Chapter 8 Sara K. Johnson By definition, palliative medicine aims to provide care both to patients and their families; this premise of inclusion of family is also considered a standard for end-of-life care. It is important to recognize that the term “family” is broadly used in palliative medicine and applies to a myriad of relationships—relative, legal, financial, emotional—that the patient has within his or her support system. Evidence reveals improved patient, family, and medical system outcomes when using a holistic approach to care of seriously ill patients that includes care of their families. For patients, maintaining strong communication with family members, including their involvement in decision-making, defines quality end-of-life care [1]. Patients also express preferences to have family members involved in medical decision-making, and some even defer decision-making completely to their families. Notably, supportive family members are associated with improved patient quality of life and less symptom burden [2]. Ensuring their families are not burdened, both emotionally and otherwise, is also important to patients at the end of life [1]. Family members of seriously ill patients also benefit from attention to their needs. Many seriously ill patients require significant assistance from family caregivers; this demanding role frequently results in anxiety and depression and is associated with increased risk of mortality [3]. Not surprisingly, family satisfaction with end-of-life care in the hospital is higher, and the likelihood of complicated bereavement is lower with better communication and emotional support from clinicians [3]. From a logistical standpoint, it is often necessary to include families intimately in patients’ medical care, as a large proportion of hospitalized patients are unable to make medical decisions. Unfortunately, in hospital settings, communication with families needs improvement: as many as half of family members of seriously ill patients do not understand their loved one’s diagnosis, prognosis, or treatment [4]. Surrogate decision-makers who perceived better communication from physicians had family members with a shorter lengths of life-sustaining treatments [5]. This is consistent with studies on communication interventions for families of hospitalized patients at high risk of death, which have shown decreased hospital and ICU length of stays and less resource utilization [6, 7]. As outlined, focusing care on not only the patient during hospitalization, but also on family members, has positive effects on patients, families, and medical systems. There are various approaches to improve communication with seriously ill patients’ families in the hospital: family meetings (see Tables 8.1 and 8.2), involving interprofessional team members (e.g., nursing, social work, and spiritual care), and education in a variety of media, perhaps even brochures [8]. Communicating well with families involves noting and responding to statements made by family members, which can be missed during family meetings [9]; an important aspect of good communication is empathic responses to the emotions of families, as outlined in Chapter 7. Table 8.1 General Principles for Family Meetings Table 8.2 Framework for a Family Meeting Many seriously ill patients are unable to make medical decisions, in which case we turn to surrogate decision-makers to assist with guiding medical care. The designated surrogate decision-maker is either a patient-appointed healthcare power of attorney or, if that is lacking, typically the next of kin. The standard approach to surrogate decision-making is substituted judgment: the surrogate decision-maker decides on the treatment course the patient would choose for him- or herself if he or she were able. However, the process is often not straightforward. Surrogate decision-makers are frequently inaccurate in their assessment of patients’ preferences for treatment and, perhaps not surprisingly, err on the side of providing more interventions than patients would want, rather than less [10]. There is often conflict perceived with staff and significant emotional distress associated with this role [11]. The role of surrogates in medical decision-making varies, with a spectrum of involvement, from the surrogate making the choice without input from the physician, to shared decision-making, to the physician deciding alone (paternalistic). Shared decision-making has been highlighted as the ideal model; however, surrogate decision-makers vary in their preferences for what role in decision-making they desire to have [12]. Notably, many surrogate decision-makers prefer to have the consensus and involvement of their family when deciding on medical treatment for a loved one [13] and are more confident in their roles when physician communication is better [5]. Surrogates cite that having enough time to process information and make decisions is important [13, 14] and that having the physician help to facilitate family consensus is helpful [15]. It is clear that to assist surrogate decision-makers in these serious choices, it is crucial to have thorough, clear, and open communication with them that includes the aspects listed in Table 8.3 [12, 13, 16, 17]. Table 8.3 Best Practice Approach to Assist Surrogate Decision-Makers Family conferences