Integrating Palliative Care Into the Care of Neurocritically Ill Patients: A Report From the Improving Palliative Care in the ICU Project Advisory Board and the Center to Advance Palliative Care.

OBJECTIVES: To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. DATA SOURCES: A search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term "palliative care," "supportive care," "end-of-life care," "withdrawal of life-sustaining therapy," "limitation of life support," "prognosis," or "goals of care" together with "neurocritical care," "neurointensive care," "neurological," "stroke," "subarachnoid hemorrhage," "intracerebral hemorrhage," or "brain injury." DATA EXTRACTION AND SYNTHESIS: We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. CONCLUSIONS: Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and clinician professionalism.

Palliative Care Training in Surgical Oncology and Hepatobiliary Fellowships: A National Survey of Program Directors.

BACKGROUND: Despite previous literature affirming the importance of palliative care training in surgery, there is scarce literature about the readiness of Surgical Oncology and hepatopancreaticobiliary (HPB) fellows to provide such care. We performed the first nationally representative study of surgical fellowship program directors' assessment of palliative care education. The aim was to capture attitudes about the perception of palliative care and disparity between technical/clinical education and palliative care training. METHODS: A survey originally used to assess surgical oncology and HPB surgery fellows' training in palliative care, was modified and sent to Program Directors of respective fellowships. The final survey consisted of 22 items and was completed online. RESULTS: Surveys were completed by 28 fellowship programs (70 % response rate). Only 60 % offered any formal teaching in pain management, delivering bad news or discussion about prognosis. Fifty-eight percent offered formal training in basic communication skills and 43 % training in conducting family conferences. Resources were available, with 100 % of the programs having a palliative care consultation service, 42 % having a faculty member with recognized clinical interest/expertise in palliative care, and 35 % having a faculty member board-certified in Hospice and Palliative Medicine. CONCLUSIONS: Our data shows HPB and surgical oncology fellowship programs are providing insufficient education and assessment in palliative care. This is not due to a shortage of faculty, palliative care resources, or teaching opportunities. Greater focus one valuation and development of strategies for teaching palliative care in surgical fellowships are needed.

Palliative care training in surgical oncology and hepatobiliary fellowships: a national survey of the fellows.

BACKGROUND: Surgical oncologists (SO) and hepatobiliary (HPB) surgeons frequently care for patients with advanced diseases near the end of life, yet little is known about their training, comfort, and readiness in the provision of palliative care. This study sought to assess the quality, adequacy, and extent of palliative care training and the readiness of SO and HPB fellows in delivering palliative care. METHODS: A self-administered survey was distributed to all fellows enrolled in Society of Surgical Oncology (SSO) and HPB fellowships during the 2013-2014 academic year. The survey assessed attitudes, training, experience, and readiness of fellows in caring for patients at the end of life. Descriptive analysis was performed, and Chi square, Student's t test, and the Mann-Whitney U test were used to compare mean or median values as appropriate. RESULTS: The response rate was 47.2 %, and 50.9 % of the fellows reported exposure to a palliative care specialty service during their fellowship. Of the study participants, 75 % observed their faculty discussing the side effects of surgery compared with 54 % who observed faculty communication with patients regarding end-of-life goals (p < 0.01). On the other hand, 40 % of the fellows were never observed by faculty discussing symptoms management, goals of care, or hospice referral with patients, and 56.7 % never received feedback on their palliative skills. CONCLUSION: The fellows rated the quality of their palliative care education as poor compared with other aspects of their fellowship training, implying the lack and need of palliative care teaching. Surgical oncology and HPB fellows and ultimately patients may benefit from increased clinical and didactic palliative care training.

Integration of palliative care into emergency medicine: the Improving Palliative Care in Emergency Medicine (IPAL-EM) collaboration.

