18.1 Defining Palliative Care

Originating mostly in the world of oncology, palliative care has matured into a wide-ranging field aimed at improving the quality of life of all patients and their families facing the problems associated with life-threatening illnesses. Palliative care aims at preventing and relieving physical, social, psychological, and spiritual suffering. Components of palliative care vary based on the setting, but generally include (1) relationship and rapport building with patients and family members; (2) addressing and managing physical, social, psychological, and spiritual symptoms; (3) eliciting patient and family values; (4) interpreting and communicating information about the patient’s illness, prognosis, and treatment options and ensuring understanding; (5) helping patients and families to cope with life-altering circumstances and preventing or managing grief; (6) identifying and resolving conflicts, either between family members, between different medical team members, or between family and medical teams; (7) assisting with goal setting and advance care planning; and (8) hospice referral and discharge planning.^{1, 2} Palliative care can be provided to patients and their families in any setting and at any time during the course of an illness, and may be offered alongside curative treatment.

Palliative care needs in the intensive care unit (ICU) setting are substantial. Not only does one in five Americans die in the ICU,³ but survivors of critical illness report a high symptom burden, including pain, difficulty communicating, dyspnea, hunger, and confusion.^{4, 5} After ICU discharge, patients continue to have higher rates of mortality and may suffer from functional limitations and poor health-related quality of life.^6–8 Patients often lack the capacity to participate in medical decision-making, requiring the involvement of surrogate decision makers, who may have their own palliative care needs. These individuals have a high burden of adverse psychological outcomes even long after the ICU stay, owing to the burden of decision-making, caregiving, and complicated grief. As a result of all of these factors, efforts to integrate high-quality palliative care into intensive care have the potential to benefit all ICU patients and their families.

18.2 Primary and Specialist Palliative Care

The framework of the palliative care approach describes the care that patients and their families receive, rather than the clinician or team providing this care. This approach aims to ensure that patients receive palliative care as they need it, across a wide range of settings, including the home, outpatient, inpatient, and hospice settings. It is based on the idea that palliative care, like any subspecialty, includes certain skills that all health-care providers should possess as well as more specialized skills that require dedicated training.

The palliative care approach encompasses what are often referred to as “primary” and “specialist” palliative care. “Primary palliative care” is that provided by the primary medical team (i.e., the intensivist for a patient hospitalized with acute respiratory distress syndrome). These are the providers leading the patient’s medical care and providing the patient and their family with medical information about the patient’s present illness, prognosis, and available treatment options. The primary team is responsible for the identification of palliative care needs and basic management of distressing symptoms. In most cases, the primary team should also take the lead on shared decision-making: ensuring illness understanding, eliciting the patient’s treatment preferences and values, and recommending courses of treatment tailored to those preferences and values — or, in the case of patients who lack decision-making capacity, supporting surrogates to provide substituted judgment. Table 18.1 provides a list of these and other primary palliative care skills.

In ICU settings, palliative care may also be provided by palliative care specialists in the role of a consulting team, which typically includes physicians and advanced practice registered nurses and may also include social workers, chaplains, physician assistants, nurses, pharmacists, and/or psychologists.¹⁰ Palliative care consultants are often called upon by the primary team in cases of uncontrolled symptom distress, for conflict resolution and mediation, for assistance with particularly complex goals-of-care discussions, or when planning transitions of care.

The availability of palliative care services in the United States continues to grow. As of 2016–2017, according to the Center to Advance Palliative Care’s 2019 report card, palliative care programs (broadly defined) were available in 72% of U.S. hospitals with 50 or more beds. Significant regional variation persists, however, i.e., only 17% of rural hospitals with 50 or more beds reported having palliative care programs.¹¹

18.3 Models of Palliative Care Involvement in the ICU

Efforts to integrate palliative care into intensive care may be classified as consultative and integrative models. Consultative models bring palliative care consultants into the ICU to interact with patients and family members. Integrative models embed palliative care principles and interventions into daily ICU practice, but only ICU personnel interact with patients and families. Many of these interventions have been evaluated in the ICU setting.^{12, 13} These two types of models are not mutually exclusive, and a mix of the two is common in clinical practice.

18.4 Consultative and Integrative Models

Consultative models provide palliative care services to select ICU patients, and their effectiveness has been fairly well-studied. A series of before–after, single-center trials of such consultative models have suggested an association between palliative care consultation with decreased ICU length of stay,^14–18 lower hospital costs,¹⁹ earlier initiation of do-not-resuscitate orders and withdrawal of life support,¹⁷ and increased family satisfaction with the hospital experience and decision-making process,²⁰ with no difference in hospital length of stay, length of stay from ICU admission to discharge, or mortality.^{14, 17, 18}

In many so-called integrative models, critical care teams incorporate palliative care principles and interventions for all patients and families in the ICU.¹² A substantial source of stress among family members of critically ill patients is the burden of surrogate decision-making, which may be measured as symptoms of anxiety, depression, and post-traumatic stress disorder. Many integrative models aim to improve communication between ICU providers and families, providing both emotional and informational support to surrogates as they navigate treatment decisions. For example, providing family members with printed informational brochures and decision aids has been shown to improve their comprehension.^{21, 22} Connecting family members with specialists trained to facilitate communication (such as social workers or ICU nurses) has been associated with higher rates of do-not-resuscitate/do-not-intubate and comfort care only status, as well as higher rates of decisions to treat the patient aggressively,²³ suggesting that the intervention, importantly, served to clarify treatment preferences. Communication facilitators have also been associated with higher physician and surrogate ratings of communication,^{24, 25} decreased depressive symptoms at 6 months, lower ICU costs,²⁶ and decreased ICU length of stay.^{25, 26} One study found increased rates of hospital death but no difference in death at 6 months.²⁵ An alternative integrative approach focuses on standardizing family meetings. Standardizing the meeting structure has been associated with reduced family member post-traumatic stress disorder,²⁷ while ensuring that family meetings occur within 72 hours of ICU admission has been associated with decreased mortality, decreased ICU length of stay, and fewer days when there was disagreement on the long-term disposition goal between ICU providers and between ICU providers and families.^{28, 29} Other integrative interventions include palliative care-related clinician education, family presence on rounds, and standardized palliative care-related order sets.¹²

A systematic review comparing consultative to integrative models of palliative care interventions in the ICU found insufficient evidence to favor one approach over the other.¹² Both models have potential disadvantages. Implementation of an integrative model requires ICU teams to take on extra duties, which may be particularly challenging in open ICU models, where many providers of different specialties would require training on a given intervention. Consultative models, meanwhile, require hiring and training of new personnel, which may not be feasible at many centers.¹² Additionally, some have raised concerns that excessive reliance on specialist palliative care could fragment care; undermine existing therapeutic relationships between primary providers, patients, and families; and decrease incentives for primary providers to develop palliative care skills.³⁰