End-of-Life Care for Hawaii’s Ohana

Funding Agency: U.S. Administration on Aging, National Family Caregiver Demonstration Project

Project Dates: 2002-2004

This project explored the impact of group-targeted messages and individually tailored support on end-of-life planning by family caregivers of elders receiving long-term care (LTC) services. Five booklets have been developed:

  • Advance Care Planning: Making Choices Known
  • Planning Ahead: Funeral and Memorial Services
  • Preparing to Say Good-bye: Care for the Dying
  • When Death Occurs – What to Do When a Loved One Dies
  • Help for the Bereaved: Surviving and Adapting to Change

The Complete Life Series is now available online:

Making Choices Known Cover

Booklet 1: Advance Care Planning – Making Choices Known

Funeral and Memorial Services Cover

Booklet 2: Planning Ahead – Funeral and Memorial Services

Care for the Dying Cover

Booklet 3: Preparing to Say Good-Bye – Care for the Dying

What to Do When a Loved One Dies

Booklet 4: When Death Occurs – What to Do When a Loved One Dies

The Healing Journey Cover

Booklet 5: Help for the Bereaved – The Healing Journey

Advanced Directives Form

Because research shows that print messages alone have limited success in changing end-of-life planning behaviors, caregivers also are offered a choice of individually tailored supplemental support-group training, telephone counseling, or assistance from service providers.

Partners in this research include:

  • Castle Medical Center Caregivers Group
  • Department of Health, Case Management Services, Kona
  • Honolulu Gerontology Program
  • Honolulu Meals on Wheels
  • Hospice of Kona
  • Kokua Kalihi Valley Elderly Services
  • Kona Adult Day Center
  • Kona Community Hospital
  • Life Care Center at Kona
  • Maluhia Nursing Home
  • Nursing Home Without Walls
  • Project Dana
  • St. Francis Dialysis Center, West HawaiÊ»i
  • West Hawaii Home Health Services, Inc.

The project will: identify the stage of caregivers of elders receiving LTC; provide 600 caregivers with appropriate message booklets and their choice of supplemental support; track changes in end-of-life knowledge, attitudes, and behaviors (KAB); document culturally linked barriers to end-of-life planning and strategies to address them; and compare costs of each approach. Expected KAB outcomes include: increased knowledge of end-of-life issues and resources; improved attitudes toward hospice, planning for death, and dying at home; and completion and communication of advance directives (AD) and other end-of-life planning documents.