The End-of-Life Family Meeting in Intensive Care Part I: Indications,Outcomes,and Family Needs

Abstract

This is a three-part article that reviews the literature on end-of-life family meetings in intensive care, focused on situations when the patient cannot participate. Family meetings in end-of-life care, especially when conducted prophylactically or proactively, have been shown to be effective procedures for improving family and staff satisfaction and even reducing resource utilization. The first part of the article outlines the family needs that should be addressed in such meetings, including clinician availability, consistent information sharing (especially of prognosis), empathic communication and support, facilitation of bereavement, and trust. The second part addresses family-centered, shared decision making and sources of conflict, as well as related communication and negotiation skills and how to end the meeting. Families and clinicians differ in 1) their understanding of the patient's condition and prognosis; 2) the emotional impact of the illness, particularly the personal meaning of pursuing recovery or limiting supports; and 3) their views of how to make decisions about life-prolonging treatments. The final part draws on the previous two sections to present a structured format and guide for communication skills in conflictual meetings. Ten steps for a humane and effective meeting are suggested, illustrated with sample conversations.

Introduction

The family meeting in the intensive care unit (ICU) is a complex interdisciplinary procedure that can help achieve humane and effective care when patients and families face end-of-life decisions. Deeply anxious patients and families, thrown into a hospital setting that is often strange and frightening, must work with unfamiliar health care professionals, and may be faced emergently with terrible choices.¹ Difficult decisions about limiting life-sustaining treatment and challenging discussions call upon skilled communication competencies.

As many as 90% of ICU deaths are associated with decisions to withhold or withdraw life-prolonging treatment.² The end-of-life family conference is a basic palliative care procedure that commonly precedes such decisions. The importance of such meetings has been recognized in multiple consensus statements.^3–10 Leading family meetings is a key clinical skill in many settings, but few clinicians have received any formal training in the procedure or relevant palliative care skills,^11,12 and significant gaps in communication competencies have been identified.¹³

Purpose

This is the first of a three part article about interdisciplinary family meetings when they address end-of-life care in the ICU. All three parts focus on communication with the family in the common situation in which the patient is unable to participate in the discussion.¹⁴

The current part reviews goals, indications, and outcomes for the procedure, and summarizes family needs that can be addressed in such meetings. A second part focuses on end-of-life decision making in family conferences. A final part offers an evidence-based, tutorial-style, practical delineation of key skills, including a structure for family meetings and sample phrases that are useful in learning what to say.

Methods

This article is based on: 1) personal experiences teaching family meetings as a communication skill, leading family meetings in consultation with ICU teams, and participating in a Robert Wood Johnson-sponsored initiative to integrate palliative care and intensive care,¹⁵ and; 2) an extensive literature review, including a systematic review of relevant articles, beginning with searches on “family meeting” with “ICU” or “intensive care” or “palliative care” in English from 1994 through 2009, followed by exploring pertinent citations in these articles, leading to a bibliography of more than 700 relevant references.

Indications for Family Meetings

Common goals for a family meeting are listed in Table 1, whereas reasons for initiating such meetings are listed in Table 2.

Table 1.

Goals of a Family Meeting

Assess family understanding, concerns, and coping

Share information and provide education for the family

Provide emotional support to the family

Elicit patient's goals and values (through substituted judgment), and use these to establish goals of care

Build trust

Table 2.

Indications for a Family Meeting

Proactively triggered meetings

Prophylactic (routine) meetings (in the first 48–72 hours)

After a long length of stay

For specified serious illnesses or “chronic critical illness”^a

When other illness markers are recognized, particularly when major procedures or poor prognosis can be anticipated

Absence of designated health care agent

Reactive family meetings (initiated in response to problems)

Response to a family crisis

Prospect of withholding/withdrawing life-sustaining measures

Other major care decisions

Conflict (or concerns about conflict) over goals and method of care

Within family

Between family and staff

Discharge planning

Nelson, Cox, Hope et al. 2010.

Proactive versus reactive family meetings

Although information sharing and family support are important goals in family conferences, the primary trigger for scheduling the procedure is conflict among family and staff. A number of ICU studies, however, point to the value of routinely setting up family meetings when a patient enters the ICU or of proactively arranging meetings when specific triggers are noted, including the earliest signs of conflict.

