The role of surrogate decision-makers is to make decisions consistent with the patient’s previously expressed wishes, written documents, and values. “But that is not what usually happens,” says Cheyn Onarecker, MD, MA, chair of the healthcare ethics council at Trinity International University’s The Center for Bioethics & Human Dignity in Deerfield, IL.
Lack of communication between the patient and the surrogate and/or between the surrogate and the medical team is the biggest obstacle, according to Onarecker. There are a few common examples:
• Often, the person who becomes the surrogate does not know the patient well enough to make an informed decision, and there is no advance directive. “Nonetheless, the surrogate must try to make a decision that is in the best interests of the patient,” Onarecker observes.
• Surrogates feel solely responsible for deciding on life or death for the patient. “It is very difficult for the surrogate to make a decision to stop life-sustaining treatment,” Onarecker notes.
This can cause surrogates to make a choice that appears contrary to the wishes of the patient. “We contribute to this, sometimes, by asking questions incorrectly,” Onarecker admits. If surrogates are asked a general question such as, “What would this patient want?,” the answer is usually going to be something like, “To do everything they can to get well.”
“The better question, many times, is ‘Given that your mother will not recover the ability to interact with her family or care for herself, what would she want us to do?’” Onarecker offers.
• Surrogates become confused when multiple clinicians bombard them with technical information. “The hospitalist team changes every week — and sometimes more often than that,” Onarecker says.
Surrogates do not know who is making medical decisions for the patient. To the medical team, it looks like the surrogate is stubbornly refusing to make what seems like an obvious decision. “To the surrogate, though, multiple physicians are giving out different opinions on what should be done,” Onarecker notes. Surrogates establish a rapport with a particular hospitalist, only to find a different physician in charge the next day. Designating one physician to handle the back-and-forth of information from the medical team to the surrogate is helpful.
• It may be unclear to everyone what option is really in the patient’s best interest. “There are many situations when there does not seem to be one best solution,” Onarecker says.
The medical team is unsure about the prognosis; many specialists are offering various treatment options. “How is the surrogate supposed to know what is best when the medical team doesn’t even know?” Onarecker asks.
Surrogates in this situation need all the support they can receive from the medical team, including palliative care, hospice, or chaplains. “As medical professionals, we are involved with life-and-death situations all the time,” Onarecker says. “But surrogates don’t do this for a living.”
Before losing decision-making capacity, patients may decide to forgo life-sustaining treatment. “But later, the surrogate insists upon such treatment,” says Robert N. Swidler, vice president of legal services at St. Peter’s Health Partners. Swidler and a colleague created an informational pamphlet for these cases called “When a Patient’s Prior Decision to Forgo Treatment Conflicts with a Family’s Current Insistence that Treatment be Provided.” Specific to New York state law, the pamphlet helps in these ways:
• It shows the surrogates they are not the first ones who misunderstood their role. “It demonstrates that the situation is not unique, and that we have planned for it,” Swidler explains.
• It explains the surrogates’ role is to advocate for the patient’s wishes, not to impose their own view. “This can lessen the emotional burden on the surrogate,” Swidler offers. That is because much of the stress surrogates experience stems from the burden of making a decision. “They just need to recognize that a decision has already been made,” Swidler adds.
• It reduces tension between the surrogate and the clinical team. Putting something in writing for guidance makes it clear clinicians are not pushing their personal values onto the situation. “Rather, they are informing the surrogate about the ethical principles the hospital follows in all cases,” Swidler offers.
• It is an educational tool for staff. Some surrogates are adamantly opposed to the patient’s prior decision. “The pamphlet will help reduce the number and duration of disputes,” Swidler says. “But it won’t eliminate them.” Sometimes, the situation resolves on its own, as the patient passes away despite treatment efforts. Otherwise, says Swidler, there are three options:
- Obey the surrogate, do not write the do-not-resuscitate (DNR) order, and resuscitate the patient in the event of cardiac arrest;
- Obey the surrogate for the moment, but seek a court order authorizing the DNR order;
- Obey the patient, write the DNR order, and let the surrogate challenge it in court if he or she is so inclined. “The specific facts of the case may tilt the matter more toward one or another of these options,” Swidler adds.