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States occur in the ICU,2 and the majority of patients who die in the ICU have had life-sustaining measures limited or withdrawn.3,4 A decision to withhold or withdraw life support is often preceded by a family conference specifically addressing goals of care and treatment plans.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
Medical Decision Making
Models of Medical Decision Making
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
Surrogate Decision Makers
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.
Substituted Judgment versus Best Interest
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.
Role of Advance Directives
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.
Family Conferences in the ICU
Importance of Family Conferences for All Critically Ill Patients
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
Practical and Logistical Considerations
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.
Billing and Reimbursement
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.
Evidence-Based Approach to Communication during Family Conferences
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.
| Category | Sample Statements |
|---|---|
| Empathy about surrogate decision making |
Withholding or Withdrawing Life Support: “This is really hard. There’s not a right answer to this situation.”
|
Adapted from Selph RB, Shiang J, Engelberg R, Curtis JR, White DB. Empathy and life support decisions in intensive care units. J Gen Intern Med 2008;23:1311-7.
TABLE 214-2 “Ask, Tell, Ask” Approach to Discussing Difficult Communication Tasks
| Step | Function | Sample Phrases |
|---|---|---|
| “Ask” | Ask the patient/patient surrogate to describe his/her understanding of their medical disease and prognosis. | “It would help me to know what your other doctors have told you about your father’s illness.” |
| “Tell” | Explain to the patient/patient surrogate, using simple straightforward language, what you understand about their medical disease and prognosis. | “Unfortunately, it looks like your father’s illness is getting worse. With disease as serious as his, 9 out of 10 patients will die within 1 month, and 1 out of 10 will be alive at 1 month. If your father survives this illness, it is very likely he will have significant disability and will likely be unable to live independently.” |
| “Ask” | Assess the patient’s/patient surrogate’s understanding. | “I want to make sure that I explained things clearly. Can you tell me, in your own words, what I just told you about your father’s illness?” |
Adapted from Back AL, Arnold AM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult communication tasks in oncology. CA Cancer J Clin 2005;55:164-77.
Assurances to families and surrogates that patients will not be abandoned before death, that efforts will be made to provide comfort and minimize suffering, and statements of explicit support for medical decisions to either continue or withdraw life-sustaining interventions are associated with higher levels of family satisfaction.50 Use of the VALUE mnemonic (value, acknowledge, listen, understand, and elicit—summarized in Table 214-3) to enhance clinician-family communication has been shown to improve mental health outcomes, including symptoms of depression, posttraumatic stress disorder, and anxiety in family members.5 Interestingly, family meetings using this tool were somewhat longer than the usual care meetings, and the percentage of family speech was also higher.
TABLE 214-3 VALUE Tool to Enhance Communication in the ICU
| V | Value family statements |
| A | Acknowledge family emotions |
| L | Listen to the family |
| U | Understand the patient as a person |
| E | Elicit family questions |
Adapted from Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007;356:469-78.
Discussing Prognosis
Despite the ethical responsibility to inform patients about prognosis, many clinicians are uncomfortable doing so and identify it as one of the most difficult parts of their job.51 Physicians in the ICU are more likely to discuss functional prognosis rather than likelihood of survival. In one study,52 clinicians did not discuss survival prognosis in over one-third of family conferences in which the attending physician anticipated there would be discussion of withholding or withdrawing life-sustaining interventions or discussing bad news. Because patients with a poor prognosis are more likely to decline life-sustaining treatments,53,54 discussion of prognosis is critically important. Interestingly, surrogates rely upon far more than just the prognostic information provided to them by physicians,30 though most try to balance their own assessment of the patient with the information provided by physicians in understanding prognosis. Surrogates also report that they understand and appreciate explanations of the uncertainty involved in prognostication.55
Experts recommend framing prognosis numerically rather than using nonspecific terms (e.g., “1 in every 10 patients” rather than “uncommon” or “low risk”), framing prognosis both positively and negatively, and using consistent denominators when presenting rates of risk (e.g., “9 in every 10 patients with illnesses as severe as your father’s will die within 1 month”, and “1 in every 10 patients with illnesses as severe as your father’s will be alive in 1 month”).56 Despite these recommendations, a minority of critical care physicians use numeric estimates in discussing prognosis57 and/or verify whether or not surrogate decision makers have understood the information provided.
