The gap between goals and action

In hospital practice, establishing goals of care is an essential component of high-quality palliative care. Decisions about whether treatment should remain focused on life prolongation, shift toward comfort, or prioritize symptom relief are intended to align clinical interventions with the patient’s values, preferences, prognosis, and goals (Hui and Bruera Reference Hui and Bruera2016; Hui et al. Reference Hui, Hannon and Zimmermann2018, Reference Hui, Heung and Bruera2022). Yet establishing comfort-focused goals of care does not necessarily guarantee that comfort will become the immediate clinical priority when distress occurs.

This distinction becomes particularly important in the hospital environment. Rapid response systems are traditionally designed around physiological deterioration, with activation criteria based on changes in vital signs, oxygenation, consciousness, or other indicators of impending instability (Taguti et al. Reference Taguti, Dotti and Araujo2013). These systems are appropriate when the clinical goal is stabilization or reversal of acute deterioration. However, the meaning of an emergency may change when the goals of care have already shifted.

For a patient whose goals of care are comfort-focused, severe dyspnea, uncontrolled pain, terminal agitation, or other forms of symptom distress may represent a clinical emergency even when conventional physiological criteria for rapid response are not met. The absence of a physiological emergency does not mean the absence of suffering.

This creates a gap between knowing what the patient’s goals of care are and being prepared to act on those goals when suffering occurs. Documentation of goals of care is necessary, but documentation alone does not ensure that the clinical environment can translate those decisions into timely bedside action (Stawiarski et al. Reference Stawiarski, Priyadharshini Jeyashanmugaraja and Edwards2021).

When suffering becomes the emergency

Palliative care has increasingly emphasized timely, individualized approaches to referral and integration throughout the trajectory of serious illness (Hui and Bruera Reference Hui and Bruera2016; Hui et al. Reference Hui, Hannon and Zimmermann2018, Reference Hui, Heung and Bruera2022). However, timely access to specialist palliative care does not eliminate every episode of acute symptom distress. Some patients experience sudden and severe symptoms after a comfort-focused plan has already been established. In these situations, the challenge is not necessarily to reconsider the goals of care but to ensure that the existing goals can guide immediate clinical action.

This experience led our institution to reconsider a basic assumption embedded in conventional rapid response systems: that urgency is primarily defined by physiological instability. For patients receiving comfort-focused care, urgency may instead be defined by the intensity of suffering and by the clinical goals that have already been established. These 2 concepts are not contradictory; they correspond to different therapeutic aims.

The question therefore changes. Rather than asking only whether the patient is physiologically unstable, clinicians may also need to ask whether the patient is experiencing distress that requires an immediate response consistent with the established goals of care. This shift is subtle, but clinically meaningful. It moves the focus from deterioration as the sole trigger for urgent action toward suffering as a legitimate clinical priority.

The comfort code as an organizational response

This perspective led to the development of the Comfort Code in our institution: a symptom-triggered response pathway designed for patients who already have established comfort-focused goals of care (Frutig et al. Reference Frutig, Stein and Farias2025). The pathway was developed collaboratively by palliative care, nursing leadership, intensive care, emergency physicians, and rapid response professionals. Its purpose was not to create another mechanism for changing treatment decisions or replace specialist palliative care, but to provide an organizational bridge between an established clinical decision and the moment when a patient develops uncontrolled suffering.

The process begins with specialist palliative care assessment and documentation of comfort-focused goals of care. A Comfort Code prescription functions as an organizational signal that, if significant symptom distress develops, the immediate priority is symptom-directed care rather than physiological stabilization at all costs. Nursing professionals can activate the pathway when symptoms become uncontrolled, including new or worsening dyspnea, uncontrolled pain, active bleeding, refractory vomiting, delirium or agitation, or other significant physical distress. The rapid response team or designated physician then assesses the patient, reviews the established goals of care, and initiates appropriate comfort-focused measures.

The significance of this structure is not that it introduces a new treatment. Rather, it creates a shared clinical response to a situation that can otherwise remain ambiguous: a patient may be visibly suffering without meeting the conventional criteria for a rapid response. The Comfort Code makes that suffering actionable within the existing hospital system.

Two clinical moments

Consider a patient with advanced illness whose goals of care have been discussed with the family and documented as comfort-focused. During the night, the patient develops severe dyspnea and increasing respiratory distress. Oxygen saturation may not change dramatically, blood pressure may remain stable, and the patient may not meet the usual criteria for a conventional rapid response activation. Nevertheless, the patient is visibly suffering.

In this situation, waiting for physiological deterioration before mobilizing additional clinical support would be inconsistent with the established goal of care. The Comfort Code provides a mechanism for the nurse to recognize dyspnea itself as the reason for urgent intervention. The response can then focus on symptom relief, reassessment of comfort, and alignment of immediate interventions with the previously established plan.

A similar situation may occur with pain. A patient with advanced cancer and a comfort-focused plan may develop sudden, severe pain that is not adequately controlled by the existing medication regimen. The patient may be hemodynamically stable and show no conventional marker of acute physiological deterioration. Yet uncontrolled pain represents significant suffering and requires an immediate clinical response.

Here again, the clinical question is reframed. Instead of asking only, “Is this patient physiologically unstable?,” the team asks, “Is this patient experiencing significant distress that requires immediate symptom-focused intervention?” The appropriate response may include pharmacological and non-pharmacological measures, reassessment of the clinical situation, and, when indicated, consideration of advanced palliative interventions (Cherny and Portenoy Reference Cherny and Portenoy1994; Cherny Reference Cherny2014; Mercadante et al. Reference Mercadante, Gregoretti and Cortegiani2018; Crawford et al. Reference Crawford, Dzierżanowski and Hauser2021).

Impact on clinical practice

The experience of developing the Comfort Code raises a broader question about how hospitals define urgency. In conventional rapid response systems, urgency is primarily associated with physiological instability. In comfort-focused care, however, urgency may also be defined by the intensity of suffering and the patient’s goals of care. Recognizing this distinction does not diminish the importance of physiological assessment; it expands the clinical lens through which urgency is understood.

This has particular implications for practice. Nurses are often closest to the patient when symptoms escalate and may be the first professionals to recognize that the level of suffering is inconsistent with the established goals of care. A symptom-triggered pathway gives that assessment an explicit role in activating an institutional response. It also provides a shared language through which nurses, physicians, rapid response teams, and palliative care professionals can translate an individualized decision into coordinated bedside action.

The experience also suggests that documentation and action should not be treated as separate stages of palliative care. A documented comfort-focused goal is meaningful only when the surrounding clinical environment is prepared to respond consistently to what that goal means when symptoms become acute. The pathway therefore addresses an organizational problem as much as a clinical one: how to make an established decision visible and actionable across professional boundaries.

Importantly, the Comfort Code is not a substitute for specialist palliative care. Specialist teams remain essential for complex assessment, communication, prognostic discussions, symptom management, ethical deliberation, and ongoing goals-of-care planning (Hui and Bruera Reference Hui and Bruera2016; Ferrell et al. Reference Ferrell, Temel and Temin2017; Hui et al. Reference Hui, Hannon and Zimmermann2018). The pathway addresses a different moment: what happens at the bedside when suffering becomes acute after the broader goals of care have already been established.