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Palliative care: Issues in the intensive care unit in adults

Palliative care: Issues in the intensive care unit in adults
Authors:
Margaret L Isaac, MD
J Randall Curtis, MD, MPH
Section Editors:
Polly E Parsons, MD
Maria J Silveira, MD, MA, MPH
Christine Ritchie, MD, MSPH
Deputy Editor:
Geraldine Finlay, MD
Literature review current through: Dec 2022. | This topic last updated: Apr 06, 2022.

INTRODUCTION — Death in the intensive care unit (ICU) often occurs after an acute life-threatening illness or an exacerbation of a chronic life-limiting illness that led to intensive care treatment. In most cases, patients in the ICU die after life-sustaining treatments are withdrawn or withheld [1,2]. (See "Withholding and withdrawing ventilatory support in adults in the intensive care unit" and "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)

When asked, most patients express a preference to die at home [3-5], though logistical and medical issues frequently preclude this from happening, and sometimes these preferences may change [6]. Therefore, increasing attention is being focused on end-of-life care in the ICU setting. Despite many efforts to improve quality of care, evidence suggests that there is significant variation in quality across hospitals, although there is some evidence of significant improvement in palliative care provision in the ICU setting over time [7,8]. Overall, palliative care consultation in the ICU setting seems to be increasing, particularly for patients with cardiovascular disease [9].

This topic will discuss palliative care issues as they specifically apply to patients admitted to the ICU. Other topics in palliative care and the ICU are covered separately.

(See "Benefits, services, and models of subspecialty palliative care".)

(See "Communication in the ICU: Holding a meeting with families and caregivers".)

(See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)

(See "Withholding and withdrawing ventilatory support in adults in the intensive care unit".)

(See "Approach to symptom assessment in palliative care".)

(See "Palliative care: The last hours and days of life".)

RELATIONSHIP OF PALLIATIVE CARE TO END-OF-LIFE CARE — Palliative care focuses on preventing and relieving suffering for any patient facing serious illness. It can be initiated and administered concurrently with life-prolonging therapies [10]. End-of-life care is a subset of palliative care that occurs during the circumscribed period of time when curative or life-prolonging therapy may be no longer indicated or effective and patients are in their final hours, days, or weeks of life.

Regardless of where a particular patient is in their disease trajectory, palliative care aims to provide patients facing serious illness and their families, caregivers, and surrogates with the best possible quality of life, whether or not they die from this episode of illness. The primary tenets of palliative care are:

Symptom management

Elucidation of the patient's goals of care that are in keeping with their personal values and preferences

Consistent and sustained communication between the patient and all those involved in their care

Psychosocial, spiritual, and practical support both to patients and their caregivers

Coordination across sites of care

Further discussion on the benefits, services, and models for palliative care are discussed separately. (See "Benefits, services, and models of subspecialty palliative care", section on 'Definitions'.)

Comfort measures only — Patients facing the end of life in an ICU often transition from care aimed at prolonging life to care that is focused primarily on the alleviation of symptoms, or what is otherwise known as "comfort measures" or "comfort measures only." This refers to a philosophy of care focused exclusively on the treatment of symptoms. In the ICU, a transition to comfort measures only typically occurs after a patient intentionally foregoes or does not improve with life-sustaining treatments, or when life-sustaining treatment is felt to be medically inappropriate or futile. Usually, at the time someone is considered to be a candidate for a transition to comfort measures only, the ICU team and patient and/or caregiver have come to the conclusion that the underlying disease process cannot be stabilized or cured. For these patients, efforts should be made to minimize invasive and uncomfortable interventions, and care should be redirected toward the management of physical, psychosocial, and spiritual symptoms. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)

In some institutions, the term "comfort care" is used instead of "comfort measures only." However, in our opinion, "comfort care" can be confused with care focused on sustaining life or curing disease that is simultaneously aimed at managing a patient's symptoms. Therefore, we prefer the term "comfort measures only" when all available interventions are aimed exclusively on symptom management and quality of life. We acknowledge the term "comfort measures only" may be upsetting for some patients and caregivers who may not accept this approach or perceive this as a limitation in care. However, the clarity of the term has advantages over the less clear "comfort care." Each of these terms are also subject to variable definition and interpretation by patients, families, surrogates, caregivers, and providers, so thoughtful exploration and discussion around a plan of care beyond these broad phrases and terms is essential [11].

