Tuesday, September 12, 2000
11:00 AM
Minnesota Partnership to Improve 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.

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

Review meeting agenda

• "On Our Own Terms" discussion
• Revisit and validate issue list
• Lunch / voting on issues
• Prioritize issues / small group work
• Small group reports
• Public comments and introductions

"Shared experiences" was a discussion tactic used in the first meeting. The first meeting used the "shared experiences" time to give personal validation to the issues raised. This meeting used the "shared experiences" to discuss the Bill Moyers "On Our Own Terms" series.

These were a few of the many comments offered:
The problems Minnesotans are trying to tackle were shown to be nationwide dilemmas in the shows.

The excellent end of life care depicted in the series isn’t always the norm – even in hospice.

The hope was that the people who were really moved were health care professionals.

Special recognition was given to the Minnesota Partnership and especially Jan Malcolm and Karen Gervais for their wonderful job on the ½ hour show that immediately followed the first show of the series.

The show touched a nerve with the caregiver void in the United States and how the elderly need so much assistance to stay at home.

The six topics areas were:

1. Most Minnesotans prefer to die at home. Yet we lack a solid statewide support network to provide care at home.
2. Most Minnesotans (75%) die in either a hospital or a nursing home. Yet we lack consistent standards for care in institutions.
3. Many Minnesotans call the emergency response system for dying patients. Yet we do not have consistent standards to address the care of a dying patient in the EMS system.
4. Minnesota health care providers do not receive adequate end of life training in the universities, colleges or vocational schools. Practicing health care providers are not always comfortable addressing the needs of dying patients.
5. Finance and reimbursement structures do not support end of life care.
6. Reliable data on the "state of the state" in end of life care is not available.

The topics needed to be grouped and narrowed down to only a few important issues that the Commission could reasonably address over the next year.

There was much discussion and the result was four categories of issues.

• Access
• Standards
• Education, Public and Professional
• Public Policy

These issues were to be addressed after the voting and lunch break. A few key points came up for people to remember as they worked in small groups:

• Pain and symptom management
• Bereavement
• Long term care
• Lack of data in end of life care

The co-chairs decided before the meeting that voting would be the appropriate way to narrow down the list of issues to be addressed by the Commission over the next year. The voting process was explained and the meeting broke for lunch.

The four categories were voted on but the results were too close to eliminate any particular issue area.

The Commission then broke down into 4 small groups to work on each of the subject areas and each group was asked to address 4 items:

1. Identify 3 opportunities/outcomes
2. Identify what has already been done
3. Gaps and barriers
4. Identify stake holders

The members attending each group were:

• Access - Linda Norlander, Michelle Rifenberg, Elie Hands, Sally Buck
• Standards - Barry Baines, John Deihl, Paul Quie, Margaret Owens, Becky Woll, MaryAnn Stump, Don Westergard
• Education – Ed Ratner, Barry Cytron, Ben Wolfe, Catherine Blaeser, Angie Smith Lillehie, Andrew Tumberg, Libby Eid
• Public Policy – Jan Malcolm, Mark Leenay, Karen Gervais, Joanne Hilden, Jeanette Metz, Steve Lund, Dianne Bartels, Kathleen Cota

• System for training caregivers
• Allowing nursing practitioners to refer to hospice
• Education/Public Policy

2    What has been done?

• Good things have been done with palliative care
• Rural issues at the Department of Health
• Waiver issue at the Department of Human Services

• People without family caregivers
• Workforce
• Hospice isn’t available everywhere
• Financial/reimbursement barriers
• Lack of awareness
• Cognitively impaired
• Physician referral
• Cultural groups
• People having to choose between private/public services
• Cultural groups who approach end of life differently

• Doctors
• Patients / family members
• Insurers
• Employers
• Non-professional caregivers

    GOALS

• Reduce burden of illness
• Pediatric prospective considered
• Zero tolerance of bed sores
• More touch
• Emergency care
• Technology use
• "Patient bill of rights"

    BARRIERS/GAPS

• Education and money
• Based on professional perspective rather than patient/family
• System complexity
• Old thinking – lack of creativity
• Cultural differences
• Ignorance both public and professional