Discussing Resuscitation
Most patients and their families have little personal experience with the critical care setting or with cardiopulmonary resuscitation (CPR). Interestingly, knowledge of the probability of survival from CPR affects patient’s choices about code status.54 Unfortunately, many people base their assumptions on the likelihood of surviving CPR on information from medical dramas on television, which dramatically over-represent favorable resuscitation outcomes.58,59 Recent consensus guidelines have highlighted specific recommendations in discussing resuscitation with patients,60 some of which may help guide discussions with surrogate decision makers as well. The authors recommend that, among other events, admission to a critical care unit should serve as a trigger for discussion of resuscitation preferences. Another important recommendation is that the discussion be framed to review the overall goals of care rather than merely focusing on code status. It is also important to make a distinction between life-sustaining interventions and CPR, describe cardiac arrest and care plan options (including palliative care) in detail, offer quantitative information about the patient’s likelihood of surviving to hospital discharge after resuscitation, offer a code status recommendation, and focus on trust and rapport building. In summary, CPR in the critical care setting is best addressed in the context of the greater goals of care, including a candid discussion of the likelihood of CPR survival and care alternatives, including palliative and symptom-focused care.
Role Of The Interdisciplinary Team
The complexity of critical care requires the involvement of a multidisciplinary team. However, conflicts between nurses and physicians are common,61 particularly in the setting of end-of-life care, and are a source of significant work stress and burnout.62–64 Enhanced nurse-physician communication and collaboration has been associated with higher patient satisfaction65,66 and a lower incidence of anxiety and depression symptoms among families of critically ill patients,12 as well as lower rates of burnout among nurses and physicians.62,63 Improving communication among the multiple clinicians within the ICU—physicians, nurses, respiratory therapists, and social workers—would undoubtedly improve not only workplace relationships and stress, but also patient care and integrated communication with families and surrogate decision makers.67
Palliative care specialists are an increasingly common hospital resource. Involvement of a multidisciplinary palliative care team is associated with increased patient satisfaction as well as decreased rates of ICU admission following hospital discharge and significant cost savings.68
Role Of Protocols And The Importance Of Individualization
Many of the communication strategies that have demonstrated efficacy were implemented using interventions designed with specific protocols. The tenets of patient-centered care affirm the importance of tailoring our communication and interactions to specific patients and their families, rather than resorting to a rote scripted dialogue. However, given the many missed opportunities in the current level of communication with patients and surrogate decision makers in the critical care setting,69 it is certainly reasonable to look to communication approaches that have been rigorously developed and studied. Specific guidelines relating to communication techniques and strategies are intended as a starting point, and clinicians are encouraged to integrate these with their own personal approach and authentic voice.
Cultural Competence
Cultural considerations are fundamental in talking with families and surrogate decision makers from diverse backgrounds. Utilizing language interpreters and cultural mediators is critical in facilitating communication with patients and families who speak different primary languages than clinicians. In an ideal setting, the role of an interpreter transcends mere strict literal translation. Interpreters can assume the role of a cultural mediator, helping to interpret content bi-directionally. Even with the best cultural mediators, however, there are significant challenges inherent when language discordance exists. Interpretation of family conferences is a difficult process which can include critical errors, and it is difficult to provide emotional support for families in this circumstance.70,71 Implementing best practices such as a preparatory meeting with interpreters prior to the clinical encounter, speaking slowly, confirming the patient’s or family’s understanding, and debriefing with the interpreter after the clinical encounter can facilitate better communication and decrease potential for misunderstandings.72–73 Table 214-4 details some specific questions clinicians can ask of families to better elucidate cultural considerations that may be shaping understanding and attitudes toward care.74
TABLE 214-4 Questions to Improve Cultural Understanding of Illness
| Domains | Questions |
|---|---|
| Preface | “The kinds of care we provide and the way we talk to patients may be different here than in the country you came from. I want to provide you the best possible care, so it would help me if I understood more about your culture.” |
| Acculturation | “What language do you speak at home?” “In what language do you watch television or read the newspaper?” “Were you born in the United States?” If no, ask, “At what age did you come to the United States?” and “How long have you lived in the United States?” |
| Culture/country of origin | “Can you tell me what I need to know about your culture?” “What do you think is the cause of this illness?” “How would this illness be treated in your culture?” |
Adapted from Smith AK, Sudore RL, Perez-Stable EJ. Palliative care for Latino patients and their families: whenever we prayed, she wept. JAMA 2009;301:1047-57, E1.
