Ethical decision making and the critical care team

This article studies the process of decision making used to arrive at decisions to withdraw treatment in the adult and neonatal intensive care unit. The emerging role of team decision making is described as a cumulative process of dialogue between the health care team and the patient's family (including the patient in some cases).     

Decision conflict and regret among surrogate decision makers in the medical intensive care unit

IntroductionFamily members of critically ill patients in the intensive care unit face significant morbidity. It may be the decision-making process that plays a significant role in the psychological morbidity associated with being a surrogate in the ICU. We hypothesize that family members facing end-of-life decisions will have more decisional conflict and decisional regret than those facing non–end-of-life decisions.MethodsWe enrolled a sample of adult patients and their surrogates in a tertiary care, academic medical intensive care unit. We queried the surrogates regarding decisions they had made on behalf of the patient and assessed decision conflict. We then contacted the family member again to assess decision regret.ResultsForty (95%) of 42 surrogates were able to identify at least 1 decision they had made on behalf of the patient. End-of-life decisions (defined as do not resuscitate [DNR]/do not intubate [DNI] or continuation of life support) accounted for 19 of 40 decisions (47.5%). Overall, the average Decision Conflict Scale (DCS) score was 21.9 of 100 (range 0-100, with 0 being little decisional conflict and 100 being great decisional conflict). The average DCS score for families facing end-of-life decisions was 25.5 compared with 18.7 for all other decisions. Those facing end-of-life decisions scored higher on the uncertainty subscale (subset of DCS questions that indicates level of certainty regarding decision) with a mean score of 43.4 compared with all other decisions with a mean score of 27.0. Overall, very few surrogates experienced decisional regret with an average DRS score of 13.4 of 100.ConclusionsNearly all surrogates enrolled were faced with decision-making responsibilities on behalf of his or her critically ill family member. In our small pilot study, we found more decisional conflict in those surrogates facing end-of-life decisions, specifically on the subset of questions dealing with uncertainty. Surrogates report low levels of decisional regret.     

Metasynthesis: withdrawing life‐sustaining treatments: the experience of family decision‐makers

Aim. The present study was undertaken to synthesise findings from qualitative investigations of family participation in decisions to withdraw and/or withhold life‐sustaining treatment from a seriously ill family member. Background. As a consequence of increasing effectiveness and sophistication of available medical interventions, death is commonly preceded by a decision to withdraw or withhold potentially life‐sustaining treatments. These decisions take place in a bioethical context characterised by the preeminence of self‐determination, but patients are typically too ill to make their own decisions. Thus, family members are called upon to participate in these morally consequential decisions on the patient’s behalf. Design. Metasynthesis Method. Metasynthesis is a form of inquiry that provides for integration of qualitative studies’ findings to strengthen knowledge for practice and advance theoretical development. This metasynthesis was conducted using the constant comparative methods of grounded theory. Results. Family members engage in a process of participation in decision‐making that is comprised of three major categories: reframing reality, relating and integrating. Surrogates used both cues and information as they reframed their understanding of the patient’s status. Relationships with providers and with other family members powerfully influenced the decision‐making process. Integrating was characterised by reconciling and going forward. This part of the process has both intrapersonal and interpersonal aspects and describes how family decision‐makers find meaning in their experience and move forward in their lives. Conclusions. This synthesis provides a more comprehensive and empirically supported understanding of family members’ experiences as they participate in treatment decisions for dying family members. Relevance to clinical practice. This metasynthesis provides evidence to improve family care during treatment withdrawal/withholding decision‐making and a theoretical model that can be used to guide creation of clinical practice guidelines. Through increased understanding of family members’ experiences, clinicians can more effectively support family decision‐making processes.     

Disorders of Consciousness and Disordered Care: Families,Caregivers, and Narratives of Necessity

By their nature, care decisions for patients with severe disorders of consciousness must involve surrogates. Patients, so impaired, have lost their decision-making capacity and the ability to direct their own care. Surrogates—family members, friends, or other intimates—must step in and make decisions about ongoing care or its withdrawal. This article shares the narrative experiences of these surrogate decision makers as they encounter the American health care system and accompany patients from injury through rehabilitation. Through their perspectives, the article considers challenges to ongoing care and rehabilitation that are a function of a prevailing medical infrastructure and reimbursement framework better suited to patients with acute care needs. Specific attention is paid to the ethical challenges posed by reimbursement strategies such as “medical necessity” as well as those proposed for the Affordable Care Act. The argument concludes that when it comes to care for a disorder related to consciousness, its provision is not discretionary, and its receipt is not an entitlement but a civil right.     

