Development and validation of a novel informational booklet for pediatric long-term ventilation decision support
children; noninvasive ventilation; tracheostomy; mechanical ventilation; decision making shared; respiration artificial
OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics. RESULTS: The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity. CONCLUSIONS: The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.
Edwards JD; Panitch HB; George M; Cirrilla AM; Grunstein E; Wolfe J; Nelson JE; Miller RL
Pediatric Pulmonology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.25221" target="_blank" rel="noreferrer noopener">10.1002/ppul.25221</a>
Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board
OBJECTIVE: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU. DATA SOURCES: We searched the MEDLINE database from inception to January 2014 for English-language articles using the terms "palliative care" or "end of life care" or "supportive care" and "pediatric intensive care." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website. STUDY SELECTION: Two authors (physicians with experience in pediatric intensive care and palliative care) made final selections. DATA EXTRACTION: We critically reviewed the existing data and tools to identify strategies for incorporating palliative care into the PICU. DATA SYNTHESIS: The Improving Palliative Care in the ICU Advisory Board used data and experience to address key questions relating to: pain and symptom management, enhancing quality of life, communication and decision-making, length of stay, sites of care, and grief and bereavement. CONCLUSIONS: Palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions.
2014-10
Boss R; Nelson JE; Weissman DE; Campbell M; Curtis Randall; Frontera J; Gabriel M; Lustbader DR; Mosenthal A; Mulkerin C; Puntillo KA; Ray DE; Bassett R; Brasel K; Hays R
Pediatric Critical Care Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/PCC.0000000000000209" target="_blank" rel="noreferrer">10.1097/PCC.0000000000000209</a>
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)
Humans; Palliative Care; Critical Care; Models; ICU Decision Making; Organizational
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.
2010-09
Nelson JE; Bassett R; Boss RD; Brasel KJ; Campbell ML; Cortez TB; Curtis JR; Lustbader DR; Mulkerin C; Puntillo KA; Ray DE; Weissman DE; Improve Palliative Care in the Intensive Care Unit Project
Critical Care Medicine
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/CCM.0b013e3181e8ad23" target="_blank" rel="noreferrer">10.1097/CCM.0b013e3181e8ad23</a>
Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback
Humans; United States; Pain Measurement; Professional-Family Relations; Cooperative Behavior; Communication; Pilot Projects; Program Development; Patient Satisfaction; Spirituality; Hospitals; Proxy; Feedback; decision making; Health Care; Quality Assurance; Health Care/organization & administration; Quality Indicators; Palliative Care/psychology/standards; Intensive Care Units/standards; Critical Care/psychology/standards; Voluntary/organization & administration/standards
OBJECTIVE: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). DESIGN: Use of an interdisciplinary iterative process to create a prototype "bundle" of indicators within previously established domains of ICU palliative care quality; operationalization of indicators as specified measures; and pilot implementation to evaluate feasibility and baseline ICU performance. SETTING: The national Transformation of the Intensive Care Unit program developed in the United States by VHA Inc. PATIENTS: Critically ill patients in ICUs for 1, > 3, and > 5 days. MEASUREMENTS AND MAIN RESULTS: Palliative care processes including identification of patient preferences and decision making surrogates, communication between clinicians and patients/families, social and spiritual support, and pain assessment and management, as documented in medical records. Application is triggered by specified lengths of ICU stay. Pilot testing in 19 ICUs (review of > 100 patients' records) documented feasibility, while revealing opportunities for quality improvement in clinician-patient/family communication and other key components of ICU palliative care. CONCLUSIONS: The new bundle of measures is a prototype for routine measurement of the quality of palliative care in the ICU. Further investigation is needed to confirm associations between measured processes and outcomes of importance to patients and families, as well as other aspects of validity.
2006
Nelson JE; Mulkerin CM; Adams LL; Pronovost PJ
Quality & Safety in Health Care
2006
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Journal Article
<a href="http://doi.org/10.1136/qshc.2005.017707" target="_blank" rel="noreferrer">10.1136/qshc.2005.017707</a>
Decisions around long-term ventilation for children: Perspectives of directors of pediatric home ventilation programs
Artificial Ventilation; Shared Decision Making; Child; Data Analysis; Female; Human; Human Experiment; Male; North America; Physician; Semi Structured Interview; Stress
Rationale: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. Objectives: To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. Methods: Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. Results: A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources. Conclusions: As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.
Edwards JD; Morris MC; Nelson JE; Panitch HB; Miller RL
Annals Of The American Thoracic Society
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a></a> <a href="http://doi.org/10.1513/AnnalsATS.201612-1002OC" target="_blank" rel="noreferrer">10.1513/AnnalsATS.201612-1002OC</a>