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Amyotrophic lateral sclerosis and assisted ventilation: How patients decide

Published online by Cambridge University Press:  18 June 2010

Josée Lemoignan  and
Carolyn Ells
Josée Lemoignan*
Affiliation:
Montreal Neurological Hospital ALS Clinic, McGill University Health Center-Montreal, Neurological Hospital, 3801 University Ave., Montreal, Quebec, Canada
Carolyn Ells
Affiliation:
Biomedical Ethics Unit, McGill University Clinical Ethicist, Jewish General Hospital
*
Address correspondence and reprint requests to: Josée Lemoignan, Montreal Neurological Hospital ALS Clinic, McGill University Health Center-Montreal, Neurological Hospital, 3801 University Ave., Montreal, Quebec H3A 2B4, Canada. E-mail: [email protected]
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Abstract

Background: Throughout the course of their illness, people with amyotrophic lateral sclerosis (ALS) must make many treatment decisions; however, none has such a significant impact on quality of life and survival as decisions about assisted ventilation.

Objective: The purpose of this study was to better understand the experience of decision-making about assisted ventilation for ALS patients.

Methods: Using qualitative phenomenology methodology, 10 semi-structured interviews were conducted with persons with ALS and their caregivers to elicit factors that are pertinent to their decision-making process about assisted ventilation.

Results: Six main themes emerged from the interviews. (1) the meaning of the intervention — participants made a sharp distinction between non-invasive ventilation, which they viewed as a means to relieve symptoms of respiratory failure, and invasive ventilation, which they viewed as taking over their breathing and thereby saving their life when they otherwise would die, (2) the importance of context — including functional status, available supports, and financial implications, (3) the importance of values — with respect to communication, relationships, autonomy, life, and quality of life, (4) the effect of fears — particularly respiratory distress, chocking, running out of air, and the process of death itself, (5) the need for information — how use of assisted ventilation would impact daily life, how death from respiratory failure would occur, how caregivers and persons with ALS differ in their information needs and common misconceptions, and (6) adaptation to or acceptance of the intervention — a lengthy process that involved gradual familiarization with the equipment and its benefits.

Significance of the research: People with ALS and caregivers value autonomy in decision-making about assisted ventilation. Their decision-making process is neither wholly rational nor self-interested, and includes factors that health professionals should anticipate and address. Discussions about assisted ventilation and timing should be tailored to each individual and undertaken periodically.

Keywords

Amyotrophic lateral sclerosisDecision analysisProfessional conduct and ethics
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 2 , June 2010 , pp. 207 - 213
Copyright
Copyright © Cambridge University Press 2010

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References

REFERENCES

Borasio, G.D. & Voltz, R. (1998). Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis. Journal of Neurology, 245, 717–722.CrossRefGoogle ScholarPubMed
Foley, G., O'Mahony, P. & Hardiman, O. (2007). Perceptions of quality of life in persons with amyotrophic lateral sclerosis: effects of coping and health care. Amyotrophic lateral sclerosis, 8, 164–169.CrossRefGoogle ScholarPubMed
Hecht, M., Hillemacher, T., Gräsel, E., Tigges, S., Winterholler, M., Heuss, D., Hilz, M-J. & Neundörfer, B. (2002). Subjective experience and coping in ALS. Amyotrophic lateral sclerosis and other motor neuron disoders, 3, 225–232.CrossRefGoogle ScholarPubMed
Hirano, Y., Yamakzaki, Y., Shimizu, J., Togari, T. & Bryce, T. (2005). Ventilator dependence and expression of need: a study of patients with amyotrophic lateral sclerosis in Japan. Social Science & Medicine, 62, 1403–1413.CrossRefGoogle Scholar
Lechtzin, N., Scott, Y., Busse, A.M., Clawson, L.L., Kimball, R. & Wiener, C.M. (2007). Early use of non-invasive ventilation prolongs survival in subjects with ALS. Amyotrophic lateral sclerosis, 8, 185–188.CrossRefGoogle ScholarPubMed
Lo Coco, D., Marchese, S., Pesco, M.C., La Bella, V., Piccoli, F. & Lo Coco, A. (2006). Noninvasive positive-pressure ventilation in ALS: Predictors of tolerance and survival. Neurology, 67, 761–765.CrossRefGoogle ScholarPubMed
Miller, R.G., Rosenberg, J.A., Gelinas, D.F., Mitsumoto, H, Newman, D., Sufit, R., Borasio, G.D., Bradley, W.G., Bromberg, M.B., Brooks, B.R., Kasarskis, E.J., Munsat, T.L. & Oppenheimer, E.A. (1999). Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 52, 1311–1323.CrossRefGoogle Scholar
Mitsumoto, H., Bromberg, M., Johnston, W., Tandan, R.Byock, I., Lyon, M., Miller, R.G., Appel, S.H., Benditt, J., Bernat, J.L., Borasio, G.D., Carver, A.C., Clawson, L., Del Bene, M.L., Kasarskis, E.J., Legrand, S.B., Mandler, R., McCarthy, J., Munsat, T. & Newman, D. (2005). Promoting excellence in end-of-life care in ALS. Amyotrophic lateral sclerosis and other motor neuron disoders, 6, 145–154.CrossRefGoogle ScholarPubMed
Patton, M. (2002). Qualitative research and evaluation methods (3rd edition). Thousand Oaks: Sage Publications.Google Scholar
Young, J., Marshall, C. & Anderson, E. (1994). Amyotrophic lateral sclerosis patient's perspectives on use of mechanical ventilation. Health & Social Work, 19, 253–260.CrossRefGoogle ScholarPubMed