2024
Delayed Withdrawal of Life-Sustaining Treatment in Disorders of Consciousness: Practical and Theoretical Considerations
Williams A, Bass G, Hampton S, Klinedinst R, Giacino J, Fischer D. Delayed Withdrawal of Life-Sustaining Treatment in Disorders of Consciousness: Practical and Theoretical Considerations. Neurocritical Care 2024, 1-10. PMID: 39407075, DOI: 10.1007/s12028-024-02143-7.Peer-Reviewed Original ResearchWithdrawal of life-sustaining treatmentPatient's recovery trajectorySurrogate decision makersSurrogates of patientsPost-acute-care facilityAcute care cliniciansLife-sustaining treatmentDisorders of consciousnessQuality of lifeNeurological recoveryCare cliniciansPsychosocial factorsSevere acute brain injuryAcute time periodAcceptable quality of lifeHospital dischargeRecovery trajectoriesCliniciansPost-injuryBrain injuryNeurological prognosisDecision-makingPatientsPreestablished goalsInjuryParent decisional regret regarding neonatal circumcision in an American outpatient pediatric urology clinic
Brutus N, Howe A, Rehfuss A, Giramonti K, Feustel P, Kogan B. Parent decisional regret regarding neonatal circumcision in an American outpatient pediatric urology clinic. Journal Of Pediatric Urology 2024, 20: 1192-1199. PMID: 39153922, DOI: 10.1016/j.jpurol.2024.07.018.Peer-Reviewed Original ResearchDecisional Regret ScalePediatric urology clinicRegret scoresModerate to strong regretNeonatal circumcisionUrology clinicCircumcision statusSurrogate decision makersRecruitment of participantsParent groupsParental decisional regretPhysician counselingDecisional regretParental regretStrong regretSurveyed parentsRegret ScaleIndependent decision makingCircumcision revisionOutcome variablesDecision makingPopulation studiesUncircumcised penisParental decisionsMedian 0
2023
Easing Suffering for ICU Patients and Their Families: Evidence and Opportunities for Primary and Specialty Palliative Care in the ICU
Doherty C, Feder S, Gillespie-Heyman S, Akgün K. Easing Suffering for ICU Patients and Their Families: Evidence and Opportunities for Primary and Specialty Palliative Care in the ICU. Journal Of Intensive Care Medicine 2023, 39: 715-732. PMID: 37822226, DOI: 10.1177/08850666231204305.Peer-Reviewed Original ResearchSurrogate decision makersPalliative needsCritical illnessICU patientsPalliative medicineIntensive care unit admissionChronic critical illnessPalliative medicine teamsPost-ICU disabilitySpecialty palliative careCare unit admissionTransitions of careImprovement of patientsAdvanced practice nursesFamily-centered carePerson-centred careUnit admissionICU carePalliative supportPalliative carePractice nursesPalliative principlesMedicine teamPatientsICU
2021
Palliative Care for Patients on Extracorporeal Membrane Oxygenation for COVID-19 Infection
Rao A, Zaaqoq AM, Kang IG, Vaughan EM, Flores J, Avila-Quintero VJ, Alnababteh MH, Kelemen AM, Groninger H. Palliative Care for Patients on Extracorporeal Membrane Oxygenation for COVID-19 Infection. American Journal Of Hospice And Palliative Medicine® 2021, 38: 854-860. PMID: 33685240, PMCID: PMC7944020, DOI: 10.1177/10499091211001009.Peer-Reviewed Original ResearchConceptsExtracorporeal membrane oxygenationPalliative care consultationCOVID-19 infectionPalliative care teamYears of ageCare consultationsPalliative careMembrane oxygenationIll patientsHigh morbidityCare teamNon-pain symptom managementOdds of deathPatients/familiesRates of anxietyAcademic medical centerSurrogate decision makersSymptom controlPatient characteristicsPain managementCase seriesClinical outcomesSymptom managementMedical complexityMedical CenterPredictors of Surrogate Decision Makers Selecting Life-Sustaining Therapy for Severe Acute Brain Injury Patients: An Analysis of US Population Survey Data
