Wednesday, November 5, 2014

Palliative Care in Pediatrics: Where do you start?

In inpatient pediatric palliative care there is one question that often plagues most practitioners: how do we start? Like other practitioners in hospice and palliative care, we want to build a relationship that will include tough questions and uncomfortable topics, but how to get there with children is often a bit intimidating, even to seasoned practitioners. Here is how our team strives to build a relationship:

  • First, we introduce ourselves and explain what palliative care is. Our team will usually begin by explaining that we are “an extra layer of support” that works with families dealing with serious illness or conditions.  At times, we may even put the patient into context: “we tend to see the sicker children in the hospital like your child”.  We share that we are here to help with clear communication, symptom management, and support during any decision-points that may arise.
  • Then we talk about our specific roles and how they overlap.  “Our physician will be looking after your child’s physical comfort, making sure that pain and symptoms are managed.  Our nurse will help with some of that, and can also offer information about what is going on medically.  Our social worker will be focusing more on your social and emotional comfort. Are there large worries weighing on you in addition to your child being in the hospital? Each member of the team can help communicate about each of these issues, as our roles somewhat overlap.”
  • Next we ask about their experience.  As Dr. Justin Baker from St. Jude’s says in his presentations, “how has this experience been for you”?  We listen to the story of the diagnosis and illness course and then again, ask about the experience.  What has it been like dealing with all of this?  This gives them a chance to connect and humanize the patient.
  • We ask to look at pictures of the child and the family before this hospitalization.  As Dr. Laurie Hicks from Levine Children’s Hospital puts it, “this lets me know what we are working towards”.   
  • Finally, we try to offer a specific way that we can help the family and/or patient.  This can be offering to find financial assistance, making a suggestion about something that other parents have found helpful, or offering to “be the bad guy” with visitors who overstay their welcome.  I usually hand parents my card and tell them that, though I am not available 24/7, my voicemail is.  If they think of a question or fear that they want to share or they have some worry or anger they need to get off their chest, they can call and leave me a message.  Even if they need to express their anger, they can do that there (though no one ever has).
Once we have a foot in the door, it often takes two more elements to connect with families: observation and timing. We talk regularly to our chaplain, child life specialists, and music therapist who communicate regularly about how the patient and families’ courses are ebbing and flowing. We watch body language, grooming, and habits for changes that may indicate a shift in how someone is coping that day, and we try to share these observations with patients and families: “I noticed that your expression looks sadder today than it did last week . . . what’s that about?” Like with other populations, working with pediatrics is about creating a human connection with patient and family. However, sometimes that takes working through one’s own discomfort and trusting that your teammates will help you get (and keep) your foot in the door so that, should a truly difficult conversation come up, you have the family’s trust that you will provide them with honest, caring information and guide them based on priorities that they have identified.

 Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).

Photo credit: Lynna' Alvarnas, with permission.

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