Mildred Z. Solomon

Quality indicators for end-of-life care in the intensive care unit.

ObjectiveThe primary goal of this study was to address the documented deficiencies in end-of-life care (EOLC) in intensive care unit settings by identifying key EOLC domains and related quality indicators for use in the intensive care unit through a consensus process. A second goal was to propose specific clinician and organizational behaviors and interventions that might be used to improve these EOLC quality indicators. ParticipantsParticipants were the 36 members of the Robert Wood Johnson Foundation (RWJF) Critical Care End-of-Life Peer Workgroup and 15 nurse-physician teams from 15 intensive care units affiliated with the work group members. Fourteen adult medical, surgical, and mixed intensive care units from 13 states and the District of Columbia in the United States and one mixed intensive care unit in Canada were represented. MethodsAn in-depth literature review was conducted to identify articles that assessed the domains of quality of EOLC in the intensive care unit and general health care. Consensus regarding the key EOLC domains in the intensive care unit and quality performance indicators within each domain was established based on the review of the literature and an iterative process involving the authors and members of the RWJF Critical Care End-of-Life Peer Workgroup. Specific clinician and organizational behaviors and interventions to address the proposed EOLC quality indicators within the domains were identified through a collaborative process with the nurse-physician teams in 15 intensive care units. Measurements and Main ResultsSeven EOLC domains were identified for use in the intensive care unit: a) patient- and family-centered decision making; b) communication; c) continuity of care; d) emotional and practical support; e) symptom management and comfort care; f) spiritual support; and g) emotional and organizational support for intensive care unit clinicians. Fifty-three EOLC quality indicators within the seven domains were proposed. More than 100 examples of clinician and organizational behaviors and interventions that could address the EOLC quality indicators in the intensive care unit setting were identified. ConclusionsThese EOLC domains and the associated quality indicators, developed through a consensus process, provide clinicians and researchers with a framework for understanding quality of EOLC in the intensive care unit. Once validated, these indicators might be used to improve the quality of EOLC by serving as the components of an internal or external audit evaluating EOLC continuous quality improvement efforts in intensive care unit settings.

New and Lingering Controversies in Pediatric End-of-Life Care

Objectives. Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study’s objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. Methods. Three children’s hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. Results. A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, “At times, I have acted against my conscience in providing treatment to children in my care.” For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, ∼20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, “Sometimes I feel we are saving children who should not be saved,” as agreed with the statement, “Sometimes I feel we give up on children too soon.” However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, “Sometimes I feel the treatments I offer children are overly burdensome.” Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92–98%, depending on specialty) and nurses (range: 83–85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. Conclusions. There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians’ regard for the dead-donor rule.

Difficult conversations in health care: cultivating relational learning to address the hidden curriculum.

The authors describe the philosophy and pedagogical approach of an innovative educational program, grounded in principles of relational learning and designed to improve the preparedness of health care professionals for engaging in challenging conversations with patients and families. The Program to Enhance Relational and Communication Skills (PERCS) is a project of The Institute for Professionalism and Ethical Practice at Children’s Hospital Boston, developed in collaboration with Education Development Center, Inc. The one-day workshop is interdisciplinary in its structure, includes practitioners with varying levels of professional experience, uses trained actors to portray patients and family members, and involves learners in improvised case scenarios. The program responds to several developments in contemporary health care: medical education reform, changing definitions of professional competence, and calls for greater attention to qualities of compassion, trust, and respect in practitioners’ relationships with patients and families. The program’s pedagogy responds to these developments by creating a safe climate for relational learning, by enacting emotionally challenging and ethically salient case scenarios, and by integrating patient and family perspectives in novel and substantive ways. By creating a curriculum and learning environment that explicitly embraces the moral experience of learners, the program’s developers aim to exert a countercultural influence on the dehumanizing effects of the hidden curriculum.

