Choosing and using screening criteria for palliative care consultation in the ICU: a report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board.

OBJECTIVE: To review the use of screening criteria (also known as "triggers") as a mechanism for engaging palliative care consultants to assist with care of critically ill patients and their families in the ICU. DATA SOURCES: We searched the MEDLINE database from inception to December 2012 for all English-language articles using the terms "trigger," "screen," "referral," "tool," "triage," "case-finding," "assessment," "checklist," "proactive," or "consultation," together with "intensive care" or "critical care" and "palliative care," "supportive care," "end-of-life care," or "ethics." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website. STUDY SELECTION: Two members (a physician and a nurse with expertise in clinical research, intensive care, and palliative care) of the interdisciplinary Improving Palliative Care in the ICU Project Advisory Board presented studies and tools to the full Board, which made final selections by consensus. DATA EXTRACTION: We critically reviewed the existing data and tools to identify screening criteria for palliative care consultation, to describe methods for selecting, implementing, and evaluating such criteria, and to consider alternative strategies for increasing access of ICU patients and families to high-quality palliative care. DATA SYNTHESIS: The Improving Palliative Care in the ICU Advisory Board used data and experience to address key questions relating to: existing screening criteria; optimal methods for selection, implementation, and evaluation of such criteria; and appropriateness of the screening approach for a particular ICU. CONCLUSIONS: Use of specific criteria to prompt proactive referral for palliative care consultation seems to help reduce utilization of ICU resources without changing mortality, while increasing involvement of palliative care specialists for critically ill patients and families in need. Existing data and resources can be used in developing such criteria, which should be tailored for a specific ICU, implemented through an organized process involving key stakeholders, and evaluated by appropriate measures. In some settings, other strategies for increasing access to palliative care may be more appropriate.

Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care.

OBJECTIVE: Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. DATA SOURCES: We searched the MEDLINE database from inception to May 2011 for all English language articles using the term "surgical palliative care" or the terms "surgical critical care," "surgical ICU," "surgeon," "trauma" or "transplant," and "palliative care" or "end-of- life care" and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. DATA EXTRACTION AND SYNTHESIS: We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. CONCLUSIONS: Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. "Consultative," "integrative," and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and "culture" in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit.

Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care.

BACKGROUND: Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family. OBJECTIVE: To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments. METHODS: Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis. RESULTS: We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child's best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent. CONCLUSIONS: Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.

The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life.

PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.

Technology-dependency among patients discharged from a children's hospital: a retrospective cohort study.

BACKGROUND: Advances in medical technology may be increasing the population of children who are technology-dependent (TD). We assessed the proportion of children discharged from a children's hospital who are judged to be TD, and determined the most common devices and number of prescription medications at the time of discharge. METHODS: Chart review of 100 randomly selected patients from all services discharged from a children's hospital during the year 2000. Data were reviewed independently by 4 investigators who classified the cases as TD if the failure or withdrawal of the technology would likely have adverse health consequences sufficient to require hospitalization. Only those cases where 3 or 4 raters agreed were classified as TD. RESULTS: Among the 100 randomly sampled patients, the median age was 7 years (range: 1 day to 24 years old), 52% were male, 86% primarily spoke English, and 54% were privately insured. The median length of stay was 3 days (range: 1 to 103 days). No diagnosis accounted for more than 5% of cases. 41% were deemed to be technology dependent, with 20% dependent upon devices, 32% dependent upon medications, and 11% dependent upon both devices and medications. Devices at the time of discharge included gastrostomy and jejeunostomy tubes (10%), central venous catheters (7%), and tracheotomies (1%). The median number of prescription medications was 2 (range: 0-13), with 12% of cases having 5 or more medications. Home care services were planned for 7% of cases. CONCLUSION: Technology-dependency is common among children discharged from a children's hospital.

Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board.

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.

Physician reimbursement for critical care services integrating palliative care for patients who are critically ill.

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes.

Pediatric palliative care patients: a prospective multicenter cohort study.

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.

Lower extremity sensory function in children with cerebral palsy.

OBJECTIVES: (1) To determine the feasibility of qualitative sensory testing in the lower extremities (LE) of children with cerebral palsy (CP), especially spastic diplegia. (2) To determine if there is a detectable difference in qualitative LE sensory function in children with CP compared to typical children. (3) To determine if dorsal rhizotomy results in detectable changes in LE sensory function in children with spastic diplegia. DESIGN: Objectives 1 and 2: Prospective observational cohort study. Objective 3: Add-on to prospective interventional studies. SETTING: Regional tertiary children's hospital. PARTICIPANTS: Objectives 1 and 2: 62 children with CP and 65 typical children between 3-18 years of age. Objective 3: 34 children with spastic diplegia. INTERVENTIONS: Objectives 1 and 2: None. Objective 3: Dorsal rhizotomy. MAIN OUTCOME MEASURES: Pain, light touch, direction of scratch, vibration, toe position and knee position using standard qualitative techniques. RESULTS: Objective 1: 32 (52%) children with CP and 55 (85%) typical children completed all items (p = 0.09). Objective 2: Summary scores for separate LE sensory modalities were lower in children with CP for direction of scratch (p < 0.001), toe position (p = 0.01) and vibration sense (p = 0.01). Objective 3: No changes of LE sensory function. CONCLUSIONS: LE sensory testing in young children with CP is feasible. There is a qualitative sensory deficit in this sample of children with CP and specifically in children with spastic diplegia that is traditionally associated with dorsal column sensory modalities. A conservative dorsal rhizotomy does not produce a measurable change in LE sensory function in this sample of children with spastic diplegia.