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4/2023
vol. 61
 
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Original paper

Attitudes of caregivers towards prolonging and shortening life in advanced stages of amyotrophic lateral sclerosis

Anna Maksymowicz-Śliwińska
1
,
Dorothée Lulé
2
,
Krzysztof Nieporęcki
1, 3
,
Katarzyna Ciećwierska
1
,
Albert C. Ludolph
4
,
Magdalena Kuźma-Kozakiewicz
3, 5

  1. Department of Neurology, University Clinical Centre of the Medical University of Warsaw, Warsaw, Poland
  2. Department of Neurology, University of Ulm, Ulm, Germany
  3. Department of Neurology, Medical University of Warsaw, Warsaw, Poland
  4. German Center of Neurodegenerative Diseases (DZNE), Ulm, Germany
  5. Neurodegenerative Diseases Research Group, Medical University of Warsaw, Warsaw, Poland
Folia Neuropathol 2023; 61 (4): 349-359
DOI: https://doi.org/10.5114/fn.2023.130444
Online publish date: 2023/11/21
Article file
- Attitudes.pdf  [0.13 MB]
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1. Abrahams S, Newton J, Niven E, Foley J, Bak TH. Screening for cognition and behaviour changes in ALS. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15: 9-14.
2. Achille MA, Ogloff JR. Attitudes toward and desire for assisted suicide among persons with amyotrophic lateral sclerosis. Omega (Westport) 2003-2004; 48: 1-21.
3. Albert SM, Rabkin JG, Del Bene ML, Tider T, O’Sullivan I, Rowland LP, Mitsumoto H. Wish to die in end-stage ALS. Neurology 2005; 65: 68-74.
4. Albert SM, Whitaker A, Rabkin JG, del Bene M, Tider T, O’Sullivan I, Mitsumoto H. Medical and supportive care among people with ALS in the months before death or tracheostomy. J Pain Symptom Manage 2009; 38: 546-553.
5. Andersen PM, Kuzma-Kozakiewicz M, Keller J, Aho-Oezhan HEA, Ciecwierska K, Szejko N, Vázquez C, Böhm S, Badura-Lotter G, Meyer T, Petri S, Linse K, Hermann A, Semb O, Stenberg E, Nackberg S, Dorst J, Uttner I, Häggström AC, Ludolph AC, Lulé D. Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications. J Neurol 2018; 265: 1600-1606.
6. Andersen PM, Kuźma-Kozakiewicz M, Keller J, MaksymowiczŚliwińska A, Barć K, Nieporęcki K, Finsel J, Vazquez C, Helczyk O, Linse K, Häggström AC, Stenberg E, Semb O, Ciećwierska K, Szejko N, Uttner I, Herrmann A, Petri S, Meyer T, Ludolph AC, Lulé D. Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden. Amyotroph Lateral Scler Frontotemporal Degener 2022; 23: 252-262.
7. Barć K, Lulé D, Finsel J, Helczyk O, Baader S, Aho-Özhan H, Ludolph AC, Kuźma-Kozakiewicz M. Well-being on supportive techniques in amyotrophic lateral sclerosis: from neurologists’ perspective. Ann Clin Transl Neurol 2022; 9: 1874-1883.
8. Baxter SK, Baird WO, Thompson S, Bianchi SM, Walters SJ, Lee E, Ahmedzai SH, Proctor A, Shaw PJ, McDermott CJ. The use of non-invasive ventilation at end of life in patients with motor neurone disease: a qualitative exploration of family carer and health professional experiences. Palliat Med 2013; 27: 516-523.
9. Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagáin D, Borasio GD, Hardiman O. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry 2011; 82: 413-418.
10. Bernheim JL. How to get serious answers to the serious question: “How have you been?”: subjective quality of life (QOL) as an individual experiential emergent construct. Bioethics 1999; 13: 272-287.
11. Brooks BR, Miller RG, Swash M, Munsat TL; World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2000; 1: 293-299.
12. Castanheira A, Swash M, De Carvalho M. Percutaneous gastrostomy in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler Frontotemporal Degener 2022; 23: 176-189.
13. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci 1999; 169: 13-21.
14. Cohen R, Leis AM, Kuhl D, Charbonneau C, Ritvo P, Ashbury FD. QOLLTI-F: measuring family carer quality of life. Palliat Med 2006; 20: 755-767.
15. Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol 2015; 14: 435-442.
16. Creemers H, de Morée S, Veldink JH, Nollet F, van den Berg LH, Beelen A. Factors related to caregiver strain in ALS. J Neurol Neurosurg Psychiatry 2016; 87: 775-781.
