A Healthier Future for West Virginia - Healthy People 2010

29 - WV - Specific Focus:

End of Life

Objectives | References

Background

Health care services are inclusive across a continuum of care from pre-birth to natural death. The consideration of end-of-life care is an important, but often neglected, part of this continuum. Improving end-of-life care is consistent with the purposes of Healthy People 2010. The goals of Healthy People 2010 are to (1) improve the quality of life and years of healthy living and (2) eliminate health disparities. All people are entitled to enhanced quality of life until the very moment of their death. Healthy dying is a natural part of healthy living. Also, the life and health of every West Virginian is affected by the death of a close friend or loved one. Adequate end-of-life care not only focuses on the needs of the patients, but also on the needs of family and friends. The literature documents the negative health effects of death and dying on survivors. West Virginia is one of the most rural states in the country, and a majority of West Virginians live at a considerable distance from health care services, including end-of-life care. Improving access to end-of-life services for West Virginians in rural areas addresses the second goal of eliminating health disparities.

West Virginians have recently identified a dissatisfaction with, and a desire to improve, the current provision of end-of-life care. A series of community dialogue meetings were held across the state in 1999 as part of the West Virginia Initiative to Improve End of Life Care funded by the Robert Wood Johnson Foundation. West Virginia is among only 17 states to receive such funding. During these community dialogue meetings, West Virginians identified the need for greater attention to advanced care planning, including where death occurs, greater access to palliative care and hospice services, and greater attention to pain management at the end of life. The Initiative to Improve End of Life Care also surveyed pharmacists, physicians, nurses, and social workers across the state. Most health care professionals rated end-of-life care in West Virginia as only fair.

Several challenges to improving end- of-life care are pronounced in West Virginia. They include a large proportion of elderly living in rural areas and a higher percentage of deaths from chronic disease than in other states.

West Virginia has the highest median age of all states at 37.7 years and ranks fifth in the nation in the percent of the population over the age of 65. The state is experiencing unprecedented growth in its aging population. According to the 1990 U.S. Census, the aging population represented 15% (268,897) of the total population. By the year 2020, this number is expected to reach 345,000, a 28% increase. Of the 55 counties in West Virginia, only nine counties have an elderly population below the national average of 12%.

West Virginia is the second most rural state in the country, behind Vermont, with 63% of West Virginians living in rural areas. Most of the state's elderly reside in rural areas, even though the ratio of urban to rural elderly in West Virginia does increase with age. For the 65+ age group the ratio is .78; for the 75+ group the ratio is .82; and for the 85+ group the ratio is .91. Referrals to hospice are low, and the reimbursement to hospices for care of patients in rural areas is well below the costs. The reality is that barriers to accessing health care services and resources such as hospitals, hospices, and nursing homes confront many older adults.

The percentage of deaths from chronic diseases in West Virginia is considerably higher than the national average. West Virginia currently ranks first in the United States in mortality rate from heart disease and number three for mortality rates for cancer and diabetes.

National data have indicated that people prefer to die in the comfort of their own homes, surrounded by loved ones. In West Virginia, in 1997, out of a total of 20,872 deaths, 10,243 people died in a hospital and 4,917 died at home . The percent of individuals dying in their homes with hospice services, 11.3%, remains 35% below the national average of 17%. Only 2% of nursing home residents received hospice care in 1997. Moreover, most West Virginians die in a hospital or nursing home, without choosing their place of death.

In conclusion, the Healthy People 2010 project is an important mechanism for meeting West Virginians' desires and needs concerning end-of-life care. The following four objectives have been formulated to help improve end-of-life care in West Virginia by the year 2010.

