Annotated Bibliography from 2000-2001


END-OF-LIFE CARE

Judith E. Nelson, MD, JD
Critical Care Workgroup Member
Mount Sinai School of Medicine


Curtis JR, Rubenfeld GD, eds. Managing death in the intensive care unit. Oxford: Oxford University Press, 2001.

Death continues to be common in intensive care units, posing special clinical and emotional challenges for professional caregivers. This landmark volume, the first textbook devoted to care of patients dying in the ICU, is an indispensable resource for clinicians and others. An impressive array of contributors are represented in well-referenced chapters on diverse, important topics, which expert editors have brought together in a comprehensive, coherent, organized, and accessible way. Together with text that is uniformly clear, excellent tables and figures serve to summarize the state of the art in this important area of practice and ongoing research.

Truog RD, Cist AFM, Brackett SE, et al. Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 2001; 29:2332-2348.

As summarized in the abstracts of data-based articles set forth below, research using quantitative and qualitative methods is solidifying the evidentiary foundation for clinical care of patients dying with pulmonary disease and critical illness. These recommendations are based on existing empirical data and consensus of expert opinion. They are "written from the emerging perspective that palliative care and intensive care are not mutually exclusive options but rather should be coexistent." The recommendations are comprehensive, compassionate, and well-referenced to the expanding literature in this field.


Patient/Family Experience

Claessens MT, Lynn J, Zhong Z et al. Dying with lung cancer or chronic obstructive pulmonary disease: Insights from SUPPORT. J Am Geriatr Soc 2000; 48:S146-S153. Somogyi-Zalud E, Zhong Z, Lynn J, Dawson NV, Hamel MB, Desbiens NA. Dying with acute respiratory failure or multiple organ system failure with sepsis. J Am Geriatr Soc 2000; 48:S140-S145.

These are two reports of data prospectively collected during the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a large and important study addressing care provided to seriously ill, hospitalized adults in nine disease categories at five academic medical centers. Overall, findings from SUPPORT suggested that physician-patient/surrogate communication was limited and that patient suffering at the end of life was significant. These reports focused specifically on patients with Stage III or IV non-small cell lung cancer (n = 939), acute exacerbation of severe chronic obstructive pulmonary disease (n = 1008), acute respiratory failure (n = 1805), or multiple organ failure with sepsis (n = 1151). Mortality during the index hospitalization was 12% for lung cancer patients, 11% for those with COPD, and 44% for the ARF/MOSF cohort; 6-month mortality was 64% and 32% for the cancer and COPD groups respectively, while 1-year mortality for the ARF/MOSF group was 58%. As assessed during the second week of hospitalization by interviews of patients or surrogates (with highest rates of surrogate substitution for symptom reports among patients with ARF/MOSF), severe pain and dyspnea were prevalent at the end of life in all cohorts. The majority of patients with lung cancer or COPD expressed a preference for care focusing on comfort rather than life prolongation. Among patients with ARF/MOSF, more than 80% who died during the hospitalization rated their chance of survival as 75-90%, and over 50% expressed a preference to die rather than survive with ventilator dependence. Nearly half of families of patients with ARF/MOSF experienced adverse effects, with frequent reports of major financial losses even though the vast majority of patients had medical insurance.

Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000; 55:1000-1006.

This study explored differences in palliative care and quality of life between two among the largest groups treated by pulmonary physicians, patients with chronic obstructive pulmonary disease and those with lung cancer, using multiple methods including administration of validated health-related quality-of-life assessment tools, semi-structured qualitative interviews, and abstraction of medical records. Study patients (n = 50 in each disease cohort) had advanced disease. Approximately one-third of patients in each cohort reported their perception that diagnostic information had been lacking or given insensitively, and approximately 80% thought that information about prognosis or future management was inadequate. Whereas approximately one-third of cancer patients received palliative care services and more were aware of their availability, no COPD patient received or was offered comparable services, and assessment of COPD patients for distressing symptoms was less frequent. Scores on anxiety and depression scales and overall health-related quality of life were worse for patients with COPD than those with lung cancer. This interesting study indicates that both groups with advanced respiratory disease experienced distressing symptoms, deficient communication, and impaired function, with compromise of quality of life, but that patients with severe COPD fared worse, apparently because their needs were less often recognized or met in the absence of expert palliative care.

Nelson JE, Meier DE, Oei EJ et al. Self-reported symptom experience of critically ill cancer patients receiving intensive care. Crit Care Med 2001; 29:277-282.

