This Society of Critical Care Medicine Task Force report provides an overview for clinicians interested in developing or improving a quality improvement program using a step-wise approach. Success depends not only on committed interdisciplinary work that is incremental and continuous but also on strong leadership. Further research is needed to refine the methods and identify the most cost-effective means of improving the quality of health care received by critically ill patients and their families.
Background/Objectives Advance Care Planning (ACP) allows patients to state preferences for their end of life care but these preferences are frequently ignored. Following a Patient-Centered ACP interview (PC-ACP), patients’ preferences were compared to care received at end of life. Design A randomized controlled trial was conducted with patients with Congestive Heart Failure or End-stage Renal Disease and their surrogates who were randomized to receive either PC-ACP or usual care. Setting Two centers in Wisconsin with associated clinics/dialysis units provided patients. Participants Of the 313 patients and their surrogates who completed entry data, 110 died. Intervention During PC-ACP the trained facilitator assessed the patient and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of patient treatment preferences, and assisted the surrogates in understanding the patient’s preferences and their role. Measurements Preferences were documented and then compared to the care received at end of life determined by surrogate interviews or medical charts. Results Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) but not significantly so cases where the patients could not get their wishes met about CPR than control (6/48). Significantly more experimental patients withdrew from dialysis than control. Conclusions Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision makers is needed to detect significance.
The PC-ACP can be an effective approach to advance care planning. Its specificity and relevance to patients' actual medical conditions (as exemplified by its plans for potential complications related to cardiac surgery) can lead to greater patient-surrogate congruence without increasing decisional conflict and anxiety.
Context Patients with life-limiting illnesses, and their families, struggle with complex treatment decisions as these patients approach the last few years of life. Surrogates often do not clearly understand the patient's goals for future medical treatments. Objectives To determine if a disease-specific planning process can improve surrogate understanding of such patient goals for future, medical treatments. Design, Setting, and Participants A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007 in 6 outpatient clinics of large community or university health systems in 3 Wisconsin cities. Subjects were patients with either chronic congestive heart failure or chronic renal disease and their surrogate decision makers. Participants had to be competent, English-speaking adults at least 18 years of age. Intervention Trained health professionals conducted a structured, patient-centered interview intended to promote informed decision making and to result in the completion of a document clarifying the goals of the patient with regard to four disease-specific health outcome situations and to the degree of decision-making latitude granted to the surrogate. Measurements Surrogate understanding of patient goals for care with regard to four expected, disease-specific outcomes situations and of the degree of surrogate latitude in decision making. Results Three hundred thirteen patient-surrogate pairs completed the study. As measured by Kappa (κ) scores and in all four situations and in the degree of latitude, intervention group surrogates demonstrated a significantly higher degree of understanding of patient goals than control group surrogates. Intervention group κ scores ranged from 0.61 to 0.78, while control group κ scores ranged from 0.07 to 0.28. Conclusion Surrogates in the intervention group had a significantly better understanding of patient goals and preferences than surrogates in the control group. This finding is the first step toward ensuring that patient goals for care are known and honored.
• Background Critical care nurses care for dying patients daily. The process of dying in an intensive care unit is complicated, and research on specific obstacles that impede delivery of end-of-life care and/or supportive behaviors that help in delivery of end-of-life care is limited. • Objective To measure critical care nurses’ perceptions of the intensity and frequency of occurrence of (1) obstacles to providing end-of-life care and (2) supportive behaviors that help in providing end-of-life care in the intensive care unit. • Methods An experimental, posttest-only, control-group design was used. A national, geographically dispersed, random sample of members of the American Association of Critical-Care Nurses was surveyed. • Results The response rate was 61.3%, 864 usable responses from 1409 eligible respondents. The highest scoring obstacles were frequent telephone calls from patients’ family members for information, patients’ families who did not understand the term lifesaving measures, and physicians disagreeing about the direction of a dying patient’s care. The highest scoring supportive behaviors were allowing patients’ family members adequate time alone with patients after death, providing peaceful and dignified bedside scenes after death, and teaching patients’ families how to act around a dying patient. • Conclusions The biggest obstacles to appropriate end-of-life care in the intensive care unit are behaviors of patients’ families that remove nurses from caring for patients, behaviors that prolong patients’ suffering or cause patients pain, and physicians’ disagreement about the plan of care.
Patient-centered care is valued in nursing. However, until recently, nurse-researchers have focused on testing the effects of standardized rather than patient-centered interventions (PCIs). The latter are those interventions that are altered to address selected patient characteristics (e.g., beliefs, habits, or goals). PCIs have been well received, and in some studies they have been associated with improved health outcomes. In this article we describe briefly the concept patient centered, summarize the development of research on PCIs, discuss kinds of PCIs, provide examples of PCIs and how they have been derived and implemented, and raise issues for theory and future research.
• Background Providing appropriate end-of-life care has become a primary concern of nurses and the public. The highly technological critical care environment may not facilitate such care. • Objective To collect suggestions from critical care nurses for improving end-of-life care in intensive care units. • Methods A geographically dispersed, random sample of 1409 members of the American Association of Critical-Care Nurses was sent a 72-item survey on perceptions of end-of life care. The survey included a request for suggestions on ways to improve end-of life care. • Results Of the 861 critical care nurses who responded to the survey, 485 offered 530 suggestions for improving end-of-life care. Providing a “good death” was the major theme; specific suggestions included ways to help ensure death with dignity and peace. Barriers to providing good deaths included nursing time constraints, staffing patterns, communication challenges, and treatment decisions that were based on physicians’ rather than patients’ needs. Suggestions for providing a good death included facilitating dying with dignity; not allowing patients to be alone while dying; managing patients’ pain and discomfort; knowing, and then following, patients’ wishes for end-of-life care; promoting earlier cessation of treatment or not initiating aggressive treatment at all; and communicating effectively as a health-care team. Educational initiatives for professionals and the public were also suggested. • Conclusions Implementation of specific suggestions provided by experienced critical care nurses might increase the quality of end-of-life care, facilitating a good death for intensive care patients.
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