# Advance Care Planning and Goals of Care Conversations ## Introduction Advance care planning (ACP) is the process of understanding, reflecting on, and communicating preferences for future medical care. Despite its importance, fewer than 40% of adults have completed an advance directive. Family physicians, with their longitudinal relationships and whole-person approach, are uniquely positioned to initiate and revisit these conversations across the lifespan. ## Why Advance Care Planning Matters Advance care planning improves alignment between patient wishes and the care received at the end of life. It reduces unwanted aggressive interventions, ICU admissions, and in-hospital deaths. Caregivers benefit as well, experiencing less anxiety, depression, and decisional burden when a patient's preferences have been clearly documented. ACP is associated with improved patient and family satisfaction with care and reduces healthcare costs in the last months of life without compromising quality. ## Key Concepts and Terminology An advance directive is a legal document expressing a person's healthcare wishes and includes both living wills and healthcare proxy designations. A living will specifies preferences for treatments such as mechanical ventilation, CPR, artificial nutrition, and dialysis in specified clinical scenarios. A healthcare proxy, also called a durable power of attorney for healthcare, designates a trusted person to make medical decisions when the patient lacks capacity. POLST or MOLST (Physician/Medical Orders for Life-Sustaining Treatment) forms are portable medical orders that translate patient goals into actionable orders and are appropriate for patients with serious illness or advanced frailty. Goals of care refer to the overarching values and priorities guiding medical decision-making, such as prolonging life, maintaining independence, or maximizing comfort. Decision-making capacity is the clinical determination that a patient can understand, appreciate, reason about, and communicate a healthcare decision. ## When to Initiate ACP All adults aged 18 and older should be encouraged to identify a healthcare proxy. Specific triggers for deeper conversations include a new diagnosis of serious or life-limiting illness, significant functional decline or hospitalization, transition to long-term care, diagnosis of dementia (early, while capacity is intact), annual wellness visits in older adults, and patient or family request. ACP is not a one-time event; preferences should be revisited regularly as health status changes. ## Communication Frameworks ### The SPIKES Protocol (for Serious News) The SPIKES protocol provides a structured approach to delivering serious news. Setting involves ensuring privacy, adequate time, and having the right people in the room. Perception means assessing what the patient already knows and understands. Invitation involves asking how much information the patient wants to receive. Knowledge is shared using clear, simple language while avoiding jargon. Emotions are addressed by responding to emotional reactions with empathy. Summary wraps up the discussion and outlines next steps. ### The Serious Illness Conversation Guide Developed by Ariadne Labs, this structured framework uses key questions to elicit patient values and preferences. These include asking what the patient understands about their illness, what their most important goals are if health worsens, what their biggest fears or worries are about the future, what abilities are so critical they cannot imagine living without them, how much they are willing to go through for the possibility of gaining more time, and how much their family knows about their priorities and wishes. ### REMAP Framework (for Goals of Care) The REMAP framework begins with Reframing, where the clinician acknowledges changes in the patient's condition and proposes a conversation about what matters most. Expecting emotion involves naming and validating emotional responses. Mapping out patient values explores what gives the patient's life meaning. Aligning with values connects medical options to the patient's stated priorities. Planning makes a concrete plan and documents it. ![Communication framework comparison chart for ACP conversations](acp-communication-frameworks.jpg) ## Conducting the Conversation ### Practical Tips Adequate time should be scheduled, and a dedicated ACP visit can be billed under CPT 99497 and 99498. The healthcare proxy or key family members should be invited to participate. Open-ended questions and reflective listening are more effective than closed-ended queries. Normalizing the conversation with statements such as "I have this conversation with all my patients" reduces anxiety. Values should be explored before discussing specific interventions. Yes-or-no questions about specific treatments without context should be avoided. Language the patient understands should be used, with clear explanations of what CPR, intubation, and artificial nutrition actually involve. The conversation itself, not just the resulting paperwork, should be documented in the medical record. ### Addressing Common Challenges When patients say they are not ready to talk, the clinician should respect the timing but plant the seed and offer to return to the topic. When family members disagree, it helps to clarify that the healthcare proxy's role is to represent the patient's wishes, not their own preferences. Cultural considerations are important because some cultures prioritize family-centered decision-making over individual autonomy, and the approach should be adapted accordingly. Prognostic uncertainty should be acknowledged honestly, using ranges such as "hours to days" or "weeks to months" rather than specific numbers. ## Documentation and Implementation ### Advance Directives State-specific advance directive forms are available free at caringinfo.org and should be provided to patients. Clinicians should assist patients in completing documents and filing copies in the medical record. Patients should be encouraged to share copies with their healthcare proxy, family, and other providers. Documents should be reviewed and updated periodically and after significant health changes. ### POLST Orders POLST orders are appropriate for patients with serious illness, advanced frailty, or limited life expectancy. They translate goals of care into actionable medical orders honored across care settings and cover CPR status, level of medical intervention (comfort only, limited, or full), and artificially administered nutrition. A POLST requires a conversation between the patient or proxy and the clinician and must be signed by the physician. The form is portable and recognized by EMS, hospitals, and long-term care facilities in most states. ### Electronic Health Record Goals-of-care conversations should be documented in a dedicated, searchable section of the electronic health record. Scanned advance directive documents should be uploaded. POLST orders should be visible and accessible to all care team members. Patients who have completed ACP should be flagged in the problem list or banner for easy identification. ![POLST form overview showing key decision domains](polst-form-overview.jpg) ## Special Considerations ### Dementia ACP should be initiated early in the disease course while the patient retains decision-making capacity. Feeding preferences, hospitalization for acute illness, and comfort measures should be addressed. As the disease progresses, reliance shifts to the healthcare proxy and previously documented wishes. ### Pediatrics Adolescents with serious illness should be included in age-appropriate ACP conversations. Pediatric advance care planning involves parents as primary decision-makers with the child's assent when developmentally appropriate. ### Emergency Situations In the absence of known advance directives or POLST, the default is to provide full treatment. Emphasizing to patients and families that documented wishes prevent unwanted interventions can motivate completion of these documents. ## Billing for ACP CPT 99497 covers the first 30 minutes of advance care planning in a face-to-face encounter, with no co-pay when performed during an Annual Wellness Visit. CPT 99498 covers each additional 30 minutes. These codes can be billed by physicians, nurse practitioners, and physician assistants. The time spent and topics discussed should be documented. ![Advance care planning workflow integrated into primary care practice](acp-workflow-primary-care.jpg) ## Key Clinical Pearls ACP is a process, not a form; the conversation is more important than the paperwork. Starting with values and goals before discussing specific interventions transforms abstract questions into meaningful decisions with context. A healthcare proxy designation is the single most important advance directive component because no document can anticipate every clinical scenario. POLST orders are for seriously ill patients and translate conversations into portable medical orders, whereas advance directives are for all adults. ACP should be revisited at every major health transition because preferences often evolve with changing health status. ## References 1. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. *J Pain Symptom Manage*. 2017;53(5):821-832. 2. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. *JAMA Intern Med*. 2014;174(12):1994-2003. 3. Hickman SE, Keevern E, Hammes BJ. National POLST paradigm task force guidance for POLST facilitators and advisors. *J Palliat Med*. 2015;18(2):S43-S49. 4. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. *BMJ*. 2010;340:c1345.