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Caring for gravely ill children
A R Fleischman1, K Nolan, N N Dubler
1Department of Pediatrics, Albert Einstein College of Medicine & Montefiore Medical Center, Bronx, NY.
Insights
Pediatric healthcare professionals need guidance for critically ill children. A collaborative approach prioritizing the child
Area of Science:
- Pediatric Palliative Care
- Bioethics in Pediatrics
- Child Health Management
Background:
- Limited guidance exists for pediatric healthcare professionals managing critically or terminally ill children.
- Existing literature primarily addresses adult end-of-life care.
Purpose of the Study:
- To develop a principled approach for the treatment and healthcare decision-making for critically ill children.
- To provide guidance for pediatric healthcare professionals facing complex ethical dilemmas.
Main Methods:
- A 3-day meeting convened pediatricians and other stakeholders.
- A consensus-based approach was developed through group discussion.
Main Results:
- The child's needs and interests must be central to all treatment plans.
- Child involvement in decision-making is crucial, respecting developmental maturity.
- Parents are primary decision-makers, but professional obligation to protect the child's interests remains.
- Quality of future life is a relevant consideration in all decisions.
Conclusions:
- Decision-making should be a collaborative process involving the patient, parents, and professionals.
- Ethics committees and consultations can resolve conflicts.
- When cure is not possible, promoting comfort becomes the primary goal.
- Focus should be on optimal pain management and holistic well-being (physical, psychological, spiritual) for the child and family.
Background:
Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care professionals in the management of children who are critically or terminally ill.
Methods:
Through a 3-day meeting in Tarrytown, NY, attended by a group of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health care decision-making for, children who are gravely ill.
Results:
The group agreed that the needs and interests of the child must be the central focus of any treatment plan and that the child should be involved to as great extent possible, consistent with developmental maturity, in the decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natural guardians of children and ought to have great latitude in making decisions for them. However, parental discretion is not absolute and professionals must maintain an independent obligation to protect the child's interests.
Conclusions:
Decision-making should be collaborative among patient, parents, and professionals. When conflict arises, consultation and ethics committees may assist in resolution. When cure or restoration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain medication and compassionate concern for the physical, psychological, and spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.