1. 
   

   When should the ICU clinicians meet with the family of a critically ill patient and how should these meetings be conducted?

   
   
2. 
   

   Who should be included in an ICU family meeting?

   
   
3. 
   

   What are the elements of shared decision making?

   
   
4. 
   

   How should ICU clinicians discuss prognosis with ICU patients and their families, and specifically, how should the clinicians break the bad news?

In the United States, approximately 20% of all deaths occur in the intensive care unit (ICU) each year. Critically ill patients frequently lack decisional capacity and the ability to express their preferences for treatment, and thus decisions regarding goals of care often involve family members. In these circumstances the concept of surrogate decision making is enacted, which generally involves a person, often a family member, who knows the values and preferences of the incapacitated patient and who is willing to serve as a surrogate decision maker. However, prior studies have reported poor communication and conflicting goals of care between ICU clinicians and patients’ families. Communicating effectively and compassionately with families will help improve medical decision making for the patient and improve family outcomes after the critical illness of a loved one. The ICU family conference is a central component of this communication. This chapter provides a framework of how to plan, structure, and lead an effective meeting with families of critically ill patients.

Medical Decision Making

Relatives, partners, and friends often provide support and care for a patient, which for some will include the responsibility of surrogate decision making. Surrogate decision makers bear an enormous amount of emotional stress, and decision making during these circumstances can be difficult. In addition, one study revealed that despite discussions with ICU physicians, only half of families of critically ill patients adequately understood their relatives’ diagnoses, prognoses, or treatments. Despite this, clinicians and health systems often neglect the care of the family as part of the overall care of a patient.

The American Medical Association endorses an interdependence of families and physicians, and their partnership must be established in order to make good medical decisions and provide optimal care for the patient. High quality ICU care depends on effective clinician-family communication to improve the family members’ level of understanding and their ability to provide surrogate decision making that accurately reflects the wishes of the patient.

Family Outcomes: Anxiety, Depression, Posttraumatic Stress Disorder

Up to 25% of families report dissatisfaction with their communication with ICU caregivers. Furthermore, the approach to communication may cause anxiety, depression, and posttraumatic stress disorder among family members. Many physicians who work in critical care units conduct family meetings only after ICU patients are actively dying. However, critical care teams should meet with all families of ICU patients early during the ICU stay. In fact, family members of patients who survive the ICU also have a high burden of anxiety and depression and are more dissatisfied with communication in the ICU than family members of patients who die. Interventions have been developed and evaluated that can reduce the symptom burden of families in the ICU. One randomized trial demonstrated that a structured family meeting in conjunction with an informational brochure about the dying process results in a significant reduction in anxiety, depression, and posttraumatic stress reaction among family members.

Interdisciplinary Team Collaboration

While the methods of physician communication with families can have a significant impact on satisfaction, interdisciplinary communication also has a significant impact on important patient and family outcomes. Observational studies show increased survival, shorter ICU lengths of stay, and improved patient satisfaction when nurses and physicians communicate effectively. In addition, patients and families have reported that interdisciplinary communication plays an important role in end-of-life care, and existing studies demonstrate that most interventions that improve end-of-life care include an interdisciplinary team in the intervention.

In the initial steps in planning a family meeting clinicians should define who should be involved in the process. They must identify who the “family members” are for the patient and who among them should be involved in this process. To answer this question, the clinician must identify any assigned health care proxy or durable power of attorney for health care. If there has been no designation, or if the designation is unknown, then the legal next of kin should be located. Definitions of legal decision makers vary state by state and hospitalists should refer to local and state statutes or risk management departments to help determine legal next of kin. When approaching either the proxy or the legal next of kin to schedule a family meeting, the clinician should determine who that person believes is important to attend the meeting. Sometimes, others involved in the patient’s life can contribute information about who should be involved in decision making. When patients have large families, an effective meeting with all family members present may prove challenging. Nonetheless, all family members who desire to participate should be involved, and, in these circumstances it may be beneficial to seek the assistance of other, skilled members of the interdisciplinary team, such as a social worker, clinical psychologist, or ethicist.

The large interdisciplinary team-including consulting physicians, nurses, social workers, and spiritual care providers-that provides care for ICU patients frequently know the patient and family from different perspectives, and holding a meeting without attempting to have all relevant members present may result in miscommunication and missed opportunities to provide families with the best possible resources.

Holding an initial family meeting within 72 hours of ICU admission reduces the number of ICU days (by one day on average) and improves ratings of quality of dying by family members of ICU patients. Therefore, meeting with the family within 72 hours, and ideally within the initial 24 hours of admission can maintain high quality ICU care.

The location of the family meeting can augment the family experience. The chaotic ICU environment, with constant noise from alarms and frequent disruptions due to patient care interventions, can overwhelm families who may not retain the information or have difficulty discussing their concerns and emotions at the bedside. If no dedicated family conference room is available, the physician should find a private, quiet place away from the patient room, and large enough to accommodate the family and the members of the interdisciplinary team.

The approach to decision making about life-sustaining treatments in the ICU can vary from “patient autonomy”-or more commonly surrogate autonomy-on one end of the spectrum to “parentalism” on the other end of the spectrum. Although many patients desire autonomy, when it comes to decisions about life-sustaining therapy in the ICU, often the decisions fall to the surrogate. In the extreme, the autonomy model may make family members feel like they are being abandoned and may place unnecessary stress on the family. On the other hand, the extreme parentalism model takes all decisions away from the patient and family, limiting the input of their values and perspectives in decision making. The model of shared decision making encourages clinicians and patients or surrogates to communicate and exchange information and come to a decision jointly. In 2005, five European and North American critical care societies issued a joint statement supporting the model of shared decision making when caring for ICU patients.

Multiple components in the shared decision model are essential to have an adequate exchange of information and to make joint decisions with the family (Table 140-1). Although the shared decision making model is the preferred model, clinicians may need to adjust it based on unique patient and family situations. As circumstances and prognosis change, the role the family wishes to play may change. Therefore, the initial meeting should model shared decision making, beginning with the exchange of information regarding the status of the patient and the patient’s treatment preferences, followed by an assessment of the role the family wishes to play in the decision making process.