The Objectives

FLAGSHIP OBJECTIVE
OBJECTIVE 29.1. Increase the percentage of dying persons receiving hospice care to 25%. (Baseline: 13% in 1997)

Data Source: West Virginia Health Care Authority (WVHCA) Annual Survey

OBJECTIVE 29.2. Increase the percentage of persons dying in their homes to 35%. (Baseline: 24% in 1997)

Data Source: West Virginia Bureau for Public Health (WVBPH), Office of Epidemiology and Health Promotion (OEHP), Health Statistics Center (HSC)

OBJECTIVE 29.3 Increase the percentage of persons receiving hospice care while dying in a nursing home to 10%. (Baseline: 2% in 1997)

Data Source: WVHCA

OBJECTIVE 29.4. Increase the percentage of persons who have talked with their families and doctors about their preference for end-of-life care to 75% and increase the percentage of persons who have completed written advance directives to 50%. (Baseline: in 1999/2000, 60% reported talking with their family or close friend about the medical treatment they would/ would not want at life's end; 34% had completed written advance directives (12% reported having a living will; 3% reported having a medical power of attorney; 19% had both)

Data Sources: Baseline data collected by a 1999/2000 Ryan, McGinn, Samples research survey; future progress to be tracked by four questions on the Behavioral Risk Factor Surveillance System survey in 2004 and 2008.

The following questions will be included in the BRFSS survey to address end-of-life issues:

1. Have you ever discussed with your family how you would want to be treated if your were dying?
2. Have you ever discussed with your doctor how you would want to be treated if you were dying?
3. Have you completed a written advance directive such as a living will or medical power of attorney that says who you would want to make medical decisions for you if you could not make them for yourself?
   Living will only;
   Medical power of attorney only;
   Both a living will and a medical power of attorney;
   Neither; or,
   Never heard of either
4. How would you respond to the following statement? It is important to talk with my family and doctor about how I want to be treated at the end of life:
   Strongly agree
   Agree;
   Neutral;
   Disagree; or,
   Strongly disagree

Meeting the Objectives

Health Promotion Channels for Achieving Objectives:

• Worksites
• Schools
• Public Health Programs
• Networks
• Health Care System
• Higher Education

The following are the two organizations that will be leading the initiatives to reach the 2010 objectives:

• Center for Health Ethics and Law, Robert C. Byrd Health Sciences Center, West Virginia University (WVU)
• Center for Health Services and Outcomes Research, Camcare Health Education and Research Institute
• The Center for Health Ethics and Law has been the lead organization for the West Virginia Initiative to Improve End-of-Life Care funded by the Robert Wood Johnson Foundation, the West Virginia Humanities Council, the Claude Worthington Benedum Foundation, and the Project on Death in America through July 2002. The Center for Health Services and Outcomes Research of the Camcare Health Education and Research Institute has been the lead data collection and analysis entity for the Initiative.

The Initiative is a statewide, multidisciplinary, comprehensive, and public participatory effort to improve all aspects of end-of-life care for the citizens of West Virginia. The Initiative consists of a 20-member organizational coalition that includes:

The Bureau of Senior Services, West Virginia Department of Health and Human Resources

• Guardianship Commission
• WV Boards of Medicine and Pharmacy
• WV State Medical Association
• WV State Bar; Hospice Council of WV
• WV Health Care Association
• WV Hospital Association
• WV Council of Home Health Agencies
• WV Network of Ethics Committees
• WV Cancer Pain Initiative
• WV Humanities Council
• WV Rural Health Education Partnership
• WV Chapter of NASW
• Center for Health Ethics and Law
• WVU Schools of Medicine, Nursing, and Pharmacy
• WV School of Osteopathic Medicine
• Marshall University School of Medicine
• Camcare Health Education and Research Institute
• WVUH Center for Pain Management
• Professional Anesthesia Services, Inc.
• Northern West Virginia Pain Management Center
• Catholic Diocese of Wheeling-Charleston
• the Synod of the WV-Western Maryland Evangelical Lutheran Church in America
• WV Council of Churches
• WVU Departments of Public Administration and Social Work; AARP
• Legal Aid Society Long-term Care Ombudsman Program
• and the South Central WV AIDS Network

The West Virginia Initiative to Improve End-of-Life Care has utilized seven task forces to establish the mechanisms to meet the four 2010 objectives. The seven task forces include Funding and Finance, Professional Education, Palliative Care Delivery Systems, Cultural and Spiritual, Policy, Community Visioning, and Survey and Needs Assessment. Various programs have already been put in place that will contribute to meeting the 2010 objectives. Action steps include:

Education: various programs to educate health care professionals and the public about end-of-life care including a media campaign.

