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Amyotrophic Lateral Sclerosis Volume 9, 2008 - Issue 2
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Original Article

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

Peter Kühnlein Department of Neurology, University of Ulm, UlmCorrespondence[email protected]
,
Andrea Kübler Institute of Medical Psychology and Behavioural Neurobiology, University of Tübingen, Tübingen, Germany; Clinical and Health Psychology Research Centre, School of Human and Life Sciences, Roehampton University, London, UK
,
Sabine Raubold Department of Neurology, University of Ulm, Ulm
,
Marcia Worrell Clinical and Health Psychology Research Centre, School of Human and Life Sciences, Roehampton University, London, UK
,
Anja Kurt Department of Neurology, University of Ulm, Ulm
,
Hans‐Jürgen Gdynia Department of Neurology, University of Ulm, Ulm
,
Anne‐Dorte Sperfeld Department of Neurology, University of Ulm, Ulm
&
Albert Christian Ludolph Department of Neurology, University of Ulm, Ulm
 show all
Pages 91-98 | Received 24 Nov 2007, Accepted 25 Nov 2007, Published online: 10 Jul 2009

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Bridget J. Perry, J. Nelson, J.B. Wong & D.M. Kent. (2022) Predicting dysphagia onset in patients with ALS: the ALS dysphagia risk score. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:3-4, pages 271-278.
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Ralf Stutzki, Markus Weber, Stella Reiter-Theil, Urs Simmen, Gian Domenico Borasio & Ralf J. Jox. (2014) Attitudes towards hastened death in ALS: A prospective study of patients and family caregivers. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 15:1-2, pages 68-76.
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Articles from other publishers (36)

