Abstract
Excellent communication is a foundation of shared decision making. As discussed throughout this book, shared decision-making is a collaborative process of (1) exchanging medical and personal information about patients’ values, goals and preferences, (2) deliberation about how to apply these values to the clinical situation and (3) development of a treatment plan that reflects these values. This process is a very complex communication task. Unskilled clinicians may leave decisions largely to the discretion of surrogates without providing adequate support, and surrogates may struggle to make patient-centered decisions rather than decisions based on their own values, resulting in higher levels of post-traumatic stress disorder and depression.1 Conversely, in a recent study of recorded family meetings regarding ICU decision-making, fewer than one-half included deliberation about how to apply a patient’s values and preferences to the clinical situation.2
Excellent communication is a foundation of shared decision making. As discussed throughout this book, shared decision-making is a collaborative process of (1) exchanging medical and personal information about patients’ values, goals and preferences, (2) deliberation about how to apply these values to the clinical situation and (3) development of a treatment plan that reflects these values. This process is a very complex communication task. Unskilled clinicians may leave decisions largely to the discretion of surrogates without providing adequate support, and surrogates may struggle to make patient-centered decisions rather than decisions based on their own values, resulting in higher levels of post-traumatic stress disorder and depression.1 Conversely, in a recent study of recorded family meetings regarding ICU decision-making, fewer than one-half included deliberation about how to apply a patient’s values and preferences to the clinical situation.2
The setting for this complex task is the family meeting or the “goals of care” meeting. Data show that high-quality communication during a family meeting is difficult to achieve. After family meetings, surrogates often report inadequate understanding of diagnosis, prognosis and treatment plans.3 Surrogates may struggle to make decisions that result in dying or changes in quality of life, even when they are consistent with a patient’s values. Physicians report uncertainty about responding to emotion during meetings, endorse little time to engage in the meetings and note inadequate training to perform the skills that result in high-quality discussions.
This chapter outlines a framework for goals of care conversations during a family meeting. The purpose of the goals of care meeting is to discover the goals and values of a patient, either directly or from their surrogate. This chapter highlights the key communication skills used during these conversations to explore patient’s goals, values and preferences and then make a care plan that matches these preferences with appropriate medical treatments. For the purposes of this framework, we assume that prior family meetings have taken place to establish rapport, determine surrogate decision makers, understand their decision-making preferences and deliver serious news. Table 4.1 outlines the road map of the meeting.
Table 4.1. A communication framework for shared decision-making in the intensive care unit
Of note, the skills highlighted in this framework apply to many other communication tasks in the intensive care unit (ICU), including delivering serious news and planning for end-of-life care. Not all of the tasks need to be done at once. Some families may need to reflect on and grieve over the clinical condition and prognosis before moving on to discussing values. Others may need to discuss options with extended family before developing a plan. Given this caveat, it is important to check in with family members with, “Is it OK if we talk about next steps?”, to ensure it is safe to move through the framework.
4.1 Framework Steps in Detail
4.1.1 Gather the Clinical Team for a Pre-Meeting
Shared decision-making requires an accurate and consistent exchange of medical information. The meeting before the meeting with the entire clinical team is an opportunity to reach a consensus on the prognosis, explore the therapeutic options and determine the goals for the family meeting. The clinical team should include the attending physician, relevant consultants, bedside nursing and social workers. It may be overwhelming to have all of these team members present; at subsequent family meetings, the primary physician and bedside nurse should ideally always be present. Their dual presence provides uniform communications, can decrease anxiety in family members and can decrease ICU nurse and physician burnout.4 Determine who will be leading the family meeting, keeping in mind that family satisfaction decreases when multiple attending physicians are involved in a patient’s care.5 At this time, it is also important to ensure that an interpreter is available if needed.
4.1.1.1 Meeting Location and Setup
Ensure that the meeting takes place in a private space and at a time that is scheduled with the family’s needs in mind. Ideally, a conference room or designated family meeting room provides the space and seating for all involved to sit and participate comfortably. One should remain mindful of special needs, such as hearing impairment or the need to navigate wheelchairs into a space that allows everyone to participate fully. When preparing a room for the meeting, it is important that the primary physician and nurse are located in a position that allows them to both be seen and heard easily; the same should be done for the primary family spokesperson.
In many circumstances in the ICU, family meetings take place without the presence of the patient themselves. When they are able and desire to participate meaningfully in the conversation, every effort should be made to enable their participation.
When a key family member is unable to attend the meeting in person owing to timing, travel or other reasons, involving them virtually can expedite the process, prevent the spread of misinformation and allow direct questioning by the participant. In the current digital age and in light of recent visitor restriction policies secondary to coronavirus concerns, many applications exist and are readily being developed that can allow for multiperson video conferencing. In these circumstances, it is important to ensure that family participants, as well as the clinical team, are facile with the technology before the meeting, to decrease technologic frustrations that may hamper the discussion. The remaining steps of this family meeting framework should be unchanged and support the use of teleconferencing.
4.1.2 Introduce Everyone at the Family Meeting
Family can be anyone important enough, biologically related or not, to be present at a conversation with a clinician. Ensure that each family member introduces themselves and how they know the patient. Understanding these relationships can give insight into how the family makes decisions or how they support the patient and surrogates in decision-making. Each member of the medical team should also introduce themselves and their role. Surrogates do not always understand the different levels of training or roles of their health-care team, so it is important to avoid jargon.
4.1.3 Use Ask–Tell–Ask to Exchange Information about the Clinical Condition and Prognosis
Ask–Tell–Ask is a communication strategy designed to transmit medical information based on an understanding of the patients/surrogate’s comprehension of the medical situation.
4.1.3.1 The First Ask
Rather than “delivering an opening monologue” about the medical facts, the first “Ask” is an open-ended question designed to understand a family’s perspective.6
We know you have met a lot of doctors over the past few days. Can you help me understand everything you have been told so far about your mother’s illness?
Allowing the family to share their perspective reveals how well they understand the facts and helps to determine what other information may be most helpful to the family. Listening to their perspective elicits their concerns and indicates the team is present to hear their worries. In a large family meeting, ensure that all members have an opportunity to express their understanding.
4.1.3.2 The Tell
After ensuring everyone is heard, a permission statement can signal that key information is about to be delivered.
You all have a good understanding of this illness. Is it okay if I talk about how this affects his prognosis?
Related posts:
Chapter 2 – How Much Does the Family Want to Be Involved in Decision-Making?
Chapter 5 – The Do-Not-Resuscitate Order
Chapter 6 – The Do-Not-Intubate Order
Chapter 14 – Potentially Inappropriate Treatment and Conscientious Objection
Chapter 20 – Brain Death Discussions
Chapter 13 – Severe Traumatic Spinal Cord Injury
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