Surrogate decision-makers are central to the decision-making process at the end of life. The end-of-life decision-making process includes preparation and iterative discussions with important stakeholders after a surrogate decision-maker is selected by the patient.1 The selection of a surrogate is an important process that has implications to receiving care that is congruent with a patient's wishes. Often, patients select a person who knows them the best,2 which is often a family member or spouse, but also may include friends who have become family. Surrogate decision-makers often rely on the health care team as a source of decision support.3,4 Health care providers would like to know more personal details about patients that include their values, support system, communication preferences, understanding of their illness and treatment, and advance care planning (ACP) wishes.5 Further, surrogates have identified that patients expressed wishes as a source of decision support through informal ACP discussions or written advance directives.
Despite these sources of support, engagement in these decisions has been shown to negatively impact the mental and physical health of surrogate decision-makers for months and sometimes years.6 Tensions often arise within families when consensus on treatments cannot be reached.7 There can be a disconnect between patient and surrogate priorities for care, where patients prioritized physical and emotional needs and their caregivers prioritized emotional and social needs.8 Although the health care team and family have been described as providing information about disease, treatment, and prognosis that makes surrogate decision-making easier, other ways in which they support decision-making are less well described.9
Advance care planning interventions are predominantly focused on encouraging patients to completing written forms, whereas providers engaging patients in serious illness communication can provide a better ACP result.10 In addition, surrogates are often excluded from ACP interventions, when ultimately they will likely be the one aiding in end-of-life decision-making.11 A study by Bakke and colleagues12 identified that surrogates would like more training and preparation for their role as a surrogate decision-maker, but most ACP interventions lack this training.
Since 2010, ACP interventions have included facilitated discussions, educational videos, written education, or clinical training.13,14 A successful intervention that includes surrogate involvement is the FACE intervention that includes a facilitated conversation utilizing the Respecting Choices program and completion of a Five Wishes document.15 These interventions are focused on eliciting patient's wishes and sharing those with surrogate decision-makers, but they lack identifying the support that a surrogate may need during the decision-making process. Therefore, the purpose of this study was to explore the decisions that surrogate makers were faced with and how they were supported to make decisions. Decision support was not predefined in the study. Surrogate decision-makers were encouraged to identify who helped them in making decisions for the patient and what, if anything, made decision-making easier. If more were known about surrogate decision support and other types of surrogate support, these could be incorporated into discussions and family meetings at the end of life.
We conducted a secondary analysis of 13 transcripts of after-death interviews with surrogate decision-makers of terminally ill patients who, prior to their death, had identified a family member or friend as the person who assisted them with decisions about health care. Transcripts were from the TAILORED (Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions) study, a mixed-methods study that evaluated the impact of a brief nurse-led discussion in the clinic to promote patient-surrogate discussion about patient preferences for control over treatment decisions and involving family or friends in these decisions.16 In the TAILORED study, patients who identified a family member or friend as a person who helped them make decisions about their health care completed a survey indicating their preference for engaging this person as a surrogate decision-maker in making treatment decisions should they become too ill to make decisions for themselves. Surrogates were interviewed separately about how they thought the patient wanted them to be involved in treatment decision-making. A subset of surrogate decision-makers was also interviewed qualitatively concerning what decisions were made near the end of life and how the surrogate was involved in making these decisions. Surrogates were asked what or who helped make decision-making easier. The study was approved by the Johns Hopkins Medicine Institutional Review Board, and the secondary analysis was included in this approval.
Participants and Recruitment
For the parent study, we recruited patient-surrogate dyads from a metropolitan hospital in the Mid-Atlantic region and a metropolitan hospital in the Midwest in the United States. Patients needed to have a terminal condition—amyotrophic lateral sclerosis (ALS) or stage III or IV pancreatic cancer; stage IV gastric, biliary, or hepatic cancer; or stage IV colorectal cancer (excluding those with isolated hepatic metastases) or within 8 weeks of being hospitalized for class III or IV congestive heart failure. These criteria were established to include patients with a prognosis of at least 50% 2-year mortality. Patients were asked if they had a family member or friend who was involved in helping them make decisions about their health care. Family was defined broadly to include those related by blood and marriage, significant others, church family, or close friends. Patients were included if they could identify a family member who was likely to be involved in treatment and care decisions near the end of life, be able to speak English or Spanish, and be 18 years or older. The family member had to agree to participate for the dyad to enroll.
For the qualitative portion of the parent study, we purposefully selected a subsample of family decision-makers who varied by sex, race, age, illness of the patient, relation to the patient, and whether they had received the study intervention encouraging discussion about the patient's preferences for engaging the surrogate in decision-making.
