Communication in the ICU: Holding a meeting with families and caregivers of adult patients

INTRODUCTION — 

Family/caregiver meetings are integral to patient care in the intensive care unit (ICU). ICU-related issues regarding conducting a family/caregiver meeting will be reviewed here. Throughout the discussion, "family" refers to any person of importance in the patient's life who might attend a conference related to the patient's care whether they are related or not.

Informed consent, withdrawing ventilatory support, and responding to requests for inappropriate therapies in the ICU are discussed elsewhere.

●(See "Informed procedural consent in the intensive care unit".)

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

●(See "Responding to requests for potentially inappropriate or futile therapies in adult intensive care unit".)

●(See "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit".)

Our approach is largely in accordance with guidance issued by several international societies [1-5].

FAMILY/CAREGIVER MEETING GOALS — 

During meetings, we aim to communicate honest, intelligible, and timely information to family/caregivers [1,6-10]; understand the patient's goals and values; and help provide guidance to ensure that the care provided aligns with what is important to the patient. We also seek to minimize caregiver distress by ensuring they are satisfied with the information provided and that they feel heard, understood, and supported.

Establish goals of care — We engage in discussions with the family/caregiver regarding the patient's previously stated wishes. We try to help them think about what the patient would find important to facilitate shared, surrogate decision-making [11,12]. Further details regarding discussing the patient's wishes are provided separately. (See "Responding to requests for potentially inappropriate or futile therapies in adult intensive care unit", section on 'Initial evaluation to establish goals of care' and 'Goals of care: ICU-specific issues' below.)

Adequate family/caregiver satisfaction — Good communication facilitates earlier recognition of how the illness is affecting the family/caregiver and establishes a cooperative patient-focused style of care. It also offers an opportunity to correct any misunderstanding that the family may have about what is wrong with the patient and ensures they understand the medical plan. Factors that have been associated with family/caregiver satisfaction in communication with intensivists are shown in the table (table 1) [13].

Data suggest that families/caregivers are dissatisfied with communication in the ICU. As examples:

●Several observational studies report that up to 30 percent of family/caregivers feel dissatisfied with communication in the ICU [14,15].

●Additional data suggest that <50 percent of family/caregivers understand the patient's diagnosis, prognosis, or treatment after an initial meeting with an attending clinician [16,17].

●Several studies have also shown that clinicians rarely ask about the patient's goals, educate the family/caregiver about their role as decision-makers, or explain their decision in terms of the patient's values [18]. Contributing factors include inadequate time spent communicating with clinicians, lack of consistent information, information provided by multiple healthcare providers, and underrecognition of poor family/caregiver comprehension [19].

Minimize psychological distress — Our communication strategy recognizes that the family/caregiver experience is one of uncertainty, helplessness, emotional turmoil, and stress [20-25]. During meetings, family/caregivers need support, comfort, knowledge (diagnostic and prognostic), reassurance, and hope. (See 'Meeting procedure' below.)

Limited data support other stress-reducing strategies including obtaining an advance directive or a do-not-resuscitate (DNR) order, effective family/caregiver involvement in decision-making, the presence of a communication facilitator, informational booklets, and engaging in daily care rituals [26-28]. Additional data are provided below. (See 'Outcomes' below.)

Data suggest that up to two-thirds of family/caregivers experience anxiety, depression, and/or posttraumatic stress disorder [20,21]. Stress may continue following discharge, a condition known as post-intensive care syndrome (PICS)-family. Further details regarding PICS-family are provided separately. (See "Post-intensive care syndrome (PICS) in adults: Clinical features and diagnostic evaluation", section on 'Post-intensive care syndrome-family'.)

Risk factors for distress among family/decision-makers include the following [20,22-25]:

●Sudden death (rather than active withdrawal of care)

●A passive decision-making role

●Receipt of perceived contradictions in information

●Poor communication by the clinician

●Death of a young loved one

●Discordance among family/caregivers regarding decision-making

PREPARATORY STEPS

Timing — We agree with guideline groups that suggest scheduling a formal, interdisciplinary family/caregiver meeting within the first one to three days after admission, the earlier the better [29-31]. Earlier and additional as-needed discussions may also be of value in the following situations:

●When the patient is first admitted to the ICU

●When there is a major change in the patient's medical status

●When conflict is present among family/caregivers, between the patient and family/caregiver, or between the family/caregiver and clinicians

●At prespecified times to follow up on a time-limited trial

●When the current treatment plan is thought unlikely to achieve its goals

●When the family/caregiver requests a meeting or a change in the focus of care

This approach is supported by data that suggest early discussions increase family/caregiver satisfaction, reduce the length of ICU stay, and increase the likelihood of achieving consensus between the providers and the family/caregiver when care should be limited or withdrawn (table 1). (See 'Adequate family/caregiver satisfaction' above and 'Outcomes' below.)

Despite this consensus, the available data suggest that less than half of patients actually have a family/caregiver meeting by day 3 of the ICU stay (range 8 to 50 percent) [32].

Participants — We invite participants relevant to the patient from both a personal and healthcare perspective.