    STAKEHOLDERS

• Payers
• Public
• Professional

    GOALS

• DNR/DNI
• Living wills
• EMS

    BARRIERS/GAPS

• Legal liability
• Territoriality across regulatory groups
• Fragmentation
• Territoriality across institutions
• Complexity

    STAKEHOLDERS

• Regulatory agencies
• Government
• Health care institutions

    GOALS

• More uniform application of pain medications for professionals
• Recognize pain control as 5^th vital sign
• Recognize pain control as an important outcome

• Fear of public and professionals
• Addiction/liability
• Pediatrics recognition
• Prejudice/bias
• Cultural shift – spiritual – religious
• Medication costs
• Lack of education
• Pain as "subjective" vs. objective

• Patients/families
• Payers
• Drug companies

• After care standard practices developed by professional groups (professionals are competent in after care)
• Required end of life education for professionals
• Required for licensure – public policy
• Required ethics competence for licensure/certification
• Public education institutions offer end of life curriculum
• Institutions educate patient/family
• Pain
• Range of end of life issues
• After care
• Conferences for professional groups of influence (e.g. journalism)
• Clergy educates congregations (e.g. pulpit teaching, Compassion Sabbath)
• Educate public to remove stigma

• Ongoing continuing education for professionals
• Media has done a lot to increase awareness
• College undergraduate education
• No interaction across disciplines
• No specific long term care initiative as regards end of life care
• MCDES bereavement conferences on after care

• K-12 education
• Professional schools
• Public
• Caregivers

• Legislators
• Boards of professional practice
• Department of children, family, learning
• Education institutional leadership
• Professional associations
• Media – MN News Council
• Community groups - issue advocates
• AARP
• Disease specific
• Lions
• Rotary
• Shriner

• Licensure requirements include end of life and after care
• Institutions provide end of life and after care education
• Influential groups are informed about end of life/after care education
• Licensure requires ethics demonstrated ability
• Public education institutions provide end of life and after care education

• Reimbursement support desired
• Access to services is increased
• Each payer type changes policy and practice appropriate to that sector

• States need more flexibility in general
• Broaden hospice benefit to be more inclusive of needs of patients with advanced illness (eliminate 6 month limit)
• Seek demo?
• Need consumer advocacy

• Clarify current rules for providers
• Establish different asset limit for enrollment in palliative care program

• Pursue more uniform definitions
• Develop and promote community norms; best practices
• Advocate for reimbursement for care conversations – need longer conversations

5    Self Pay/Out of pocket

    - Education and assistance for consumers on asset management

Several members of the public attended the meeting. They commented on the value of the information and the complexity of the issues presented.

The meeting achieved the goals that the co-chairs desired.

As regards the small groups, there is an interdependency among the groups, no one issue can stand alone. In addition, any one member will be able to contribute/advocate for their specific issue in any small group that they were not a part of at this meeting.

It might take a while as the issues are worked on to grasp exactly what the Commission is settling on. The object is not to lose the issues that had to be postponed due to their being out of the range of the Commission objectives. This information will be used when decisions are made as to where the efforts will go next. For this reason the Minnesota Partnership will record and save all information for any future reference.

Reminder: Commission meetings, minutes and information are all open and available to the public.

Tuesday, November 14^th, 2000

Minnesota Department of Health Service Center

Snelling Office Park Building

1645 Energy Park Drive

Located off of Energy Park Drive just west of Snelling Avenue

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

Elinor Hands

Minnesota Hospice Organization

Dr. Joanne Hilden

Pediatric Consultant

Dr. Mark Leenay

Minnesota Medical Association

Angie Smith Lillehei

Deva House

Steve Lund

Minnesota Homecare Association

Commissioner Jan Malcolm, Co-Chair

Minnesota Department of Health

Theresa McManaman

Insurance Consultant

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 Center for Death Education and Support

Becky Woll

Minnesota Hospital and Healthcare Partnership

Staff Support:

Minnesota Partnership to Improve End of Life Care