A critical discourse analysis of provision of end-of-life care in key UK critical care documents

This article highlights certain practical and professional difficulties in providing end-of-life (EOL) care for patients in critical care units and explores discourses arising from guidelines for critical care services. BACKGROUND: A significant number of patients die in critical care after decisions to withdraw or withhold treatment. Guidelines for provision of critical care suggest, wherever possible, moving patients out of critical care at the EOL. This may not necessarily be conducive to a 'good death' for patients or their loved ones. There is a moral responsibility for both nurses and doctors to ensure that decision-making around EOL issues is sensitively implemented, that decisions about care includes families, patients when able, nurses and doctors, and that good EOL care is provided. METHODS: A critical discourse analysis (CDA) of four key UK critical care documents published since 1996. FINDINGS AND RECOMMENDATIONS: The key documents give little clear guidance about how to provide EOL care in critical care. Discourses include the power dynamic in critical care between professions, families and patients, and how this impacts on provision of EOL care. Difficulties encountered include dilemmas at discharge and paternalism in decision-making. The technological environment can act as a barrier to good EOL care, and critical care nurses are at risk of assuming the dominant medical model of care. Nurses, however, are in a prime position to ensure that decision-making is an inclusive process, patient needs are paramount, the practical aspects of withdrawal lead to a smooth transition in goals of care and that comfort measures are implemented.     

Analysis of end-of-life content in critical care nursing textbooks

Nurses have identified a need for improving their knowledge and skills in providing end-of-life care. Critical care nursing textbooks can serve as an important source of information on end-of-life care for critical care nurses. Hence, an analysis of end-of-life content in 14 critical care nursing textbooks was conducted. Critical care nursing textbooks used for review were published in 1995 or later and identified from the libraries at the University of Wisconsin-Madison and Brigham Young University. The end-of-life content areas identified by the American Association of Colleges of Nursing (AACN), under which the AACN end-of-life competencies for undergraduate nursing students can be taught, were used as a framework for assessing the presence or absence of end-of-life content in the textbooks. When end-of-life content was present, two reviewers judged whether the information was helpful. Four additional end-of-life content areas were identified in some textbooks during the study, and reviewers also judged whether these were helpful. None of the textbooks had end-of-life content in all the content areas used for the analysis. Three textbooks did not contain any end-of-life content.     

Contradictions and communication strategies during end-of-life decision making in the intensive care unit

PURPOSE: The aim of this study was to identify inherent tensions that arose during family conferences in the intensive care unit, and the communication strategies clinicians used in response. MATERIALS AND METHODS: We identified 51 clinician-family conferences in the intensive care unit from 4 hospitals in which the attending physician believed discussion of withdrawing life-sustaining treatments or delivery of bad news would occur. The communication between clinicians and family members was analyzed using a dialectic perspective. RESULTS: The tension of choosing whether to "let the patient die now" versus to "not let the patient die now" was the central contradiction within the conferences. Under this overriding theme were 5 categories: killing or allowing to die; death as a benefit or a burden; honoring the patient's wishes or following the family's wishes; weighing contradictory versions of the patient's wishes; and choosing an individual family member as decision maker or the family as a unit as decision maker. In response to these contradictions, clinicians used 2 clusters of communication strategies: decision-centered strategies and information-seeking strategies. CONCLUSIONS: This study offered insights into end-of-life decision making, prompting clinicians to be conscious of the contradictions that arise and to use specific strategies to address these contradictions in their communication with families.     

Off-label medication use in adult critical care patients

Purpose

This study evaluated the use of off-label medications in the intensive care unit (ICU) setting and their varying levels of evidence.

Materials and Methods

Thirty-seven ICUs from 24 US sites participated in this prospective, multicenter, observational study during a single 24-hour period. All medication orders were evaluated for Food and Drug Administration-labeled indications, strength of evidence, and strength of recommendation. Off-label medication orders were evaluated for indication, dose, route of administration, duration of therapy, and whether they were supported by institutional guidelines.

