Advance care planning (ACP) is one of the most important yet sensitive responsibilities that adult family home (AFH) providers face. It involves helping residents articulate their values, preferences, and wishes regarding future medical treatment, particularly when they may no longer be able to communicate those decisions themselves. For AFH providers, facilitating advance care planning requires a combination of clinical knowledge, communication skills, cultural sensitivity, and legal awareness. When done well, advance care planning ensures that residents receive care that aligns with their personal values and reduces the burden of decision-making on families during emotionally difficult times.
The National Institute on Aging (NIA) defines advance care planning as a process that involves learning about the types of decisions that might need to be made, thinking about and discussing those decisions ahead of time, and documenting preferences in legally recognized forms. Research published in the Journal of the American Medical Association (JAMA) consistently demonstrates that advance care planning improves end-of-life care quality, reduces unwanted hospitalizations, decreases family distress, and increases the likelihood that individuals receive care consistent with their stated preferences.
Understanding Advance Care Planning
What Advance Care Planning Encompasses
Advance care planning is far more than simply completing legal paperwork. It is an ongoing process of reflection, discussion, and documentation that includes exploring the resident's values, beliefs, and priorities regarding quality of life and medical treatment, discussing goals of care with the resident, family members, and healthcare providers, identifying a healthcare proxy or durable power of attorney for healthcare decisions, documenting preferences through legally recognized advance directives, reviewing and updating documents as health status or preferences change, and communicating documented preferences to all relevant caregivers and healthcare providers.
Why Advance Care Planning Matters in Adult Family Homes
Adult family homes serve populations with a high prevalence of chronic, progressive, and life-limiting conditions. Many residents have conditions such as dementia, heart failure, chronic obstructive pulmonary disease, or cancer that will ultimately require end-of-life care decisions. Without advance care planning, these decisions may fall to family members or healthcare providers who may not know the resident's wishes, leading to care that conflicts with the resident's values.
The Center to Advance Palliative Care (CAPC) emphasizes that advance care planning should begin early in the care relationship, not just when death is imminent. For AFH providers, this means initiating advance care planning conversations as part of the admission process and revisiting these conversations regularly throughout the resident's stay.
Key Legal Documents
Advance Directives
Advance directives are legal documents that allow individuals to specify their healthcare preferences in advance of a situation where they cannot communicate for themselves. The two primary types of advance directives are living wills and durable powers of attorney for healthcare.
The American Bar Association (ABA) provides resources on advance directive laws, which vary by state. AFH providers must understand their state's specific requirements for advance directive execution, including witness and notarization requirements.
Living Wills
A living will is a written statement that specifies the types of medical treatments an individual does or does not want to receive in specific circumstances, typically when they are terminally ill, permanently unconscious, or in an end-stage condition. Living wills commonly address preferences regarding cardiopulmonary resuscitation (CPR), mechanical ventilation and life support, artificial nutrition and hydration through feeding tubes, dialysis, blood transfusions, and antibiotic treatment for life-threatening infections.
Living wills provide direct guidance to healthcare providers about the resident's treatment preferences. However, they cannot address every possible medical scenario, which is why they are most effective when combined with a designated healthcare proxy.
Durable Power of Attorney for Healthcare
A durable power of attorney for healthcare (also called a healthcare proxy or medical power of attorney) designates a trusted individual to make healthcare decisions on the resident's behalf when the resident is unable to make or communicate decisions themselves. The designated agent should be someone who understands the resident's values and wishes, is willing to advocate for those preferences, is available to make decisions when needed, and can handle the emotional weight of end-of-life decision-making.
The National Healthcare Decisions Day (NHDD) organization promotes awareness of the importance of designating a healthcare proxy and provides resources for facilitating these conversations.
POLST Forms
Physician Orders for Life-Sustaining Treatment (POLST) forms — known by various names in different states such as MOLST, MOST, or POST — are medical orders that translate a patient's advance care planning preferences into actionable medical instructions. Unlike advance directives, which are legal documents expressing wishes, POLST forms are medical orders signed by a physician or authorized healthcare provider that are immediately actionable by emergency responders and healthcare personnel.