●Family/caregivers – We make inquiries (typically from the surrogate or social worker) about who should attend (eg, relatives, partners, friends, spiritual counselors, healthcare relatives and friends of the patient), ensuring that no important individuals are omitted ("open" invitation).

However, if a previously competent patient expressed prior wishes that certain people not be included, these wishes should be honored. For those unable to attend in person, offering to include them by telephone or teleconferencing is prudent. We emphasize that having everyone hear the same information decreases misunderstandings and allows nonbiased expression of varying views [33], regardless of internal conflict.

●Healthcare participants – It is important to invite all relevant healthcare staff to the meeting.

•ICU and trusted outpatient clinicians – Ideally, both a clinician from the ICU team as well as any trusted outpatient clinician (eg, primary care physician, oncologist, pulmonologist) should be present. If not feasible, a pre- and postmeeting call to engage the patient's key outpatient provider(s) is reasonable.

If there is more than one family/caregiver meeting, we prefer to have the same clinician serve as the facilitator since continuity of care is important for family satisfaction [34]. However, this may not always be practical due to scheduling conflicts.

Evidence suggests that bad news is better received and increases family/caregiver satisfaction when it is delivered by the primary care clinician unless the specialist has a prior relationship with the patient [20,35]. It is unclear whether this applies in an ICU where the critical care attending clinician is involved in the day-to-day care of the patient and typically has more expertise with the patient's illness. (See "Discussing serious news".)

•Ancillary staff – Nurses play a supportive role that reinforces information between meetings, provides support for decision-making, and facilitates emotional processing when the news is bad [36,37]. Nurses see their involvement in family/caregiver meetings as very important to the quality of patient care, but they also identify barriers to being involved including a need for more training and not being asked for their perspectives [38]. The value of nursing involvement in reducing family/caregiver outcomes is discussed below. (See 'Outcomes' below.)

Social workers can be helpful with family dynamics and individual coping mechanisms.

Spiritual counselors can help with family/caregiver support and discussion of spiritual, existential, and religious issues, especially those surrounding end-of-life discussions [39].

The value of ancillary staff involvement in improving family/caregiver outcomes is discussed below. (See 'Outcomes' below.)

•Palliative care – Palliative care specialists provide multidisciplinary support for patients and their families/caregivers to help address physical, psychological, spiritual, and social suffering. They can be particularly helpful when conflict or other factors make decision-making problematic. Data suggest that palliative care specialists communicate differently than intensivists, using fewer task-focused statements and more relationship-building statements [40], which may be associated with better outcomes. (See 'Outcomes' below.)

Location — When feasible, we typically hold meetings in a comfortable private room and set aside time. All measures should be taken to ensure that the meeting is not interrupted, such as adjusting pagers to vibrate. We arrange seating to avoid having the healthcare professionals and family/caregivers on opposite sides of the room. We prefer that clinicians be seated to create the opportunity to talk and listen. Tissues should be available. (See "Discussing serious news", section on 'Preparation and setting'.)

Method (in-person, telephone, or video) and language — While most meetings are in-person, sometimes telephone or video meetings are necessary. During COVID-19, telephone and video communication were common. Research suggested that in-person communication was preferred by all contributors for important conversations [41], although caregivers felt empathy was successfully conveyed via telemedicine. Suggested strategies for phone/video meetings included frequently checking the understanding of individuals involved and, if feasible, including the patient on camera and offering time for the family/caregiver and patient to interact without clinicians participating.

When native languages differ from a communicator who is not fluent in that language, we use an interpreter (in-person, telephone, or video). While an interpreter lengthens the meeting, it allows back-and-forth conversation and likely ensures that the medical information is explained and understood. We avoid using a family member/surrogate as an interpreter since this may place a burden on the family member, especially during conversations concerning poor prognosis, and translated content is not ensured. (See "The patient's culture and effective communication", section on 'Language and literacy'.)

Premeeting — In advance of a meeting, we hold a premeeting with all involved clinicians with a focus on the following (see "Discussing serious news", section on 'Preparation and setting'):

●Reaching an agreement about the major medical issues involved in a patient's care including the results of and plans for diagnostic testing (see 'Diagnostic information' below) as well as current and potential therapeutic options (see 'Therapeutic information' below)

●Discussing the likely prognosis (see 'Prognosis' below)

●Agreeing on an agenda and goals for the meeting

●Defining roles in the meeting (eg, who will lead)

●Understanding what is already known about family/caregiver advance care planning, values and preferences, goals of care, and cultural or spiritual beliefs (see 'Goals of care: ICU-specific issues' below)

In addition to the premeeting, the clinical situation may need to be discussed with other healthcare clinicians, consultants, and ancillary staff (eg, nursing, social work, spiritual counselors, translators) involved in the patient's care. This may require several phone calls or a separate meeting. We also ask the family/caregiver to develop a list of questions that they want answered, which can empower them during the meeting [42].

