The Facilitated Values History

Abstract

Many patients who develop incapacitating illness have not expressed clear treatment preferences. Therefore, surrogate decision makers are asked to make judgments about what treatment pathway is most consistent with the patient’s values. Surrogates often struggle with such decisions. The difficulty arises because answering the seemingly straightforward question, “What do you think the patient would choose?” is emotionally, cognitively, and morally complex. There is little guidance for clinicians to assist families in constructing an authentic picture of the patient’s values and applying them to medical decisions, in part because current models of medical decision making treat the surrogate as the expert on the patient’s values and the physician as the expert on technical medical considerations. However, many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life. We present a framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients.

Many patients who develop incapacitating illnesses have not left oral or written directives about their treatment preferences (1, 2). Even when a patient has completed an advance directive, it often does not provide clear guidance regarding the actual medical situation. Therefore, others, generally family members with a close relationship to the patient, are asked to make judgments about which treatments are most consistent with the patient’s values (3). However, surrogate decision makers often struggle in this role (4–6) and experience substantial psychological burdens when making decisions for their loved ones (7). Empirical research suggests that surrogates make different decisions than patients would make for themselves in roughly one-third of cases (8, 9).

The difficulty arises because clinicians often treat the question “What do you think the patient would choose?” as relatively straightforward and fail to appreciate its emotional, cognitive, and moral complexity. However, there is little guidance for clinicians to assist families in constructing an authentic picture of the incapacitated patient’s values. This may be due in part to conventional views of medical decision making, which draw distinct boundaries between the expertise of physicians (e.g., technical medical judgments) and surrogates (e.g., the patient’s values) (10). Research suggests this division also exists in clinical practice: in audiotaped clinician–surrogate conversations, physicians frequently neither elicit patients’ values nor offer treatment recommendations (11, 12).

This conceptualization of the physician’s role is flawed. Although surrogates generally have significantly more knowledge of patients’ values and preferences than do clinicians (13), this knowledge is only part of what is required to fulfill the role of surrogate decision maker. Just as patients often need assistance in clarifying their values about difficult medical decisions (14), so too might surrogates need assistance to think through the patient’s values and to apply them to complex medical decisions. This is especially true for the high-stakes, emotionally charged decisions that surrogates are asked to consider for patients with advanced critical illness.

We explored diverse areas of scholarship, including bioethics, decision psychology, and medical communication science, to more comprehensively address these challenges. Using this literature and clinical experience, we developed the Facilitated Values History to help clinicians assist surrogates in constructing a comprehensive view of a patient’s health-related values and choosing a treatment pathway that is consistent with them.

Autonomous Decisions or Authentic Decisions?

A common misperception among clinicians is that respect for autonomy is the ethical principle that drives most decisions for incapacitated patients (15). However, a decision cannot be autonomous unless the patient actually made a specific choice in advance about the medical situation at hand. When the incapacitated patient has not previously communicated a relevant, applicable choice, as is generally the case in ICUs, clinicians cannot be guided primarily by respect for autonomy. Instead, when clinicians ask families “what do you think the patient would choose?” their goal is generally to make an authentic decision for the patient—a decision informed by knowledge of the patient’s values and motivated by an intention to deliver care that respects the patient as a person. This distinction is important because it highlights the need for clinicians to gain a robust understanding of the patient’s values before making treatment recommendations (16).

Values in Tension Near the End of Life

Although it is unquestionably true that most people have a “powerful desire to not be dead” (17), a growing body of research demonstrates the limits of this desire (17–23). Table 1 summarizes empirical research on values particularly relevant to end-of-life decisions and “states worse than death” (17–23). The relevant values are not the complete set of a patient’s values but what the patient values about being alive and what she is willing to go through for a particular chance to survive with an acceptable quality of life.

TABLE 1.