The National POLST organization coordinates POLST programs across the United States. POLST forms typically address resuscitation preferences (CPR vs. DNR), level of medical intervention desired (comfort only, limited interventions, or full treatment), artificial nutrition preferences, and antibiotic use preferences.
POLST forms are particularly important for AFH residents because they travel with the resident between care settings, ensuring consistent treatment regardless of whether the resident is at home, in the hospital, or in transit.
Do Not Resuscitate (DNR) Orders
A Do Not Resuscitate order is a specific medical order instructing healthcare providers not to perform cardiopulmonary resuscitation if the resident's heart stops or they stop breathing. DNR orders must be signed by a physician and are based on the resident's informed decision or the decision of their healthcare proxy. AFH providers must understand that a DNR order applies only to resuscitation and does not affect other aspects of medical treatment or comfort care.
Facilitating Goals of Care Conversations
Creating a Supportive Environment
Goals of care conversations require a private, comfortable setting free from distractions. AFH providers should schedule adequate time for these discussions, ensure the resident is comfortable and alert, invite appropriate family members or the healthcare proxy as desired by the resident, approach the conversation with empathy and openness, and be prepared to have multiple conversations rather than trying to address everything at once.
Communication Techniques
Effective goals of care conversations use open-ended questions to explore the resident's values and priorities. Useful questions include asking what matters most to the resident in their daily life, what their understanding is of their current health situation, what concerns or fears they have about the future, whether there are treatments they would want or would not want, what a good day looks like for them, and what their hopes and worries are. The Conversation Project provides excellent resources and conversation guides that can help AFH providers facilitate these discussions.
Addressing Common Concerns
Residents and families often have concerns about advance care planning that can create barriers to productive conversations. Common concerns include fear that discussing end-of-life wishes will hasten death, worry about making the wrong decision, discomfort with discussing death and dying, confusion about the difference between various legal documents, concerns about losing control over medical decisions, and cultural or religious beliefs about end-of-life care.
AFH providers should address these concerns with patience, accurate information, and respect for the resident's and family's perspective.
Cultural Considerations
Respecting Cultural Diversity
Advance care planning is deeply influenced by cultural values, religious beliefs, and family structures. AFH providers must approach these conversations with cultural humility and an understanding that attitudes toward death, dying, medical treatment, and family decision-making vary significantly across cultures.
Some cultural considerations include some cultures prioritize family-based decision-making rather than individual autonomy, certain religious traditions have specific beliefs about life-sustaining treatment and the dying process, cultural norms may affect willingness to discuss death openly, language barriers may require professional interpretation services, and some cultures view advance directives as taboo or unnecessary.
The National Hospice and Palliative Care Organization (NHPCO) provides cultural competency resources that can help AFH providers navigate these sensitive conversations with respect and sensitivity.
Religious Considerations
Many residents' advance care planning decisions are informed by religious beliefs. AFH providers should be prepared to accommodate requests for spiritual or religious counsel during the planning process, understand that some faiths have specific positions on life-sustaining treatment, respect decisions that are based on religious beliefs even when they differ from medical recommendations, and facilitate access to clergy or spiritual advisors as requested.
Family Involvement
Engaging Family Members
Family members play a crucial role in advance care planning, both as sources of support for the resident and as potential decision-makers through healthcare proxy designation. AFH providers should encourage family participation while respecting the resident's right to privacy and self-determination.
Best practices for family involvement include inviting family members to participate in goals of care conversations with the resident's permission, providing family members with educational resources about advance care planning, facilitating family meetings to discuss the resident's wishes and ensure shared understanding, addressing family disagreements with empathy and clear communication, and documenting family discussions and the resident's stated preferences.
Managing Family Conflict
Family disagreements about advance care planning are common and can be challenging for AFH providers. Conflicts may arise when family members disagree with the resident's stated preferences, different family members have conflicting views about appropriate care, cultural or generational differences affect perspectives on end-of-life care, or family dynamics create barriers to productive communication.