Routine or prophylactic family meetings and proactively triggered meetings have been studied carefully and demonstrate well-proven outcomes (see Table 3). Two studies by Lilly of meetings conducted for all ICU patients within 48 hours of admission showed striking improvements in family satisfaction and resource utilization. A consensus statement, based on critical review of the literature, thus recommends:

Family meetings with the multiprofessional team begin within 24–48 hours after ICU admission and are repeated as dictated by the condition of the patient with input from all pertinent members of the multiprofessional team.¹⁶

Table 3.

Proactive Family Meetings in the ICU

Author	Patient population	Intervention model ¹¹⁰	Significant outcomes
Field et al. 1989¹¹¹	Multiple organ failure	Supportive care team consultation	Reduced ICU LOS Fewer therapeutic interventions
Dowdy et al. 1998¹¹²	Mechanically ventilated >96 hours	Ethics consultation	Reduced ICU LOS More decisions to forego life-sustaining treatment Better quality of communication for patients who died
Schneiderman et al. 2000¹¹³	Value-based treatment conflicts noted by 4 nurses	Ethics consultation	Reduced ICU LOS in nonsurvivors to discharge Reduced use of life-sustaining treatments in nonsurvivors (ventilation days, artificial nutrition/hydration) Increased family satisfaction Increased ICU staff satisfaction
Lilly et al. 2000¹¹⁴	Predicted ICU LOS >5 days or Predicted mortality >25% or Predicted irreversible change in functional status precluding return to home	Integrative model with ICU team	Reduced ICU LOS Reduced days of provider nonconsensus on goals of care Increased days of family consensus with clinical staff
Schneiderman et al 2003¹¹⁵	Value-related conflicts identified by staff	Ethics consultation	Reduced ICU LOS to discharge in nonsurvivors Reduced hospital LOS to discharge in nonsurvivors Reduced use life-sustaining treatments in nonsurvivorsReduced days on ventilator in nonsurvivors Improved staff satisfaction
Lilly et al. 2003²⁰	Predicted length of ICU stay ≥5 days Predicted >25% mortality or Change in functional status that was potentially irreversible and sufficient to preclude eventual return to home	Integrative model with ICU team	Reduced ICU LOS Reduced ICU mortality
Campbell and Guzman 2003¹¹⁶	Global cerebral ischemia after cardiopulmonary resuscitation or Multiple organ system failure	Palliative care consultation	Reduced ICU LOS after comfort care decision Reduced hospital LOS Reduced nonbeneficial resource use Reduced cost of care Reduced time to comfort care goals
Campbell and Guzman 2004¹¹⁷	Dementia	Palliative care consultation	Reduced ICU LOS Reduced hospital LOS Reduced resource utilization after DNR Increased DNAR rates Increased goals of comfort measure only
Norton et al. 2007¹¹⁸	5 high-risk categories	Palliative care consultation	Reduced ICU LOS
Lautrette et al. 2007²²	Physician believed patient would die in a few days	Palliative care consultation	Reduced nonbeneficial interventions Increased withdrawal of mechanical ventilation and vasopressors More agreement with relatives after initial disagreement Longer conferences; family spent more time talking Lower rates of PTSD, depression, and anxiety at 90 days Increased family satisfaction with information; less guilt, more ability to express emotions to team, more psychoactive drugs
Mosenthal et al. 2008²¹	Trauma ICU	Palliative care consultation	Reduced ICU LOS in patients who died Increased discussion goals of care Earlier institution of DNAR and orders for withdrawal of life supports
Daly et al. 2005¹¹⁹	5 ICUs at two academic medical centers	Integrative model with ICU teams	No change in LOS or aggressiveness of care or treatment limitation decisions

Nelson, Bassett, Boss et al. 2010.

Schaefer and Block 2009.

ICU, intensive care unit; LOS, length of stay; PTSD, posttraumatic stress disorder.

