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End-of-life decision making for children: Supporting the needs of parents

When a child is diagnosed with a life limiting illness or condition, his/her parents are thrown into one of the most painful and confusing times a family can face. Not only must they quickly learn about complex diagnoses and confusing treatment options, but they must also deal with the potential death of their child. Unfortunately, there are few resources to which a parent of a child diagnosed with a life limiting illness can turn.

Being prepared for the death of a child is a state rarely achieved by either parents or health care providers. Nonetheless, in 2001 almost 54,000 children under the age of 20 died in the US. About half were infants less than one year of age, most of whom died as a result of prematurity or congenital abnormalities. In children older than one year, over half of deaths resulted from accidents or injuries. Of the remaining childhood deaths, major causes were cancer and congenital abnormalities including heart defects. These statistics reveal that significant numbers of children succumb to illnesses following a period of time during which diagnosis is made and aggressive treatment of the illness is being pursued. It is projected that up to 10% of children in the US are living with known life limiting conditions for which death is a real possibility.

Advance care planning–a process of considering one’s values and preferences so as to inform future treatment choices–is well established as an important aspect of end-of-life care for adults and has generated numerous well-developed guides and tools. These guides serve to stimulate and to assist discussions between an adult patient and family members and between an adult patient and healthcare providers. Often these discussions occur long before the adult is faced with a terminal illness.

Childhood deaths do not follow the same trajectory as those in adulthood. Unlike adults, parents of children do not consider future treatment choices for their child prior to a diagnosed life limiting illness. In addition, parents and health care providers alike are exceedingly reluctant to give up on aggressive, curative-oriented treatment option. However, once the diagnosis of a life limiting illness has been made, parents often implicitly go through a process of considering values and preferences as part of decision making about treatment choices. Discussions and planning must include the need to maximize quality of life with a serious illness, the need to consider the burden to the child as well as the promise of therapies, and the need to encourage transparent sharing and support about the range of possible outcomes, including death. These discussions are emotional and difficult, for health care provider and for parents.

Despite an overwhelming reluctance to address decisions about end-of-life care, parents of children diagnosed and living with a potentially life limiting illness face current and future decisions about those treatments they may want to pursue for their children and those treatments they may chose to forego. Failure to address end-of-life decision making with families early in the course of a child’s illness can result in delays in providing effective palliative care for the child, decreased potential quality of life for the child, and increased stress for parents who struggle through how to make these difficult decisions. Recognition of and open communication about the potential death of a child is required to begin addressing these difficult decisions about appropriate treatment choices.

Even though decisions to withhold or withdraw medical interventions clearly are a part of pediatric end-of-life care, little is known about how parents move through the end-of-life decision making process and how health care professionals can be of help in this process. There is a clear need to study end-of-life decision making in parents of children with life limiting illnesses and to develop tools to assist families and health care providers in discussions of these decisions.

With support from the Emory Medical Care Foundation, Kathy Kinlaw and Karen Trotochaud of the Center for Ethics will join Dr. Pamela Bachanas, Associate Professor of Psychiatry and Pediatrics, in the development of a pediatric advanced planning guide for parents of children with a life limiting illness and in the conduct of a pilot study of its efficacy with a small group of parents and health care providers. This pediatric advance planning guide will draw on relevant information learned from adult advance care planning guides with significant modifications based on what is known about pediatric end-of-life care. It will be designed to assist health care providers in having earlier discussions about end-of-life care, provide a structure for those conversations that will help parents in making end-of-life decisions, and inform parents about the decisions they may face if and when their child faces a terminal condition. This guide will be designed for use by health care providers with parents as a communication tool to facilitate discussions between the medical team and parents about decision making.

An interdisciplinary effort between the Departments of Psychiatry and Pediatrics and the Center for Ethics, this project is an outcome of the state-wide Pediatric End-of-Life Care Task Force sponsored by the Center for Ethics and is based on recommendations stemming from the Task Force report. The pilot study will include parents and healthcare providers from the Pediatric HIV clinic and the Neonatal Intensive Care Unit at Grady Hospital and from the Brain Tumor Clinic at Children’s Health care of Atlanta at Egleston. Completion of an initial pilot study will provide background information for development and support for a larger trial on the efficacy of this intervention tool with parents and health care providers.

[ Posted by Karen Trotochaud at January 28, 2004 03:09 PM | More Health Science Ethics articles ]

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