Patient and caregiver communications and decisions
Citation Manager Formats
Make Comment
See Comments

This article requires a subscription to view the full text. If you have a subscription you may use the login form below to view the article. Access to this article can also be purchased.
Communication between neurologists and patients with amyotrophic lateral sclerosis (ALS), as well as with their family members, is an extremely challenging aspect of patient care. Patients with ALS often resent their neurologists, who must impart a diagnosis that is not only unwelcome but also psychologically and financially catastrophic for both patient and family. There is no "typical" ALS patient. Some patients are very sophisticated with respect to their life experiences and have survived many emotional and physical challenges. Others have led very sheltered lives and have developed minimal psychological coping skills. There are also vast differences in patients' religious and spiritual resources, familial and extrafamilial support systems, and socioeconomic status. Therefore, each step in the diagnosis and treatment of patients with ALS must be highly individualized on the basis of the patient's unique psychosocial profile.
Nevertheless, certain ethical considerations pertain to the management of patients with ALS, as with all patients. These include affirmation of the patient's autonomy, nonmalfeasance, and beneficence. Patients with ALS should be encouraged to participate actively in the decision-making process whenever possible, particularly in determining which diagnostic and treatment approaches they find neest ecoeptable. Every effort should be made to minimize any risk to the patient, and the optimal outcome that can be achieved should be sought, given the available options. With these caveats in mind, this review explores the key elements that should be considered in optimizing communication and caregiving in the management of patients with ALS.
Initial interview: Fundamental differences in physician versus patient perceptions.
Many potential misperceptions on the part of both the neurologist and the patient exist even before an actual face-to-face meeting takes place. Patients with ALS tend to regard the physician as powerful and omnipotent and to perceive themselves as powerless and vulnerable. Therefore, the physician's pronouncements are often viewed as absolute decrees rather than as well-considered clinical opinions. …
AAN Members
We have changed the login procedure to improve access between AAN.com and the Neurology journals. If you are experiencing issues, please log out of AAN.com and clear history and cookies. (For instructions by browser, please click the instruction pages below). After clearing, choose preferred Journal and select login for AAN Members. You will be redirected to a login page where you can log in with your AAN ID number and password. When you are returned to the Journal, your name should appear at the top right of the page.
AAN Non-Member Subscribers
Purchase access
For assistance, please contact:
AAN Members (800) 879-1960 or (612) 928-6000 (International)
Non-AAN Member subscribers (800) 638-3030 or (301) 223-2300 option 3, select 1 (international)
Sign Up
Information on how to subscribe to Neurology and Neurology: Clinical Practice can be found here
Purchase
Individual access to articles is available through the Add to Cart option on the article page. Access for 1 day (from the computer you are currently using) is US$ 39.00. Pay-per-view content is for the use of the payee only, and content may not be further distributed by print or electronic means. The payee may view, download, and/or print the article for his/her personal, scholarly, research, and educational use. Distributing copies (electronic or otherwise) of the article is not allowed.
Letters: Rapid online correspondence
REQUIREMENTS
You must ensure that your Disclosures have been updated within the previous six months. Please go to our Submission Site to add or update your Disclosure information.
Your co-authors must send a completed Publishing Agreement Form to Neurology Staff (not necessary for the lead/corresponding author as the form below will suffice) before you upload your comment.
If you are responding to a comment that was written about an article you originally authored:
You (and co-authors) do not need to fill out forms or check disclosures as author forms are still valid
and apply to letter.
Submission specifications:
- Submissions must be < 200 words with < 5 references. Reference 1 must be the article on which you are commenting.
- Submissions should not have more than 5 authors. (Exception: original author replies can include all original authors of the article)
- Submit only on articles published within 6 months of issue date.
- Do not be redundant. Read any comments already posted on the article prior to submission.
- Submitted comments are subject to editing and editor review prior to posting.
You May Also be Interested in
Dr. David E. Vaillancourt and Dr. Shannon Y. Chiu
► Watch
Related Articles
- No related articles found.
Alert Me
Recommended articles
-
Special Article
Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review)Report of the Quality Standards Subcommittee of the American Academy of NeurologyR. G. Miller, C. E. Jackson, E. J. Kasarskis et al.Neurology, October 12, 2009 -
Articles
ALS standard of care consensusRobert G. Miller, Robert Sufit, Hiroshi Mitsumoto et al.Neurology, April 01, 1997 -
Editorial
The yin and yang of gastrostomy in the management of ALSFriend or foe?Mamede de Carvalho, Clifton L. Gooch et al.Neurology, September 01, 2017 -
Article
Death with dignity in Washington patients with amyotrophic lateral sclerosisLeo H. Wang, Michael A. Elliott, Lily Jung Henson et al.Neurology, October 21, 2016