Tuesday, September 12, 2000
11:00 AM
Minnesota Partnership to Improve End of Life Care

Minnesota Commission on End of Life Care

Call to order at 11:10 AM

Ed Ratner from the Minnesota Partnership to Improve End of Life Care introduced co-chairs Barry Baines, MD and Deputy Commissioner Julie Brunner (filling in for Commissioner Jan Malcolm) from the Department of Health. Members introduced themselves. A list of members present at the meeting is attached at the end of this document.

Guests attending the meeting who introduced themselves were: Tom Scheck, Minnesota Public Radio; Buddy Ferguson, Department of Health; Kay Markling, Department of Health; Linda Sutherland, Department of Health; Linda Petersen; and Bob Anderson, Metropolitan Area Agency on Aging.

Please see attached power point slides that were in the Commission on End of Life Care packets for the information presented on the history and background of the Minnesota Partnership to Improve End of Life Care.

Deputy Commissioner Julie Brunner identified the goals of the Commission on End of Life Care:

• By the end of 2000, the Commission will identify three major priorities,
• By the end of 2001, the Commission will develop recommendations and strategies on at least one of these priorities.

The Commission will identify issues in the following areas:

• Inadequate or inconsistent access to quality care,
• Limited knowledge or skills among health care providers in the area of end of life care,
• Limited health care resources for palliative and end of life care.

The representatives from the Senate and House of Representatives have not yet been identified. The Department of Health will look into this before the September meeting.

"Hospice: A Photographic Inquiry" is an art exhibit coming to the University of Minnesota’s Weisman Art Museum which begins May 20^th and runs through August 13^th.

The Opportunities Experience was a chance for Commission members to express their end of life healthcare concerns by sharing a personal story.

Barry Baines identified one or two word themes from the stories:

 

Inadequate system support for dying at home Medical Spiritual Social Emotional ® Financial

 

What are the broadest dimensions for end of life and broader dimensions of palliative care Sudden death Protracted death Continuity [of care] Financial realities Family impact Impact/involvement of/on family unit ® Includes disruption of daily life, people in home, etc.

 

Honoring/Not-honoring patient and/or family wishes More or less treatment Communication ® Too much/too little time with physicians

 

Lack of advance directives/physician signed DNR/DNI orders Emergency system does not recognize living wills, only MD signed orders In approximately 50% of emergency response cases, the DNR/DNI order cannot be located Lack of easily recognizable standard DNR/DNI forms Barrier to providing "Emergency Palliative Care" through the emergency system is the no transport/no pay policy One misconception is that the emergency system treats DNR/DNI orders as ‘Do Not Treat’

 

Uncertainty/unpredictability of illness expectations ® Research indicates that MD’s and RN’s overestimate prognosis by 500% Bereavement issues – finding meaning in death ® Hospitals don’t acknowledge death Relating to acute bereavement, there is no system outside of hospice Can you teach compassion? Anticipating grief/loss, not just death Need more people trained in bereavement outside of hospice

 

Inadequate system support for dying Lack of sensitivity training/education for professionals

Break

Bob Anderson of the Metropolitan Area Agency on Aging remarked that he is excited to work with the Minnesota Partnership to Improve End of Life Care and the Minnesota Commission on End of Life Care.

Toni Baker of the Metropolitan Area Agency on Aging introduced herself but did not comment.

Linda Sutherland from the Minnesota Department of Health said that the stories have been helpful in raising issues/problems that could be addressed individually to help accomplish a lot of changes in end of life healthcare.

Kay Markling from the Department of Health and Jane O’Brien from the Minnesota Partnership to Improve End of Life Care attended to observe.

Using the information sheet from the Commission packet, the nine issues listed were presented by Dr. Baines and then discussed by the group. The group then worked to validate the issues. A flip chart was used in this section to identify major points raised, the flip chart phrases from this section are written in boxes.