ICU ADMISSION FOR PALLIATIVE THERAPY — The utilization of ICU services specifically for palliative care purposes depends on both the institution's guidelines for intensive care and the patient's goals. While a relatively intensive level of care might be possible on acute care inpatient units at some institutions (including those with units specifically intended for patients), other institutions may only be able to provide these services in the context of an ICU. Some examples that may prompt admission to the ICU for these patients include:

Patients who experience an acute life-threatening event may be admitted to the ICU before there is a clear understanding of the patient's goals or likely outcomes as these relate to intensive care

Patients for whom symptom control requires a higher level of monitoring or one-to-one nursing

Patients for whom medications are recommended that cannot be given on a regular acute care inpatient unit (eg, palliative sedation) (see "Palliative sedation")

INDICATIONS FOR PALLIATIVE CARE REFERRAL — Individual studies have evaluated different consultation triggers when evaluating the impact of palliative care consultation in the ICU [12-17]. In general, patients who meet any of the following criteria may be appropriate referrals for palliative care consultation:

Chronic critical illness – Although there is no general consensus to what constitutes a chronic critical illness, it typically is characterized by an ICU stay longer than 5 to 14 days

Use of specific medical procedures in patients with life-limiting illness (eg, tracheostomy, percutaneous gastrostomy tube, extracorporeal life support)

Age ≥80 years

Presence of significant medical comorbidities or poor baseline functional status

History of chronic or incurable life-limiting illnesses (eg, metastatic cancer; advanced respiratory, cardiac, or renal disease; amyotrophic lateral sclerosis)  

Specific acute illnesses (eg, anoxic brain injury after cardiac arrest, intracerebral hemorrhage requiring mechanical ventilation)

Overall poor prognosis as determined by an attending physician  

Unmet palliative care needs among patients or family members, surrogates, and caregivers

For patients specifically admitted to a surgical ICU (SICU), the American College of Surgeons Surgical Palliative Care Task Force recommends palliative care consultation in the following situations [18]:

When requested by the patient, their surrogate decision maker, and/or family

In situations involving a conflict between the care team, the patient, their surrogates, and/or family (see "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults", section on 'Time pressured decisions')

Patients with an advance directive requesting limited interventions

Patients hospitalized for >30 days

Patients for whom clinicians believe life-sustaining treatments are medically futile or potentially inappropriate

Use of such criteria for palliative care consultation can decrease resource utilization in the ICU without affecting mortality, and improve access to palliative care services [16]. It is also important to understand that some patients or their caregivers who do not meet these criteria may have unmet palliative care needs [19].

PALLIATIVE CARE SERVICES IN THE ICU — The incorporation of palliative care in the intensive care unit (ICU) requires inter-disciplinary collaboration, with coordinated management provided by critical care specialists as well as palliative care consultants

Interdisciplinary palliative care consultants are becoming an increasingly available option across many health systems and their involvement in this setting is associated with multiple benefits, including [20-23]:

Improved symptom management

Increased utilization of hospice resources

Increased patient and caregiver satisfaction

Decreased ICU readmission rates following hospital discharge

Higher utilization of and transition to formal advance directives

Reduced moral distress and burnout among ICU clinicians  

Increased savings to the medical system

Models for palliative care provision — In general, three models of palliative care provision are described in the critical care literature [24,25]:

Consultative model – In the consultative model, palliative care specialists provide services directly to critically ill patients, but are not part of the primary ICU team. In general, consultations are sought for patients who are felt to be the most ill, have the highest palliative care needs, and/or have the poorest prognosis.

Integrative model – In the integrative model, palliative care is provided as part of the practice of critical care teams. Therefore, ideally all patients in the ICU with palliative care needs are provided with palliative care, not only those with only the poorest prognosis or with unmet palliative care needs [26].

Mixed model – In the mixed model, both consultative and integrative approaches are used simultaneously.

Systematic reviews from 2011 and 2021 evaluating interventions to improve communication in the ICU included studies involving palliative care consultants (as in the consultative model) as well as palliative care provided by critical care clinicians (as in the integrative model) [27,28]. This review found that several factors were associated with reduced family, surrogate, and caregiver distress; improved family, surrogate, and caregiver comprehension of diagnosis, prognosis, and treatment; and decreased utilization of intensive treatments at the end of life. These factors included access to palliative care consultants, provision of printed information, and regular, structured communication by the critical care team [27,28]. Palliative care interventions in the ICU and the associated outcomes that have been studied are highly variable, although improvements in length of stay and decisions regarding life-sustaining treatment and code status have been associated with both the integrative and consultative models of palliative care [27,28].