Spiritual Issues
Spiritual needs figure prominently for many critically ill patients and their families, often explicitly or tacitly shaping decision making about medical care.75 Increased family satisfaction has been associated with assessment of spiritual needs.14 Exploring underlying spiritual beliefs and values can be extremely important in supporting families and toward finding common ground on medical decisions through shared decision making. In addressing spiritual concerns, clinicians should use caution in not stepping beyond one’s role as a clinician or trying to resolve existential and spiritual questions75; rather, the focus should be on assessing potential spiritual needs, then making referrals for spiritual care specialists as indicated. The FICA mnemonic (Table 214-5) gives clinicians a framework for assessing spiritual needs.76
| F | Faith and beliefs |
| I | Importance of spirituality in the patient’s life |
| C | Spiritual Community of support |
| A | How does the patient wish spiritual issues to be Addressed in his or her care? |
From Puchalski CM. Spirituality and end-of-life care: a time for listening and caring. J Palliat Med 2002;5:289-94.
SummaryLautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356:469-478.
Gerstel E, Engelberg RA, Koepsell T, Curtis JR. Duration of withdrawal of life support in the intensive care unit and association with family satisfaction. Am J Respir Crit Care Med. 2008;178:798-804.
Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835-843.
Evidence-based review offering pragmatic suggestions for leading effective family conferences.
Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166:493-497.
McDonagh JR, Elliott TB, Engelberg RA, Treece PD, Shannon SE, Rubenfeld GD, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32:1484-1488.
1 Cohen S, et al. Communication of end-of-life decisions in European intensive care units. Intensive Care Med. 2005;31(9):1215-1221.
2 Angus DC, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32(3):638-643.
3 Prendergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med. 1998;158(4):1163-1167.
4 Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med. 1997;155(1):15-20.
5 Lautrette A, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469-478.
6 Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16):2221-2226.
7 Carlet J, et al. Challenges in end-of-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003. Intensive Care Med. 2004;30(5):770-784.
8 Davidson JE, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35(2):605-622.
9 Heyland DK, et al. Decision-making in the ICU: perspectives of the substitute decision-maker. Intensive Care Med. 2003;29(1):75-82.
10 White DB, et al. Expanding the paradigm of the physician’s role in surrogate decision-making: an empirically derived framework. Crit Care Med. 2010;38(3):743-750.
11 Cochrane JJ, Goering PN, Rogers JM. The mental health of informal caregivers in Ontario: an epidemiological survey. Am J Public Health. 1997;87(12):2002-2007.
12 Pochard F, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29(10):1893-1897.
13 Azoulay E, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987-994.
14 Gries CJ, et al. Family member satisfaction with end-of-life decision making in the ICU. Chest. 2008;133(3):704-712.
15 Gerstel E, et al. Duration of withdrawal of life support in the intensive care unit and association with family satisfaction. Am J Respir Crit Care Med. 2008;178(8):798-804.
16 Luce JM. End-of-life decision-making in the intensive care unit. Am J Respir Crit Care Med. 2010;182:6-11.
17 Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. Chest. 2008;134(4):835-843.
18 Torke AM, Alexander GC, Lantos J. Substituted judgment: the limitations of autonomy in surrogate decision making. J Gen Intern Med. 2008;23(9):1514-1517.
