Sometimes I get, I don’t want to say scared, but it kinda makes me feel like
‘Oh my God, here I am and I have to make an important decision like this about grandma... Am I making the right decision?..
’ because I don’t want to say ‘yes’ and then it doesn’t turn out the way I want it. (Iverson et al., 2014, p. 5)
At some point in their lives, older adults may be unable to make their own health care decisions. It has been estimated that surrogates make approximately 75% of decisions for hospitalized patients with life-threatening illness and 44% to 69% of decisions for residents in nursing homes (Vig, Starks, Taylor, Hopley, & Fryer-Edwards, 2007). However, little research has been conducted on specific roles and processes of surrogate decision making. Most of the research has focused on end-of-life decisions; however, surrogates are often called on to make other decisions regarding a patient’s health (Mahon, 2010). As the number of older adults in our society increases, along with the prevalence of chronic diseases, surrogate decision makers are increasingly likely to be called on to make complex, and often agonizing, health care decisions.
Recent studies of surrogate decision making, as illustrated by the quotation above, have helped increase our awareness of how overwhelming and stressful the decision-making process can be for surrogates, who may worry that they are not making the “right” decision (Bern-Klug, 2014; Iverson et al., 2012). Many surrogate decision makers have had little preparation for making informed choices for a loved one, which adds to the stress of the decision-making process. Azoulay et al. (2005) interviewed 284 family members who were primary decision makers for a loved one. They found that approximately 33% of family members who made health care decisions for loved ones in intensive care units (ICUs) had symptoms of posttraumatic stress disorder (PTSD). Of those who made end-of-life decisions, approximately 82% had PTSD symptoms.
Wendler and Rid (2011) performed a systematic review of studies focused on surrogates’ perceptions after making treatment decisions for an incapacitated adult. Their review included 40 studies (29 that used qualitative methods and 11 that used quantitative methods), which provided data on 2,854 surrogate decision makers. Most participants in the study were surveyed several months to years after making treatment decisions. Findings from the review of both quantitative and qualitative studies indicated that many participants experienced negative emotional burdens long after the decisions had been made; review of quantitative data showed that one third of participants experienced negative emotional effects, such as stress, guilt, and doubt as to whether they had made the right decisions.
It is important for health care professionals to be aware of challenges that surrogate decision makers face so that they can identify strategies to address those challenges, facilitate decision making, and decrease surrogates’ stress.
Accurately Representing the Wishes of Loved Ones
The role of the surrogate is to represent the patient’s preferences for health care decisions when the patient is unable to do so (Mahon, 2010). It is typically assumed that surrogate decision makers, who are often family members, accurately represent the wishes of their loved ones. However, findings from studies of advance care planning and surrogate decision making have revealed that this is often not true (Black et al., 2009; Mahon, 2010).
A comprehensive literature review of studies focused on the accuracy of surrogate decision making was performed by Shalowitz, Garrett-Mayer, and Wendler (2006). Data were gathered from patient/surrogate pairs who watched scenarios of hypothetical patients who could not make their own health care decisions and were offered an intervention. Patients and surrogates were asked to respond whether they would accept or refuse the proposed intervention. In one third of the hypothetical cases, surrogates incorrectly predicted how the patient would respond. Surrogates’ predictions were least accurate in scenarios involving dementia and stroke.
Symptoms Experienced by Surrogate Decision Makers
Surrogate decision makers have described the strain of feeling forced to quickly process information that is highly technical and difficult to understand; as a result, they often do not feel as though they have the information they need to make an informed decision (Iverson et al., 2014). Studies have shown that the stress of decision making may impede thoughtful and timely judgments and takes a significant psychological toll on the surrogate, even when the loved one survives, thus resulting in anxiety, depression, and PTSD (Iverson et al., 2014).