The premeeting assesses the degree to which the healthcare team is in alignment, addresses any differences of opinion in advance, and provides a better understanding of family/caregiver relationships and beliefs [20,43-45]. Any clinician differences of opinion that persist should be communicated in a balanced and respectful manner to the family/caregivers. One study found that 25 percent of families perceive that they are receiving inconsistent information from different providers resulting in difficult decision-making and dissatisfaction [43].

The premeeting is poorly studied, although a communication skills training program focused on the premeeting resulted in greater discussion of prognosis [46].

MEETING PROCEDURE — 

Family/caregiver meetings involve complex interactions between multiple parties. We aim to allow all participants adequate time to speak during the meeting and try not to have one party dominate the discussion [47]. Data suggest that physicians talk for about 80 percent of the duration of both premeeting huddles [48] and actual meetings [49]. Additionally, while often physicians rate collaboration at meetings as good, other team members do not always agree [48]; this suggests that giving more time to other healthcare professionals and the family/caregiver to express their emotions and ask questions is important.

Many ICU teams invite family/caregivers to morning rounds [50] or develop web-based mechanisms to keep family/caregivers informed [51]. Data suggest that such rounds are valued by families and lead to increased satisfaction [50,52]. How these methods are best integrated with formal family meetings is not yet studied [52].

General principles — We consider the following principles for each meeting:

●Number of meetings – Multiple short meetings may be better than one long meeting. The first meeting may be enough to provide an idea of what is wrong with the patient and the plans for therapeutic interventions. The next meeting may focus on progress and prognosis. Additional meetings might address the possibility of transitioning to a palliative approach if things are going badly.

●Language used – To ensure the information is understood by the family/caregivers, we use seventh-grade level language and as little medical jargon as possible. We further modify the information based upon the family/caregiver's understanding and communication style; for example, some attendees may have a doctor or medical healthcare professional present.

●Amount of information divulged – When family members or caregivers are under stress, their ability to understand large chunks of information at one time diminishes. A rule of thumb is not to give more than three pieces of information without stopping and checking comprehension.

●Reading the room – We pick up on subtle clues regarding family/caregiver dynamics during the meeting (eg, who sits or stands; how interactions are among each participant; how respectful, empathic, or dismissive they are to each other; whether they talk about themselves; whether they focus on a specific issue). However, we do not try to correct what we believe are dysfunctional family/caregiver dynamics and stay neutral in internal disputes.

●Impact of clinician beliefs – Clinicians need to consider their own beliefs and emotional reactions to the patient and the family/caregiver. Evidence suggests that a clinician's unacknowledged fears of loss and death are a barrier to emotional engagement with patients facing death [47,53]. The longer that a clinician knows a patient, the more likely they will be to inaccurately predict their prognosis [54]. Additionally, a clinician's belief that continuing life-prolonging care is most appropriate has been associated with not even offering the family/caregiver the option of comfort care, even an average of two weeks into an ICU stay in a population with a >70 percent mortality [55].

●Cultural issues – Patients, families, and caregivers have a variety of attitudes toward discussing life-threatening illness and death across cultural boundaries. We take into consideration a patient's cultural background and beliefs since inherent bias may interfere with the communication process [56,57]. We do not make assumptions and inquire as to how much and what type of information is desired in order to tailor the approach to information disclosure. This is discussed in detail separately. (See "Cultural aspects of palliative care", section on 'Attitudes about discussing serious illness and death'.)

Evidence that clinicians approach surrogate decision-makers differently based on race suggests that bias may play an important role in the process. For example, one post hoc analysis used data from a randomized trial in the ICU that examined the role of a decision-aid in patients undergoing prolonged mechanical ventilation to investigate the impact of race on shared decision-making behaviors during family/caregiver meetings [58]. In general, ICU physicians appeared to approach both Black and White families/caregivers similarly (eg, discussion of information and prognosis) but provided less validation about those decisions to Black families/caregivers (27 versus 50 percent). The latter may have implications for emotional support following ICU meetings.

The role of culture in communication and decision-making is discussed in detail separately. (See "The patient's culture and effective communication" and "Cultural aspects of palliative care".)

Sharing clinical information

Introductions — We start the meeting by having all attendees introduce themselves. Introductions should include name, position, and relationship with or role for the patient (including legal surrogate identification). Introductions are particularly important in teaching hospitals where it is hard to distinguish between medical students, physician assistants, nurse practitioners, residents, fellows, and attending clinicians. Knowing clinicians' roles correlates with family/caregiver satisfaction [20].

After making sure that all the relevant family members are at the meeting, we state the goals of the meeting (see 'Premeeting' above) and negotiate a shared agenda. For example, "I want to spend some time talking with all of you about how your dad is doing. I also wanted to make sure that you all understand what we are doing for him and what we will be watching for over the next couple of days. Are there any other things that you want to discuss?"

Diagnostic information — We ask family members what they already know prior to explaining the patient's condition. Understanding the family's level of knowledge, emotional state, and degree of education allows for more efficient discussions and has been shown to provide important insights including perceived prognosis and causality [59]. Sample questions that can be used to start a conversation include the following:

●"What have the other clinicians told you is going on with your father?"

●"What do you think is going on with your mother?"

●"Have you looked on the internet to try to understand your loved one's illness? What have you found?"