VALUES COMMONLY RELEVANT TO END-OF-LIFE DECISIONS

Domain of Health Values	Explanation of Value
Longevity	Living as long as possible
	Living until a specific goal is reached (e.g., birth in the family, return of a loved one from abroad)
Maintenance of bodily integrity	Avoiding having the body cut, attached to machines, or otherwise acted on by outside agents
	Avoiding prolonged dependence on life-sustaining treatments
Maintenance of physical function	Maintaining physical independence
	Maintaining specific physical abilities (e.g., driving, athletics, playing a musical instrument)
Maintenance of cognitive function	Being able to think clearly
Autonomy and independence	Being able to make one’s own decisions
	Being able to live at home
	Not living in a nursing home
	Avoiding burdening one’s friends and family financially, physically, or emotionally with one’s care
	Being willing to accept help when limitations occur
Social and emotional engagement	Participating in relationships
	Contributing to one’s social group
Avoidance of burdensome physical symptoms	Avoiding pain, dyspnea, nausea, or other symptoms
Adherence to religious or spiritual beliefs	Ensuring that treatment is consistent with religious precepts

Developed based primarily on work by Fried et al. (17), Patrick et al. (20), Pearlman et al. (21), and Karel et al. (22).

Advanced illness often raises tradeoffs between quantity and quality of life (24). For example, an intellectual may prefer being allowed to die rather than endure a life of severe cognitive impairment. Someone who views interpersonal interactions as the source of life’s value may opt against life prolongation when no longer able to maintain relationships. Individuals who highly value bodily integrity may believe that dependence on invasive medical technologies is undignified. Two central goals of communication with surrogates should be to understand the patient’s unique perspective on what gives life meaning and to recommend a treatment plan consistent with those values.

The Facilitated Values History

The following seven behaviors make up the Facilitated Values History. Each is explained in terms of barriers to good decisions and actions the clinician can use to target them. Table 2 contains sample language for each action.

TABLE 2.

THE FACILITATED VALUES HISTORY

Behavior	Specific Actions	Examples
Attend to surrogates’ emotions	NURSE mnemonic	N-ame the emotion: “You seem upset.”U-nderstand the emotion: “This is such a hard thing to go through.”R-espect the family: “You are doing a wonderful job of representing your mother.”S-upport the family: “How are you and your family doing?”E-xplore the emotion: “Tell me more about why you feel that way.”
	Enlist interdisciplinary support
Help surrogates understand their contribution to decision making	Explain that decisions are value laden	“Different people feel very differently about what kind of treatments they would accept if they became very sick. We hope you can help us understand what your dad’s views are.”
	Reduce projection biases	“Our goal should be to honor your mother by trying to understand what she would choose if she were sitting here.”
		“Sometimes it is really hard to separate what you might want for your father from what he might choose for himself, but it is really important to try.”
Understand the patient as a person		“Tell me what your dad liked to do before he came in the hospital.”
		“As he was getting sicker, what did he worry about the most?”
		“What was she like?”
Explore specific values and value conflicts	Discuss the range of relevant values (see Table 3)Explore value conflicts (see Table 4)	Explore attitudes about physical/cognitive impairment, social functioning, religious beliefs, prolonged use of life supportExplore advance directivesPoint out values in tension/conflictExplore which values would be most important if all could not be fulfilled simultaneously
Summarize the values relevant to the decision		“We have covered a lot in this conversation. Can I tell you what I’ve heard? It sounds like your brother valued being able to take care of himself. His work as an editor was important to him. He would not want to live in a nursing home under any circumstances, and wouldn’t want to be kept alive by machines in the long term, but would accept life support temporarily if there was a reasonable chance he could get back to living independently and working as an editor. Have I missed anything?”
Bridge between values and treatments	Demonstrate bridges	For “hypothetical patients”: “If your mother felt that living as long as possible regardless of quality of life was the most important thing, then it would be most appropriate to keep her on the breathing machine, place a feeding tube, and begin to explore options for a place where she can remain on a ventilator long term. If she felt that the treatments she is receiving would not have enough of a chance of restoring her to an acceptable quality of life, then we should stop these invasive treatments and begin to focus on maximizing her comfort and the other things that would be important to her during this time.”
		Based on the patient’s values: “Based on what you have told me about your Mom, I recommend a trial of being on the ventilator to see if things get better quickly. If they don’t, then we should focus on keeping her comfortable and remove her from the ventilator.“
Give “permission” to follow the patient’s wishes	Express empathy	“These decisions are hard. You are doing a really good job advocating for you mom.”
		“I can see this is upsetting.”
	Address moral concerns	“Sometimes people are worried about whether it is okay to make these decisions. Are you concerned about this?”
		“One important way to respect your father as a person is to make decisions that fit with his values.”
	Share social norms	“Some families are concerned that stopping life support isn’t allowed. In fact, it’s common in intensive care units to stop treatments when it’s clear that they aren’t going to achieve the patient’s goals.”
		Provide patient-centered recommendations