19 Danis M, et al. Stability of choices about life-sustaining treatments. Ann Intern Med. 1994;120(7):567-573.
20 Weissman JS, et al. The stability of preferences for life-sustaining care among persons with AIDS in the Boston Health Study. Med Decis Making. 1999;19(1):16-26.
21 Wittink MN, et al. Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study. Arch Intern Med. 2008;168(19):2125-2130.
22 Pruchno RA, et al. Stability and change in patient preferences and spouse substituted judgments regarding dialysis continuation. J Gerontol B Psychol Sci Soc Sci. 2008;63(2):S81-S91.
23 Martin VC, Roberto KA. Assessing the stability of values and health care preferences of older adults: A long-term comparison. J Gerontol Nurs. 2006;32(11):23-31. quiz 32-3
24 Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493-497.
25 Marks MA, Arkes HR. Patient and surrogate disagreement in end-of-life decisions: can surrogates accurately predict patients’ preferences? Med Decis Making. 2008;28(4):524-531.
26 Moorman SM, Hauser RM, Carr D. Do older adults know their spouses’ end-of-life treatment preferences? Res Aging. 2009;31(4):463-491.
27 Covinsky KE, et al. Communication and decision-making in seriously ill patients: findings of the SUPPORT project. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc. 2000;48(5 Suppl):S187-S193.
28 Sulmasy DP, et al. How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. J Am Geriatr Soc. 2007;55(12):1981-1988.
29 Vig EK, et al. Beyond substituted judgment: How surrogates navigate end-of-life decision-making. J Am Geriatr Soc. 2006;54(11):1688-1693.
30 Boyd EA, et al. “It is not just what the doctor tells me:” Factors that influence surrogate decision-makers perceptions of prognosis. Crit Care Med. 2010. Epub ahead of print
31 Nelson JE, et al. End-of-life care for the critically ill: A national intensive care unit survey. Crit Care Med. 2006;34(10):2547-2553.
32 Tonelli MR. Pulling the plug on living wills. A critical analysis of advance directives. Chest. 1996;110(3):816-822.
33 Kavic SM, et al. The role of advance directives and family in end-of-life decisions in critical care units. Conn Med. 2003;67(9):531-534.
34 Tillyard AR. Ethics review: ‘Living wills’ and intensive care–an overview of the American experience. Crit Care. 2007;11(4):219.
35 Goodman MD, Tarnoff M, Slotman GJ. Effect of advance directives on the management of elderly critically ill patients. Crit Care Med. 1998;26(4):701-704.
36 Johnson RFJr, Baranowski-Birkmeier T, O’Donnell JB. Advance directives in the medical intensive care unit of a community teaching hospital. Chest. 1995;107(3):752-756.
37 Hodde NM, et al. Factors associated with nurse assessment of the quality of dying and death in the intensive care unit. Crit Care Med. 2004;32(8):1648-1653.
38 Glavan BJ, et al. Using the medical record to evaluate the quality of end-of-life care in the intensive care unit. Crit Care Med. 2008;36(4):1138-1146.
39 Wall RJ, et al. Family satisfaction in the ICU: differences between families of survivors and nonsurvivors. Chest. 2007;132(5):1425-1433.
40 Pochard F, et al. Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study. J Crit Care. 2005;20(1):90-96.
41 Fumis RR, Nishimoto IN, Deheinzelin D. Families’ interactions with physicians in the intensive care unit: the impact on family’s satisfaction. J Crit Care. 2008;23(3):281-286.
42 MLN Matters. Information for Medicare Fee-for-Service Health Care Professionals. http://www.cms.gov/MLNMattersArticles/downloads/MM5993.pdf, 2008. cited MM5993; Available from
43 Meier DE, Beresford L. Billing for palliative consultations a prerequisite for the field’s maturation. J Palliat Med. 2009;12(10):871-874.
44 Nelson JE, et al. In their own words: patients and families define high-quality palliative care in the intensive care unit. Crit Care Med. 2010;38(3):808-818.
