Tuesday, March 13, 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

- Allina is hosting a pain conference March 21-23
- The Florence Wald lectureship is hosting a lecture on pediatric end of life care on April
  11 – Admission is free
- MHO is holding a spring conference in St. Cloud April 19-20
- The Center for Bioethics is holding a conference on physician assisted dying April
  27-28

Dr. Baines introduced himself as a Commission co-chair and informed everyone that Commissioner Malcolm was unable to attend. 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 Commission welcomed Okokon Udo from the Center for Cross-Cultural Health.

• At the last Commission meeting there was a request to hold a legislative hearing. Unfortunately, the legislature’s Health and Human Services committee was unable to schedule time for such a hearing.
• There was a reworking of Standards sub-committee recommendations into the Guiding Principles after the last meeting.
• The Partnership is conducting a death certificate analysis to determine the demographic make-up of the dying population.
• The Partnership will be conducting a series of regional data gathering meetings throughout the state. One goal of these meetings will be to gather feedback on the work the Commission has produced thus far.

• Identify public policy issues that require further research. Each Commission member will decide if their organization would be willing to work towards solving each issue.
• Recommendations on the Guiding Principles.

• Commission members were asked to review the proposed public policy issues over lunch.

Commission members asked that cross-cultural/minority groups be explicitly included in the preamble of the final report of recommendations.

ISSUE #1 – Only doctors can refer someone to hospice.

• Nurse practioners should be allowed to refer, but are prevented under Medicare rules.
• Research should be done regarding national efforts.

Interested in working for a solution: Elie Hands, Margaret Owens, Libby Eid

ISSUE #2 – Making end of life decisions for "adult orphans" without decision-making capabilities.

• In the past decisions about adult orphans were left to each institution.
• Research should be done on the number of adult orphans in the state.

Interested in working for a solution: Karen Gervais, Dianne Bartels, Mark Leenay, Elie Hands, Kay Markling, Margaret Owens, Libby Eid

ISSUE #3 – Access to narcotics is restricted.

• Some MDs may be reluctant to prescribe narcotics.
• Geographic areas effected are rural and inner city.

Interested in working for a solution: Mark Leenay, Libby Eid

ISSUE #4 – Children in greater Minnesota often lack access to pediatric hospice services.

• This could be a rural access/licensing problem.
• The problem is not just restricted to pediatrics, but adults in rural Minnesota are effected as well.
• Hospices are certified by Medicare regulations – which are based on adult disease progression and care needs.

Interested in working for a solution: Joanne Hilden

ISSUE #5 – Hospice enrollment is often delayed due to the six-month prognosis guideline.

• Frequently there is no steady downward progression and MDs are reluctant to give a six-month prognosis.
• This issue could be a provider education item.

Interested in working for a solution: Karen Gervais, Libby Eid, Margaret Owens

ISSUE #6 – Some patients cannot enroll in hospice because they are using palliative chemotherapy, radiation therapy or transfusions.

• These procedures are expensive and smaller hospice programs cannot afford to sustain expensive treatments.
• Reimbursement isn’t set to a realistic scale for these kinds of treatments to be offered.

Interested in working for a solution: Kathleen Cota, Libby Eid

ISSUE #7 – Some end of life services are delayed to health care staffing shortages.

• It’s particularly difficult to attract people to work with dying persons.

Interested in working for a solution: Elie Hands, Rochelle Schultz, Kay Markling, Margaret Owens, Steve Lund

ISSUE #8 – MA spend down requirements may prevent persons from receiving needed end of life services.

• Is this issue about impoverishment at the end of life or should there be exceptions for persons at the end of their lives?
• This might be an insurance issue rather than a government programs issue.

Interested in working for a solution: Kathleen Cota, Dianne Bartels, Karen Gervais, Jeanette Metz, Libby Eid, Steve Lund

ISSUE #9 – There is a barrier for people on MA and living in residential long term care to enroll into hospice services due to the complex billing structure.

Interested in working for a solution: Elie Hands, Margaret Owens

ISSUE #10 – MA does not pay for care in residential hospices.

• This problem will increase as the population ages.

Interested in working for a solution: Elie Hands, Steve Lund

Commission members will submit comments on the Guiding Principles to Partnership staff before the next meeting.

ISSUE #11 – Some private payers do not have a hospice or an end of life benefit.

• This item should be researched in further detail.

Interested in working for a solution: Karen Gervais

ISSUE #12 – Some assisted living programs resist the enrollment of their clients in hospice programs.

• Should approach the Long Term Care Task Force about this issue.

Interested in working for a solution: Kathleen Cota, Kay Markling

ISSUE #13 – Pain relief may be delayed do to limits on emergency medical providers.

• Mary Hedges clarified saying that not all ambulatory services staff paramedics.

Interested in working for a solution: No one

ISSUE #14 – Unwanted emergency services may be provided due to variations in home DNR/DNI implementation procedures.

• Possible to accomplish without legislation
• Other states have implemented a universal DNR/DNI form successfully

Interested in working for a solution: Karen Gervais, Dianne Bartels, Mary Hedges, Steve Lund

ISSUE #15 – Lack of payment structure for emergency palliative care.

• This issue is also effected by the fact that some ambulatory services are staffed with EMTs.

Interested in working for a solution: No one

ISSUE #16 – Some nursing homes may benefit from education on how to provide appropriate end of life care because of real or perceived regulation violations.

• There does not seem to be any evidence to support this issue.

Interested in working for a solution: No one

ISSUE #17 – Some health care providers do not send satisfaction surveys to family members of deceased persons.

• This leads to biased results because there are no opinions on how the dying patients are cared for.
• Possible to look at different survey tools for a health care institution to use.

Interested in working for a solution: No one

ISSUE #18 – Lack of funding for state and federal surveys of hospice programs.

• Money for surveys comes from hospice licensure fees.
• The federal government prioritizes surveys for the Department of Health.
• This could be an issue of public safety.

Interested in working for a solution: Rochelle Schultz, Elie Hands, Kay Markling

Nancy Meyers asked that the preamble of the final recommendation include a section on rules/laws surrounding interpreters for non-English speakers.

• Kathleen Cota announced that she is working to reverse the incorrect assumption that persons on Medical Assistance with assistant services (such as a personal care attendant) would have to waive the right to such services upon entering a hospice program. This assumption is incorrect. An official bulletin will go out soon.
• Staff will review the issues discussed today and do further research on topics that were of interest and deemed appropriate.
• Guiding Principles will be e-mailed or mailed to all Commission members who will make suggestions and then return to Partnership staff.

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

Dianne Bartels
University of Minnesota Center for Bioethics

Kathleen Cota
Minnesota Department of Human Services

Lillian Eid
AARP

Karen Gervais
Minnesota Center for Health Care Ethics

Elie Hands
Minnesota Hospice Organization

Mary Hedges
Minnesota Emergency Services Regulatory Board

Dr. Joanne Hilden
Pediatric Consultant

Gail Jude
Minnesota Citizens Concerned for Life

Dr. Mark Leenay
Minnesota Medical Association

Steve Lund
Minnesota Homecare Association

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

Okokon Udo
Center for Cross-Cultural Health

Staff Support:

Brenda Paul
Minnesota Partnership to Improve End of Life Care

Minutes by Brenda Paul, MN Partnership to Improve End of Life Care