Lawrence A. Ho and J. Randall Curtis
Emergency medicine is typically characterized as a fast-paced, procedure-based specialty that focuses on the evaluation and stabilization of acutely ill patients. Training of emergency medicine physicians, therefore, is centered on interventions aimed at preserving life and achieving clinical stability. At times, however, when these interventions fail, the core tenets of emergency medicine can appear to be at odds with those of palliative care, which balances quality of life with the burdens of invasive treatment. In the intensive care unit (ICU) setting, successful integration of palliative care has been shown to be associated with a number of key outcomes. These outcomes include improved quality of death and dying, shorter ICU length of stay for patients who die in the ICU, increased family satisfaction, and reductions in family members' psychological symptoms after a patient's death.1–5
These benefits have also been recognized in the emergency department (ED), evidenced by positive physicians' attitudes and a growing body of literature regarding palliative care in the ED.6–11 Hospice and palliative medicine are now also official subspecialties of the American College of Emergency Physicians. Despite these advances, significant challenges remain in the successful integration of palliative care in the ED. These include medicolegal issues (which may lead the emergency physician to favor aggressive over palliative treatment to avoid litigation), a narrow view of the role of the emergency physician (perpetuating the perception that end-of-life issues should be addressed by inpatient teams), and lack of awareness among ED staff about ED palliative care resources.8,12
The importance of palliative care and end-of-life decision making in the ED is increasingly evident. The majority of seriously ill patients begin their hospital course in the ED, and decisions made in the ED frequently dictate subsequent medical decisions and therapeutic direction.13–15 Because patients who die in the ED are often elderly, ED-based end-of-life discussions and decisions are likely to become increasingly important as our population ages.6 A comprehensive discussion of palliative care in emergency medicine is beyond the scope of this book; therefore, this chapter focuses on the pillar of successful palliative care, namely, communication. In the growing literature on the role of palliative care in the ED, there is little specific guidance for ED-based discussions on end-of-life care. This review, and the recommendations made, is therefore largely extrapolated from the critical care literature.
Deaths in the hospital setting often involve withholding or withdrawing life-supporting treatments. In the ICU, the percentage of such deaths is as high as 90%.16 Limited data suggest that this proportion is considerably lower in the ED, but decisions to limit life-sustaining treatment in this setting are nevertheless common.
The decision to withhold or withdraw life-sustaining therapies should always involve effective communication, including sharing information about illness and prognosis, offering support, and engaging patients and families in the treatment decision process.17 Families rate successful communication as one of the most important skills of a quality health care provider, and effective communication has been shown to improve patient and family outcomes.18–21 Significant barriers to successful communication do exist, however; and when asked, few families consider patient–clinician communication to have been adequate.22
General End-of-Life Communication Considerations
End-of-life care in the intensive care or acute care setting typically involves multiple health care professionals from different disciplines. This is true even in the ED, where time from presentation to disposition is typically measured in hours, rather than days. It is important that all team members who communicate directly with patients and families be involved in the end-of-life decision-making process.23 Clear communication—and, ideally, agreement—within the health care team about appropriate patient care helps prevent conflicting messages to the patient or family, facilitates cooperation among clinicians, and minimizes provider internal conflict and “burnout.”24–28
Although consensus among providers is very important, the fundamental goal of any end-of-life discussion is to align clinicians', patients', and/or families' views of what is happening to the patient. The most challenging conversations occur when the clinicians' and patients' and/or families' goals of care differ. Although aligning separate viewpoints can be time consuming, these efforts, if successful, greatly facilitate future decisions about end-of-life care.23 A useful mnemonic that can enhance clinician–family communication is VALUE.17,29,30
VALUE: 5-Step Approach to Improving Communication in ICU with Families
Reproduced from Curtis et al. Practice guidance for evidenced-based ICU family conferences. Chest. 2008;134(4):835–843.
When this mnemonic was used as part of an intervention to improve clinician–family communication in the ICU, it was shown to significantly reduce family symptoms of depression, anxiety, and posttraumatic stress disorder 90 days after the patient's death.3
The appropriate time to initiate of end-of-life care conversation can be difficult to gauge. It is generally a good idea to discuss end-of-life issues as soon as possible for the seriously ill patient, although circumstances may dictate different timing.23 Conversations held early in the ED course often focus on prognosis and treatment options, rather than on withdrawal/withholding of life support and end-of-life care; even so, they can set the stage for subsequent end-of-life care conversations once the patient is admitted to the hospital. For patients with a very poor prognosis or with severe underlying terminal or life-limiting illnesses, discussion of withdrawal/withholding of life support and end-of-life is appropriate in the ED.
A recent qualitative analysis of communication between patients and providers identified six essential themes.31 These include (1) talking with patients in an honest and straightforward way, (2) being willing to talk about dying, (3) giving bad news in a sensitive way, (4) encouraging questions from patients, (5) being sensitive to when patients are ready to talk about death, and (6) listening to patients. Of these, listening to patients and families is of the greatest importance. Clinicians tend to dominate communication with patients and families; an observational study evaluating audiotapes of family conferences in the ICU found that clinicians spent 70% of time talking and only 30% of the time listening.30 This study also found that the higher the proportion of time a family spent speaking, the more satisfied the family was with the conference.
