Background, Statistics and History

INTRODUCTION

If you ask people who live in Minnesota where they would like to receive care if they were dying, most would likely say, "I want to be at home." A 1999 national survey reported that over 80% of the respondents preferred end of life care at home. Contrary to these wishes, 75% of Minnesota deaths occur in institutional settings (National Hospice Foundation, 1999).

We face an array of complex problems in trying to bridge the gap between the care that people would like to receive when they are dying and what they actually get. We live in a society that is not comfortable talking about death. Our health professionals are not well trained in providing end of life care. Care at the end of life is often costly, inappropriate, and provided in such settings as intensive care units or emergency rooms. Our medical payment system is designed to reimburse for procedures, tests, surgeries, and hospitalizations aimed at curing disease rather than providing comfort when cure is no longer possible.

In order to address these issues, the Minnesota Commissioner of Health and the Minnesota Partnership to Improve End of Life Care joined to form the Minnesota Commission on End of Life Care. The Commission met for over a year and a half to study the barriers and challenges to providing high-quality, compassionate, and accessible care to people at the end of life.

One way to anticipate which populations are more likely to require end of life services is to examine the demographics of Minnesotans who have already died. The following data was collected from all death certificates filed with the Minnesota Department of Health for the year 1999 (the most recent year all records were available). See Appendix 5 for more detailed data.

80% of deaths occur in people over the age of 65. It is estimated that in the year 2030, one out of every four Minnesotans will be over age 65, compared to one out of every eight today. By 2050 250,000 Minnesotans will be over age 85, compared to 90,000 today (MN DHS, 1998). 1999 the ages of people who died were:

In 1999 heart disease, cerebrovascular disease, and cancer accounted for two-thirds of all deaths in Minnesota. The leading cause of death in 1999 was major cardiovascular disease, which accounted for 35.6% of all deaths. The table below lists the primary causes of death in Minnesota.

Death certificates indicate whether death occurred at a hospital, nursing home, residence, or other location. The "hospital" indicator includes those individuals who were determined to be dead on arrival, those who died in the emergency room, and those who died during an inpatient hospital stay. "Nursing home" includes both deaths among residents of the nursing home. The "other" category includes psychiatric facilities, prisons, and residential hospices.

The rates of death at home varied considerably across the eighty-seven counties in Minnesota. The range of rates of home death in 1999 was 8.3% in Rock County to 34.1% in Clay County. Despite wide variation across all counties and even among similar sized counties, a trend emerges related to the number of deaths in a county and 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. Even within the seven-county Twin Cities metropolitan area, rates of death at home varied considerably. These rates were:

In order to provide high quality end of life care to the populations that need it most, it is useful to examine where people die, what they die of and where they live. The Commission used the 1999 data offered here as a reference to determine where the needs in end of life care are, and the gaps that exist in the current distribution of services.

Minnesota has a large number of facilities, providers, and institutions that deliver care. The Department of Health’s web site (http://www.health.state.mn.us) details the variety of the state’s facilities:

Palliative care involves treatment and care that is focused on providing comfort by relieving pain and other symptoms. Only two hospitals in Minnesota have formal, supported palliative care consult teams. Several other hospitals are in the process of developing similar programs for their patients. In addition to the hospital palliative care teams, four home-based health care programs support palliative care services or consultations.

Hospices are currently the most widely available programs designed specifically to care for people who are dying. Hospice services are available throughout Minnesota and paid for through the Hospice Medicare Benefit, Medicaid, and private insurers. In 1999 only 18% of Medicare patients who died in Minnesota received hospice services (GAO, 2000). While the Medicare Hospice Benefit and a majority of other similar hospice benefits are intended to pay for six months of hospice services, patients are often referred to hospice programs very late in their illnesses. In 1997 the median length of stay in a hospice program in Minnesota was thirty-four days, and 19% of admitted patients died within seven days of their enrollment (MHO, 1999). Hospice programs are typically home-based programs designed to help patients die in their homes. However, five licensed residential hospice facilities in Minnesota provide hospice care in a home-like setting.

