214 Conversations with Families of Critically Ill Patients
Intensive care unit (ICU) family conferences concerning the care of critically ill patients can be watershed events—clarifying prognosis, delineating goals of care, and providing support to family members and surrogate decision makers. Because the vast majority of critically ill patients lack decisional capacity,1 families and surrogate decision makers are often centrally involved in medical decision making. Nearly a quarter of deaths in the United States occur in the ICU,2 and the majority of patients who die in the ICU have had life-sustaining measures limited or withdrawn.3,4 A decision to withhold or withdraw life support is often preceded by a family conference specifically addressing goals of care and treatment plans. Furthermore, the care of most critically ill patients should involve an explicit discussion with surrogate decision makers about the goals of care and treatment plans. Coping with a critically ill family member is challenging for surrogate decision makers, and many feel ill equipped to make decisions on behalf of their loved ones. Skilled communication by an interdisciplinary ICU team is associated with improved outcomes for both patients and family members.5
Leading an effective family conference requires specific teachable clinical skills, and our aim is to present an evidence-based approach to communication with families of critically ill patients. This chapter will first provide an introduction to medical decision making, with a particular emphasis on shared decision making. We will discuss a rationale for the importance of family conferences for all critically ill patients and address practical issues including considerations of physician reimbursement and billing. We will then present an evidence-based approach for family conferences, highlighting specific competencies and protocols that have been developed to improve physician-family communication. Finally, we will address issues of cultural competency and spirituality as they relate to the care of critically ill patients and their families.
In 1992, Emanuel and Emanuel6 described four models of medical decision making: paternalistic (also known as parental or priestly), informative, interpretive, and deliberative. The parental model for physician-patient decision making frames the physician as the patient’s guardian, interpreting diagnostic information and developing and implementing a therapeutic plan that he/she feels is in the patient’s best interest. In the informative model, the physician provides information to the patient, who then chooses from treatment options—assuming that patients are expert in their own personal values and when given information by their physician can make the medical decision that is in their own best possible interest. The interpretive model defines the physician as counselor, not only providing medical information, as in the informative model, but also helping to elucidate and clarify patients’ stated values and advising patients in terms of which interventions would be most in keeping with the patient’s values. Finally, the deliberative model frames the physician as teacher or friend, not only engaging in discussion about medical information and elaborating personal values but also advising and even persuading a patient to make particular decisions, reflecting the physician’s understanding of the patient’s personal values.
The physician-patient or physician-surrogate relationship can be conceptualized on a spectrum, with parentalism at one end, informed consent (akin to Emanuel and Emanuel’s informative model) at the other, and shared decision making in between. Shared decision making describes a relationship in which information is passed from physician to patient or surrogate, and both parties share opinions about treatment choices before a decision is jointly reached. There is consensus among multiple critical care societies in Europe and North America that shared decision making should be the default model for physician-patient and physician-surrogate communication in the ICU setting.7,8 Though most patient surrogates prefer a shared decision-making approach,9 there is considerable heterogeneity among patients and families with regard to their desired role in decision making. In the interest of patient-centered care, it is imperative to individualize one’s approach. A recent U.S. study shows that physicians use the full spectrum of models of decision making but suggests that they do not routinely assess surrogates’ desired level of involvement in medical decision making. Rather than individualizing their approach to match surrogate preferences, individual physicians often have one approach they use with all surrogates.10
The experience of family caregivers and surrogate decision makers is undeniably challenging. Informal caregivers are under tremendous stress and have higher rates of psychological symptoms than the general public.11 For example, the prevalence of anxiety and depression symptoms in family members of critically ill patients is remarkably high,5,12 and symptoms of posttraumatic stress have been shown to be present in a majority of family members of critically ill patients, with 82% of family members who were asked to participate in medical decision making demonstrating symptoms of posttraumatic stress 90 days after discharge or death.13
In addition to the affective difficulty inherent in coping with a sick loved one, surrogate decision makers are asked to participate in complex medical decision making with which they may have very little prior experience. Communicating clearly about goals of care and withdrawal of life-sustaining interventions as well as exploring families’ wishes about withdrawal of life support can contribute to family support and satisfaction.14 Though clinicians may be familiar and comfortable with the fast pace of ICUs, the tempo of medical decision making can pose a particular challenge to surrogate decision makers. A recent study demonstrated decreased family satisfaction associated with a longer ICU stay, but family satisfaction increased when withdrawal of life-sustaining interventions was prolonged,15 especially for those patients with a longer ICU stay. This suggests that families may benefit from time to come to terms with medical decisions and their personal feelings of loss.
Many palliative medicine and critical care specialists suggest that surrogate decision makers employ the principle of substituted judgment when participating in medical decision making.16,17 In the absence of an existing healthcare directive, we ask that surrogate decision makers imagine what the patient would want were they able to actively participate in decision making. Despite widespread endorsement of the substituted judgment standard by the medical community, significant concerns, both ethical and pragmatic, have been raised.18 The first cites the frequency with which patients change their minds regarding medical decisions and preferences, especially true among patients who have not completed an advance directive.19–21 That said, though many patients change their minds with regard to treatment preferences, most studies evaluating stability in preferences have shown that a majority of patients maintain consistency in their wishes regarding medical decisions.22–23
Some authors have raised concerns about the accuracy with which surrogate decision makers can predict what choices patients would make.18 A meta-analysis by Shalowitz et al.24 found that surrogate decision makers were 68% accurate in their predictions regarding patient treatment preferences. Several subsequent studies have found similar rates of accuracy between patient-surrogate pairs; furthermore, in cases in which surrogates are inaccurate in substituted judgments, their stated preferences on behalf of the patient more closely represent their own personal beliefs about end-of-life care.25,26 One study asked patients the following question: if there were a discrepancy between the surrogate’s decision and the patient’s previously stated wishes regarding CPR, which should take precedence? Over three-quarters of the patients preferred that physicians follow the stated preferences of the surrogate.27
There is significant variability in the amount of decision control desired by patients over their designated surrogates, though the majority of patients have been shown to prefer implementation of a substituted judgment standard over a best interest standard.28 Further, there is heterogeneity in the factors weighed by surrogates in medical decision making, including substituted judgment, but also other factors such as shared experiences with the patient and the personal values and preferences of the surrogate decision maker.29,30 Although this is a complex issue, substituted judgment should generally be a higher standard for decision making than the best interest standard.