A randomized trial of palliative care-led family, surrogate, and caregiver meetings to discuss prognosis with family, surrogates, and caregivers of patients requiring prolonged mechanical ventilation found no significant improvement in families', surrogates', and caregivers' symptoms of anxiety and depression and a possible worsening in symptoms of post-traumatic stress disorder associated with the intervention [29]. Importantly, the palliative care specialists did not perform a formal palliative care consultation and they only led one or two family, surrogate, and caregiver meetings, often without the ICU clinicians present. Thus, the palliative care intervention was not very comprehensive. This study suggests that interventions to integrate specialty palliative care into the ICU must coordinate this care with the ICU team [30].

A randomized trial among critically ill patients and their surrogates found that a family-support intervention delivered by an inter-professional ICU team was associated with improved surrogate ratings of the quality of communication and the patient- and family-centeredness of care as well as a reduction in the length of stay compared with usual care [31]. The intervention was delivered by the ICU team with support from ICU nurses who were specially trained to promote regular inter-professional family, surrogate, and caregiver meetings and provide family, surrogates, and caregivers with emotional support between these meetings.

An end-of-life program that integrated patient-centered and family-, surrogate-, and caregiver-centered wishes for the dying was evaluated in a study called the three wishes project (3WP) [32]. The 3WP intervention involved an ICU clinician or team member eliciting three dying wishes for patients in whom a decision was made to withdraw life-sustaining treatments or in whom there was an estimated mortality >95 percent. There were several wish categories ranging from honoring the patient as an individual (eg, dressing in their own clothing) to family, surrogate, or caregiver connections (eg, unlimited visiting hours) and postmortem tributes (eg, sending a fruit basket to the home). The intervention was assessed as valuable by caregivers, providers, and administrative staff. The program required minimal financial investment and proved to be sustainable after study completion.

Interventions to increase palliative care provision in the ICU have been evaluated, including pre-rounds between the ICU and palliative care team [33], proactive identification of patients at high risk of dying [12], and the use of a palliative care needs checklist by the ICU team during ICU rounds [26]. However, further work is needed to ensure access to palliative care in the ICU given that a high proportion of ICU patients (approximately one in seven) meet common triggers for palliative care consultation [22].

Barriers — Despite data suggesting that access to palliative care services enhances quality of care in the ICU [27], palliative care is underutilized in the ICU setting at many institutions. Common barriers include:

A lack of awareness by ICU clinicians that these consultations are available or beneficial

A misconception that palliative care is only for patients who are actively dying

Limited availability of palliative care specialists

Additional barriers identified by clinicians include family, surrogates', caregivers', and patients' difficulty understanding or accepting a poor prognosis or accepting limitations on life-sustaining treatments; disagreement among family, surrogates, and caregivers about the goals of care; and patients' incapacity to make decisions about goals of care [34].

Data suggest that immigration status impacts end-of-life care. One study of over 47,000 Canadian immigrants reported that compared with long-standing residents, recent immigrants (<30 years) were more likely to be admitted to the ICU (25 versus 19 percent), die in the ICU (16 versus 10 percent), and receive more aggressive measures of care including mechanical ventilation (22 versus 13 percent), dialysis (6 versus 3 percent), feeding tube placement (6 versus 3 percent), and tracheostomy (2 versus 1 percent) [35]. Rates of ICU death varied among different nationalities but were greatest in South Asians and lowest in Western and Northern Europeans. Mortality risk was greatest in those who had immigrated most recently (<2 years). The analysis did not adjust for race, ethnicity, and English-speaking ability. Further studies are required to understand the mechanisms for this association, but underlying causes may relate to communication barriers, challenges in health literacy, and cultural differences in preferences for end-of-life care.

COMMUNICATION ISSUES — Because of the sensitive nature of issues related to palliative care, it is important that clinicians have a clear assessment of the patient and their ability to participate in conversations, particularly if goals of care are being discussed. In addition, issues related to advance care planning and surrogate decision making should be thoroughly explored.

Discussing end of life — Many people defer discussions of their preferences to a time when there is a decline in their health status. However, these conversations may be difficult or even impossible when a patient is acutely decompensating. Still, an anticipated or recommended admission to the ICU is an important opportunity to talk with patients about their hopes, fears, values, and goals at the end of life. Discussions should encompass the potential benefits and burdens of ICU-level of care as well as alternatives including care focused primarily on comfort and symptom management.

