Maryland Attorney General and Johns Hopkins Study Barriers to Effective End-of-Life Care
In June 1997, the Johns Hopkins University Bioethics Institute, Baltimore, and the Maryland attorney general's office formed a partnership to investigate ways to improve End-of-Life care and eliminate the medical and legal barriers to effective palliative care for terminally ill patients in Maryland.
- Project staff engaged in coalition-building activities, interviewed 500600 individuals involved in End-of-Life care about the problems they encountered, and surveyed 1,890 physicians, nurses, and social workers from across the state who were involved in End-of-Life care.
- Project staff also helped create the Attorney General's Advisory Board with representatives from consumer and health care groups. The Board met four times throughout the grant period to review the preliminary needs assessment, evaluate potential policy interventions, and plan for the future.
- A survey of physicians, nurses and social workers that was developed and undertaken provided additional information on the problems of End-of-Life care.
As this planning project was drawing to a close, the Robert Wood Johnson Foundation (RWJF) initiated a national program, the Community-State Partnerships to Improve End-of-Life Care, that provides support for states that are in the process of exploring approaches to improving both the policies that govern end-of-life care and communication on end-of-life issues with the public.
RWJF developed the national program based in part on the experience with this project.
RWJF supported the project with a grant of $25,509.
In June 1997, the Johns Hopkins University Bioethics Institute and the Maryland attorney general's office announced the formation of a partnership to investigate ways to improve End-of-Life care and eliminate the medical and legal barriers to effective palliative care for terminally ill patients in Maryland.
According to Maryland attorney general J. Joseph Curran Jr., "Aided by the scholarship, clear thinking, and commitment to the public interest that characterizes the work of the institute, we look forward to establishing a model for assessing the impact of the law on this crucial area of health care and devising reforms that will bring real benefits to patients and their loved ones."
The institute was established in 1995 as a university-wide endeavor to bring the moral dimensions of medical care, health policy, and the biological, behavioral, and social sciences to the forefront of scholarship and practice. The institute is designed to provide educational opportunities for students throughout the university and to provide an intellectual home for university faculty whose research advances and engages questions of bioethics.
This project, funded by the Robert Wood Johnson Foundation (RWJF) was called "Planning Project on State Initiatives for Palliative Care" in Maryland. Its objective was to develop a preliminary understanding of the problems involved in the care of the dying in Maryland and to identify state policy initiatives that would complement and facilitate efforts in the health care system to improve the care of the dying.
The project was also led by Jack Schwartz of the Maryland attorney general's office. The staff focused on three activities: coalition building, a preliminary needs assessment, and a preliminary feasibility assessment.
Each of the three areas of endeavor that were part of this planning effort yielded results:
- Five hundred to 600 people were interviewed in person or by phone about problems in providing care for the dying, and special meetings were held with professional groups. Representatives were from key groups and included the Maryland Nurses Association, the Maryland Hospice Association, the Maryland Healthcare Ethics Committee Network, Deputy Secretaries of Health and Mental Hygiene, Maryland legislators, and area hospital and nursing home health professional staff. These interviews a so helped publicize the initiative and build relationships among individuals and organizations. Meetings were held with professional groups such as health care lawyers from the Maryland Bar Associations and area hospitals, as well as nursing home professionals.
- An Attorney General's Advisory Board was formed and met four times throughout the grant period to review the preliminary needs assessment, evaluate potential policy interventions, and plan for the future. The final meeting was a quasi-public conference to which Advisory Board members and chairs of ethics committees throughout the state were encouraged to invite individuals from their communities who were interested in End-of-Life care issues. That November 23, 1998, discussion about the Maryland effort and the broader context of other states' efforts was aired on a local television station.
- A survey of physicians, nurses and social workers was developed and undertaken provided additional information on the problems of End-of-Life care. While not originally planned as part of the needs assessment, the co-directors decided a survey would be helpful to the planning process. They developed a survey instrument with a special research advisory group from Johns Hopkins University. The survey contained questions about respondents' experience with and understanding of End-of-Life care, legal concerns of health care providers during End-of-Life care, pain management at end of life, transfer of dying patients to hospitals, advance directives, and ethics committees. Surveys were mailed to every member of the Medical and Chirurgical Faculty of Maryland (the state medical society), the Maryland Nurses Association, and the Maryland Chapter of the National Association of Social Workers. Response rates varied: 970 of the 1,850 nurses surveyed responded (52 percent); 816 of the 4,484 physicians surveyed responded (18 percent); and 104 of the 180 social workers surveyed responded (58 percent). The key findings from the survey were:
- Proper pain management was considered the most significant problem by 42 percent of the respondents, and communication between physician and patient by 13 percent of respondents. When asked to identify the three most significant problems, 63 percent identified proper pain management, 39 percent identified communication between physician and patient, 35 percent identified psychological problems of patients, 32 percent identified differences among family members regarding treatment decisions, and 30 percent identified communication between physician and family members.
