Surrogate decision-makers and end-of-life care: no 'right' answers, but plenty of tough choices
By Phyllis Maguire
SAN DIEGO—End-of-life care has never been easy, but today's physicians face some decidedly modern challenges, particularly when working with surrogate decision-makers. That dilemma is even more acute when patients' end-of-life wishes aren't known.
At an Annual Session presentation on end-of-life care, speakers and audience members agreed that in many ways, certain aspects of life in the early 21st century have complicated working with surrogate decision-makers.
As one audience member pointed out, both physicians and surrogates now are "victims of technology" when it comes to making end-of-life decisions. He explained that when physicians had to surgically implant feeding tubes, for example, surrogates could readily see their loved ones were too weak for invasive surgery.
Now that surgery is no longer required, however, it is easy to overlook the fact that intubation is a serious procedure with far-reaching consequences. "We have a technology that makes it very simple," he said, "but it doesn't make it right."
Another modern trend—today's far-flung families—has also made the decision-making process more complicated. One attendee said that some surrogates—typically adult children or other relatives—live too far from patients to be involved in their daily lives.
"Many of them carry a lot of guilt because they've been separated from the person who's dying," he explained. "They want to use their role of surrogate to correct all the wrongs of the past, and together we end up doing more than is really practical."
The challenge, both speakers and attendees agreed, is to get past these problems and develop a working relationship with your patient's surrogate decision-maker. Many emphasized the need for physicians to remain flexible and open to surrogates' wishes.
"It is naive to think that there is one right choice in these very difficult cases," said Jay A. Jacobson, FACP, chief of the medical ethics division for the internal medicine department at the University of Utah School of Medicine in Salt Lake City and a member of the College's Ethics and Human Rights Committee. "There are only tragic choices. No matter what you do, the process will end in death and loss."
Standards and strategies
While state laws and hospital protocols vary, panelist and ACP Ethics and Human Rights Committee member Daniel P. Sulmasy, FACP, outlined several standards physicians and surrogates can use when making end-of-life decisions without clear written or oral directives. One standard, known as "substituted judgment," encourages surrogates to try to extract end-of-life preferences from what the patient said about his or her wishes or the dying person's background and values.
When there is little or no evidence of what the patient would have wanted, you can apply the "best interests" test, which is based on the ethical principle of beneficence. "This standard encourages us to make decisions for our loved ones based on what we think is best for them," Dr. Sulmasy said.
A handful of states including New York and Missouri, however, use the "clear and convincing evidence" standard. "In some legal jurisdictions, to remove a feeding tube, you must have clear and convincing evidence that the person wouldn't have wanted to be tube-fed," he explained.
Encouraging surrogates to talk about what patients were like when they were active and healthy can open a window on patients' wishes.
But even in New York, where Dr. Sulmasy practices as chair of ethics at St. Vincent's Hospital Manhattan, "there is a lot of variation on how well providers apply that high legal standard clinically."
That leaves physicians in the tough position of having difficult and often blunt discussions with patient surrogates, often at the same time they are facing intense pressure from medical staff.
Panel members and session attendees offered the following strategies to help surrogates make the best end-of-life care decisions for loved ones.
Pay attention to surrogates' plight. Start every discussion by acknowledging how much stress surrogates are facing.
"It's critically important to express empathy," said Dr. Sulmasy. "Start by saying, 'It must be very difficult for you to see your dad like this,' and ask about the last death in their family." Establishing an empathetic relationship helps convince surrogates that you're not an adversary, he added—and it diffuses the tension that can build between family members and medical staff.
Dr. Sulmasy notes that establishing an empathetic relationship can diffuse the tension that sometimes builds between family members and medical staff.
At the same time, however, physicians need to be frank. "Many family members see the patient's eyebrow twitch or big toe move and think he or she is on the road to recovery," said William E. Golden, FACP, Chair of the College's Ethics and Human Rights Committee.
To counteract that kind of false hope, directness is often the best way to proceed. In one role-playing session, the "physician" took the hand of the audience member who was playing a patient's wife and gently but firmly said, "Your husband is dying."
Ask about surrogates' fears and concerns. In the same role-playing session, the patient's "wife" kept insisting that the physician employ the entire arsenal of medical technology to keep her husband alive. She eventually admitted that she was most afraid of being alone after many years of marriage.
