A GUIDE to help patients and families better understand serious illnesses

Structured approach to ACP conversations

Many patients want to address ACP when they are healthy.⁷ They also expect family physicians to help them understand serious illness diagnoses and their anticipated effects on them, and they want family doctors to be involved in end-of-life decision making,⁸ which makes the family practice setting an optimal place to engage in these conversations. Characteristics of family practice—family physicians’ longitudinal relationships with and long-standing knowledge of patients’ social contexts, overall health status, and personal values—lend themselves well to having deliberate and iterative ACP conversations.^7,9 Clinicians have previously reported preferring a multiprofessional approach to conducting these conversations, and patients are accepting of such an approach.^3,5 Interprofessional primary health care teams allow for various clinicians to participate in prognostic conversations and for the patient’s family physician to lean on trusted interdisciplinary team members, thereby preventing one health care professional from shouldering the burden of these complex discussions alone. Unfortunately, most clinicians receive little or no training on communicating prognoses, leading some to avoid engaging in these important conversations.⁵

To our knowledge, there is no described step-by-step approach that guides clinicians in the discussion of common illness trajectories with their patients as a means of cultivating patients’ prognostic awareness and, in turn, supporting informed ACP. Family medicine residents,⁹ clinicians, and patients³ have expressed interest in a structured and standardized approach that would allow them to learn and perform ACP. We offer a structured approach using the mnemonic GUIDE—its letters standing for graph trajectory, understand, impact, death, and expect uncertainty and respond to emotions—which clinicians can use to lead prognostic-related discussions. This structured approach offers clinician teachers a standardized teaching tool that might not only empower trainees and increase their comfort in leading and practising these critical conversations, but also form the basis of a rubric that can guide standardized assessment of learners’ skills.

How to use GUIDE

Physicians should expect and be prepared to discuss prognoses honestly and empathetically with patients early on in their illnesses.^3,4 Clinicians should tailor approaches and information to each patient’s preferences and needs. Table 1 provides an overview of the steps represented by the GUIDE acronym and sample phrases that can be used with each step.

Graph trajectory. Pictorial representations of illness trajectories may help some patients better understand their prognoses. In a 2003 paper, Lunney et al described 4 distinct illness trajectories in older patients for the year before death.¹⁰ These illness trajectories described patterns of sudden death and of death from cancer, organ failure, or frailty.¹⁰ In 2018 Ballentine described a fifth illness trajectory for catastrophic events.¹¹ Common illness trajectory graphs can be found online, including examples from Pallium Canada.¹²

Understand. Help patients understand that the x-axis of the graph represents time flowing from left to right while the y-axis represents their level of function (eg, how independent or dependent they are in completing daily tasks, how easy or difficult it may be to do the things they enjoy). Explain that the curve represents a typical person’s journey of living with their specific illness (eg, organ failure, cancer, dementia, frailty).

Impact. Illness trajectory graphs can help guide prognostic discussions by providing an overview, or a “big picture” look, of how an illness might influence a person’s function and expected outcomes over time. Explain to your patient that overall function and symptom burden are expected to worsen over time and are signs of their illness advancing. This is why completing ACP early is important, as it empowers them to have control of their care as the expected course of events unfolds. Information should be tailored to each patient, as they may have comorbid conditions with different trajectories that could affect each other.² Given the comprehensive multidisciplinary whole-person approach inherent to family medicine, these teams are able to tailor discussions to patients’ values, social contexts, and overall health status, and over time.

Discussing best- and worst-case scenarios, as described by Schwarze and Taylor, can help clinicians explain the impact of an illness on function when multiple possible outcomes exist.¹³ This technique encourages clinicians to describe potential best case, worst case, and most likely outcomes resulting from an illness; this conversation should be realistic, be personalized, and allow a patient to imagine the range of potential outcomes.¹³

Death. Death is an expected outcome of all serious illnesses. Acknowledging it, but not necessarily focusing on it, during initial prognostic discussions might help patients appreciate the seriousness of their illnesses and help clinicians broach end-of-life planning discussions in future conversations.

Expect uncertainty and respond to emotions. Illness trajectory graphs can be used to give an overview of what the future may look like for a group of patients, but they cannot describe exactly what individual patients might experience.² Therefore, prognostic uncertainty should be acknowledged and normalized with patients to help maintain a sense of hope and set realistic expectations.⁵ Acknowledging prognostic uncertainty, when done with sensitivity, might enhance a therapeutic bond and make discussing a difficult topic easier to do.

Prognostic discussions are likely to evoke strong emotions, which should be acknowledged and responded to prior to progressing through each step of the conversation.