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“I Didn’t Know He Was Dying”

Missed Opportunities for Making End-of-Life Care Decisions for Older Family Members

Izumi, Shigeko (Seiko) PhD, RN; Son, Catherine Van PhD, RN, ANEF

Journal of Hospice & Palliative Nursing: February 2016 - Volume 18 - Issue 1 - p 74–81
doi: 10.1097/NJH.0000000000000215
Feature Articles

Research is limited on end-of-life care decision-making for older adults with chronic conditions whose end-of-life trajectory is difficult to predict because of their complex and frail condition. Semistructured interviews were conducted with family members of 22 deceased older adults to explore their experiences with end-of-life decision-making with/for their loved ones. Participants did not identify a specific time they made an end-of-life care decision as they did not know the older adult was at the end of life, health care providers did not ask them to make a decision, or they had to make forced decisions, and subsequently they experienced regret about the end-of-life care their family member received. End-of-life care decisions were dependent on the awareness of approaching death by participants, their loved ones, and health care providers. Health care providers being aware of the possibility of approaching death and assisting family members to make decisions that would honor the older adult’s preference by explaining possible care options and what each care options would mean to them are key to providing quality end-of-life care for these individuals.

Shigeko (Seiko) Izumi, PhD, RN, is assistant professor, School of Nursing, Oregon Health & Science University, Portland.

Catherine Van Son, PhD, RN, ANEF, is associate professor, College of Nursing, Washington State University, Vancouver.

Address correspondence to Shigeko (Seiko) Izumi, PhD, RN, School of Nursing, Oregon Health & Science University, 3455 SW US Veterans Hospital Rd, SN-6S Portland, OR 97239 (

This study was funded by the American Nurses Foundation and the Hospice and Palliative Nurses Foundation.

The authors declare no conflicts of interest.

© 2016 by The Hospice and Palliative Nurses Association.