BACKGROUND: Emergency department (ED) providers commonly care for seriously ill patients who suffer from advanced, chronic, life-limiting illnesses in addition to those that are acutely ill or injured. Both the chronically ill and those who present in extremis may benefit from application of palliative care principles. CASE REPORT: We present a case highlighting the opportunities and need for better integration of emergency medicine and palliative care. DISCUSSION: We offer practical guidelines to the ED faculty/administrators who seek to enhance the quality of patient care in their own unique ED setting by starting an initiative that better integrates palliative principles into daily practice. Specifically, we outline four things to do to jumpstart this collaborative effort. CONCLUSION: The Improving Palliative Care in Emergency Medicine project sponsored by the Center to Advance Palliative Care is a resource that assists ED health care providers with the process and structure needed to integrate palliative care into the ED setting.

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 out-of-hospital setting: four things to jump-start an EMS-palliative care initiative.

Emergency medical service (EMS) is frequently called to care for a seriously ill patient with a life-threatening or life-limiting illness. The seriously ill include both the acutely injured patients (for example in mass casualty events) and those who suffer from advanced stages of a chronic disease (for example severe malignant pain). EMS therefore plays an important role in delivering realistic, appropriate, and timely care that is consistent with the patient's wishes and in treating distressing symptoms in those who are seriously ill. The purpose of this article is to; 1) review four case scenarios that relate to palliative care and may be commonly encountered in the out-of-hospital setting and 2) provide a road map by suggesting four things to do to start an EMS-palliative care initiative in order to optimize out-of-hospital care of the seriously ill and increase preparedness of EMS providers in these difficult situations.

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.

Creative solution for implementation of experiential, competency-based palliative care training for internal medicine residents.

To graduate internal medicine residents with basic competency in palliative care, we employ a two-pronged strategy targeted at both residents and attending physicians as learners. The first prong provides a knowledge foundation using web-based learning programs designed specifically for residents and clinical faculty members. The second prong is assessment of resident competency in key palliative care domains by faculty members using direct observation during clinical rotations. The faculty training program contains Competency Assessment Tools addressing 19 topics distributed amongst four broad palliative care domains designed to assist faculty members in making the clinical competency assessments. Residents are required to complete their web-based training by the end of their internship year; they must demonstrate competency in one skill from each of the four broad palliative care domains prior to graduation. Resident and faculty evaluation of the training programs is favorable. Outcome-based measures are planned to evaluate long-term program effectiveness.

Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU).

OBJECTIVE: To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. DATA SOURCES: We searched the MEDLINE database from inception to April 2010 for all English language articles using the terms "intensive care," "critical care," or "ICU" and "palliative care"; we also hand-searched reference lists and author files. Based on review and synthesis of these data and the experiences of our interdisciplinary expert Advisory Board, we prepared this consensus report. DATA EXTRACTION AND SYNTHESIS: We critically reviewed the existing data with a focus on models that have been used to structure clinical initiatives to enhance palliative care for critically ill patients in intensive care units and their families. CONCLUSIONS: There are two main models for intensive care unit-palliative care integration: 1) the "consultative model," which focuses on increasing the involvement and effectiveness of palliative care consultants in the care of intensive care unit patients and their families, particularly those patients identified as at highest risk for poor outcomes; and 2) the "integrative model," which seeks to embed palliative care principles and interventions into daily practice by the intensive care unit team for all patients and families facing critical illness. These models are not mutually exclusive but rather represent the ends of a spectrum of approaches. Choosing an overall approach from among these models should be one of the earliest steps in planning an intensive care unit-palliative care initiative. This process entails a careful and realistic assessment of available resources, attitudes of key stakeholders, structural aspects of intensive care unit care, and patterns of local practice in the intensive care unit and hospital. A well-structured intensive care unit-palliative care initiative can provide important benefits for patients, families, and providers.

Spirituality training for palliative care fellows.

