Some surrogates overriding organ donors' wishes
Hospitals sometimes "surrender" to family demands
Some countries, such as Australia, Spain, Norway, Italy, and Canada, allow next of kin to override the consent of registered organ donor candidates if they personally do not concur with the donation desire of their relative, but this form of surrogate decision-making represents a double standard in terms of the principle of substituted judgment, argues Katrina A. Bramstedt, PhD, a clinical ethicist and associate professor at Bond University School of Medicine in Australia, and former faculty in the Department of Bioethics at Cleveland (OH) Clinic Foundation.1
This is not legally permitted in the United States. "However, sometimes U.S. hospitals do 'cave in' to family demands if they have a fear of media reprisal spurred by the family," she says. "Hospitals don't want bad press. To avoid this, they will sometimes 'surrender' rather than hold firm and educate families on the law and ethics of the situation."
Reinforce ethical obligations
Bioethicists should take a proactive approach, Bramstedt urges, by offering educational sessions to hospital personnel that reinforce the legal and ethical obligations of honoring the expressed values of their patients.
Surrogates who want to give their loved one a chance at life sometimes view enrollment in a research study as a means toward that end. "In the setting of end of life, when the patient's values are known, families might want to deviate from that. They demand clinical or even research interventions in attempts to keep their loved one alive, avoiding death, and avoiding the discussion of organ donation with procurement personnel," Bramstedt adds.
Surrogates sometimes pursue study enrollment as a delay tactic with the goal of "curing" their loved one, even if this is contrary to the patient's values and wishes at the end of life. "Study participation could potentially prevent organ donation after death, if the study exposed the patient to agents which were toxic or if the organs otherwise deteriorated as a result of the extended dying process," she says.
If a patient has an advance directive, this should be consulted to ascertain if there are any expressed preferences about research, heroics, or specific technologies or interventions, says Bramstedt. "Surrogates, either out of desperation, ignorance, or emotional entanglement might be caught up in 'therapeutic misconception' believing study participation will be for the clinical benefit of their loved one rather than future patients," she explains.
A bioethicist with the research subject advocate role can perform a capacity assessment on surrogates involved in the consent process. In addition to therapeutic misconception, the bioethicist can also explore the situation for surrogate conflict of interest.
"Hopefully, there will be more involvement of research subject advocates in participating in the consent process, assessing the decisional capacity of surrogates, and looking after the welfare of the subjects who are enrolled in studies by way of surrogates," says Bramstedt.
1. Bramstedt KA. Family refusals of registered consents: The disruption of organ donation by double-standard surrogate decision-making. Internal Medicine Journal 2013;43:120123.
• Katrina A. Bramstedt, PhD, Clinical Ethicist, Bond University School of Medicine, Queensland, Australia. Email: firstname.lastname@example.org.