If there are gaps in their understanding of the current medical information, we offer to share our view as simply as possible. The goal is to describe what is medically wrong and what this means for the patient's life in nontechnical language, preferably in two to three sentences. This information reduces uncertainty about what is happening or is likely to happen, improves the quality of shared decision-making, and strengthens the relationship among all participants [60].

Explaining physical manifestations of severe disease and providing written leaflets, pictures, radiographs, and videos can often help convey information and increase understanding [61-63]. Technical details, such as urine output, ventilator settings, and vasopressors, may lead to confusion and detract from the bigger picture.

Therapeutic information — The following is our typical approach:

●We describe the current therapies as simply as possible. We provide more detail when requested by the family/caregiver, which may reinforce the seriousness of the situation, when families/caregivers need reassurance that all reasonable interventions are being performed or when the prognosis is so poor that the discussion should focus on end-of-life.

●After discussing the patient's values (see 'Goals of care: ICU-specific issues' below), we mention common complications and discuss treatments that make the patient comfortable as well as what tradeoffs may exist between interventions that improve comfort and interventions that improve prognosis.

●We provide information that helps them decide if these treatments meet the patient's goals rather than asking them to choose specific treatments [64].

●We also explain how success or failure will be measured and in what time frame this might occur. As an example, "We expect that his blood pressure will improve in the next 24 to 48 hours. If not, that might mean that this infection might not be treatable. Let's meet again tomorrow for an update." This is referred to as a "time-limited trial" and the various measures that are examined are termed "clinical milestones" [2,65,66]. Data suggest that the use of time-limited trials, improves the quality of meetings as well as shortens ICU length of stay (LOS) with no impact on mortality [67-69].

Prognosis — An important part of getting on the same page about the medical situation is developing a shared understanding of prognosis. This information can help families think through the burdens and benefits of ongoing intensive care. Communication of prognosis in palliative care and advanced cancer are discussed separately. (See "Communication of prognosis in palliative care" and "Survival estimates in advanced terminal cancer", section on 'Communication of survival estimates and prognostic awareness'.)

●Deciding how much prognostic information to give – Despite its importance, prognosis for survival, not to mention functional prognosis, is not discussed in more than one-third of ICU family/caregiver conferences [70]. This may be because prognosis is especially difficult in the ICU because of uncertainty and the rapidity with which the clinical situation can change. In addition, many clinicians worry that it will decrease surrogates' hopefulness [71,72]. However, while responses vary [73], most family/caregivers do not feel that prognostic information affects their ability to maintain hope [74] and feel that clinicians should not protect them from the truth [61,74]. This allows families/caregivers to support the patient and prepare emotionally and logistically for the possibility of the patient's death. Documentation of the prognosis in the chart may increase a clinician's likelihood of communicating the prognosis [75].

Occasionally, some families/caregivers do not want prognostic information. We ask how much information people want before giving it. For example, "I want to give you as much information as you want, but not overwhelm you. Some people want to hear about what I think may happen while others do not want this information. Which kind of person are you?" It is important to check in with different family/caregivers members if there is more than one person at the meeting ("Is this something everyone wants to hear?") as some may choose to leave the room [76,77].

●Numeric versus general estimates – How best to convey prognosis is a matter of debate. While many family/caregivers prefer numeric estimates to convey prognosis, clinicians differ in this regard and may prefer qualitative risk (eg, high or low risk of death) [61].

How numeric estimates are conveyed affects the perception of risk. Prognosis conveyed as a frequency (ie, 1 in 10 chance) is perceived as higher risk than when it is conveyed as a percentage (ie, 10 percent). Discussing chance of death rather than chance of survival also results in higher perceived risk [78].

Prognostication in the ICU is challenging. However, limited data suggest that physicians most accurately predicted six-month mortality (likelihood ratio [LR] 5.91) while nurses most accurately predicted in-hospital mortality (LR 4.71) [79]. (See "Predictive scoring systems in the intensive care unit", section on 'Acute Physiologic and Chronic Health Evaluation (APACHE)'.)

If asked to share a chance of survival, we typically start with a qualitative estimate (eg, "I worry she is unlikely to survive") and leave space for the emotion that comes with hearing this. If a numeric estimate is desired, we will provide that (eg, "Out of a group of 100 people like your father, I would expect that 90 would die and 10 would survive").

●Discussing functional outcomes – While many discussions focus on chance of death, we also discuss the patient's likely functional outcome if they do survive (eg, likelihood of being nursing home-dependent). Functional outcomes may be equally or more important as families/caregivers and clinicians make decisions. We might say "I worry your mother will never be able to live independently again" [70,80,81]. In one study, requiring intensivists to record functional prognosis made them more likely to discuss withdrawal of life support [82]. In a randomized trial, discussing quality of life impacted the family/caregiver/surrogate symptoms of depression at one year [83].

●Discordant prognosis – Families/caregivers may be more optimistic about prognosis than clinicians (eg, up to 20 percent greater chance of survival) [84-86], which may lead to increased duration of life support prior to death [87].

