The Family Meetings

Lori L. Olson

Sumi K. Misra

Mohana B. Karlekar

Sara F. Martin

INTRODUCTION

The goal of excellent palliative care is to collaboratively meet the needs of the patients, families, and treatment teams during times of transition in the context of life-limiting and serious illness. Good communication between medical clinicians and families of seriously ill patients is recognized as a key factor in successful shared decision-making and family perception of quality care (1,2,3).

Formal family meetings have increasingly been seen as an effective tool to facilitate this dialogue (4,5). Not only do families improve their understanding of the patient’s diagnosis, therapeutic options, and prognosis, clinicians better recognize the emotional weight and the personal meaning of the patient’s illness. Through family meetings, clinicians and families build honest relationships based on each other’s desire to provide the best care for the patient (6). Family meetings should allow for families to identify patient’s goals and patient’s views of quality of life which allows clinicians to provide medical recommendations based on those identified goals. This process results in a shared decision plan (7).

This chapter is designed to:

Review recent literature relevant to optimal communication during family meetings.
Outline the anatomy of a family meeting, including setting, population targeted, planning, execution, pitfalls, and documentation of the event.
Highlight the family meeting as a tool for enhanced shared decision-making.

THE ROLE OF THE FAMILY MEETING

Communication occurs best, face to face. Given that over 50% of communication is non-verbal, it is a disadvantage to lose an opportunity for clarity and connection at a time of confusion, potential conflict, and impactful decision-making (8). While most patients and family members want to receive support and hope from clinicians, they also request honest information about the patient’s medical condition and prognosis (9,10). Yet, studies reveal that up to a third of families of critically ill patients are dissatisfied with the lack of communication or conflicting information from different clinicians (11,12).

Even when clinicians spend time communicating the patient’s medical diagnosis, treatment, and prognosis with the family, only half of families actually comprehend what was said despite both clinicians’ and families’ perception of understanding (13). This disconnect is alarming since clinical decisions are made based upon these misunderstandings.

Physicians rarely effectively communicate with their seriously ill patients about their goals, values, or basic treatment decisions. When physicians communicate effectively they are more apt to understand and address the issues that are important for the patient or the patient-family unit. Consequently, patients are better able to understand their medical situation in the context of their psychosocial situation. This could affect their understanding of their medical issues and treatment options more concretely (14). In addition, effective communication improves patient satisfaction and reduces anxiety and distress (15,16). Even brief expressions of empathy may reduce patient anxiety (17).

Optimal communication has been identified by patients and their families as one of the more important aspects of medical care at a time of serious illness and at the end of life (18,19,20). The family meeting is a useful format for clarification ensuring that everyone involved is on the same page regarding the patient’s condition.

WHEN SHOULD A FAMILY MEETING BE CONSIDERED?

A family meeting should be considered when multiple teams are involved in a patient with complicated care and decisions need to be made about further treatment. Family meetings provide an opportunity to clarify treatment goals, advocate for the patient, and ensure that all parties involved in care (both medical and nonmedical) understand treatment decisions and prognosis (21). Family meetings are an invaluable part of all levels of hospital-based care and are an important step in providing best care to patients and their loved ones. Meetings are recommended during transitions in care and critical decision-making points in a patient’s disease trajectory. For the cancer patient, a proactive meeting soon after the initial diagnosis may help the patient and family ask questions and begin to think about quality-of-life issues as they make treatment decisions. Consider follow-up family meetings when there is progression of cancer despite current therapy, complications from therapy, and when patient would be eligible for hospice (see Table 49.1).

Currently, the majority of family meetings happen in the hospital in situations where the patient is not able to make decisions for himself such as the intensive care unit
(ICU). Meetings should take place upon admission to the ICU, if a patient’s condition changes, if there is conflict within the family, or if there is conflict between family and clinicians (8,22).