For patients admitted to the ICU who have not completed advance care planning, these discussions should occur early in an ICU stay and it may be helpful to use the framework of the "time-limited trial" of intensive care [36]. A time-limited trial (TLT) is defined as an "agreement between clinicians and a patient or family members or caregivers to use certain medical therapies over a defined period to see if the patient improves or deteriorates according to agreed-on clinical outcomes" [36]. TLTs can be helpful in giving clinicians additional information about prognosis and also in helping families and caregivers prepare for a possible transition in the goals of care. TLTs have been associated with a decreased length of stay in the ICU [37]. An effective TLT includes defined and measurable clinical or functional goals, a flexible timeline given that clinical courses can be uncertain and variable, and consistent implementation, particularly when clinicians rotate on and off services [38]. (See 'Advance directives' below and "Communication in the ICU: Holding a meeting with families and caregivers".)

Decisional capacity — Prior to any discussions regarding medical decisions, decisional capacity should be determined. Capacity can be established by bedside clinicians and does not require legal or psychiatric evaluation. However, capacity should not be presumed to be static across decisions of varying complexity or over time. For example, a patient may have the capacity to make one decision, but lack capacity to make a more complex decision. Assessment of decisional capacity in the intensive care unit (ICU) can be challenging and time-consuming, but it is extremely important. Barriers to capacity assessment may include intubation, sedation, delirium, or the presence of hearing impairment in the patient. Therefore, assessing decisional capacity is best done after solutions to these (or other) barriers are in place.

Decisional capacity should be distinguished from decisional competence (see "Legal aspects in palliative and end-of-life care in the United States"):

Decisional capacity is a clinical term that refers to a patient's ability to make medical decisions and applies to a specific decision.

Decisional competence is a legal term, requires judicial determination, and applies to all decisions.

Determining decisional capacity — The CURVES mnemonic can be helpful as a framework for assessing decisional capacity [39]:

Assess whether the patient can choose and can communicate a choice

Evaluate whether the patient understands the decision (including its potential risks, benefits, alternatives, and consequences)

Ask the patient to provide the reason for the decision made, which includes an evaluation by the clinician whether the rationale is coherently expressed and rational

Determine if the decision and rationale are consistent with the patient's previously expressed values

In the event the four criteria above are not met, clinicians should assess whether the situation constitutes a true emergency and/or whether there is access to a legal surrogate decision-maker. (see 'Surrogate decision-makers' below)

It can be very difficult to assess decisional capacity in a critically ill patient who has an endotracheal tube for respiratory failure. While patients without delirium may be able to nod and shake their head appropriately, full assessment of decisional capacity for a decision as complex as withdrawing life-sustaining treatment generally requires that a patient can write, use a word board, or use some other communication tool that allows careful assessment of their ability to understand and reason.

Advance directives — Advance directives (aka "living wills") are tools that can assist in the elucidation and documentation of the patient's values. They are generally completed in advance of critical illness by an individual in whom decisional capacity is not in question. There are some data to suggest that patients who make their wishes known in a living will are more likely to receive the care of their choosing [40-42]. Additionally, the presence of advance directives has been shown to improve family, surrogate, and caregiver ratings of the quality of the dying process and decrease the burden on surrogate decision-makers [43-46]. (See "Advance care planning and advance directives".)

Clinician orders for comfort measures or for limited interventions that are completed prior to hospitalization may reduce admission rates into the ICU. One retrospective cohort study of 1818 decedents who had chronic life-limiting illness, had completed Physician Orders for Life-Sustaining Treatment (POLST) form, and were admitted to hospital within six months before their death reported that 22 percent of patients had orders for comfort measures only, 42 percent had orders for limited interventions, and 36 percent had orders for full treatment [47]. Those with comfort measures and limited intervention orders were less likely to be admitted to the ICU than those with orders for full treatment (31 versus 62 percent). However, 38 percent of patients with comfort measures and limited intervention orders received treatments that were discordant with the prior order; this effect was more exaggerated in those who did not have cancer compared with those who had cancer (36 versus 23 percent) and in patients without dementia than with dementia (34 versus 21 percent). Despite study design limitations (eg, retrospective nature, limited generalizability), these data suggest that clinician orders regarding goals of care reduce unnecessary admissions to the ICU. A 2021 systemic review reported similar findings, namely, that having a POLST form setting limits on care intensity was associated with decreased delivery of high-intensity treatment and in-hospital death, particularly in prehospital care, though many hospitalized patients still received POLST-discordant in-hospital care [48]. More work needs to be done to understand the reason for the provision of care that is discordant with the order and provide tools to reduce such discordance, when appropriate.

Even if patients have an advance directive, surrogate decision-makers for patients with a serious life threatening illness often face challenging treatment choices that are not addressed in the living will. High-quality discussions about what is most important to patients promotes appropriate decision-making and patient-centered care. Understanding the patient's values, preferences, and care goals in the context of a serious illness allows clinicians to align the care provided with what is most important to the patient. Discussing goals of care is a unique skill that should be separated conceptually from talking about prognosis or delivering bad news. While discussions about goals of care may involve some of the same principles as other difficult communication tasks, these discussions demand a different framework. (See "Discussing goals of care".)