The discordance may be due to misunderstanding by the family/caregiver [84] and less trust in the clinician [85,86], although most still found the prognostic information valuable for informing decisions. However, even when the quality of communication is rated highly, families/caregivers remain inaccurate in their expectations about prognosis [88], suggesting that family/caregivers interpret information through their own cultural and hopeful lens.

Our approach to discordance is understanding and openness [89]:

•We start by sharing in the hope and expressing empathy about the difficult situation.

•We try to understand how they are thinking about the situation to gain insight into the reason for their optimism. For example, they may be obtaining information from other sources (eg, friends, the internet) or may believe clinicians underestimate the patient's strength and life history (eg, "They're a fighter," "They've survived trauma before") [84,90,91].

•We explain that uncertainty exists and address it with the following:

-We may discuss best-case and worst-case scenarios (eg, using the phrase "hoping for the best and preparing for the worst") [92-94]. This approach emphasizes that the clinician understands the hope for survival in the context that it may not happen. Limited evidence supports this approach. In a study of 141 patients with advanced cancer who received both optimistic and pessimistic statements regarding prognosis, only pessimistic statements were associated with an increased likelihood that patients would agree with their oncologist's estimated chance of cure [95]. Whether this applies to critically ill patients is unclear.

-We also ask if they have considered what might be done if the patient does not improve. This conversation may also lead to a discussion of when it is appropriate to change the treatment to less aggressive or palliative care. If the family cannot imagine their loved one getting worse, information is unlikely to help and emotionally supporting the family to build a relationship is critical.

-Some clinicians use language such as "I hope" and "I worry" [96]. For example, we might say "Your father is very sick. We are doing everything we can to help him recover from the infection. While we hope he is going to recover, we worry that he might not."

•Sometimes showing medical imaging conveys the severity of a situation better than words.

•If there is clinical uncertainty, we provide an estimate of when more will be known about the prognosis. For example, "The next 48 hours are going to be important regarding how your mother does. The kinds of things we are looking for are whether her blood pressure gets better, how her kidneys are doing, and whether she wakes up" or "Let's wait for the next brain scan and electroencephalography result to help us decide what the outlook is likely to be."

•We try to prepare families/caregivers that rapid changes in a patient's status are common in the ICU and it can be hard for families to comprehend (eg, "But he was doing so well just this morning"). As an example, we might say, "When people are really sick and unstable, like your parent, things may change very rapidly. We will let you know if there is an important change in their status that affects the prognosis."

If family/caregiver expectations remain more hopeful than what we believe is likely to occur, we might express sorrow that their hopes are unlikely to be fulfilled. We may use wish statements like "I wish I could tell you that your parent is going to pull through". Continuing to push is unlikely to be productive, so we focus on relationship-building and give the family/caregivers time to understand and grieve the loss.

If a shared understanding of a poor prognosis can be achieved, it may lead to finding new goals of care and changes in care approaches. This might mean no further interventions, a do-not-resuscitate or -intubate order, maintaining intensive care until all family/caregivers can get into town, or dying in a dignified peaceful manner.

Tools to try to address discordance in prognosis understanding have been described, but may not impact outcomes. As an example, in a randomized trial of 277 critically ill patients, a web-based program utilized by both the clinician and surrogate had no impact on prognostic concordance between the surrogate and clinician nor did it change decisions about goals of care or reduce surrogate psychological distress, decisional conflict, patient LOS, or mortality [97].

Managing family/caregiver emotions — We observe and give space for emotional responses. We reassure families/caregivers that such responses are normal and vary. Some responses include the fight-or-flight response (leading some family/caregivers to need to get up and walk around) and the parasympathetic response (leading some family/caregivers to become quiet, numb, and withdrawn), as well as sadness, anger, grief, guilt, fear, and anxiety [98].

As a response to family/caregiver emotions, we avoid using scientific language or providing false reassurance to detract from the heightened emotions in the room. We use one of two mnemonics to help manage high emotions [99]:

●NURSE stands for naming (N), understanding (U), respecting (R), supporting (S), and exploring (E), examples of which are shown in the table (table 2).

●VALUE stands for valuing and appreciating what surrogates communicate (V), acknowledging their emotions with reflective summary statements (A), listening carefully (L), understanding who the patient is as a person by asking open-ended questions (U), and eliciting questions (E) [100,101]. Outcomes associated with VALUE are discussed below. (See 'Outcomes' below.)

Attending to emotions not only helps patients calm and re-engage with cognitive information, it also serves as a point of connection and helps the clinician understand important concerns that may impact the medical plan [102]. The use of more empathic statements has been associated with higher family/caregiver satisfaction with communication [103]. Data also suggest that addressing emotions reduces patient anxiety, elicits clinically important information, improves the clinician-patient relationships, and promotes satisfaction with the meeting [103-107]. (See 'Adequate family/caregiver satisfaction' above.)

However, healthcare personnel often miss opportunities to address family/caregiver emotions [108]. In one study, clinicians did not make any empathic statements in one-third of family/caregiver meetings [103], especially when families/caregivers had limited English proficiency [109].

