Sanford School of Medicine LifeCircle South Dakota

2004 dying to know survey information

Dying to Know logo

funding source:
Sioux Falls Area Community Foundation

project researchers:
Susan L. Schrader, PhD (Project Coordinator), Margot L. Nelson, PhD, and LuAnn M. Eidsness, MD.

research question:
What are Sioux Falls residents’ knowledge and attitudes about end of life?

methodology:
The Dying to Know [D2K] questionnaire is a replication (used with permission) of a tool created in Missoula, Montana (Missoula Demonstration Project or Life’s End Institute, with current archives at Duke University), and used in places like North Carolina, Nebraska, and Michigan.  In August 2004, 5,000 randomly selected households received the mail questionnaire, with a return rate of about  21% (N=1,042).  Data were entered in the computer using SPSS software, and analysis was conducted by an interdisciplinary team.

sample profile

Age  
Under 35
20%
353-64 60%
65-96 20%
   
Sex  
Male 44%
   
Self-rated health as...
 
"Excellent" 21%
"Very good/Good"
65%
"Fair/Poor" 14%

Household member with serious /chronic illness 19%

Experienced a death of someone close in last 5 years 70%

Covered by health insurance 94%

findings:
Key findings from “Dying to Know” are presented here.  For more information, contact the researchers listed above.
  • 89% of respondents are "very comfortable" or "somewhat comfortable" talking about death.
  • 69% indicated that "not being able to communicate their wishes to family / friends” would be worse than death.
  • 61% want to die at home, yet national statistics suggest that only about 25% of Americans do so.
  • Only 5% have discussed their wishes for end-of-life care with their primary physician, while 43% identified their physician as one who should initiate end-of-life conversations.
  • Only 4% have discussed their wishes for end-of-life care with their clergy, while 37% identified their clergy as one who should initiate end-of-life conversations.
  • 93% said it was "very important" for their doctor to "provide honest answers" when dealing with their dying.  Three-fourths said they would trust their doctor to provide information on end-of-life issues.
  • 74% said it was "very important" to complete a will, yet only half have.
  • 70% did not want artificial nutrition, 61% rejected artificial hydration when asked about end-of-life treatment protocols. 63% said it was "very important" to be off machines extending life when dealing with their own dying.
  • 25% knew that Medicare pays for hospice care.  Half knew nothing or a little bit about hospice care.  Among those who knew of hospice care, 67% would want hospice are at end of life, preferably at home.