Communicating Prognosis With Parents Of Critically Ill Infants: Direct Observation Of Clinician Behaviors
Creator
Boss RD; Lemmon M E; Arnold RM; Donohue PK
Identifier
DOI: 10.1038/jp.2017.118
Publisher
Journal Of Perinatology : Official Journal Of The California Perinatal Association
Date
2017
Description
OBJECTIVE: Delivering prognostic information to families requires clinicians to forecast an infant's illness course and future. We lack robust empirical data about how prognosis is shared and how that affects clinician-family concordance regarding infant outcomes. STUDY DESIGN: Prospective audiorecording of neonatal intensive care unit family conferences, immediately followed by parent/clinician surveys. Existing qualitative analysis frameworks were applied. RESULTS: We analyzed 19 conferences. Most prognostic discussion targeted predicted infant functional needs, for example, medications or feeding. There was little discussion of how infant prognosis would affect infant/family quality of life. Prognostic framing was typically optimistic. Most parents left the conference believing their infant's prognosis to be more optimistic than did clinicians. CONCLUSIONS: Clinician approach to prognostic disclosure in these audiotaped family conferences tended to be broad and optimistic, without detail regarding implications of infant health for infant/family quality of life. Families and clinicians left these conversations with little consensus about infant prognosis.Journal of Perinatology advance online publication, 27 July 2017; doi:10.1038/jp.2017.118.
Rights
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).
Citation List Month
September 2017 List
Notes
Using Smart Source Parsing Jul doi: 1038/jp.2017
]]>https://pedpalascnetlibrary.omeka.net/items/show/10566
Review all live births 22 0/7 through 26 6/7 weeks gestation born 1996 through 2013 at our institution to describe the decision process and immediate outcomes of palliative comfort care (PCC) versus neonatal intensive care (NICU) and whether any significant family complaints or quality assurance concerns arose.
STUDY DESIGN:
Retrospective chart review, physician and ethicist interview process and database review focused upon our established periviability counseling guidelines that are directive of PCC at 22 weeks gestation and NICU at 26 weeks but supportive of informed family choice of either option at 23, 24 and 25 weeks.
RESULT:
At 22 weeks--all 54 infants had PCC; at 23 weeks--29/78 (37%) chose NICU care, 6/29 (21%) infants survived; at 24 weeks--79/108 (73%) chose NICU care, 47/79 (59%) survived; at 25 weeks--147/153 (96%) chose NICU care, 115/147 (78%) survived; and at 26 weeks--all infants had NICU care, 176/203 (87%) survived. Over 18 years and 606 births, we identified only three significant concerns from families and/or physicians that required formal review.
CONCLUSION:
Most pregnant women and families choose NICU care for their extremely premature infant, but if given the option via shared decision making, a significant proportion will choose PCC at gestational ages that some NICUs mandate resuscitation. We support a reasoned dialogue and bioethical framework that recognizes human values to be irreducibly diverse, sometimes conflicting, and ultimately incommensurable--value pluralism. Respectful shared decision making requires thoughtful and compassionate flexibility, nuanced and individualized suggestions for PCC or NICU and the reduction of hierarchical directives from physicians to families. We continue to advocate and rely upon informed family preference between 23 and 25 weeks gestation in our updated 2015 periviability guidelines.]]>2023-02-23T17:20:39-05:00
Title
Extremely Premature Birth And The Choice Of Neonatal Intensive Care Versus Palliative Comfort Care: An 18-year Single- Center Experience.
Creator
Kaempf JW; Tomlinson MW; Tuohey J
Identifier
DOI: 10.1038/jp.2015.171
Publisher
Journal Of Perinatology : Official Journal Of The California Perinatal Association
OBJECTIVE:
Review all live births 22 0/7 through 26 6/7 weeks gestation born 1996 through 2013 at our institution to describe the decision process and immediate outcomes of palliative comfort care (PCC) versus neonatal intensive care (NICU) and whether any significant family complaints or quality assurance concerns arose.