Ethics and professional practice in oncology

All cancer treatment should be guided by patient values. These values can be ascertained either through dialogue about treatment modalities, interventions and their consequences, or through the expressed wishes of patients or their surrogates. A balance should be struck between always following patient wishes and traditional health care paternalism, whereby patients have had little or no say about their treatment. The best way to strike this balance is through advanced directives and intensive dialogue with the patient or surrogates about the patient's values throughout the course of treatment. In this way, the care of the cancer patient can become a truly fiduciary responsibility. Health care providers can salvage their traditional obligation to preserve life through a commitment to the preservation of the meaning of the patient's life. Conflicts about treatment are difficult to resolve, but a mechanism does exist for making ethical decisions. Institutions should support such mechanisms and guarantee the protection of the conscience of all individuals caring for patients, with the right to withdraw without prejudice to one's job, and without abandoning the patient.     

End-of-life decisions in intensive care units: attitudes of physicians in an Italian urban setting

Objective To assess the attitudes of physicians in Milan, Italy, intensive care units (ICUs) regarding end-of-life decisions.Design Anonymous self-administered questionnaire.Setting All 20 ICUs in Milan.Participants Physicians employed in the ICUs.Measurements and results The response rate was 87% (225 of 259). Eighty-two percent of respondents estimated that <10% of deaths in their ICU followed foregoing treatment, whereas 6% estimated that more of 25% deaths followed foregoing treatment. Male gender, long professional experience, and activity mainly in the ICU were significantly associated with greater willingness to forego life-sustaining treatments. Eighty-nine percent of respondents said ethical consultation on end-of-life decisions was never sought; 58% said they would not respect the expressed desire of the patient to forego treatment; and 48% never noted the decision to forgo treatment on the clinical record. After a decision to withdraw treatment, 31% of physicians said they maintained ongoing treatment, but withheld CPR for cardiac arrest; 47% considered withholding and withdrawing life support were not ethically equivalent.Conclusions Most physicians considered that most ICU deaths were not the result of deliberately foregoing life support. Although the overall trend was to intervene minimally in patients' dying, individual factors significantly influenced end-of-life decisions. Few physicians sought external ethical advice and decisions were entirely taken by the medical team. Direct involvement of family and treating physician was limited, and the expressed wishes of the patient were generally ignored.Electronic Supplementary Material Supplementary material is available in the online version of this article at .     

At a threshold: making decisions when you don't have all the answers

Many people who sustain a brain injury also lose decisional capacity. They need someone who will be a partner with clinicians in making decisions on their behalf. This article reviews ethical aspects of decision making; the legal foundation in the United States for surrogate decision making; the experience of surrogate decision making on behalf of people who have a brain injury, including similarities and differences between such decision making for the dying and for those who have a brain injury; and ways to approach intractable disagreements between surrogate or family and clinicians. It provides guidelines for clinicians and surrogates and suggests topics for research. Two people who have suffered a brain injury and the spouse of one are coauthors.     

The withdrawal of life support in adult intensive care: an evaluative review of the literature

To ensure that intensive care is both cost-effective and humanitarian depends on a willingness to withdraw treatment once the prognosis is recognised as being hopeless, as the process of dying may be prolonged if futile treatment is continued Continuing advances in technology, science and professional care, raising new ethical, economic and legislative dilemmas, mean the decision to withdraw treatment in intensive care has become an issue of renewed concern These advances require both the development of scientific methods to support the decision-making process and an understanding of the ethical balance that underpins such decisions with particular reference to the intensive care nurse Whilst there is recognition that the families of patients who die in intensive care require ongoing support and bereavement care, there is little to suggest that the needs of the multidisciplinary personnel caring for these patients are understood or provided for This paper aims to explore quality end-of-life care, common medical practices, research into the role of the expert nurse in caring for the dying patient and new strategies for the incorporation of palliative care Strategies are proposed to translate the shared ownership, responsibility and accountability of clinical governance regarding these decisions into positive action, consensus and collaboration at both local and national level.     

