Among 183 eligible patients identified for the study, the surrogates of 19 (10%) were not approached at the request of the attending physician and 22 (12%) of the surrogates declined to participate. In total, 142 (78%) patients had surrogates who participated in the study, with a total of 179 surrogates enrolled.
The demographic characteristics of the surrogates and patients are shown in the . The sample was diverse in terms of gender, race/ethnicity, religious affiliation, and education level. Patients’ mean Acute Physiology and Chronic Health Evaluation II score at the time of enrollment was 30 ± 4. Overall, 45% (64 of 142) of patients died during the hospitalization. In response to the question regarding the chances that the loved on would survive the hospitalization, surrogates’ mean prognostic estimate was 69% (SD, 29.6; range, 2% to 100%).
Demographic characteristics of patients and surrogate decision-makersa
Two percent (3 of 179) of surrogates reported basing their view of the patient’s prognosis solely on the physician’s prognostic estimate; almost half of the interviewed surrogates (47%) reported basing at least part of their own prognostic estimates on prognostications and information given to them by a physician. The form and specificity of that information varied. In some instances, surrogates reported hearing direct pronouncements about the likely course of their loved one’s illness. For example, one surrogate reported, “Yeah, he told me that the prognosis was not good and most patients who are transplant patients, usually, when they get this kind of infection, they usually do not survive, is what he told me.” Others reported specific numerical estimates, as in the following example. “Basically, what we’ve been told by the doctors is that the aspergillus fungal infection that she has a 90% mortality rate. And when I look at, you know, what her chances of survival are, I’m looking at that 10%…. I mean, they will not just come out and say, ‘I think she has a 10% chance of surviving.’ You know, they’re not going to say that. But what they say is, ‘This infection has a 90% mortality rate.’ And that’s what they said.”
More commonly, however, surrogates reported going through an inferential process to arrive at a prognosis, working from less specific information or a sense of how the physician felt about the patient’s chances. For example, one surrogate explained that the doctors avoided putting specific numbers on her loved one’s chances. “You know, only one doctor has really kind of given us a percentage. She said it’s really tough and said it was…. I go, ‘Is this day by day?’ and she’s like, ‘No, this is hour by hour.’ And, ‘what are the chances?’ And she said, ‘Fifty percent.’ But you know, most of the doctors are talking very clinically about little steps here, little steps there, and if we can kinda move in that direction, then things’ll be good. But you know, they’re not really giving you— giving us percentages, you know?”
Others pointed to the doctors’ words as providing only broad estimates but nothing specific. “They had just said that it’s not good (5-sec silence) … But they did not say that it was impossible. They just said that it wasn’t—the chances weren’t great, that she was critical.”
Most surrogates cited at least one other factor that informed their beliefs about the patient’s prognosis. We identified five other main sources that contributed to surrogates’ estimations of the patient’s prognosis: 1) patient’s unique intrinsic qualities and will to live; 2) interpretations of the patient’s physical appearance or status; 3) the patient’s history of illness and/or survival; 4) surrogates’ beliefs in the power of their bedside presence; and 5) optimism, intuition, and faith. We provide examples of each of these factors in detail.
Patient’s Intrinsic Qualities and Will to Live
Twenty-seven percent (49 of 179) of surrogates believed that certain unique attributes of the patient predicted their likelihood of survival. Having a “stubborn” or “determined” disposition and being stronger than most people were key factors for some surrogates. One husband said, “I chose the high number because, basically, I know that my wife is a fighter beyond the normal person.” Another described the patient as “ … just a strong person. She’s … I do not know, she just … That’s her personality. She doesn’t give up much…. I just know she has really strong will.” Similarly, there were some family members (10 of 179; 5.5%) who pointed to their loved one’s fading fortitude to explain their belief about her poor prognosis. One family member said, “I do not know if my aunt has the fight left in her.”
Interpretations of the Patient’s Physical Appearance or Status
Some surrogates relied on their own observations of the patient’s physical appearance to inform their belief about the patient’s prognosis. Sixty-four percent (114 of 179) mentioned their personal observation of the patient’s physical appearance as one source of information. Surrogates noted such aspects of the patient’s appearance as facial expression, hue of the skin, apparent comfort or discomfort, and degree of synchrony with the ventilator. Temporal changes (or the lack thereof) in the patient’s appearance also were given prognostic significance. The following example exemplifies both aspects of this: “He just looks really, really sick. He doesn’t show any improvement from day to day. I mean, the first day, you know you figure, well, he’s gonna be really sick, but the second day, you think, well maybe he’ll be a little bit better. Well each day it’s like he’s just staying the same. So, you kinda get discouraged when you do not see any improvement.”
Likewise, a patient who looked better or seemed more active was understood as having a better prognosis. “I think he has 90% because— because today in the morning, he opened one of his eyes when we were talking to him. And it seems like, when we go in there and talk to him, he kind of gets a little desperate for him to— he wants—like he wants to talk to us.”
The patient’s previous physical fitness and age were also used as indicators of prognosis, according to 37% (67 of 179) of family members. For instance, as one family member noted, “And he’s— before this one illness, he’s never really been hospitalized before, he’s always been very healthy. And he’s athletic and strong and participates in a pretty good exercise program, before this illness.” Similarly, being relatively young was often seen as an indicator of a good prognosis. “And she’s a young woman. She’s only 57.” Physical status and age also combined to influence prognostic estimates. “Well, I think if he were 10 yrs younger, his body would be stronger. Ten years ago, he was in pretty good shape. So I think that he would not have been as likely to have gotten the pneumonia, the way he did.”