Difficult conversations: Improving communication skills and relational abilities in health care*

Background: Communication skills and relational abilities are essential core competencies that are associated with improved health outcomes, better patient adherence, fewer malpractice claims, and enhanced satisfaction with care. Yet, corresponding educational opportunities are sorely underrepresented and undervalued. Objective: To evaluate the impact of an interdisciplinary experiential learning paradigm to improve communication skills and relational abilities of pediatric critical care practitioners. Design: Prepost design, including baseline, immediate follow-up, and 5-month self-report questionnaires. Setting: Tertiary care pediatric hospital, Childrens Hospital Boston. Participants: One hundred six interdisciplinary clinicians with a range of experience levels and clinical specialties. Measurements: Participants rated their sense of preparation, communication and relational skills, confidence, and anxiety. Open-ended questions asked participants about lessons learned, aspects of the training they found most helpful, and suggestions to improve the training. Main Results: When questions were posed in a yes/no format, participants were nearly unanimous (93% to 98%) that the training had improved their sense of preparation, communication skills, and confidence immediately after and 5 months posttraining. Ninety percent of participants reported improvements in establishing relationships immediately after the training and 84% reported improvements 5 months posttraining. Eighty-two percent reported reduced anxiety immediately after training and 74% experienced reduced anxiety 5 months posttraining. On Likert items, 70% estimated their preparation had improved; 40% to 70% reported improvements in communication skills, confidence and anxiety, and 15% in relationship skills. Four qualitative themes emerged: identifying ones existing competence; integrating new communication skills and relational abilities; appreciating interdisciplinary collaboration; and valuing the learning itself. Conclusions: A 1-day experiential learning paradigm focused on communication skills and relational abilities was highly valued, clinically useful, and logistically feasible. Participants reported better preparation, improved communication and relational skills, greater confidence, and reduced anxiety. Participants deepened their understanding of family perspectives, recognized valuable existing competencies, and strengthened their commitment to interdisciplinary teamwork.

Communication in intensive care settings: The challenge of futility disputes

In intensive care settings, suboptimal communication can erode family trust and fuel so-called “futility” disputes. Presenting a teaching case used by >225 hospitals participating in the Decisions Near the End-of-Life program, we identify critical communication challenges and opportunities. We emphasize that good communication requires not only clear and sensitive language but also clinician self-awareness, psychological insight, and an institutional culture that promotes good communication with families. The article concludes with two examples of steps institutions can take to foster good communication between families and healthcare professionals.

Time to Revise the Approach to Determining Cardiopulmonary Resuscitation Status

IN US HOSPITALS, CARDIOPULMONARY RESUSCITATION (CPR) is the de facto default option—patients must “opt out” by requesting or consenting to a do-not-attemptresuscitation order. Despite its worthy intent, requiring all patients or their surrogates to consent to a do-notattempt-resuscitation order to avoid CPR has resulted in an ethically unjustifiable practice that exposes many patients to substantial harms. Whenever there is a plausible risk of cardiac arrest, the standard approach is to ask patients or their surrogates about their preferences regarding CPR. However, the very act of asking can suggest to the patient and family that CPR may be beneficial, even when the clinician believes otherwise. Additionally, research in cognitive psychology has revealed that default options are often interpreted as recommendations or guidelines, or as the path of least resistance, and that such default options significantly affect decision making. For these reasons, patients or their surrogates may be biased toward choosing full resuscitation status, even when CPR likely would bring little or no benefit and would risk considerable harm. Therefore, the standard approach of neutrally seeking consent to withhold CPR may inadvertently diminish patients’ and families’ comprehension of the clinical situation and lead to decisions that are grounded neither in patients’ values nor in their best interest. Instead of assuming that CPR must always be offered, we suggest 3 distinct approaches based on the likelihood and degree of potential benefits and harms of resuscitation. In all 3 approaches, physicians must take the time to fully explain the patient’s prognosis and likely disease trajectory, clarify any misconceptions, and elicit the patient’s values and goals, which should form the basis for all CPR discussions. However, the options offered by the physician should change as the likely proportion of burdens to benefits increases.

How physicians talk about futility: making words mean too many things.

“There’s glory for you!” “I don’t know what you mean by ‘glory,’ ” Alice said. Humpty Dumpty smiled contemptuously. “Of course, you dont-till 1 tell you. 1 meant ‘there’s a nice knock-down argument.”’ “But ‘glory’ doesn’t mean a ‘nice knock-down argument,” Alice objected. “When 1 use a word, ’’ Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean-neither more nor less.” “The question is,” said Alice, “whether you can make words mean so many different things.” “The question is,”said Humpty Dumpty, “which is to be master, that’s all.”’

Moving Comparative Effectiveness Research Into Practice: Implementation Science And The Role Of Academic Medicine

The success of the federal investment in comparative effectiveness research will hinge on using the power of science to guide reforms in health care delivery and improve patient-centered outcomes. Translating the results of comparative effectiveness research into practice calls for the rigors of implementation science to ensure the efficient and systematic uptake, dissemination, and endurance of these innovations. Academic medicine can help answer the call by thoroughly integrating its research and training missions with clinical care that is focused on patient-centered outcomes; building multidisciplinary teams that include a wide range of experts such as clinicians, clinical and implementation scientists, systems engineers, behavioral economists, and social scientists; and training future care providers, scientists, and educators to carry innovations forward.

