The Commission on End of Life Care Organizations and Members

AARP
Lillian Eid
AARP is a nonprofit association dedicated to shaping and enriching the experience of aging for their members and for all Americans.

Care Providers of Minnesota
Helen Framptom (Margaret Owen and Pam Guyer also served)
Care Providers is a partner organization for long-term care providers, designed to support them in providing the highest quality care to their customers.

Center for Cross Cultural Health
Okokon Udo
The Center for Cross-Cultural Health is committed to integrating the role of culture into health.

Déva House
Angie Smith Lillehei, RN, MPH
The mission of Déva House is to support children with life-threatening illness and their families by conducting programs of care, support, education, and research.

Insurance Consultant
Theresa McManaman
Medica Health Insurance will provide content and quality improvement expertise.

Jay Phillips Center for Jewish-Christian Learning
Rabbi Barry Cytron
The Jay Phillips Center for Jewish-Christian Learning, a partnership between two educational institutions, promotes interfaith understanding and cooperation.

Minnesota Board on Aging
Jeanette Metz
The Minnesota Board on Aging is a conduit for seniors and their families to access a variety of services.

Minnesota Center for Health Care Ethics
Karen Gervais, PhD
The Minnesota Center for Health Care Ethics promotes ethically-informed health care decision-making through education, decision making assistance, and scholarly contributions to the field of health care ethics and policy.

Minnesota Center for Rural Health
Sally Buck
The Minnesota Center for Rural Health ensures access to health care for rural and underserved citizens, recruits health care personnel to serve in rural communities, and assists and supports rural communities with a variety of strategies and projects.

Minnesota Citizens Concerned for Life
Catherine Blaeser
Minnesota Citizens Concerned for Life is an advocacy group that protects the human right to life through member education and by keeping the public and lawmakers informed on critical life issues.

Minnesota Coalition for Death Education and Support
Ben Wolfe, Med LICSW
The Minnesota Coalition for Death Education and Support promotes and provides education, networking opportunities and support to persons involved with care for those confronting death and their families, friends and bereaved.

Minnesota Council of Health Plans
MaryAnne Stump, RN, MS
The Minnesota Council of Health Plans is an association of nonprofit, Minnesota-based health plan companies who are dedicated to information dissemination and to improving health care access, quality, and affordability.

Minnesota Department of Health
Commissioner Jan Malcolm will serve as co-chair on the Commission on End of Life Care while representing the Minnesota Department of Health.

Minnesota Department of Human Services
Kathleen Cota
The Minnesota Department of Human Services provides health care, economic assistance, and social services for people who do not have the resources to meet their basic needs.

Minnesota Emergency Medical Services Regulatory Board
Mary Hedges (David Huisenga also served)
The Minnesota Emergency Medical Services Regulatory Board provides leadership which optimizes the quality of emergency medical care for the people of Minnesota.

Minnesota Health and Housing Alliance
Andrew Tumberg
The Minnesota Health & Housing Alliance is comprised of members who provide a complete continuum of services for older adults. The Alliance is dedicated to promoting interests through leadership, advocacy, networking and education and to helping people live as independently as possible by providing a variety of services.

Minnesota Home Care Association
Steve Lund
The Minnesota Home Care Association consists of a diverse consortium of providers who work to promote quality care in a variety of living environments and to facilitate community awareness.

Minnesota Hospice Organization
Elinor Hands
The Minnesota Hospice Organization's mission is to promote quality care for people who are dying and for their families.

Minnesota Hospital and Healthcare Partnership
Elizabeth Woll
The Minnesota Hospital and Healthcare Partnership is a trade organization representing Minnesota's hospitals and health systems.

Minnesota House of Representatives
Representative Michelle Rifenberg represented the Minnesota House of Representatives on the Commission on End of Life Care.

Minnesota Medical Association
Mark Leenay, MD
The Minnesota Medical Association is dedicated to developing and maintaining an environment in which physicians are able to deliver appropriate patient care and promote public health.

Minnesota Partnership to Improve End of Life Care
Barry Baines MD Commission Co-chair
Edward Ratner, MD, Principal Investigator
The Minnesota Partnership to Improve End of Life Care is a partnership of health care providers dedicated to raising the standards of end of life care in Minnesota.

Minnesota State Bar Association
John Diehl
The Minnesota State Bar Association works to aid the courts in administering justice, conducts programs of continuing legal education and applies the experience and knowledge of the legal profession to the public good.

Minnesota State Council on Disability
Don Westergard
The Minnesota State Council on Disability works to expand opportunities for all persons with disabilities and to advocate for policies and programs which will promote their independence and participation in society.

Pediatric Consultant
Joanne Hilden, MD provided content information on pediatric end of life care.

University of Minnesota Academic Health Center
Paul Quie MD
The Academic Health Center at the University of Minnesota strives to be a leader in the ethical, innovative and efficient discovery and dissemination of knowledge to enhance the health and well-being of Minnesotans.