Garg A, Soto AL, Knies AK, Kolenikov S, Schalk M, Hammer H, White DB, Holloway RG, Sheth KN, Fraenkel L, Hwang DY. Predictors of Surrogate Decision Makers Selecting Life-Sustaining Therapy for Severe Acute Brain Injury Patients: An Analysis of US Population Survey Data. Neurocritical Care 2021, 35: 468-479. PMID: 33619667, PMCID: PMC8380750, DOI: 10.1007/s12028-021-01200-9.Peer-Reviewed Original ResearchConceptsSevere acute brain injuryAcute brain injuryLife-sustaining treatmentSurrogate decision makersBrain injuryAcute brain injury patientsPatient's surrogate decision makersSevere disabilityPoor neurological prognosisIntensive care unitSevere brain injuryLife-Sustaining TherapyBrain injury patientsCost of careYounger age groupsCross-sectional survey studyUS population sampleBinary logistic regressionNeurological prognosisIndependent predictorsCare unitInjury patientsPoor prognosisMale genderUnivariate analysis
2020
End-of-Life Care for Persons Under Guardianship
Moye J, Stolzmann K, Auguste EJ, Cohen AB, Catlin CC, Sager ZS, Weiskittle RE, Woolverton CB, Connors HL, Sullivan JL. End-of-Life Care for Persons Under Guardianship. Journal Of Pain And Symptom Management 2020, 62: 81-90.e2. PMID: 33212143, PMCID: PMC8124075, DOI: 10.1016/j.jpainsymman.2020.11.008.Peer-Reviewed Original ResearchConceptsPalliative care consultationVeterans Health AdministrationLife careCare consultationsHealth AdministrationIntensive care unit careIntensive care unitTransitions of careVeterans Healthcare AdministrationQuality of endHealth care challengesSurrogate decision makersSample of personsICU admissionUnit careCare unitAdverse outcomesPalliative careExtended lengthQuality endCareComparison groupHealth carePatient narrativesAdministrationConcerns of surrogate decision makers for patients with acute brain injury: A US population survey.
Hwang DY, Knies AK, Mampre D, Kolenikov S, Schalk M, Hammer H, White DB, Holloway RG, Sheth KN, Fraenkel L. Concerns of surrogate decision makers for patients with acute brain injury: A US population survey. Neurology 2020, 94: e2054-e2068. PMID: 32341190, PMCID: PMC7282883, DOI: 10.1212/wnl.0000000000009406.Peer-Reviewed Original ResearchConceptsSevere acute brain injurySevere functional disabilityAcute brain injurySurrogate decision makersBrain injuryLatent class analysisPatient's wishesVegetative stateLong-term careFunctional disabilityPoor prognosisUS population surveySD groupPrognostic accuracyHypothetical patientsPatientsUS populationAdditional groupOlder adultsFuture interventionsCompletion ratesInjuryFamily consensusPopulation surveyUnique concerns
2019
Psychological Attachment Styles of Surrogate Decision Makers and Neuro ICU Goals-of-Care Decisions (P2.6-052)
Juthani P, Knies A, Martinez A, Pach J, Kimbrough T, Tu S, Hwang D. Psychological Attachment Styles of Surrogate Decision Makers and Neuro ICU Goals-of-Care Decisions (P2.6-052). Neurology 2019, 92 DOI: 10.1212/wnl.92.15_supplement.p2.6-052.Peer-Reviewed Original ResearchPsychological attachment stylesAttachment styleSurrogate decision makersStyleDecision makersCare decisions
2018
Increasing engagement in advance care planning using a behaviour change model: study protocol for the STAMP randomised controlled trials
Fried TR, Redding CA, Martino S, Paiva A, Iannone L, Zenoni M, Blakley LA, Rossi JS, O'Leary J. Increasing engagement in advance care planning using a behaviour change model: study protocol for the STAMP randomised controlled trials. BMJ Open 2018, 8: e025340. PMID: 30099405, PMCID: PMC6089328, DOI: 10.1136/bmjopen-2018-025340.Peer-Reviewed Original ResearchConceptsAdvance care planningUsual careCare planningACP engagementAppropriate Institutional Review BoardSafety Monitoring CommitteeComputer-tailored feedbackMotivational enhancement therapySurrogate decision makersInstitutional review boardHigh-quality endBehavior changePrimary outcomeEligible participantsPrimary careMedical recordsOutpatient practiceLife careVA sitesRandomisationEnhancement therapyMonitoring committeeReview boardCommunity studyBehavior change modelsPalliative Care Competencies and Readiness for Independent Practice: A Report on the American Academy of Hospice and Palliative Medicine Review of the U.S. Medical Licensing Step Examinations
