Tuesday, May 15, 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.

Welcome

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

Dr. Ed Ratner introduced himself as the meeting facilitator. He explained that neither co-chair Dr. Barry Baines nor co-chair Commissioner Jan Malcolm were able to attend the meeting. Commission members then introduced themselves. A complete list of members in attendance appears at the end of this document.

• The March 13^th meeting involved discussion of the 18 proposed public policy issues and identifying which issues the Commission would be interested in researching further as possible recommendations.
• In between the March 13^th meeting and the current one all Commission members were asked to give opinions and suggestions for changes to the Guiding Principles document.
• The staff conducted preliminary research on the public policy issues of interest:

• Nurse practitioners and physicians assistants inability to refer to hospice.
• Lack of hospice surveys for quality assurance.
• Lack of uniform DNR/DNI standards of care for end of life patients.
• Inadequate end of life care and procedures for "adult orphans".
• MA reimbursement for residential hospice.

• Staff has also recently conducted interviews in two communities in greater Minnesota, Breckenridge and Little Falls. Discussions revolved around the state of end of life care in those areas and feedback on the work of the Commission. Two more meetings are to take place in June in Duluth and Rochester.
• To research the access recommendation, staff has been interviewing minority and immigrant community representatives since the March 13^th meeting. Staff will write a report on their findings when interviews and literature searches are complete.
• The University of Minnesota performed an analysis of death certificate data that will be used in the final report.

• Approve the major components of the final recommendations
• Guiding Principles discussion
• Approve access and education recommendations
• Approve public policy issues to pursue as final recommendations
• Approve Commission final report outline

• The Guiding Principles originated out of the standards sub-committee and was intended to be an alternative to having prescribed standards of end of life care.
• The Guiding Principles will be the framework for best of practice in end of life care in Minnesota.
• Comments on the document:

• Various members supported the document for several reasons: it’s easy to understand, it pulls together a lot of the different discussions that arose within the Commission, it includes more end of life issues than just hospice care, and it addresses symptom management and suffering.
• The first principle will be changed to: "Patient and family preference for treatment and care will be discussed and respected."
• A bullet point will be added under the first principle to clarify that the patient’s decisions should be weighed above family decisions if there is disagreement between the two entities.
• Other minor changes to grammar and spelling will be made by staff according to member suggestions.

• The issue was raised that the health care systems will need reform measures to help implement the Guiding Principles.
• The points under the fifth principle (Grieving will be acknowledged.) were debated.

• One argument suggested that expecting the health care systems to provide bereavement follow-up after a death might institutionalize the acknowledgement of grief, which may be more of a community responsibility
• One member mentioned that if the Guiding Principles include a statement promising a minimum standard of bereavement that this will help with reimbursement for this type of service.
• One solution suggested that the health care systems in Minnesota could reach out into the community and other resources to assist them with the bereavement practices laid out in the fifth principle, thus preventing the medicalization of grief and the potential cost burden on the systems.
• Commission members, including representatives of health care provider organizations, agreed that health care organizations can and should play a role in bereavement support.

• Voting on the inclusion of the Guiding Principles within the final report was postponed until after the lunch break.

• The motion from Dianne Bartels to approve the Guiding Principle changes and include them in the Commission final report was seconded.
• Voting yielded unanimous approval to accept and include the Guiding Principles in the Commission final report.

• Dr. Ratner gave a presentation on an analysis of death certificates conducted by the Minnesota Department of Health.

• The data indicates that fewer people die at home versus the hospital or a nursing home based on their county of residence.
• The data also indicated very little difference in trends of people dying at home based on race or ethnicity. This lack of difference needs more elaboration and clarification to help members discuss explanations for the discrepancy (i.e. violent deaths).

