Medical Decisions Made by Surrogates for Persons with Advanced Dementia Within Weeks or Months of Death

Abstract

Background: Surrogates make all medical decisions for persons with advanced dementia. This study describes the types of medical decisions that surrogates faced prior to the person's death and their perceived difficulty and satisfaction with those decisions. Methods: Seventy-six surrogates of nursing home residents meeting hospice criteria for dementia were followed longitudinally and interviewed following the death of the person with dementia. Results: The most common decisions made were related to transfer to hospital, diagnostic testing, and placement of a feeding tube. Surrogates perceived decisions to not treat to be more difficult than decisions to treat. Conclusions: Surrogates frequently are faced with making medical decisions for persons with advanced dementia near the end of life. Clinicians can help surrogates by acknowledging the difficulty of making decisions to not treat.

Keywords:

• dementia
• end-of-life care
• surrogate decision making

Acknowledgments

Dr. Peter Rabins has provided expert testimony for Janssen Pharmaceutica.

Notes

^aExcludes pneumonia.

^bSurrogates who did not know whether they made the decision: respirator/ventilator (n = 2), feeding tube (n = 1), resuscitate (n = 1), surgery (n = 1).

^aAbbreviations: NH nursing home, DK don't know, ND not difficult, S/V D somewhat or very difficult, N/S S not or somewhat satisfied, and VS very satisfied; dx, diagnosis; tx, therapy.

^bSurrogates who did not know if they made the decision: respirator/ventilator (n = 2), feeding tube (n = 1), resuscitate (n = 1), surgery (n = 1).

^cExcludes pneumonia.