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Research article summary:
Threats to 'informed' advance directives for the severely physically challenged?
Abstract Extract:
The neuromuscular diseases, such as infantile spinal muscular atrophy, Duchennes muscular dystrophy, and amyotrophic lateral sclerosis, are widely considered to be terminal illnesses. However, as with many neuromuscular and neurologic diseases, morbidity ... (Full abstract text below) Published 2003Apr
in Journal: Arch Phys Med Rehabil
(Language : eng)
Full Pubmed Extract
This information was retrieved, real-time, on your behalf from the public area of the Pubmed website:
1. Arch Phys Med Rehabil.
2003 Apr;84(4 Suppl 2):S23-8
Threats to "informed" advance directives for the severely physically challenged?
Bach JR
Department of Physical Medicine and Rehabilitation, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, NJ 07103-2406, USA.
The neuromuscular diseases, such as infantile spinal muscular atrophy, Duchenne's muscular dystrophy, and amyotrophic lateral sclerosis, are widely considered to be terminal illnesses. However, as with many neuromuscular and neurologic diseases, morbidity and mortality are caused by dysfunction of inspiratory, expiratory, and bulbar musculature. This article will discuss how inspiratory and expiratory musculature can be supported by simple, noninvasive means that are rarely considered when, as with the general population, individuals with disabilities are counseled about advance directives. Failure to use noninvasive aids almost invariably results in respiratory failure, intubation, and tracheostomy or death. When noninvasive aids are available, invasive measures referred to in advance directives (eg, intubation) are often needed only temporarily. Yet, ill-informed patients are often advised to refuse intubation and die or to be intubated and left to decide whether to undergo tracheostomy for long-term ventilatory support. Further, despite severe disability, ventilator users with neuromuscular disease report normal life satisfaction. Health care professionals, on the other hand, tend to ignore the patient's life satisfaction and consider quality of life measures not designed for the disabled to justify withholding life-saving interventions. Advance directives, although sometimes appropriate for patients with irretractable pain and advanced cancer, are inappropriate for patients with severe disability because of muscle weakness, and virtually no patients are appropriately counseled about all therapeutic options.
PMID : 12692768 [PubMed - Indexed for MEDLINE]
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Full Author Information
| First Name | LastName | Initials |
| John R | Bach | JR |
Affiliation: Department of Physical Medicine and Rehabilitation, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, NJ 07103-2406, USA.
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MESH categories and related page links
This article was linked to the MESH categories shown on the left below. The links on the right are related Memletics pages.
Category links from this article:- Advance Directives
- Attitude to Health
- Decision Making
- Disabled Persons - psychology, rehabilitation
- Ethics, Medical
- Humans
- Informed Consent - standards
- Life Support Care - psychology
- Neuromuscular Diseases - mortality, psychology, rehabilitation
- Patient Advocacy
- Patient Education as Topic - standards
- Patient Selection
- Personal Health Services
- Personal Satisfaction
- Quality of Life
- Respiration, Artificial - methods
- Self-Help Devices - standards
- Terminal Care - psychology
- Withholding Treatment
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