Financing: establish more complete and efficient financial coverage for end-of-life care. Change the Medicaid disincentive to bringing hospice care into long-term care facilities and develop a model hospice benefit for managed care.

Palliative Care Delivery Systems: facilitate the development of palliative care teams in hospitals, long-term care facilities, and communities.

Policy: educate the state legislature about pertinent policy issues related to end-of-life care, including end-of-life care decision-making and pain management.
Public Discussion: foster a statewide dialogue around the issues of death and dying and increase the comfort of citizens in addressing end-of-life issues.

Statewide Resources: develop a toll-free information number (1-877-209-8086) and website (www.wvinitiative.org) that serves as a resource for patients, families, and health care professionals; monitor and share the latest developments in end-of-life care.

The Initiative's coalition members are dedicated to the continued improvement of end-of-life care in West Virginia, and the Healthy People 2010 objectives will serve as a target for that effort. The WV Center for Health Ethics and Law and the WV Initiative have proposed to the WV Legislature that a WV Center for Palliative Care and Hospice be established as a statewide resource to meet the end-of-life objectives of Healthy People 2010 and the 2000-2002 State Health Plan. This Center will help ensure a long-range approach to meeting the objectives and serving the health care professionals and citizens of West Virginia.

Work Group Members

Jacqueline J. Glover, PhD, Work Group Co-Leader, Associate Director, Center for Health Ethics and Law, WVU
Mary Emmett, PhD, CHE, Work Group Co-Leader, Director and Senior Policy Analyst, Center for Health Services and Outcomes Research, Camcare Health Education and Research Institute
Amy Bloom, BS, MPH student at WVU
Stephen C. Hines, PhD, formerly of the Department of Communication Studies, WVU
James Keresztury, MSW, MBA, Project Manager, WV Initiative to Improve End-of-Life Care, Center for Health Ethics and Law, WVU
Alvin H. Moss, MD, Director, WV Initiative to Improve End-of-Life Care, Center for Health Ethics and Law, WVU
Sue Warren, MD, Kanawha Hospice Care, Inc. and Marshall University School of Medicine

References/Resources

Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanual L. "Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients." The New England Journal of Medicine 341, no. 13 (1999):956-963.

Institute of Medicine, Committee on Care at the End of Life. Field MJ and Cassell CK, eds. Approaching Death: Improving Care at the End of Life. Washington D.C.: National Academy Press, 1997.

National Hospice Association, Arlington, VA.
Tilden VP, Tolle SW, Garland MJ, Nelson CA. "Decisions about life-sustaining treatment." Archives of Internal Medicine 155 (1995): 633-638.

Tolle SW. "Care of the dying: clinical and financial lessons from the Oregon experience." Annals of Internal Medicine 128, no. 7 (1998):567-568.

West Virginia Bureau for Public Health. West Virginia Vital Statistics 1998. Charleston, WV: West Virginia Department of Health and Human Resources, January 2000.

West Virginia Health Care Authority. 2000-2002 State Health Plan. Charleston, WV: West Virginia Health Care Authority, January 2000.

West Virginia Health Care Authority. Unpublished data. Charleston, WV: West Virginia Health Care Authority, 1999.

For More Information

WVU Center for Health, Ethics, and Law
1197 Health Sciences N.
P.O. Box 9022
Morgantown, WV 26506
Phone: (304) 293-1121

This page was last updated June 27, 2001.
For additional information about HP2010, contact Chuck Thayer at (304) 558-0644 or Chuck.E.Thayer@wv.gov