Knowledge of the Patient’s History of Illness and/or Survival
Many surrogates relied on their personal knowledge of unique attributes of the patient to inform their prognostic estimates (51 of 179; 28%), such as the patient’s history of illness and previous survival in the face of severe illness. This was particularly so for surrogates who perceived an optimistic outcome for their loved one. As one remarked, “He beat cancer so I feel very strongly that he can beat this pneumonia.” Similarly, another family member noted, “But it’s kind of interesting because she’s been in this situation, very similar, many times and she’s somehow defied the odds.”
As these comments suggest, surrogates’ use of other sources to inform their own prognostic estimates were rarely straightforward applications of statistical likelihood or simple “facts”’ Rather, surrogates’ views were shaped by an understanding of the unique attributes of the patient that may not be accessible to physicians. These types of beliefs and understandings may differ from the clinical experience and population-based evidence that the physician may bring to the discussion.
Power of the Bedside Presence
The belief that one’s presence and support could improve the patient’s prognosis was discussed by 13% (24 of 179) of surrogates. Through their own positive thinking and support, these surrogates believed that they could improve the patient’s prognosis. As one explained, “Well, I think a lot of his surviving has been with the help of myself and my daughter. Not just the doctors and medicine, but the fact that we’ve been by his side, whenever we possibly can, and we have been talking in his ear, yelling in his ear, telling him to think positive. When he was jaundiced and in a coma, I kept saying, ‘Think pink,’ because he was so yellow and so sick. And I said, ‘You can do it. Mind over matter,’ you know, ‘The brain is powerful’ and, ‘Do not give up’ and, ‘You’ve gotta fight. You’ve gotta fight…. I want to bring you home.’ And I think that really helped him a lot.”
Others (5%; 9 of 179) reported that rallying the community of family and friends could also change the prognosis. The support of family and friends, support groups, and church groups were all mentioned as sources of optimism that tilted a prognosis more favorably. As one surrogate described, “So when we go in there and talk to him, we always say encouraging things and to keep fighting, because there’s that chance that he can make it through.” Similarly, another family member noted, “Because then it allows him to know that we’re here for him and that he’s more encouraged to fight, when he knows we’re there.” A few described the relationship as direct and causal: “I mean, the nuns came over here, with the priest, and they anointed the sick. And a couple of days later, she was okay.”
Optimism, Intuition, and Faith-Based Beliefs
Thirty-six percent (65 of 179) of surrogates used their own intrinsic optimism or pessimism. This “power of positive thinking” was strong and pervasive and seemed important to maintain even in the face of other evidence, such as physician’s prognostic estimates or how the patient physically appeared to be doing. As one family member said, “Because we want to be optimistic. I mean, we want to be positive. So that’s why we’re saying he’s going to have 90% of a chance to survive. We do not want to be negative.” For some, allowing themselves to think that their loved on will die was unacceptable. “It means that he will. That he’ll survive. And I do not want to think that he will not.”
Similarly, 4% (8 of 179) of surrogates based their estimates in their own pessimistic view of what will happen. For some, this was reported to be “just the way they see things,” sometimes despite the information from physicians. As one surrogate said, “I see that the chance of survival is slim, no matter what the doctors say.”
Nineteen percent (34 of 179) cited reliance on intuition or “gut feeling” to inform one’s estimates. Intuition informed both positive and negative estimates and seemed to mitigate— or even negate—any information to the contrary. Surrogates reported “just knowing” or having a strong sense that their loved one would survive, despite what the doctors said, as this family member explained, in light of a 50–50 estimate from the physician, “But in my heart, I think there’s more than a fifty chance that the doctors are giving us.”
For 20% (35 of 179) of surrogates, a faith in God overrode any other source of prognostic information, allowing the person to believe, against all odds, that their patient was going to survive. This faith was expressed as a belief in the power of prayer, in the power of prayer circles and community support for the patient, or as the presence of God working through the actions of the doctors, nurses, and hospital staff. Some surrogates believed that it was not only their faith but also the patient’s faith that would carry them toward recovery and health. As one parent described, “My daughter is very, very sick, but I believe her faith in God and her faith in being cured of this rare disease she has will— has given her strength to survive and to—to live.”
Two percent (4 of 179) reported a belief in the power of reciprocity, believing that their loved ones’ good behavior, kind actions, or helpful life work would result in a “favor” being given back from the universe. Some reported that their loved ones gave freely of their time to other sick people, that they used their humor or abilities to help others, and that this would somehow return to help them through their own struggles. As one family member said, “Good things come to good people so I’m gonna hope that—you know, call in some markers for his good behavior.”
Finally, in light of terrible odds and the realization that the patient was not going to recover, this expression of faith was termed as a belief in— or hope for—miracles. When they had little else on which to base an optimistic prognosis, 4% (7 of 179) of surrogates said they resorted to hoping for a miracle. “So the only thing we have left is a miracle. And before this, I really do not think I would have believed in miracles.”