Whereas previous symptom research relied on survivor recollections or surrogate reports, which may be biased, this study systematically evaluated symptoms self-reported in real time by critically ill cancer patients treated in a medical intensive care unit. The study enrolled 100 consecutive patients, among whom 50 had capacity to provide reports of a brief but diverse list of physical and psychological symptoms modified from the Edmonton Symptom Assessment Scale; responses were given by all patients able to respond, including 60% receiving mechanical ventilation and more than one-third who died during the hospitalization. Between 55% and 75% of patients reported pain, discomfort, anxiety, sleep disturbance, or unsatisfied hunger or thirst they rated as moderate or severe. Depression and dyspnea at these levels were reported by approximately 40% and 33% of responders, respectively. In addition, patients reported significant pain, discomfort or both in association with common ICU procedures, including mechanical ventilation, the presence of an endotracheal tube or indwelling urethral catheter, endotracheal suctioning, and insertion of central and peripheral venous catheters and nasogastric tubes. Among procedures rated as most painful or uncomfortable were also noninvasive interventions, such as turning and moving from bed to chair, a finding confirmed in the large-scale Thunder Project II conducted by the American Association of Critical Care Nurses (Puntillo KA et al., Am J Crit Care 2001;10:238-251). The study indicates that many ICU patients, even those with grave illness, can self-report symptoms, and that among patients with capacity to provide symptom reports, multiple distressing symptoms are common at high levels of severity.

Pochard F, Azoulay E, Chevret S 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; 29:1893-1897.

This prospective, multicenter study established that anxiety and depression are common among families of ICU patients. Over eight hundred family members of 637 patients in 43 French ICUs completed the self-administered Hospital Anxiety and Depression Scale questionnaire. In multivariate analysis, several factors were found to be independently associated with anxiety or depression, including acute disease in the absence of chronic illness of the patient, absence of regular meetings between medical and nursing staff to discuss patient and family needs, absence of a room dedicated for family meetings, and contradictions in information given by clinicians to families. The investigators suggested that anxiety and depression may impair the ability of family members to make rational, appropriate, and ethically acceptable end-of-life decisions for patients, who generally lack capacity to make their own decisions during critical illness, but that factors related to caregivers and care settings may be amenable to change that would reduce these distressing psychological symptoms.

Communication

Azoulay E, Chevret S, Leleu G et al. Half the families of ICU patients experience inadequate communication with physicians. Crit Care Med 2000; 8:3044-3049.

Inadequate communication with and comprehension by families of critically ill patients are documented in this study conducted in the medical ICU of a French teaching hospital. As revealed in interviews, more than 50% of relatives/other surrogates of 76 patients (ICU mortality rate of 30%) failed to understand basic information about diagnosis (the primary organ involved), prognosis (whether the illness was grave/expected to result in death), or treatment of the patient (at least one from a list of major treatments including mechanical ventilation, dialysis, and antibiotics). Various factors were associated with poor comprehension, including caregivers' perceptions that comprehension was poor, leaving open the issue of whether clinicians did not or could not take steps to improve comprehension, or did so without success.

Teno JM, Fisher E, Hamel MB et al. Decision-making and outcomes of prolonged ICU stays in seriously ill patients. J Am Geriatr Soc 2000; 48:S70-S74.

Further evidence of deficiencies in communication with critically ill patients and their families is found in this report analyzing data from the SUPPORT study with respect to patients who spent >14 days in an ICU. Even in this group with serious illness and prolonged ICU stays, a substantial majority had not discussed their prognosis or preferences for life-sustaining treatment with a physician. Almost 50% of patients who expressed a preference for palliative care (defined for this purpose as "care that focuses on relieving pain and discomfort as much as possible, even if that means not living as long") believed that the treatment they received was contrary to this preferred approprach, and approximately 25% did not know what approach to care was being taken by the medical team. In the absence of communication with physicians, patients were more likely to receive care thought to conflict with their preferences.

Cook DJ, Guyatt G, Rocker G et al. Cardiopulmonary resuscitation directives on admission to intensive care unit: an international observational study. Lancet 2001; 358:1941-45.