A discourse analysis of difficult clinical situations in relation to nutrition and hydration during end of life care

Aim and objectives. The following discussion builds upon a previous publication that reported on the perceptions and discourses of palliative care nurses and doctors in relation to nutrition and hydration at the end of life. The aim of this paper is to report the discourses of nurses and doctors in relation to the challenges they faced when managing the care of patients with severe brain injury vs. the clearer cut situations when caring for terminally ill patients with cancer. The objectives of the study were to:

• ? explore the tensions in the discourses during end of life care,
• ? explore the challenges regarding nutrition and hydration at the end of life.

Background. The decision to withdraw life support seems to be made more readily than the decision to withdraw nutrition and hydration at the end of life. The abatement of nutrition and hydration during the terminal phase of life is a controversial issue for a range reasons. Indeed, whilst it is accepted practice in the palliative care setting, nurses and doctors often struggle with the idea. Design. The design for this study used discourse analysis framed by a post structural framework. Method. Focus groups were conducted with nurses working in palliative care units. Single interviews were conducted with doctors from a tertiary palliative care unit. Results. The findings revealed contesting discourses involving quality of life and the prolongation of life. Conclusions. The provision of food and fluid has profound emotional and social meanings for patients and families. The study reported here examined these issues with health professionals. The findings point to the challenges and tensions faced by health professionals in relation to decision making and medical hydration during end of life care. The concern is that tensions arise when decisions need to be made and how best to make these. The contesting discourses for nurses and doctors when nutrition and hydration is ceased involve maintaining quality of life vs. the prolongation of life. Relevance to clinical practice. Medical and nursing staff have different attitudes and beliefs towards end of life care. Tensions arise when decisions need to be made based on quality of life or prolongation of life. The successful merging of curative and palliative care is not without challenges. There has been little exploration of this situation.     

Surrogate Decision-Making: How to Promote Best Outcomes in Difficult Times

Respect for patient autonomy is highly valued in American society and in nursing professional codes of ethics. US law protects the right of patients to self-determination in health care decisions. Advanced practice registered nurses must be able to identify patients who are not competent to make these decisions and the surrogates who will make decisions in their place. Advance planning with patients and providing optimal support for their surrogates are part of individualized, total-patient care and key to promoting best outcomes for patients and their families who are experiencing extremely difficult choices and significant life transitions.     

End-of-life decisions in the Intensive Care Unit (ICU) – Exploring the experiences of ICU nurses and doctors – A critical literature review

BackgroundEnd-of-life decision making in the Intensive Care Unit (ICU), can be emotionally challenging and multifaceted. Doctors and nurses are sometimes placed in a precarious position where they are required to make decisions for patients who may be unable to participate in the decision-making process. There is an increasing frequency of the need for such decisions to be made in ICU, with studies reporting that most ICU deaths are heralded by a decision to withdraw or withhold life-sustaining treatment.ObjectivesThe purpose of this paper is to critically review the literature related to end-of-life decision making among ICU doctors and nurses and focuses on three areas: (1) Who is involved in end-of-life decisions in the ICU?; (2) What challenges are encountered by ICU doctors and nurses when making decisions?; and (3) Are these decisions a source of moral distress for ICU doctors and nurses?Review methodThis review considered both qualitative and quantitative research conducted from January 2006 to March 2014 that report on the experiences of ICU doctors and nurses in end-of-life decision making. Studies with a focus on paediatrics, family/relatives perspectives, advance care directives and euthanasia were excluded. A total of 12 papers were identified for review.ResultsThere were differences reported in the decision making process and collaboration between doctors and nurses (which depended on physician preference or seniority of nurses), with overall accountability assigned to the physician. Role ambiguity, communication issues, indecision on futility of treatment, and the initiation of end-of-life discussions were some of the greatest challenges. The impact of these decisions included decreased job satisfaction, emotional and psychological ‘burnout’.ConclusionsFurther research is warranted to address the need for a more comprehensive, standardised approach to support clinicians (medical and nursing) in end-of-life decision making in the ICU.     