Minnesota has three medical schools: the Mayo Medical School, the University of Minnesota Medical School – Twin Cities, and the University of Minnesota - Duluth School of Medicine. In addition, Minnesota has approximately sixteen universities that offer baccalaureate nursing degrees and several others that offer associate degrees in nursing. The University of Minnesota, Twin Cities has the only college of pharmacy in the state. A multitude of colleges and universities offer social work and psychology programs, however curriculum addressing end of life care is varied, often fragmented, and in some cases absent.

Practicing health care professionals who are certified in hospice and palliative medicine offer an expertise that can be beneficial to patients at the end of life. A national testing system provides certification for physicians and nurses and assures competency in providing comfort care. Of the 15,000 registered physicians in Minnesota twenty-one are currently certified in palliative care. Of the 58,000 registered nurses in the state, 159 have palliative care certification.

Minnesota has one of the most advanced health care directive laws in the country. Revised in 1998, the law allows a person either to write down their personal care wishes in advance or choose someone who can make health care decisions for them at the end of life (most often referred to as the "health care agent"). Despite the progressive nature of Minnesota’s health care directive law, few people actually complete a health care directive. A 1996 study of Minnesota hospitals, nursing homes, and home care agencies estimated that fewer than 10% of patients admitted for care had a completed an advance directive (Stum & Ross,1996).

Data on the cost of caring for people at the end of life is scarce. A 1996 national study estimated that end of life care consumes 27% of the Medicare budget (Emanuel, 1996). Payments for patients in the last six months of life totaled $103,525,666 for Minnesota Medicaid patients in 1999. The average payment for a patient’s final hospitalization was $13,446 (DHS Raw Data, 2000). Medicare data show that 23.1% of Medicare patients in the Minneapolis region experienced intensive care during the last six months of life (Dartmouth Atlas, 1998).

Cost of care includes expenses incurred by families. Nearly one-half of all bankruptcies filed in the United States by people over the age of 65 are attributed to medical reasons, (Warren et al., 2000). A 1999 study estimates that caregivers lose approximately $659,000 in wages and benefits and that informal caregiving costs American businesses up to $11.29 billion annually (MetLife, 2000).

All major insurance plans in Minnesota include a hospice benefit. While coverage under this benefit usually mirrors coverage under the Medicare Hospice Benefit, plans vary in scope and eligibility. Hospice care is also covered under Medicaid and the state-supported insurance plan Minnesota Care. Current insurance plans do not cover palliative care consultation or follow up unless it is done by a physician or occurs under the skilled home care benefit.

Minnesota supports out-of-hospital "Do Not Resuscitate" (DNR) physicians orders. DNR orders help prevent unwanted cardio-pulmonary resuscitation by paramedics and emergency transport personnel. While Minnesota supports DNR orders, the implementation policies and procedures vary among the different ambulance transport systems. Currently, Minnesota has about 300 ambulance transport systems.

The Commission was co-sponsored by the Minnesota Department of Health and Minnesota Partnership to Improve End of Life Care with funding from the Robert Wood Johnson Foundation. Each co-sponsoring organization brought a unique perspective to end of life care leading to creative dialogue, unique approaches to problem solving, and a wider sphere of influence.

The Minnesota Department of Health (MDH) is the state's leading public health agency, legally charged with "protecting, maintaining, and improving" the health of the state's citizens. Major program areas at MDH include the prevention and control of chronic and infectious diseases, health economics and health care policy, elimination of health hazards in the environment, maternal and child health, and implementation of strategies for promoting healthy behavior choices.

In addition, MDH is responsible for regulating managed care organizations, hospitals, nursing homes and other long term care facilities, home care providers, and hospice providers. MDH maintains programs to address the health issues surrounding Minnesota's refugee and immigrant populations. During the last legislative session, MDH received a two-year, $14 million appropriation to address disparities in health status that affect the state's minority communities and populations of color.

