The Blog to Transform Advanced Care

Advancing Care through Innovation, Observation and Collaboration.

By: Joan “Jody” Ramer Chrastek, RN, DNP, FPCN

Communicating with children, teens, and young adults (CTYAs) who are experiencing serious or life-limiting illness can be enlightening, rewarding, and challenging. The wisdom and maturity they have gained during their illness can be impressive; or, in some cases, disease may have delayed a child’s development.

As with any complex population, there is no one easy way to pursue effective communication with CTYAs who are seriously ill; however, approaching interactions with humility, respect, and authenticity will go a long way in bringing meaning to your conversations.

Consider these important guidelines, which are covered more thoroughly in the California State University Shiley Institute for Palliative Care’s comprehensive online Pediatric Palliative Care curriculum:

  • Know the CTYA’s developmental and verbal abilities. This will help you better understand how to develop a trusting relationship with them. As a starting point, review  “For the Child to Hear: Development Considerations in Palliative Care,” a handout created by Kavita Desai, PhD, a psychologist with Children’s Hospitals and Clinics of Minnesota, that was first presented at the 2014 International Children’s Palliative Care Network Conference in Mumbai, India.  
  • Observe families, as they will educate you about the CTYA’s nonverbal likes and dislikes. For example, a family may say, “He really likes people to come close and shake his hand as he can’t see very well” or “Just stand back for a while and then he will get used to you and let you come up to him.”
  • Establish some common non-medical interest through verbal interactions. As a goal, work to build a trusting relationship with the CTYA, but recognize this is not always possible. Some families do not want the clinician to talk to the patient alone. The clinician must respect, understand, and be flexible to work as a team with the parents.
  • Engage the child in an age-appropriate game or story. This can often build a relationship that allows for open discussions of difficult topics. Use open-ended questions like “How do you think it is going?” or “What is the hardest thing for you just now?” These allow the CTYA the opportunity to share if they choose. Open-ended questions also lets them know that everyone on the team, including the medical team, would be open to any questions they have.
  • Remember the clinician’s main therapeutic relationship may be with the parent. This is fine, as sometimes the role of the clinician is to support the parent in caring for the child. Avoid getting in the middle of a parent-child conflict or talking to the child about something the parent did not want discussed. If the child asks directly, it is best to discuss the importance of including the parent in the discussion.

Building trust with a CTYA experiencing serious illness often takes time and patience. Sometimes, however, it can happen rapidly. Be prepared for either scenario.

Often just “being with” the CTYA is an invaluable gift to them. Many non-hospice professionals have great difficulty being with someone who is suffering; healthcare professionals generally want to help and rectify problems.

In palliative care, even when we cannot fix the underlying issue, we know there is always something more that can be done to support the patient or family. Sometimes this is quietly sitting with the individual. It can be encouraging for the CTYA and their family to know that they are not in this alone and have someone who is willing to stand with them in their pain and suffering.

This is our calling as palliative care practitioners and an affirmation of the invaluable work we do.

Learn more evidence-based strategies for caring for CTYAs and their families in the Pediatric Palliative Care Certificate program, offered by the CSU Shiley Institute for Palliative Care.

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