End of life decisions: Nurses perceptions, feelings and experiences

Decisions to withdraw treatment are made on a regular basis in intensive care units. While nurses play a central role in patient care, previous studies have found that they are not always involved in withdrawal decisions. AIM: To explore the experiences of ICU nurses caring for patients who have had their treatment withdrawn and to answer two research questions: what role do nurses play and how does this affect them? METHOD: Constructivist grounded theory was used to explore the experiences and feelings of ICU nurses. A purposive sample of eight ICU nurses participated and semi-structured interviews were used to collect data. Framework analysis was used to facilitate systematic analysis. RESULTS: The analysis revealed two major themes (1) the nurse's role: experience counts, not really a nurse's decision, planting the seed, supporting the family and being a patient advocate and (2) perceptions of the withdrawal of treatment: getting the timing right and emotional labour. CONCLUSIONS: Nurses make an important contribution to end of life decisions and care. Guidelines recommend they have input into withdrawal decisions, therefore it is imperative that nurses are supported in this role and their responsibilities to continue to provide care during withdrawal.     

Intensive care of traumatic brain injury in children

Traumatic brain injury among other injuries of human body reaches up to 30-50% and, according to the WHO, it grows by 2%. Severe traumatic brain injury (such as severe brain contusion, epidural, subdural and intracerebral hematoma, intracerebral hygroma, diffuse axonal injury) in the structure of general trauma amounts 4-20%. The prognosis of traumatic brain injury mainly depends on the timeliness of the first aid. The therapeutic measures usually begin at the place of the accident or in the ambulance vehicle (hence the clear role of the specialist team). It is advised for children with severe traumatic brain injury to be directed to specialized neurosurgical or trauma hospitals, where it is possible to provide them with adequate medical care. This work is dedicated to the enhancement of the intensive care quality during severe traumatic brain injury in children of Chuvash Republic, by the means of integrated patient assessment.     

French intensivists do not apply American recommendations regarding decisions to forgo life-sustaining therapy

OBJECTIVE: Recommendations for making and implementing decisions to forgo life-sustaining therapy in intensive care units have been developed in the United States, but the extent that they are realized in practice has yet to be measured. DESIGN: Prospective, multicenter, 4-wk study. For each patient with an implemented decision to forgo life-sustaining therapy, the deliberation and decision implementation procedures were recorded. SETTING: French intensive care units. PATIENTS: All consecutive patients admitted to 26 French intensive care units. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 1,009 patients admitted, 208 died in the intensive care unit. A decision to forgo life-sustaining therapy was implemented in 105 patients. The number of supportive treatments forgone was 2.3 +/- 1.7 per patient. Decisions to forgo sustaining therapy were preceded by 3.5 +/- 2.5 deliberation sessions. Proxies were informed of the deliberations in 62 (59.1%) cases but participated in only 18 (17.1%) decisions. The patient's perception of his or her quality of life was rarely evaluated (11.5%), and only rarely did the decision involve evaluating the patient's wishes (7.6%), the patient's religious values (7.6%), or the cost of treatment (7.6%). Factors most frequently evaluated were medical team advice (95.3%), predicted reversibility of acute disease (90.5%), underlying disease severity (83.9%), and the patient's quality of life as evaluated by caregivers (80.1%). CONCLUSIONS: A decision to withhold or withdraw life-sustaining therapy was implemented for half the patients who died in the French intensive care units studied. In many cases, the decision was taken without regard for one or more factors identified as relevant in U.S. guidelines.     

Judgements and processes in care decisions in acute medical and surgical wards

The decisions which health care professionals make are the basis of treatment and care given. In order to evaluate effective care it seems logical to suggest that an awareness of the decisions which health care professionals make and how they make them is needed. This study examines the processes nurses use when making decisions about the health care needs of acutely ill patients. In stage one, 104 qualified nurses were interviewed to identify how they decide health care needs. In stage two, a 'think aloud' technique was used with patient simulations to obtain verbal protocols from a further 55 qualified nurses to identify the information strategies they used when making these decisions. The results suggest that nurses base their health care decisions mainly on their assessment of qualitative patient states or conditions. Initial indications are that the processes used differ from those characterized in the diagnostic reasoning model, with the context in which decisions are made being an important influence together with nurses' experience. It is suggested that, in order to develop effective predictive models and clinical guidelines which aid decision making, more research into the nature of health care professionals' decision making is carried out.     

