Goals of care discussions pose unique and sizeable challenges for neuroscience intensive care unit (neuro-ICU) patients, their families and/or surrogate decision-makers, and clinicians. The integration of palliative care principles into the everyday practice of advanced practice clinicians (APCs) in the neuro-ICU is a core skill that includes an appreciation for the nuances of neuroprognostication, shared decision-making with surrogates, best practices for family meetings, and proper management of medical issues for patients whose care is ultimately transitioned to comfort measures only.

“Palliative care” and “hospice care” share some key and notable features, primarily that they are interdisciplinary, holistic approaches to patient care that stress symptom palliation, mental and spiritual wellness and quality of life, and care coordination and social work involvement for patients and their families [18]. “Palliative care” and “hospice care,” however, are not interchangeable terms and are separate entities with important distinctions. Palliative care refers to an interdisciplinary model of care meant to be implemented at any stage after a patient is diagnosed with a serious illness [18]. This model aims to improve quality of life by emphasizing management of physical and mental symptomatology, focusing on early identification of goals of care and alignment of treatment plans with those goals, and integrating care coordination, social work, and spiritual care to support patients and their surrogates [18]. Thus, palliative care should ideally be employed simultaneously with ongoing maximal medical management as a patient’s goals of care are being assessed.

In contrast, “hospice care” specifically refers to the care and symptom management of terminally ill patients who have discontinued curative treatments and who have a life expectancy of 6 or fewer months. These criteria are used by Medicare and other insurance entities to determine whether patients are eligible for a specific hospice benefit [18].

To address a patient’s goals of care properly, accurate prognostic information is an initial fundamental necessity [8]. However, in many cases, prognostication is intrinsically uncertain in neurologic disease and may include consideration of a range of relevant outcomes [11]. Outcomes of particular interest include how long a patient will live, what a patient’s cognitive and physical function will be if they survive, and over what timespan a patient might accomplish certain improvements [15]. Prognostication can be complicated by self-fulfilling prophecies in which a high, but not certain, risk of death or disability leads to treatment limitations and subsequent death or disability when implementation of interventions might have precluded a progression to that state [11].

Because early intervention can greatly influence a patient’s trajectory and outcome and because of the difficulty, uncertainty, and potential biases and self-fulfilling prophecies associated with prognostication in neurocritical care, providing a minimum of a 24-to-72-h period of maximum intensive care is usually judicious, except in extreme circumstances when a poor outcome is essentially guaranteed and when pursuing aggressive care would definitely be inconsistent with a patient’s known wishes [10, 23]. This 24-to-72-h period allows for serial evaluations that can facilitate greater accuracy and certainty in clinical decision-making [23].

Clinical grading scales in neurocritical care, based off of clinical and radiographic variables on admission, can help provide an initial measure of the severity of a neurocritical illness. The prognostic utility of these scales and their role in clinical decision-making, however, are constrained by multiple factors, including that their calculated values represent only a single point in time on admission and incorporate no subsequent assessments to account for improvement or deterioration. The outcomes literature associated with many scales in common use has not been updated recently [23].

Furthermore, prognostication for any single patient cannot rely solely on a clinical disease scoring scale and must incorporate additional details regarding a patient’s characteristics, including comorbidities and baseline functional status [10, 23].

For those neuro-ICU patients determined to have a poor or uncertain prognosis, shared decision-making (SDM) – a collaborative process of sharing information and making value-based decisions undertaken by providers and patients (or surrogates) – is broadly regarded as the preferred decision-making model with respect to goals of care planning [19]. In general, treatment preferences for largely value-based decisions are influenced by the burden that a proposed treatment entails, the likely effect of the treatment, and the probability of a given treatment outcome [9]. Treatment burden is a function of its duration and invasiveness [14].

Supporting surrogates throughout the decision-making process is important because it promotes the patient’s best interests and because the decision-making process can burden surrogates, who are at risk for developing post-intensive care syndrome-family (PICS-F), a composite of long-term anxiety, complicated grief, depression, and posttraumatic stress disorder [16].