Convincing surrogates to talk about their fears can be particularly helpful when it comes to decisions about feeding tubes. Even family members who choose not to intubate a patient are often horrified by the prospect of "starving" a loved one to death.
"Everyone equates food with love," one physician said. "We need to get those feelings out in the open."
Once physicians acknowledge surrogates' fears, they can share their own experiences with other patients, as well as medical evidence.
Many surrogates don't realize, for example, that many of the joys associated with eating—the pleasure of taste and the sociability of sharing a meal—are no longer options for terminally ill patients. They also may not know that while feeding tubes may prolong life, they do not improve patients' quality of life or prognosis—and can lead to aspiration.
Try to help surrogates discern what the patient would have wanted. Because many families are afraid to talk about death, family members often feel left in the dark about what patients would consider appropriate end-of-life care. Encouraging surrogates to talk about what patients were like when they were active and healthy can open a window on patients' wishes.
"If you stimulate their memory," Dr. Golden said, "you often get hints about how the patient would want to proceed."
He recalled one patient who had been an avid fisherman before having several strokes. When family members were asked to talk about how much the patient loved the sport, they came to understand that the formerly vigorous man would have not have chosen a drawn-out existence tied to tubes.
At the same time, Dr. Jacobson pointed out that talking about the patient often gives you insight into the surrogate. What values and beliefs they bring to the process may be as important as medical evidence in choosing end-of-life therapies.
Help surrogates "turn the corner." Encouraging surrogates to talk about the patient helps in other ways. One audience member said he found a suggestion from a member of his hospital's ethics committee extremely useful: Help family members "turn the corner." Encouraging them to talk about their once-vibrant loved one helps them acknowledge that the life they cherish is now in terminal decline and is about to end.
For physicians, who are used to quickly switching from acute to palliative care, the approach may seem long and drawn out. "It feels like it takes too much time," the audience member said. But often, he added, surrogates who have had time to accept the fact that the patient is dying will decide within a day or two to end heroic measures and let nature take its course.
Acknowledging that a loved one is dying can also help curtail surrogates' demands that "everything" be done. "We will do 'everything' that is appropriate for someone in that stage of illness," said one physician during a role-playing session. "We can concentrate on what the goals should be at this point in the patient's care."
Helping surrogates confront the fact that death is imminent can also lead to more constructive strategies. Dr. Jacobson pointed out that many nursing homes have mandatory feeding tube policies to protect them from liability. For one patient's family, being confronted with that policy—and learning that a feeding tube might prolong suffering—was all they needed to decide to take the patient out of the nursing home and bring him home to receive hospice care.
Keeping family members talking may also help you avoid one of the worst end-of-life care dilemmas: surrogates fighting over how to proceed. When surrogates have reached a deadlock, Dr. Sulmasy suggested calling a family meeting that involves the hospital's ethics committee. The goal is to keep the impasse from heading to court.
Share your opinion, but let the surrogate decide. Because it can be hard to relinquish control, expect to feel conflicted. One audience member noted that trying to influence surrogates' decisions—to withhold a feeding tube, for instance, or to stop futile life-support—smacked to him of paternalism.
It is "flat wrong," he said, to try to change surrogates' minds about prolonging loved ones' lives, even if their decisions may be emotionally and financially draining for medical staff and institutions.
Another physician admitted that while she believed futile care robbed dying patients of their dignity, she often felt guilty about persuading surrogates to end heroic efforts.
"I feel that I'm getting my way," she said. "I feel guilty because their decision means that I don't have to get up at 4 a.m. to answer that code."
Dr. Sulmasy agreed that end-of-life care produces conflicts for physicians, along with unavoidable emotional involvement.
"If you feel nothing," he said, "it's time to hang up your stethoscope and go home. You've lost it already."
He noted, however, that there is a very wide range between manipulation and persuasion, and that "persuasion is what we're allowed to do." Not only are physicians permitted to give their opinions, he continued, they owe it to struggling surrogates to share their professional opinions.
"If your biomedical judgment is that a therapy is inappropriate, you're justified in very firmly saying so," he said.
And one audience member pointed out that the ethical challenges associated with surrogate decision-making show how important it is to have frank end-of-life discussions ahead of time with patients.
"Discussions with the patient and with family members," the physician said, "should start long before medical problems become this advanced."
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