Attend to Surrogates’ Emotions

Barriers

Research in decision psychology suggests that strong emotions can impair information processing and reasoning (6). Research participants experiencing strong emotions demonstrate different areas of brain activation on functional magnetic resonance imaging and different decision making—corresponding to a “fight or flight” mentality—compared with participants not experiencing strong emotions (25, 26). These changes may influence surrogates’ ability to make decisions that involve difficult tradeoffs between quantity and quality of life.

Additionally, decisions about life support require surrogates to consider that they may need to “let go” of their loved one. If emotions are inadequately addressed, some surrogates may make treatment choices contrary to the patient’s values to avoid the negative emotions caused by the death of a loved one (27, 28).

Practical actions

Clinicians should view attending to surrogates’ strong emotions as an equally important obligation to sharing medical information (29). There is an extensive literature on attending to emotions in clinical encounters (29). Three simple actions may be beneficial and readily incorporated into clinicians’ practice: talking openly about emotions, expressing empathy, and enlisting experts from the interdisciplinary healthcare team to provide ongoing emotional support to surrogates (Table 2) (29–31). One way to operationalize addressing emotions is the NURSE mnemonic (32). As little as 40 s of emotional support by clinicians is associated with decreased anxiety among patients making difficult medical decisions (33). The most overwhelmed surrogates may require temporary delays in decision making to first focus on helping them cope with the circumstances at hand.

Help Surrogates Understand Their Contribution to Decision Making

Barriers

Surrogates may misconstrue their role in decision making in important ways. They may believe that treatment decisions hinge on purely medical judgments rather than on value-laden ones and therefore underestimate the importance of their input regarding the patient’s values (34). On the other hand, some may mistakenly believe that they have sole authority to determine the treatment plan. Additionally, some surrogates make errors due to projection bias, consciously or unconsciously making decisions based on their own values or desires for the patient rather than the patient’s values (34, 35).

Practical actions

Physicians should clarify that decisions near the end of life are value-laden and emphasize that the family’s input is essential (24). To minimize projection bias, it may be helpful to explain that the patient’s values should predominantly guide decisions. This point can be experientially conveyed by first asking what the surrogate might choose for herself in the patient’s condition, then asking what the patient might choose. This approach serves to distinguish the patient’s values from the surrogate’s while allowing the surrogate to openly discuss her hopes for the patient. Clinicians can also explain the value of making decisions that honor a patient’s individuality (15, 36). Such framing may counterbalance the emotional difficulty of forgoing life-prolonging treatments with the moral consolation of striving for authentic decisions for the patient.

Understand the Patient as a Person

Barriers

The common absence of an established relationship between clinicians and patients in ICUs can be a serious barrier to shared decision making (16, 34). Clinicians who do not know the patient as a person are poorly positioned to deliberate with surrogates about decisions that hinge on the patient’s unique values (26). Furthermore, surrogates may not welcome physicians into sensitive decisions unless they believe that they care for the patient as a unique individual (35, 37).

