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End-of-Life Care Guidance: A Clinical Report Explained

April 25, 2022

Blog: Family Connections with Pediatrics

In this month’s Pediatrics, the American Academy of Pediatrics (AAP) published Guidance for Pediatric End-of-Life Care (10.1542/peds.2022-057011). This clinical report is written to provide guidance to your child’s doctor (in the community and in the hospital) and specialists during the time leading up to end-of-life, the dying process, and after death. This time period will likely be unique for each child, vary in length, and be full of uncertainty. This report offers common guidance through times that are stressful for families and doctors alike.

What is in the Guidance for Pediatric End-of-Life Care?

The report starts with an outline of the data on childhood death in the US and then is ordered by topics within stages of end-of-life.

  • Prep work: Highlights approaches to care such as palliative care (with the focus on quality of life and prevention/relief of pain and symptoms), shared decision making, and types of advance care planning that can be used to help families and doctors develop goals, plan, and manage. For example, the report walks through the types of medical interventions can choose if the heart stops or breathing stops and how to record such decisions.
  • As the end nears: Explores how to talk about and identify topics such as location of death, hospice care, life sustaining treatment, dying process, and organ donation, which arise as a child nears their final days. For example, in this section the authors suggest ways to discuss how to continue or stop medical treatments, such as asking, “Are we doing this to the child or for the child?”
  • After death: Raises topics such as the death pronouncement, autopsy, funeral arrangements, and grief support that will follow the death of a child. For example, this section examines a variety of aspects of support, such as counseling or debrief around the loss of a child for the family and the healthcare team.

In each stage, the report thoughtfully lays out what to expect, provides evidence to inform a doctor in how to provide care, and encourages communication and compassion.

The report promotes early, clear, and direct communication as key to moving through end-of-life care, noting the need for kindness and that repetition of topics may be helpful. For example, the report shares data that families like clear advice about their child’s diagnosis, prognosis, and pain. It also notes how much language matters and suggests avoiding saying “withdrawing care”. After the text, the report also has easy-to-read tools.

What Can You do With This Report?

  1. Although it is written for your child’s doctors, it may also be helpful to you in understanding where they are coming from so that you can work together along the journey of your child’s care at end-of-life. As the report states, families and doctors may have different opinions about what is “right” or “best” for a child, and without chances to reflect and discuss, there may be conflict and lots of hurt.
  2. If there are parts of the report that may help you as you approach end-of-life issues with your child, take the report to your trusted doctor. Ask questions. Share fears and concerns. Talk early and often.
  3. If your child is not in this stage of serious illness, this report may help to come up with or answer questions you have always had. Ask questions. Share fears and concerns. Talk early and often.
  4. If you want to read more of the AAP’s guidance materials about specific parts of end-of-life care that may help in thinking, discussions, planning, and preparation, several are linked below:
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