Tuesday, January 9, 2001
11:00 AM
Minnesota Partnership to Improve End of Life Care

Minnesota Commission on End of Life Care

The Minnesota Commission on End of Life Care consists of 30 members representing a wide variety of organizations with an interest in improving end of life care. The Commission is co-sponsored by the Minnesota Department of Health and the Minnesota Partnership to Improve End of Life Care and is supported by a grant from the Robert Wood Johnson Foundation. The goals of the Commission are to prioritize and identify three problems in end of life care and develop recommendations and strategies on at least one of the identified problems.

• The mission of the Commission on End of Life Care is to advance public policy that will improve end of life care in Minnesota.
• Announcements

The National Congress on End of Life Care will be held February 12^th and 13^th in Alabama. Linda Norlander will be presenting and she has information on registration if anyone would like to attend.

The Gentle Journey conference on chronic illness in hospice (speaker - Brad Stuart, MD) will be held on February 22^nd from 6:00 to 8:30 PM. Location is Sheraton Inn Airport in Bloomington. Cost is $15. Call 651-232-5104.

Dr. Baines and Commissioner Malcolm introduced themselves as the Commission co-chairs. The members of the Commission on End of Life Care introduced themselves. A complete list of attendees appears at the end of the minutes.

• The focus at the last meeting was on small group work within the four policy areas of ACCESS, STANDARDS, EDUCATION and PUBLIC POLCY.
• The groups narrowed down their list of issues to one problem and worked out strategies for that issue.

• Continue to establish sub-committee work with language for draft recommendations.
• Achieve preliminary consensus on at least one or two of the groups’ recommendations. Consensus will be reached when members can support and advocate for a recommendation.
• The draft recommendations will be the starting point for the background research to demonstrate how recommendations could be carried out.

ACCESS SUB-COMMITTEE

• The access group decided to form a database of at least semi-formal end of life programs around the state and certified end of life nurses and doctors. This could lead to a resource guide of established end of life programs.
• The group also decided to look at what the established medical system can do to aid other cultures in their care for dying persons. Karen Gervais will attempt to apply the "Compassion Sabbath" tool used in other parts of the country to outreach to different cultural groups. With this tool hospices could adapt to different cultural needs. This would prevent an individual cultural group from requiring their own specialized end of life program.
• The group also decided to examine the characteristics of geographic areas where end of life programs are not offered with the hope of connecting these areas with already existing end of life services.
  
• The Commission members all agreed that the access sub-committee is on the right track.
• Another idea to improve access to end of life services is the possibility of a risk pool, where several hospice programs band together to insure themselves against bankruptcy due to a costly patient. This would be dependent on the findings from the geographic barriers to hospice services.
• The attack strategy is information gathering.

STANDARDS SUB-COMMITTEE

• The standards sub-committee will create a tool for the public that educates them on the standards for end of life care.
• Provider education should be a part of public education. Without the provider education and collaboration the tool could be seen as adversarial.
• Provider symptom management education is already being done by other educational groups.
• One possibility is to have example pain policies and consultants to help implement the policies that would bring hospitals up to date on the new JCAHO standards.
• The standards group will include provider education in their recommendation.

EDUCATION SUB-COMMITTEE

• The sub-committee recommends that community organizations educate their members on end of life care. The public will then become the catalyst for change by demanding better care for themselves and their loved ones.
• The term "Death: On Our Own Terms" might be offensive to some religious and/or cultural groups, a different title should be chosen.
• Institutional education has fallen off the radar, which could be an inefficient use of the Commission’s influence.

PUBLIC POLICY SUB-COMMITTEE

• Since the public policy meeting in December, it has been discovered that the Commission under the rules of the Robert Wood Johnson Foundation can not lobby to the legislature for changes in public policy in the form of a bill. The Department of Health has constraints against doing so as well.
• The Commission can still make public policy suggestions - it just can’t advocate for them.
• One way to get in front of the legislature would be an informational hearing. Linda Sutherland from DOH and the Partnership staff will try to set this up for the upcoming weeks before the legislature gets down to hearing bills.

The goal for sub-committee work is to refine the recommendations:

Access - Health care providers in end of life care should increase outreach to geographically and culturally underserved populations.