Cross-Cultural Communication and Spirituality
Cultural or language barriers may limit successful communication. Family allies, such as religious or community leaders as well as professional interpreters, can be useful in easing these barriers.32Unfortunately, even with professional interpreters, communication errors are common and can affect patient and family understanding, emotional support, and decision making.33,34 To mitigate these errors, clinicians can take several simple steps: include interpreters in a heath care team meeting prior to the family conference; speak slowly to allow time for interpretation and use pictures or drawings when possible; and try to limit simultaneous conversations.35
Spiritual care is very important to many patients and their families, but it is an area of palliative care that many clinicians identify as needing improvement.36 Family satisfaction with care is increased if spiritual care needs are assessed and a spiritual care provider is made available.37,38 Provision of spiritual care in the ED can be challenging due to time constraints; however, many hospitals have spiritual care providers available on call.
As patients are often unable to participate in end-of-life discussions in the setting of an acute or critical illness, family conferences are an essential communication tool. Even with the time constraints in the ED, the family conference can be very useful, albeit in often abbreviated form. Family conferences can also provide an opportunity for palliative care consultants to become involved in patient care. Appropriate preparations, including the use of a “preconference” and following a predetermined, semi-structured conversation format can help ensure an efficient and successful conference. It is, however, also important to be able to adapt this structure to met the needs of individual patients and family members.
Prior to leading a family conference, the clinician should encourage all active members of the team to be involved. Team members should meet in a “preconference” to agree on conference goals and to identify issues or conflicts likely to arise either between team members or with the family during the meeting.23
Many family conferences follow a similar structure.39 This structure typically includes (1) individual introductions and a quick discussion of the goals and agenda, (2) asking the family to describe their understanding of what is happening, (3) an information exchange about the illness and treatments (from clinicians, generally) and about the patient's preferences and values (from the family, generally), (4) a discussion of the prognosis for survival and quality of life, and (5) a discussion of the goals of care and decisions that need to be made.
Several studies have shown that certain conference features result in improved ratings for communication and family experience. These include holding the meeting in a private place, consistent communication among all members, assuring families that patients will be kept comfortable and will not be abandoned no matter what treatment path is followed, and the use of empathic statements by the clinicians.40–42
At the conclusion of family conferences, it is important that the clinicians make a recommendation. There is a tendency for some clinicians to merely describe the treatment options, but avoid providing a recommendation.43 In cases of withholding or withdrawing life support, recommendations are often particularly important. It is not uncommon for family members to resist being put in the position of making the decision to “give up” or “pull the plug.”
Often, family members must make critical decisions for their loved ones. In this case, it is important for the clinician to understand and convey the principles of surrogate decision making. The surrogate is asked to consider what the patient would want if he or she could speak for himself or herself—and not to weigh his or her own preference for the patients' care—or what he or she would choose if placed in the patient's situation. This clarification can be especially helpful when the surrogate is faced with continuing or discontinuing life-sustaining therapy.
There is a range of potential roles for physicians in the end-of-life decision-making process. Several critical care societies have issued a joint consensus statement advocating a shared decision-making approach,44 in which the physician and family share their opinions and jointly reach a decision (Fig. 60.1). Family members and patients may prefer varying degrees of involvement in the decision-making process, so it is important for the physician to take time to determine individual family members' preferred roles.45 It is also important for the physician to understand that the spectrum of preference ranges from allowing the physician to make the decision, to family members assuming full responsibility for the decision. As the prognosis of a patient worsens, the physician's willingness to take on the burden of a decision should increase.
Figure 60.1 A schematic for approaching decisions about withholding and withdrawing life support in the ED. Reproduced from Curtis et al. Practice guidance for evidenced-based ICU family conferences. Chest. 2008;134(4):835–843.
Resuscitation is a common topic of end-of-life discussions and family conferences. Resuscitation following a cardiac arrest should follow the adult cardiac life support (ACLS) algorithm. While it is possible for a family to consider separate components of the ACLS algorithm (chest compressions, intubation, medications, cardioversion, etc.), these discussions can be unnecessarily complex and can lead to unrealistic expectations (e.g., chest compressions and cardioversion, but no intubation). In general, resuscitation should be discussed as a single entity.
The feeling of abandonment, in both patients and families, is common in the end-of-life process. Although patients and families usually do not use the word “abandon,” they express this feeling in different ways. Families may either request that everything be done to cure the patient despite overwhelmingly poor chances for survival, or they may express concerns about “letting go” or “giving up.”46 Being aware of these expressions helps the clinician address such concerns. Ensuring that the patient is not suffering and that his or her end-of-life preferences are respected supports nonabandonment. Clinicians should also be mindful of language that may heighten a sense of abandonment. For example, “withdrawal of care” should not be used synonymously with “withdrawal of life support.” Following a decision to withdraw or withhold life-sustaining treatments, some patients and families may be worried about transferring to a less intensive care area of the ED; in this case, the clinician should convey that the patient will continue to receive timely and appropriate treatment.
After having an end-of-life conversation with the family, it is imperative to explore the families' reactions and feelings.39 Several approaches can be used. First, the clinician should summarize what the patient or family has said. This active listening technique verifies to the patient or family that they have been heard; it is especially useful when the clinician and family have differing views. Second—since strong emotions often develop during conversations about prognosis or end-of-life care—the clinician should recognize the family's emotions and explore how and why patients and family members feel the way they do. Exploratory questions, such as “tell me more about that,” and reflective statements, such as “it seems to me that you are very upset,” can draw out and support family members in the discussion. Finally, once a decision has been made, the clinician can support the family by acknowledging the difficulty of the situation, expressing agreement that the decision is consistent with the patient's values, and voicing appreciation for all family members' comments.
While challenges to successful implementation of palliative care in the ED remain, there is a growing awareness that conducting effective end-of-life discussions is an important component of the ED clinician skill set. Effective communication is a prerequisite to good palliative care, and, although multiple barriers to this goal exist in a busy ED, the evidence-based strategies discussed in this chapter can help clinicians, patients, and their families find common ground.
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