André Maier, Christoph Münch & Thomas Meyer. (2023) Der Einsatz von Patient-reported Outcome Measures (PROM) und die Perspektive digitaler Biomarker bei der Amyotrophen Lateralsklerose. Klinische Neurophysiologie 54:01, pages 28-34.
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Eleanor Wilson, Jeong-Su Lee, David Wenzel & Christina Faull. (2022) The Use of Mechanical Ventilation Support at the End of Life in Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A Scoping Review. Brain Sciences 12:9, pages 1162.
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Véronique Danel Brunaud. (2022) Chapitre 4. Évaluation éthique des téléconsultations de suivi des patients atteints de sclérose latérale amyotrophique en phase avancée. Journal international de bioéthique et d'éthique des sciences Vol. 32:4, pages 87-100.
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Katharina Linse, Elisa Aust, René Günther & Andreas Hermann. (2022) Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?. Journal of Clinical Medicine 11:1, pages 254.
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Anke Erdmann, Celia Spoden, Irene Hirschberg & Gerald Neitzke. (2022) Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review. Palliative Care and Social Practice 16, pages 263235242210836.
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Ujwal Chaudhary, Bankim Subhash Chander, Avi Ohry, Andres Jaramillo-Gonzalez, Dorothée Lulé & Niels Birbaumer. (2021) Brain Computer Interfaces for Assisted Communication in Paralysis and Quality of Life. International Journal of Neural Systems 31:11.
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Anna G. Hauswirth, Hannah C. George & Catherine Lomen‐Hoerth. (2021) ALS patient and caregiver attitudes toward physician‐hastened death in C alifornia . Muscle & Nerve 64:4, pages 428-434.
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Anke Erdmann, Celia Spoden, Irene Hirschberg & Gerald Neitzke. (2021) The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review. BMJ Supportive & Palliative Care 11:3, pages 271-287.
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Shelagh K. Genuis, Westerly Luth, Sandra Campbell, Tania Bubela & Wendy S. Johnston. (2021) Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence. Frontiers in Neurology 12.
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Bridget J. Perry, Kaila L. Stipancic, Rosemary Martino, Emily K. Plowman & Jordan R. Green. (2020) Biomechanical Biomarkers of Tongue Impairment During Swallowing in Persons Diagnosed with Amyotrophic Lateral Sclerosis. Dysphagia 36:1, pages 147-156.
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Maike F. Dohrn & Roman Rolke. 2021. Public Policy in ALS/MND Care. Public Policy in ALS/MND Care 107 120 .
Dorothée Lulé, Albert C. Ludolph, Martin Groß & Jana Alber. 2020. Neurologische Beatmungsmedizin. Neurologische Beatmungsmedizin 441 456 .
Jocelyn Zwicker, Danial Qureshi, Robert TalaricoPierre Bourque, Mary Scott, Nicolas Chin-Yee & Peter Tanuseputro. (2019) Dying of amyotrophic lateral sclerosis. Neurology 93:23.
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Mike Kampelmacher & Piet van Leeuwen. 2018. De dokter en de dood. De dokter en de dood 133 140 .
D Addala, R Shrimanker & MG Davies. (2017) Non-invasive ventilation: initiation and initial management. British Journal of Hospital Medicine 78:9, pages C140-C144.
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V. Danel-Brunaud, L. Touzet, L. Chevalier, C. Moreau, D. Devos, S. Vandoolaeghe & L. Defebvre. (2017) Ethical considerations and palliative care in patients with amyotrophic lateral sclerosis: A review. Revue Neurologique 173:5, pages 300-307.
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Mitsuko Ushikubo, Mitsue Iida, Miyuki Suzuki & Kyoko Sasaki. (2017) Literature Review of Palliative End-of-Life Care for Patients with Amyotrophic Lateral Sclerosis under Non-invasive Positive-pressure Ventilation. The KITAKANTO Medical Journal The Kitakanto Medical Journal 67:1, pages 55-62.
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M. Köhrmann & E. M. Sauer. 2017. Pflegewissen Stroke Unit. Pflegewissen Stroke Unit 67 91 .
A Craig Davidson, Stephen Banham, Mark Elliott, Daniel Kennedy, Colin Gelder, Alastair Glossop, Alistair Colin Church, Ben Creagh-Brown, James William Dodd, Tim Felton, Bernard Foëx, Leigh Mansfield, Lynn McDonnell, Robert Parker, Caroline Marie Patterson, Milind Sovani & Lynn Thomas. (2016) BTS/ICS guideline for the ventilatory management of acute hypercapnic respiratory failure in adults. Thorax 71:Suppl 2, pages ii1-ii35.
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Sabrina Cipolletta & Linda Amicucci. (2015) The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study. International Journal of Psychology 50:4, pages 288-294.
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T. Nehrych, M. Papish & M. Shorobura. (2015) Euthanasia and Physician-assisted Suicide in Patients with Amyotrophic Lateral Sclerosis (Review of the Literature and Description of a Clinical Case). Lviv clinical bulletin 2-3:10-11, pages 61-64.
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Mitsuko Ushikubo. (2014) Comparison Between Home and Hospital as the Place of Death for Individuals With Amyotrophic Lateral Sclerosis in the Last Stages of Illness. American Journal of Hospice and Palliative Medicine® 32:4, pages 417-426.
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Sheelah Connolly, Miriam Galvin & Orla Hardiman. (2015) End-of-life management in patients with amyotrophic lateral sclerosis. The Lancet Neurology 14:4, pages 435-442.
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Takamura Nagasaka & Yoshihisa Takiyama. 2015. Neurodegenerative Disorders as Systemic Diseases. Neurodegenerative Disorders as Systemic Diseases 237 275 .
Dorothée Lulé, Sonja Nonnenmacher, Sonja Sorg, Johanna Heimrath, Martin Hautzinger, Thomas Meyer, Andrea Kübler, Niels Birbaumer & Albert C. Ludolph. (2014) Live and let die: existential decision processes in a fatal disease. Journal of Neurology 261:3, pages 518-525.
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Dorothée Lulé, Benedikt Ehlich, Dirk Lang, Sonja Sorg, Johanna Heimrath, Andrea Kübler, Niels Birbaumer & Albert C. Ludolph. (2013) Quality of life in fatal disease: the flawed judgement of the social environment. Journal of Neurology 260:11, pages 2836-2843.
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Juan Manuel Núñez Olarte, Manuel Conti Jiménez, Coro Pérez Aznar, María Sánchez Isac, Natalia Cantero Sánchez, María Luisa Solano Garzón & Susana Guevara Méndez. (2013) Auditoría clínica del manejo de la esclerosis lateral amiotrófica en situación terminal: resultados preliminares. Medicina Paliativa 20:4, pages 133-142.
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Anneli O Ozanne, Ulla H Graneheim & Susann Strang. (2013) Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients. Journal of Clinical Nursing 22:15-16, pages 2141-2149.
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Deborah B. McGuire, Marian Grant & Jumin Park. (2012) Palliative care and end of life: The caregiver. Nursing Outlook 60:6, pages 351-356.e20.
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Kirsten L. Gruis & Noah Lechtzin. (2012) Respiratory therapies for amyotrophic lateral sclerosis: A primer. Muscle & Nerve 46:3, pages 313-331.
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Natalie Evans, Claudia Bausewein, Arantza Meñaca, Erin V.W. Andrew, Irene J. Higginson, Richard Harding, Robert Pool & Marjolein Gysels. (2012) A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance. Patient Education and Counseling 87:3, pages 277-288.
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Marjolein Gysels, Natalie Evans, Arantza Meñaca, Erin Andrew, Franco Toscani, Sylvia Finetti, H. Roeline Pasman, Irene Higginson, Richard Harding & Robert Pool. (2012) Culture and End of Life Care: A Scoping Exercise in Seven European Countries. PLoS ONE 7:4, pages e34188.
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Pia Sander DreyerMichael FeldingCharlotte Sønderskov KlitnæsCharlotte Kirkegård Lorenzen. (2012) Withdrawal of Invasive Home Mechanical Ventilation in Patients with Advanced Amyotrophic Lateral Sclerosis: Ten Years of Danish Experience. Journal of Palliative Medicine 15:2, pages 205-209.
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João Carlos Winck & Miguel R. Gonçalves. (2011) The evolution of practice of noninvasive ventilation: epidemiologic outcomes and patient’s preference. Journal of Medicine and the Person 9:1, pages 1-5.
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Stefano Nava & Nicholas Hill. (2009) Non-invasive ventilation in acute respiratory failure. The Lancet 374:9685, pages 250-259.
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D. Lulé, C. Zickler, S. Häcker, M.A. Bruno, A. Demertzi, F. Pellas, S. Laureys & A. Kübler. 2009. Coma Science: Clinical and Ethical Implications. Coma Science: Clinical and Ethical Implications 339 351 .

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