Advance Care Planning: What, When, and How? (2025)

Abstract

Advance care planning (ACP) is a fundamental part of the patient-provider relationship. It is a process that evaluates a person’s values and determines preferences for care in various clinical scenarios, based on personal goals and expectations.

ACP has two main goals: 1) identifying the surrogate decision maker; and 2) establishing the patient’s goals of care for treatments or procedures which align with their wishes.

ACP provides an opportunity to help patients and their families to prepare, on their own terms, for the changes brought by serious or progressive illness. This fosters a collaborative, therapeutic relationship in planning for the future.1 When addressing goals of care, it is essential to evaluate the perceived burden of certain procedures or life conditions such as depending on others for activities of daily living (ADLs) or living in a long-term care facility.

As providers, we use patient history, laboratory data, exam findings, pathology reports, imaging studies, and more in making medical decisions for patients and recommending a plan of care. ACP can provide additional valuable information to guide patient-centered medical management.

In this article, we will discuss the current state of goals-of-care conversations, compare the different ACP documents currently available, and provide guidance to providers on how to engage in these conversations. This includes addressing patient’s values, wishes, and fears, without diminishing their sense of hope.

Background

In 1990, through federal legislation, the Patient Self-Determination Act was established. This law requires health care providers that participate in Medicare and Medicaid programs to:

• Inform patients of their rights under state law to make decisions concerning their medical care.

• Periodically inquire if a patient has executed an advance directive and document the patient’s wishes regarding their medical care.

• Avoid discriminating against persons who have executed an advance directive.

• Ensure that legally valid advance directives and documented medical care wishes are implemented to the extent permitted by state law.

• Provide educational programs for staff, patients, and the community on ethical issues concerning patient self-determination and advance directives.”2

According to the Centers for Medicare and Medicaid Services (CMS), ACP is a “voluntary, face-to-face discussion between a physician or other qualified health care professional and the patient, their family member, caregiver, or surrogate (as appropriate) to discuss health care wishes if they become unable to make their own medical decisions.”3 These discussions aim to understand what the person would want if they became severely ill and unable to decide on a clinical plan of care. This includes, but is not limited to, code status and life support preferences, the selection of a healthcare power of attorney, and the preparation of a living will.

Time spent in ACP face-to-face conversations can be billed if it is entirely dedicated to exploring the patient’s values and preferences and is documented appropriately. Creation of legal documents is not a requirement to bill for an ACP visit. Documentation must include the voluntary nature of the conversation, who was present, description of advance directives, and the patient’s diagnosis with evident changes in their clinical condition. If the patient is unable to participate, an explanation of the reason should be provided. Time spent in the face-to-face time must also be documented. The outcome of the discussion should include the patient’s healthcare wishes should they become unable to make their own medical decisions. Ideally, the selection of a surrogate decision maker should also be accomplished through this process.

Current Status

ACP conversations and documentation rates remain low nationwide. According to the National Center for Health Statistics (2011), 28% of home health patients, 65% of nursing home residents, and 88% of hospice care patients had an advance directive on record. A systematic review from July 2017 found that 36.7% of U.S. adults had completed an advanced directive and 29.3% had a living will. Among the 150 studies with almost 800,000 adults, more than 80% of subjects were older than age 65 and 62% lived in a long-term care setting. Similar proportions of patients with chronic illnesses (38.2%) and healthy adults (32.7%) had completed advance directives.7

In a January 2019 study, examining the prevalence of advance directives among ICU patients requiring mechanical ventilation, fewer than 50% of patients overall had an advance directive. Significant differences were noted across age groups: the completion rate was lowest among the “young old” (32.8%) and highest among the “oldest old” (53.6%). The study also raised concerns about potential disparities related to race, although specific data on racial subgroups were not provided.8

During the early months of the COVID-19 pandemic, there was increased focus on ACP discussions and end of life decision-making. In June 2020, the National Poll on Healthy Aging surveyed US adults aged 50–80 about their ACP activities before and during the pandemic. The survey revealed that 59% of participants had spoken with a family member or close friend about their medical care wishes and 29% of participants initiated these conversations within the first 90 days of the pandemic. Forty-six percent reported having completed at least one advance care planning legal document, with 7% doing so during the first 90 days of the pandemic.9

Racial and ethnic disparities in health-related outcomes extend to serious illnesses, end of life care, and advance care planning. These disparities have been partially attributed to differences in completion of advance directives, engagement in ACP, perceptions of care quality, hospice enrollment, and end of life care service utilization.10 Compared with white counterparts, African Americans have been found to be less likely to complete advance directives and have care preferences respected.11

