Medical futility: predicting outcome of intensive care unit patients by nurses and doctors--a prospective comparative study

OBJECTIVE: First, to assess the pattern of the prediction of intensive care unit patients' outcome with regard to survival and quality of life by nurses and doctors and, second, to compare these predictions with the quality of life reported by the surviving patients. DESIGN: Prospective opinion survey of critical care providers; comparison with follow-up for survival, functional status, and quality of life. SETTING: Six-bed medical intensive care unit subunit of a 1,000-bed tertiary care, university hospital. PATIENTS: All patients older than 18 yrs, admitted to the medical intensive care unit for >24 hrs over a 1-yr period (December 1997 to November 1998). INTERVENTIONS: Daily judgment of eventual futility of medical interventions by nurses and doctors with respect to survival and future quality of life. Telephone interviews with discharged patients for quality of life and functional status 6 months after intensive care unit admission. MEASUREMENTS AND MAIN RESULTS: Data regarding 521 patients including 1,932 daily judgments by nurses and doctors were analyzed. Disagreement on at least one of the daily judgments by nurses and doctors was found in 21% of all patients and in 63% of the dying patients. The disagreements more frequently concerned quality of life than survival. The higher the Simplified Acute Physiology Score and the longer the intensive care unit stay, the more divergent judgments were observed (p <.001). In surviving and dying patients, nurses gave more pessimistic judgment and considered withdrawal more often than did doctors (p <.001). Patients only rarely indicated bad quality of life (6%) and severe physical disability (2%) 6 months after intensive care unit admission. Compared with patients' own assessment, neither nurses nor doctors correctly predicted quality of life; false pessimistic and false optimistic appreciation was given. CONCLUSIONS: Disagreement between nurses and doctors was frequent with respect to their judgment of futility of medical interventions. Disagreements most often concerned the most severely ill patients. Nurses, being more pessimistic in general, were more often correct than doctors in the judgment of dying patients but proposed treatment withdrawal in some very sick patients who survived. Future quality of life cannot reliably be predicted either by doctors or by nurses.     

Optimism, satisfaction with needs met, interpersonal perceptions of the healthcare team, and emotional distress in patients' family members during critical care hospitalization.

BACKGROUND: Families of critical care patients experience high levels of emotional distress. Access to information about patients' medical conditions and quality relationships with healthcare staff are high-priority needs for these families. OBJECTIVES: To assess satisfaction with needs met, signs and symptoms of acute stress disorder, interpersonal perception of healthcare staff, level of optimism, and the relationships among these variables in patients' family members. METHODS: Family representatives of 40 patients were administered a brief version of the Critical Care Family Needs Inventory, the Acute Stress Disorder Scale, the Brief Symptom Inventory, the Impact Message Inventory, and the Life Orientation Test shortly after admission of the patients to the intensive care unit and after discharge. RESULTS: Levels of dissociative symptoms associated with acute stress disorder were elevated in family members just after admission but decreased significantly after discharge. Needs the families thought were least satisfactorily cared for after admission involved lack of information. Interpersonally, attending physicians were viewed as more controlling than bedside nurses at admission; nurses were viewed as more affiliative than physicians both at admission and after discharge. At admission, higher optimism of the family members was strongly related to greater satisfaction with needs met, to perceptions of affiliation from physicians, and to perceptions of not being controlled by physicians. CONCLUSIONS: More interpersonal contact with medical staff can help meet the information needs of patients' families. Nurses may aid in families' adjustment by fostering a sense of optimism in family members and encouraging them to participate in the patients' care.     

Providing end-of-life care to patients: critical care nurses' perceived obstacles and supportive behaviors.

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.     

Crisis intervention: a care plan for families of hospitalized children

Hospitalization of a child following a traumatic injury often precipitates a crisis for the patient's entire family. Although pediatric intensive care unit (PICU) nurses are in key positions to assist these families, time constraints, in addition to inadequate staff education regarding family assessment and counseling, often lead to the family being overlooked. Nurses need a quick and accurate method for assessing and intervening with families in crisis.     

Quality of life in cancer care: patients' experiences and nurses' contribution.

