Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 12.8 The Agitator's Guide

To keep efforts in perspective and to give you some thoughts on what you can do today, "The Agitator's Guide: Twelve Steps to Get Your Community Talking about Dying" by Americans for Better Care of the Dying is reprinted here.

  1. Call your local paper's obituary writer. Ask him or her to say something about how a person lived during the last years or months - what did he or she do? What did the family do?
  2. Write a letter to your U.S. representatives and senators. Urge them to have the Health Care Financing Administration sponsor demonstration programs in end-of-life care.
  3. Call or write your local chamber of commerce. And talk to your employer, too, about ways to support family caregivers and protect their jobs during leave.
  4. Talk to local churches or civic and volunteer groups. Together you can support those who are dying and their families through visits, transportation, meals, and even prayer groups.
  5. Write letters to your local media. When articles or programs run about aging or death and dying, note your appreciation, point to gaps in coverage, and counter misleading anecdotes.
  6. Talk to your doctors about advance care planning and pain control.
  7. Ask for a report card. If your community has a comparison list of health plans, press the group to include something about caring for people who are very sick and likely to die. Do plans cover hospice? What do families say about symptom control? What about continuity of and access to care?
  8. Ask local media to develop a series on how serious and eventually fatal illness affects people in your community.
  9. Push your local health care system - even if it's only one doctor's office-to get involved in quality improvement efforts.
  10. Write to your favorite television or radio show. Ask them to include stories about - or even just mention - people who are facing serious illness and death, and how they and their loved ones manage.
  11. Keep pace with what's going on in the field. Americans for Better Care of the Dying advocates improved care of the dying and public policy that promotes such care. Our monthly print and electronic newsletter, The Exchange, reports on the field.
  12. Read Handbook for Mortals: Guidance for People Facing Serious Illness. Donate copies to local churches, hospitals, or hospices - or give them to friends who need guidance and support.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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