AFH providers can help manage conflict by focusing on the resident's expressed wishes as the primary guide, facilitating open communication among family members, suggesting family meetings mediated by a social worker or chaplain, providing clear information about the resident's legal right to make their own decisions, and documenting the resident's stated preferences to provide clarity during future decision-making.
Legal Requirements and Provider Responsibilities
State-Specific Regulations
Advance directive laws vary significantly by state. AFH providers must understand their state's requirements regarding who can execute advance directives, including age and capacity requirements, witness requirements such as how many witnesses are needed and whether family members can serve, notarization requirements, provider obligations when presented with advance directives, protections for providers who follow advance directives in good faith, and procedures when advance directives are not available.
The National Conference of State Legislatures (NCSL) maintains information about advance directive laws in each state.
Provider Obligations
AFH providers have specific obligations regarding advance care planning including inquiring about existing advance directives during the admission process, providing information about the resident's right to create advance directives, assisting residents in accessing advance directive forms and resources, ensuring advance directives are maintained in the resident's file and accessible to all caregivers, communicating advance directive information during care transitions, and following documented preferences when making care decisions.
Documentation and Record Keeping
Proper documentation of advance care planning activities is essential for both compliance and care quality. Records should include copies of all executed advance directives, POLST forms, and DNR orders, documentation of goals of care conversations including participants, topics discussed, and decisions reached, records of advance directive reviews and updates, documentation of communications with healthcare providers about advance care preferences, and contact information for the designated healthcare proxy.
Integrating Advance Care Plans into Daily Operations
Staff Education
All caregivers should understand each resident's advance care preferences and know how to implement them in practice. Training should cover understanding and interpreting advance directives and POLST forms, responding appropriately to medical emergencies based on documented preferences, communicating with emergency services about DNR orders and POLST instructions, recognizing when to contact the healthcare proxy for decisions, and documentation requirements for end-of-life care.
Regular Review and Updates
Advance care plans should be reviewed and potentially updated whenever a resident's health status changes significantly, after a hospitalization or major medical event, at least annually as part of the care plan review process, when the resident or family requests a review, and when changes in the resident's cognitive status affect decision-making capacity.
Technology Support
Electronic health record systems like AFH Manager can help providers manage advance care planning documentation by maintaining easily accessible digital copies of advance directives, setting reminders for periodic reviews, tracking goals of care conversations, ensuring advance directive information is available during care transitions, and generating reports for regulatory compliance.
Conclusion
Advance care planning is a deeply personal process that honors residents' autonomy and ensures their end-of-life care reflects their values and wishes. For AFH providers, facilitating this process requires a combination of clinical knowledge, communication skills, cultural sensitivity, and administrative diligence. By approaching advance care planning as an ongoing conversation rather than a one-time paperwork exercise, providers can help residents and families navigate difficult decisions with confidence and peace of mind. The result is care that truly reflects each resident's individual wishes and values — the hallmark of person-centered care in adult family homes.
Separate wishes, legal documents, and actionable medical orders
Record the resident's goals and preferred decision-makers, verify authority and document validity, distinguish an advance directive from current treatment orders, identify where originals and copies are stored, define what staff carry during transfer, and reconcile contradictions with the clinician and qualified legal guidance. Revisit after hospitalization, diagnosis, capacity, representative, or goal changes. The palliative care integration guide explains the related comfort, symptom, clinical coordination, and family communication workflow.
Frequently asked questions
Does a power of attorney automatically make every healthcare decision?
No. Authority depends on the document, activation conditions, decision type, resident capacity, and state law. Verify the current instrument and obtain qualified guidance when scope is uncertain.
Is an advance directive the same as a medical order?
No. An advance directive expresses wishes and names decision-makers; emergency and treatment teams may require current clinician-signed orders in the applicable form. Reconcile the records rather than assuming one replaces the other.
When should advance care documents be reviewed?
Review on the required schedule and after hospitalization, serious diagnosis, functional decline, capacity change, new representative, relationship change, resident request, or conflict between wishes and current orders.
Keep critical wishes current and reachable
Explore AFH Manager with fictional residents to evaluate restricted directives, representative authority, clinical orders, emergency packets, review dates, and care-plan alignment.