In the parent study, the purpose of the interviews with family surrogate decision-makers was to determine if the surrogates had been engaged in decision-making at the level desired by the patient and about how confident the surrogate was in assuming the decision-making role. Interviews with surrogates after the patient's death were conducted over the phone by a research nurse team member experienced in conducting semistructured interviews using an interview guide focused on decision-making for consistency. Examples of questions are as follows: “Were any important decisions made about the treatment or care of your loved one in the last 2 weeks of life?” “How were those decisions made?” “To what extent were you involved with those decisions?” “Who else was involved?” “What other factors influenced these decisions?” Was there anything that helped make the decision-making easier? Interviews lasted approximately an hour and were recorded and transcribed verbatim by a professional transcriptionist who also deidentified the transcripts. The transcriptions were validated by the interviewer before analysis. All 13 interviews conducted were used for the present study.
Three investigators used an inductive approach, independently coding the full transcripts to understand the support that the surrogate decision-makers received as they made decisions for the patient at the end of life. This approach was taken to identify categories from meaning inherent in the data rather than prespecified categories. Investigators then reviewed their individual codes together and reached consensus on the codes and their definition. They retained a list of these codes and refined them and added new codes as the analysis progressed. They also identified common themes across codes. They then defined these themes and continued to review the broad codes using the constant comparative method until no new themes emerged from the data.17 Exemplar quotes are provided to illustrate each major theme. All authors reviewed the exemplar quotes to reflect the various individuals supporting family decision-makers and the type of support they provided.
We conducted 5 interviews in the Mid-Atlantic Medical Center and 8 in the Midwest Medical Center for a total of 13 interviews between 2010 and 2014. The patients for whom the family surrogates were making decisions included 7 males and 6 females who ranged in age from 46 to 85 years, with a mean age of 61 years. Nine identified as White, and 4 identified as Black, with one of each race also identifying as Hispanic. Seven were married. Eight of the patients had gastrointestinal/pancreatic cancer, 4 had advanced heart failure, and 1 had ALS. The family surrogate decision-makers included 5 wives and 3 husbands, 1 son, 3 daughters, and a friend who was female. Surrogates ranged in age from 43 to 84 years with a mean age of 55 years. Nine of the 13 surrogates received the study intervention.
The analysis of the transcripts yielded 3 major themes regarding surrogate decision-maker support: (1) decisions, (2) decision-makers and support persons, and (3) types of support valued by the surrogate. The decisions that the surrogate decision-makers discussed were regarding initiating or discontinuing treatment, funeral planning, accepting palliative care, and, in some cases, hospice care. Surrogate decision-makers sometimes included other family members who shared this role. Some surrogates reported that the physician made some decisions independent of them. The types of support that surrogates valued ranged from information about treatments and prognosis from the medical team to affirmation from friends that they were doing the right thing.
Surrogates described initiating and discontinuing treatments as a series of decisions, rather a decision focused on one particular treatment. Surrogates who decided to begin palliative care or transition the patient to hospice care often referred to pain and other symptoms as being out of control as the impetus for this decision.
Decision-Makers and Support Persons
Surrogates described consulting with members of the medical team for information about prognosis and treatment options.
Participant 7: “I had the confidence that if I couldn't make the decision, I knew someone that could help me… to give me the guidance that was necessary for me to make the decision, whether it was the nursing staff or the primary care physicians, or the doctor, or you know—I knew that was someone that if I was in doubt, that I could talk to.”
Surrogates also reported consulting with nuclear family members, distant family members, church family, friends, a funeral director, and a lawyer.
Participant 5: “Any decisions I would say the 5 of us kids, if we weren't there, …we kind of talked to each other and everybody, kind of got their chance to say what they, whether they agreed or didn't, what their thoughts were.”
Types of Support Valued by the Surrogate Decision-Maker
Surrogates highlighted several types of support that they valued including support for decision-making and other types of support not directly related to decision-making. Advance directives or informal ACP conversations with the patient about treatment preferences were seen as relieving surrogates from making these decisions based on their own judgment. Information from the medical team about prognosis was also valued, as was affirmation that the surrogate was doing a good job in the decision-making role.
Advance directives allowed the surrogate to frame the decisions made as carrying out the patient's wishes instead of determining what decision was best for the patient:
Participant 2: “Well, he made known his wishes so that, when it came to that, that he didn't want to linger on and if there was no hope, he didn't want any expensive life support things or anything like that. He had a living will that stated that.”
In contrast, other surrogates valued information provided by the physician or other health team members and then made decisions based on what the surrogate thought was best for the patient.
Participant 1: “I also had an agreement with the doctor that if they had reached a point where there was just nothing they could, that I knew that had done everything, then I would shake his hand and thank him for what he'd done and that would be it. And that's what I did. I reached out my hand… and thanked him, and we knew the only decision left was to take him off the heart pump and the respirator and that's what we went and did.”