Results

A total of 414 patients were enrolled, yielding 5237 medication orders for analysis. Of these, 1897 orders (36.2%) were off-label. The 3 drug classes that accounted for the most off-label orders were bronchorespiratory, gastrointestinal, and immunology. The majority of off-label medication orders (89.1%) were initiated after patient admission to the ICU. Nine hundred twenty-eight (48.3%) of the off-label medication orders had grade C or no evidence.

Conclusions

The use of off-label medication therapies in the US adult critical care units is common, a majority of which are initiated after admission to the ICU and a significant portion of which are supported with inferior levels of evidence.     

“Time and life is fragile”: An integrative review of nurses’ experiences after patient death in adult critical care

IntroductionProviding bereavement support and care to families is an aspect of critical care nursing practice that can be rewarding, yet emotionally and psychologically challenging. Whilst significant research has focused on end-of-life care in critical care, less is known about nurses’ experiences after patient death.AimThe aim of this study was to synthesise research evidence on the experience of registered nurses after patient death in adult critical care.DesignA structured integrative review of the empirical literature was undertaken. A combination of keywords, synonyms, and Medical Subject Headings were used across the Cumulative Index Nursing and Allied Health Literature (CINAHL) Complete, Ovid Medline, PsycInfo, Embase, and Emcare databases. Records were independently assessed against inclusion and exclusion criteria. A process of forward and backward chaining was used to identify additional papers. All papers were assessed for quality. Narrative synthesis was used to analyse and present the findings.ResultsFrom the 4643 records eligible for screening, 36 papers reporting 35 studies were included in this review, representing the voices of 1687 nurses from more than 20 countries. Narrative synthesis revealed three themes: (i) postmortem care, which encompassed demonstrating respect and dignity for the deceased, preparation of the deceased, and the concurrent death rituals performed by nurses; (ii) critical care nurses' support of bereaved families, including families of potential organ donors and the system pressures that impeded family support; and (iii) nurses’ emotional response to patient death including coping mechanisms.ConclusionsWhilst a focus on the provision of high-quality end-of-life care should always remain a priority in critical care nursing, recognising the importance of after-death care for the patient, family and self is equally important. Acknowledging their experience, access to formal education and experiential learning and formal and informal supports to aid self-care are imperative.     

Family involvement in end-of-life care in a paediatric intensive care unit

End-of-life care (ELC) on a paediatric intensive care unit (PICU) is a fundamental aspect of clinical practice and yet often remains a highly emotive and challenging issue. Every year, many children die in PICU often following the withdrawal of life-sustaining treatment, and as health professionals we have a duty to provide ELC that meets the needs of the dying child and their family. To achieve this, there is a growing emphasis on incorporating parental views on withdrawal of intensive care especially in time and place. Home care of the dying child enables the child to die at home in familiar surroundings and with the people who love them the most. This service is essentially child centred and acknowledges the unique and pivotal position that parents have in their child's life by empowering them to have control over the time and place of death. This is a vitally important aspect of end-of-life in PICU and underpins the ethos of this area of practice. We present a series of case reviews of patients cared for within a 12-month period, where intensive care was withdrawn distant from the PICU environment and address the challenges and considerations surrounding this area of practice.     

Development of the nursing practice scale for end-of-life family conferences in critical care

ObjectivesThis study aimed to develop the Nursing Practice Scale for End-of-life Family conferences in critical care and to clarify the current status of nursing practice regarding family conferences.Research methodology/designWe conducted a cross-sectional, self-administered questionnaire survey with 955 critical care unit nurses in 97 hospitals. Content validity, factor validity and criterion-related validity, known-group validity, internal consistency and test–retest reliability were evaluated. Data were then analysed statistically.SettingAdult intensive care units or high dependency units in Japan.ResultsThree factors with 39 items were extracted through item analysis and confirmatory factor analysis as hypothesised (Factor 1: Preparation, Factor 2: Discussion and Factor 3: Follow-up), and the mean score per item for each factor was 3.57, 3.73 and 3.75, respectively. Nurses who had any certification or had worked in critical care unit for >5 years had a significantly greater score than the others. The Cronbach’s α were 0.86–0.96 and the intraclass correlation coefficients were 0.79–0.87.ConclusionThe Nursing Practice Scale for End-of-life Family conferences in critical care is a valid and reliable scale. This study could effectively facilitate communication among patients, their families and healthcare providers.     

