Among 173 eligible patients, 12 (7%) were not enrolled at the request of the attending physician, and 16 (9%) surrogates declined to participate after learning about the study. The overall enrollment rate was 84% (). In some cases, a family indicated that more than one individual would be involved in surrogate decision-making; therefore, for 24 patients, two surrogates were enrolled, and for one patient three surrogates were enrolled (n = 171 surrogates). Of the 171 surrogates enrolled, two participants completed demographic information only. A total of 169 surrogates completed the full study protocol of viewing the videos and completing both demographic and postvideo questionnaires. Four interviews could not be analyzed due to technical problems with audiorecording; therefore, 165 interviews were included in the qualitative analyses.
Flow diagram describing the enrollment of surrogates.
The demographic characteristics of the patients and surrogate decision-makers who participated in the study are shown in and , respectively. The sample was diverse in terms of gender, race, ethnicity, religious affiliation, and level of education.
DEMOGRAPHIC CHARACTERISTICS OF PATIENTS
DEMOGRAPHIC CHARACTERISTICS OF SURROGATE DECISION-MAKERS (N = 169)
Overall, 56% (95/169) of surrogates preferred to receive a recommendation from the physician about whether to limit life support, 42% (70/169) preferred to not receive a recommendation, and 2% (4/169) felt both approaches were acceptable. We found no correlation between surrogates' demographic characteristics and their preference for receiving a recommendation.
Four main themes explained surrogates' preferences. These included surrogates' beliefs about what role is appropriate for physicians and surrogates in life or death decisions, their perceptions of the consequences of a recommendation on the physician-surrogate relationship, their beliefs about the decision-making process, and and their beliefs about long-term regret for the family.
The Appropriate Roles of the Physician and the Surrogate
Among the surrogates who preferred to receive a physician's recommendation, 51% (48/95) expressed that providing such a recommendation is a central part of the physicians' role. The 50-year-old brother of a patient with a mitral valve rupture explained, “[The doctor is] really leaning on my appreciation of the patient…but I'm also leaning on the doctor, with his background and experience.” Some surrogates expressed that a physician's unwillingness to offer a recommendation amounted to a “denial of responsibility to help in the process.”
In contrast, 79% of surrogates who preferred that the physician refrain from giving a recommendation expressed that doing so was beyond the appropriate role for physicians. For these surrogates, “it didn't seem appropriate” for a physician to lead surrogates toward a particular choice. One 59-year-old man said that a recommendation was not welcome because “I don't want to be led…into terminating my mom's life. I'll decide.” In addition, some believed that a physician could not know enough about a patient's life or values to make a meaningful recommendation. The surrogate of a man with liver failure put it this way: “The simple fact is a doctor cannot give you that kind of information…in no way do I believe that he can, at any point in time, assume in any way that he knows…he knows anything about the person, except for the medical condition and the outcome.”
A few surrogates objected to the provision of a recommendation in the video because the physician had never directly spoken to the patient and had no prior knowledge of the patient. As one surrogate explained, the surrogate “would be the one who would really have the information towards what the patient's desires would be, not the doctor.”
Several surrogates expressed a belief that physicians should enforce the family's responsibility to decide. For example, one surrogate expressed a belief that even if a surrogate asks for a recommendation, the physician should say “I am here to explain your options, but you need to make that decision for yourself.” Another wanted the physician “to put it back on [the surrogate], so that [the doctor] had no part in the decision-making.”
Consequences of a Recommendation on Emotional Experience and Physician–Family Relationship
The vast majority of surrogates (92% [87/95]) who preferred to receive a physician's recommendation mentioned at least one positive consequence the recommendation would have on the physician-surrogate relationship, the decision making process, or the families' long-term psychological well being. For some, receiving a recommendation “took some pressure off” families and meant that “the burden of the final decision isn't completely on the surrogate.” For others, a physician who offers a recommendation seems more “engaged,” “intelligent,” “concerned,” “communicative,” and “human.” One explained that by offering a recommendation, the “doctor gave 'em his mind,” whereas not offering a recommendation meant “the doctor didn't give her anything.” A few felt that by offering a recommendation, a physician seemed “more trustworthy.”
Conversely, 37% (26/70) of surrogates who did not want a recommendation believed that a recommendation would result in significant negative consequences on the physician–surrogate relationship or the surrogate's emotional experience. For example, one surrogate stated that a recommendation might make the process more difficult because “dealing with the recommendation…actually may have been harder,” particularly if the surrogate disagreed with the physician. One 62-year-old woman felt that a recommendation “diminished respect” for the family's intelligence and knowledge. Also, a few surrogates worried that families might “blame” the physician in the future if they later felt that limiting life support was the wrong decision.
Consequences of a Recommendation on the Decision-making Process
Forty-seven percent (45/95) of surrogates who preferred to receive a physician's recommendation felt that a recommendation would improve the quality of the decision-making process and lead to better substantive decisions. Some surrogates expressed that a recommendation would help them deliberate and come to the best, most informed decision through hearing the “perspective of someone with medical experience.” Said one surrogate, “the doctor is the expert on the end of life…and I think it's sensible to get an expert's opinion.” Others felt that although a recommendation was helpful, it was not binding: “His opinion would matter, since he was a doctor. But as far as making the decision though, I'd imagine it would lie with the family.”
Other surrogates appreciated the “emotional distance” of physicians, who could provide an objective, less “emotionally conflicted” view of the situation. These surrogates felt that a recommendation improved deliberation by providing “structure” for the process and also gave surrogates the “emotional permission” to consider limiting life support. The son of a woman with heart failure felt a recommendation served “just to assure you that it's not a bad thing to decide to…take him off a breather.” Also, several surrogates in this group believed that if physicians did not provide a recommendation, families may be unable to make the decision they knew to be correct for the patient.
In contrast, for surrogates who preferred that physicians not provide a recommendation, a prevalent concern was that a recommendation could hinder or impair the family's ability to come to the best decision. One surrogate stated that a recommendation did not give “the chance…for the family member to think.” The son of a 77-year-old woman with meningococcemia said, of the vignette in which the recommendation was offered: “I was kind of surprised that the daughter had the emotional strength…to say, ‘I don't feel comfortable making this decision right now.’ The more natural flow, I think, would've been for the daughter to have made the decision, whether she was comfortable with it or not.”
The surrogate of an elderly man with an aortic aneurysm explained that due to the authority of the physician, “Sometimes we don't listen to what we really feel. We'll just take their decision.”
Consequences of Recommendation for a Family's Future and Psychological Well-being
Five percent of surrogates (5/95) who preferred to receive a physician's recommendation believed that the potential for regret over a life support decision might be lessened if the physician offers a recommendation as part of the decision-making process. One surrogate put it bluntly: “[The doctor] helped me, showed in my mind, I'm not the one who's killin' her…and I would, in the long run, feel lots better.”
Conversely, 11% (8/70) of surrogates who did not want to receive a recommendation worried that families who followed a physician's recommendation to limit life support might regret the decision in the future, particularly if they felt that they were improperly influenced. One surrogate explained, “If you have someone swaying you…sometimes you'll make a decision based on what someone else is feeling and what they're saying. And then later, you have regrets.”
Several surrogates emphasized that the timing of giving a recommendation to limit life support is critically important. The spouse of a man with cirrhosis suggested: “Don't offer an opinion, give her a chance to assess what's really happening. Let it sink in and give her a couple o' days to just really figure out what's going on. And then come back and talk to her more.” A few surrogates who did not wish to receive the physicians' recommendation articulated that, if the doctor had a longstanding relationship with the patient, then a recommendation might be appropriate.