Goals of care: ICU-specific issues — Goals of care discussions are best performed before ICU admission. Pre-ICU goals of care discussion details are provided separately. (See "Responding to requests for potentially inappropriate or futile therapies in adult intensive care unit", section on 'Initial evaluation to establish goals of care' and "Discussing goals of care" and "Discussing serious news".)

Once in the ICU, ongoing goals of care discussions are required. With a shared understanding of the diagnostic, therapeutic, and prognostic information, and when emotions have calmed, we work with families in the ICU to make shared decisions about next steps that align with patient goals and values. The following is our general approach, particularly when ICU treatments are unlikely to achieve the patient's goals:

●Timing – We and many experts believe that, when appropriate, the possibility of death should be mentioned early in the ICU stay [61]. Conversations about end of life tend to be less jarring for family/caregivers when they occur during a meeting as part of the natural progression of dialogue about the illness.

Family/caregivers of patients who die in the ICU report a higher quality experience surrounding death and dying when the patient's wish to withdraw life support was discussed during a meeting [110].

However, data suggest that goals of care conversations are often deferred until the team is considering a transition to comfort care [111,112]. Additionally, limited data suggest that <10 percent of decisions made in the ICU meet all of the criteria for shared decision-making [113-115]. Data also suggest that clinicians do not spend much time talking about the patient as a person and their inquiries into the patient's goals and values are superficial [18,116].

●The discussion – We find a structured approach to be helpful when discussing goals of care late in the course of an illness. The approach we use is called REMAP, which stands for [117,118]:

•Reframe why the status quo is no longer working

•Expect emotion and respond empathically

•Map out patient values

•Align with those values

•Propose a plan that matches those values

This approach is discussed in detail elsewhere (see "Discussing goals of care"). Special considerations for REMAP discussions in the ICU include the following:

•We ask about the patient's premorbid quality of life. We discuss the prognosis, the likelihood of returning the patient to an acceptable post-ICU quality of life, and the burdens that may result from ICU and post-ICU interventions [119-121]. (See 'Prognosis' above.)

•We emphasize that family/caregivers be guided by the patient's goals and values and not what they themselves would want. For example, we avoid asking "What do you think we should do next?" Instead, we might say, "If your father could hear what we have said, what would he say?" or "Knowing your mother the way you do, what do you think her opinion would be?". Evidence suggests that wording the questions this way results in the family/caregiver being better able to predict what the patient would say and inform the clinician about the patient's values [122].

•We also ask whether specific conversations have taken place with the patient about their wishes, which can be helpful for shared decision-making regarding end-of-life care. High-quality communication with the ICU clinician has been shown to increase surrogates' confidence in their role as decision-makers and can shorten the duration of life support among patients who die [123]. Another study reported moderate to strong decisional regret in approximately 20 percent of family/caregivers, especially for decisions surrounding life support [124].

•We ask whether an advance directive was in place and, if available, review it. Data in critically ill patients report that advance care planning is associated with decreased ICU admissions, reduced ICU LOS, and lower levels of decisional conflict [125,126]. Advance care planning is discussed separately. (See "Advance care planning and advance directives".)

•We pay attention to family dynamics and try to ensure that all perspectives are heard. When possible, we try not to rush decisions and give the family time to talk among themselves since they may not wish to disagree in front of a stranger. It might be helpful to say, "I want you to be able to look back on this six months from now and know you did all the right things for your mother."

•We also ask about spiritual or religious concerns regarding end-of-life care (eg, "Are there any spiritual, religious, or cultural issues that we should know about?"). However, even among highly religious families, one study found that spiritual or religious issues were discussed in <20 percent of ICU goals of care meetings [127].

•We make explicit statements that the patient will not be abandoned before death, that they will be comfortable and will not suffer, and that the clinician will support the family whether the decision is to withdraw or not withdraw life support [128]. Ethical issues pertaining to withholding or withdrawing ventilation are provided separately. (See "Withholding and withdrawing ventilatory support in adults in the intensive care unit".)

●Providing recommendations – Offering a recommendation is a key component of the goals-of-care conversation and can be particularly valuable late in the course of an illness when the patient is responding well to medical therapy. For example, when family/caregivers struggle to balance wanting to follow their loved one's wishes and not wanting to feel responsible for their death (eg, "My father would never have wanted to be like this, but I can't tell you to stop."), we try to remove the burden of this "life or death" decision from the family/caregiver by asking "Would it be helpful if I gave you my recommendation?". We then present a recommendation based upon a synthesis of the medical facts that is congruent with the patient's values [129-131].

Other examples might be to say "I would never ask you to make the decision to stop. That is a horrible thing to ask of anyone. What I needed you to do was to tell me what your parent would have said so that I could tell you the best way to respect their goals and values. And you have done that. Given these values, I think we should focus our goals on keeping your father comfortable." At this point, keeping the patient comfortable can be described and the option of not escalating care can be introduced (eg, "If he gets sicker, I do not think we should put him on machines to prolong his dying process").

However, it is unclear if families and caregivers prefer such recommendations. For example, families and caregivers with low trust in their clinicians may prefer more control over life-support decisions.