Carey EC, Paniagua M, Morrison LJ, Levine SK, Klick JC, Buckholz GT, Rotella J, Bruno J, Liao S, Arnold RM. Palliative Care Competencies and Readiness for Independent Practice: A Report on the American Academy of Hospice and Palliative Medicine Review of the U.S. Medical Licensing Step Examinations. Journal Of Pain And Symptom Management 2018, 56: 371-378. PMID: 29935969, DOI: 10.1016/j.jpainsymman.2018.06.006.Peer-Reviewed Original ResearchConceptsPC itemsHeart diseasePC knowledgeEnd-stage heart diseasePalliative care competenciesPalliative care contentSubstance use disordersSurrogate decision makersMultimorbid illnessesPC competenciesPain managementMedicine ReviewsSymptom managementPC physiciansCare competenciesUse disordersAmerican AcademyCare contentMultiple-choice questionsCompetency domainsLicensed physiciansExamination formPatient autonomyPatientsOne-third
2015
Guardianship and End-of-Life Decision Making
Cohen AB, Wright MS, Cooney L, Fried T. Guardianship and End-of-Life Decision Making. JAMA Internal Medicine 2015, 175: 1687-1691. PMID: 26258634, PMCID: PMC4683611, DOI: 10.1001/jamainternmed.2015.3956.Peer-Reviewed Original ResearchConceptsLegal casesProfessional guardiansLife decisionsRecent legal casesImpaired decision-making capacityDecision-making capacityLife-sustaining treatmentJudicial reviewGuardian's authoritySurrogate decision makersVulnerable personsComprehensive standardsGuardiansAuthoritiesStatutesBroader frameworkPreexisting relationshipDecisionsLife treatmentMedical decisionsSuch situationsCourtGuardianshipLawRights
2013
Disorders of Consciousness and Disordered Care: Families, Caregivers, and Narratives of Necessity
Fins J. Disorders of Consciousness and Disordered Care: Families, Caregivers, and Narratives of Necessity. Archives Of Physical Medicine And Rehabilitation 2013, 94: 1934-1939. PMID: 23770277, DOI: 10.1016/j.apmr.2012.12.028.Peer-Reviewed Original ResearchConceptsAmerican health care systemAcute care needsSurrogate decision makersHealth care systemDisorders of consciousnessAffordable Care ActDecision-making capacityCare needsSevere disorders of consciousnessCare decisionsOngoing careCare systemReimbursement frameworkCare ActReimbursement strategiesCareMedical necessityCivil rightsMedical infrastructureRehabilitationEthical challengesReimbursementSevere disordersCaregiversPatients
2011
Palliative Care and Decision Making at the End of Life
Perkal M. Palliative Care and Decision Making at the End of Life. 2011, 197-209. DOI: 10.1007/978-1-4419-6999-6_16.Peer-Reviewed Original ResearchModerate left-sided pleural effusionLeft-sided pleural effusionLower quadrant painLeft lower lobeBenefits of surgerySurrogate decision makersEarly satietyQuadrant painBowel movementsEnd of lifeMild shortnessAbdominal girthPleural effusionSurgery clinicLower lobePalliative careUmbilical herniaComputerized tomographyMild increasePainAtelectasisHerniaSurgeryEffusionLiposarcoma
2010
Redefining the "planning" in advance care planning: preparing for end-of-life decision making.
Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Annals Of Internal Medicine 2010, 153: 256-61. PMID: 20713793, PMCID: PMC2935810, DOI: 10.7326/0003-4819-153-4-201008170-00008.Peer-Reviewed Original Research
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