Up to 90% of adults living in any community are likely to have had or currently have experiences either as a person with a life - threatening illness, a family caregiver, or a bereaved loved one. Each of their experiences are unique yet may have some common themes that would be helpful for a community to understand as it determines what it can do to better meet the needs of their community. There are a number of approaches to collecting and understanding the experiences. Focus groups or questionnaires are both useful. Questionnaires to capture the individual experiences have been designed by Midwest Bioethics Center, Missoula Demonstration Project, and Supportive Care of the Dying: A Coalition for Compassionate Care as well as others. You are encouraged to review and use the questionnaires that best match your purpose. This "Yardstick" is offered as a way of understanding your community strengths and opportunities for improvement.

The tool allows you to determine how your community compares to national data and to determine possible actions to improve care for those within your community. Data may be gathered from Health Department Statistics, phone surveys of community agencies and / or group meetings with the providers of community services. Healthcare and Human Service organizations may already have much of the information you desire. Establishing an infrastructure that promotes excellent community end-of-life care is necessary to promote a cultural change. Excellent end of life care should be integrated into healthy community initiatives.

Community Yardstick and Infrastructure Assessment

Data Source	Item	Local Data	NationalData
Health Dept	Number of deaths per year
	Natural Causes / Illness
	Violence, injury
	Average Age at Death
Health Dept	Location of Deaths
	% at Home (include assisted living facilities)
	% in Hospitals
	% in Non acute Care Facility (include adult foster care homes)
	% of deceased without insurance
Random Interview	% Death occurred where person wished
Facility Survey	% of facilities with goals, objectives, and initiatives to improve care for those at the end-of-life.
	% of time death occurred in a special room designed to support dying patients and families
	% of paid and volunteer Pastoral Care staff with at least 2 units of CPE
	% of doctors and nurses have special training in palliative care (include hospice staff)
	% Nurses certified and / or members of specialty organization
	% of physicians certified and / or members of specialty organization
	% of physicians who have completed EPEC training
	Average LOS in Hospice/ Palliative Care 1998
	Percent with Hospice / Palliative Care LOS less than 7 days 1998
	Percent with Hospice / Palliative Care greater than 30 days 1998
	Average LOS in Hospice/ Palliative Care Year of most recent data
	% of patients /families that received other home care support
	When patients are transferred across settings, % of patients whose advance directives accompany them
Survey EMT	% of time EMT or other response teams know advance care plans prior to transfer to hospital
Insurers and Medicare	% of deceased without insurance coverage for Hospice / Palliative Care
	Average health insurance coverage for Hospice services in days of service and % of actual costs of service
	Average health insurance coverage for Palliative care services in days of service and % of actual costs of service
Random survey HR policies	% of Employers with specific programs for patient, family and bereaved support
	% of local employers with flexible work schedule programs to support ill person and caregivers, or bereaved family
	% of local employers with employee assistance / support groups for ill persons and / or caregivers
	% of local employers with policies that allow peer transfer of paid time to support ill person or caregiver
	% of local employers providing education about advance care planning and end-of-life care
Random survey Faith Communities	% of Faith Communities with specific programs for patient, family and bereaved support
	% of faith communities that offer structured bereavement support services
	% of faith communities that have systematic volunteer outreach to ill persons and caregivers
	% of faith communities with connections to parish nurse programs
	% of faith communities that provide advance care planning education
	% of faith community leaders with focused education in end-of-life care
	% of faith communities with active advocacy initiatives focused on end-of-life
Survey Funeral Providers	% of Funeral Service Providers with specific programs for family /bereaved support
	% of Funeral Service Providers providing advance care planning education
	% of Funeral Service Providers with bereavement support programs
Random Survey	What % of adults in the community have written advance care plans, (living wills, health care proxy, advance directives
Insurers Survey	% of insurers with programs to encourage advance care planning
Random Attorney Survey	% of attorneys who encourage and seek advance care planning
Pharmacy Board	Annual morphine use (mg / 100,000 population) 1998
	Annual morphine use (mg / 100,000 population) Year of most recent data
Random Survey / questionnaire / chart audit	% of patients or family reporting well controlled pain and symptoms (0 = no pain /symptoms and 10 = worst possible pain or symptoms)
	% mild pain (0-3) year of most recent data
	% moderate pain (4-6) year of most recent data
	% severe pain (7-10) year of most recent data
	% mild symptoms (0-3) year of most recent data
	% moderate symptoms (4-6) year of most recent data
	% severe symptoms (7-10) year of most recent data
School Survey	% schools with end-of-life and /or bereavement education integrated