I was able to still be her mom--parenting at end of life in the pediatric intensive care unit.

Objectives: The death of a child in the pediatric intensive care unit is perhaps one of the most devastating and challenging experiences a parent can ever endure. This article examines how parents of children dying in the pediatric intensive care unit understood their role and discusses implications for clinical care and policy. Design: Retrospective, qualitative study. Setting: Two pediatric intensive care units located in children’s hospitals within academic medical centers in the northeastern United States. Subjects: Parents of 18 children who died in the pediatric intensive care unit. Interventions: Semistructured telephone interviews, digitally recorded and transcribed. Measurements and Main Results: Many of the factors deemed important by the parents related to their capacity to be a “good parent” to their child throughout his or her stay in the pediatric intensive care unit. Specifically, parents sought meaningful ways to express and assert their parenthood across three domains: 1) providing love, comfort, and care; 2) creating security and privacy for the family; and 3) exercising responsibility for what happens to one’s child. Conclusions: Parents’ ability to fulfill the essential features of their role as parents of children dying in the pediatric intensive care unit shapes how they perceive the quality of the experience. Pediatric intensive care unit clinical care and policies can and should uphold and protect these features enabling parents to feel that, despite the outcome, they had done their best on behalf of their children.

Pediatric Palliative Care: Relationships Matter and So Does Pain Control

More than 50,000 children die each year in the United States, and hundreds of thousands more struggle with the challenges of a life-threatening condition. Much about their tragic circumstances is beyond medicine’s control. Nevertheless, three articles in this issue provide new insights into the needs of these children and their parents. Careful reading of these studies suggests concrete steps committed clinicians can take to help meet those needs. A theme across all three studies is clear: relationships matter. In addition, two of the studies bring attention to the continuing problem of unrelieved pain near the end of life. Because modern medicine does have the technical means to reduce nearly all pain, it can be argued that the failure to do so is not a technical failing but rather a symptom of insufficient commitment. Viewed this way, all three articles underscore the centrality of nonabandonment. They underscore the importance of staying connected with patients and families and providing the best that medicine can offer, including both human contact and palliative interventions like optimal pain medication, even and especially when death is imminent. Hinds et al surveyed pediatric patients with advanced cancer, who were aged 10 to 20 years old, within 7 days of participating in one of following three end-of-life decisions: whether to enroll in a phase I trial, whether to institute a do not resuscitate order, and whether to forego life-sustaining technologies in favor of palliative care measures only. They found that these children and adolescents realized they were involved in an end-of-life decision, understood the consequences of their decision (that death is the outcome no matter what and that a phase I trial brings personal hazards but may help others), and could share the reasons for their preferences. In short, Hinds et al demonstrate that older children and particularly adolescents have sufficient cognitive ability to warrant an active role in decision making about their care. Moreover, both children and adolescents were influenced by their concern about others. Sometimes, this manifested as concern to act in ways that would make their parents happy (for example, by enrolling in the phase I trial even when they did not wish to). However, both children and their parents were also often motivated out of concern for others not personally known to them. The authors report this altruistic stance toward strangers as surprising because at least one study has documented that altruism is not a major motivator of phase I trial enrollment for adults, and they speculate that such altruism among the young people they surveyed may be part of the maturational effect of a life-ending illness on a child or adolescent. It also strikes us that altruism may be more important among gravely ill children and their parents than among adults near the end of life because of the desire to see some good arise in the context of such great despair. The poignancy of a young life cutoff so prematurely may provide a context in which both the children and their parents seek a way to make something good happen in an otherwise deeply tragic situation. There are studies documenting that, after death, parents have found meaning and solace in the opportunity to donate their children’s organs. There may be a similar underlying urge, even among the children themselves, to choose actions before death that will enable them to make a positive contribution to others as part of their legacy. These explanations are only speculative but are worthy of further exploration in future research. Mack et al surveyed parents of children who had died of cancer and their oncologists to ascertain parents’ and physicians’ assessments of the quality of care the children had received. A full 82% of the parents felt that the quality of physician care at the end of life was excellent or very good. However, the better the communication between physicians and parents, the greater was the parental assessment of JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 36 DECEMBER 2