By Jan K. Malcolm

Minnesota Commissioner of Health

Launching a policy discussion about any end of life issue is not an easy assignment.

The task is complicated, at the outset, by cultural norms that serve to discourage open discussion about this aspect of the human experience, by our lack of a common language and forum for discussing end of life issues, and by increasingly varied attitudes and beliefs about death and dying in a society marked by increasing cultural diversity.

The idea of providing appropriate comfort (palliative) care at the end of life also represents a departure from the underlying priorities and philosophy of our medical care system. In the ethos of medicine, the focus is on conquering – or at least controlling – the illness, and "losing" the patient tends to be regarded as a form of failure.

Despite these obstacles, we clearly need to look at how we go about providing care to people who are nearing the end of life. There is, first of all, a clear disconnect between what people want and what the system is providing. When asked, most people say they would prefer to spend their last days being cared for in their own homes, but most of the time that’s not what the system provides. Three out of four Minnesotans currently die in a hospital, a nursing home, or some other institutional setting.

We’re also currently devoting a lot of financial resources to end of life care, and it’s not clear that the money is being well spent. Right now, one health care dollar out of every 10 goes to provide care during the last six months of life. Often, those resources are used to support heroic but futile efforts to preserve life – efforts that often actually diminish the patient’s quality of life during those last precious months.

Changing demographics have heightened the urgency of addressing end of life care issues here in Minnesota. Our population is getting older, as well as more culturally diverse. By the year 2030, one Minnesotan out of every four will be over the age of 65. By 2050, Minnesota will be home to quarter of a million people over the age of 85, compared with about 90,000 today. Much of this growth will take place in our state’s minority populations and communities of color. By 2025, the number of people over age 65 will increase by 478 percent in the state’s African-American community, by 470 percent in the Asian-American community, and 769 percent in the Hispanic community.

In May 2000, our state’s health care and public health communities took an important step forward in addressing end of life care issues with the formation of the Minnesota Commission on End of Life Care. The Commission was a collaborative project of the Minnesota Department of Health and the Partnership to Improve End of Life Care, a private-sector group that includes Allina Health System, Blue Cross Blue Shield of Minnesota, Fairview Health Service, and HealthPartners. Organizations taking part in the project included health care provider groups, professional associations, advocacy groups, faith communities, state agencies, education advocates, and the Minnesota Legislature.

The Commission was given a broad charge and an ambitious timeline. The group has examined end of life issues, including the impact of current regulatory policies that care, and the need for educating health care providers and the public alike.

The results of the Commission’s work are contained in the following report. Obviously, a document like this one can never provide the final word on a set of issues as complex as those that surround end of life care, but this work represents a valuable beginning. We hope that our report will provide a valuable blueprint for reform – and for further exploration of end of life care issues. I want to offer my sincerest thanks to the Commission members for their work over the past eighteen months – and my enthusiastic encouragement to the many people in our community who must now play a role in putting these recommendations into action.