Data from the 2009–2010 HealthStyles Survey explored the relationship between advance directive completion and demographic or socioeconomic factors. Among 7,946 respondents, 26.3% had an advance directive. The most frequently reported reason for not having one was lack of awareness. Completion rates were higher among older individuals, those with more education and higher income, and those with chronic diseases or regular healthcare access. Advance directive completion was less common among non-white respondents.12

National data from 2011 on advance directives in long-term care populations (nursing homes, home health, and hospice care) was derived from the 2004 National Nursing Home and the 2007 National Home and Hospice Care Surveys. These reports highlighted disparities in ACP by age and race. Disparities were more pronounced in home health and nursing home populations than in hospice care populations.13 Although racial disparities persist, the gap between White and African American populations has narrowed in recent years, with more African Americans participating in goals-of-care conversations.14

Despite the prominence of advance care planning, relatively few patients complete advance directives. Completion rates vary widely, often influenced by factors such as ethnicity, age, and gender. Moreover, even when advance directives are completed, they are often not followed during a crisis.

Several barriers may contribute to this:

• Treating physicians may be unaware of the existence of the document. Fewer than one-third of individuals who complete an advance directive have discussed its content with a physician.

• Surrogate decision makers may lack a clear understanding of the patient’s wishes.

• Uncertainty regarding the patient’s prognosis may complicate decision-making.

• Disagreement among family members about the goals and plan of care may interfere with the implementation of the advance care plan.

Additionally, terms like “terminally ill” or “meaningful life” are often interpreted differently by patients and physicians, complicating the translation of advance directives into actionable care plans.

Patients with Physician Orders for Life-Sustaining Treatment (POLST) forms are more likely to have their wishes respected, as these documents provide specific, actionable medical orders tailored to the patient’s goals of care.15

Surrogate Decision Maker

The first step in developing an advance care plan is to identify a surrogate decision maker and, if possible, complete Durable Power of Attorney for healthcare (DPOA) paperwork. This document legally authorizes the selected person to make decisions on behalf of the patient if they become incapacitated. It is essential to determine who the patient trusts to understand and honor their wishes. This chosen individual may not always be a family member. Some patients prefer an emotionally strong surrogate to make difficult decisions, such as letting the patient die, without being influenced by personal feelings. Ideally, the surrogate should make decisions that align with the patient’s beliefs and goals, a principle known as “substituted judgment.”

In the absence of formal DPOA documentation, state legislation often dictates which relatives can make decisions on the patient’s behalf. In most states, this follows a familial hierarchy (Figure 1). However, challenges can arise regarding the role of step-children, separated or estranged spouses, non-married same-sex and domestic partners, and non-biological relatives. In Missouri, there is no legally mandated hierarchy, and the individual best able to reflect the patient’s wishes and values is deemed qualified to make decisions. To avoid confusion or conflict, it is recommended that providers inquire about the patient’s preferred decision-maker during clinic visits or hospital admissions.

Some patients may hesitate to appoint a surrogate, fearing it could diminish their independence. Providers can reassure them that the DPOA only becomes active when the person loses decision-making capacity. It’s helpful to emphasize that designating a trusted person ensures the patient’s voice is heard, minimizes family conflict, and avoids decisions based on emotions rather than the patient’s wishes.

If a patient verbally identifies a surrogate, this should be documented in their medical chart and this decision should be respected. However, for legal purposes, patients should be encouraged to complete a DPOA document, especially if family conflict is anticipated. Members of the patient’s treatment team should not act as surrogate decision-makers.16

We recommend inquiring about a DPOA at hospital admission and confirming the presence of advance directives. If no surrogate is named, asking the patient who should make decisions on their behalf and documenting their response is crucial in should decisional incapacity develop during hospitalization.

In situations where no surrogate is designated and family members disagree, the treatment team should work toward a consensus. Palliative care teams, family meetings, and ethics committees can provide invaluable support in these circumstances. The primary focus should remain on determining what the patient would have wanted, asking questions like, “What would the patient choose now, in this clinical situation, if they could tell us?“

If a DPOA has been completed, the legally appointed surrogate becomes the decision-maker at the time of decisional incapacity.

Legal Guardianship

A legal guardian is a representative appointed by the court when a patient has been deemed incapacitated by legal standards and is unable to make decisions.

