Thinking Ahead: Advance Care Planning for Patients With Cirrhosis

Key Points

• Among patients with cirrhosis, advance care planning (ACP) should begin in the outpatient setting early in the disease course and be periodically updated, particularly with changes in clinical status.

• Given the frequency with which hepatic encephalopathy can impair decision‐making in this population, it is vital for the patient to identify an appropriate surrogate decision maker and involve this person throughout the ACP process.

• Rather than make advanced treatment decisions, the clinician should prepare patients and surrogates to make the best possible decisions in the acute clinical setting based on the patient’s evolving values, goals, and priorities.

The clinical trajectory of patients with cirrhosis is variable and unpredictable, with relative periods of stability punctuated by acute, life‐threatening exacerbations. Patients frequently encounter difficult and complex medical decisions, but may experience complications, such as hepatic encephalopathy, that impair their ability to participate in decision‐making, particularly at the end of life (EOL). Advance care planning (ACP) is the process of reflecting and planning for future medical care. Early integration of ACP in other patient populations has been shown to improve decision‐making at the EOL, reduce health‐care utilization, and enhance quality of life. ¹ There is a burgeoning literature showing that, while most patients with cirrhosis desire ACP, these discussions occur infrequently or too late. ²

Barriers to ACP

Patient barriers to ACP include lack of understanding of disease trajectory, unrealistic expectations of prognosis, and difficulty planning for EOL while maintaining hope for transplant. ³ , ⁴ Clinicians have reported barriers such as training deficits on EOL communication and cultural competency, time constraints, and focus on the need for liver transplantation rather than preparing for other, often less favorable outcomes. ⁴ , ⁵

Framework for ACP Discussions

Timing and Workflow

Emerging evidence indicates that patients with cirrhosis prefer for ACP to occur early in the disease course, prior to the onset of decompensation (particularly hepatic encephalopathy). ³ These discussions, which may occur over several visits, should ideally take place in the outpatient setting with a provider who can develop a longitudinal relationship with the patient and his or her surrogate decision maker. Clinicians should periodically review and update these discussions, especially when there is a change in clinical status or hospitalization (Fig. 1). ⁶ In the busy outpatient setting, clinicians can use strategies to integrate ACP into the clinical workflow that leverage the entire multidisciplinary team and latest technologic advances (Table 1).

FIG 1.

Timing of advance care planning (ACP) in relationship to disease trajectory. ACP should ideally begin at time of diagnosis and be reviewed periodically throughout the disease course, particularly when there is a change in clinical status. Adapted from Brisebois et al. ⁶

TABLE 1.

Strategies to Integrate Advance Care Planning Into the Outpatient Clinical Workflow

	Strategy
Physician	Include ACP on the health care maintenance checklist for all patients with cirrhosis, regardless of transplant candidate status, along with other important tasks such as surveillance for hepatocellular carcinoma and esophageal varices Conduct ACP discussions over several visits and consider scheduling a dedicated visit for ACP if there is not sufficient time during normal clinic visits Obtain reimbursement for ACP related visits by using relevant ACP billing codes, which are time‐based, can be used unlimited times, and may be used along with other billing codes
Multidisciplinary Team	Engage other health professionals to facilitate ACP discussions; qualified providers under Medicare include physicians, nurse practitioners, physician assistants, and clinical nurse specialists of any specialty Mobilize clinic support staff to provide patient outreach, such as mailing patient educational resources and advance directives and uploading completed documentation into the EHR
Technology	Use EHR features to identify patients who lack ACP documentation Document ACP in a centralized location within the EHR (e.g., ACP tab) such that documentation is easily accessible to all providers caring for the patient Use EHR patient portal to share patient educational resources and upload ACP documentation Share video or web‐based decision aids for ACP that can be viewed and completed by patients at home Harness telehealth for ACP discussions, particularly for patients living in rural areas

Abbreviations: ACP, advance care planning; EHR, electronic health record.