People with cancer experience great changes in their lives. Disease, treatment and prognosis affect their quality of life. The aim of this literature review was to ascertain how the illness affects patients' quality of life and to what extent nurses can influence or improve this experience. Twenty-two research articles were reviewed, the majority of which were qualitative in nature, studies that allow patients to portray their experiences in their own words. The concept of quality of life was defined as consisting of well-being in four core domains, psychological, social, physical and spiritual. It was found that patients' quality of life is affected in all four core domains and that these domains are overlapping and interdependent. The qualitative data also highlighted that each patient's experience is unique to that patient. Nurses have to be aware of this and remain sensitive to the individual patient's needs. Few of the articles reviewed examined nursing care from the patient's point of view. Tentative conclusions were that nurses can improve patients' quality of life by ensuring they are competent in daily practice, by giving patients a feeling of security and by treating them with respect as individuals and human beings.     

Impact of a prolonged surgical critical illness on patients' families.

BACKGROUND: Long-term effects on patients' families after a prolonged stay in a surgical intensive care unit are unclear. We hypothesized that illnesses requiring more than 7 days' stay in the surgical intensive care unit would have significant, long-lasting effects on patients' families that would be related to patients' functional outcome. METHODS: All patients who stayed in the general surgery intensive care unit 7 days or more between July 1, 1996, and June 30, 1997, were enrolled. A total of 128 patients met the entry criteria, and families of surviving patients were interviewed at baseline and 1, 3, 6, and 12 months later. Maximum dysfunction/impact was compared with patients' functional outcome. RESULTS: Significant disturbances in the families' lives occurred throughout the 12 months of this study. Almost 60% of responding families provided a moderate or large amount of caregiving between 1 and 9 months after a prolonged illness, 44.9% had to quit work after 1 month, and more than 36.7% of families had lost savings after 1 year. Some families moved to a less expensive home, delayed educational plans, or delayed medical care for another family member. CONCLUSIONS: An acute surgical illness that results in a prolonged stay in an intensive care unit has a substantial effect on patients' families that is maximal between 1 and 3 months and parallels the patient's functional outcome. Systems that provide support to both patients and their families should be emphasized in the hospital and after discharge.     

Families, nurses and intensive care patients: a review of the literature

1. Nurses striving to give holistic care to provide quality care for their patients, need to recognize the importance of caring for patients' families. 2. A detailed review of the literature examining the relationships between nurses and intensive care patients' families was undertaken to examine its strengths and weaknesses as a basis for further study. 3. Studies show that although nurses are often in the best position to meet families' needs, their needs are not always met. 4. The building of good relationships with families is essential for nurses, and yet evidence shows that some nurses have difficulties in this area. 5. Good practice is identified and obstacles nurses face in forming relationships with families are explored. 6. Strategies for improving the interaction process between intensive care nurses and patients' families are systematically evaluated.     

Performance obstacles of intensive care nurses

BACKGROUND: The work environment of intensive care nurses may have substantial impact on both nursing outcomes and patient safety. The factors in a nurse's immediate work environment, in the local work context, have not been studied in detail to provide useful, specific information for work redesign efforts to improve nurse's work and patient safety. Performance obstacles are the factors that hinder intensive care nurses' capacity to perform their jobs and that are associated closely with their immediate work environment. OBJECTIVES: To identify the performance obstacles experienced by intensive care nurses in their work environment. METHODS: A multisite, cross-sectional study was conducted. Data were collected using a 36-item questionnaire and analyzed using univariate statistical analysis. The frequencies of performance obstacles reported by intensive care nurses were computed. RESULTS: Nurses (n = 272) from 17 intensive care units (ICUs) of seven hospitals in Wisconsin participated in the study. The most frequently experienced performance obstacles included noisy work environment (46%), distractions from families (42%), hectic (40%) and crowded work environments (37%), delay in getting medications from pharmacy (36%), spending considerable amount of time teaching families (34%), equipment not being available-someone else using it (32%), patient rooms not well-stocked (32%), insufficient workspace for completing paperwork (26%), seeking for supplies (24%) or patients' charts (23%), receiving many phone calls from families (23%), delay in seeing new medical orders (21%), and misplaced equipment (20%). DISCUSSION: Intensive care nurses experience a variety of performance obstacles in their work environment. Future research should investigate the impact of various performance obstacles on nursing workload, nursing quality of working life, and quality and safety of care, as well as the impact of interventions aimed at redesigning the work system of ICU nurses to remove performance obstacles.     

