Minnesota State Commission on End of Life Care: Vision

Compassionate and competent care will be available, understandable, and accessible to all who are at the end of life. The diversity of cultural, spiritual, and religious beliefs will be treated with respect and sensitivity.

Due to the widespread and complex issues involved in improving care for people who are living with life-limiting conditions or who are dying, the Minnesota Commissioner of Health and the Minnesota Partnership to Improve End of Life Care collaborated to form the Minnesota State Commission on End of Life Care. The work of the Commission has focused on identifying the important issues and barriers to care, prioritizing those issues, and making recommendations for improvement. Recommendations from this report will help public and private policy-makers formulate improvements that will ensure all Minnesotans receive the best care possible at the end of their lives.

The Commission is made up of representatives from twenty-six organizations from the public and private sector as well as additional consultants. It has been staffed and financially supported by a grant from the Robert Wood Johnson Foundation Community-State Partnerships to Improve End of Life Care initiative.

The Commission focused on the following four categories of end of life care issues:

Recognizing the need to create a framework for care at the end of life, the Commission developed the following guiding principles:

For those facing end of life care issues for themselves, their families, or their loved ones:

1. Preference for treatment and care will be discussed and respected.

2. Every reasonable effort will be made to relieve pain and other undesirable physical symptoms.

3. Emotional, spiritual, and personal suffering will be identified, addressed, and discussed.

4. Appropriate and realistic information will be provided regarding prognosis and the expected course of the events preceding death.

5. Grieving will be acknowledged.

Providers and communities should partner to ensure access to end of life services in Minnesota, with special attention to rural communities, minority and immigrant communities, children, and other potentially underserved populations.

Rural Communities

• Create education and development opportunities to strengthen hospice infrastructure

• Fund development of hospice programs in unserved areas

• Educate the public on end of life services and resources through locally based initiatives

• Educate physicians, nurses, and other health care personnel in hospice and palliative care

Minority and Immigrant Communities

• Develop informational materials for minority and immigrant communities

• Train medical interpreters and health care professionals who service these communities

• Develop, implement, and evaluate a cultural assessment tool for health care providers

Children / Pediatric Communities

• Develop a central resource for pediatric end of life care information

Community organizations, educational institutions and health care organizations will promote and support education in the areas outlined by the Five Guiding Principles.

Community Organizations and the Public

• Educate organizations that have access to a network or membership base (e.g. faith-based and other organizations) on such end of life topics as advance care planning, pain and symptom control, and hospice and palliative care

• Identify, develop, and maintain a catalogue of materials on end of life topics

• Distribute the Five Guiding Principles

Health Care Organizations / Practicing Professionals

• Support of the Five Guiding Principles by Minnesota health care providers

• Encourage hospice and palliative care certification for physicians, nurses, and other health care professionals

Educational Institutions / Undergraduate and Graduate Education

• Include curriculum based on the Five Guiding Principles in academic programming

• Fund further end of life care curriculum development and implementation through public and private sources

Public and private policy makers will promote and implement improvements in the areas of: 1) funding for residential end of life services; 2) out-of-hospital end of life care by emergency medical personnel; and 3) end of life care decisions for those who no longer have decision-making capacity and who have no other clearly identifiable decision-maker (adult orphans) or family.

Residential End of Life Services

• Pursue funding from new or reallocated resources to study removal of reimbursement barriers to hospice services, end of life services within assisted living, and end of life services within skilled nursing facilities

• Promote hospice and long-term care partnerships to explore alternative and innovative residential programs for end of life care

Out-of-Hospital End of Life Care by Emergency Medical Services (EMS)

• Develop standard and simplified vocabulary, policies, and portability for physician orders regarding cardio-pulmonary resuscitation (CPR) and comfort care to enhance understanding and implementation by EMS personnel responding to 911 calls at private residences and nursing homes

• Educate public and health professionals regarding use of out-of-hospital CPR and comfort care orders

End of Life Care Decision Making for Persons without Designated Decision Makers (Adult Orphans)

• Develop procedures within the health care systems (hospitals, clinics, skilled nursing facilities, etc.) to identify people who do not have responsible family members or other resources to make surrogate health care decisions

• Develop a system to assist those who do not have family or surrogate health care decision-makers to help them identify a health care agent (surrogate) or execute a health care directive

• Explore options for an expedited decision-making process that recognizes the need to make emergency comfort care or palliative care treatment decisions

The Commission has identified issues and made recommendations and strategies that will be the first step in improving end of life care. Minnesota now has a framework on which to build a better kind of care. However, the work of the Commission will only inspire change if leaders in the public and private sector support the recommendations and commit to putting them into action within their own organizations.

Next steps also involve engaging the public in understanding that they have choices and options for care at the end of life. This type of change must happen both on a personal and family level as well as a community level. For all who read this report and ask, "What can we do?" remember the words of Mahatma Gandhi: "We must become the change we want to see."