Having hard conversations

Serious illness communication continuum

Traditionally, ACP has included discussions about concrete issues such as resuscitation and life support, identification of substitute decision makers, and completion of advance directives.⁵ More recently, the framework of ACP discussions has broadened to include concepts such as serious illness conversations (SICs) and goals of care (GOC). While sometimes used interchangeably in clinical practice, these 3 topics represent different conversations along a continuum (Figure 1; P. Munene, MD; teaching presentation to internal medicine residents, University of Ottawa, 2021). These conversations may be iterative and nonlinear as the clinical picture evolves.

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Figure 1.

Serious illness communication continuum

Advance care planning can be considered the first step in a series of important conversations to initiate with patients who have advanced illness, particularly those with cancer. Advance care planning for a patient with cancer may include confirming the selection of a substitute decision maker, discussing any advance directives, and exploring the patient’s overall goals and values when it comes to their health. Many cancer patients have expressed wanting to have ACP conversations earlier in their disease trajectory and would prefer these conversations to occur with a trusted clinician, such as their family physician.^6,7

Serious illness conversations are an emerging construct in which a trusted clinician explores the patient’s specific illness understanding (ie, the patient’s understanding of their specific oncologic diagnosis). During this conversation the clinician shares information about prognosis according to the patient’s preferences and elicits the patient’s goals, values, and priorities in an open-ended format. The SIC might also involve a medical recommendation about next steps when indicated.⁸ Clinicians can use an evidence-based tool, such as the Serious Illness Conversation Guide (Figure 2),^9,10 to provide a structured approach to the SIC.

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Figure 2.

Serious Illness Conversation Guide

Sharing a prognosis is often the most difficult part of an SIC, yet discussing this information is crucial. Most patients with cancer want to know their prognosis and having this information shared with them can lead to a reduction in anxiety and depression symptoms.^11,12 Clinicians are often worried about being wrong when they prognosticate; however, most patients understand that clinicians cannot be perfectly accurate when discussing their prognosis.¹³ The purpose of discussing prognosis is to help patients begin a planning process, not to be right or wrong. Finally, some clinicians worry that patients might “die sooner” after receiving prognosis information, but this has not been supported in the literature.¹⁴ Clinicians should be aware that prognostication in the setting of novel treatments like immunotherapy in metastatic disease can be extremely challenging given variable response rates and unpredictable durations of response.¹⁵ Tips on sharing an expected prognosis with patients are presented in Box 1.

The third step of the continuum, the GOC conversation, is specific to a particular treatment option (eg, venting gastrostomy placement in the setting of a bowel obstruction) and involves integration of the patient’s previously discussed values and goals into shared decision making.¹⁶ These conversations often occur when the specific treatment decision needs to be made. Goals-of-care conversations are much easier to initiate and conduct when patients have already had a general ACP discussion and a more specific SIC.

Advance care planning, SICs, and GOC discussions are often emotionally charged and can be difficult for both patients and clinicians. There are some general communication tips that can be followed to help improve the success of these interactions (Box 2).

Team approach

Serious illness communication for patients diagnosed with cancer is a sensitive topic and can be challenging for family physicians to integrate into their practice, given the many other competing priorities that need to be managed. As well, cancer patients often have many health care professionals involved in their circle of care, making it difficult to know whose responsibility it is to initiate and lead these conversations. It is clear, however, that patients achieve deeper prognostic awareness and illness understanding when serious illness communication with their health care team occurs over time, in different settings (eg, oncology, primary care, palliative care), and with different disciplines (eg, medicine, psychology, chaplaincy, social work).¹⁷ Therefore, it is beneficial for family physicians to engage in these conversations with their patients, even if they just touch on small pieces across the continuum over multiple visits. It is the summation of many conversations that help patients with advanced disease learn how to express what is most important to them and make fully informed decisions regarding their care.¹⁷