ACP Documentation: Type of Advance Directives

Current advance care planning documents help guide healthcare decisions when a person is unable to communicate their wishes (Table 1). These documents outline the procedures the patient would prefer or wish to avoid in scenarios involving a poor prognosis, low likelihood of survival, or life-altering events. Advance directives are not limited to the elderly or seriously ill, as unexpected medical events can happen at any time. These documents should be completed by adults with decision-making capacity, and providers are responsible for respecting and adhering to these stated preferences.

Common types of advance care planning documents include:

• Living Will: Specifies the types of medical care the individual wants or does not want in specific circumstances.

• Durable Health Proxy (a.k.a. Durable Power of Attorney for Healthcare–DPOA): Legally designates a surrogate to make healthcare decisions if the patient becomes incapacitated.

• Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST): These documents provide actionable medical orders, often for individuals with serious or terminal illnesses.

Other less common forms include Out-of-Hospital Do Not Resuscitate (DNR) orders, specific directives such as “Do Not Hospitalize” or “Do Not Intubate,” and organ and tissue donation forms. While these forms can exist independently, many decisions (e.g. CPR, intubation, and other life-sustaining measures) are commonly included in a Living Will or POLST/MOLST.

POLST forms are particularly useful for patients in advanced stages of life-limiting conditions, enabling emergency medical responders to quickly assess and respect treatment preferences during critical situations. All these documents are widely available online, often for a fee. Numerous tools and forms are also accessible online to help individuals understand and articulate their wishes effectively.

How to Have ACP Conversations

Early and proactive ACP discussions are ideal, however it’s never too late to engage a patient about their future goals. While everyone is a candidate for ACP discussions, certain situations should act as clear triggers. These include a new diagnosis of a serious illness, frequent hospitalizations for a chronic disease, life-changing events, or an acute worsening of a known illness. A clinic appointment following a hospital admission provides an excellent opportunity to address goals, especially if the admission involved an acute exacerbation of a chronic condition requiring invasive interventions (e.g. ICU admission or intubation). Another opportunity to initiate these discussions arises when a patient mentions a loved one’s illness, particularly if it involved procedures such as dialysis or life support. It is recommended to address goals periodically, even if none of these events occur.

A helpful prompt to start these conversations is the surprise question: “Would you be surprised if the patient died in the next year?” A negative answer to this question is a strong indicator to begin or revisit ACP discussions, as it suggests a high risk for short term medical decline. The surprise question has been validated across various conditions and healthcare settings, especially when estimating prognosis is challenging.17

Establishing goals of care is the outcome of meaningful conversations—sometimes multiple discussions—where the provider learns about the person, not just the patient. We approach this dialogue as “goals in life,” exploring what brings the patient joy, what they consider important, and what they look forward to. Providers can also ask about treatments that might be considered too burdensome, even if it could help achieve their goals.

Having ACP conversations to clarify life goals before a crisis occurs empowers the healthcare team to guide decision-making during such crises. Once an individual’s life goals are understood, discussing their clinical condition and prognosis becomes more productive, leading to the establishment of personalized goals and a corresponding care plans.

The conversation about treatment options becomes personal, based on what is known about the patient, not solely the medical facts. It is important to recognize that both life goals and care goals may evolve based on the situation, expectations, and likelihood of successfully achieving those goals.

The process of ACP varies depending on the setting in which the patient is located. Ideally, it should occur over one or more clinic visits with the primary care provider or the specialist managing the patient’s condition. When decisions are delayed until the hospital setting—such as during an acute event or decompensation of a chronic condition—the stakes and stress levels are higher. Decisions in these situations are often rushed and made by providers who lack an established relationship with the patient.

Early conversations are particularly beneficial for conditions that naturally or predictably progress to a state of decisional incapacity. Diseases like dementia, recurrent strokes, and Parkinson’s Disease can lead to altered mental status as they progress, similar to ESRD or cirrhosis. In those cases, discussions may be more hypothetical, requiring detailed explanation of natural course of the disease. This can be overwhelming for patients and families, so empathy is essential, as is assessing understanding and addressing questions and emotions.

We recommend starting this conversation by explaining disease progression and leaving patients with “homework” to discuss their perceptions of the illness and goals with their loved ones. For example, you might say: “I’d like you to think about what’s most important to you and what limits you’d want to set in case you get very sick. Please discuss this with your family, and we can revisit the conversation at your next appointment.”

We frequently hear that the patient would not want to remain in a vegetative state. However, many clinical scenarios involve changes in quality of life and functional dependence that fall short of that extreme. Advance directives are sometimes difficult to interpret in specific scenarios, so exploring goals and burdens can provide more actionable insights when those situations arise.