STUDY DESIGN:
Retrospective chart review, physician and ethicist interview process and database review focused upon our established periviability counseling guidelines that are directive of PCC at 22 weeks gestation and NICU at 26 weeks but supportive of informed family choice of either option at 23, 24 and 25 weeks.
RESULT:
At 22 weeks--all 54 infants had PCC; at 23 weeks--29/78 (37%) chose NICU care, 6/29 (21%) infants survived; at 24 weeks--79/108 (73%) chose NICU care, 47/79 (59%) survived; at 25 weeks--147/153 (96%) chose NICU care, 115/147 (78%) survived; and at 26 weeks--all infants had NICU care, 176/203 (87%) survived. Over 18 years and 606 births, we identified only three significant concerns from families and/or physicians that required formal review.
CONCLUSION:
Most pregnant women and families choose NICU care for their extremely premature infant, but if given the option via shared decision making, a significant proportion will choose PCC at gestational ages that some NICUs mandate resuscitation. We support a reasoned dialogue and bioethical framework that recognizes human values to be irreducibly diverse, sometimes conflicting, and ultimately incommensurable--value pluralism. Respectful shared decision making requires thoughtful and compassionate flexibility, nuanced and individualized suggestions for PCC or NICU and the reduction of hierarchical directives from physicians to families. We continue to advocate and rely upon informed family preference between 23 and 25 weeks gestation in our updated 2015 periviability guidelines.
Rights
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).
Citation List Month
March 2016 List
]]>https://pedpalascnetlibrary.omeka.net/items/show/10614
Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.
STUDY DESIGN:
We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal.
RESULT:
No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents' values and preferences in the process.
CONCLUSION:
A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.]]>2023-02-23T17:20:40-05:00
Title
Shared Decision Making For Infants Born At The Threshold Of Viability: A Prognosis-based Guideline
Creator
Lemyre B; Daboval T; Dunn S; Kekewich M; Jones G; Wang D; Mason-Ward M; Moore GP
Publisher
Journal Of Perinatology : Official Journal Of The California Perinatal Association
Date
2016
Description
OBJECTIVE:
Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.
STUDY DESIGN:
We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal.
RESULT:
No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents' values and preferences in the process.
CONCLUSION:
A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.
Rights
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).
Citation List Month
May 2016 List
]]>https://pedpalascnetlibrary.omeka.net/items/show/10568
Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.
STUDY DESIGN:
Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan and staff education.
RESULT:
Eighty-two infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar (88% vs 81%; P =0.17), whereas benzodiazepines use increased in Era 2 (26% vs 43%; P=0.03). Withdrawal of life support (73% vs 63%; P=0.17) and do-not-resuscitate orders (46% vs 53%; P=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared with infants without activated orders (n=47).
CONCLUSION:
End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication.]]>2023-02-23T17:20:39-05:00
Title
Impact Of A Palliative Care Program On End-of- Life Care In A Neonatal Intensive Care Unit.
Creator
Younge N; Smith PB; Goldberg RN; Brandon D; Simmons C; Cotten CM
Identifier
DOI: 10.1038/jp.2014.193
Publisher
Journal Of Perinatology : Official Journal Of The California Perinatal Association
Date
2016
Subject
Benzodiazepines/therapeutic Use; Cause Of Death; Female; Humans; Infant; Infant Death; Infant Newborn; Intensive Care Units Neonatal/organization & Administration; Male; Morphine/therapeutic Use; Palliative Care; Resuscitation Orders; Retrospective Studies; Terminal Care; Withholding Treatment/trends
Description
OBJECTIVE:
Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.
STUDY DESIGN:
Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan and staff education.
RESULT:
Eighty-two infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar (88% vs 81%; P =0.17), whereas benzodiazepines use increased in Era 2 (26% vs 43%; P=0.03). Withdrawal of life support (73% vs 63%; P=0.17) and do-not-resuscitate orders (46% vs 53%; P=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared with infants without activated orders (n=47).
CONCLUSION:
End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication.
Rights
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).