Hospitals, skilled nursing facilities, clinics and home care agencies have varied standards and expectations regarding the care of someone who is dying. In Minnesota and the rest of the nation, end of life care across health care settings is inconsistent. A patient in hospital X might receive excellent pain management, spiritual care, and family support, while a patient in hospital Y receives mediocre pain management and no other support services. The one exception to this inconsistency is hospice care, which is regulated at both the state and federal level. Hospice programs follow a prescribed list of care standards including expert symptom management, interdisciplinary care for spiritual and personal/family needs, and other support services.

The Commission believes that a high quality level of care should be established for end of life patients regardless of the setting in which they receive their care. Rather than suggesting specific standards for each health care facility or agency, the Commission decided to create a framework of care that could be used by health care providers, patients, and families alike. These Guiding Principles emerged through small and large group discussion. The principles were based on the following premises:

• Each principle reflects reasonable expectations that every Minnesotan should have regarding participation in care decisions, pain and symptom assessments, treatment of undesirable symptoms, and grief and bereavement care.

• The principles mirror a reasonable level of care that can be expected of a concerned, caring, and sensitive health care system. The Guiding Principles are written to be appropriate for health care systems of every size, scope, and location.

The Guiding Principles represent a synthesis of resources. They include hospice standards of care from the National Hospice and Palliative Care Organization (NHPCO), palliative care precepts developed through the Last Acts organization, the Seven Promises of Americans for Better Care of the Dying, Joint Commission standards on pain management, and other resources. Each principle is written both from the perspective of the health care system and from the perspective of people facing the end of life along with their loved ones. The principles are preceded by two inclusive statements, which were written to reflect the intention of the Commission that the Guiding Principles apply to all patients in all settings.

The Five Guiding Principles for End of Life Care appear in entirety below.

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.

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

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

Individuals and their families can expect:

• To be informed of choices and options, to be listened to with compassion, and to participate in decisions about care

• To have questions answered in a way that can be understood

• To have a written plan of care with specified health care directives respected.

To facilitate these preferences, health care providers (such as physicians, nurses, hospitals, social workers, nursing homes, hospices, home care agencies, and other health care providers and organizations) should:

• Ask about goals and preferences

• Include individuals and their loved ones in the care decision process, whenever possible

• Provide assistance and resources to formulate advance care plans

• Honor written health care directives

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

Individuals and their families can expect:

• Reports of pain and other symptoms to be believed

• Informed, competent, and compassionate pain and other symptom relief

• Urgent treatment of such severe symptoms as pain and/or breathlessness

Providers should:

• Use available tools to assess pain and believe reports of distress

• Make reasonable efforts to anticipate, prevent, and relieve undesirable symptoms

• Treat severe symptoms immediately

Individuals and their families can expect:

• To be asked about and offered relief of emotional, spiritual, and personal suffering

• Respect for cultural and religious preferences

Providers should:

• Ask about emotional, spiritual, and personal suffering

• Offer the help of interdisciplinary and/or community resources

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

Individuals and their families can expect:

• To be prepared for changes that are likely to occur in the course of an illness

• A plan to be in place for managing anticipated events

• To be informed about the costs of treatments and care

Providers should:

• Provide honest information on what is likely to happen in the course of an illness

• Provide guidance in planning how to handle predictable events

• Identify patients who are likely to die from their current illness and make a plan congruent with that outcome

5. Grieving will be acknowledged.

Families can expect:

• Compassionate acknowledgment of loss in a quiet and safe place

• To be with the deceased loved one as long as needed/desired

• Compassionate recognition that grieving takes time

• Acknowledgement that grief and loss can begin prior to death and may continue for longer than "expected"

• Understanding that every death and every family member’s response to that loss is unique

• To receive a minimum standard of bereavement follow-up after the death.

Providers should:

• Provide a quiet and safe place for families to grieve

• Accommodate family wishes to be with the deceased loved one

• Acknowledge that grieving is a unique process with a variable time course

• Offer options for support for long-term grieving

• Acknowledge that grief and loss begin prior to death and may continue longer than "expected"

• Provide an accepted standard of bereavement follow-up after the death

The Guiding Principles define the best practices in end of life care. The public, health care providers, health care organizations, and community organizations must be engaged to promote awareness, support, and commitment to these principles. The recommendations put forth by the Commission will identify ways to close the gap between current knowledge and the best practice in end of life care.