INTRODUCTION: Spirituality is a major domain of palliative medicine training. No data exist on how it is taught, nor is there a consensus about the content or methods of such education. We surveyed palliative medicine fellowship directors in the United States to learn how they teach spirituality, who does the teaching, and what they teach. METHODS: A PubMed () search using the terms "spirituality" and "medical education" was completed. Thirty-two articles outlined spirituality education content and methods in medical schools and residency programs. From these articles, a survey on spirituality education in palliative medicine fellowship training was prepared, pilot-tested, revised, and then distributed by e-mail in June 2004 to the 48 U.S. palliative medicine fellowship directors listed on the American Board of Hospice and Palliative Medicine (AAHPM) website, but excluding the three fellowship programs represented by the authors. Follow-up requests were sent by email twice during the 6-week collection period. The Institutional Review Board at the Medical College of Wisconsin approved the study. RESULTS: Fourteen fellowship directors completed the survey (29% of all programs; 42% of those currently teaching fellows as indicated on the AAHPM website). All programs indicated they taught "spirituality"; 12 of 14 had separate programs for teaching spirituality and 2 of 14 reported they taught spirituality to their fellows but not as a distinct, separate program. All respondents taught the definitions of spirituality and religion, common spiritual issues faced by patients at end of life (which was not defined further), and the role of chaplains and clergy. Chaplains provided spirituality education in all of the responding programs, but other team members were frequently involved. The most common formats for education in the domains of knowledge and attitudes were small group discussion, lecture, and self-study. Small group discussion, supervision, and shadowing a chaplain or other professional were the most common methods used for skills. Faculty written or oral evaluations of fellows were the most common forms of evaluation, with little evidence of more robust assessment methods, such as structured role-play (none of the programs surveyed). CONCLUSIONS: Palliative medicine fellowship programs generally agree on the content of training on spirituality, but have not incorporated robust educational and evaluation methods to ensure that fellows have obtained the desired attitudes, knowledge, and skills to meet the Initial Voluntary Program Standards for Residency Education in Palliative Medicine of the American Board of Hospice and Palliative Medicine. Based on the survey data and results from the literature review, broad recommendations are made to enhance spirituality education.

Management of thrombocytopenia in bone marrow failure: a review.

The clinical course of many neoplastic and primary bone marrow diseases will result in cytopenias secondary to bone marrow failure or infiltration. Acute and chronic leukemias, the myelodysplastic syndromes (MDS), aplastic anemia, breast and prostate cancer, as well as other hematologic and solid tumors, all may lead to chronic, severe cytopenias. Management of anemia and neutropenia are well described in the medical literature. Less well detailed are management approaches for patients with chronic thrombocytopenia, with or without active bleeding. Severe thrombocytopenia presents many difficult management choices for caregivers, patients and their families, especially near the end of life. The use of platelet transfusions in this patient population presents complex issues; platelets are logistically more difficult to transfuse than red cells and carry risks including acute febrile episodes, alloimmunization, and infection. In this review, we discuss the association of chronic thrombocytopenia to serious bleeding and the role of various prophylactic and therapeutic interventions available to palliative care and hospice providers. Specifically, this review examines the following issues: What is the morbidity and mortality from chronic thrombocytopenia in the setting of cancer or other bone marrow failure states? Is there a role for prophylactic platelet transfusions in the palliative care setting, and if so, with what frequency of monitoring, and at what transfusion threshold? What is the impact of alloimmunization and how can it be minimized? What treatments are available besides, or in addition to, platelet transfusions for acute bleeding episodes?

Outcomes from a national multispecialty palliative care curriculum development project.