Practical actions

Rather than beginning conversations by focusing on specific treatment decisions, we suggest first inquiring about the patient as a person. The goal is to elicit a narrative about the patient’s life experiences, relationships, and beliefs. Narratives help people make sense of complex situations (15). Just as physicians routinely elicit the history of the present illness to understand the patient’s clinical condition, inquiring about the patient as a person may help clinicians situate the illness in the broader context of the patient’s life. It also may help develop a trusting clinician–surrogate relationship, reveal key values that can be explored subsequently, and allow families to engage in the type of conversations that are an important dimension of anticipatory grieving (38).

Explore Specific Values and Value Conflicts

Barriers

Surrogates face at least three challenges in constructing an authentic vision of the patient’s values. First, they may struggle to identify the variety of relevant values (24). For example, surrogates may focus narrowly on the value of being alive and fail to consider what the patient considers an acceptable quality of life (39). Second, they may struggle to weigh conflicts between values. Although no studies of surrogate decision making have addressed value conflicts, such conflicts plague patients facing difficult medical decisions and can be ameliorated by values clarification exercises (14, 40). Third, surrogates may be unduly motivated by the “Rule of Rescue,” which is “the moral response to the imminence of death [which] demands that we rescue the doomed” (41).

Practical actions

Clinicians should ensure that the variety of potentially relevant values is discussed. One way to begin this conversation is to ask a general question about the patient’s views on quality versus quantity of life, such as “Would your father want to live as long as possible, regardless of his quality of life, or would he prioritize a good quality of life, even if it meant he would not live as long?” (23). We have developed eight questions to elicit considerations important to many patients near the end of life (Table 3) (21, 42, 43). The goal of these questions is to gain insight into how different impairments might affect the patient’s perceived quality of life.

TABLE 3.

EIGHT QUESTIONS EXPLORING VALUES

Value	Question
Longevity	Was your loved one someone for whom it was important to live as long as possible, regardless of his quality of life?
Maintenance of bodily integrity	What would your loved one think about his quality of life if it turned out that he would be permanently dependent on a mechanical ventilator?
Maintenance of physical function	What would your loved one think about her quality of life if she were unable to walk and had serious difficulty in doing daily activities like feeding herself or bathing?
Maintenance of cognitive function	How would your loved one think about his quality of life if he were severely cognitively disabled, in terms of having limited ability to think or communicate?
Autonomy and independence	How would your loved one think about her quality of life if she were unable to make her own decisions?
Social and emotional engagement	How would your loved one think about his quality of life if he became unable to hold conversations or interact meaningfully with you?
Avoidance of burdensome physical symptoms	How would your loved one think about her quality of life if she had to endure ongoing discomfort from pain, shortness of breath, thirst, or other symptoms?
Adherence to religious or spiritual beliefs	Did your loved one have any religious beliefs that would guide her medical treatment?

TABLE 4.

QUESTIONS EXPLORING VALUE CONFLICTS

Is your husband someone who would want to live as long as possible regardless of quality of life, or was quality of life important?

What would your brother say if his illness made it so that he would need other people to help him with basic physical care, but he would be able to think clearly and interact with his family?

What would your wife say if she were no longer able to make decisions for herself and look after herself, but she could be awake and recognize her family?

People with advanced cancer who survive critical illness usually only live a short time longer—days, weeks, or months. What do you think your aunt would say about whether it was worth it to go through invasive treatment to achieve that?

Clinicians should anticipate that sometimes surrogates’ initial responses to these questions may be driven more by their personal desire for the patient to survive rather than the patient’s values (e.g., “Dad would never want to give up.”) (42). Clinicians should recognize that these responses express emotions, address them appropriately, and then gently explore whether there may be more to be understood about the patient’s values: “You clearly love your father very much…tell me more about him.”

Such conversations often reveal conflicting values. For example, patients may value both extending life and maintaining function. Clinicians should articulate these value conflicts and ask surrogates how the patient would have viewed them (17, 40). For example, they might say, “If I understand you correctly, it sounds like your father values both being alive and also being able to live independently and interact with his friends and family. If it was likely that he couldn’t communicate or would be dependent on others for basic care such as dressing and bathing himself, what do you think he would say about the sorts of medical treatments he would want?” (17, 18, 20, 21).

