Perspectives on anticipated quality-of-life and recommendations for neonatal intensive care: a survey of neonatal providers

Salmeen, Kirsten; Janvier, Annie; Sayeed, Sadath; Drey, Eleanor A.; Lantos, John D.; Partridge, John Colin

doi:10.3109/14767058.2014.957668

Cited by 5 publications

(7 citation statements)

References 27 publications

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“…Finally, attitudes toward quality of life constitute an important value‐laden, but very real, practical concern. Data suggest that expectations of quality of life from physicians are associated with their recommendation about life‐sustaining intervention . Studies have shown that physicians underestimate the outcomes for neonates .…”

Section: The ‘Our‐hope’ Approachmentioning

confidence: 99%

“…There is an impressive body of research reporting differences in parent, child, and clinician ratings about quality of life, often showing a more pessimistic outlook by clinicians (e.g. the disability paradox) . However, the ratings of quality of life by parents are not always higher than physicians .…”

Section: The ‘Our‐hope’ Approachmentioning

confidence: 99%

“…25 Studies have shown that physicians underestimate the outcomes for neonates. 7,25,26 Some have pointed out that 'among physicians, even pediatricians expect less favorable outcomes for premature babies than published national rates of survival and freedom from handicap'. 7 Such attitudes could negatively affect attitudes toward resource allocation for neonatal neurological care.…”

Section: Relevancementioning

confidence: 99%

“…the disability paradox). 7,25,[74][75][76][77] However, the ratings of quality of life by parents are not always higher than physicians. 77 It is possible that there are greater differentials in assessing subjective factors (e.g.…”

Section: Relevancementioning

confidence: 99%

“…Data suggest that expectations of quality of life from physicians are associated with their recommendation about life‐sustaining intervention . Studies have shown that physicians underestimate the outcomes for neonates . Some have pointed out that ‘among physicians, even pediatricians expect less favorable outcomes for premature babies than published national rates of survival and freedom from handicap’ .…”

Section: The ‘Our‐hope’ Approachmentioning

confidence: 99%

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The ‘ouR‐HOPE’ approach for ethics and communication about neonatal neurological injury

Racine

Bell

Farlow

et al. 2016

Develop Med Child Neuro

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NICUNeonatal intensive care unit ouR-HOPE Reflection -Humility -Openmindedness -PartnershipEngagementPredicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision-making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence-based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well-known disability paradox where patients self-report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the "ouR-HOPE" approach (Reflection, Humility, Open-mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self-assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decisionmaking, in order to guide the development of treatment goals and appropriate care plans. 1 It can be valuable in helping parents imagine the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, in this clinical context, the different stakeholders have, to some extent, their own vantage point toward the ethics of engaging in discussions and decisions based on neurological prognosis. Clinicians from different disciplines and specialties need to know, as accurately as possible, the nature and impact of a nervous system injury, in order to offer sound clinical opinions and services. However, the science of neurological prognosis, although progressing based on new research, 2-5 comprises a significant amount of uncertainty owing to various factors (e.g. intrinsic factors such neuronal plasticity, and extrinsic factors such as socioeconomic status [SES], parental involvement, access to specialized care during childhood, and psychological state). 6The ability to communicate prognostic uncertainty and engage in its discussion carries challenges because parents may expect clinicians to be knowledgeable experts and able to provide accurate, objectively derived, and evidencebased opinions in this area. Parents in this setting can face heart-wrenching situations, although some prognoses may also involve predictions about normal outcome, near-normal outcome, or milder degrees of disability. Parents can be called on for their active decisional input, even if they are fatigued and grieving. Accordingly, they want to know what to expect in terms of prognosis -t...

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Section: The ‘Our‐hope’ Approachmentioning

confidence: 99%

Section: The ‘Our‐hope’ Approachmentioning

confidence: 99%

Section: Relevancementioning

confidence: 99%

Section: Relevancementioning

confidence: 99%

Section: The ‘Our‐hope’ Approachmentioning

confidence: 99%

See 3 more Smart Citations

The ‘ouR‐HOPE’ approach for ethics and communication about neonatal neurological injury

Racine

Bell

Farlow

et al. 2016

Develop Med Child Neuro

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Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Schneider,

Roll,

Tissen-Diabaté

et al. 2024

JAMA Netw Open

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ImportanceAttitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated.ObjectiveTo assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life.Design, Setting, and ParticipantsThis cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany.Main Outcomes and MeasuresKnowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed.ResultsThe study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates.Conclusions and RelevanceResults of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.

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Neurological conditions: Prognostic communication, shared decision making, and symptom management

Peralta¹,

Bogetz²,

Lemmon³

2023

Seminars in Fetal and Neonatal Medicine

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Perspectives on anticipated quality-of-life and recommendations for neonatal intensive care: a survey of neonatal providers

Cited by 5 publications

References 27 publications

The ‘ouR‐HOPE’ approach for ethics and communication about neonatal neurological injury

The ‘ouR‐HOPE’ approach for ethics and communication about neonatal neurological injury

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Neurological conditions: Prognostic communication, shared decision making, and symptom management

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