Study objectives: Although long-term ventilation (LTV)
has been shown to extend the lives of individuals with Duchenne
muscular dystrophy (DMD), initiating LTV is still considered
controversial. The purpose of the study was to describe the LTV-related
attitudes and practices of Canadian physicians who follow up patients
Design: The study consisted of a mail
questionnaire supplemented by face-to-face interviews.
Participants: Forty-five physicians who follow up patients
with DMD through Canadian neuromuscular clinics.
Measurements: A mail questionnaire of 66 closed-ended
questions related to practice and attitudes was completed by all
respondents. Qualitative semistructured interviews were conducted with
six volunteer physicians, and were audiotaped and transcribed.
Results: The results indicated that 25.0% of physicians do
not discuss LTV with all of their DMD patients. The most frequently
cited reason for advising against LTV was poor patient quality of life
(52.6%). Three themes emerged from the qualitative data: mentioning
and discussing LTV are discrete events with different purposes,
nighttime and full-time LTV decisions are approached differently, and
physicians modify their discussions to influence outcome.
Conclusions: The study demonstrated considerable agreement
among the physicians regarding disclosure practices. Concerns are
raised by the number of physicians who do not disclose to all patients
and families and the role of quality-of-life judgments in decision
making. It is suggested that because of their subjective nature,
quality-of-life judgments should not be made without the participation
of the patient and family, and that an initial disclosure is the
minimum requirement of informed consent/decision