TABLE 49.1 Patient- and family-centered reasons to conduct a family meeting

To provide a sense of autonomy and control

To understand their illness, disease trajectory, and treatment options

To present and understand their illness in their unique psychosocial context

To have a preference and value-based discussion for goals of care

To gain realistic expectations aligned with their goals

To actively participate in the care plan

To provide a coping mechanism and plan and prioritize for the future

To provide a platform to reframe “hope”

Lilly et al. (1) instituted early family meetings for critically ill patients which identified patient’s goals sooner and paved the road for follow-up family meetings when the clinical course became incompatible with either the patient’s goals or restoring life which subsequently permitted earlier withdrawal of life-sustaining therapy (1). Family members were more satisfied about the quality of a patient’s death in the ICU if a family meeting was held to discuss patient’s goals (23).

The data on the pediatric population mirror the adult side. The majority of parents believed they shared the same beliefs on prognosis of their children’s illness; however, 70% of parents were more optimistic than their physicians regarding prognosis again highlighting this chasm between clinicians and families (24). In the pediatric ICU, a single formal meeting results in increased shared decisionmaking (25).

THE FAMILY MEETING SETUP (THE PRE-MEETING)

Planning is an essential component to the success of any conference, and family meetings are no different. It is important that a “pre-meeting” occurs prior to the actual designated meeting with family to prevent common pitfalls (26) (Table 49.2). It is an important step to help identify the stakeholders from the medical staff who are going to be involved in the meeting. Physicians, nurses, social workers, and chaplains should be included in this step if they plan to participate in the meeting. This allows time for the medical team to discuss potential family dynamics (e.g., siblings that do not get along or distrust of medical staff) (27).

TABLE 49.2 The pre-meeting

Identify and gather key stakeholders

Review medical issues and advance directives

Identify and address areas of potential conflict

Discuss and reach consensus

Designate the “leader”

Identify key additional “presenters”

Emphasize role of empathetic active listening

The medical staff should jointly discuss the patient’s current medical condition and hospital course to date and come to a consensus regarding prognosis and treatment course. This is an opportunity to discuss with any other consultants their medical opinions and ensure that a cohesive plan is being presented to the family. Proposed treatments should be reviewed and consensus reached about what will be recommended to the family.

During the pre-meeting, the person that will lead the meeting should be designated. Each member involved should be informed of any information they will be asked to give in the meeting (update on medical condition, discuss current “brain function,” etc.). By telling each participant what they will be expected to present, they can begin to prepare what they wish to communicate to the family prior to the actual meeting (21,26). Attempts should be made to minimize “surprise revelations and opinions” during the actual family meeting.

The medical participants should review any pertinent advance directives and ensure that they understand them and are proposing a treatment plan in alignment with those directives. Careful attention should be paid to review if the patient has identified a surrogate decision maker or made any explicit statements about treatment options (e.g., feeding tubes).

By attempting to do the above prior to a family meeting, all the providers can enter the meeting adequately prepared and, more importantly, with an understanding of their role in the meeting. Each step in this pre-meeting is a potential pitfall, where things can go wrong in the family meeting. If a leader is not designated, medical provider roles are not clear, or communication regarding prognosis is not consistent, then it will be challenging to establish trust with the family and reach any conclusive shared patient-centered decisions (28,29,30).

THE ANATOMY OF THE FAMILY MEETING

The majority of evidence discussing the family meeting originates from the ICU and medical oncology literature. Though there are many different well-established methods on how to conduct a family meeting, the fundamental
principles remain constant. As discussed above, much of the work for the family meeting is done before the actual meeting. Von Gunten et al. (27) divided the actual family meeting into a seven-step process (27). We recommend a 12-step process (Table 49.3).

TABLE 49.3 The 12-step process for an effective family meeting

Step 1:	The pre-meeting
Step 2:	Meeting logistics and physical setup
Step 3:	Introductions, setting expectations, and a framework
Step 4:	Eliciting patient and family position, perspectives, and concerns
Step 5:	Establishing boundaries (if any) on information sharing
Step 6:	Communication of relevant medical fact
Step 7:	Responding to emotions and managing conflict
Step 8:	Eliciting patient-centered goals of care
Step 9:	Establishing and summarizing mutually acceptable plans of care
Step 10:	Outlining the “next steps”
Step 11:	Expressing appreciation for involvement and attendance
Step 12:	Communicating, debriefing, and documenting, in written form, a summary of the interaction

Step 1: The pre-meeting (Tables 49.1 and 49.2). Here the clinician must ascertain the following: What is the purpose of the meeting? Which individuals in the family need to attend? Who are the relevant medical team members from both the primary team and consulting team? The clinicians chosen to participate in the family meeting should meet prior to the meeting and determine who will lead the discussion. Each participant should know what the other will communicate.