In the absence of an explicit advance directive, the "default" implicit directive is to perform cardiopulmonary resuscitation. This large-scale, observational study conducted in 15 intensive care units in four countries demonstrated that explicit advance directives continue to be uncommon during the first 24 hours in the ICU, but that half of these directives expressed a preference against resuscitation. The study enrolled almost 3000 patients consecutively admitted to closed ICUs in university-affiliated teaching hospitals, among whom 44% were unable to participate in decision-making during the first 24 hours in the ICU. Only 11% of patients across the study sites had an explicit resuscitation directive during this period; almost half of these directives were established by residents, who were more likely than attending physicians to establish directives to resuscitate than not to resuscitate. Among patients with explicit directives, the directive was do-not-resuscitate for 50%. Substantial variation was observed among countries, cities within countries, and individual centers within cities. Increasing age was not associated with greater likelihood of having an explicit directive, but did predict a directive against resuscitation among those with directives. Explicit directives were more likely for patients admitted to ICUs at night and on weekends. This rigorous observational study suggests that implicit directives may not reflect true preferences of patients, that earlier and more effective communication may help to promote concordance between patients' preferences and their treatment, and that practices in end-of-life care of critically ill patients remain variable and influenced by factors other than the patient's clinical status.

Lilly CM, De Meo DL, Sonna LA et al. An intensive communication intervention for the critically ill. Am J Med 2000; 109:469-475.

This was a before-and-after, interventional study in the medical ICU of a university tertiary care hospital comparing "usual care" with a "proactive process of communication" in which a formal, multidisciplinary meeting with the patient/family was held within 72 hours of ICU admission. Objectives of the meeting were to review treatment options, discuss the patient's perspectives on end-of-life care, agree on a care plan, and establish "clinical milestones" to establish the effectiveness of that plan. Follow-up meetings were held for patients failing treatment to explore palliative care options. In addition, a weekly case review was conducted with representation from multiple disciplines, including critical care attending physicians. The study involved 134 and 396 consecutive patients in the pre-intervention and intervention groups respectively. In the pre-intervention period, family meetings involving attending physicians were held for less than half (43%) of patients. This proportion increased significantly to 68% during the period of the intensive communication intervention. The intervention was also found to reduce median length of ICU stay and "nonconsensus" with respect to dispositional goals.

Perspectives on Care at the End-of-Life

Puntillo KA, Benner P, Drought T, Drew B, Stotts N, Stannard D, Rushton C, Scanlon C, White C. End-of-life issues in intensive care units: A national random survey of nurses' knowledge and beliefs. Am J Crit Care 2001; 10:216-229.

This study involved a mail survey of a stratified random sample of members of the American Association of Critical-Care Nurses to investigate nurses' knowledge, beliefs, and ethical concerns with respect to care of patient dying in intensive care units. The questionnaire used hypothetical clinical scenarios to explore the areas of pain management, withholding or withdrawing life support, assisted suicide, and euthanasia. Among 3000 nurses in the sample, 906 (30%) returned completed questionnaires. Most respondents thought that dying patients received inadequate analgesia. More than 80% disagreed with assisted suicide, and 95% opposed euthanasia, while almost all approved of forgoing life-supporting treatment in appropriate circumstances. Approximately one-third of the nurses indicated they had acted against their conscience in caring for dying patients, apparently in situations where treatments they considered futile were continued. Communication between physicians and nurses was generally thought to be effective, but many respondents identified an unmet need for grief counseling and staff debriefing activities. Because nurses provide most bedside care at the end-of-life, it is especially important for physician and other members of the critical care team to understand nursing perspectives, as revealed in studies such as this.

Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000; 132:825-832.

This is an important, qualitative study that used focus groups and in-depth interviews of patients, families, and health and pastoral care professionals involved in end-of-life care to identify attributes of a "good death." Participants discussed their experiences with deaths of family members, friends, or patients, reflecting on what made those deaths good or bad. Data analysis used a grounded theory approach, with open and axial coding of transcripts of group meetings and individual interviews. Six themes emerged as attributes of a good death in discussions involving a wide spectrum of participants: symptom control, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. Participants particularly feared dying in pain, but stated that apprehensions could be reduced through communication and clear, shared decision making, with the expectation of aggressive symptom management. Both patients and families expressed a need for information about the expected course of the illness, including both physical and psychosocial changes, allowing better preparation for the dying process. Participants affirmed the importance of empathic health care providers and of achieving a sense of completion, including resolving conflicts and saying good-bye, and contributing to the well-being of others as possible in the context of the illness. Professional roles influenced views more strongly than gender or ethnic differences. Physicians' discussions differed from those of other groups, reflecting greatest attention to "biomedical"/ physiologic aspects of death, whereas other groups had a broader view, according equal importance to psychosocial and spiritual issues. The investigators "heard many stories of health care providers' discomfort with death and dying," thought to be attributable to factors including feelings of failure, a desire for professional distance, and inexperience. Rigorous qualitative research, as reflected in this study, is valuable for hypothesis generation and detailed description of important phenomena, such as perceptions of the quality of death.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.