Surrogate decision-makers — When a patient lacks decisional capacity, a person close to them is frequently called upon to participate in medical decision-making in the critical care setting. In the absence of a designated guardian or durable power of attorney for health care (DPOAHC or healthcare proxy), clinicians rely on the legally defined "next-of-kin" to assist with medical decision-making. It is important that the physician identify the legal next-of-kin, rather than making the assumption that bedside caregivers are legal surrogate decision makers.

The order of priority for specific family members, surrogates, and caregivers varies somewhat by state and country. Of note, unless DPOAHC designation is given in an advance directive, committed partners may not necessarily be given "spousal" rights as a surrogate decision maker. This highlights the importance of completing a DPOAHC for such partners in advance. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Surrogate decision makers'.)

Surrogate medical decision-making for a critically ill patient is associated with high rates of anxiety and depression [49,50], particularly for patients with chronic critical illness [51]. In one study, 82 percent of families, surrogates, and caregivers of critically ill patients who were asked to participate in medical decision-making demonstrated symptoms of post-traumatic stress 90 days after patient discharge or death [52]. The task may be complicated by the surrogate's unfamiliarity with the medical environment (including the rapid pace of events that can occur in the ICU) and with complex medical decision-making processes in general, both of which can add to the challenge of functioning as a surrogate decision-maker. Studies suggest that the involvement of palliative care consultation services can mitigate this stress upon surrogates [45,53]. Structured support interventions are an evidence-based strategy to improve psychologic outcomes for caregivers as well. A recent randomized trial found that a structured three-step intervention for families or caregivers of patients dying in the ICU (a conference to prepare relatives for the patient's death, a support visit within the ICU room, and a meeting after the patient's death to offer sympathy and closure) was associated with lower rates of prolonged grief amongst the bereaved [53].

Guidelines have been issued by the American Thoracic Society on shared decision-making [54]. Details regarding the utility and process of shared decision-making during family/caregiver conferences in the ICU are provided separately. (See "Communication in the ICU: Holding a meeting with families and caregivers".)

Improving satisfaction — While satisfaction decreases with increasing length of ICU stay, it increases when the process of withdrawal of life-sustaining interventions is more than one day in duration [55] and when there are more family/caregiver conferences held [56]. This suggests that families, surrogates, and caregivers may be positively influenced by having more time and space to come to terms with medical decisions and with their own feelings of grief and loss. One way to ensure that families, surrogates, and caregivers have more time is to begin to address these issues early in the ICU stay. Additionally, family, surrogate, and caregiver satisfaction with decision-making can be increased through exploration of patients' wishes, direct recommendations by clinicians regarding withdrawing life support, when appropriate, and attention to families' spiritual needs [57,58]. Another study reported that a designated communication facilitator, whose role is to support communication between families, surrogates, caregivers, and clinicians, is associated with decreased family, surrogate, and caregiver depressive symptoms at six months and may also help to reduce cost and length of stay [30]. (See "Communication in the ICU: Holding a meeting with families and caregivers".)

ICU-SPECIFIC ISSUES IN PALLIATIVE CARE — While effective symptom management follows some universal principles, specific issues should be considered in patients receiving palliative care in the intensive care unit (ICU). These are discussed below. The approach to other symptoms for patients in palliative care is discussed separately (see "Overview of comprehensive patient assessment in palliative care" and "Approach to symptom assessment in palliative care"). Multifaceted quality improvement interventions which include interprofessional education and outreach, training of local champions, and coordination across institutions providing ICU-level care have been shown to improve process measures specific to palliative care in the ICU, including, but not limited to: identification of surrogate decision makers, attention to code status and advance directives, assessment of symptoms, and completion of multidisciplinary meetings with patients and/or surrogate decision makers [59].  

Symptom assessment in the ICU — Common symptoms in the critical care setting include pain, dyspnea, and thirst, as well as sleep disturbance and anxiety [60-63]. As long as patients are able to self-report, numeric rating scales (0 to 10) for pain, dyspnea, and thirst are appropriate in the ICU (table 1) [64-67]. For patients with a limited ability to communicate (eg, due to intubation), the clinician may use simple "yes or no" questions or use other cues such as facial expressions (eg, grimacing) or vital signs as well as the response to therapy to assess the presence and severity of symptoms [62,68,69]. However, symptom assessment in patients who are unable to communicate presents a particular challenge to clinicians in the ICU. When patients are unable to report their symptoms, validated tools, such as the Behavioral Pain Scale, the Critical Care Pain Observation Tool, and the Respiratory Distress Observation Scale can be used for objective assessment [68,70-72]. However, such tools should be interpreted carefully as they are an indirect representation of the patients' experience. Although preliminary data suggest surrogates (eg, family members, caregivers, nurses, and/or other clinicians) may be used as proxy reporters, further study is required to evaluate their influence on outcomes [73].

