Literature DB >> 20148336

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients.

Maud Maessen1, Jan H Veldink, Leonard H van den Berg, Henrike J Schouten, Gerrit van der Wal, Bregje D Onwuteaka-Philipsen.   

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.

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Year:  2010        PMID: 20148336     DOI: 10.1007/s00415-010-5474-y

Source DB:  PubMed          Journal:  J Neurol        ISSN: 0340-5354            Impact factor:   4.849


  16 in total

1.  Current management of ALS: comparison of the ALS CARE Database and the AAN Practice Parameter. The American Academy of Neurology.

Authors:  W G Bradley; F Anderson; M Bromberg; L Gutmann; Y Harati; M Ross; R G Miller
Journal:  Neurology       Date:  2001-08-14       Impact factor: 9.910

2.  A cross sectional study on determinants of quality of life in ALS.

Authors:  A Chiò; A Gauthier; A Montuschi; A Calvo; N Di Vito; P Ghiglione; R Mutani
Journal:  J Neurol Neurosurg Psychiatry       Date:  2004-11       Impact factor: 10.154

3.  End-of-life practices in the Netherlands under the Euthanasia Act.

Authors:  Agnes van der Heide; Bregje D Onwuteaka-Philipsen; Mette L Rurup; Hilde M Buiting; Johannes J M van Delden; Johanna E Hanssen-de Wolf; Anke G J M Janssen; H Roeline W Pasman; Judith A C Rietjens; Cornelis J M Prins; Ingeborg M Deerenberg; Joseph K M Gevers; Paul J van der Maas; Gerrit van der Wal
Journal:  N Engl J Med       Date:  2007-05-10       Impact factor: 91.245

4.  Amyotrophic lateral sclerosis: early predictors of prolonged survival.

Authors:  Adam Czaplinski; Albert A Yen; Stanley H Appel
Journal:  J Neurol       Date:  2006-06-13       Impact factor: 4.849

5.  Validation of the NOSGER (Nurses' Observation Scale for Geriatric Patients): reliability and validity of a caregiver rating instrument.

Authors:  M Wahle; S Häller; R Spiegel
Journal:  Int Psychogeriatr       Date:  1996       Impact factor: 3.878

6.  The course of the terminal phase in patients with amyotrophic lateral sclerosis.

Authors:  C Neudert; D Oliver; M Wasner; G D Borasio
Journal:  J Neurol       Date:  2001-07       Impact factor: 4.849

7.  Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands.

Authors:  Jan H Veldink; John H J Wokke; Gerrit van der Wal; J M B Vianney de Jong; Leonard H van den Berg
Journal:  N Engl J Med       Date:  2002-05-23       Impact factor: 91.245

Review 8.  The management of amyotrophic lateral sclerosis.

Authors:  Julie Phukan; Orla Hardiman
Journal:  J Neurol       Date:  2009-02-17       Impact factor: 4.849

9.  Desire for euthanasia or physician-assisted suicide in palliative cancer care.

Authors:  Keith G Wilson; Harvey Max Chochinov; Christine J McPherson; Merika Graham Skirko; Pierre Allard; Srini Chary; Pierre R Gagnon; Karen Macmillan; Marina De Luca; Fiona O'Shea; David Kuhl; Robin L Fainsinger; Andrea M Karam; Jennifer J Clinch
Journal:  Health Psychol       Date:  2007-05       Impact factor: 4.267

10.  End-of-life decision-making in six European countries: descriptive study.

Authors:  Agnes van der Heide; Luc Deliens; Karin Faisst; Tore Nilstun; Michael Norup; Eugenio Paci; Gerrit van der Wal; Paul J van der Maas
Journal:  Lancet       Date:  2003-08-02       Impact factor: 79.321

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  10 in total

1.  Physician-assisted death: A Canada-wide survey of ALS health care providers.

Authors:  Agessandro Abrahao; James Downar; Hanika Pinto; Nicolas Dupré; Aaron Izenberg; William Kingston; Lawrence Korngut; Colleen O'Connell; Nicolae Petrescu; Christen Shoesmith; Anu Tandon; Ana Beatriz Vargas-Santos; Lorne Zinman
Journal:  Neurology       Date:  2016-05-13       Impact factor: 9.910

Review 2.  Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease.

Authors:  Johannes Brettschneider; Jerome Kurent; Albert Ludolph
Journal:  Cochrane Database Syst Rev       Date:  2013-06-05

Review 3.  [Limits of pain treatment: medical and judicial aspects].

Authors:  M Zenz; R Rissing-van Saan
Journal:  Schmerz       Date:  2011-08       Impact factor: 1.107

Review 4.  Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis.

Authors:  Sabrina Paganoni; Chafic Karam; Nanette Joyce; Richard Bedlack; Gregory T Carter
Journal:  NeuroRehabilitation       Date:  2015       Impact factor: 2.138

5.  Wishes to die at the end of life and subjective experience of four different typical dying trajectories. A qualitative interview study.

Authors:  Kathrin Ohnsorge; Christoph Rehmann-Sutter; Nina Streeck; Heike Gudat
Journal:  PLoS One       Date:  2019-01-17       Impact factor: 3.240

Review 6.  Palliative care in motor neurone disease: where are we now?

Authors:  David J Oliver
Journal:  Palliat Care       Date:  2019-01-21

7.  Caregivers' View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis-How Can We Improve Holistic Care in ALS?

Authors:  Katharina Linse; Elisa Aust; René Günther; Andreas Hermann
Journal:  J Clin Med       Date:  2022-01-04       Impact factor: 4.241

8.  Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis.

Authors:  Jonathan R Wolpaw; Richard S Bedlack; Domenic J Reda; Robert J Ringer; Patricia G Banks; Theresa M Vaughan; Susan M Heckman; Lynn M McCane; Charles S Carmack; Stefan Winden; Dennis J McFarland; Eric W Sellers; Hairong Shi; Tamara Paine; Donald S Higgins; Albert C Lo; Huned S Patwa; Katherine J Hill; Grant D Huang; Robert L Ruff
Journal:  Neurology       Date:  2018-06-27       Impact factor: 11.800

9.  Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

Authors:  Harvey Max Chochinov; Wendy Johnston; Susan E McClement; Thomas F Hack; Brenden Dufault; Murray Enns; Genevieve Thompson; Mike Harlos; Ronald W Damant; Clare D Ramsey; Sara Davison; James Zacharias; Doris Milke; David Strang; Heather J Campbell-Enns; Maia S Kredentser
Journal:  PLoS One       Date:  2016-01-25       Impact factor: 3.240

10.  Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention.

Authors:  Moritz Caspar Franz Oberstadt; Peter Esser; Joseph Classen; Anja Mehnert
Journal:  Front Neurol       Date:  2018-04-16       Impact factor: 4.003

  10 in total

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