The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

End of Life Considerations

Discussing wishes about end-of-life is difficult for most people. However, tackling these topics proactively, at a moment when there is no crisis or urgency, allows time to think, reflect, ask questions and ultimately arrive at an informed decision. End-of-life discussions generally encompass resuscitation wishes, thoughts regarding artificial feeding and overall goals of care, including any limitations in the aggressiveness of care, particularly in the setting of serious or terminal illness. 

Prior to any discussion of this sort, there needs to be proper identification of the health care decision-maker. Some individuals make decisions for themselves, whereas others will have legal guardians. It is extremely important to clarify this information and periodically review and update it. 

In the setting of Alzheimer’s disease, these discussions are particularly important, as the disease is eventually terminal. Having a proactive discussion before dementia is at an advanced stage is preferred, minimalizing the risk of an unexpected crisis. Hospice is an option that can be very beneficial to adults with advanced Alzheimer’s disease if in line with the overall goals of care. 

In general, the following tips can help individuals and families to prepare themselves ahead of time to deal with difficult changes:

  • Identify who the medical decision-maker is; the center person, a family member, a court-appointed guardian?
  • Engage the decision-maker proactively regarding end-of-life wishes. Have a discussion with the primary care doctor to help clarify any unfamiliar terms and to formally document any wishes or goals.
  • Tackle the tough discussions at a time when there is no crisis, when decisions can be made in a relaxed fashion so that all aspects can be properly considered and explored.

 


EXTERNAL RESOURCES

BOOKS/ARTICLES

  • Advanced Directives.  Adult Down Syndrome Clinic. Can be found at: www.advocatehealth.com/luth/documents/downsyndrome/Advance_directives.pdf
  • End of Life Care: Bridging Disability and Aging with Person Centered Care. Ed. Bill Gaventa and David Coulter. Binghamton, NY: Haworth Press. (2005)  
  • People Planning Ahead: Communicating Healthcare and End-of-Life Wishes. Creaney Kingsbury, L. A. Washington, DC: American Association on Intellectual and Developmental Disabilities. (2009)
  • Thinking Ahead: My Way, My Choice, My Life at the End.  California Department of Developmental Servces. Can be found at: coalitionccc.org/thinking-ahead.php
  • Buddy Walk
  • NDSS Yourway
  • My Great Story