BACKGROUND: In 1998 we completed a successful regional pilot project in palliative care curriculum development among 32 internal medicine residency programs recruited from the mid-western United States. Between 1999 and 2004 this project was expanded to include 358 U.S. programs, from four specialties, based on new training requirements in internal medicine, family medicine, neurology, and general surgery. OBJECTIVE: To assess the 1-year outcomes from residency programs participating in a national multispecialty palliative care curriculum development project. MEASUREMENT: Outcome data obtained from residency programs' responses to a structured progress report 12 months after enrolling in the project and from published residency project reports. RESULTS: Three hundred fifty-eight residency programs, representing 27% of all eligible training programs in the four specialties, participated in the project. Outcome data was available from 224 residencies (63%). Most programs started new teaching in pain, non-pain symptom management, and communication skills. More than 50% of programs integrated palliative care topics within established institutional grand rounds, morbidity/mortality conferences or morning report. More than 70% of internal medicine and family practice programs began new direct patient care training opportunities utilizing hospital-based palliative care or hospice programs. New faculty development initiatives and use of quality improvement projects to drive curriculum change were reported in less than 50% of programs. CONCLUSIONS: Focused short-term instruction in palliative care curriculum development, in a diverse group of residency programs, is feasible and associated with significant curriculum change.

Care of the Critically Ill Burn Patient. An Overview from the Perspective of Optimizing Palliative Care.

Burn specialists have long recognized the need for and have role modeled a comprehensive approach incorporating relief of distress as part of care during critical illness. More recently, palliative care specialists have become part of the healthcare team in many U.S. hospitals, especially larger academic institutions that are more likely to have designated burn centers. No current literature describes the intersection of palliative care and burn care or integration of primary and specialist palliative care in this unique context. This Perspective gives an overview of burn care; focuses on pain and other symptoms in burn intensive care unit settings; addresses special needs of critically ill burned patients, their families, and clinicians for high-quality palliative care; and highlights potential benefits of integrating primary and specialist palliative care in burn critical care. MEDLINE and the Cumulative Index to Nursing and Allied Health Literature were searched, and an e-mail survey was used to obtain information from U.S. Burn Fellowship Program directors about palliative medicine training. The Improving Palliative Care in the Intensive Care Unit Project Advisory Board synthesized published evidence with their own research and clinical experience in preparing this article. Mortality and severe morbidity for critically ill burned patients remains high. American Burn Association guidelines lay the foundation for a robust system of palliative care delivery, embedding palliative care principles and processes in intensive care by burn providers. Understanding basic burn care, challenges for symptom management and communication, and the culture of the particular burn unit, can optimize quality and integration of primary and specialist palliative care in this distinctive setting.

Education in palliative care.

Palliative care education includes the domains of pain and nonpain symptom management, communications skills, ethics and law, psychosocial care, and health systems. Defining key attitudes, knowledge, and skill objectives, and matching these to appropriate learning formats, is essential in educational planning. Abundant educational resource material is available to support classroom and experiential palliative care training.

Training of palliative medicine fellows: a report from the field.

BACKGROUND: The escalating demand for palliative care physicians has led to the proliferation of postgraduate fellowship programs to train physicians in the United States and Canada. There is currently little data regarding the extent to which clinical, research, educational or administrative skills and competencies have been incorporated into fellowship training. OBJECTIVE: The survey aims were to describe: (1) fellows' interests and relative priorities for receiving training in the clinical, educational, research, and administrative aspects of palliative medicine; (2) quantity of training received in each area; (3) fellows' satisfaction with the teaching received in each area; (4) post-fellowship employment experiences. DESIGN: A survey was conducted via mail and in person, with e-mail utilized for reminders. SETTING/SUBJECTS: All palliative medicine fellows from the United States and Canada between 1997 and 2002 were surveyed. MEASUREMENTS: The survey instrument was based on a Health Resources Services Administration (HRSA) survey designed to assess research fellows' educational experiences and training satisfaction and modified to ensure sufficient focus on clinical, education, research and administrative activities; specific palliative medicine content was added. RESULTS: One hundred one fellows from 24 programs were identified; contact information was obtained from program directors for 89 fellows (88%). Sixty-seven valid surveys were received for a response rate of 75%; 22 programs (14 U.S., 8 Canadian, 92% of active fellowships) are represented. The vast majority of fellows (94%) identified clinical training as very important; 63% identified educational training as important and only few (33% and 21%, respectively) identified research or administrative training as very important. Fellows reported receiving less training on research and administrative topics than they did on clinical or educational topics. Sixty-eight percent of fellows reported spending 10% or less of their time on research activities, and subsequently fellows reported low levels of research competence. Fellows were very satisfied with their clinical training (mean rating = 4.51 on a 5-point scale), intermediately satisfied with their educational training (mean rating = 3.61) and less with their research (mean rating = 3.1) and administrative training (mean rating = 2.24). The largest proportion of fellows (73%) described their first post fellowship position as "clinician/educator" or "full time clinician"; only 14% were "clinician/researchers." CONCLUSION: Clinical training appears to be both the focus and strength of most palliative care fellowships surveyed. Fellows appear less interested in educational, research, and administrative training and programs appear to be less focused on these aspects of palliative medicine. Fellows also express a lower level of satisfaction with their training in these areas. The scope of fellowship programs must broaden to provide fellows opportunities to develop the research, education and administrative skills necessary to strengthen the research base of the field and provide academic leadership for the future.

