Even caring surrogates can make inappropriate choices
A recent ethics consult at The Ottawa Hospital in Ontario, Canada involved a victim of domestic violence. “The challenge was that the husband, who had severely beaten the patient, was the patient’s substitute decisionmaker,” recalls Thomas Foreman, DHCE, MA, MPIA, director of the Department of Clinical and Organizational Ethics.
Ethicists grappled as to whether the individual could be legally eliminated as a decisionmaker who would determine whether life support would be withdrawn. “What ultimately happened was because the person was arrested, he no longer met the criteria to be the decisionmaker,” he says.
In another case, the surrogate was an estranged wife who the patient had not seen in years, yet they were still legally married and she had decisionmaking authority. “When told that her husband was suffering, her response was ‘Good, I want him to suffer.’ She was clearly an inappropriate surrogate,” says Craig M. Klugman, PhD, professor and chair of the Department of Health Sciences at DePaul University in Chicago.
Some surrogates inappropriate
Most surrogate decisionmakers care deeply about the patient, “yet often make inappropriate choices,” says Lea Brandt, OTD, MA, OTR/L, co-director of the MU Center for Health Ethics at University of Missouri in Columbia. Family members sometimes have no idea what the patient would want, she says.
Often, the content of an advance directive does not seem to apply to the patient’s current situation, or it was developed many years ago, calling its validity into question.
“If the surrogate has not ever had a discussion with the patient regarding his or her wishes, has moral beliefs divergent from the patient, or is emotionally conflicted, then the surrogate’s ability to make decisions consistent with the patient’s values is compromised,” says Brandt.
Some surrogates make statements such as, “I know my mom wouldn’t want this, but I just can’t bring myself to make a decision which will cause her death.”
“When surrogates become agitated and focus solely on the medical decision instead of the process for determining what the patient would want, it is a red flag,” says Brandt. He or she may not be appropriately representing the patient’s wishes.
Here are some other “red flags” involving surrogates that bioethicists should be mindful of, says Klugman:
The long-lost relative. “This is the person who shows up out of the blue, has not seen or spoken with the patient in five, 10, or 20 years, and suddenly tries to state what the patient would or would not have wanted,” says Klugman.
A surrogate who seems to be making decisions that are best for him or her, not the patient. “For example, a new spouse does not want to pursue treatment with a high likelihood of beneficence for the patient, and stands to inherit a great deal of money,” says Klugman.
The convenient surrogate. Some individuals are named as surrogates simply because they are available. “This person may not know the patient all that well, but is the easiest person to get ahold of,” says Klugman.
If the bioethicist suspects that the surrogate does not have the patient as the central focus of deliberation, or is operating from a personal agenda, then it is essential to inform the healthcare team and attempt to have a different surrogate appointed, says Klugman. This may require an emergency hearing with a judge.
“The role of the bioethicist is to ensure that all voices are heard and represented,” says Klugman. “If the surrogate is not accurately representing the patient, then another surrogate should be sought.”
Providers are often unaware of regulatory requirements in their state involving surrogate decisionmakers. “You don’t want to exclude people who have a legal right to participate. But you want to be careful about bringing people into that circle who don’t have a right to be there,” says Foreman.
In Ontario, this is less difficult. When the team believes the surrogate is not acting in the patient’s best interest, the case is referred to a tribunal for an independent review. “That is great, because it takes it out of the hands of the team,” says Foreman.
The board hears the medical plan and the surrogate’s response, and determines which of the two is in the patient’s best interest.
“In the U.S., there is more of a regulatory vacuum, so there is more difficulty resolving those cases,” says Foreman.
Bioethicists and providers can advocate for good legislative direction for providers to use when patients haven’t named a specific decisionmaker. “If you have excellent guidance, it doesn’t solve all the problems. But it does give providers support,” Foreman says.
Foreman says one of the biggest problems is that no one has ever asked the patient, ‘Who would you like to function as your decisionmaker when the time comes that you can’t make your own decisions?”
To some extent, advance care planning takes away the discretion of the substitute decisionmaker. “Why are we waiting until the patient is incapacitated to think about who might function in that role?” asks Foreman.
If providers suspect there may be a conflict, they can bring a nurse or social worker into the conversation. Both parties can document the patient’s wishes.
On the other hand, having a private conversation with a patient with no documentation of what was said “opens yourself up to a challenge you might not be able to withstand,” says Foreman. “You never want to find yourself in a situation where it’s your word against someone else’s.”
Bioethicists should not assume that the surrogate knows what his or her responsibilities are. “The notion that you are to make the decision that the patient would have made is a foreign one to most people,” says Klugman.
Instead of giving surrogates a bunch of options and asking them to choose, he adds, “we need to guide them to think about the patient and what that person values, in order to make a true substituted choice.”
Before asking surrogates what they think the patient would want regarding continuation or discontinuation of a specific treatment, the ethics consultant should first ask the following questions, says Brandt:
Are you aware of any experiences the patient had with family or friends who became seriously ill or injured? If so, how did the patient respond?
Do you remember any conversations you personally had with the patient regarding end-of-life choices?
Can you describe the patient’s religious, cultural, and personal beliefs?
“Then have the team speak to the likelihood of reaching clinical goals consistent with the patient’s beliefs and values,” says Brandt.
This approach lessens the emotional burden on surrogates because they don’t feel as though they are making a decision regarding ending or sustaining the patient’s life.
“Rather, they are providing useful information which allows the healthcare team to make medical decisions consistent with what the patient would have wanted,” says Brandt.
Lea C. Brandt, OTD, MA, OTR/L, Co-Director-MU Center for Health Ethics, University of Missouri—Columbia. Email: email@example.com.
Thomas Foreman, DHCE, MA, MPIA, Director, Department of Clinical and Organizational Ethics, The Ottawa Hospital, Ontario, Canada. Phone: (613) 737-8899 ext. 19967. Email: firstname.lastname@example.org.
Craig M. Klugman, PhD, Professor and Chair, Department of Health Sciences, DePaul University, Chicago, IL. Phone: (773) 325-4876. Fax: (773) 325-8430. Email: Cklugman@depaul.edu.