Symptom management in the ICU — Managing pain, dyspnea, and thirst in the ICU is similar to that in non-ICU patients. Suggested strategies for ICU patients are shown in the tables (table 2 and table 3 and table 4). Further discussion on specific symptom assessment and management in palliative and critically ill patients is discussed separately. (See "Sedative-analgesic medications in critically ill adults: Selection, initiation, maintenance, and withdrawal" and "Pain control in the critically ill adult patient" and "Overview of managing common non-pain symptoms in palliative care" and "Overview of fatigue, weakness, and asthenia in palliative care".)

Patients without decisional capacity — The approach to patients without decisional capacity takes into account whether the situation represents an emergency and whether a surrogate decision maker is available. (See 'Surrogate decision-makers' above.)

When it is a true emergency and there is no access to a surrogate decision-maker, clinicians generally should provide life-sustaining treatment under the principle of presumed consent. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Decision-making capacity'.)

If it is not an emergency and there is no access to a surrogate decision-maker, court-appointed guardianship should be pursued. However, there is variability in the guardianship appointment process by state, and clinicians are advised to review both policies within their institution and prevailing state and local statutes.

As discussed above, if there is an identified surrogate decision-maker, they should be relied upon to substitute for the voice of the patient, regardless of whether the decision is emergent or non-emergent.

Patients for whom life-sustaining treatment is withdrawn — For patients in the ICU for whom life-sustaining interventions are withdrawn, steps should be taken to maximize patient comfort and minimize any unnecessary interventions. We agree with consensus guidelines from the American College of Critical Care Medicine and suggest that clinicians [74]:

Provide clear and detailed communication with family members and caregivers regarding what to expect during the dying process.

Use language carefully to describe both the goals of care and any symptoms that may occur. As examples, phrases such as "withdrawal of care" and "agonal respirations" should be avoided. Instead, terms describing care as "withdrawal of life sustaining treatments" and "expected and irregular breathing patterns" are preferred.

Utilize a clearly delineated protocol for withdrawing life-sustaining treatments. This should include a careful review of all treatments with an aim to continue only those treatments that enhance comfort.

Provide a quiet and private space for patients, families, surrogates, and caregivers when possible.

Minimize noise, silencing alarms.

Avoid use of technological interventions that do not directly promote patient comfort.

Transfer patients after withdrawal of life support only when necessary; if required, this should be done following a careful discussion with the patient and their family or caregivers to ensure continuity of care.

Avoid the use of neuromuscular blocking agents at the time of withdrawal of life-sustaining interventions. These agents can promote the illusion of patient comfort, but provide no analgesic or sedative benefit and confound attempts to monitor a patient's symptom burden.

More issues related to the withdrawal of ventilatory support in the ICU are discussed separately. (See "Withholding and withdrawing ventilatory support in adults in the intensive care unit".)

CPR and families bearing witness — In general, it is appropriate to allow the family, surrogates, and caregivers to witness CPR should it occur. In the United States, public support for family, surrogate, and caregiver presence at resuscitation is strong, and several surveys show that the vast majority of family members, surrogates, and caregivers feel it is their right to be present, and want at least to be offered this opportunity [75-77].

Advocates for this approach feel that witnessing resuscitation may help loved ones in their bereavement process and foster a sense that all possible interventions were performed to try to save the life of their family member [78-81]. However, many clinicians have expressed concerns that family, surrogate, and caregiver presence during CPR may cause adverse psychological effects for family members, impact the performance of the resuscitation team [82], and raise significant ethical and legal questions [83,84].

The results of one randomized trial suggest that there may be a psychological benefit for families, surrogates, and caregivers who are present during a CPR event [85]. In this trial conducted in the field, emergency response units were randomly assigned to systematically offer family members, surrogates, and caregivers to observe CPR with the support of a resuscitation team member (chaperone) or to standard practice. Family members, surrogates, and caregivers who were offered the opportunity to witness CPR (performed out of the hospital) had a lower prevalence of PTSD-related symptoms, anxiety, and depression compared with those who were not offered the opportunity, and these psychological benefits persisted when the investigators reassessed family members, surrogates, and caregivers a year later [86]. In addition, family, surrogate, and caregiver presence during CPR had no effect on resuscitative efforts or interventions, patient survival, legal claims, or medical team stress [85].  

