Academic journal article Health and Social Work

Amyotrophic Lateral Sclerosis Patients' Perspectives on Use of Mechanical Ventilation

Academic journal article Health and Social Work

Amyotrophic Lateral Sclerosis Patients' Perspectives on Use of Mechanical Ventilation

Article excerpt

A myotrophic lateral sclerosis (ALS) is a progressive neurological disease that causes severe physical disability and generally leads to death within three years of diagnosis. People with ALS rarely suffer intellectual or sensory impairment, so they remain mentally competent until death. At some point in their disease, most people with ALS face life-threatening ventilatory insufficiency and must make a decision whether to use mechanical ventilatory support. If a decision is made to use mechanical ventilation, life may be prolonged for an indefinite time, possibly several years. The disease process of ALS, however, continues, causing ever-greater physical dysfunction. Advanced medical technology and the current move toward increasing patient autonomy have placed people with ALS in a new and powerful position in determining whether to prolong their lives once natural breathing is inadequate (Cassel 1980; Goldblatt & Greenlaw, 1989; Jackson & Younger, 1979; President's Commission, 1983; Schneiderman & Spragg, 1988).

Historically, decisions concerning the use of mechanical ventilation have been made by physicians. However, with the present trend toward greater patient control over treatment decisions, including the increasingly widespread use of health care directives (for example, living wills), many patients with ALS are becoming involved in making this decision.

This study explores the issue of the use of mechanical ventilation from the patients' perspectives. It examines the process of and factors involved in decision making by people severely disabled by ALS when they face the choice of whether to use mechanical ventilatory support. Issues addressed include patients' views on who should make this decision, the importance of several factors including quality of life and impact on family, the decision as related to level of disability, and the availability of ventilation by means of a nasal mask versus a tracheostomy. Although the literature offers insights into decision making regarding use of life support measures from the viewpoints of health care professionals (Goldblatt & Greenlaw, 1989), there is a dearth of information from patients' perspectives. Our study is an initial examination of this compelling but complex subject from their perspective. It is hoped that the results of this study will afford some guidance and understanding regarding this issue and direction for improving services and developing new programs for people with ALS.



This qualitative research was carried out between September and December 1992 at the British Columbia Rehabilitation Society, G. F. Strong Centre, in Vancouver, British Columbia. The G. F. Strong Centre has an outpatient ALS program serving 60 to 70 individuals, representing about one-third of the population of people with the disease living in British Columbia.

The research format included 16 general questions, a list of 18 factors, and a demographic information questionnaire. The general questions focused on obtaining information regarding the process of the participant in considering the use of mechanical ventilation, the current decision regarding use of mechanical ventilation, the input and influence of others, and commitment to the decision.

On the basis of eight years of clinical experience with people with ALS, the authors developed a list of TABULAR DATA OMITTED potential factors to identify and quantify the importance of 18 possible influences on the decision. Factors were defined by the participant as considered, not considered, or not applicable in the decision-making process. The factors considered were then rated on a scale of 0 to 10 indicating their level of importance and whether the factors supported or discouraged the use of mechanical ventilation.

In addition, at the time of the interview, the participants were rated by the principal author on function in the areas of speech, swallowing, lower extremities, and upper extremities using the ALS Severity Scale (Hillel et al. …

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