• The Partnership staff found that there are areas of rural Minnesota where there is no hospice service, but there are no counties that are totally unserved.
• The staff of the Minnesota Partnership has conducted a few key constituent interviews from minority and immigrant groups around the Twin Cities. The staff will write and distribute a report when the interviews are complete to all Commission members. So far the indication is that end of life programs need to be flexible when providing care to minority and/or immigrant patients in order to remain sensitive to any special needs those patients might have.
• Minor changes to the recommendation were made.
• Recommendation: Providers and communities should partner to assure access to end of life services. Special attention should be given to populations that are often underserved such as greater Minnesota, children, and minority and immigrant communities.
• The motion from Kathleen Cota to approve and include the access recommendation in the Commission final report was seconded.
• Voting yielded unanimous approval to accept and include the access recommendation in the Commission final report.

• Reminder that the following public policy issues were selected based on the work from March 13^th’s Commission meeting, the scope of the issue, and the timeline for making recommendations.
• Members were asked to remember the voting guidelines during discussion of the following issues. Voting was based on whether or not a particular issue should be included in the final report.
• Specific recommendations will be developed over the next months for review at the September meeting.

ISSUE #1 – Nurse practitioners referring to and treating hospice patients.

• Due to the fact that nurse practitioners (NPs) are required to have a collaborative working agreement with a physician, the need to have NPs refer patients to hospice programs might be minimal. Members were not in favor of supporting any action that would allow this without much more extensive consideration of all the potential benefits and disadvantages.
• Members were interested in supporting the National Hospice and Palliative Care’s (NHPCO’s) suggested changes to the Medicare Hospice Benefit that would allow a NP to bill Medicare Part B as the attending physician does.
• Currently, if a patient is referred to hospice, their NP cannot bill Medicare Part B for visits/treatments that relate to the terminal diagnosis. Only attending physicians can do this.
• Commission members are in favor of writing a letter stating that the Commission supports NHPCO’s recommended changes to the billing regulations to allow NPs to receive payment for treating patients for reasons relating to the terminal diagnosis. This will be done instead of a recommendation on this issue in the final report.
• It was suggested that physician assistants also be allowed to bill for treating a patient. The physician assistants current billing regulations will be researched by staff.

ISSUE #2 – End of life care for "adult orphans" without decision-making capacity.

• The background information on this issue was presented to the Commission members who asked for clarification around the current process of conservatorship for adult orphans. This process was confirmed as too time consuming for end of life patients by Mary McGurran from the Volunteers of America organization (public attendee).
• It was also confirmed that over 200 adult orphans are referred to Volunteers of America for conservatorship at the end of life.
• Discussion around the use of an ethics committee as an alternative to conservatorship was not considered a viable solution. Other solutions should be explored.
• Jeanette Metz mentioned a study she conducted several years ago that discovered that 17% of nursing home patients had no family around them.
• Catherine Blaeser suggested that implementing the Guiding Principles earlier in the care process (before decision-making capacity is lost) might decrease the amount of confusion at the end of life around patients lacking a family member to speak for them.
• All but one person were in favor of including this issue in the final report with further research and alternative suggestions. The one objector was concerned about having to change state laws designed to protect adult orphan patients and physicians.

ISSUE #3 – Lack of funds for hospice surveys.

• The staff of the Minnesota Partnership found that in the 2001 fiscal year one license-only hospice has been surveyed.
• There was concern about the lack of data on whether or not hospice surveys have an impact on the kind of care that a hospice provides.
• Currently, the federal government organizes the importance and money distributed to the Department of Health for surveys of nursing homes, assisted living facilities, hospices, etc. The stipulation in the funding is that hospices be surveyed once every ten years. While the other institutions are surveyed more frequently.
• Considering that there aren’t a lot of funding avenues to pay for the surveying of hospice programs one solution is to increase the licensure fees that hospices currently pay – not considered a viable solution considering that Minnesota’s hospices pay some of the highest licensure fees in the country already.
• A vote was taken and no one was in favor of pursuing this issue any further for inclusion in the final report.

ISSUE #4 – MA does not reimburse residential hospices for room and board for patients that would otherwise qualify for assistance.