Step 2: A mutually acceptable time needs to be agreed upon with sufficient prior notice to all, in order to maximize attendance (31). In an effort to better prepare the family prior to the meeting, Nelson et al. (32) discussed giving family members a written checklist of what they should consider prior to the meeting. A decisional patient can be asked who he or she wants to participate from his or her family and community, including faith leaders. In general, it is wise not to set any arbitrary limits on the number of attendees. The medical care team should likewise decide who they want to participate. It is wise to not overwhelm a family with too many health professionals. On the other hand, a physician from the primary team as well as a nurse and social worker should attend when possible; these individuals can help ensure the consistency of information as well as help deal with complicated dynamics. If the patient has a long-time treating physician whom he or she trusts, this person should ideally be present (22,26,28,33,34).

The ideal setting is private and quiet, with chairs arranged in a circle or around a table. Everyone should be able to sit down if they wish. All pagers and cellular telephones should be turned off.

Step 3: At the start of the meeting, the clinician leading the meeting should initiate introductions and have each individual present to explain their role in the patient’s care. Family should be asked to introduce themselves. Ground rules should be established, emphasizing that everyone interested in speaking will have an opportunity to do so.

Phrases that may be helpful: “We are here to discuss the next steps in the care of Mrs. X.”

If you do not know the patient or family well, take a moment to build relationship. Ask a nonmedical question such as, “I am just getting to know you. I had a chance to look at your chart and learn about your medical condition but it does not say much about your life before you got sick. Can you tell us about the things you liked to do before you got sick?” Similarly, if the patient is not able to participate in the meeting, ask family to describe the patient prior to his becoming ill: “As we get started, can you describe what Mrs. X was like before she became ill?” (35).

Step 4: Determine what the family understands. Prior to imparting information, it is recommended that the team actively listen to the patient and family and elicit their full list of concerns (14). Physicians cannot assume that patients will volunteer all their concerns spontaneously. It is important to ask the family what they know about the patient’s condition, treatment options, and prognosis using open-ended questions. The extent to which the patient’s concerns have been disclosed and resolved directly correlate with lower levels of depression and anxiety. When a holistic and thoughtful approach is taken to establish a safe space for the patient and family to discuss the issues, they feel more satisfied and may comply better with the offered advice (36,37,38).

Phrases that may be helpful: “What is your understanding of what is going on with Mrs. X?” “What has been most difficult about this illness for you?”

“As you think about your illness, what is the best and worst that can happen?”

Step 5: Multiple factors determine how much information is to be shared (Table 49.4). This will be a function of both the family’s ability to process information and how much they would like to know. The majority of Englishspeaking people in North America who have a serious illness prefer to be fully informed about a variety of topics related to their health, including diagnosis, prognosis, and treatment options (39,40,41). However, not all patients want very extensive information about their illness and prognosis (42). It is noted that patients’ information needs may be strongly influenced by their unique culture, country of
origin, or by subculture within a country. Some patients may want minimal information or nondisclosure when their life expectancy is very short (43). The evidence is inconclusive in non-western countries, but the overall trend has been more disclosure based on insightful understanding of where the patient and family are in their journey of experiencing the serious illness. Patients from some cultural backgrounds may prefer disclosure negotiated through the family when the prognosis is poor (43). Higher levels of information are often sought by younger patients (40,44,45), females (40), individuals in a middle socioeconomic class (46), and those who have a higher level of education (44).

TABLE 49.4 Factors that could influence information disclosure to patients

Culture

Country of origin

Disease progression and life expectancy

Age

Sex

Socioeconomic background

Level of education

Relationship with healthcare team

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