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Spinal fusion for scoliosis in patients with globally involved cerebral palsy: an ethical assessment.

Clinical ethics is a field of study that promotes the use of rational thought and clinical judgment based on scientific knowledge to reach conclusions regarding complex clinical problems1,2. Common subjects in clinical ethics include informed consent, surrogate decision-making, refusal of care, medical futility, end-of-life care, and quality of life.

Spinal fusion in patients with cerebral palsy who have global involvement, defined as Gross Motor Function Classification System (GMFCS) level V, poses an ethical dilemma3. A child with GMFCS level-V function has severely limited self-mobility, voluntary muscle control, and ability to keep the head and trunk upright. A so-called four-topic model has been developed and validated to assist the clinician in the analysis of ethical dilemmas in patient care (Table I)1,4-6. This model includes an evaluation of the indications, patient preferences, quality of life, and contextual features that underpin medical decisions. Indications include the problem, history, diagnosis, prognosis, acuity, how the patient may benefit, how harm may be avoided, goals of treatment, likelihood of success, and contingency plan in the event of failure. Patient preferences encompass the stated wishes of the patient or patient-centered decision-making by surrogates. Quality of life emphasizes the goals of restoring, maintaining, or improving the patient’s life. Contextual features are concerned with other factors that influence decisions such as religion, culture, the law, confidentiality, research, teaching, economics, and impact on the patient’s family and medical team.

View this table:

TABLE I 
The Four-Topic Model*



Stable balanced posture, improved health and function, increased comfort of the patient, and easing of burden to caregivers have been posited as indications for spinal fusion7-12. There are neither randomized controlled trials nor prospective longitudinal studies comparing fusion of the spine with the natural history of the disease. Outcomes measured …