The influence of the Rule of Rescue can be addressed in two ways. First, rather than presenting potential treatment pathways as “do everything” versus “do nothing,” clinicians should emphasize that all pathways involve active treatment: “We are going to do everything we can to give your father the kind of treatment he would want in this situation” (43). Second, clinicians can ask whether the patient might consider certain states “worse than death”—so unacceptable that death would be better than enduring them (Table 2) (21). Discussing states worse than death may allow surrogates to make the psychological leap to see that “doing everything” to extend life may not be consistent with the patient’s authentic values (42, 43).

Summarize the Patient’s Values Relevant to the Decision

Barriers

Mutual understanding of patients’ values is a prerequisite to shared decision making. If deliberations are lengthy or complex, clinicians and surrogates may understand them differently. Moreover, some surrogates may be so focused on details that they need assistance to gain a full perspective on the patient’s values.

Practical actions

Physicians should restate the central values they have heard during the conversation to ensure shared understanding. Summarizing allows surrogates to assess whether the picture of the patient’s values is complete and accurate and to modify it accordingly.

Bridge from the Patient’s Values to Specific Treatment Pathways

Barriers

Some surrogates who have a clear understanding of a patient’s values may still struggle to understand which treatment pathway is most consistent with those values. Some may need assistance to bridge the gap between the “lay world” of patient values and the “medical world” of treatments (9, 19, 27).

Practical actions

It may be helpful for clinicians to make an explicit “bridge” between treatment pathways and the values they embody (11). Table 2 provides examples of both patient-centered recommendations and recommendations for “hypothetical” patients with different values. We recommend that when clinicians make treatment recommendations, they should not simply state the recommendation but also “show their work” by explaining how they moved from the patient’s particular values to a judgment about the most appropriate treatment pathway. For example, rather than stating, “I recommend that we focus on a comfort-oriented treatment plan,” physicians should say, “Based on how important it is to your father to avoid being kept alive on machines if he faced serious cognitive and physical impairments, I recommend that we focus on a comfort-oriented treatment plan.”

Some families may desire substantial guidance from physicians regarding decision making. For these families, personalized treatment recommendations may be especially important (6, 7, 27, 44). A small minority of surrogates may wish to cede decisional authority to clinicians (44). The ethical and practical aspects of these situations are beyond the scope of this article but have been addressed by others (45).

Give “Permission” to Follow the Patient’s Values

Barriers

Even when forgoing life-prolonging treatments is clearly most consistent with a patient’s values, surrogates sometimes struggle to authorize it because of the emotional difficulty of facing the death of a loved one, moral or legal concerns about causing death, or concerns that forgoing life support violates prevailing social norms (46). Individuals with limited exposure to modern medical technologies may be unaware that forgoing life support is commonplace in the care of patients with advanced illness (17, 47).

Practical actions

As noted previously, attending to the emotional difficulty of letting go of a loved one may help overcome surrogates’ emotional barriers to enacting patient-centered decisions. Empirical evidence indicates that clinicians often do not express empathy during deliberations about whether to forgo life support but that families are more satisfied when they do (30).

When legal or moral concerns arise, clinicians should clarify that withholding and withdrawing life support is legal in the United States and is allowed in virtually every religious tradition. Hospital chaplains or clergy from the patient’s tradition may help alleviate religious concerns. When surrogates perceive forgoing life support as patient abandonment or betrayal of a vulnerable loved one (7, 47), physicians can explain that deciding based on the patient’s values is an important way to respect the patient as a person and protect her from treatments contrary to her values (15).

If surrogates misperceive social norms regarding end-of-life decision making, physicians should provide information about them. For example, they can explain that many patients forgo life-prolonging treatment near the end of life (47). Making a treatment recommendation may reassure surrogates that a plan of care is socially acceptable.

It is beyond the scope of this article to address situations in which surrogates are ultimately unwilling or unable to authorize the treatment plan most consistent with the patient’s values. Proposed strategies for such situations include ongoing emotional support and negotiation (48), physician-driven decision making (44, 45), legal removal of the surrogate (49), and procedural dispute resolution (50).

