Beyond Medical Directives: The Power of Values

While advance care directives and medical orders are essential components of planning, they often focus narrowly on specific medical scenarios and interventions.

A values statement provides a broader, more holistic guide that helps decision-makers understand what matters most to a person when specific situations arise that weren't anticipated in formal documents.

Advance care planning researchers note that values statements significantly improve surrogate decision-makers' confidence and accuracy in making choices that align with the person's wishes.

The Stanford Letter Project demonstrates how simple values statements can powerfully guide medical care.

Core Elements of an Effective Values Statement

A comprehensive values statement typically addresses:

• Fundamental beliefs about meaning and purpose in life
• What constitutes quality of life and well-being
• Attitudes toward dependency and caregiving
• Cultural, spiritual, and religious considerations
• Views on medical interventions and risk-taking
• Priorities regarding location of care
• Relationships that must be preserved and honored

The Coalition for Compassionate Care offers structured templates for capturing these elements systematically.

The American Bar Association's tool kit includes detailed values assessment questionnaires.

The Process of Creating a Values Statement

Starting Early and Updating Regularly

Elder care specialists recommend beginning the values conversation well before cognitive changes make it difficult.

The Conversation Project provides "starter kits" for initiating these discussions at different life stages.

Unlike static legal documents, values statements benefit from regular review as experiences and priorities naturally evolve over time.

The National Institute on Aging recommends reassessing values after significant life events or health changes.

Conversation Approaches and Tools

Capturing authentic values requires thoughtful conversation techniques:

• Using story-based questions about past experiences
• Exploring reactions to others' healthcare situations
• Discussing hypothetical scenarios from multiple angles
• Identifying "unacceptable outcomes" and non-negotiables
• Distinguishing between current preferences and enduring values

The Ariadne Labs Serious Illness Conversation Guide provides clinically-validated conversation prompts.

The Five Wishes document uses accessible language to explore personal, spiritual, and medical wishes together.

Moving Beyond Medical Preferences

Capturing Quality of Life Dimensions

Comprehensive values statements explore what makes life meaningful beyond medical care:

• Important daily routines and activities
• Necessary environmental elements (outdoors, quiet, music)
• Social connections that must be maintained
• Sensory experiences that bring comfort
• Balance between safety and freedom

The World Health Organization's Quality of Life Assessment identifies domains that contribute to well-being across cultures.

The Eden Alternative provides frameworks for preserving identity and meaning through care transitions.

Addressing Fears and Concerns

Effective values exploration acknowledges fears about the future:

• Concerns about burdening loved ones
• Fears of experiencing pain or distress
• Worries about losing dignity or independence
• Anxiety about specific medical interventions
• Concerns about financial implications of care

The Center to Advance Palliative Care provides conversation guides specifically addressing fears in serious illness. The Death over Dinner initiative creates comfortable settings for discussing difficult topics.

Structuring the Written Statement

Format and Documentation Considerations

Values statements range from highly structured documents to personal letters.

Effective formats include:

• Question-and-answer frameworks with specific scenarios
• Narrative statements describing ideal care situations
• Video recordings explaining key values in the person's own words
• Guided templates with standardized prompts and personal responses
• Letters addressed to future decision-makers

The Prepare for Your Care program offers evidence-based templates in multiple languages.

Digital legacy platforms provide secure storage for multimedia values expressions, including video recordings.

Integration with Legal Documents

To ensure values statements carry weight:

• Reference them in legal advance directives
• Provide copies to healthcare agents and providers
• Review consistency between values and specific medical orders
• Consider having witnesses or notarization
• Ensure accessibility during medical crises

The National POLST program provides guidance on aligning values statements with medical orders.

The National Hospice and Palliative Care Organization offers state-specific advice on legal integration.

Special Considerations for Dementia

Forward-Looking Statements

Given dementia's progressive nature, values statements should address:

• How preferences might change with cognitive changes
• Which values should remain constant despite changes
• When quality of life might outweigh longevity
• Triggers for transitions between care settings
• Guidance for balancing past wishes with current comfort

The Dementia Society specializes in forward-looking values planning for cognitive conditions.

Compassion & Choices offers dementia-specific advance directive supplements.

Capturing Evolving Preferences

Research on dementia care shows that preferences often evolve with the condition.

The Alzheimer's Association recommends approaches for capturing changing values as the disease progresses.

Cultural and Spiritual Dimensions

Honoring Cultural Traditions

Values statements should reflect cultural backgrounds that influence care preferences:

• Traditional practices around illness and healing
• Family role expectations in decision-making
• Cultural attitudes toward discussing future planning
• Community resources and support systems
• Language considerations in care settings

The National Center for Cultural Competence provides cultural frameworks for healthcare planning.

The Family Caregiver Alliance's multicultural resources offer culture-specific guidance.

Incorporating Spiritual Beliefs

For many, spiritual dimensions are central to care values:

• Religious rituals that must be accommodated
• Spiritual advisors to be consulted
• Beliefs about suffering, healing, and intervention
• End-of-life spiritual preparations
• Faith community involvement in care

Healthcare Chaplaincy Network provides interfaith resources for spiritual care planning.

The George Washington Institute for Spirituality and Health offers assessment tools for spiritual values.

Implementing Values in Real-World Settings

Communicating with Healthcare Providers

Even well-crafted values statements require effective communication:

• Discussing values during routine healthcare visits
• Including values documents in medical records
• Reviewing values during care transitions
• Using values language in treatment discussions
• Resolving conflicts between values and recommended care

The Patient Advocate Foundation provides communication guides for discussing personal values with medical teams. The Agency for Healthcare Research and Quality offers provider-facing tools for incorporating patient values.

By developing comprehensive values statements early and updating them regularly, individuals can create a powerful guide that helps future decision-makers provide care that truly reflects what matters most, even when specific situations couldn't be anticipated.