278-283.
2. Albert, S. M., Rabkin, J. G., Del Bene, M. L., Tider, T., O'sullivan, I., Rowland,L. P.,et al. (2005).Wish to die in end-stage ALS. Neurology 65, 68-74
3. Andersen, P. M., Abrahams, S., Borasio, G. D., De Carvalho, M., Chio, A., Van Damme, P., et al. (2012). EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) revised report of an EFNS task force. Eur. J. Neurol. 19, 360-375.
4. 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, 91-98.
5. Benditt, J. O., Smith, T. S., and Tonelli, M. R. (2001). Empowering the individual with ALS at the end-of-life: disease-specific advance care planning. Muscle Nerve 24, 1706-1709.
6. Bjelland, I., Dahl, A. A., Haug, T. T., and Neckelmann, D. (2002). The validity of the hospital anxiety and depression scale. An updated literature review. J. Psychosom. Res. 52, 69-77.
7. Brooks, B. R., Miller, R. G., Swash, M., and Munsat, T. L. (2000). El escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph. Lateral Scler. Other Motor Neuron Disord. 1, 293-299.
8. Chio, A., Gauthier, A., Calvo, A., Ghiglione, P., and Mutani, R. (2005). Caregiver burden and patients' perception of being a burden in ALS. Neurology 64, 1780-1782.
9. Fang, F.,Valdimarsdottir, U., Furst, C. J., Hultman,C.,Fall,K.,Sparen,P.,et al. (2008). Suicide among patients with amyotrophic lateral sclerosis. Brain 131, 2729-2733.
10. Fischer, S., Huber, C. A., Imhof, L., Mahrer Imhof, R., Furter, M., Ziegler, S. J., et al. (2008). Suicide assisted by two Swiss right-todie organisations. J. Med. Ethics 34, 810-814.
11. 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 care givers toward assisted suicide. N. Engl. J. Med. 339, 967-973.
12. 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, 312-317.
13. Hecht, M. J., Graesel, E., Tigges, S., Hillemacher, T., Winterholler, M., Hilz, M. J., et al. (2003). Burden of care in amyotrophic lateral sclerosis. Palliat. Med. 17, 327-333.
14. Jox, R., Haarmann-Doetkotte, S., Wasner, M., and Borasio, G. D. (2007). The wish to hasten death amongALS patients in a palliative care program. Amyotroph. Lateral. Scler. 8(Suppl. 1), 87-88.
15. Lo Coco, G., Lo Coco, D., Cicero, V., Oliveri, A., Lo Verso, G., Piccoli, F., et al. (2005). Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. J. Neurol. Sci. 238, 11-17.
16. Lofmark, R., Nilstun, T., Cartwright, C., Fischer, S., Van Der Heide, A., Mortier, F., et al. (2008). Physicians' experiences with end-oflife decision-making: survey in 6 European countries and Australia. BMC Med. 6, 4. doi:10.1186/17417015-6-4
17. Maessen,M.,Veldink,J. H.,OnwuteakaPhilipsen, B. D., De Vries, J. M., Wokke, J. H., Van Der Wal, G., et al. (2009). Trends and determinants of end-of-life practices in ALS in the Netherlands. Neurology 73,954-961.
18. Mandler, R. N., Anderson, F. A. Jr., Miller, R. G., Clawson, L., Cudkowicz,M.,and Del Bene,M. (2001). The ALS patient care database: insights into end-of-life care in ALS. Amyotroph. Lateral Scler. Other Motor Neuron Disord. 2, 203-208.
19. Miller, R. G., Jackson, C. E., Kasarskis, E. J., England, J. D., Forshew, D., Johnston, W., et al. (2009). Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the quality standards subcommittee of the American academy of neurology. Neurology 73, 1227-1233.
20. Moore,M.,Sadeghi,R.,Gawel,M.,Webster, P., Baryshnik, D., and Zinman, L. (2007). Advance care directives in ALS: when is the right time to talk? Amyotroph. Lateral. Scler. 8(Suppl. 1), 13.
21. Oliver, D., Campbell, C., Sloan, R., Sykes, N., Tallon, C., Webb, S., et al. (2007). End-of-life care and decision making in ALS/MND: a crosscultural study. Amyotroph. Lateral. Scler. 8(Suppl. 1), 13.
22. Olney, R. K., and Lomen-Hoerth, C. (2005). Exit strategies in ALS: an influence of depression or despair? Neurology 65, 9-10.
23. Pagnini, F., Lunetta, C., Rossi, G., Banfi, P., Gorni, K., Cellotto, N., et al. (2011). Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers. Amyotroph. Lateral Scler. 12, 105-108.
24. Palmieri, A., Soraru, G., Albertini, E., Semenza, C., Vottero-Ris, F., D'ascenzo, C., et al. (2010). Psychopathological features and suicidal ideation in amyotrophic lateral sclerosis patients. Neurol. Sci. 31, 735-740.
25. R Development Core Team. (2011). R: A Language and Environment for Statistical Computing. Vienna: R Foundation for Statistical Computing.
26. Rabkin, J. G.,Albert, S. M., Del Bene, M. L., O'sullivan, I., Tider, T., Rowland, L. P., et al. (2005). Prevalence of depressive disorders and change over time in late-stage ALS. Neurology 65, 62-67.
27. Rabkin, J. G., Wagner, G. J., and Del Bene, M. (2000). Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom. Med. 62, 271-279.
28. Reiter-Theil, S. (2006). Aerztliche Beihilfe zum Suizid oder "Laienhilfe?" Ein Vergleich zwischen der Schweiz, Oregon und den Niederlanden. Vorgänge Heft 3, 117-135.
29. Robbins, R. A., Simmons, Z., Bremer, B. A., Walsh, S. M., and Fischer, S. (2001). Quality of life in ALS is maintained as physical function declines. Neurology 56, 442-444.
30. 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, 79-85.
31. van der Heide, A., Deliens, L., Faisst, K., Nilstun, T., Norup, M., Paci, E., et al. (2003). End-of-life decisionmaking in six European countries: descriptive study. Lancet 362, 345-350.
32. Veldink, J. H., Wokke, J. H., Van Der Wal, G., Vianney De Jong, J. M., and Van Den Berg, L. H. (2002). Euthanasia and physicianassisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N. Engl. J. Med. 346, 1638-1644.