Procedure for families who wish to observe CPR — If a family, surrogate, or caregiver request to be present during CPR is accommodated, we suggest that a dedicated chaperone (eg, a social worker) be assigned to assist and support the family member, surrogate, or caregiver [81]. The WATCH mnemonic may provide some assistance to staff members functioning as family chaperones [78]:

Watch the family member's, surrogate's, or caregiver's behavior in the waiting room to determine if they are an appropriate candidate (ie, relatively calm without exhibition of aggressive actions or excessive display of emotions) to bear witness to the resuscitation

Ask the physician in charge for permission to invite the family member, surrogate, or caregiver into the resuscitation room

Tell the family member, surrogate, or caregiver about the patient's condition before they are taken into the resuscitation room

Caution the family member, surrogate, or caregiver to be prepared for what they will see and hear, that they may be distressed by what they witness and that staff will be available for questions

Help the family member, surrogate, or caregiver understand physician and nursing activities during the resuscitation

Open visiting hours — The notion of unrestricted visitation may present concerns to ICU staff, including worries about increased patient stress, and may constitute a perceived barrier to optimal care. Research has demonstrated that implementation of open visiting hours improves patient happiness and relaxation; family, surrogate, and caregiver satisfaction; and communication between patients, families, surrogates, caregivers, and staff [87-89], though may lead to higher levels of staff burnout. This may have particular relevance to the family, surrogates, and caregivers of patients at high risk of death. Many, if not most, ICUs across multiple countries continue to impose restrictions on visiting hours [90-92]. The COVID-19 pandemic has presented particular challenges to visitation, even for patients hospitalized with non-COVID-19 diagnoses. This lack of visitation for critically ill patients has been associated with decreased comprehension and increased distress among caregivers [93]. Hospitals have used novel interventions to mitigate these effects, including virtual visitation and dedicated family, surrogate, or caregiver liaison teams to facilitate communication [94].

Patients transitioning out of the ICU — While concerted efforts are being made to improve the quality of the dying experience in the ICU, most patients, when given the choice, prefer to die at home [3-5]. We support the wishes of patients who wish to transition out of the ICU, provided they are sufficiently stable to be transferred. However, multiple barriers usually exist which can prevent the transition of ICU patients to home or hospice including [95]:

The anticipated short life expectancy of critically ill patients who often do not live long enough to transition out of the ICU following withdrawal of life-sustaining interventions

The lack of the required level of support to care for a dying patient at home and ensure patient comfort

A heightened risk of dying while in transit

The cost of transport (many hospices will not pay for ambulance transportation home from the ICU)

Despite this, multiple case series highlight the satisfaction that some families, surrogates, and caregivers feel in being able to have their loved one die at home after discharge from the ICU [96,97]. In some cases, the withdrawal of life-sustaining interventions is deferred until after the patient has been transferred home [96,98]. The details depend upon the needs of the patient; the comfort of their family, surrogates, and caregivers with the plan; and the availability of appropriately trained hospice staff. Inpatient palliative care services can help determine the feasibility and logistics of a transfer home.

ADDRESSING RELIGION AND/OR SPIRITUALITY — Attending to the spiritual needs of the critically ill patient is associated with improved quality of life [99,100]. In fact, many patients view this as an important part of their overall medical care [101], although clinicians report many barriers to addressing spiritual needs: feeling they are ill equipped to respond to spiritual needs, feeling time constraints, and uncertainty regarding how to access spiritual care services [102]. For seriously ill patients in the intensive care unit (ICU), spiritual support should be offered by the spiritual service providers available at their institution.

A variety of types of spiritual caregivers may be available [103]; however, hospital-employed chaplains are uniquely positioned to address existential and spiritual suffering in patients, and to work alongside healthcare providers, helping to maintain the critical care team's focus on the patient as a whole person [104]. Chaplains hold graduate-level theological degrees and have completed advanced training, qualifying them to work with patients of all religious and spiritual traditions [105].  

Further discussion on religion and spirituality in this setting is covered separately. (See "Overview of spirituality in palliative care".)

STAFF SUPPORT — Caring for critically and terminally ill patients commonly leads to grief and burnout among clinicians and staff [106], and these serious issues have been further exacerbated by the stressors of the COVID-19 pandemic [107-109]. We support interventions to help mitigate burnout, including interdisciplinary conferences and opportunities to discuss and enhance the provision of interdisciplinary decision-making in the critical care setting [110].  

