National Leadership Conference Advocates Better Palliative and Hospice Care for Children

Greetings from National Harbor, Maryland, where I’m attending the National Hospice and Palliative Care Organization’s (NHPCO) 27th Management and Leadership Conference, entitled, “Listen, Engage, Advocate and Define: It’s About How We LEAD.”

NHPCO holds two major conferences annually, and this one is targeted more for administration and managers. I don’t routinely attend this one, but I am presenting a session designed to help adult-focused organizations develop systems to take better care of pediatric patients.

To this end, NHPCO published the Standards of Care for Pediatric Palliative Care and Hospice Programs, which are a supplement to a larger document describing standards of practice for all hospices. In the coming year, NHPCO will publish a new version of the Standards, which will incorporate pediatrics throughout the document.

This is important because it reinforces that all hospice programs have a responsibility to provide care across the lifespan. Although I can fantasize about the day that there is a pediatric-specific palliative care and/or hospice program for every child who needs one, the reality is that many children will receive palliative care through organizations that are largely focused on adults. This will likely be true for the foreseeable future because of numbers, geography, financial realities, and workforce issues. So our challenge is to make sure that everyone who is taking care of children is appropriately trained.

The Children’s Project on Palliative and Hospice Services (ChiPPS), a leadership council that provides guidance and input on pediatric issues to NHPCO, has been working on the pediatric standards for many years. The standards are based on well-established guidelines to ensure that organizations adhere to best practices in the care of all patients facing serious illness.

I am co-presenting these standards at the conference with the chair of the ChiPPS workgroup on Quality. We want to encourage managers and leaders to empower their staff to provide high-quality services to children in their communities. We’re trying to get to a world where all children with serious illness and their families can receive expert pediatric palliative and/or hospice care no matter where they live, and this is one small step!

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  1. sedmonston@hospicechesapeake.org' sedmonston says:

    Good afternoon! I am new in my position as Pediatric Coordinator for Hospice of Chesapeake. I was unaware of this conference and would have loved to hear your session since peds is a new program in our organization. Did you have a power point that you used? Is there anything you would recommend to a new program to get it going and supported?

  2. jarnold2@chmca.org' JimChmca says:

    Response from Dr. Friebert:


    Thanks for responding to my blog post. Yes, there was a powerpoint from the presentation, which I have sent to you. The Pediatric Standards, published by NHPCO, are a great place to start for new programs. Also, if your program is interested in training at a site that has established programs, the CAPC Pediatric Palliative Care Leadership Center training might be just the thing – http://www.capc.org.

    Hope this helps!

    Sarah Friebert, MD

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