The absence of an advance directive has been identified as a barrier to effective end-of-life care in the ICU setting,31 although significant and valid concerns have been raised as to their usefulness and relevance.32 Advance directives were not especially widespread in the past: one small retrospective study of 61 patients found that one-third of those who died in the hospital entered with advance directives,33 though others have described much lower usage—between 5% and 11%.34–36 Although advance directives have not been shown to change the type of care provided to patients32,37 at the end of life, the presence of an advance directive is associated with higher family assessment of the quality of the dying process for patients in the ICU.38 Advance directives can be helpful to surrogate decision makers, lessening the burden involved in attempting to implement substituted judgment. Therefore, even though advance directives may be limited in their ability to directly guide care, there is value in advance care planning for those patients who ultimately require critical care.
Robust communication between clinicians, nurses, and families of all critically ill patients is important, not only with families of patients who are imminently dying. Family members who felt that communication in the ICU was inadequate were at higher risk for posttraumatic stress disorder,13 even those with loved ones who survived their ICU stay. Furthermore, families of patients who survive their ICU stay are actually more likely to be dissatisfied with their ICU care with respect to domains such as inclusion in decision making, communication, emotional support, respect and compassion shown to family, and consideration of family needs.39
Pragmatic and logistical issues can shape the experience of surrogate decision makers in the critical care setting. Even physical space can have an important effect: a French study40 found that family members of patients in private ICU rooms had a lower incidence of anxiety and depression symptoms compared with families of patients in multi-bed rooms. Additionally, the same group found that the absence of a dedicated room for family conferences was associated with increased anxiety symptoms among family members of critically ill patients.12 Accessibility of physicians and access to information also correlates with family satisfaction; inaccessibility has been correlated with conflicts related to prognosis,41 suggesting that surrogate decision makers are more satisfied when clinicians are accessible and comprehensive in their communication.
According to guidelines from the Center for Medicare and Medicaid Services (CMS), U.S. physicians are permitted to bill for time spent consulting with surrogate decision makers either in person or by telephone. Furthermore, critical care clinicians are permitted to bill for critical care time, provided the following criteria are met:
As of October 1, 2009, palliative care clinicians in the United States are recognized as an independent medical subspecialty by Medicare and as such can bill for their consultative services. Previously, prolonged service codes, frequently used in palliative care billing, required that additional time be spent “face-to-face” with the patient, meaning that time spent in meetings outside of the patient’s room between clinicians and surrogate decision makers was not compensated. This changed in 2009, such that clinicians can now bill for prolonged service time spent charting, reviewing records, coordinating care with other clinicians, and importantly, meeting with surrogate decision makers outside of the patient’s room.43 Claims have been denied for palliative care specialists who are credentialed in the same specialty as the primary team physician, though these denials have been successfully appealed.43 Of course, specifics regarding billing for both critical care and palliative care specialists change over time, so clinicians will be well served to familiarize themselves with the most updated billing guidelines.
Patients and families are consistent in defining high-quality care in the ICU: timely, clear, and compassionate communication by clinicians; clinical decision making focused on patients’ preferences; patient care maintaining comfort and dignity; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who die.44
Family conferences in the ICU setting are challenging, both for families and clinicians, but it is important to remember that the optimal skills to facilitate these sessions are both teachable and rooted in evidence. Utilizing these skills has the potential to improve outcomes for both patients and family members. Studies suggest that planning conferences early in the ICU stay is beneficial: family conferences held within the first 72 hours of ICU stay are associated with both decreased use of critical care resources among patients who die45 and higher family assessments of the quality of death and dying.38 Consistent communication across the medical team is also important; having a “preconference” prior to family conferences can ensure that families are given a consistent message.46 As discussed earlier, having a dedicated room for family conferences is also associated with decreased anxiety among family members.12
It should come as no surprise that empathic communication is one of the cornerstones of leading an effective family conference. Focusing on listening to concerns of family members is particularly important; most physicians spend a majority of time talking rather than listening when meeting with patients and families.47 Families have been shown to have higher levels of satisfaction and lower levels of perceived conflict with clinicians who speak less and listen more.5,47 Family satisfaction is associated with the use of empathic statements, though this is a commonly missed opportunity; one study found that a third of physicians in the ICU missed an opportunity to use empathic statements in family meetings.48 Table 214-1 summarizes categories and examples of empathic statements that can be used by clinicians in family conferences. The “Ask-Tell-Ask” approach advocated by Back et al.49 (Table 214-2) is a helpful tool to assess baseline understanding and evaluate understanding of the information provided.
|Empathy about surrogate decision making
Withholding or Withdrawing Life Support: “This is really hard. There’s not a right answer to this situation.”< div class='tao-gold-member'>
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