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Conflicts between parents and clinicians: Tracheotomy decisions and clinical bioethics consultation
Kristi Klee, Benjamin Wilfond, Karen Thomas
1Seattle Children's Hospital, USA.
Insights
Conflicts over pediatric tracheotomy decisions, especially for children with profound cognitive disability, often require bioethics consults. Understanding parental values and clinician biases is crucial for navigating these complex airway support choices.
Area of Science:
- Pediatric Bioethics
- Medical Decision-Making
- Palliative Care
Background:
- Parents of children with profound cognitive disabilities face complex life-long decisions, including airway support via tracheotomy.
- Conflicts can arise between parental desires and clinician recommendations regarding tracheotomy placement, necessitating bioethics consultation.
Purpose of the Study:
- To explore conflicts surrounding tracheotomy decisions in pediatric patients requiring bioethics consultation.
- To analyze the frequency and context of tracheotomy-related bioethics consults.
Main Methods:
- Retrospective cohort study of pediatric patients (birth to 18 years) with bioethics consults for tracheotomy decisions.
- Data collected from April 2010 to December 2016 using a standardized tool reviewing palliative care, social work, clinical, and bioethics notes.
Main Results:
- Out of 248 clinical bioethics consults, 31 involved tracheotomy discussions for 21 children.
- 13 of these 21 consults were for children with profound cognitive disabilities, highlighting a specific area of conflict.
Conclusions:
- Clinicians must recognize their biases and understand parental values regarding burdensome care when discussing pediatric tracheotomy.
- Effective communication and shared decision-making are essential to navigate parental and clinician disagreements on tracheotomy interventions.
Background:
The parent of a child with profound cognitive disability will have complex decisions to consider throughout the life of their child. An especially complex decision is whether to place a tracheotomy to support the child's airway. The decision may involve the parent wanting a tracheotomy and the clinician advising against this intervention or the clinician recommending a tracheotomy while the parent is opposed to the intervention. This conflict over what is best for the child may lead to a bioethics consult.
Objective:
The study explores the conflicts that may arise around tracheotomy placements.
Research Design:
This study is a retrospective cohort study of pediatric patients for whom a tracheotomy decision required a bioethics consult.
Participants And Research Context:
Pediatric patients aged birth to 18 years old with a bioethics consult for a tracheotomy decision conflict between April 2010 and December 2016. A standardized data collection tool was used to review notes entered by the palliative care team, social workers, primary clinical team interim summaries, and the bioethics consult service.
Ethical Considerations:
The study was reviewed and approved by the medical center's institutional review board.
Results:
There were 248 clinical bioethics consults during the identified study period. There were 31 consults involving 21 children where the word tracheotomy was mentioned in the consult, and 13 of the 21 consults were for children with profound cognitive disability.
Discussion And Conclusion:
Clinicians need to be aware of their own biases when discussing a child's prognosis and treatment options while also understanding the parents' values and what the parent might consider to be burdensome in the care of their child and the acceptable burden for the child to experience.
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