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Challenges of Treating Young Patients With a Terminal Prognosis

Interview with Abby R. Rosenberg, MD, MS

Matters concerning negative prognosis, transitioning into hospice care, end-of-life (EoL) scenarios, and other related topics can be very hard to discuss with patients and their family members. Having to conduct these sensitive conversations with pediatric patients presents even more challenges, considering certain ethical and emotional precautions must be taken into account.

The prevailing view of clinicians is that adolescent patients should not be kept in the dark about the nature of their poor prognosis. Still, the primary goal of clinicians is to avoid harming patients and to minimize the anxiety, sadness, and anger that may occur in patients and parents facing the reality of mortality.

“I think the message here is that we should always consider the pace of delivering difficult news,” said Abby R. Rosenberg, MD, MS, from the Seattle Children’s Hospital Cancer and Blood Disorders Center in Seattle, Washington.

In a new article published in JAMA Pediatrics, Dr. Rosenberg details the evidence supporting the position of “gently but persistently” engaging young patients in discussions about their prognosis and disease progression.1 According to the review, these hard conversations may be difficult for patients and parents in the short term but will facilitate critical ongoing discussions in the future.

Historically, the policy of “truth-telling” was not recommended. Often, doctors made sure patients and their parents were left unaware of a grim prognosis.2 However, while times have changed, parental autonomy is still something respected by clinicians. Some parents may wish to protect their child from the knowledge of their own mortality, at which point clinicians should respect the parents’ wishes and follow the precept of “do no harm.”3

Tips for Breaking the News

If the situation is appropriate for having EoL conversations with patients and families, clinicians can receive some guidance by asking family members about their cultural or religious beliefs, and how they may wish to incorporate them into the child’s health care.

A core guiding principle of conducting difficult conversations with patients and family relies on the “ask-tell-ask” strategy, whereby clinicians obtain permission to explore family expectations and information needs. This allows clinicians the opportunity to compassionately deliver important prognostic information to patients and parents, whilst allowing them the opportunity to ask their own questions in response.4

According to Dr. Rosenberg, opening up the lines of communication with parents is an essential step to understanding the parents’ preferences and encouraging a trusting partnership between parents and clinicians. “As a general rule, I try not to plan on a ‘bad news’ and ‘goals of care’ conversation on the same day. The reason is…families will understandably be upset when they hear a poor prognosis. So I prefer to give them time to digest the information and then have a follow-up conversation about what to do about the poor prognosis.  Sometimes it helps [and families want] to hear options, but I almost always suggest they take time to think about them and then we agree on when I can come back to discuss,” said Dr. Rosenberg.

There is always the danger that a patient may hear about his or her prognosis by accident. Other times, 1 clinician may deliver a very different message from another. “We hear from families often that this difference in opinions and message is stressful,” said Dr. Rosenberg.

Because of this, it is important that all clinicians are working closely together to maintain a consistent message with parents and patients in order to avoid harming the family, and to help with minimizing the negative emotions that naturally come with difficult conversations about a poor prognosis, concluded Dr. Rosenberg.

 

Last updated on: December 12, 2016
First published on: December 1, 2016
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