Assessment of resident performance in a hospital-based palliative care unit

Abstract

Nurses and medical residents in the University of Massachusetts Medical Center were asked to evaluate the performance of the residents in the University Hospital's 10-bed hospice using nine criteria. Thirty-one residents (18 interns and 13 third year residents) and 16 nurses responded. Nurses evaluated resident performance with respect to most criteria lower than residents evaluated themselves. Some of the findings were significant. A finding on which all agreed was that house staff had the greatest difficulty knowing when to stop medical treatment on terminally ill patients. Comments from both residents and nurses showed that the rotation provided an important and unique learning experience despite attendant distress for residents. In addition, nurses, whò had been unenthusiastic about resident presence previously, now valued these physicians' contributions to patient care and would not choose to return to the pre-house staff days.     

Providing a "good death": critical care nurses' suggestions for improving end-of-life care.

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.     

The shift to early palliative care: a typology of illness journeys and the role of nursing

For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care.     

Nurses’ perceptions of dealing with death in the emergency department

BackgroundProviding end-of-life care to patients and their families in the emergency department (ED) is challenging, with high workloads, the busy environment, and a focus on providing lifesaving treatments to patients at odds with providing end-of-life and palliative care.AimThe purpose of this study was to investigate nurses’ experiences of providing end-of-life care in EDs, including their perceptions of the most vital elements of care, ability to provide aspects of care, as well as perceptions of their role, communication processes, family presence/involvement, and the ED environment.MethodsNurses (n = 211) working in Australian EDs for at least 12 months completed an anonymous online survey.FindingsNurses identified vital elements of care for dying patients including adequate pain control and a move away from burdensome treatments, sensitive care of families and family access to loved ones, and a quiet environment. However, nurses were not always able to provide such care to their patients. Often, the ED was seen as an unsuitable place for end-of-life care or care of families once the patient had died, and communication between staff and between staff and families was challenging.DiscussionThe ED physical environment, lack of staff training and debriefing, and lack of time to communicate with family, particularly after death, may compromise nurses’ ability to provide end-of-life care that is satisfying to them, their patients, and families.ConclusionThere is a need for focus on the ED physical environment, staff training, and consideration of the emotional experiences of frontline nurses caring for patients at the end of life.     

Intensive care nurses' experiences with end-of-life care.

BACKGROUND: With much attention being focused on how patients die and whether or not they are provided appropriate care, the care of dying patients in intensive care units must be described and improved. OBJECTIVES: To describe end-of-life care in intensive care units as perceived by critical care nurses who have taken care of dying patients. METHODS: A semistructured interview guide was developed and revised after pretesting in a focus group of faculty clinicians with extensive, recent experience in intensive care. Four focus groups were held with randomly selected nurses from 4 intensive care units in 2 hospitals; participants had 2 years or more of experience and were working half-time or more. Tapes from each focus group were transcribed and reviewed by the investigators before the subsequent group met. Category labels were developed, and topics and themes were determined. RESULTS: "Good" end-of-life care in the intensive care unit was described as ensuring that the patient is as pain-free as possible and that the patient's comfort and dignity are maintained. Involvement of the patient's family is crucial. A clear, accurate prognosis and continuity of care also are important. Switching from curative care to comfort care is awkward. CONCLUSIONS: Disagreement among patients' family members or among caregivers, uncertainty about prognosis, and communication problems further complicate end-of-life care in intensive care units. Changes in the physical environment, education about end-of-life care, staff support, and better communication would improve care of dying patients and their families.     