45 Lilly CM, et al. An intensive communication intervention for the critically ill. Am J Med. 2000;109(6):469-475.
46 Curtis JR, Rubenfeld GD. Improving palliative care for patients in the intensive care unit. J Palliat Med. 2005;8(4):840-854.
47 McDonagh JR, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32(7):1484-1488.
48 Selph RB, et al. Empathy and life support decisions in intensive care units. J Gen Intern Med. 2008;23(9):1311-1317.
49 Back AL, et al. Approaching difficult communication tasks in oncology. CA Cancer J Clin. 2005;55(3):164-177.
50 Stapleton RD, et al. Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med. 2006;34(6):1679-1685.
51 Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med. 1998;158(21):2389-2395.
52 White DB, et al. Prognostication during physician-family discussions about limiting life support in intensive care units. Crit Care Med. 2007;35(2):442-448.
53 Fried TR, et al. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346(14):1061-1066.
54 Murphy DJ, et al. The influence of the probability of survival on patients’ preferences regarding cardiopulmonary resuscitation. N Engl J Med. 1994;330(8):545-549.
55 Evans LR, et al. Surrogate decision-makers’ perspectives on discussing prognosis in the face of uncertainty. Am J Respir Crit Care Med. 2009;179(1):48-53.
56 Paling J. Strategies to help patients understand risks. BMJ. 2003;327(7417):745-748.
57 White DB, et al. The language of prognostication in intensive care units. Med Decis Making. 2010;30(1):76-83.
58 Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med. 1996;334(24):1578-1582.
59 Nava S, et al. The influence of the media on COPD patients’ knowledge regarding cardiopulmonary resuscitation. Int J Chron Obstruct Pulmon Dis. 2008;3(2):295-300.
60 Downar J, Hawryluck L. What should we say when discussing “code status” and life support with a patient? A Delphi analysis. J Palliat Med. 2010;13(2):185-195.
61 Azoulay E, et al. Prevalence and factors of intensive care unit conflicts: the conflicus study. Am J Respir Crit Care Med. 2009;180(9):853-860.
62 Poncet MC, et al. Burnout syndrome in critical care nursing staff. Am J Respir Crit Care Med. 2007;175(7):698-704.
63 Embriaco N, et al. High level of burnout in intensivists: prevalence and associated factors. Am J Respir Crit Care Med. 2007;175(7):686-692.
64 Embriaco N, et al. Burnout syndrome among critical care healthcare workers. Curr Opin Crit Care. 2007;13(5):482-488.
65 Larrabee JH, et al. Predictors of patient satisfaction with inpatient hospital nursing care. Res Nurs Health. 2004;27(4):254-268.
66 Mitchell PH, et al. American Association of Critical-Care Nurses Demonstration Project: profile of excellence in critical care nursing. Heart Lung. 1989;18(3):219-237.
67 Curtis JR. Caring for patients with critical illness and their families: the value of the integrated clinical team. Respir Care. 2008;53(4):480-487.
68 Gade G, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliat Med. 2008;11(2):180-190.
69 Curtis JR, et al. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844-849.
70 Thornton JD, et al. Families with limited English proficiency receive less information and support in interpreted intensive care unit family conferences. Crit Care Med. 2009;37(1):89-95.
71 Pham K, et al. Alterations during medical interpretation of ICU family conferences that interfere with or enhance communication. Chest. 2008;134(1):109-116.
72 Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. JAMA. 2001;286(23):2993-3001.
73 Norris WM, et al. Communication about end-of-life care between language-discordant patients and clinicians: insights from medical interpreters. J Palliat Med. 2005;8(5):1016-1024.
74 Smith AK, Sudore RL, Perez-Stable EJ. Palliative care for Latino patients and their families: whenever we prayed, she wept. JAMA. 2009;301(10):1047-1057. E1
75 Lo B, et al. Discussing religious and spiritual issues at the end of life: a practical guide for physicians. JAMA. 2002;287(6):749-754.
76 Puchalski CM. Spirituality and end-of-life care: a time for listening and caring. J Palliat Med. 2002;5(2):289-294.