●Promoting trust and acknowledging discrimination – Conflicts between families/caregivers and ICU healthcare personnel are common (one-third to one-half of cases) especially when discussing end-of-life care [15,132]. Conflicts often lead to distrust, which may be particularly high in the ICU because patients have no long-term relationship with ICU healthcare personnel [133]. In turn, families/caregivers may feel isolated, misunderstood, abandoned, and pressured to give up or doubt the healthcare team's commitment to the patient's well-being. Additionally, family/caregiver experiences of discrimination are common [134] and may add to distrust. Our approach to promoting trust and acknowledging discrimination is one of cultural humility [135]:

•We ask about the family's previous experiences with the healthcare system.

•We acknowledge discriminatory experiences when they are noted.

•We explicitly express our desire to be trustworthy and want to know if the family has had poor experiences.

•We attempt to understand the reason for the conflict. There are three main reasons conflict may occur:

-Lack of effective communication – Clinicians tend to underestimate the information needs of patients, surrogates, and families/caregivers and frequently lack the skills to communicate complex medical information simply [136], leading to anxiety and confusion among family/caregivers [16,20].

-Lack of emotional support – Inadequate emotional support may also contribute to conflict. As an example, one study reported that surrogates suffer from a negative emotional burden, including stress, guilt, and doubt about the decisions that were made [137].

-Value conflicts – Some conflicts arise due to genuine value conflicts about the appropriate plan of treatment among clinical team members, among family members, or between the family and the clinical team [138,139].

•Should conflict persist between the clinician and patient/caregivers, the seven-step resolution process regarding requests for potentially inappropriate treatments may be useful. (See "Responding to requests for potentially inappropriate or futile therapies in adult intensive care unit", section on 'Conflict resolution: Seven step process'.)

Wrap up — At the end of meetings, we summarize the major issues discussed and decisions made. A written summary may be helpful. Alternatively, we may ask the family/caregiver to summarize the meeting, to assess their understanding.

We discuss what will happen next and give the family/caregiver time to ask any remaining questions.

We ensure that there is an adequate follow-up plan including the following:

●Appointing a spokesperson for less formal conversations who can then communicate with other family/caregivers (particularly for large families). Less formal meetings with one or two family members/caregivers can occur more frequently to ensure that they are kept informed about the patient's condition [140].

●A way for them to contact the healthcare personnel if questions or issues arise.

●A clear plan regarding when the next meeting will take place.

The plan can be a time or the criteria that will guide the occurrence of the next meeting. We also inform them if another provider may be replacing us as the primary clinician.

After leaving the room, we debrief as a team, especially if it was a particularly difficult meeting. This can be an opportunity for teaching and to address any moral distress felt by team members [141].

OUTCOMES — 

Limited data support benefit from good communication from a patient, family/caregiver, and healthcare provider standpoint.

●Patient-related outcomes – There is increasing evidence that family/caregiver meetings may improve length of stay (LOS) or shorten duration of mechanical ventilation, resulting in improved transition to comfort-focused care when aligned with patient values [65,142-145].

•One study compared outcomes before and after the institution of a strategy of early multidisciplinary meetings plus follow-up meetings with family/caregivers of patients whose goals were not being achieved with advanced supportive care [65]. LOS decreased following the intervention while mortality was unchanged. In contrast, another study of a similar intervention did not impact LOS [36]; however, the intervention did not address the communication skills of the clinicians running the meetings, which may explain the conflicting result.

•Observational studies have found that either ethics consultation or inclusion of a palliative care consultant in meetings was associated with shorter ICU LOS and unchanged mortality [40,143,145-147]. (See 'Participants' above.)

•A study of 79 liver transplant service patients in the surgical ICU found that integrating palliative care processes and interdisciplinary family/caregiver meetings increased goals-of-care discussions, do-not-resuscitate (DNR) orders, and withdrawal of life support [148]. DNR orders were placed earlier in the patient's course and ICU LOS decreased by three days while mortality remained unchanged.

•In a randomized trial of a nurse-led intervention that prepared families for meetings, the quality of communication and patient- and family-centeredness of care was perceived as better, ICU LOS was shorter (6.7 versus 7.4 days) and time to in-hospital death was shorter [149].

●Family/caregiver-related outcomes – Family/caregiver meetings may also improve psychological outcomes for family/caregivers, but data are conflicting and may depend upon the intervention used [83,100,149-161]. (See 'Minimize psychological distress' above.)

•Combination interventions:

-In one randomized trial of a communication strategy called VALUE (see 'Managing family/caregiver emotions' above) that included a bereavement brochure, family/caregivers in the intervention group had less depression, anxiety, and PTSD symptoms compared with usual care [100]. This benefit remained evident at the three-year follow-up [152].

-A cluster randomized trial in 34 ICUs examined a three-step support strategy for family/caregivers after a decision to withdraw or withhold life support (an end-of-life family conference, at least one ICU room visit during the dying process, and a meeting after the death) [153]. Compared with standard care, the intervention reduced the number of relatives with prolonged grief symptoms (21 versus 15 percent) and lowered the median prolonged grief score.

