If surrogates’ decisions appear to conflict with patients’ known preferences, further exploration is needed. Ethicists may learn that:
• surrogates misunderstand the proposed clinical intervention;
• a patient is choosing to put the surrogate’s needs first;
• the patients’ stated wishes don’t fit the relevant clinical scenario.
Possible conflicts of interest should be on a clinical team’s radar if surrogates make decisions that appear to conflict with patients’ known preferences. However, there are many more likely explanations.
“It’s fascinating to me that we encourage people to appoint healthcare agents that are close to them, and know them the best — when, of course, these are the people that are almost guaranteed to have conflicts of interest,” says Timothy W. Kirk, PhD, associate professor of philosophy at York College of the City University of New York in New York City.
Conflicts between the surrogate and the clinical team can arise, some intractable. In some cases, nursing home staff have seen the patient on a daily basis for years, yet estranged family members are the ones making decisions. “The nurse manager and social worker may be thinking, ‘Nothing’s been written down, but we know she wouldn’t want this,’” says Kirk.
Kirk says there are two ways to approach this. One is going to court to challenge the surrogate’s fitness because he or she is making decisions contrary to the patient’s preferences. State laws vary as to the extent that clinicians can choose not to honor a care decision made by a surrogate decision-maker.
Before things get to that point, ethicists can help to explore the surrogate’s reasoning. Kirk starts with the assumption that a surrogate is “trying to do the right thing. Trying to understand what someone else would have wanted is a hard thing to do.”
A clinical ethicist isn’t always needed in these situations. “Many clinicians have the skills to do this without seeking help outside of the care team,” says Kirk.
It might be that the surrogate misunderstands the proposed clinical intervention, or envisions different outcomes than the team. “The surrogate may be applying some of the patient’s known values, while the team is applying other of the patient’s known values,” adds Kirk.
Even if the surrogate’s decision is somewhat self-serving, it doesn’t necessarily conflict with the patient’s values. “While ethical theory likes to presume that patient preferences are independent and self-interested, the empirical literature does not support this presumption,” says Kirk.
In fact, patients often choose to put family members’ needs above their own. “I can’t tell you how many times I’ve learned that patients are deliberately and thoughtfully making decisions motivated by what is best for their families, not for themselves,” says Kirk.
The issue of housing is one example. A common scenario: The surrogate is a family member who lives with the patient in subsidized housing, but the patient is the one who qualifies to live in that housing. If the patient has to go to a nursing home or dies, the surrogate no longer has a place to live.
“In a situation like that, there can be a strong incentive to make decisions that align with keeping the patient eligible for housing, so the surrogate also has a place to live,” says Kirk. While this is a contributing factor in the decision-making, the surrogate may also know the patient would prefer to go back home. “The patient may indeed make the same decision with the same motivation: so that the surrogate has a place to live,” says Kirk. Thus, the surrogate’s “self-serving” decision still reflects the patient’s values.
The patient may have asked the surrogate to give up a job, move into the home, and become a full-time caregiver. In this situation, both parties are relying on housing remaining available for the surrogate. “That may support an inference that the patient would make the same decision for the same reason as the surrogate is, which is consistent with substituted judgment,” says Margot Eves, JD, a staff bioethicist and director of the Clinical Ethics Immersion Program at Cleveland (OH) Clinic.
Eves says clinicians should “take a step back” if a surrogate’s decision appears self-serving. “The primary reason that surrogates may place, or appear to place, their own wishes over patient preferences is the overwhelming emotional burden of the situation,” says Eves.
Some surrogates lack social support themselves and fear being alone. Many have never tried to make decisions for another adult before. “Surrogates may have difficulty processing the ‘if/thens’ in complex medical scenarios,” says Eves. Many feel rushed to make a decision, confronted with new information. “Trying to understand it, its implications, and then consider various pathways may require time,” says Eves.
Surrogates often fear making the wrong decision, especially in end-of-life care. “Often, there is a significant amount of uncertainty,” says Eves. Even when patients have spoken to their families about their wishes, these often are not specific enough to be applicable to the current situation.
Ethical responses include “compassion, patience, and sincere inquiry,” says Eves. Ethicists should make ongoing efforts to redirect the surrogate’s focus back to the patient by taking the time to learn about the patient as a person. “Understanding the patient’s values informs the decision-making process, and increases our ability to guide or support the surrogate in thinking about medical decisions,” says Eves.
Eves offers this example of a nonjudgmental, transparent approach: “I understand that it is terribly upsetting to see your wife doing so poorly and that you want to make sure she has every opportunity to get better. However, my understanding is that before she became so confused, she told the doctor that she did not want to be intubated or have CPR. You also mentioned earlier that your wife has not seen a doctor the whole time you have known her; 38 years is a very long time to not see a doctor. It does not surprise me that someone who has not seen a doctor in so long also has indicated that she does not desire aggressive life-saving measures. We have an obligation to honor the patient’s wishes and values. However, you are requesting that we provide these interventions should she need them. I am sure you can appreciate that this creates a challenging situation. We just met her, and you are her husband; we know that you know your wife better than we ever will. Please, help us learn more about her, and why it is that you believe she would want these interventions even though she told us she would not.”
“The most important thing is to acknowledge the surrogate’s emotions, and not simply move on to ‘information-giving’ mode,” says Eves. Ethicists can:
• offer ideas on solutions or alternatives that were not yet identified;
• ask similar questions differently in a way that might be better understood by the surrogate.
Another way of asking, “What would Mrs. Smith want?” is “If Mrs. Smith could see what we see, and hear all the information from the doctors, what do you think she might say? What concerns might she have? What do you think she might want to know?”
“Ethics involvement can provide ‘fresh eyes’ to a situation,” says Eves.
• Margot Eves, JD, MA, Director, Clinical Ethics Immersion Program, Staff Bioethicist, Cleveland (OH) Clinic. Phone: (216) 444-8720. Email: firstname.lastname@example.org.
• Timothy W. Kirk, PhD, Associate Professor of Philosophy, City University of New York, York College, New York City. Phone: (718) 262-5316. Email: email@example.com.