EfCCNa survey: European intensive care nurses' attitudes and beliefs towards end-of-life care

Background: Available literature suggests that critical care nurses have varied experiences in relation to end‐of‐life (EOL) care. Few studies have examined the involvement of European intensive care nurses’ involvement in EOL care decisions and the extent to which their nursing practice is based on shared beliefs, experiences and attitudes. Aim: To investigate experiences and attitudes of European intensive care nurses regarding EOL care. Methods: Using a survey method, delegates (n = 419) attending an international critical care nursing conference were invited to complete a self‐administered questionnaire about their involvement with EOL care practices. The questionnaire composed of 45 items and was available in three European languages. Results: A total of 164 questionnaires were completed, yielding a response rate of 39%. The majority of respondents (91·8%) indicated direct involvement in EOL patient care, while 73·4% reported active involvement in decision‐making process. 78·6% of respondents expressed commitment to family involvement in EOL decisions, however only 59·3% of the participants said that this was routinely undertaken (p < 0·0005, Z = ?4·778). In decisions to withdraw or withhold therapy, 65% would decrease the flow of inspired oxygen, 98·8% provide continuous pain relief and 91·3% endorse open visiting. The majority (78%) disagreed that dying patients should be transferred to a single room. A division of views was observed in relation to 44% agreeing that patients should be kept deeply sedated and equal numbers contesting the continuation of nutritional support (41·6% versus 42·3%). Conclusions: The involvement of European intensive care nurses in EOL care discussions and decisions is reasonably consistent with many engaged in initiating dialogue with coworkers. In general, views and experiences of EOL care were similar, with the exception of the provision of nutrition and use of sedation. Relevance to practice: Use of formal guidelines and education may increase nurses’ involvement and confidence with EOL decisions.     

An analysis of medicine costs of adult patients on a critical care unit

Purpose

To evaluate the costs of medicines used to treat critically ill patients in an intensive care environment and to correlate this with severity of illness and mortality.

Materials and Methods

The study was conducted at a London Teaching Hospital Critical Care Unit. Data were collected for patients who were either discharged or died during September 2011 and stayed longer than 48 hours. The drug cost was related to 150 drugs that were then related to patient's acuity and outcome.

Results

The median daily drug cost of the 85 patients was £26. The highest cost patients in the 85th percentile had significantly higher daily drug costs (median, £403) and higher scores for patient acuity. Patients with hematologic malignancy had a median daily drug cost (£561) more than 20 times higher than those without. A regression analysis based on patient's diversity explained 93% of the variance in the daily drug cost.

Conclusions

Although the median daily drug cost for an adult critically ill patient was low, this cost significantly escalated with patient acuity and hematologic malignancy. A reference method has been designed for an in-depth evaluation of daily drug cost that could be used to compare expenditure in other units.     