• Suggestion to rephrase this issue to "removing financial barriers to hospice".
• There are currently 5 residential hospices in Minnesota and MA/state funding does not reimburse for room and board costs. To receive MA/state funding, a residential hospice would have to follow the criteria for Medicare certification, state licensure and skilled nursing facilities.
• There are alternative funding sources utilized by the current residential hospices in Minnesota (example – foundation support) to help support the cost of patients who don’t have much money.
• Room and board reimbursement could potentially improve care for dying patients and save the state money if a patient that qualifies for hospice services is enrolled in a residential hospice as opposed to the hospital. It could also potentially cost the state more money if stays in a residential hospice are prolonged or unnecessary.
• The majority voted to include this issue in the final report. One person objected to this recommendation being included.

ISSUE #5 – Unwanted procedures may be delivered to patients who do not have a clear and easily recognizable physician-signed DNR/DNI order.

• The Emergency Medical Service Regulatory Board has indicated a universal DNR/DNI form would be helpful to emergency medical personnel. An example of the POLST form (the Physician Orders for Life Sustaining Treatment) from Oregon was shown to the Commission members.
• Catherine Blaeser said that her organization, Minnesota Citizens Concerned for Life, traditionally does not support universal forms because of the pressures placed on patients to not opt for treatment.
• There are other solutions to this problem that do not involve universal forms such as registering a DNR/DNI order with the local emergency dispatch to keep on file or increased education. It was widely discussed that a form alone would not solve any problems, it would have to be heavily publicized and have a massive public and provider education piece accompany its release to be effective.

• The group unanimously agreed to include this issue in the final report.

• The education recommendation is to increase public awareness of end of life issues and resources through education of member-based community organization groups.
• The list of proposed organizations to educate should either be very comprehensive or not listed at all to make the list as inclusive as possible.
• Partnership staff will make a "working list" of organizations to publicize the Commission final report to and will rely on the Commission members’ network of organizational contacts as well.
• The vote in favor of this recommendation being included in the final report was unanimous.

• Discussion on whether or not the Commission should entertain fully written recommendations to include in the report ended with the decision that Commission members themselves will not be allowed to add new issues and suggestions. However, there should be an allowance in the final report that allows new information to be added from the data gathered during out-state focus group meetings and cross-cultural interviews.
• Other suggestions include:

• Adding a glossary of terms
• Adding an evaluation / next steps / goals section for future work
• Adding a section for issues that were raised during the course of the Commission work but did not make it to the final report
• Add a section for the minority report and/or out-state focus group data

• Each Commission member will receive 10 copies of the Commission final report and a clean copy of the executive summary to copy and distribute as needed. The final report will also be posted on the web and made available in PDF format.

• Over the summer, work groups will form around the public policy issues to work on the final recommendations.

• "Adult orphan" work group: John Diehl, Cathy Blaeser, Dianne Bartels
• Residential hospice work group: Becky Woll, Theresa McManaman (nominated by Sharon Limesand who was sitting in for Theresa), Sally Buck, Kathleen Cota
• DNR/DNI work group: Libby Eid, John Diehl, Steve Lund, Cathy Blaeser

There were no members of the general public in attendance at the end of the meeting.

• Public policy work groups to help with the recommendations will be formed and members will be informed of all meeting times.
• Special thanks to the Commission members for their continued dedication to this very important work.

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 Bar Association

Lillian Eid
AARP

Nancy Gelle
Minnesota Hospice Organization

Mary Hedges
Minnesota Emergency Services Regulatory Board

Dr. Joanne Hilden
Pediatric Consultant

Dr. Mark Leenay
Minnesota Medical Association

Sharon Limesand
Insurance Consultant

Steve Lund
Minnesota Homecare Association

Jeanette Metz
Minnesota Board on Aging

Linda Norlander
Minnesota Partnership to Improve End of Life Care

Dr. Paul Quie
University of Minnesota

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

MaryAnn Stump
Minnesota Council of Health Plans

Andrew Tumberg
Minnesota Health and Housing Alliance

Don Westergard
Minnesota Council on Disabilities

Ben Wolfe
Minnesota Coalition for Death Education and Support

Becky Woll
Minnesota Hospital and Healthcare Partnership

Kay Markling
Minnesota Department of Health

Jane O’Brien
Minnesota Partnership to Improve End of Life Care

Brenda Paul
Minnesota Partnership to Improve End of Life Care

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