CHEST
Volume 119, Issue 3, March 2001, Pages 940-946
Journal home page for CHEST

Ethics in Cardiopulmonary Medicine
Long-term Ventilation for Patients With Duchenne Muscular Dystrophy: Physicians' Beliefs and Practices

https://doi.org/10.1378/chest.119.3.940Get rights and content

Study objectives:

Although long-term ventilation (LTV)has been shown to extend the lives of individuals with Duchennemuscular dystrophy (DMD), initiating LTV is still consideredcontroversial. The purpose of the study was to describe the LTV-relatedattitudes and practices of Canadian physicians who follow up patientswith DMD.

Design:

The study consisted of a mailquestionnaire supplemented by face-to-face interviews.

Participants:

Forty-five physicians who follow up patientswith DMD through Canadian neuromuscular clinics.

Measurements:

A mail questionnaire of 66 closed-endedquestions related to practice and attitudes was completed by allrespondents. Qualitative semistructured interviews were conducted with six volunteer physicians, and were audiotaped and transcribed.

Results:

The results indicated that 25.0% of physicians donot discuss LTV with all of their DMD patients. The most frequentlycited reason for advising against LTV was poor patient quality of life(52.6%). Three themes emerged from the qualitative data: mentioningand 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 agreementamong the physicians regarding disclosure practices. Concerns areraised by the number of physicians who do not disclose to all patientsand families and the role of quality-of-life judgments in decisionmaking. It is suggested that because of their subjective nature, quality-of-life judgments should not be made with out the participationof the patient and family, and that an initial disclosure is theminimum requirement of informed consent/decisionmaking.

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)

  • F Guillemin et al.

    Cross-cultural adaptation of health related quality of life measures: literature review and proposed guidelines

    J Clin Epidemiol

    (1993)
  • KA Gerhart et al.

    Quality of life after spinal cord injury: knowledge and attitudes of emergency care providers

    Ann Emerg Care Med

    (1994)
  • IS Gilgoff

    End stage Duchenne patients: choosing between respirator and natural death

  • JR Bach

    Pulmonary rehabilitation considerations for Duchenne muscular dystrophy: the prolongation of life by respiratory muscle aids

    Crit Rev Phys Rehabil Med

    (1992)
  • G Alberion et al.

    Pulmonary care of Duchenne type of dystrophy

    NY State J Med

    (1973)
  • JF Curran et al.

    Ventilator management in Duchenne muscular dystrophy and post poliomyelitis syndrome: twelve years experience

    Arch Phys Med Rehabil

    (1989)
  • JR Bach

    Ventilator use by muscular dystrophy association patients

    Arch Phys Med Rehabil

    (1992)
  • E Makas

    The MIDS (Modified Issues in Disability Scale)

    (1985)
  • E Makas

    In the MIDSt: Modified Issues in Disability Scale testing

  • DA Dillman

    Mail and telephone surveys: the total design method

    (1978)
  • AJ Kuzel

    Sampling in qualitative inquiry

  • A Strauss et al.
  • E Etchells et al.

    Bioethics for clinicians: 1. Consent

    Can Med Assoc J

    (1996)
  • TL Beauchamp et al.
  • Cited by (88)

    • Children Dependent on Respiratory Technology

      2019, Kendig's Disorders of the Respiratory Tract in Children
    • Rehabilitation of the muscular dystrophies

      2013, Handbook of Clinical Neurology
      Citation 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.

    View all citing articles on Scopus

    Performed at the Institute of Medical Sciences, University of Toronto. Financial support was provided by the Ontario Respiratory Care SocietyFellowship.

    View full text