Ethical issues in the long-term management of progressive degenerative neuromuscular diseases

Laszlo T. Vaszar, Ann B. Weinacker, Noreen R. Henig, Thomas A. Raffin

Research output: Contribution to journalReview articlepeer-review

5 Scopus citations


Degenerative neuromuscular diseases are characterized by a gradual decline of motor function leading to respiratory collapse, while the patients retain consciousness and cognition. The ethical challenges of caring for such patients result from the need to implement various combinations of initiating, withholding, and withdrawing life-sustaining interventions. In caring for this population of patients physicians should adhere to the ethical principles of autonomy, beneficence, nonmaleficence, and justice. A central goal of care is to avoid a decisional impasse by anticipating end-of-life issues in discussion with patients and families. The evolution of these diseases is usually slow enough to allow ample patient education, and thus physicians should foster early and frank discussions and encourage the patient to set up advance directives, designate a durable power of attorney for health care, and plan end-of-life care. Competent patients have the right to accept or refuse life-sustaining therapies, and such requests should be honored. In delivering palliative care, adequate sedation and analgesia must be provided when needed. If a decision to withhold or withdraw life support is made, patient comfort and dignity are the ultimate objectives.

Original languageEnglish (US)
Pages (from-to)307-314
Number of pages8
JournalSeminars in Respiratory and Critical Care Medicine
Issue number3
StatePublished - Jan 1 2002


  • End-of-life care
  • Ethics
  • Neuromuscular diseases
  • Palliative care

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine
  • Critical Care and Intensive Care Medicine


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