17. Dorst J, Ludolph AC. Non-invasive ventilation in amyotrophic lateral sclerosis. Ther Adv Neurol Disord 2019; 12: 1756286419857040.
18. EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis:, Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, Hardiman O, Kollewe K, Morrison KE, Petri S, Pradat PF, Silani V, Tomik B, Wasner M, Weber M. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)-revised report of an EFNS task force. Eur J Neurol 2012; 19: 360-375.
19. Erdmann A, Spoden C, Hirschberg I, Neitzke G. Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review. Palliat Care Soc Pract 2022; 16: 26323524221083676.
20. Foley G, Timonen V, Hardiman O. Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qual Health Res 2014; 24: 67-77.
21. Gale C. Assisting patients with motor neurone disease to make decisions about their care. Int J Palliat Nurs 2015; 21: 251-255.
22. Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide. N Engl J Med 1998; 339: 967-973.
23. 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: 312-317.
24. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, Mutani R, Chiò A. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 2007; 68: 923-926.
25. Hogden A, Greenfield D, Nugus P, Kiernan MC. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Prefer Adherence 2013; 7: 171-181.
26. Idler EL. Religious involvement and the health of the elderly: some hypotheses and an initial test. Social Forces 1987; 66: 226-238.
27. Kasarskis EJ, Mendiondo MS, Wells S, Malguizo MS, Thompson M, Healey M, Kryscio RJ; ALS Nutrition/NIPPV Study Group. The ALS Nutrition/NIPPV Study: design, feasibility, and initial results. Amyotroph Lateral Scler 2011; 12: 17-25.
28. Kaub-Wittemer D, Steinbüchel Nv, Wasner M, Laier-Groeneveld G, Borasio GD. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage 2003; 26: 890-896.
29. Kuzma-Kozakiewicz M, Andersen PM, Ciecwierska K, Vázquez C, Helczyk O, Loose M, Uttner I, Ludolph AC, Lulé D. An observational study on quality of life and preferences to sustain life in locked-in state. Neurology 2019; 93: e938-e945.
30. López-Gómez JJ, Ballesteros-Pomar MD, Torres-Torres B, Pintor-De la Maza B, Penacho-Lázaro MA, Palacio-Mures JM, Abreu-Padín C, Sanz-Gallego I, De Luis-Román DA. Impact of percutaneous endoscopic gastrostomy (PEG) on the evolution of disease in patients with amyotrophic lateral sclerosis (ALS). Nutrients 2021; 13: 2765.
31. Ludolph AC, Dorst J, Dreyhaupt J, Weishaupt JH, Kassubek J, Weiland U, Meyer T, Petri S, Hermann A, Emmer A, Grosskreutz J, Grehl T, Zeller D, Boentert M, Schrank B, Prudlo J, Winkler AS, Gorbulev S, Roselli F, Schuster J, Dupuis L; LIPCAL-ALS Study Group. Effect of high-caloric nutrition on survival in amyotrophic lateral sclerosis. Ann Neurol 2020; 87: 206-216.
32. Lulé D, Ehlich B, Lang D, Sorg S, Heimrath J, Kübler A, Birbaumer N, Ludolph AC. Quality of life in fatal disease: the flawed judgement of the social environment. J Neurol 2013; 260: 2836-2843.
33. Lulé D, Nonnenmacher S, Sorg S, Heimrath J, Hautzinger M, Meyer T, Kübler A, Birbaumer N, Ludolph AC. Live and let die: existential decision processes in a fatal disease. J Neurol 2014; 261: 518-525.
34. Lulé D, Zickler C, Häcker S, Bruno MA, Demertzi A, Pellas F, Laureys S, Kübler A. Life can be worth living in locked-in syndrome. Prog Brain Res 2009; 177: 339-351.
35. Maessen M, Veldink JH, Onwuteaka-Philipsen BD, de Vries JM, Wokke JH, van der Wal G, van den Berg LH. Trends and determinants of end-of-life practices in ALS in the Netherlands. Neurology 2009; 73: 954-961.
36. 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: 1192-1198.
37. Maksymowicz-Śliwińska A, Lulé D, NieporĘcki K, Ciećwierska K, Ludolph AC, Kuźma-Kozakiewicz M. The quality of life and depression in primary caregivers of patients with amyotrophic lateral sclerosis is affected by patient-related and culture-specific conditions. Amyotroph Lateral Scler Frontotemporal Degener 2023; 24: 317-326.
