NEWS RELEASE

For January 9, 2002

Report concludes that terminal patients need more information about health care options, improved access to hospice and supportive care.

     A variety of factors are working to diminish the quality of health care that people receive during the last days of life, according to a new report.

     Among the issues cited in report are lack of access to hospice services and supportive care for many state residents, lack of information about the kinds of services that might help dying patients, and lack of appropriate training and treatment guidelines for health care providers.

     In particular, the report's authors say that getting the appropriate kind of care can be a problem for dying children, for residents of rural areas, and for members of Minnesota's increasingly diverse immigrant and minority communities.

     And regardless of who they are or where they live, many people simply aren't familiar with the concept of hospice and supportive care for the dying, and they may simply not be aware that such services are available in their communities.

     The report was prepared by the Minnesota Commission on End of Life Care, a joint project of the Minnesota Department of Health (MDH) and a group of major health care provider organizations, the Minnesota Partnership to Improve End of Life Care.  Members of the Minnesota Partnership include Allina Health Systems, Fairview Health Services, Blue Cross/Blue Shield of Minnesota, and HealthPartners.

     The Commission - and other activities of the Minnesota Partnership - have been supported by a grant from the Robert Wood Johnson Foundation.

     In addition to the major sponsoring organizations, the Commission membership also included other health care provider groups, other state agencies, professional associations, education and advocacy groups, the faith community, the state legislature and the University of Minnesota.  Especially critical was the participation of the Minnesota Department of Human Services, which is the leading purchaser of health care services in the state.

     The Commission was established at least partly in response to an apparent discrepancy between the kind of care people say they would like to get during the last days of life - and the kind of care most people actually get.

     "When asked, most people say they would prefer to spend their last days being cared for in their own homes," said Minnesota Health Commissioner Jan Malcolm, who co-chaired the Commission.  "But that assumes that appropriate support services are going to be available in the community.  And right now, three out of four Minnesotans currently die in a hospital, a nursing home or some other institutional setting."

     Among its major accomplishments, the Commission developed a set of five Guiding Principles designed to serve as a framework for health care professionals in providing end of life care.

     "We feel that the Guiding Principles fill a crucial need, by establishing a set of basic standards for high-quality end of life care," said Dr. Barry Baines, who represented the Minnesota Partnership as co-chair of the Commission.

     According to the Guiding Principles, health care providers need to:

• Discuss treatment options with patients, and respect their preferences

• Make every reasonable effort to relieve pain and other undesirable symptoms

• Identify and address emotional and spiritual suffering in terminal patients

• Provide appropriate and realistic information about the course of a patient's illness

• Acknowledge the need to grieve, on the part of family members and others close to the patient, in their own way and according to their own cultural traditions

     In addition to the Guiding Principles, the Commission also offered a number of specific recommendations for increasing awareness of end of life issues - and providing greater access to appropriate supportive services for dying patients.  Those recommendations included:

• Development of a resource center for physicians and families who are caring for dying children.

• Development of informational materials, a cultural assessment tool, and interpreter services for health care providers who serve Minnesota's immigrant and minority communities.

• Efforts to educate rural residents and health care providers about hospice and palliative care services; to increase awareness of those services that are already available in rural communities; and to strengthen the hospice infrastructure in rural Minnesota.

• A variety of educational activities - including development of undergraduate and graduate curricula on end of life issues; efforts to encourage the training and certification of more physicians and nurses in hospice and palliative care; and broader efforts to educate the public about end of life concerns.

• Development of a consistent, streamlined vocabulary for crafting the "do not resuscitate" orders issued by physicians to emergency medical personnel.  Without clear orders, EMS professionals can find themselves in a position where they are legally obliged to use CPR and similar measures - even though it may be against the patient's wishes, and may cause further suffering.

• Development of better procedures for identifying "adult orphans" - people who have no one to make medical decisions for them if they become incapacitated - and identifying people who can act as legal "surrogates" for these individuals.

• Exploration of possible partnerships between hospice providers and long term care facilities - including nursing homes and assisted living facilities - with an eye toward providing hospice services in long term care settings.