Download a copy of the Unified Statement here.
A Unified Statement of Values on Palliative Care
This statement of values is based upon the Five Guiding Principles for End of Life Care developed by the Minnesota Palliative Care Partnership. It is intended to be a tool to identify, promote, and assist good palliative care practices in Hawai`i. It was developed for use by a wide range of individuals and organizations that provide care to chronically, seriously, and terminally ill people.
They include:
- Family and friends of chronically, seriously, and terminally ill people
- Professionals and paraprofessionals who work with chronically, seriously, and terminally ill people
- Educators
- Attorneys, guardianship programs, and courts
- Health care facilities, including acute, long-term care, and rehabilitation facilities
- Home and community-based services
- Disease specific organizations
- Consumer and advocacy organizations
- Insurers
- State and federal government, including those arms of government that set and enforce standards for services and pharmaceuticals
- Any other entities called on to provide care to chronically, seriously, and terminally ill people.
All these entities are facing a growing demand to provide high-quality pain and symptom management and will need to develop their own standards and policies on pain and symptom management. This statement of values is intended to be a starting point in developing such standards.
The Five Guiding Principles for Palliative Care
1. The patient will guide preference for treatment and care.
Individuals and their families* can expect:
- To be informed of all reasonable choices and options
- To participate and to be listened to and respected in discussions about treatment and care decisions
- To have questions concerning care answered in an understandable manner
- To have a written plan of care, with specified health care directives respected
Providers should:
- Ask about goals and preferences
- Include the individual and family in the decision-making process. Work with the individual and family to determine who serves as the primary decision-maker, as appropriate.
- Promote open and honest conversation regarding health care choices
- Provide information and support options consistent with the individual and family’s cultural beliefs and practices
- Promote the clarification of individual values for living in the face of a life-threatening illness (e.g., where to live, type of care, likes and dislikes, etc.)
- Provide assistance and resources to prepare advance health care directives
- Document preferences and store them in a readily retrievable manner
- Honor written and verbal health care directives
* Family may include any person deemed significant or beloved by the chronically, seriously, or terminally ill individual, and may or may not be related by blood or marriage.
2. Every effort will be made to relieve pain and other distressing symptoms.
Individuals and their families can expect:
- Reports of pain and other symptoms to be believed
- Informed, competent, culturally specific, and compassionate relief of pain and other symptoms, including urgent treatment for severe symptoms such as intense pain and/or breathlessness
Providers should:
- Use available tools to assess pain on a regular basis
- Believe reports of distress, and validate the individual’s pain and symptom management beliefs. (Validate that you have heard the individual’s report and are taking steps to manage them?)
- Treat undesirable symptoms immediately, and make reasonable efforts to anticipate and prevent undesirable symptoms
- Develop and implement interdisciplinary competencies in pain and symptom management
3. Every effort will be made to relieve emotional, spiritual, and personal suffering.
- To be asked about their suffering
- To be offered relief for their suffering
Providers should:
- Use available tools to assess pain on a regular basis
- To have cultural and religious beliefs and preferences honored
Providers should:
- Offer and provide information and support in a manner consistent with the individual’s and family’s cultural beliefs and practices
- Link the individual and family to appropriate health, social, psychological, cultural, and spiritual resources
4. Appropriate and realistic information will be provided regarding expected course of illness and prognosis.
Individuals and their families can expect:
- To have an opportunity to create a plan for managing anticipated needs and events (e.g., physical, psychosocial, emotional, spiritual)
- To have a choice regarding disclosure of information
- To be informed about and prepared for changes that are likely to occur
Providers should:
- Provide appropriate and realistic information regarding expected course of illness and prognosis
- Provide honest information on what is likely to happen in the course of an illness
- Allocate sufficient resources to promote dialogue about the implications and consequences of care decisions
5. Providers should provide palliative care services across the continuum of illness (acute and chronic conditions, end-of-life, and bereavement).
Individuals and families can expect:
- To have options for care discussed and tailored to the needs of the individual and his/her family
- To have care that is coordinated and individual/family-centered
Providers should:
- Recognize the individual and family as a single unit of care
- Provide a dedicated interdisciplinary palliative care team to meet the needs of those facing a life-threatening illness
- Provide palliative care services across the continuum (acute and chronic conditions, as well as end-of-life)