Deputy Commissioner Brunner suggested that a running list of terms to be kept and defined for the Commission, public and intended audience. Two specific terms arose during the meeting that require definition:

• Hospice
• 3-World View

Issue #1 – Barriers to Dying at Home

Jeannette Metz verified the issue by stating that widowed/unmarried elderly persons often don’t have a primary caregiver and that is a barrier to dying at home. Dr. Baines clarified and said that many people do die in long term care facilities. Dr. Ratner further commented that the desire to die at home isn’t necessarily "home", but wherever the person is familiar.

Rabbi Barry Cytron is concerned with the data, or lack thereof, on end of life care presented in the information sheet.

Catherine Blaeser had a question about deaths that are able to occur at home, how many deaths could not under any circumstances occur at home? Dr. Mark Leenay clarified by saying that roughly 10% of deaths are sudden.

Kathleen Cota suggested that financial incentives drive the access to services and hospice. Dr. Ratner suggested that most people near the end of life are receiving some type of services, which aren’t necessarily treated as referral sources to hospice and other healthcare services. Deputy Commissioner Brunner suggested that financial incentives to end of life care, either more or less, could be a segment of this issue. Dr. Leenay suggested the term ‘financial barriers’ rather than ‘incentives’.

Elinor Hands brought up the workforce issue. The lack of capable workforce to visit people at home is another barrier to dying at home.

Dr. Baines assessed this issue as validated.

 

Barriers to Dying at Home Surviving/remaining spouse does not have enough support to remain at home Many persons live in nursing homes and they can be thought of as "home" to many people Reliability of studies – cohorts, changing one’s mind, etc. How do financial barriers prevent/help people to die at home Depleted healthcare workforce

Issue #2 – Late Enrollment

Dr. Baines reviewed the information. When people are enrolled in hospice, they usually don’t receive services for very long. Angie Smith Lillehei wished to call this issue "Barriers to Early Hospice Referral" instead of "Late Enrollment". Changing the name could help expand this issue. Dr. Ratner suggested that it could be referred to as late involvement of palliative care.

Ms. Cota suggested that this issue is reflective on our society being a death denying culture.

John Diehl suggested that this issue could fall as a sub-issue under several other issues raised. Theresa McManaman agreed by stating that she didn’t know how the Commission could deal with this problem on its own when it fits more appropriately under other issues.

Dr. Leenay clarified that there are barriers to enrollment under the hospice Medicare benefit, which is out of the Commission’s range of influence. The concern was that the issue could become too broad. Dr. Leenay also felt that this issue could fall under other issues.

Dr. Baines summarized that this issue is a valid issue, but it could possibly be assumed under another issue as a sub-point.

 

Late Enrollment Name of this issue should be changed to "barriers to enrollment" and/or "late involvement of palliative services" This issue could be a sub-point under other issues

Issue #3 – Inconsistent Institutional Care

Dr. Ratner shared the story of one nursing home that uses floral linen when a patient is actively dying. It is a subtle way to notify caregivers of the situation, and not all nursing homes have a policy of this nature.

Ms. Metz and Linda Sutherland both raised the issue of staffing in long term care facilities and the lack of consistency found across the state.

 

Inconsistent Institutional Care Case mix reimbursement

Issue #4 – Inconsistent Emergency Transportation Standards

Dr. Baines assessed that this issue had already been validated by the stories told in the first segment of the meeting.

Issue #5 – Lack of Certified Palliative Care Health Professionals

Ms. Hands raised the question of whether or not it is important to be certified. Does certification effect the level of expertise and quality of care? Ms. Blaeser questioned how one would define a level of qualification without certification. Linda Norlander replied to this concern by stating that certification is a measure by which to gauge the level of expertise of an end of life healthcare worker, however that does not suggest that non-certified caregivers are unqualified.

Dianne Bartels suggested that we define this issue more broadly. She suggested it might fit better under the education of healthcare professionals category.

 

 

Lack of Certified Palliative Care Health Professionals Should be renamed "prepared professional palliative care certified" Measures education/training/(competency - ?) Could be a sub-point under educational issues Education of caregivers Hospice certification leaves parts of state without hospice services

Issue #6 – Lack of End of Life Education for Health Professionals

Chief Huisenga wanted to include healthcare providers that come from education/training institutions other than colleges and universities.