are a tool that can meet the needs of family members, including assistance with decision-making and improved communication. Family members of seriously ill patients have been found to have less psychological distress and more consensus between family members with scheduled “proactive” family meetings in the ICU [7, 8]. What follows is a framework on how to approach leading a family meeting (see Table 8.2). The evidence base on how to approach family meetings is growing, and though there is no definitive consensus on structure, many observed and recommended meeting components in the literature are similar to this framework [3, 18–20]. Further, though we often think of a family meeting as one occurrence, most families will need multiple meetings over the course of a patient’s hospital stay, so it is important to not try to accomplish too much over one meeting. For example, a first meeting might establish concerns that the outcome might be poor, another confirms that the patient is not doing well, another describes the process of withdrawing life support, and a final meeting prepares to transition to comfort care. BEFORE the Family Meeting. Preparation is key and the most important aspect of a successful family meeting. Premeeting planning should include the following. One should have a clear discussion goal for a family meeting and keep in mind that the reason for the meeting should not be only the medical team’s agenda but also the patient’s and family’s agenda. A useful way to frame this is, “Our goal is to help the family/patient [fill in the blank].” For example, it could be “…to help the family understand how critically ill a loved one is” or “to help the family/patient make a decision about continuation versus withdrawal of life-sustaining therapies.” It is also important to speak with the patient and family before the meeting about what you want to talk about: to prepare them, as well as to assess what they wish to discuss. Though it is important to set a goal before a meeting, it is also important to adjust this goal based on feedback from the family. For example, if you hoped to address code status, but the family does not feel ready to, this topic may need to be deferred to a later meeting. A successful family meeting is dependent on ensuring that the appropriate people are at the meeting. Consider which medical providers and interprofessional team members should attend, and who is important to be there from the patient and family’s perspective. If the agenda includes discussing cancer prognosis and treatment options, it will be helpful to have an oncologist present; if you will be discussing a hemodialysis decision, a nephrologist. Ideally, providers who have an established relationship with the patient should attend, such as a primary care provider or primary oncologist; however, in reality this if often not feasible. At the very least, having discussed the situation with subspecialists or primary providers will provide you with important information and credibility.
Family Meetings and Caring for Family Members
8.1 WHY CARE FOR FAMILIES OF PALLIATIVE CARE PATIENTS?
8.2 EFFECTIVE COMMUNICATION WITH FAMILY MEMBERS
BEFORE the Family Meeting
WHY Are You Meeting? The Goal Should Be Clear in Your Mind
“To help the patient and family [decide on whether or not to continue life-supportive therapies, etc.]”
WHO Should Be at the Meeting? The Participants
Decide Who is LEADING the Meeting
WHERE? The Setting
WHAT Is Going On Medically? WHAT Are the Options? Discuss at PREMEETING
DURING the Family Meeting
Start with Introductions
Set the Agenda
“We want to update you on your father’s health and discuss options for next steps for his medical care. Is there anything else you were hoping to talk about during this [x] minute meeting?”
Sharing of Knowledge
“What have you been told about what is going on with your father’s health right now?”
“I know we have had a lot of discussions about your father’s medical situation, but to make sure I have been explaining well, I would like to hear your understanding of what is going on with his health right now?”
“Unfortunately, I have bad news; your father’s lung and kidney failure are getting worse and he is likely going to die in the hospital”
Respond to Emotion: Use Empathic “NURSE” Statements and Give the Family the Time They Need
Eliciting Values and Goals: Open-Ended Questions to Assess What Patient Would Want
“If your father were able to be here and discuss his health with us, what do you think he would want given how sick he is?”
Decision-Making
Make a RECOMMENDATION
Summarize and Wrap Up
AFTER the Family Meeting
Debrief with Other Providers and Carry Out Plan
8.2.1 Assistance with Surrogate Decision-Making
8.2.2 The Family Meeting: A Framework for Family Decision-Making
WHY Are You Meeting? The Goal.
WHO Should Be at the Meeting? The Participants.
Related posts:
Dyspnea: Management in Seriously Ill Hospitalized Patients
Hospital Care for Seriously Ill Patients and Their Families
Prognostication: Estimating and Communicating Prognosis for Hospitalized Patients
Self-Care and Resilience for Hospital Clinicians
Delirium: Identification and Management in Seriously Ill Hospitalized Patients
Interdisciplinary Team Care of Seriously Ill Hospitalized Patients
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