Abstract
In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09–0.46] and heart failure patients [OR 0.16, 95% CI 0.05–0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.
Similar content being viewed by others
References
Asai A, Ohnishi M, Nagata SK, Tanida N, Yamazaki Y (2001) Doctors’ and nurses’ attitudes towards and experiences of voluntary euthanasia: survey of members of the Japanese Association of Palliative Medicine. J Med Ethics 27:324–330
Borasio GD, Voltz R (1998) Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis. J Neurol 245:717–722
Bradley WG, Anderson F, Bromberg M, Gutmann L, Harati Y, Ross M, Miller RG (2001) Current management of ALS: comparison of the ALS CARE database and the AAN practice parameter. The American Academy of Neurology. Neurology 57:500–504
Chio A, Gauthier A, Montuschi A, Calvo A, Di VN, Ghiglione P, Mutani R (2004) A cross sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry 75:1597–1601
Committee on National Guidelines for Palliative Sedation Royal Dutch Medical Association (KNMG) (2005) Guidelines for palliative sedation of Royal Dutch Medical Association (KMMG)
Corcia P, Pradat PF, Salachas F, Bruneteau G, Forestier N, Seilhean D, Hauw JJ, Meininger V (2008) Causes of death in a post-mortem series of ALS patients. Amyotroph Lateral Scler 9:59–62
Czaplinski A, Yen AA, Appel SH (2006) Amyotrophic lateral sclerosis: early predictors of prolonged survival. J Neurol 253:1428–1436
Ganzini L, Johnston WS, Silveira MJ (2002) The final month of life in patients with ALS. Neurology 59:428–431
Neudert C, Oliver D, Wasner M, Borasio GD (2001) The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol 248:612–616
Onwuteaka-Philipse BD, Jansen-van der Weide MC, Pasman HRW, van der Wal G (2003) Support and consultation in euthanasia in the Netherlands (in Dutch). KNMG, Amsterdam
Onwuteaka-Philipsen BD, van der Heide A, Koper D, Keij-Deerenberg I, Rietjens JA, Rurup ML, Vrakking AM, Georges JJ, Muller MT, van der Wal G, van der Maas PJ (2003) Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet 362:395–399
Phukan J, Hardiman O (2009) The management of amyotrophic lateral sclerosis. J Neurol 256:176–186
van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, Janssen AG, Pasman HR, Rietjens JA, Prins CJ, Deerenberg IM, Gevers JK, van der Maas PJ, van der Wal G (2007) End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 356:1957–1965
van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E, van der WG, van der Maas PJ (2003) End-of-life decision-making in six European countries: descriptive study. Lancet 362:345–350
van der Wal G, Onwuteaka-Philipsen BD (1996) Cases of euthanasia and assisted suicide reported to the public prosecutor in North Holland over 10 years. BMJ 312:612–613
Veldink JH, Wokke JH, van der Wal G, Vianney de Jong JM, van den Berg LH (2002) Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med 346:1638–1644
Wahle M, Haller S, Spiegel R (1996) Validation of the NOSGER (Nurses’ Observation Scale for Geriatric Patients): reliability and validity of a caregiver rating instrument. Int Psychogeriatr 8:525–547
Wilson KG, Chochinov HM, McPherson CJ, Skirko MG, Allard P, Chary S, Gagnon PR, Macmillan K, De LM, O’Shea F, Kuhl D, Fainsinger RL, Karam AM, Clinch JJ (2007) Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol 26:314–323
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Maessen, M., Veldink, J.H., van den Berg, L.H. et al. Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients. J Neurol 257, 1192–1198 (2010). https://doi.org/10.1007/s00415-010-5474-y
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00415-010-5474-y