Tuesday, November 14, 2000
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
• Review today’s agenda

Welcome and Introductions

Review September 12^th meeting

"The End in Mind": Goals for today

Subgroup work

Subgroup reports

Public comment

Wrap-up and sign-up for subgroup committees

Barry Baines introduced himself as one of the co-chairs of the Commission and explained that Jan Malcolm, the other co-chair, would be arriving shortly. 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 first meeting in May put forth a lot of issues in end of life care and the field was narrowed down to 6 topic areas
• The September meeting grouped the issues into four categories, which serve as the four subgroups
• The four subgroups are ACCESS, STANDARDS, EDUCATION and PUBLIC POLCY

A list of the issues that arose in the subgroups from the last meeting was presented for the subgroups to use as a guide to the issues.

There are only three sessions after this one to make a preliminary report.

The goal for the meeting was for each subgroup to choose one issue that will be their priority. The issues that don’t make the cut won’t be lost. They will be included in the final report.

The subgroups were told that while considering which issue to select as the priority issue to take into consideration the "concreteness" and "solvability" of their issue, what can be accomplished and what the barriers to solving their issues might be.

There are going to be subgroup committee meetings between this meeting and the January 9^th Commission meeting. Everyone needs to sign-up for at least one subgroup committee. Subgroup committees will help more work to get done and will also allow people to provide input into more than one subgroup.

Members were encouraged to take up an issue on their own if there was an issue that didn’t make the priority and could be tackled by an individual or the organization they represent.

Much discussion was offered on the failure to include palliative care under the access subgroup set of suggested issues. It was suggested that palliative care be included in any discussion about accessing end of life care.

Another suggestion arose that the public’s attitude towards death "as the enemy" be included as a preamble to the report. This being the largest barrier to providing and accessing good end of life care.

Commission divided into subgroups to select their one issue and offer a report to the collective group as to why they chose their particular issue.

The Commission members attending each subgroup session were:

• Access: Linda Norlander, Nancy Gelle (for Elie Hands), Andrew Tumberg
• Standards: Becky Woll, Joanne Hilden, Don Westergard, Mary Hedges, Margaret Owens, Barry Baines, Catherine Blaeser
• Education: Ed Ratner, Ben Wolfe, Steve Lund, Libby Eid
• Public Policy: Jan Malcolm, Dianne Bartels, Caryn Ireland (for Theresa McManaman), Mark Leenay, Jeanette Metz, Michelle Rifenberg, MaryAnn Stump, John Diehl, Karen Gervais, Kathleen Cota

ACCESS

Issue: Develop and recommend strategies to make hospice care available to all Minnesotans.

1. Palliative care was not included because it is more of a concept and therefore harder to increase access to
2. A survey of geographic areas throughout Minnesota will help to discover where, who and why people can’t access hospice services everywhere
3. Prepare for the possible barriers to access to be staff and money issues, training issues and policy issues
4. Look at viability of hospice programs outside of the metro area, select a successful program, analyze its successes and try to model
5. Issue to keep in consideration is cultural diversity of staff and recipients of care

STANDARDS

Issue: Establish and publicly disseminate expectations for patients, families and healthcare providers regarding optimal symptom control.

1. Identify top 5 to 10 symptoms to develop symptom algorithms around
2. Make algorithms in easy to follow and easy to understand formats for public and health care professionals, using wording that encourages partnership among providers
3. Distribute / make algorithms available in as many venues as possible, examples: hospitals, nursing homes, long term care, websites, Commission organizations, brochures, media, professional groups, public forums, physician’s offices, nurses and social workers, religious organizations, cross-cultural language, support groups, parish nurses, etc.
4. A test of one algorithm (pain) will occur by the March Commission meeting - the Partnership will help develop and Commission organizations will help distribute the algorithm in 3 to 4 settings
5. Barriers might be legal, ethical, time sensitive, provider resistance, pharmacy concerns

EDUCATION

Issue: Use community leaders to increase and promote public awareness around the issues identified by the Commission. Call the grassroots public awareness effort "Death on Our Own Terms".

1. Help distribute information that comes out of the Commission to community leaders and encourage them to do something within their spheres of influence
2. Strategies might include using a working collaborative or a website
3. Barriers to success might be volunteer time, money and staff time

PUBLIC POLICY

Issue: Recommend policies that insure that hospice and end of life care is available to all people in Minnesota.

Barrier analysis specific to public policy

Groups of 2-3 people will analyze the following identified barriers to accessing hospice and end of life care: spending down income, waiver program, understanding of the Medicare hospice benefit, six month eligibility interpretation, difficulties in community care coordination, medical doctor referral required for hospice, asset test, capitated payment, survey standards (eg: weight loss, forced-feeding), guardianship and perception of risk, no clear and uniform DNR/DNI determinations

Other resources needed: DHS staff, congressional delegation, HICFA, federal advocacy organizations (eg: NHO), MDH, MSHO, MHO, other RWJ projects, policy chairs HHS, hospital association, caregivers, Minnesota Medicine, legal, Trish MacTaggert

Match barriers to resources

One of the best ways to make change happen will probably be amongst the Commission member organizations themselves.

Palliative care was again mentioned as important to include in the access issue.

The final Commission report will not be limited to accomplishable feats, but will include every issue that has been brought forward.

There was no public comment.

We’re only limited by how much time the Commission members and their organizations would like to commit.

Subgroup meetings will meet in December.

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

Kathleen Cota

Minnesota Department of Human Services

John Diehl

Minnesota State Bar Association

Lillian Eid

AARP

Nancy Gelle (for Elie Hands)

Minnesota Hospice Organization

Karen Gervais

Minnesota Center for Health Care Ethics

Mary Hedges

Minnesota Emergency Medicine Regulatory Board

Dr. Joanne Hilden

Pediatric Consultant

Caryn Ireland (for Theresa McManaman)

Insurance Consultant

Dr. Mark Leenay

Minnesota Medical Association

Steve Lund

Minnesota Homecare Association

Commissioner Jan Malcolm, Co-Chair

Minnesota Department of Health

Jeanette Metz

Minnesota Board on Aging

Linda Norlander

Minnesota Partnership to Improve End of Life Care

Margaret Owens

Care Providers of Minnesota

Dr. Paul Quie

University of Minnesota

Dr. Edward Ratner

Minnesota Partnership to Improve End of Life Care

Representative Michelle Rifenberg

Minnesota House of Representatives

MaryAnn Stump

Minnesota Council of Health Plans

Andrew Tumberg

Minnesota Health and Housing Alliance

Don Westergard

Minnesota State Council on Disability

Ben Wolfe

Minnesota Coalition for Death Education and Support

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