The most difficult decision: helping parents make life-or-death choices

December 7, 2016

Every day, soon-to-be parents across Canada receive some of the most difficult news a physician can deliver: that their unborn child is at high risk of being born at the limit of viability. Parents are confronted with situations where their vulnerable infant is potentially facing life with a range of handicaps, or even death.

This issue is close to heart for Dr. Thierry Daboval, professor at the University of Ottawa’s Department of Pediatrics, as well as Medical Director of the Neonatal Follow Up clinic at the Children’s Hospital of Eastern Ontario and academic neonatologist at The Ottawa Hospital. He has found that many doctors are unprepared to have conversations with parents about the best interest of their newborn, or to describe available options and their potential risks.

To address this, Daboval and his team spoke to parents who have faced such difficult choices to better understand their feelings throughout the process. Dr. Daboval found that parents want to participate in the decision-making process and that some felt frustrated or had regrets because they felt they hadn’t been sufficiently involved. Armed with this information, Daboval and his colleagues created a framework and a strategy to help physicians better accompany parents through such difficult decisions, as highlighted in an article published today in PLOS ONE.

“I was uncomfortable with the fact that some neonatologists would attempt to ‘protect’ parents from the burden of making what essentially is a life-or-death decision,” explains Dr. Daboval. “They would withhold some of the risks faced by vulnerable infants, on the pretext that parents could suffer their whole lives from having made that decision for their child. Some neonatologists had the opposite reaction: they merely provided statistics on the risks and left the parent to decide for themselves. It’s a complex situation and every parent is different. What I wanted to know was how to help parents fully understand and participate in a complex decision process and be satisfied with their level of involvement.”

The shared decision-making framework lays out key strategies for physicians to ensure an active and satisfactory participation from parents:

  1. Build a trustworthy parent-physician relationship
    Demonstrate empathy by validating the parents’ emotional reactions and thoughts: ask parents how they want to be supported, pace the conversation to the parents’ needs, and allow the parents to be the “expert” on their child’s best interests.

  2. Provide balanced information
    Describe risks and advantages, the positive and negative outcomes of the situation: provide clear, direct and truthful information even if it may be devastating, describe what will happen to the baby, step-by-step, and answer parents’ questions.

  3. Offer choices with regard to treatment options
    Explain the options that parents can choose from: discuss treatment options in relation to parental concerns and values, consider discussing options that may differ from the parents' opinion, and consider discussing other options even though they are not described in guidelines.

  4. Give parents time to think
    Give the parents time to privately discuss the information and treatment options, then conduct a follow-up visit.

Dr. Daboval’s findings have been integrated into a new shared decision-making model that was recently adopted by The Ottawa Hospital’s birthing facility. Moreover, these findings are being used to teach Fellows specializing in neonatal and perinatal medicine, and will be integrated into the updated version of the national guidelines on counselling and management in cases of anticipated extremely preterm birth. The team now wants to look at whether the Fellows will benefit from this recommended approach to communications.

Read the report in PLOS ONE

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