CHEST
Ethics in Cardiopulmonary MedicineLong-term Ventilation for Patients With Duchenne Muscular Dystrophy: Physicians' Beliefs and Practices
Section snippets
Materials and Methods
Ethics approval for the study was obtained from the Universityof Toronto Research Ethics Board. A questionnaire of 67 closed-endeditems was sent to all physicians identified through provincial MuscularDystrophy Association branches as directors, co-directors, orrespirologists associated with a Canadian neuromuscular clinic. Administration of the questionnaire occurred between the months of February and April 1997. The questions were developed based on theprimary investigator's clinical
Questionnaire
Eighty-three physicians were initially sent a questionnaire. Ofthese, 23 physicians were excluded from the study because they were nolonger practicing in Canada or they were not following up patients with DMD, leaving a total of 60 physicians from 34 clinics appropriate forthe study. Forty-five questionnaires from 29 clinics were returned fora physician-response rate of 75.0% and a clinic-response rate of85.3%. The mean age of the respondents was 47.0 ± 8.2 years. Themajority of the respondents
Discussion
Physicians have both an ethical and legal responsibility todisclose available treatment options to theirpatients.12131415 Furthermore, assisting patients to makeinformed choices that are consistent with their own values and preferences requires physicians to engage patients and their familiesin a process of mutual participation in decision making that requiresmore than simple disclosure.16 The survey revealed that25% of the physicians did not disclose the option of LTV to some of their patients
Summary
This study revealed that Canadian physicians vary in theirapproach to LTV decisions. While the majority of physicians disclosethe option of LTV to patients with DMD and their families, 25% saidthey do not always disclose. Furthermore, the qualitative data showedthat different physicians framed information either positively ornegatively depending on their own preferences and, despite a desire tobe impartial, agreed that they had significant influence over thefamilies' decisions. It is suggested
ACKNOWLEDGMENT
I thank Dr. Karen Yoshida, Dr. William Harvey, and Dr. Laura Shanner for their support and advice during the research, and Dr. Dina Brooks for her comments on earlier versions of this article. Iwould also like to thank all the physician participants who generouslygave of their time on the study, particularly those who agreed to beinterviewed.
References (29)
- et al.
Cross-cultural adaptation of health related quality of life measures: literature review and proposed guidelines
J Clin Epidemiol
(1993) - et al.
Quality of life after spinal cord injury: knowledge and attitudes of emergency care providers
Ann Emerg Care Med
(1994) End stage Duchenne patients: choosing between respirator and natural death
Pulmonary rehabilitation considerations for Duchenne muscular dystrophy: the prolongation of life by respiratory muscle aids
Crit Rev Phys Rehabil Med
(1992)- et al.
Pulmonary care of Duchenne type of dystrophy
NY State J Med
(1973) - et al.
Ventilator management in Duchenne muscular dystrophy and post poliomyelitis syndrome: twelve years experience
Arch Phys Med Rehabil
(1989) Ventilator use by muscular dystrophy association patients
Arch Phys Med Rehabil
(1992)The MIDS (Modified Issues in Disability Scale)
(1985)In the MIDSt: Modified Issues in Disability Scale testing
Mail and telephone surveys: the total design method
(1978)
Sampling in qualitative inquiry
Bioethics for clinicians: 1. Consent
Can Med Assoc J
Cited by (88)
Children Dependent on Respiratory Technology
2019, Kendig's Disorders of the Respiratory Tract in ChildrenRehabilitation of the muscular dystrophies
2013, Handbook of Clinical NeurologyCitation Excerpt :Clinicians must incorporate end of life issues as part of their care of patients with MD. One survey found that 25% of physicians did not present long-term ventilation as an option to their patients with DMD (Gibson, 2001). Clinicians need to refrain from using their own perceptions of quality of life as a factor in determining whether or not to give this type of information.
Tracheostomy and long-term invasive ventilation decision-making in children: A scoping review
2024, Pediatric Pulmonology
Performed at the Institute of Medical Sciences, University of Toronto. Financial support was provided by the Ontario Respiratory Care SocietyFellowship.