University of Minnesota Center for Bioethics
Dianne Bartels, RN PhD
The University of Minnesota Center for Bioethics’ mission is to advance and disseminate knowledge concerning ethical issues and the life sciences.

Minnesota Partnership to Improve End of Life Care staff:

Linda Norlander, RN, MS Project Director

Brenda Paul, Communications Coordinator

Jackie Bruno, Education Specialist

Minnesota Department of Health

Buddy Ferguson, Policy and Communications Information Officer

Kay Markling, Facility and Provider Compliance

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Other Issues

The following is a list of issues discussed in Commission meetings but not brought forward for recommendation. While all issues identified were considered important, these were not acted upon for a variety of reasons. Some were too large for the scope of the Commission, some were out of the sphere of control of the Commission, some did not have enough support to be brought forward, and some were incorporated into other Commission recommendations.

The Commission chose not to pursue these issues because of the complexity of the private/public reimbursement system and the link to federal rules and regulations outside the scope of the Commission’s charge.

• Reimbursement for palliative care/advance care planning consultations by interdisciplinary team members (nurse, social worker, chaplain)

• Uniform definitions of end of life coverage from third-party payers

• Establishment of a different Medicaid asset limit for enrollment in programs focused on palliative or hospice care

The Commission discussed at length the issue of creating clinical standards for end of life care. Since the Commission is not a regulatory body and would not have the ability to measure or enforce standards, the Five Guiding Principles were created as a framework for care for organizations involved in creating standards. Issues identified in this area included:

• Recognition of pain as a fifth vital sign

• Health care provider licensure requirements that include competency in end of life care

• Development of symptom algorithms for such clinical areas as pain

• Development of emergency medical system protocols for provision of comfort care for dying patients

Many of the issues raised regarding public knowledge and attitudes have been more broadly addressed in the education recommendations. Concerns raised included:

• Creation of a patient bill of rights for end of life care

• Targeted education for long-term care

• Education on end of life care for grades K-12

• Work toward changing public attitude about dying and death

• Education for consumers on asset management

The following were identified as barriers to high-quality end of life care that would require changes on a federal level:

• Six month prognosis requirement to enroll in the hospice Medicare benefit

• Need for physician involvement in the plan of care for hospice enrollment

• Reimbursement "red tape" for hospice and skilled nursing facilities when a patient receiving room and board assistance through Medicaid enrolls in hospice

The following issues were identified but not acted upon for a variety of reasons:

• Depleted health care workforce—deemed too broad for the scope of the Commission

• Bedsores—addressed in a broader sense under the Five Guiding Principles and Education

• Use of the emergency medical system to manage pain—lack of demonstrated need and too clinically complex for the scope of the Commission

• Restricted access to opioids in some areas and neighborhoods—lack of demonstrated need

• Inability of patients to enroll in hospice because of expensive treatments—deferred to Minnesota Hospice Organization

• Lack of funding for the Minnesota Department of Health to conduct hospice regulatory surveys—to be handled within the Department of Health

• Resistance by assisted living programs to enroll patients in hospice programs—lack of confirmation that this is a problem

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Acknowledgements: Assistance and Input

The following people provided assistance with background information, public policy issues, and other types of additional support:

The following people were either interviewed about issues surrounding end of life care in minority and immigrant communities or they helped coordinate the interviews themselves by supplying names of possible community representatives (one interviewee from the Somali community preferred to remain annonymous):

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Letter to the National Hospice and Palliative Care Organization

The following is a copy of the letter written by the Commission to the National Hospice and Palliative Care Organization supporting their attempts to change legislation around the Medicare Hospice Benefit rules for nurse practitioner billing.

* * *

1700 Diagonal Rd., Suite 300

Alexandria, VA 22314

From: Minnesota Commission on End of Life Care

Re: NHPCO Legislative Agenda

We are writing in support of legislative changes allowing nurse practitioners to provide and bill for certain hospice services as permitted by state law. The Commission has identified this as an issue that poses barriers to timely and appropriate hospice referral.

In Minnesota, nurse practitioners provide much needed services to our elderly and under-served populations. Under current regulation, they are not allowed to bill for services once a patient has enrolled in hospice care under the Medicare Hospice Benefit. Because of this, many nurse practitioners are reluctant to refer patients for needed hospice services. If patients enroll, nurse practitioners are forced to either provide care without reimbursement or transfer care to a provider who can bill for services.

We believe that nurse practitioners have a significant role to play in the care of those who are at the end of life. We are encouraged that NHPCO also recognizes their importance and have included this issue on the national legislative agenda.

Sincerely,

Jan Malcolm Barry Baines MD,
State Commission Co-chairs

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APPENDIX 5

Patterns and Trends in Dying in Minnesota

Edward R. Ratner, MD, Department of Medicine, University of Minnesota

John W. Oswald, PhD, Center for Health Statistics, Minnesota Department of Health

Improving end of life care in Minnesota requires an understanding of how care is currently delivered. In addition to the qualitative description of the range and types of services available for those near the end of life the Commission sought quantitative data on the patterns and trends in care. In particular, the Commission sought information on populations in the state that may have greater than average difficulty in obtaining ideal end of life care.