Content

Given the uncertain trajectory of patients with cirrhosis and frequency with which hepatic encephalopathy can impair decision‐making at the EOL, ACP in this population should focus on preparing patients and surrogates to make decisions as situations arise, rather than making specific treatment decisions in advance (Fig. 2). ⁷ First, the clinician should ask the patient to identify a surrogate decision maker and involve this person early and throughout the ACP process. A good surrogate knows the patient well and importantly, makes decisions based on the patient’s values rather than the surrogate’s own values (also known as substituted judgement standard) (Tables 2 and 3).

FIG 2.

Framework for advance care planning (ACP) in patients with cirrhosis. ACP is the ongoing process of planning for future medical care involving patients, surrogates, and clinicians.

TABLE 2.

Advance Care Planning communication strategies^*

Step	Examples
Identify a Surrogate	If you were to become very sick, is there anyone you trust to make medical decisions for you? Does this person understand what is important to you? How much flexibility would you like to give this person in making decisions for you?
Elicit Values and Goals	Tell me about yourself. What is most important to you right now (both in life and with regard to your health)? When you think about the future, what are you hoping for? What are you worried about? I wish, too, that you might receive a liver transplant. If we cannot make this happen, what other goals can we work toward together?
Discuss Disease Course and Prognosis	Can you tell me about your understanding of your illness? What information would be helpful for you to know at this point? May I share with you how cirrhosis may impact your daily function and what you might expect in the future? Some patients want to know how cirrhosis may affect how much time they have left. Is that something you want to talk about?
Clarify Preferences for Life Sustaining Care	When people become so sick that they might die, some people would like to try life support treatments such as CPR and breathing machines, while others prefer a natural death. Have you considered what you might want?
Review Preferences Periodically	Recently, you were in the hospital for a serious bleed. What was that experience like for you? How does it change what you would like for your care moving forward?

^*Some examples adapted from references. ⁶ , ⁷ , ⁹

Abbreviation: CPR, cardiopulmonary resuscitation.

TABLE 3.

Qualities of a Good Surrogate Decision‐Maker ¹⁰

Qualities
Demonstrates decision‐making capacity
Understands the patient’s values, beliefs, and wishes
Implements the patient’s expressed wishes (also known as subjective standard)
Makes decisions based on the patient’s values rather than the surrogate’s own values (substituted judgment standard)
If the patient’s preferences are unknown, advocates for patient’s best interest (best interests standard)

Next, the clinician should get to know the patient as a whole person and elicit their values, goals, and priorities (Table 2). Of note, patient preferences are known to change over time, often with diminishing willingness to accept high burden therapy as disability increases. ⁸ Thus, the clinician can encourage the surrogate to understand the patient’s evolving goals and adaptation to his or her illness, including when burdens of therapy become too great. Then, the clinician should help the patient understand his or her illness and the disease course, including sharing prognostic information if the patient desires. Overly optimistic prognostication should be avoided by incorporating objective tools such as Model for End‐Stage Liver Disease–Sodium in the context of patient comorbidities and frailty.

Finally, the clinician should explore patient preferences for major decisions, such as resuscitation. It should be acknowledged that many transplant centers require patients on the transplant list remain full code. Within these constraints, the clinician should concurrently prepare patients and surrogates to understand resuscitation and possible implications in the event that liver transplantation no longer becomes an option. Decisions about specific interventions, such as upper endoscopy or dialysis, should generally not be made in advance as patients cannot make informed decisions with incomplete or hypothetical information. If the patient becomes incapacitated in the acute setting, the clinician should work together with the surrogate to make the best possible decisions based on the patient’s values and goals. To help the surrogate contextualize the patient’s clinical situation and prognosis, the clinician should describe potential impacts of decisions on the patient’s function, cognitive ability, pain, and other important factors identified by the patient.

Documentation

An advance directive is an important component of ACP, but represents a static snapshot of wishes and cannot cover every potential clinical scenario. Importantly, the patient should document his or her choice of surrogate in the advance directive and describe how much leeway to grant the surrogate in decision‐making. The physician may also complete a Physician Orders for Life‐Sustaining Treatment form to describe code status and preferences for life sustaining care.

Conclusion

ACP helps patients, families, and clinicians prepare for complex medical decisions in the fluctuating clinical trajectory of patients with cirrhosis. The most important part of this process is to identify and prepare an appropriate surrogate who understands the patient’s values and evolving priorities to make the best possible decisions.