-Another randomized trial reported that an ultra-brief, six-module, manualized psychological intervention for family/caregivers with anxiety or an emotionally close relationship to the patient reduced stress, grief intensity, and depression [154].

-However, not all studies report a positive impact of multicomponent support interventions [160,161].

•Ancillary staff interventions

-A randomized study found that proactive participation of the nurse in physician-led family conferences was valued by family/caregiver and reduced their anxiety and depression [157].

-Several studies reported that input from spiritual advisors may increase family/caregiver satisfaction, improve decision-making, and reduce anxiety [155,159].

-In contrast, in another critical care nurse-led intervention that prepared families for meetings, the intervention did not affect depression or anxiety symptoms [149]. Similarly, in another trial of palliative care-led meetings for patients with chronic critical illness, anxiety/depressive symptoms were not affected by the intervention [156]. However, the palliative care physician or nurse practitioner usually met with the family/caregiver without other palliative care team members and without ICU clinicians. Symptom management was generally not provided and prognosis and goals of care were almost always discussed in the initial meeting without significant longitudinal follow-up.

Some of the benefits derived from family/caregiver meetings may be related to the opportunity that they provide for family/caregivers to express their feelings and concerns about the patient. This is important because family/caregivers are less likely to experience conflict if they feel that the care provided was respectful and focused on the physical and emotional needs of the patient and the family/caregiver. Meetings can help the family/caregiver come away with a positive sense of certainty regarding the decisions that they made [162].

●Clinician stress – Family/caregiver meetings may reduce clinician stress or burnout. Several international societies have identified that regular family/caregiver meetings to establish goals of care are important for mitigating burnout [163]. The rationale is that if there are open lines of communication and the team is confident that family/caregivers understand the medical situation and the team understands the rationale for the decided-upon care plan, then there is less moral distress, less conflict, and better coordination among all involved.

This aligns with data that suggest ICU clinician burnout is inversely related to family-centeredness of care [164].

International societies have also advocated communication skills training, which has been shown to decrease burnout [165] and improve relational coordination surrounding goals of care among ICU team members [166]. (See 'Educational tools' below.)

EDUCATIONAL TOOLS — 

The optimal method of conducting a family/caregiver meeting is uncertain [6,167]. However, training tools are becoming increasingly available to train clinicians to better communicate during meetings [168-172]. Educational resources, such as "Intensive Talk," a course designed to help faculty develop ICU communication skills training sessions at their home institutions, have been collected and organized on the IPAL-ICU website by the Center to Advance Palliative Care (CAPC). Models for training team members on how to hold a meeting exist [173] and have been shown to change clinician behavior with families/caregivers in the ICU [135]. (See "Discussing serious news", section on 'Can communication skills be taught and learned?'.)

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: Intensive care unit ethics".)

SUMMARY AND RECOMMENDATIONS

●Meeting goals – Family/caregiver meetings are integral to patient care in the intensive care unit (ICU). During meetings, we aim to communicate honest, intelligible, and timely information to family/caregivers; understand the patient's goals and values; and help provide guidance to ensure that the care provided aligns with what is important to the patient. We also seek to minimize caregiver distress by ensuring they are satisfied with the information provided and that they feel heard, understood, and supported (table 1). (See 'Family/caregiver meeting goals' above.)

●Preparation – We schedule an initial family/caregiver meeting within the first two to five days after ICU admission and invite participants relevant to the patient from both a personal (eg, relatives, partners, friends, spiritual counselors) and healthcare perspective (eg, primary care physician, oncologist, pulmonologist, nursing, social workers, palliative care staff). We prepare a quiet place to talk. In advance of a meeting, we hold a premeeting with all involved clinicians to ensure a consistent report about the patient's condition and agree upon an agenda with clear healthcare staff roles for the meeting. (See 'Preparatory steps' above.)

●Meeting procedure – As a general principle, we want all participants to engage in the meeting. (See 'Meeting procedure' above and 'General principles' above.)

•We start with introductions and state the meeting goals. Using basic nontechnical language, we assess the level of understanding about the patient's condition, the therapeutic strategy and its efficacy, and the expected prognosis. (See 'Sharing clinical information' above.)

•We observe and give space for emotional responses (table 2). We reassure families/caregivers that such responses are normal and vary. Acknowledging emotions serves as a point of connection, helps us understand important concerns that may impact the medical plan, and helps patients and families calm and reengage with information. (See 'Managing family/caregiver emotions' above.)

•We work with families in the ICU to understand values in the context of the clinical situation and then offer recommendations for a plan that aligns with those values. (See 'Goals of care: ICU-specific issues' above.)

•At the end of the meeting, we summarize the major issues discussed and decisions made and ensure that an adequate follow-up plan is in place. (See 'Wrap up' above.)

●Outcomes – Family/caregiver meetings may shorten length of stay and the duration of mechanical ventilation and improve transition to comfort-focused care (when aligned with patient values). Meetings may also improve psychological outcomes for family/caregivers and mitigate clinician burnout. (See 'Outcomes' above.)