This strictly followed routine may seem impractical, especially for ICU admissions of previously healthy persons experiencing an acute, readily reversible event. Other studies rely on such logical triggers as longer length of stay,¹⁷ lack of a designated proxy, the earliest recognition by staff of conflict, or situations that might predict the need for end-of-life decisions (e.g., patients with poor prior functional status; patients judged as likely to die or lose major functions or to have a difficult or prolonged course in the ICU).^17–19

According to Lilly:

There are four primary objectives of the initial session: 1) to review the medical facts and options for treatment; 2) to discuss the patient's perspectives on death and dying, chronic dependency, loss of function, and the acceptability of the risks and discomforts of critical care; 3) to agree on a care plan; and, most important, 4) to agree on criteria by which the success or failure of this care plan would be judged. The final objective was essential and was accomplished by defining clinical events (termed clinical milestones) that indicate that the care plan had been effective, such as resolution of hypotension or reduced need for ventilator support, with the time frame for their occurrence.²⁰

Studying Family Meeings

Outcome studies

The family meeting in the intensive care unit—as conducted by intensivists themselves or as a key part of consultations by ethicists or palliative care specialists—is the best-studied and best-proven end-of-life care intervention in critical care, and has been shown to be particularly effective in improving family satisfaction and reducing resource utilization (e.g., days in the ICU for patients who die). A recent quality improvement initiative of routinely scheduled meetings, however, did not show desirable outcomes, perhaps due to the lack of specialized palliative care clinician involvement. (See Table 3.)

Process studies

What are the processes that make for a successful family meeting about end-of-life care in the ICU? What are the key competencies for skillfully conducting such a meeting? The interventions in the studies cited in Table 3 are too broad to make any generalizations about specific methods, although they provide some useful guidance.^20–22 Two central issues in these family meetings, breaking bad news and the DNAR discussion, have been the subject of an extensive literature that can guide clinicians.²³ We can also turn for recommendations to a huge and diverse evidence base, as well as troves of instructional guides and educational modules, on the doctor-patient relationship, palliative care, death and dying, and clinical communication skills.²⁴ A recent review of directly observed patient-physician encounters in palliative and end-of-life care cited 4 common themes:²⁵

1. Physicians focus on the medical and technical aspects of care, while avoiding the emotional and quality-of-life issues.

2. Sensitive topics are perceived by physicians to require long discussions (although the actual time of meeting lasts no longer when these issues are addressed).

3. Physicians dominate the discussion (both in terms of taking up the most “air time” and in how they direct which topics are addressed).

4. Patient/family satisfaction is associated with supportive physician behaviors, including allowing the family to participate actively.

The next section summarizes family needs in the end-of-life meeting in the ICU, including the importance of communication skills.²⁶

Addressing Family Needs

When families of patients who died in the ICU are surveyed, most report satisfaction with the care they received and with how comfort was addressed when life supports were withdrawn.^27,28 At the same time, overall dissatisfaction is notoriously difficult to elicit in surveys of clinical care, and numerous other studies and consensus statements indicate unaddressed family needs when a loved one dies, either in the ICU or during the associated hospitalization.^{3,8,27,29–41} Recognition of the breadth of family needs by nurses has been disappointing⁴²; physician recognition of such needs has not been studied but presumably is no better.

Many family needs, of course, are improved through measures not specifically addressed in family meetings: staff training,⁴³ including attention to ethical issues;¹⁶ strong teamwork;^44–47 palliative care quality improvement^4,5 and benchmarking;⁴⁸ and a host of routine ICU policies and practices^49,50 such as open or liberal visiting hours;⁴⁹ a family information booklet;⁵¹ consistency and reliability of personnel and assignment of a primary nurse and physician to update the family regularly and provide support;⁵² ready availability and consistent use of social workers, clergy, ethicists, palliative care specialists, and interpreters; palliative care quality measures;⁵³ and appropriate facilities for family waiting and conferencing.⁵⁴ High rates of anxiety, depression, and posttraumatic stress disorder among relatives of ICU patients argue for expert psychosocial support and bereavement programs for families during the patient stay and afterward.^55–59

The following family needs should guide the family conference.^41,60

Assuring that the patient is receiving high-quality care

The family needs to feel secure that the patient is receiving the best possible care. Family members are likely to assess quality with a limited perspective on technical clinical issues, but rather with great sensitivity to what appears as caring, kindness, and respect for the patient and themselves. Overall satisfaction with end-of-life care is significantly associated with the respect and compassion shown to patient and family member.³⁹ Families want to know that the staff care about the patient as a person.

Provision of comfort ranks highly as a concern about quality. Good end-of-life care may include pledging to the family that “everything is being done” to save life, but also giving assurance that the patient will not suffer needlessly or have life prolonged when it can no longer be enjoyable or meaningful. Ideally, clinicians and family can join around the broad goal that “everything reasonable is being done” within the limitations of modern medicine.