Guidelines and other articles recommend initiating these conversations by assessing the patient’s and family’s understanding of the disease and current condition.18 The SPIKES protocol uses a six-step process for delivering bad news and is a useful tool in disclosing a diagnosis and establishing next steps in care19 (Figure 2). Before diving into the medical condition, it is essential to know the person underneath the patient by understanding their values, hopes, and expectations. Questions about quality of life, goals, and burdens are key in tailoring care to the individual and establishing a relationship with patients and families.

Quality of life is a dynamic concept that evolves over time and in response to circumstances. People can adapt to challenges and modify what was considered a good quality of life. By understanding what constitutes a good quality of life for the patient, providers can make more personalized recommendations when critical decisions arise. For example, if a patient enjoys gardening or fishing and values independence, they may consider losing these abilities an unacceptable burden. In the future, if that patient presents with a stroke, the conversation on next steps should start by evaluating how interventions can be offered to maintain quality of life and avoid treatment that is considered too burdensome.

Once this basic but important information has been obtained, it is critical to also understand how much the patient knows about their disease and how much they wish to know. In some cultures, patients don’t want to know and prefer to delegate decision-making to family members. Providers should always ask respectfully and avoid making assumptions. For instance:

“To provide the best care for you, is there any cultural or religious information I should be aware of? How much would you like to know about your condition and be involved in treatment decisions?”

Patients’ perceptions of their condition and prior complications can influence what they consider burdensome and affect their expectations. For example, patients receiving treatment such as hemodialysis for end stage renal disease may be more accepting of burdensome interventions.20 On the other hand, individuals who have previously expressed a desire to avoid a diminished quality of life may adapt their perspectives if faced with unexpected challenges and potential new disabilities.

Historically stroke specialists have been concerned about the effect of ‘therapeutic nihilism’ on outcome and mortality; where expectations of poor outcomes become self-fulfilling once treatments are stopped.21 The solution for this is to have clear goals of care, base treatments on patient’s values, and estimate the bearable treatment burdens.

The REMAP framework (Reframe, Expect Emotions, Map Out, Align Values, and Plan for the Future) outlined by Childers et al. is a practical approach to ensure empathetic and productive discussions (Figure 3).22 In the Reframe step, providers assess the patient’s understanding of their situation and provide missing information. This builds a foundation for further discussion and ensures all are on the same page. Next, Expect and address the emotions produced by the information from the Reframe step. Using empathetic responses and strategic silence, providers allow patients to Express Emotions prior to continuing with the ACP discussion. Next, Map Out the future. Providers will ask about patient values, quality vs. quantity of life, willingness for hospitalization or long-term care placement, what hobbies they enjoy, how they spend most of their time, etc. This step also addresses what the patient does not want, or what would be considered too burdensome. It’s reasonable for patient to be undecided on a treatment course, but asking them what is too burdensome can help establish boundaries in their care and narrow options. In the Align Values step, providers will reiterate the patient’s values. Phrases like “It sounds like you value X the most.” And, “You definitely don’t want to go through Y, correct?” This helps the patient feel heard and reduces the chance of miscommunication. Finally, Plan for the future, bringing everything together. Treatment recommendations should always be attached to one of the patient’s values, such as: “It sounds like you prefer Z option which would help you with achieving X. You would not have to undergo Y if you went with Z.” This can help patients feel more comfortable with their decisions as it is framed by their own goals. Benefits and consequences of decisions need to be outlined clearly for the patient.

Goals of care can include attempting to cure the disease (with aggressive therapy, which may be burdensome), improving function, decreasing pain, spending time with loved ones, doing what is considered important, and living as long as possible, no matter the cost. When the goal is to live as long as possible, it is important to establish what we call “lines in the sand,” which are the conditions a person may not want to endure, even if it means gaining additional time. Some people may say they don’t believe anything would be too much of a burden, but a discussion about the limits of medicine and the point at which prolonging life is no longer possible should still take place. Most likely, this conversation will require multiple visits and acceptance of the progression of the disease. A good approach is to have alternative plans and goals if the treatment burden becomes too great, if complications arise, or if the response is not what was expected. In the acute setting, establishing time-limited trials to evaluate improvement can be useful in facilitating acceptance of the prognosis and disease progression. The ACP process should conclude by documenting the conversation as a narrative, detailing what is important for the person, and placing this report in an easily accessible location in the chart.