This issue was validated without further discussion.

Issue #7 – Loss of Services

Dr. Baines and Ms. Hands explained this issue. Under the hospice benefit, patients could be forced to relinquish their long-term caregivers (i.e. PCA’s) in order to enroll in hospice. Ms. Hands clarified by saying this issue arises most with the waivered services and might be an ADA issue.

Ms. Cota said she would look into this issue on her own at the Department of Human Services.

Mr. Diehl remarked that this is more of a reimbursement criteria issue than a regulatory issue and it might fit better under the issue "The Expense of End of Life". Ms. Norlander said that it is not entirely a reimbursement issue, because part of the issue involves the financial burden on the family due to loss of services.

 

Loss of Services Waivered services and hospice services are now treated as mutually exclusive Reimbursement standards are the cause of this problem This issue might fit better under "The Expense of End of Life" category Could come from belief that some of the waivered services with hospice would be redundant

Issue #8 – Inconsistent End of Life Data

This issue was validated during the "barriers to dying at home" discussion.

Issue #9 – The Expense of End of Life

Ms. Blaeser expressed concern that end of life patients would be treated as a cost-saving population when these are the people who are sickest. Everyone agreed that the issue needed to be re-worded to better capture the meaning of this issue.

Dr. Baines and Dr. Ratner talked of the impoverishment of families at the end of life due to the expense of end of life care of a loved one. Dr. Ratner suggested that a model be made for insurance at the end of life not for healthcare costs, but for the survivors to ensure they do not fall below the poverty level as a result of medical expenses.

Mr. Diehl stated that the desire isn’t to "skinny down" spending on the end of life population but rather to use the money for that population more appropriately to provide higher quality care to dying patients.

 

The Expense of End of Life Will be renamed "cost and reimbursement of end of life care"

Dr. Baines called for further comments on issues. Mr. Diehl commented that he would like to see the Commission work with the consumer side as well as the vendor side of end of life healthcare. Chief Huisenga commented that there is still a need to match resources with needs. He also stated that the resources available are still being used inappropriately.

Dr. Baines summarized the Commission meeting:

• Tried to pull together persons with expertise in wide variety of fields related to end of life care
• Basic knowledge on how the Commission came together
• Went over goals of the Commission
• Discussed/validated the list of issues

For the next meeting:

• The discussion today will be written up and distributed to everyone; the absent members will receive the information from today to help keep them informed

Dr. Baines thanked everyone for their participation and attention. He also thanked Deputy Commissioner Brunner for filling in on short notice.

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

Deputy Commissioner Julie Brunner (for Commissioner Jan Malcolm) Co-Chair
Minnesota Department of Health

Dianne Bartels
University of Minnesota Center for Bioethics

Catherine Blaeser
Minnesota Citizens Concerned for Life

Kathleen Cota
Minnesota Department of Human Services

Rabbi Barry Cytron
Jay Phillips Center for Jewish-Christian Learning

John Diehl
Minnesota State Bar Association

Karen Gervais
Minnesota Center for Health Care Ethics

Elinor Hands
Minnesota Hospice Organization

Chief David Huisenga
Minnesota Emergency Medical Services Regulatory Board

Mark Leenay, MD
Minnesota Medical Association

Lillian Eid
American Association of Retired Persons (AARP)

Angie Smith Lillehei
Deva House

Theresa McManaman
Minnesota Council of Health Plans

Jeanette Metz
Minnesota Board on Aging

Margaret Owens
Care Providers of Minnesota

Paul Quie, MD
University of Minnesota Academic Health Center

Edward Ratner, MD
Minnesota Partnership to Improve End of Life Care

Lisa Solterman
Minnesota AIDS Project

Don Westergard
Minnesota State Council on Disability

Staff support:
Linda Norlander and Brenda Paul
Minnesota Partnership to Improve End of Life Care
Minutes by Brenda Paul, MN Partnership to Improve EOL Care - brenda@tcaging.org