Withdrawal of treatment in the intensive care unit: the ethical and legal issues

Many articles have been written and studies conducted into why our patients' pain is not being managed more effectively. The myths and fears still persist, yet the solution is known. Why, then, can't our profession help those we care most about--our clients? Intensive care units (ICUs) have, over the last 30 years, become places of life-saving miracles, and as such, moral dilemmas have also been created. As early as 1976, applications have been made to courts for the withdrawal of life-sustaining treatment (Wallace, 1995). The decision to withdraw treatment is one faced by health professionals every day in the ICU, and there are many legal and ethical issues to consider. The emotional, and other, stakes are also high in this area for patient, family and care team. This paper discusses ethical and legal issues highlighting the principles, doctrines, legislation and precedents especially important in the making of the decisions to withdraw treatment. An ethical framework grid is suggested to assist with the decision-making process.     

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.     

Do parents or surrogates have the right to demand treatment deemed futile? An analysis of the case of Baby L

Do parents or surrogates have the right to demand treatment deemed futile? An analysis of the case of Baby L The purpose of this discussion paper is to address and analyse the ethical issues arising from the following questions: Do parents or surrogates of newborn infants have the right to demand treatment deemed ‘futile’? Should the religious beliefs of the infant's parents be given special consideration when deciding on the correct course of action? The case of Baby L, an infant born with severe disability will be used to aid the analysis. It is argued that health care providers have no obligation to provide ‘futile’ treatment based on the surrogates’ right to autonomy, but an obligation may arise from a duty of benevolence. However, acting from a duty of benevolence can ignore considerations of justice and fairness and does not always prompt the right course of action. Any decision regarding treatment options will involve ranking the beliefs and values of the parents or surrogate against the integrity of the health care team and the interest of society as a whole. The consequences of continuing or discontinuing life‐sustaining treatment for the infant, the parents and the health care team will also be considered and examined.     

Canadian nurses' and respiratory therapists' perspectives on withdrawal of life support in the intensive care unit

PURPOSE: To describe perspectives of nurses (RNs) and respiratory therapists (RTs) related to end-of-life care for critically ill patients. METHODS: For patients who had life support withdrawn in 4 Canadian university-affiliated ICUs, RNs and RTs reported their comfort level with decision making and process for 14 aspects of end-of-life care. RESULTS: Ninety-eight patients had life support withdrawn. Responses were received from 96 (98.0%) bedside RNs and 73 (74.5%) RTs. Most RNs (85/94, 90.4%) and RTs (50/73, 68.5%) were very comfortable with decisions to withhold cardiopulmonary resuscitation or to withdraw life support (83/94, 88.3% of RNs and 56/73, 76.7% of RTs). Most RNs (range 71.3%-80.65%) and RTs (60.0%-70.8%) were very comfortable with ventilation/oxygen withdrawal and sedation. Among paired responses for 72 (73.5%) of 98 patients, RTs rated less favorably than RNs ( P < .05): the quality of the physician explanation of the life support withdrawal process, the availability of the physician, the peacefulness of the dying process, and the amount of privacy for families. Suggested improvements included earlier and more inclusive discussions, clearer plans, and better preparation of families and the ICU team for patients' deaths. CONCLUSIONS: Most RNs and RTs were comfortable with decision making and the process of life support withdrawal, but they suggested several ways to improve end-of-life care.     

Withdrawal of nutritional support in the terminally ill

The technological advances of recent years have placed an increasingly troublesome burden on healthcare practitioners. When the focus of patient care becomes supportive in nature and not curative, decisions to withhold or withdraw medical treatment become important. The purpose of this article is to allow the reader to explore their own personal reasoning for their continued use of or withdrawal of nutritional support. Legal/ethical principles and approaches to withdraw treatment will be discussed and help guide providers in care options.