Receiving appropriate information

Lack of information is an extremely common complaint of families in the ICU.^61–64 Information-sharing needs to be timely, readily available to the family, straightforward, free of jargon, and provided by clinicians when they are not rushed or impatient. A prompt family meeting is particularly useful when the patient's condition changes significantly.

End-of-life care is rife with cross-cultural and religious differences about who should be informed, the value of truth-telling or prognostication, and how decisions should be made.^65,66 These issues pose significant barriers to good care.⁴³ Use of trained interpreters is essential, but clinicians should recognize that inaccuracies in translation are common.^67,68

Regardless of cultural issues, some family members want to avoid the truth and will collude with the clinician to avoid discussing upsetting information,⁶⁹ although the great majority prefer honesty. Provision of information about end-of-life care, including prognostic information, seems to promote the family's peace of mind and trust.⁷⁰ Families are more satisfied after longer family meetings and when they sense they are being given complete information.^22,39

In ICUs, the family often does not know what information to focus upon, and may receive different impressions from different staff members. Early in the morning, the intern reports happily that the propofol infusion was reduced from 100 to 90 mcg/hour, whereas the day-shift nurse notes that the situation is very grave; on afternoon rounds, the attending seems guarded and somber, whereas the evening nurse cheerfully reports over the telephone that the patient is sleeping well. With so many well-meaning sources of information, family members may be confused or latch on to the version of the story that best suits them.

Good teamwork is a marker of quality of care in the ICU,^{44,45,47,71,72} and close collaboration is a means for assuring clear and consistent information transmittal for the family. The family meeting offers an opportunity for the health care team to assess family knowledge, provide a consistent picture to the family, and plan for ongoing communications.

Time to share perspectives and concerns

The clinician's thorough understanding of the clinical situation and eagerness to share information with the family is to be admired, but the tendency to lecture with overly technical and impersonal information is a common hazard observed in family meetings.^25,26 The more the physician talks and guides the conversation, the less chance family members will speak freely about their own questions and concerns. Lecturing interferes with the clinician's ability to listen actively, assess what the family understands about the clinical situation and how members are coping, gauge the quantity and quality of information the family desires, and provide empathic responses. Family members are more satisfied with meetings in the ICU when they have spent more time talking and the physician talked less.^22,73

Accurate information about prognosis

Prognostication in intensive care is often challenging. Clinicians' expert opinion or decision aids are not very accurate, especially in the first days of ICU admission.^74,75 Predictions for quality of life are even worse than those for survival.⁷⁶ Moreover, considerable variation in prognostication exists among physicians, so staff and family members may be dealing with contradictory information.⁷⁷ Nonetheless, it would be foolish to deny that physicians, perhaps with the aid of algorithms,⁷⁸ can make reasonable predictions of survival on the majority of patients upon ICU admission⁷⁹ or at least strongly suspect an outcome of death or severe disability, especially after a prolonged ICU stay and mechanical ventilation.⁸⁰ When goals of care are clear, physicians should often be able to identify physiological futility,¹⁶ harmful or nonbeneficial treatment, or inability to meet patient-defined minimum quality of life. This knowledge, whether conveyed in an honest and encouraging report of confidence about survival, an expression of uncertainty about prognosis, a warning about a significant likelihood of dying or severe disability, or a frank report of hopelessness, is an extremely important element of good information sharing.

Prognostication includes information about the likelihood of dying but also about functional outcome. The eventual need for nursing home placement or prolonged rehabilitation may greatly influence judgments about the advisability of continuing life supports. The anticipated length and intensity of care may also be relevant.⁸¹ Studies of DNAR discussions clearly show the influence that such prognostic information has on the choices patients make.^82,83

Surrogate decision makers report wanting honest prognostication and find it helpful in both coping and decision making.^84–86 Poor prognostic information from pediatricians seemed to foster inappropriate parent optimism.⁸⁷ Although disclosure of prognostic information may initially increase patient anxiety, it does not seem to impair hopefulness in the parents of dying children, and promotes longer-term adaptation, including caregiver bereavement, and typically leads to less aggressive care at the end of life.^88,89

In more than one third of audiotaped family conferences about the withdrawal or withholding of life supports in the ICU, physicians did not discuss the patient's prognosis for survival.⁹⁰ In another study, even when patients underwent prolonged ICU stays, they or their surrogate reported having a discussion with their physicians about prognosis in less than 40% of instances.⁹¹ Family conferences can be a major source of information about serious prognoses and can avoid major misunderstandings between staff and family.

