In a piece published in BMJ Ethics, authors explored various approaches for resolving disputes between physicians and families regarding nonestablished medical treatment for patients unable to decide for themselves. The paper asserted that a process-based approach, in lieu of litigation, would minimize the personal and financial burden for families and practitioners alike when making end-of-life decisions.
In a highly publicized UK court case, Justice Francis of the British High Court denied the parents of Charlie Gard the right to take their son overseas to the United States for experimental treatment. Gard, who had an extremely rare mutation of a genetic disease, “endured months of aggressive [intensive care unit] care” during the contentious court proceedings, which was a tremendous drain on his family and “prolonged [his] dying process.” The authors state that this case highlights the necessity for a nationwide uniform procedure for similar conflicts to curtail the emotional and financial burden on family members and the medical community. The piece explores the various judicial standards across states in the United States, advocating for a process-based approach such as that first seen in the case Hudson v Texas Children’s Hospital.
Per a 1999 Texas statute authorizing a “processed-based approach,” physicians and hospitals may withdraw life-prolonging interventions if approved by an ethics committee and if no other facility can be found within 10 days to provide treatment according to the family’s wishes. Each of 6 cases in the 2 years following the statute’s establishment concluded without judicial involvement. As such, the processed-based approach eliminated the necessity of litigation and associated difficulties.
The core concepts of the processed-based approach are (1) informing family of the objective facts to guide them to a decision which reflects their own values; (2) “broad shoulders,” in which the doctor makes a recommendation and subsequently bears the burden of the responsibility; and (3) “shared deniability,” in which neither the patient nor the practitioner is responsible for the outcome. Per these aspects, the authors asserted, the processed-based approach reassures grieving families that they explored every possible option while minimizing the bureaucracy involved in court proceedings.
As a highly delicate and case-sensitive issue, cessation of treatment for noncompetent patients will continue to be central to the medical and bioethics communities. In exploring the efficacy of the process-based approach, the authors hope to provide support for the decision making of families and clinicians.
Paris JJ, Cummings BM, Moreland MP, Batten JN. Approaches to parental demand for non-established medical treatment: reflections on the Charlie Gard case [published online May 18, 2018]. J Med Ethics. doi:10.1136/medethics-2018-104902