Limitations of the Facilitated Values History

The Facilitated Values History is intended for situations in which the surrogate has knowledge of the patient as a person. Surrogates who lack sufficient knowledge must rely on other standards to guide decision making, such as the best interest standard (51).

There is a risk that some surrogates could experience psychological distress if they mistakenly believe that their responsibility is to discover the unknowable “right answer” to the question of what the patient would choose when the patient had not made a choice in advance. Therefore, clinicians should be careful to avoid language that implies this is the goal and instead emphasize that the goal is to select a treatment pathway that is consistent with the patient’s health-related values and respectful of the patient as a person.

The reality of modern intensive care is that there is often more than one clinician managing the goals of care conversation with the family. Empirical research is needed to understand how best to integrate the Facilitated Values History into the complex care teams that serve critically ill patients.

Strengths of the Facilitated Values History

This framework fills a void about how clinicians can assist surrogates in making authentic decisions for patients who have not articulated specific treatment preferences. It conceptualizes decision making not merely as a cognitive process but also as an emotional and moral one. Because most cultural groups value treating patients as ends in themselves, rather than merely as means to an end, this framework should be broadly acceptable in pluralistic societies. It fits within social and legal frameworks for surrogate decision making. It may benefit clinicians by countering the depersonalization of care that has been associated with clinician burnout (52). Many elements of the framework could be implemented by nurse or social work members of the healthcare team, thus promoting interdisciplinary collaboration for patients with advanced illness.

Potential Criticisms of the Facilitated Values History

Some may worry that physicians could misuse this approach to paternalistically influence decisions that do not advance the patient’s interests. Because the approach is explicitly grounded in gaining a clear vision of the patient’s values, and surrogates retain decisional authority, this possibility is diminished. The Facilitated Values History requires trust that physicians will strive to promote the patients’ interests; this is not different from what is required of clinicians currently.

Others may be concerned that because this approach is not “value-neutral,” it extends beyond the realm of physicians’ expertise. It is untenable to argue that physicians can maintain neutrality in the decision-making process. Moreover, in this approach, the patient’s interests and values are ultimately defined by the family, not the physician. The physician’s role is to elicit patient values in a comprehensive way and to reduce the impact of cognitive, emotional, and moral factors that may threaten patient-centered decisions.

Some may argue that this approach limits physicians’ ability to make strong treatment recommendations based on their views of what is in the patient’s best interest. However, the Facilitated Values History makes no restrictions on the strength of physician’s treatment recommendations. Instead, it encourages genuine involvement of the physician through attempts to understand the values of the incapacitated patient and then make treatment recommendations that respect the patient’s values.

Although expert clinicians may already use some individual behaviors of the Facilitated Values History, this systematic approach has not been formally articulated and goes beyond the commonly taught role for clinicians in surrogate decision making. Additionally, although written documents have been proposed to help competent patients consider their values (22, 23), the Facilitated Values History is unique in focusing on surrogates rather than patients, attending to the emotional and moral considerations of decision making, and being implemented through conversation rather than a pen and paper exercise. As with other complex procedures, clinicians will likely increase their skills in this domain through training and practice.

Finally, some argue that the problems addressed by this approach can be eliminated by increased completion of advance directives. Although advance directives are clearly important, modern advance care planning efforts are evolving from a document-driven, decision-focused event to a process that prepares surrogates to make in-the-moment judgments (53, 54). Therefore, it is likely that the need for interventions like the Facilitated Values History will increase rather than decrease over time.

Conclusions

The Facilitated Values History is a structured approach for clinicians to assist surrogate decision makers in understanding incapacitated patients’ values and applying them to treatment decisions. Its seven behaviors address common emotional, psychological, cognitive, and moral barriers to high-quality surrogate decision making. It provides practical guidance to achieve the dual ethical goals of providing patient-centered care for incapacitated patients and supporting families facing the daunting task of deciding for others.