Communication of end-of-life decisions in European intensive care units

Objective To examine end-of-life (EOL) practices in European ICUs: who makes these decisions, how they are made, communication of these decisions and questions on communication between the physicians, nurses, patients and families.Design Data collected prospectively on EOL decisions facilitated by a questionnaire including EOL decision categories, geographical regions, mental competency, information about patient wishes, and discussions with patients, families and health care professionals.Setting 37 European ICUs in 17 countriesPatients ICU physicians collected data on 4,248 patients.Results 95% of patients lacked decision making capacity at the time of EOL decision and patients wishes were known in only 20% of cases. EOL decisions were discussed with the family in 68% of cases. Physicians reported having more information about patients wishes and discussions in the northern countries (31%, 88%) than central (16%, 70%) or southern (13%, 48%) countries. The family was more often told (88%) than asked (38%) about EOL decisions. Physicians reasons for not discussing EOL care with the family included the fact that the patient was unresponsive to therapy (39%), the family was unavailable (28%), and the family was thought not to understand (25%).Conclusions ICU patients typically lack decision-making capacity, and physicians know patients wishes in only 20% of EOL decisions. There were regional differences in discussions of EOL decisions with families and other physicians. In European ICUs there seems to be a need to improve communicationP. Sjokvist died in December 2003Funding was provided by the European Concerted Action project and by the European Commission (contract PL963733), the Chief Scientists Office of the Ministry of Health, Israel (grant no. 4226), the European Society of Intensive Care Medicine (ESICM) and by OFES Switzerland (Biomed, no. 980271)     

Improving end-of-life care: gathering suggestions from family members

Tertiary care centers are criticized for not providing a peaceful death experience. This qualitative study was undertaken to ascertain suggestions family members (N = 29) might have to improve the situation. Family members made three major suggestions where the negative effects of the complex hospital system might be ameliorated when caring for dying patients: facilitate improved interaction between the dying patient and the family; improve interactions between caregivers and patients/families; and create a setting, or milieu, more conducive to these interactions. Further, family members related an overwhelming need to be close physically to their dying loved one; to be given permission, instruction, and opportunities to touch their loved one; to receive more information from caregivers; and to have their and their loved one's personhood acknowledged and respected. Thus, nurses should engage in respectful, personalized conversations with patients and families that allow them to define the dying experience they desire.     

Intensive care unit cultures and end-of-life decision making

PURPOSE: Prior researchers studying end-of-life decision making (EOLDM) in intensive care units (ICUs) often have collected data retrospectively and aggregated data across units. There has been little research, however, about how cultures differ among ICUs. This research was designed to study limitation of treatment decision making in real time and to evaluate similarities and differences in the cultural contexts of 4 ICUs and the relationship of those contexts to EOLDM. MATERIALS AND METHODS: Ethnographic field work took place in 4 adult ICUs in a tertiary care hospital. Participants were health care providers (eg, physicians, nurses, and social workers), patients, and their family members. Participant observation and interviews took place 5 days a week for 7 months in each unit. RESULTS: The ICUs were not monolithic. There were similarities, but important differences in EOLDM were identified in formal and informal rules, meaning and uses of technology, physician roles and relationships, processes such as unit rounds, and timing of initiation of EOLDM. CONCLUSIONS: As interventions to improve EOLDM are developed, it will be important to understand how they may interact with unit cultures. Attempting to develop one intervention to be used in all ICUs is unlikely to be successful.     

Limiting life-sustaining treatment in German intensive care units: A multiprofessional survey

Purpose

Deciding about the limitation of life-sustaining treatment (LST) is a major challenge for intensive care medicine. The aim of the study was to investigate the practices and perspectives of German intensive care nurses and physicians on limiting LST.

Methods

We conducted an anonymous, self-administered questionnaire survey among the 268 nurses and 95 physicians on all 10 intensive care units of the Munich University Hospital, Germany.

Results

The response rate was 53%. Of all respondents, 91% reported being confronted with the topic at least once a month. Although all reported limiting cardiopulmonary resuscitation, almost no one reported limiting artificial hydration. Half of nurses and junior physicians felt uncertain about the decision-making process. Junior physicians were most dissatisfied with their training for this task and expressed the highest fear of litigation. Nurses were less satisfied than physicians with the communication process. Both nurses and relatives were not routinely involved in decision making. There is no standardized documentation practice, and many notes are not readily accessible to nurses.

Conclusions

Limiting LST is common in German intensive care units. The major shortcomings are team communication, communication with the patient's family, and documentation of the decision-making process.