Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families ’ Counter-discourse for Recuperative Ethos

AbstractParents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is “incompatible with life” even though some children with the condition live for several years. This paper considers parents’ response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregr ounding Cathryn Molloy’s recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians’ descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by usi ng language such as “incompatible with life,” physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community—including learning from blogs and online for ums— employ palliative care practices, and seek more accurate, descriptive language that is compatible with care.
Source: Journal of Medical Humanities - Category: Medical Ethics Source Type: research

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This study describes the overall outcome in a country where the therapeutic interruption of pregnancy is not available. The medical records of women with prenatal diagnosis of full trisomy of T13 or T18 between October 1994 and October 2017 were analyzed in order to describe their natural outcomes. Thirteen cases of T13 and 29 cases of T18 were included. The miscarriage rate was 9% for T18 and no cases for T13. Intrauterine fetal death occurred in 46% and 52% of cases for T13 and T18, respectively. The rate of live births for T13 was 54%, and the median survival was one day (95% CI -33.55 - 90.40) and 71% died in the first...
Source: Genetics and Molecular Biology - Category: Genetics & Stem Cells Source Type: research
CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated. PMID: 31280664 [PubMed - as supplied by publisher]
Source: Palliative Medicine - Category: Palliative Care Authors: Tags: Palliat Med Source Type: research
Conclusion: Patients with LEP had significant differences and disparities in end-of-life decision-making. Interventions to facilitate informed decision-making for those with LEP is a crucial component of care for this group. THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and Communicating Risks at the End of Life (Janet Malek) Clinicians sometimes decline to offer interventions even if their refusal will result in an earlier death for their patients. For example, a nephrologist may decide against initiating hemodialysis despite a patient’s rising creatinine levels if dea...
Source: blog.bioethics.net - Category: Medical Ethics Authors: Tags: Health Care syndicated Source Type: blogs
Publication date: April 2017 Source:Canadian Journal of Cardiology, Volume 33, Issue 4 Author(s): Aisling A. Young, Christy Simpson, Andrew E. Warren Trisomy 18 (T18) is a genetic disorder with cardiac lesions in up to 90% of patients. Cardiac surgery is not frequently offered because of the overall poor prognosis, although this has recently been challenged. Our study aimed to explore the practices and attitudes of Canadian pediatric cardiologists managing T18 patients. We administered a survey to pediatric cardiologists attending the Canadian Cardiovascular Congress, Canadian Pediatric Cardiology Association Business Mee...
Source: Canadian Journal of Cardiology - Category: Cardiology Source Type: research
We describe, using literature on trisomy 13 and trisomy 18, how information shared between parents and providers can improve perinatal counseling and family support.
Source: Seminars in Perinatology - Category: Perinatology & Neonatology Authors: Source Type: research
AbstractParents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is “incompatible with life” even though some children with the condition live for several years. This paper considers parents’ response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregr ounding Cathryn Molloy’s recuperative ethos theory (2015), we find that par...
Source: Journal of Medical Humanities - Category: Medical Ethics Source Type: research
Publication date: Available online 17 November 2016 Source:Canadian Journal of Cardiology Author(s): Aisling A. Young, Christy Simpson, Andrew E. Warren Trisomy 18 (T18) is a genetic disorder with cardiac lesions in up to 90% of patients. Cardiac surgery is not frequently offered because of the overall poor prognosis, though this has recently been challenged. Our study aimed to explore the practices and attitudes of Canadian Pediatric Cardiologists managing T18 patients. We administered a survey to Pediatric Cardiologists attending the Canadian Cardiovascular Congress, Canadian Pediatric Cardiology Association Business Me...
Source: Canadian Journal of Cardiology - Category: Cardiology Source Type: research
by Jenni LinebargerWhat is a “lethal condition” really? How does the definition change as medical advances are made? Several times a year, I meet parents who’ve had providers tell them that their baby has a “lethal diagnosis” (or worse, that the diagnosis is “incompatible with life”) when testing detects trisomy 13 or trisomy 18. Such dire prognostication sets the stage for all future interactions with the health care community. For some, it becomes a rallying cry to prove providers wrong, for others it becomes a sealed fate. For all, it declares a level of certainty that we just d...
Source: Pallimed: A Hospice and Palliative Medicine Blog - Category: Palliative Care Tags: ethics hospital linebarger NICU pediatrics surgery Source Type: blogs
We conducted a survey‐based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal‐Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respo...
Source: American Journal of Medical Genetics Part A - Category: Genetics & Stem Cells Authors: Tags: Original Article Source Type: research
The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English‐speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives. The participants were 332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their ...
Source: American Journal of Medical Genetics Part C: Seminars in Medical Genetics - Category: Genetics & Stem Cells Authors: Tags: Research Article Source Type: research
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