Hope should be included in the conversation, especially when prognosis is limited, to delineate what the patient/family may be wanting and expecting. Hope and goals can change throughout the disease process. Some may hope for time with family while others hope to live as long as possible. A good approach is to ask the patient what they are hoping for, what they are expecting, and what they are fearing could happen. Knowing this, one can frame hope with realism: “If your main goal cannot be accomplished, what is the next most important thing for you?” “If your time is limited, what is important and how do you want to spend that time?”

At all points in the disease process, patients should be reassured that they will not be abandoned and will continue to get care and symptom management independent of their treatment decision.

Silence is the most important skill needed during difficult conversations and providers are not usually skilled at using silence. Our human response and training tempt us to “fix things” and provide reassurance as an automatic response. Silence requires practice and a conscious awareness to listen without interruptions. Learning to read the room and be aware of non-verbal communication allows us to guide the rest of the conversation. Understanding and naming emotions gives everyone a space to accept their feelings. When a situation is highly emotional, avoid additional conversation or providing more information. If needed, wrap up the conversation and offer to continue it later. This gives everyone time to process the information and saves energy when the conversation is not leading to any conclusion. Some people are more focused on data than others. For data-seeking individuals, numbers are important, and statistics help to support decisions. In highly emotional people, data is not as important as focusing the conversation on values and goals.

Code Status Discussions

Code Status should be framed within the context of prognosis and the likelihood of success. It should be addressed like other medical procedures using a patient–specific clinical scenario. It is often more effective to recommend “do not attempt resuscitation” (DNAR/DNR) when clinically appropriate, rather than asking patients to decide without guidance. It’s crucial to clarify that DNR refers only to the case of cardiac arrest and does not mean withholding other treatments. This recommendation should not be made precociously. It should utilize the provider’s judgement after careful assessment of a patient’s hopes, values, fears, and care goals. DNR discussions should acknowledge prognosis and indicate what resuscitation efforts would not help the patient meet their goals.23

Unfortunately, many patients arrive to the emergency department (ED) without having prior goals of care conversations. While the ED environment is not ideal for in-depth conversations, it’s recommended to ask about advance directives and address immediate concerns with a plan to revisit these discussions later. Code status documentation at hospital admission can be addressed by asking the patient about advance directives, and if they have none, ask how they would feel about life support based on their condition and diagnosis. Always plan to revisit the conversation once the patient is admitted to the floor and can have a more in-depth conversation. Asking what is important for the patient is something that can be achieved even in a busy ED environment with more detailed information to be obtained later.

As a part of ACP discussion, it is important to educate patients about the realities of cardiopulmonary resuscitation (CPR). Media portrayals often misrepresent the outcomes. For example, survival to discharge after in-hospital cardiac arrest is approximately 15–20%, far less than what is depicted on television. The Go-Far score can help predict neurologically intact survival after in-hospital CPR, evaluating for clinical condition, comorbidities, age and if admitted from a nursing facility.24

It is crucial to clarify that the choice to be DNR only takes place in case of cardiac arrest, and patients will continue to get full treatment for their medical conditions. DNR does not mean do not treat. Also, if the patient chooses to remain full code, it is important to clarify that CPR does not guarantee success, especially in critically ill patients.

Do not attempt resuscitation orders (DNAR/DNR), in case of cardiac arrest, are usually accompanied by a do not intubate order. It is important to clarify that resuscitative measures during cardiac arrest will include intubation and artificial ventilatory support. In context of cardiac arrest, a patient should not be intubated if CPR isn’t attempted. Alternatively, a patient can choose to avoid CPR (including intubation) in case of cardiac arrest but still allow short-term intubation for a potentially reversible condition, like pneumonia.

Conclusion

ACP is a dynamic process that should take place within the provider-patient relationship with the intention to understand the person’s values and goals. Ideally, conversations should begin early in the course of a chronic disease, especially if it is expected that the patient may lose decision-making capacity later. These conversations are not limited to end-of-life care but encompass what constitutes a good quality of life, what burdens patients are willing to bear, and their goals in life when facing a serious disease or a life changing condition. With this understanding, it is easier to create a patient-centered plan of care.

Frequent reassessments are essential as diseases progress or life-changing events occur. Including hope in these discussions, whether it’s hope for time with loved ones or achieving specific goals—can provide comfort and direction, even when prognosis is limited. Above all, patients should be reassured that they will not be abandoned and that their care will continue to align with their values and goals.

Footnotes

References