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>
Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey
Palliative Care; hospice care; Palliative Care; Pediatric; survey; Hospital care
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their number, staff composition, services offered, sources of support, or national distribution. METHODS: In the summer of 2012, we surveyed 226 hospitals as identified by the National Association of Children’s Hospitals and Related Institutions. The survey instrument gathered data about whether their institution had a PPC program, and for hospitals with programs, it asked for a wide range of information including staffing, patient age range, services provided, and financial support. RESULTS: Of the 162 hospitals that provided data (71.7% response rate), 69% reported having a PPC program. The rate of new program creation peaked in 2008, with 12 new programs created that year, and 10 new programs in 2011. Most programs offer only inpatient services, and most only during the work week. The number of consults per year varied substantially across programs, and was positively associated with hospital bed size and number of funded staff members. PPC programs report a high level of dependence on hospital funding. CONCLUSIONS: PPC programs are becoming common in children’s hospitals throughout the United States yet with marked variation in how these programs are staffed, the level of funding for staff effort to provide PPC, and the number of consultations performed annually. Guidelines for PPC team composition, funding, and consultation standards may be warranted to ensure the highest quality of PPC.
2013-11
Feudtner C; Womer JW; Augustin R; Remke S; Wolfe J; Friebert SE; Weissman DE
Pediatrics
2013
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-1286" target="_blank" rel="noreferrer">10.1542/peds.2013-1286</a>
Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations
Humans; Palliative Care; referral and consultation; Consensus; Practice Guidelines as Topic; Length of Stay; Wisconsin; Demography; Palliative Care; Biometry; Community Health Centers; Essential Data Set
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on the topic of operational metrics for consultation services. Operational metrics, as distinct from clinical, customer and financial metrics, describe the characteristics of patients seen on the consultation service, such as age, disease, location, referring service and disposition. The panel arrived at 12 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care consultation teams are encouraged to collect and report outcomes for each of the twelve metric domains described here.
2008-12
Weissman DE; Meier DE; Spragens LH
Journal Of Palliative Medicine
2008
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Journal Article
<a href="http://doi.org/10.1089/jpm.2008.0178" target="_blank" rel="noreferrer">10.1089/jpm.2008.0178</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>
Choosing an opioid combination product #51
Humans; Drug Therapy; Combination; Narcotics/administration & dosage/adverse effects/economics/therapeutic use
2005
Weissman DE
Journal Of Palliative Medicine
2005
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/10.1089/jpm.2005.8.867" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.867</a>
Pediatric Palliative Care
Child; Humans; Grief; Religion; Death and Euthanasia; Terminally Ill/psychology; hospice care; Pediatrics/methods; Palliative Care/ethics/methods/psychology
Each year in the United States, approximately 50,000 children die and 500,000 children cope with life-threatening conditions. Worldwide these numbers are in the millions.1,2 Such children and their families require comprehensive, compassionate, and developmentally appropriate palliative care. Palliative care is a philosophy of care that evolved from the hospice philosophy to meet the gaps in care for seriously ill and dying patients. The aims of pediatric palliative care should best intersect with the aims of curing and healing, and this approach should be instituted when diagnosis, intervention, and treatment are not limited to a disease process, but rather become . . .
2004-04
Himelstein BP; Hilden JM; Boldt AM; Weissman DE
New England Journal Of Medicine
2004
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Journal Article
<a href="http://doi.org/10.1056/NEJMra030334" target="_blank" rel="noreferrer">10.1056/NEJMra030334</a>
Discussing do-not-resuscitate orders in the hospital setting: Part 1
Hospitalization; Communication; decision making; Human; Resuscitation Orders; Terminal Care; Patient Education; Patient Participation
2002
von Gunten CF; Weissman DE
Journal Of Palliative Medicine
2002
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
Discussing do-not-resuscitate orders in the hospital setting: Part 2
Medical Futility; Human; Resuscitation Orders; Emotions
2002
von Gunten CF; Weissman DE
Journal Of Palliative Medicine
2002
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
Fast fact and concepts #107: Controlled sedation for refractory symptoms: Part II
Analgesics; Analgesia/methods; Anesthesia/methods
This fact fact will review sedation techniques.
2004
Salacz ME; Weissman DE
2004
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Journal Article
Doctors, nurses, and storytelling
2000
Weissman DE
Journal Of Palliative Medicine
2000
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/10.1089/jpm.2000.3.251" target="_blank" rel="noreferrer">10.1089/jpm.2000.3.251</a>