The Minnesota Partnership to Improve End of Life Care was founded in 1999 by Allina Health System, HealthPartners, and Fairview Health Service with Blue Cross Blue Shield of Minnesota. Under the financial management of the Metropolitan Area Agency on Aging, and with funding from the Robert Wood Johnson Foundation, the Partnership has worked to raise the standards of end of life care.

During its first two years of activities, the Partnership focused on three areas:

Focus Area 1: Improving public policy and increasing public awareness on end of life issues

Focus Area 2: Improving and promoting education for health professional students, practicing professionals, and consumers

Focus Area 3: Improving reimbursement for end of life care

The Commission on End of Life Care consisted of representatives nominated from a variety of organizations, and jointly appointed by Commissioner of Health Jan Malcolm and the Minnesota Partnership to Improve End of Life Care (for complete list of participating organizations and their representatives see Appendix 1). The Commission was established as an eighteen-month, time-limited project beginning in May 2000. The meetings were lead and staffed by both the Partnership and the Department of Health. Commission meeting minutes can be found at the Minnesota Partnership to Improve End of Life Care website - www.minnesotapartnership.org.

All Commission work and recommendations were based on a consensus model of decision-making. During the first meeting, Commission representatives used consensus voting to identify and validate the following issues (listed below).

End of Life Issues

• Barriers to dying at home

• Late enrollment into hospice care

• Inconsistent institutional care

• Inconsistent emergency transportation standards

• Lack of certified palliative care health professionals

• Lack of end of life education for health professionals

• Loss of caregiver services through state programs with enrollment into hospice

• Inconsistent end of life data

• Expense of end of life care

At subsequent meetings the problems listed in the box above were consolidated into four issue areas. Sub-committees then formed to work on the problems unique to each issue area, identify specific barriers, and make recommendations for improvement.

Although a variety of concerns were discussed among sub-committees in each issue area, not all of them were brought forward for recommendation. As Commission co-chair Dr. Barry Baines said, "We can do anything. We can’t do everything." While all of the issues raised were considered important and worthy of consideration, the Commission was forced to focus on the issues that were within the scope of the Commission’s directive and influence. Issues identified by the Commission but not brought forward for recommendation are listed in Appendix 2. The following criteria helped Commission members determine which issues to focus on:

Criteria 1

Is the problem within the scope of the state and the organizations represented to make changes? For example, issues regarding federal legislation and federal regulation, such as Medicare barriers were considered outside the scope of the Commission.

Criteria 2

Is the problem defined and documented well enough to make a concrete recommendation for improvement? For example, inability of patients to obtain opioids at some neighborhood pharmacies could not be confirmed as a significant problem.

Criteria 3

Is the scope of the problem larger than end of life care? Issues such as the nursing shortage that encompasses the entire health care field were not pursued.

As part of the Commission work, the Minnesota Partnership to Improve End of Life Care conducted three projects to gather data for further information. The first project consisted of interviews with key informants from minority and immigrant communities about end of life issues. The second project involved four roundtable discussions on end of life care needs in communities outside the Twin Cities metro area. Documentation of these two projects are found in the recommendation section of this report. In the third project, data from death certificates over the past ten years were analyzed to identify trends in diagnosis and place of death. Results of this project are printed under the "Minnesota’s death statistics" heading in this section and in Appendix 5.

The Commission would like to acknowledge the valuable assistance it received while conducting the three projects from members of the community who were not Commission representatives. In addition to project assistance, many individuals from a wide variety of organizations provided input and suggestions from sub-committee meeting attendance to offering advice on the issues. See appendix 3 for a list of people who assisted the Commission and staff.

The Minnesota Commission on End of Life Care was created because significant gaps exist for people who are facing the end of life. The Commission identified and prioritized the issues that cause the most significant barriers to accessing the best care. After analyzing interviews conducted by staff, data about the number of Minnesotans who die and the particulars of their deaths, and the composition of the health care system, the Commission arrived at recommendations for improving end of life care. The remainder of this document is a detailed listing of these recommendations and strategies for their implementation.