In conducting meetings, clinicians should be aware that many surrogates recognize that physicians are quite fallible in predicting outcomes.⁹² Surrogates are often skeptical or frankly disbelieve physicians' assessments that treatment is futile.⁹³ They may have experienced inaccurate physician prognostication or believe that only God will determine the patient's course.

Discordance among staff about prognosis, particularly physician-nurse discordance, is common, especially in longer-stay patients.⁷⁶ Subjecting families to dissonant viewpoints can only be distressing to them, so reasonable concordance should be acheived prior to a family conference. Surrogates report more acceptance of clinician prognostication when they hear it from multiple sources.⁸⁵

An extensive literature on breaking bad news and on communication near the end of life provides guidance on the clinical task of giving a coherent, consistent message about the patient's condition, conveying prognostic information, and the many skills necessary for leading family meetings in the ICU.^{32,85,92–99} The process of sharing unwelcome prognostic information is deeply laden with psychological concerns for family and staff.¹⁰⁰ Steering between brutal frankness and unrealistic hopefulness can be a delicate task for the physician who is always seeking to be kind and truthful but is fearful that the family may “shoot the messenger.” Honesty may seem cruel and lead to antipathy or rejection by the family, yet the common euphemisms, vague innuendos, and ambiguities found in much “death talk” can foster confusion and promote inappropriate optimism or pessimism. If the patient is going to die, the clinician must make sure this message is conveyed clearly, which means using the words, “death” or “dying” or at least “not survive.”¹⁰¹

Empathic communication and support

ICU teams provide remarkably complex care to severely ill patients, some of whom surely would have died only a decade ago. Essential attention to the complexity of care for the patient can mean less attention to the family and its members' needs. Key opportunities for empathic connection in family conferences commonly occur when a family member expresses an emotion. Empathic communication occurs, for instance, when a clinician simply acknowledges the difficulty for the family when a loved one is critically ill or in noting the challenges of surrogate decision making and confronting death.^{25,26,102,103}

Audiotaped recordings of end-of-life family meetings indicate many missed opportunities to provide empathic communication, especially in listening and in responding to the family by acknowledging and addressing emotions.¹⁰⁴ In a multicenter study, one third of such meetings lacked any empathic statements, and the average number of empathic statements per meeting was 1.6. (It should be noted that empathy is also conveyed by nonverbal means and may be evident from the clinician's facial expression, tone of voice, etc.) As in similar studies in other clinical settings, family satisfaction correlates with more empathic statements.⁹⁹

Trust

A more basic family need—one that is harder to articulate or measure but that is painfully evident when it is absent—is trust in the health care providers, who typically are strangers. Clinicians are granted trust by the great majority of family members. In skillful family meetings, clinicians demonstrate that they deserve confidence by a caring, respectful, reliable, self-assured manner and excellent clinical and communication skills. Absence of trust is a marker for conflict and difficulty arriving at mutually agreeable decisions, and is familiar to all clinicians who have found themselves at loggerheads with a family. Trust is not a well-studied phenomenon in health care but can be fostered through many of the desirable behaviors discussed in this series of articles. Consistency in clinical personnel may foster the development of comfortable, trusting relationships.

Anticipatory grief and bereavement

The family meeting can provides an opportunity for the family members to talk about their fears of death, how they are coping with it, how they imagine life will be without a loved one, their associated financial concerns,¹⁰⁵ and so on. Few clinicians have been trained in addressing these tasks: “All the doctors just suddenly go.”¹⁰⁶ Unfortunate bereavement outcomes (depression and complicated grief) occur less often when families are well prepared for a death,⁵⁵ although a sense of being ready in the hospital does not assure feeling prepared during bereavement.¹⁰⁷

Ideally, the clinical staff members directly involved with the patient address bereavement, but this task may be delegated to social workers, clergy, specialized bereavement counselors, or palliative care clinicians who can be invited to family meetings. Likewise, part of the clinician's goodbye should be assuring availability after death.¹⁰⁸

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