38. Matuz T, Birbaumer N, Hautzinger M, Kübler A. Coping with amyotrophic lateral sclerosis: an integrative view. J Neurol Neurosurg Psychiatry 2010; 81: 893-898.
39. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, Kalra S, Katz JS, Mitsumoto H, Rosenfeld J, Shoesmith C, Strong MJ, Woolley SC; Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009; 73: 1218-1226.
40. Mustfa N, Walsh E, Bryant V, Lyall RA, Addington-Hall J, Goldstein LH, Donaldson N, Polkey MI, Moxham J, Leigh PN. The effect of noninvasive ventilation on ALS patients and their caregivers. Neurology 2006; 66: 1211-1217.
41. Naczelna Izba Lekarska. Kodeks Etyki Lekarskiej nowelizacja z dnia 20.09.2003r. https://nil.org.pl/uploaded_images/1576053297_kodeks-etyki-lekarskiej.pdf (accessed: 3 February 2023).
42. Oliver DJ, Turner MR. Some difficult decisions in ALS/MND. Amyotroph Lateral Scler 2010; 11: 339-343.
43. Praxmarer V, Lahrmann H. Amyotrophic lateral sclerosis – when planning is almost too late. Wien Med Wochenschr 2006; 156: 297-301 [German].
44. Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med 2000; 62: 271-279.
45. Raheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotroph Lateral Scler Frontotemporal Degener 2016; 17: 198-205.
46. Rousseau MC, Pietra S, Blaya J, Catala A. Quality of life of ALS and LIS patients with and without invasive mechanical ventilation. J Neurol 2011; 258: 1801-1804.
47. Schischlevskij P, Cordts I, Günther R, Stolte B, Zeller D, Schröter C, Weyen U, Regensburger M, Wolf J, Schneider I, Hermann A, Metelmann M, Kohl Z, Linker RA, Koch JC, Stendel C, Müsch-en LH, Osmanovic A, Binz C, Klopstock T, Dorst J, Ludolph AC, Boentert M, Hagenacker T, Deschauer M, Lingor P, Petri S, Schreiber-Katz O. Informal caregiving in amyotrophic lateral sclerosis (ALS): A high caregiver burden and drastic consequences on caregivers’ lives. Brain Sci 2021; 11: 748.
48. Siciliano M, Santangelo G, Trojsi F, Di Somma C, Patrone M, Femiano C, Monsurrò MR, Trojano L, Tedeschi G. Coping strategies and psychological distress in caregivers of patients with amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener 2017; 18: 367-377.
49. Smyth A, Riedl M, Kimura R, Olick R, Siegler M. End of life decisions in amyotrophic lateral sclerosis: a cross-cultural perspective. J Neurol Sci 1997; 152 Suppl 1: S93-96.
50. Spataro R, Marchese S, La Bella V. Tracheostomy mechanical ventilation in amyotrophic lateral sclerosis. J Neurol Sci 2013; 328: 103-104.
51. Stutzki R, Weber M, Reiter-Theil S, Simmen U, Borasio GD, Jox RJ. Attitudes towards hastened death in ALS: a prospective study of patients and family caregivers. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15: 68-76.
52. 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: 1638-1644.
53. Veronese S, Valle A, Chiò A, Calvo A, Oliver D. The last months of life of people with amyotrophic lateral sclerosis in mechanical invasive ventilation: a qualitative study. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15: 499-504.
54. Weber C, Fijalkowska B, Ciecwierska K, Lindblad A, Badura-Lotter G, Andersen PM, Kuźma-Kozakiewicz M, Ludolph AC, Lulé D, Pasierski T, Lynöe N. Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter? BMC Palliat Care 2017; 16: 80.
55. Yoon KH, Moon YS, Lee Y, Choi SH, Moon SY, Seo SW, Park KW, Ku BD, Han HJ, Park KH, Han SH, Kim EJ, Lee JH, Park SA, Shim YS, Kim JH, Hong CH, Na DL, Ye BS, Kim HJ, Moon Y, Lee SS, Kim DH; CARE (Caregivers of Alzheimer’s Disease Research) Investigators. The moderating effect of religiosity on caregiving burden and depressive symptoms in caregivers of patients with dementia. Aging Ment Health 2018; 22: 141-147.
Copyright: © 2023 Mossakowski Medical Research Centre Polish Academy of Sciences and the Polish Association of Neuropathologists. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) License (http://creativecommons.org/licenses/by-nc-sa/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material, provided the original work is properly cited and states its license.
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