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Advance care planning across the care continuum

By: By Kimberly Bagley, DNP, AGPCNP-BC, AGACNP-BC, CCRN

Nurses can play an active role in engaging patients and families in helpful conversations.


  • Nurses are in a unique position to promote advanced care planning (ACP) discussions with patients and families.
  • Nurses can work in tandem with providers and patients to advocate for and promote ACP.

Advance care planning (ACP), which can take place at any point in the healthcare continuum, encompasses an intentional effort on the part of healthcare providers to engage patients in discussions of personal values and beliefs so they can work together to set priorities and identify healthcare preferences. It includes goals of care (GOC) conversations about the patient’s current clinical condition, treatment goals, and code status, as well as identifying a formal/legal guardian to make medical decisions if the patient becomes incapacitated. Documenting these preferences ranges from an ACP note by the provider in the patient’s electronic health record (EHR) to advanced directives, such as living wills, and a completed healthcare power of attorney (HCPOA). The 1990 Federal Self Determination Act establishes the right of individuals to declare medical care preferences using advanced directives or HCPOA. Individual state laws specify ACP and guardianship requirements.

Providers often wait to initiate GOC conversations when patients have reached the point of serious illness. According to Doorenbos and colleagues, patients have better outcomes when ACP discussions and documentation take place early in the care continuum before serious illness develops. Once established, though, ACP discussions should be revisited during the course of care so updates can be implemented as the patient’s health needs and preferences change.

The relationships nurses develop with patients and families can help them promote ACP discussions. Throughout the care continuum, nurses can work in tandem with providers and patients to develop plans.

ACP in primary care

Primary care is an ideal setting to engage in ACP discussions and establish care plans. Primary care providers (PCPs) can ensure continuity of conversations across patient encounters, engage in team-based care through collaboration with specialists, and maintain updated records with current ACP. According to Nowels and colleagues, the types of patients cared for (chronically ill or increased palliative needs vs patients with fewer comorbidities), the practice setting (ACP services are more available in urban areas than suburban), and provider compensation (fixed ACP payments agreed on by insurers and providers increase ACP conversations) play a role in ACP discussions. In addition, time constraints, EHR limitations (for example, not being able to transfer ACPs electronically to other healthcare organizations), and lack of patient understanding of the restraints and complexities of life-sustaining therapies can make these conversations difficult.

Patients have identified several factors as important to ACP. For example, direct provider encouragement can increase patient motivation to discuss the topic. Patients also find electronic reminders, webinars, and interactive websites that increase access to ACP tools to be helpful. In addition, discussions that encourage open dialogue and allow patients and families to ask questions promote ACP. Provider knowledge about ACP, related legal documents, and state requirements makes these discussions more effective.

ACP in specialty clinics

Providers in outpatient settings focused on specialized care (such as cognitive impairment, dementia, heart failure, HIV, and lung disease) face challenges similar to primary care.

For instance, patients with cognitive impairment may have difficulty accessing high-quality end-of-life care. Caretakers may have limited awareness of care standards, and professionals may be unsure of when to initiate ACP discussions. In addition, patients may be left of our decision-making because of questions about their ability to participate.

Patients with dementia can present similar challenges when their level of competence is questioned. However, when ACP is established early in the disease process, it can improve patient outcomes. With a GOC discussion intervention aid, family decision makers of patients with advanced dementia reported better quality of end-of-life communication. In a study by Hanson and colleagues, the intervention aid also resulted in more palliation in treatment plans, increased the number of completed medical orders for scope of treatment (MOST) forms, and reduced hospital transfers by half.

Many patients with chronic diseases such as advanced heart failure or lung disease arrive in specialty clinics seeking hope. In studies by Doorenbos and colleagues and Rocker and colleagues, patients reported wanting to focus on staying alive rather than talking about death. However, ACP discussions can help patients achieve better quality of life as they work toward improved function and disease management. In addition, concern about future quality of life can motivate patients to have GOC conversations.

Providers and nurses can incorporate ACP discussions by asking patients what they’re thinking about their illness, asking about hopes and fears, identifying information and care needs, and making timely referrals. ACP discussions with patients and families at key milestones in the disease process can improve quality of life and increase patient satisfaction with end-of-life communication and care. Other elements for success include considering individual cultural preferences and ensuring regular follow-up.

