Medical assumptions, morals affect patients' surrogate decision-makers
MedWire News: Family caregivers who are legally nominated as the surrogate decision-makers for patients in a vegetative state (VS) do not necessarily base life-sustaining treatment decisions on the patient's will, indicate study results.
The study authors note a discrepancy between patients' openly acknowledged wishes against prolonging treatment, and family members' decisions to continue artificial nutrition and hydration (ANH), and other life-sustaining treatments including antibiotics for lung infections.
The surrogates saw these measures as a "form of basic care that could not be rejected."
Family caregivers' moral obligation not to harm the patient also affected their decision-making; in one case from the study, the wife of a VS patient believed it was inhumane to halt nutrition and only provide fluids, and that it equated to starvation.
However, "suffering from starvation could only be the case if the patient was indeed aware," write Katja Kuehlmeyer (Ludwig-Maximillans-University, Munich, Germany) and colleagues in the Journal of Medical Ethics, and the woman in question admitted she would have wanted to refuse ANH if she was ever in a VS.
Three "types" of the family caregivers interviewed for the study emerged, report the researchers. Some hoped that the patient might eventually be able to communicate verbally again, some were in acceptance of the VS as the final stage of recovery, and some were preparing themselves for the patient's death.
"Counselling and access to psychological support for surrogates could be an important factor in improving their decision-making process for the sake of the patients and for their own sake," suggest Kuehlmeyer et al.
The team interviewed 14 next of kin to 12 VS patients to assess the role of advance directives, orally expressed wishes, and the presumed will of these patients in decisions on life-sustaining treatment.
Remarkably, say the authors, in half of the cases, surrogates reported statements made by the patient could be applied to the current situation. However, those wishes not directly related to VS needed interpretation, they add, and when there was a lack of knowledge of the patient's wishes, caregivers interpreted patients' survival and nonverbal behavior as a purposeful expression of a will to live.
Kuehlmeyer and co-workers conclude that to inform family caregivers on legal matters and the ethical weight of patient autonomy, "a brochure could be a successful and sustainable intervention."
By Sarah Guy