Interdisciplinary conferences about end of life care — Interdisciplinary team conferences focused on the care of patients with potentially life-limiting illness or patients who have already died can help clinicians deal with the affective toll this work can take [111-114]. These sessions (sometimes referred to as "death rounds") allow clinicians to process difficult encounters, build respect and collaboration across disciplines, learn more about end of life care, and provide closure for losses experienced in the course of clinical care.

Similarly, Schwartz Center Rounds are held at many hospitals across the US and provide an opportunity for staff to discuss emotional and psychosocial aspects of clinical work [115]. These sessions have been shown to decrease work-related stress and improve the ability of staff to cope with emotional and psychosocial aspects of patient care [116] and may be particularly helpful to staff caring for patients with life-threatening disease.    

Interdisciplinary collaboration — Providing healthcare to the critically ill is complex. Interpersonal conflicts between nursing and physician staff are associated with burnout and overall work stress, especially in the context of end of life care [117-119]. Close collaboration among members of an interdisciplinary team can improve communication among team members and result in a positive impact on clinicians, improve patient satisfaction [120,121], and lower rates of anxiety and depression symptoms for family members, surrogates, and caregivers of critically ill patients [49]. In addition, palliative care and ethics consultation can reduce family, surrogate, and caregiver distress; improve understanding of medical information; and decrease the use of intensive treatments in the intensive care unit (ICU) [27].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care" and "Society guideline links: Intensive care unit ethics".)

SUMMARY AND RECOMMENDATIONS

Introduction – Although most patients express a preference to die at home when asked, logistical and medical issues in critically ill patients frequently preclude this from happening. Therefore, increasing attention is focused on end of life care in the intensive care unit (ICU) setting. (See 'Introduction' above.)

Palliation versus end of life – Palliative care is appropriate for any patient with serious or life-threatening illness. (See 'Relationship of palliative care to end-of-life care' above.)

The phrase "comfort measures only" refers to a philosophy of care focused exclusively on the treatment of symptoms, and is reserved for patients with life-limiting illness who elect to forego (or no longer have the option of) life-sustaining treatments. We prefer the term "comfort measures only" instead of "comfort care" because the latter can be confused with care focused on sustaining life or curing disease that is simultaneously aimed at managing a patient's symptoms. (See 'Comfort measures only' above.)

Indications for palliation in the ICU – A palliative care consultation may be appropriate for any ICU patient who has a chronic critical illness, has an indication for specific medical procedures (eg, tracheostomy, percutaneous gastrostomy tube, extracorporeal life support), is ≥80 years old, had significant medical comorbidities or poor functional status at baseline, has chronic or life-limiting illnesses (eg, metastatic cancer), has specific acute illnesses with a poor prognosis (eg, anoxic brain injury, intracerebral hemorrhage requiring mechanical ventilation), or an overall poor prognosis as determined by an attending physician. There are also some patients with palliative care needs that are not identified with these criteria and screening for unmet palliative care needs should be considered. (See 'Indications for palliative care referral' above.)

Before patients are approached to make any medical decisions, decisional capacity related to the specific decision at hand should be determined.

Communication issues – While there is no clear evidence that standard advance directives alter care once patients are in the ICU, the presence of advance directives has been shown to improve families', surrogates', and caregivers' assessments of the quality of the dying process and decrease the burden on surrogate decision-makers. Furthermore, the process of advance care planning may be useful to help patients and their families, surrogates, and caregivers make more informed decisions. (See 'Advance directives' above.)

When patients lack decisional capacity, a person close to them is frequently called upon to participate in medical decision-making in the critical care setting. In the absence of a designated guardian or durable power of attorney for health care, clinicians rely on the legally defined "next-of-kin" to assist with medical decision-making. (See 'Surrogate decision-makers' above.)

ICU-specific palliation

For patients in the ICU for whom life-sustaining interventions are withdrawn, steps should be taken to maximize patient comfort and minimize any unnecessary interventions. (See 'Patients for whom life-sustaining treatment is withdrawn' above.)

In general, it is appropriate to allow the family, surrogates, and caregivers to witness CPR when they so wish, provided they have adequate support from the ICU team. (See 'CPR and families bearing witness' above.)

Religious and staffing issues – For patients in the ICU, the provision of spiritual support should be offered utilizing pastoral services available at each institution. (See 'Addressing religion and/or spirituality' above.)

We support interventions to help mitigate burnout, including interdisciplinary conferences and opportunities to discuss and enhance the provision of interdisciplinary decision-making in the critical care setting. (See 'Staff support' above.)

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Topic 83235 Version 25.0

References