ACP and young patients

ACP also can be challenging when caring for adolescents and young adults. Advances in healthcare have helped more pediatric patients with chronic or irreversible conditions survive into young adulthood. These patients sometimes continue to be cared for in pediatric facilities, delaying the transition to adult care and making it easy to miss ACP. Nurses can help support patients and their families in ACP by using resources such as Voicing My Choices (bit.ly/38IKd2u), a tool to help empower young people with serious illness to communicate their care and treatment preferences.

ACP in acute care

Even when patients in acute care settings have completed advance directives, escalation of care can occur when documentation isn’t available or when patients and families are confused or disagree about treatment goals and code status. A study by Fumis and colleagues found differences between what healthcare providers would choose for patients vs. what they would choose for themselves in the face of a serious illness, highlighting the importance of clear GOC conversations and ACP. 

A comprehensive ACP program that includes staff training, open communication with patients and families, dedicated palliative care order sets, and resources for all stakeholders can help facilitate advance directive completion in acute care settings. In addition, encouraging patients to state their preferences is vital to preventing healthcare providers from directing care that may conflict with patient wishes. Nurses can help ensure that the care provided meets patients’ needs and matches their stated goals by incorporating the ACP into the EHR. When discrepancy occurs, nurses can then advocate for patients by raising awareness of any discrepancies. (See ACP disparities.)

ACP disparities

Disparities in advance care planning (ACP) can be found among different ethnicities, with White Americans having higher rates of completed advance directives than Blacks and Latinos.

  • Blacks are more likely to experience avoidable hospitalizations, poor communication with healthcare providers, untreated pain, care that differs from personal preferences, and lower rates of transition to hospice.
  • Latinos are less likely to complete ACP, have goals of care conversations, or use palliative care and hospice.

Studies show that these disparities can be reduced by:

  • engaging in ACP discussions with patients and families regardless of paperwork completion
  • approaching ACP with patient preferences in mind
  • using peer-to-peer interactions with lay ACP-trained individuals within the community to build trust and increase knowledge.

Sources: Ejem et al 2019, Hagwood 2019

Nursing and ACP

Nurses play a critical role in ACP discussions across the care continuum. They can encourage ACP discussions, support patients and families, ensure awareness of patient preferences, and provide advance directive and end-of-life resources. For example, having an ACP nurse facilitator in the primary care setting can help increase ACP use. When nurses complete their own ACP, they increase their knowledge, which can make patient conversations easier.

Most ACP discussions occur when patients face a terminal diagnosis, but nurses should incorporate ACP conversations about values and care preferences across all care settings to reach more patients. Training to increase ACP competency related to communication, advocacy, and therapeutic management can help nurses implement these practice changes.

Nurse practitioners (NPs) should know that they can bill for ACP discussions using The Centers for Medicare and Medicaid Services Current and Procedural Terminology (CPT) codes 99497 or 99498.  An ACP code can be billed on the same day as an Evaluation and Management code, with the exception of critical care codes, and doesn’t require completing a MOST, advance directive, or healthcare power of attorney.

Following patients’ wishes

Conversations about ACP and other end-of-life matters can be challenging for nurses and patients. However, a variety of tools are available to help facilitate these discussions. (See Patient engagement tools.)

Patient engagement tools

The healthcare team can engage patients in advance care planning (ACP) over time using brief discussions during regular visits. Several patient-centered tools can be incorporated into primary care settings as resources for patients. Here are two examples:

  • My Living Voice (mylivingvoice.com) helps patients thoughtfully consider and organize their preferences before ACP discussions with the healthcare team.
  • PREPARE (prepareforyourcare.org) offers videos that support patients in communication and decision making and provides easy-to-understand advance directives.
  • Toolkit for Health Care Advance Planning (bit.ly/3hzNeqs), from the American Bar Association, contains eight tools, including conversation scripts.

Making tools and information (including advance directives written in lay terms) available through the patient portal can improve access and increase patient engagement and form completion.

With proper training, good communication skills, and a focus on individual preferences, nurses can provide the care and advocacy needed to ensure patient wishes are followed.

Kimberly Bagley is a critical care nurse practitioner in the intensive care unit at Duke Raleigh Hospital in Raleigh, North Carolina.


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