NEWS RELEASE - Helping doctors find better ways to share their diagnoses & predictions about infant brain injury

December 4, 2016

Between Blunt Trauma and Soft Peddled Hope - Kids Brain Health Researchers, Parents and Physicians Develop a Framework

[Montreal - December 4, 2016] - Instead of relishing the bleary hours after delivering her firstborn son, Donna Thomson was in a state of shock.

Twenty-eight years later, she vividly remembers why. The doctor told her “your son has a serious brain injury. He has cerebral palsy, mental retardation, or both. He will never be normal.”
 

“I felt an other-wordly relief and confusion,” says Thomson, pulled into a vortex of medical terminology, procedures and decision-making about the care of a fragile infant at a time when she and her husband felt least able to evaluate their choices and their long-term impacts.
 
The drive to ensure a better experience for young parents who face this situation every day – and to support the doctors who must make predictions about a child’s future, often in a state of uncertainty –  galvanized a task force in Montreal in 2015. Insights from their collective input and review of existing evidence are captured in a new publication, “‘ouR-HOPE’ approach for ethics and communication about neonatal neurological injury” published online December 4 in Developmental Medicine and Child Neurology.
“Together, we identified principles and questions identified through our consultation that doctors can use to assess the sensitivity of their own practice, and employ with others in responding to the challenges posed by newborn brain injury,” says Kids Brain Health Neuroethics Co-lead Éric Racine, Director of the Neuroethics research unit at the Institut de recherches cliniques de Montréal (IRCM).
 
Parents wonder if they can care for their baby – if he or she survives – and whether their child will ever be happy, according to Thomson. At the same time, “doctors want to support newborns and parents as best they can,” says co-author Dr. Steven Miller, Head of the Division of Neurology and a Senior Scientist in Neurosciences & Mental Health at The Hospital for Sick Children (SickKids).
 
They may also be feeling guilty about the long-term impact on families of intervening to preserve the life of an infant with devastating brain injury, because the child’s survival is partly a result of doctors’ actions and decisions. These emotional reactions are unavoidable, and if they aren’t recognized, they may exert undue influence on discussions between doctors and parents and their joint decisions.

“This is a common source of distress in neonatal care,” says Racine, who adds that research shows:

  • Physicians tend to have a more pessimistic view of quality of life outcomes for brain-injured newborns than parents (the disability paradox)
  • Parents of disabled children do not necessarily regret the decision to offer all possible support
“We recognized the real need for improvement in these discussions,” Racine adds. Together with colleague Dr. Emily Bell, specialists in the infant brain and parents of brain injured infants evolved the ouR-HOPE framework, which stands for Reflection – Humility – Open-mindedness – Partnership – and Engagement.  
 
“The ethical stakes of communication in acute neonatal neurological injury are high,” adds Dr. Bell, a former Kids Brain Health research associate. “There are many pitfalls in decision making based on predictions about neurological outcomes. It is not an exaggeration to state that parents are dealing with extremely stressful situations in which they are making important decisions that they will live with and reflect on for the rest of their lives.”
 
“We propose an approach that supports ethical communication and decision making in clinical situations. We offer this in the hope that further discussion and research will support integration of better, evidence-informed practices in the communicating expected outcomes in cases of infant brain injury.”
 
Fast Facts:
  • Children born with brain injury have increased risk of death or severe disabilities, such as cerebral palsy, intellectual disability, learning difficulties and visual impairment.

  • In Canada, 2.4 out of 1,000 live births involves an infant with a brain injury caused by lack of oxygen before or during delivery. 
  • Among Canadian children born very preterm (<29 weeks gestation) 46% have a brain-based impairment. Seventeen percent of these children are severely affected and 6.4% are diagnosed with cerebral palsy.
  • Kids Brain Health Network is a Canadian Network of Centres of Excellence dedicated to the early diagnosis, prevention and treatment of neurodevelopmental disabilities and support for families.
     
  • Founded in 1967, the Institut de recherches cliniques de Montréal (IRCM) / Montreal Clinical Research Institute is a non-profit organization that conducts fundamental and clinical biomedical research in addition to training high-level young scientists.
 
Contact:
Bethany Becker,
Communications Manager
Kids Brain Health Network
Work: 604.875.2424 ext 4672
Mobile: 604.838.4585
bbecker AT neurodevnet.ca
 
Anne-Marie Beauregard
Communication Officer
Institut de recherches cliniques de Montréal (IRCM) / Montreal Clinical Research Institute
514 987-5555
anne-marie.beauregard AT ircm.qc.ca


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

DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY
Eric Racine, Emily Bell, Barbara Farlow, Steven Miller, Antoine Payot, Lisa Anne Rasmussen, Michael I Shevell, Donna Thomson
and Pia Wintermark
Version of Record online : 4 DEC 2016, DOI: 10.1111/dmcn.13343

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