One type of support cited as extremely helpful by some surrogates was the affirmation they received from others that they were doing a good job in their surrogate role.
Participant 9: “I would have conversations [with friends]; they would lift my spirits. Oh, you know—‘it's okay, you're doing the right thing. You're hanging with him, you're going to his doctor's appointments with him, you are doing what you're supposed to be doing, you're okay.’ I mean they would give me words of inspiration, and I have several friends that I had conversations with.”
Still another surrogate described receiving respite care for the patient and being part of a prayer chain. Both were uplifting experiences.
Participant 2: “We have a prayer chain, every time, with any procedure while he was in the hospital 3 months with his LVAD (left ventricular assist device) and had some complications and every time I'd get on the prayer chain, and they would spread it around the community and that was a big help.”
This study explored how surrogate decision-makers are supported as they make decisions for a loved one at the end of life. Surrogates found ACP conversations and advance directives completed by patients helpful as a source of support because they described the patient's wishes in detail. Surrogates received decision-making support from nuclear and distant family members, church family, friends, and medical professionals. The main form of support that surrogates sought out was affirmation that they were making decisions that were correct and in line with the patient's wishes. This study fills a gap in the literature that explores the support that surrogates found helpful in making end-of-life decisions.
Although the value that surrogates place on information support from the medical team has been reported in other studies, the positive value that surrogates placed on advance directives is in contrast with other findings. Some have concluded that advance directives are ineffective because treatment decisions near the end of life are often unpredictable, and directives are often not specific enough to guide decision-making.18 In addition, patient's wishes may change over time, so written directives may not reflect the patient's wishes at a later point in time.19 Others have argued that the approach to ethical decision-making that lies behind treatment directives such as living wills and models of substituted judgment is philosophically flawed20 and misses the most important aspects of decision-making at the end of life.21,22 Nonetheless, in this study, several surrogates talked about how helpful it was to have a living will or to have had previous conversations with the patient about the patient's treatment preferences. Even if this information did not address the specific treatment decisions the surrogates were faced with making at the end of life, the surrogates found them helpful, either because they gave them insight into the patient's preferences on broader issues such as symptom management or quality of life, or because they allowed the surrogates to see themselves as having behaved in an ethically justifiable manner, honoring the patient as a person, even if the documents did little to guide actual decision-making.
Receiving information about prognosis and treatments from the medical team was highly valued, but so was going over this information with friends who were medical professionals or lay friends who had gone through the illness and death of a family member recently. These secondary discussions seemed to help the surrogates to better understand the information from the medical team. Or perhaps they were just comforted to know that others like them had successfully served in the surrogate decision-making role.
Being validated as a good surrogate arose as an important type of support. Surrogates talked about feeling respected by the physician for their role as decision-maker, and one surrogate said that her spirits were uplifted when a friend took the time to tell her that she was doing a good job as a surrogate. This is consistent with the findings of Li and colleagues,23 who studied surrogate decision-makers of patients with chronic critical illness and noted the importance of having someone acknowledge to the surrogate the complexity of the decisions that they were making.
Study Limitations and Strengths
Study limitations include that 9 of the 13 surrogates interviewed had received the intervention in the parent study promoting patient-family discussion about the patient preferences for involving the surrogate in decisions at the end of life. Therefore, surrogates' reports that discussions with the patient about preferences are helpful in guiding the surrogate's decision-making at the end of life may be overrepresented in this sample. This is a secondary analysis of qualitative transcripts resulting in a new aim of exploration and data that were collected 8 to 12 years ago. This study took place before the COVID pandemic; thus, it does not reflect the impact of restricted family visits on decision-making and decision-making support that took place. The strengths of the study include its involvement of surrogate decision-makers of patients who vary by race, ethnicity, and sex with 3 diseases that represent a gradual (ALS), rapid (advanced cancer), or variable (advanced heart failure) decline in health from the point of diagnosis to death.
Conclusions and Practice Implications
Despite the shortcomings of advance directives in their lack of precision, surrogates still found that they provided them with some direction and greater confidence in end-of-life decision-making. Nurses, the health care team member who spends the most time with patients and families, are in the ideal position to ask surrogates what they have gleaned from these documents, as well as previous discussions with the patient. They can then lead the integration of this information into decision-making. Nurses, physicians, and other health professionals can also validate that the surrogate is doing a good job in this important decision-making role, by simply saying things such as “I think that we have a better understanding of what your father would have wanted, thanks to your careful explanation of his wishes and values. You are doing a very good job in making (or helping us to make) the best decisions for his care.” Finally, there are numerous technologies at the bedside that the team can use to engage others who were described as valuable by the surrogates in this study, such as other family, friends, and the faith community. MyChart and other electronic health record communication tools can support these interactions to facilitate surrogate decision-making support.
The authors thank the study participants for sharing their experiences.
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