The data below is the result of an analysis of death certificates for Minnesotans who died in Minnesota from 1989 – 1999, provided by the Minnesota Department of Health.

The number of deaths in Minnesota in 1999, the most recent year for which full data is available, was 38,538. Of these, 409 (1.1%) were under 1 year of age, 424 (1.1%) were between 1 and 19 years of age, and 30,717 (79.8%) were 65 years or older. In the latter age group, 13,227 (or 34.4% of total deaths) were 85 years or older.

The death rate for Minnesota in 1999 was 807 per 100,000, or just over 0.8% of the population.

From 1998 to 1999, there was an increase in both the absolute number of deaths in Minnesota (up 3.6%) and the death rate (up 2.5%).

Three disease categories – heart, cerebrovascular, and cancer – accounted for two-thirds of all deaths in Minnesota. Violent deaths (including suicide, homicide and unintentional injury) occurred among 2,449 Minnesotans in 1999, or 6.4% of deaths.

The Minnesota Commission to Improve End of Life Care recognized that a majority of individuals with serious illness prefer to receive end of life care in their place of residence. Death certificates define the location of death as hospital, nursing home, residence, or other. The Commission sought to determine if there is variation in the rate of death at home (i.e., variation over time, across geographic regions, and in defined sub-populations).

The rate of deaths at home in Minnesota rose from 17.3% (5715/32978) in 1989 to 21.0% (7804/37092) in 1999.

Figure 1. Deaths at Home in Minnesota 1989-1999 (100% sample)

The rates of death occurring at home in 1999 differed considerably across the 87 counties in Minnesota. See Table 1. These ranged from 8.3% in Rock County to 34.1% in Clay County. Remarkable differences exist even among similar sized counties and within the seven Twin Cities metropolitan-area counties.

There was evidence of a trend relating the number of deaths in a county to the rate of death at home. Counties with smaller numbers of total deaths in 1999 had relatively fewer deaths at home compared to counties with more deaths (r = 0.187, p< .09). This trend is illustrated in Figure 3.

Figure 3. Deaths in Minnesota Counties, 1999, by quintile of county size, as defined by number of deaths in county (n=37,092)

Rates of death at home across racial groups did not vary significantly. Rates were slightly higher among communities of color compared to the white, non-Hispanic population.

Individuals born in the United States and territories were found to have a higher rate of death at home compared to immigrants, 21.2% versus 18.9%, respectively. This difference is primarily accounted for by higher rates of death in nursing homes among immigrants. Rates of deaths in the hospital between the two groups were 30.4% and 29.8%, respectively.

A variety of organizations have recommended that the site of death might be a marker for quality of end of life care (Journal of American Geriatrics Society, Volume 45, 526-527, 1997). This study of patterns of care at the end of life in Minnesota show the value of such a marker.

In Minnesota, the rate of death at home went up by about four percentage points from 1989 to 1999. In absolute terms, this was an increase of 2089 deaths at home, or an approximately 37% relative increase in the number of deaths at home. This represents a meaningful increase in the demand for home-based resources for end of life care.

Notably, half of the increase in rate of death at home occurred over three years in the middle of this 11-year period (1993-1995). This might be attributed to the creation or focused expansion of home-based end of life services during those three years. For example, if several new hospice programs opened in 1993, rates of death at home could have increased for several years and then stabilized as the previously unmet demand for home-based services was fulfilled.

There is a remarkable four-fold difference in the rates of death at home across counties in Minnesota. Even in the seven-county metropolitan area, there is a 50% difference in home death rates across counties. These differences are unlikely to be related to differences in causes of death or patient preferences, given the relative ethnic homogeneity of the Minnesota population across the state. Possible reasons include geographic variation in access to or quality of home-based health care and home hospice services, as well as variation in the attitudes of physicians and other health care providers.

Immigrant populations in Minnesota have a lower rate of death at home compared to the native born population. The reasons for this are uncertain, but may include differences in patient preference, access to family caregivers, or financial ability to organize care at home versus in a government funded nursing home.

It is notable that among individuals of African-American, Native American, and Asian communities, rates of death at home are slightly higher than that for the white population. One possible explanation is that these minority groups have greater access to family members who can and will provide home based caregiving at the end of life. An important and currently unanswered question is whether the usage rate for such formal home-based health services as home care agencies or hospice programs, differs among racial groups. It is possible that minority groups are underserved by our health care system, despite similar at-home death rates compared to the white majority.

The findings described above suggest the need for follow-up analyses. Such studies could help to: (1) determine the causes for variation in rates of death at home; (2) develop targeted interventions to raise rates; and (3) monitor changes in these rates over time as a way of assessing the long-term impact of the recommendations of the Commission on End of Life Care.