- Legal concerns such as breaking laws, risk of lawsuit, and professional censure were very important for 35 percent of the respondents and somewhat important for 34 percent of the respondents.
- Some 36 percent of the respondents stated that their pain management practices had often or sometimes been influenced by legal concerns; another 31 percent responded that their pain management practices had never been influenced by legal concerns. There was a difference in response by profession: physicians were more likely than other respondents to report never having been influenced by legal concerns.
- Most respondents (68 percent) believed that nursing home residents who were dying were transferred to hospitals too frequently. Some when offered five possible reasons for this, 71 percent believed it was because clinical skills in nursing homes may not be adequate to determine whether transfer and acute interventions are appropriate, 70 percent believed that advance directives do not clearly state patients' preferences regarding treatment and hospitalization, and 61 percent believed that nursing homes wish to avoid having patients die in the nursing home.
- A preliminary feasibility assessment identified five projects as potential initial interventions. In consultation with the Johns Hopkins Medical School and the University of Maryland as we as a number of health policy leaders, the Advisory Board reviewed the survey findings and a list of suggestions developed by a subcommittee of the Advisory Board for possible legal reforms or educational efforts by regulatory agencies or the attorney general's office. Five projects were identified for initial interventions:
- studies related to care planning and intensity of interventions in nursing homes
- a preliminary review of managed care organizations' policies related to End-of-Life care
- decisions about End-of-Life care in guardianship cases
- provider education
- a variety of efforts aimed at public engagement, including regional town meetings.
Articles describing the partnership between the institute and the attorney general's office appeared in a number of newspapers, including the Washington Post and the Baltimore Sun. The fourth and final Advisory Board meeting was a quasi-public meeting that was aired on a local television station. Institute staff are currently working on an article that summarizes the survey findings, and they intend to submit it for publication to a public health journal.
AFTER THE GRANT
As this planning project was drawing, to a close, RWJF initiated a national program, the Community States Partnerships to Improve End-of-Life Care, that provides support for states that are in the process of exploring approaches to improving both the policies that govern End-of-Life care and communication on End-of-Life issues with the public. See Grant Results on the program.
A subcommittee of the attorney general's Advisory Board worked with staff at the Hopkins Institute to draft a statewide plan of action that was proposed for funding under this program. The proposal went through the RWJF's regular national program review process and was not funded as a project of the new program.
Nevertheless, the Attorney General's Advisory Board continued to meet, develop new ideas for policy change, and focus on ways to further involve the community through town meetings and other forums for public participation. Other interventions that are being considered as a result of this planning effort include provider education on palliative care and development of a provider resource guide that contains information on End-of-Life resources for clinicians.
GRANT DETAILS & CONTACT INFORMATION
Planning for a State-Based Initiative to Improve Care at the End of Life
The Johns Hopkins University School of Hygiene and Public Health (Baltimore, MD)
Dates: June 1997 to November 1998
Ruth Gaare, J.D., M.P.H.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Press Kits and News Releases
A news release, "Hopkins Bioethics Institute Awarded Grant to Support State's 'Life of the Dying Project'" was mailed on June 10, 1997, from the Johns Hopkins Medical Institutions' Office of Communications and Public Affairs to about 200 newspapers and radio and television stations.
"Project to Probe Md. Care of Dying," in The Baltimore Sun, June 12, 1997.
"Md. Seeks to Alleviate Unnecessary Pain in Dying," in The Washington Post, June 20, 1997.
"Hopkins and State Team up on Bioethics," in The Gazette, June 23, 1997.
"State, Hopkins to Examine Terminal Care," in The Baltimore Sun, June 27, 1997.
"Fear Not Death, But Dying," in The Baltimore Sun, July 6, 1997.
"Physicians' Help Sought in Improving End-of-Life Care in Maryland," in The Med-Chi Physician, December 1997.
Report prepared by: Mike Jackson
Reviewed by: Timothy F. Murray
Reviewed by: Molly McKaughan
Program Officer: Rosemary Gibson