Attending the Access small group – Linda Norlander, Sally Buck

Standards - Health care providers should inform the public about reasonable expectations and standards for end of life care in five to ten core areas.

Attending the Standards small group – Barry Baines, Paul Quie, Kathleen Cota, Margaret Owens, Don Westergard, Becky Woll, Andrew Tumberg, Brenda Paul

Education - Member-based community organizations should inform their members about end of life issues.

Attending the Education small group – Ed Ratner, Libby Eid, Chris Osborne, Barry Cytron, Cathy Blaeser

Public Policy - The executive branch of the state government should identify and reduce barriers to end of life care.

Attending the Public Policy small group – Jan Malcolm, Mark Leenay, Dianne Bartels, Karen Gervais, Steve Lund, John Diehl, Elie Hands, Jane O’Brien, Kay Markling, Linda Sutherland

ACCESS

Recommendation: Communities and providers should partner to provide end of life care to underserved populations including, but not limited to:

• Rural populations

• Cultural populations

• High-cost patients

• Homeless/homebound populations

• Consensus was reached on this recommendation with no one objecting.

STANDARDS

Recommendation: Health care providers and community-based organizations should select, endorse, advise and inform the public about reasonable expectations and standards for end of life care. This information will include pain management and at least two other key issues (not limited to symptom management).

Consensus was not reached on this issue. There were 5 people who were either mildly in favor of or could not support this recommendation. These five people will need the following to support/advocate for the recommendation:

• Definition of the two other issues that were not yet listed
• Remove "inform public" from the recommendation
• To know whether the standards will be state-level or organizational level

EDUCATION

Recommendation: Community organizations with membership should empower their members to advocate and demand high quality end of life services from their providers.

• Please see Diagram 1 for explanation of the education subcommittee strategy.
• There was not time for consensus voting on this issue.

DISCUSSION ON THE EDUCATION/STANDARDS PROPOSALS

• There was a proposal to merge the Standards and Education recommendations. This proposal was not favored due to the differences in recommendations.
• The Standards group will be the creation/selection/endorsement team for appropriate standards of end of life care and the education that needs to accompany them.
• The education group will be the distribution and education team for the Standards’ group message.

PUBLIC POLICY

Recommendation: The Commission on End of Life Care shall gather data and identify barriers to end of life care. We will then prioritize and articulate these barriers, providing specific solutions for public policy makers.

• There was not time for consensus voting on the public policy recommendation.
• The sub-committee would like to try and schedule a legislative informational hearing in the meantime.

There was no public comment.

Sub-committee meetings will be scheduled in the next few weeks as needed.

Dr. Barry Baines, Co-Chair
Minnesota Partnership to Improve End of Life Care

Dianne Bartels
University of Minnesota Center for Bioethics

Catherine Blaeser
Minnesota Citizens Concerned for Life

Sally Buck
Minnesota Center for Rural Health

Kathleen Cota
Minnesota Department of Human Services

Rabbi Barry Cytron
Jay Phillips Center for Jewish-Christian Learning

John Diehl
Minnesota State Bar Association

Lillian Eid
AARP

Karen Gervais
Minnesota Center for Health Care Ethics

Elie Hands
Minnesota Hospice Organization

Dr. Mark Leenay
Minnesota Medical Association

Steve Lund
Minnesota Homecare Association

Commissioner Jan Malcolm, Co-Chair
Minnesota Department of Health

Linda Norlander
Minnesota Partnership to Improve End of Life Care

Chris Osborne
Minnesota Coalition for Death Education and Support

Margaret Owens
Care Providers of Minnesota

Dr. Paul Quie
University of Minnesota

Dr. Edward Ratner
Minnesota Partnership to Improve End of Life Care

Andrew Tumberg
Minnesota Health and Housing Alliance

Don Westergard
Minnesota State Council on Disability

Becky Woll
Minnesota Hospital and Healthcare Partnership

Staff Support:

Brenda Paul
Minnesota Partnership to Improve End of Life Care

Minutes by Brenda Paul, MN Partnership to Improve End of Life Care – brenda@tcaging

Diagram One does not appear here.  Please call Brenda at (651) 917-4635 for a paper copy if you need.