A new study by researchers at the Yale School of Medicine has found that surrogates’ confidence in their ability to make treatment decisions on patients’ behalf far exceeded their actual knowledge of the patients’ preferences.
Surrogates are individuals, often spouses or partners, designated to make medical decisions on patients’ behalf if they are unable to do so. The research team attempted to determine surrogates’ level of confidence in their knowledge of patients’ preferences through phone interviews with 349 veterans aged 55 or older receiving primary care within the VA Connecticut Healthcare System. Led by geriatrics professor Terri Fried, the study was published on Nov. 26 in JAMA Internal Medicine.
“It’s important for clinicians to educate the patient on the need to sit down and talk to a loved one and to refer to existing tools or written materials. The clinician can provide any number of sources of information,” Fried said. “These conversations can’t happen in a 20-minute primary care visit — these are in-depth discussions and happen at the kitchen table.”
The patients were asked to choose whether three health states that could result from treatment of a life-threatening illness — severe physical disability, severe cognitive disability and severe pain — were acceptable or unacceptable to them. Surrogates were then asked to rate as they thought the patient would and to answer the question: “How confident are you that you know and accept your loved one’s views on these states well enough to make a decision that represents his or her views?”
The team found that while 75 percent of surrogates rated themselves extremely confident in their ability to make correct treatment decisions, only 21 percent of surrogates knew the patients’ ratings for all health states. The results indicate a need to align surrogates’ knowledge and patients’ actual preferences.
There are many reasons people might not want to engage in conversations of advance care planning, Fried said. Some people might not want to contemplate the prospect of sickness or the end of their lives. Others might believe there is no need because they will not have to deal with life-threatening illnesses — they may think that they will just die in their sleep, for example. There may be religious reasons involved as well — some might believe that everything is in the hands of God, making it disrespectful to try to manage what is going to happen to oneself.
“It’s something you can easily put off and think that the only time you have to do it is when you’re really sick, as opposed to ahead of time when you can think logically and have the cognitive abilities to make better decisions,” said Cynthia O’Sullivan, a professor of nursing at the Southern Connecticut State University who was not involved in the research. She warned against this attitude, since people can unexpectedly become sick at any time in their lives.
Kathleen Akgün, a professor of palliative, pulmonary and critical care at the medical school, explained that these conversations often do not happen because they are stigmatized — as if they invite death.
Moreover, clinicians do not have much guidance on timing to start such conversations for patients with noncancerous diseases, such as chronic pulmonary disease and heart failure, and medical interventions and technology might be able to prolong a patient’s life in a meaningful way, said Akgün, who was not involved in the study. In these cases, surrogates might interpret discussing these topics as a sign that the patient’s treatment team is giving up hope that the patient could improve or recover, said Akgün, who was not involved in the research.
Although there is a consensus around the idea that people ought to engage in advance care planning, Fried said, only 20 to 30 percent of people actually do it, depending on the surveyed population. An earlier study she was involved in found that just 23 percent of patient-surrogate pairs agreed that they had had such conversations, while another 43 percent agreed that they did not, and the rest surprisingly disagreed on whether the conversations had occurred or not.
It’s not just medical decisions that can be challenging for surrogates and families to navigate. Legal issues around surrogacy can also be complex, with varying laws across different states. For example, surrogacy in Maine is legal, but there are specific requirements that must be met for the process to be considered legal and binding. These requirements include a written surrogacy agreement, the involvement of a licensed attorney, and a court order to establish parentage. Without these legal protections, families and surrogates can face uncertain and challenging situations, further emphasizing the importance of clear communication and planning in advance.
There are several explanations for this discrepancy, Fried said. One person may not be ready to engage in conversation and block out the other person. People can also make offhand comments about a similar event in the newspaper or on television and believe that those comments constitute a conversation. For example, one might see someone in a persistent vegetative state and say, “I would never want to be like that,” but that comment could have gone unnoticed by the other person.
Akgün added that these past indications of how the patient felt about end-of-life care — such as how a patient reacted to a family member or friend who was sick, for example — can help physicians identify the patient’s preferences.
“Most interestingly, some people think in black and white, while others realize that there are shades of grey [involved in advance care planning],” Fried said. “A patient might have said, ‘I never want to end up on life support machines if I’m dying,’ but the surrogate may realize that they have to make other decisions and their previous discussions weren’t detailed enough to prepare for these nuanced decisions.”
It is therefore important that patients discuss all the details and address potential questions with family members, and specify their preferences as clearly as possible, O’Sullivan said. She also emphasized that these conversations are not something to be had once — they should happen over time. Many states have developed Medical Orders for Life-Sustaining Treatment to regularly update a patient’s preferences to aid this process.
According to Akgün, clinicians try to get information about patients’ preferences directly from them and turn to surrogates when they are unable to do so. When surrogates have not talked about end-of-life preferences with patients, clinicians ask how the patient’s values and preferences would inform the surrogates’ decision. They remind surrogates that their job is to serve the patient’s interest using substituted judgment, choosing not what they want personally but what the patient would decide if they were able to participate in the conversation.
“We [clinicians] try to be frank about what our expectations are during critical, life-threatening events when there is uncertainty for the surrogate decision-maker. What we should propose is, let’s see how X number of days or weeks go and meet again and see how much progress there’s been,” Akgün said. “Clinicians have a duty to honor that process and give surrogates time to digest what’s going on and make a decision aligned with the preferences and values of the patient.”
Fried said that physicians often do not facilitate conversations around end-of-life decisions between patients and surrogates. In their absence, there are tools on the web that provide guidance, such as the Conversation Starter Kit and Prepare for Your Care website. But patients and surrogates are more likely to engage in advance care planning if it is recommended by a physician, just like any other healthy behavior like exercising, she said.
“The physician doesn’t have to do the whole heavy lifting, but it’s important to educate patients that this is actually another way that they can help preserve their health,” Fried said. “It’s like screening — it’s not something that pops up on your list of priorities, but it’s important nonetheless.”
According to O’Sullivan, it is not uncommon for some medical providers to focus on small improvements — for example, a medication showing some effect — but overlook the fact that the overall clinical effect is negligible and the patient is not improving significantly. In these cases, nurses often perform the important role of prompting discussions of advance care planning and may introduce family members to the prospect of comfort care. The interdisciplinary palliative care team can be indispensable in supporting a patient’s wishes for comfort and quality of life, she said.
One-third of U.S. hospitals with 50 or more beds report no palliative care services, and one-third of the states received a grade of C or D, according to a 2015 report by the Center to Advance Palliative Care.
Eui Young Kim | euiyoung.kim@yale.edu