A qualitative study of clinical nurse specialists' views on depression in palliative care patients

Depression is the most common psychiatric illness in patients with terminal cancer. Depression not only lowers the quality of life for the patients and their families, but patients who are depressed may also have physical symptoms that are difficult to palliate and that improve as their depression is appropriately treated. However, up to 80% of the psychological and psychiatric morbidity that develops in cancer patients goes unrecognized and untreated and patients are often reluctant to spontaneously discuss symptoms with medical and nursing staff. In the UK, palliative care clinical nurse specialists have a key role in the assessment of symptoms and advising on management in patients with advanced metastatic cancer. A qualitative study was carried out to determine how specialist palliative care nurses, working both in the community and within a hospital, perceive, assess and manage depression in their patients. Seventeen nurses were interviewed. Nurses found it difficult to discuss depression with their patients and tended to focus on physical symptoms. The lack of training in identifying psychological and psychiatric symptoms was a source of concern to nurses as was the difficulties they encountered in trying to persuade medical staff that patients required further assessment or antidepressant medication. Nurses also felt that psychiatric expertise was not utilized as fully as it could be. The findings of this study have implications for the training and support of nurse specialists in the psychological and psychiatric assessment and management of palliative care patients.     

Nurses' participation in the end-of-life process in two paediatric intensive care units in Brazil

The aim of this study was to evaluate the medical and nursing care provided to children in the last 24 hours of life in two Brazilian paediatric intensive care units and analyse the nurses' participation in the decision-making process for life support limitation (LSL). The study was based on an analysis of the patients' medical charts, looking at the medical and nursing care provided in the last 24 hours of life during a 6-month period in the two units, and on semi-structured interviews with 20 nurses to evaluate their participation in LSL decisions. The children were classified into two groups: those who were to receive full cardiopulmonary resuscitation (CPR) and a non-CPR group. A total of 34 deaths occurred during the study period. Of these, 17 (50%) were children that had been in the non-CPR group; there were only 10 recorded LSL plans in their medical charts. In the interviews, only 30% of the nurses mentioned active participation in LSL decisions. In conclusion, the paediatric intensive care nurses in these two Brazilian units did not participate much in LSL decisions, and the care offered in the last hours of life to children with terminal and irreversible illness was not primarily directed toward comfort and alleviating suffering.     

The vortex: families' experiences with death in the intensive care unit.

BACKGROUND: Lack of communication from healthcare providers contributes to the anxiety and distress reported by patients' families after a patient's death in the intensive care unit. OBJECTIVE: To obtain a detailed picture of the experiences offamily members during the hospitalization and death of a loved one in the intensive care unit. METHODS: A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate. RESULTS: The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members' best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients' condition and reactions. Although some participants were satisfied with this information, they wishedfor more detailed explanations ofprocedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, andfamily decisions honored. CONCLUSIONS: Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient s suffering pervade families' end-of-life experiences in the intensive care unit. Families' information about the patient is often lacking or inadequate. The best antidote for families' uncertainty is effective communication.     

A multicase study of prolonged critical illness in the intensive care unit: Families’ experiences

BackgroundIt is widely acknowledged a critical illness is a stressful life event for not only the patient but also their family members; when an illness becomes prolonged, the impact is profound. It is suggested that as medical technologies advance, the number of days patients stay in an intensive care unit will increase. Therefore, it is important nurses understand how families experience a prolonged critical illness of their family member in an intensive care unit.ObjectiveTo explore the trajectory of a prolonged critical illness in the intensive care unit from the experiences of family.MethodsA qualitative, longitudinal, multi-case design consisting of six cases from New Zealand intensive care units. Findings presented in this article only relate to the family’s experiences, although patients and healthcare professionals formed part of each case. Data collection methods included observation, conversations, interviews and document review. Analysis was undertaken using thematic analysis, vignette development and trajectory mapping.FindingsRelentless uncertainty dominated all phases of the trajectory for the family during a family member’s prolonged critical illness in the intensive care unit. When faced with a critical illness, family shifted rapidly into a world of unknowns. Family worked hard to navigate their way through the many uncertainties that dominated each phase of their family member’s illness.ConclusionsNurses need to understand the levels of uncertainty families endure in order to provide care that meets the philosophical underpinnings of family centred care.