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.

Opioid pseudoaddiction--an iatrogenic syndrome.

A case is presented of a 17-year-old with leukemia, pneumonia and chest-wall pain. Inadequate treatment of the patient's pain led to behavioral changes similar to those seen with idiopathic opioid psychologic dependence (addiction). The term pseudoaddiction is introduced to describe the iatrogenic syndrome of abnormal behavior developing as a direct consequence of inadequate pain management. The natural history of pseudoaddiction includes progression through 3 characteristic phases including: (1) inadequate prescription of analgesics to meet the primary pain stimulus, (2) escalation of analgesic demands by the patient associated with behavioral changes to convince others of the pain's severity, and (3) a crisis of mistrust between the patient and the health care team. Treatment strategies include establishing trust between the patient and the health care team and providing appropriate and timely analgesics to control the patient's level of pain.

Patient-related barriers to management of cancer pain.

Patients' reluctance to report pain and to use analgesics are considered major barriers to pain management. To explore this problem, 270 patients with cancer completed a 27-item self-report questionnaire (BQ) that assessed the extent to which they have concerns about reporting pain and using pain medication. The 8 specific concerns included fear of addiction, beliefs that 'good' patients do not complain about pain, and concern about side effects. Patients also completed a measure of pain severity and pain interference (the BPI). The percentages of patients having concerns assessed by the BQ ranged from 37% to 85%. Those who were older, less educated, or had lower incomes were more likely to have concerns. Higher levels of concern were correlated with higher levels of pain. Based on their reports of pain medications used in the past week and on their reports of pain severity, patients were categorized as under-medicated versus adequately medicated. Those who were under-medicated reported significantly higher levels of concern. The data are discussed in terms of implications for research and practice.

ACGME requirements for end-of-life training in selected residency and fellowship programs: a status report.

INTRODUCTION: National recommendations have been developed for physicians' end-of-life (EOL) education. No comprehensive assessment has been done to examine postgraduate (residency and fellowship) EOL training. METHOD: The authors reviewed the EOL content for 46 specialties in postgraduate training programs that affect the care of seriously ill and dying patients, using data from the 2000/2001 AMA Graduate Medical Education Directory. RESULTS: Internal medicine, geriatrics, and neurology contained the most comprehensive EOL requirements. Most surgical specialties contained no EOL requirement except ethics. Ethics (n = 25) and psychosocial care (n = 22) were the most common EOL domains mandated, although specific EOL content was not specified. Training in EOL communication (n = 1), personal awareness (n = 3), and EOL clinical experiences (n = 5) were the least often required instructional domains. Instruction in pain assessment and management was required in only one surgical specialty. CONCLUSIONS: The lack of comprehensive EOL training requirements may help explain the known problems in physicians' EOL care. Major reform in EOL requirements is needed at the level of residency review committees.