Lethal Language, Lethal Decisions

Koogler, Tracy; Wilfond, Benjamin S.; Ross, Lainie Friedman

doi:10.2307/3528153

Cited by 93 publications

(70 citation statements)

References 24 publications

(13 reference statements)

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“…In pediatrics, lethality typically is used to describe conditions with shortened life spans and developmental disability for which there is normative judgment by those using the term that interventions are not appropriate. 4 Lethality is the pediatric equivalent to "futility," and the concerns expressed about futility [23][24][25] can be applied to lethality. It can be an effort to turn a normative decision about benefits/ harms and the value of life into a factual claim.…”

Section: Should Parental Requests For Long-term Mechanical Ventilatiomentioning

confidence: 99%

“…The conditions sometimes are described as a poor prognosis, referring to the predicted neurologic outcome. 4 Many clinicians seem to place a high value on cognitive functioning and independent living, a value that not all parents of children with profound disabilities share. 5 Clinicians' impressions of what life is like with profound disabilities typically are based on experiences limited to providing medical care and, for some, only inpatient care.…”

mentioning

confidence: 99%

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Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Wilfond

2014

Pediatrics

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Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children’s interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family’s perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members’ lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

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Section: Should Parental Requests For Long-term Mechanical Ventilatiomentioning

confidence: 99%

mentioning

confidence: 99%

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Wilfond

2014

Pediatrics

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“…As reported previously and now observed in our case, such "lethal" language predetermines medical treatment, because it predetermines parental and medical anticipations on the clinical course. 15 "Lethal" language is harmful because it may distract parents from unprejudiced decisions between different treatment options. When counseling in cases of life-threatening fetal anomalies, most physicians encourage a certain treatment option.…”

Section: The Treatment Team Commentsmentioning

confidence: 99%

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong?

Kidszun¹,

Linebarger

Walter

et al. 2016

Pediatrics

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Advances in prenatal diagnosis create a unique set of clinical ethics dilemmas. Doctors routinely obtain genetic screening, radiologic images, and biophysical profiling. These allow more accurate diagnosis and prognosis than has ever before been possible. However, they also reveal a wider range of disease manifestations than were apparent when prenatal diagnosis was less sophisticated. Sometimes, the best estimates of prognosis turn out to be wrong. The infant’s symptoms may be less severe or more severe than anticipated based on prenatal assessment. We present a case in which a prenatal diagnosis was made of severe osteogenesis imperfecta, leading to a decision to induce delivery at 31 weeks. On postnatal evaluation, the infant’s disease did not appear to be as bad as had been anticipated. We discuss the ethical implications of such diagnostic and prognostic errors.

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“…As medical providers we have an obligation to assure that non-directive counseling and care for infants affected with Trisomy 13 and 18 are not withheld based on the perpetuation of a false SFP. 15 There is an important lesson to be learned from Courtwright et al They make a convincing case that lethality begets lethality.…”

mentioning

confidence: 99%

“…The 'label is not only inaccurate but also dangerous'. 15 It uses the language of medical determination to mask what for many infants is ultimately a judgment about the child's quality of life. It is a characterization that wrests from parents a decision that generally only they can make for their child.…”

mentioning

confidence: 99%

Lethality begets lethality

McCaffrey

2011

J Perinatol

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Lethal Language, Lethal Decisions

Cited by 93 publications

References 24 publications

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong?

Lethality begets lethality

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