In a literature review of 18 studies that focused on symptoms experienced by family members making decisions for loved ones in the ICU, McAdam and Puntillo (2009) found that surrogate decision makers experienced high levels of stress and anxiety, as well as moderate levels of depression. One source of stress was the realization that role expectations associated with serving as a surrogate may be at odds with the surrogate’s personal role expectations of being a loving family member. If the family member’s main goal of care is prolonging survival rather than ensuring comfort, they may request interventions such as a pacemaker, feeding tube, or renal dialysis, even if they have a low chance of success, as these decisions add to the family member’s sense of what a good person does on behalf of a loved one (Bern-Klug, 2014). Conflicting role expectations illustrate the emotional quandary that surrogate decision makers may experience. The result of this quandry may be feelings of regret and guilt for violating self-expectations.
Studies have identified specific factors that appear to increase stress for surrogate decision makers. McAdam and Puntillo (2009) found that incomplete or inconsistent information, as well as a lack of family education, were associated with higher levels of psychological symptoms in family decision makers. Researchers have also identified individual, provider-related, and environmental factors that appear to increase stress in decision makers for critically ill patients (Iverson et al., 2014). These factors include a poor understanding of the patient’s condition and treatment, perceptions of poor communication with insufficiently supportive staff, and a perceived lack of responsiveness to family needs and stresses, especially when providers are not clear or transparent in discussing prognoses. In addition, structural factors and policies, such as limited visiting hours and space, limitations on the number and age of visitors, and inadequate waiting areas, may contribute to increased stress (Iverson et al., 2014).
Decision Making in Various Settings
It is important to consider how a specific setting or environment may influence surrogate decision making. The ICU may be an especially difficult place for surrogate decision makers, as the environment may seem overwhelming and multiple providers and unfamiliar and confusing terminology may be encountered. The types of decisions that need to be made are not necessarily end-of-life decisions, but rather judgments that must be made in a short time span about specific treatments. It is not likely that surrogates would know how their loved ones would approach such decisions.
Iverson et al. (2014) conducted interviews with surrogate decision makers of 34 critically ill patients to explore stress factors and coping strategies associated with surrogates’ decision making role in the ICU. Findings indicated that the perceived lack of coordination and communication among the various team members added to the stress of making decisions and contributed to surrogates’ lack of confidence and comfort in making decisions.
Family members of loved ones in nursing homes may be called on to make decisions in the days and weeks leading up to a resident’s death. Family involvement in medical decision making is especially likely for residents with dementia (Bern-Klug, 2014). Decision making for patients with dementia presents special challenges, but few studies have examined the perspectives of these surrogate decision makers (Black et al., 2009).
Because the dementia process has likely evolved gradually over a period of time, surrogate decision makers may have had an opportunity to get to know the patient’s wishes about end-of-life decisions. However, this is not always the case, as patients may not have discussed this before the dementia became advanced, or the patients’ wishes may have changed as the dementia progressed. Black et al. (2009) interviewed 34 surrogate decision makers for patients with advanced dementia in three nursing homes. Their focus was on how surrogate decision makers developed their understanding of patients’ treatment preferences, what those preferences were, and whether the surrogates were confident that they were representing patients’ wishes for end-of-life care. Findings from the study showed that 24% of surrogates did not have information from an advance care directive, or even prior discussion of the patient’s end-of-life wishes, to use when making their decisions. The lack of information appeared to be related to a combination of the patient’s or surrogate’s reluctance to discuss a topic perceived as unpleasant, the lack of opportunity for such a discussion, or a belief that the discussion was unnecessary.
One important finding from the Black et al. (2009) study was that extrinsic factors, such as a relative’s death, often served as a catalyst for a patient to discuss end-of-life care plans. However, these catalysts sometimes did not occur until the patient’s dementia had progressed and compromised his or her ability to express or document preferences. Thus, it is important for potential surrogates (and health care professionals) to raise these issues with older adults early on, when they have the cognitive ability to engage meaningfully in advance care planning.
Implications for Nurses and Other Health Care Professionals
Most clinicians have had little training in working effectively with surrogate decision makers. As a result, nurses and other health professionals may focus primarily on the patient’s needs, unaware of the surrogate’s perspective and need for support. Clinicians also may find it difficult to know how to respond when the surrogate’s interpretation of the patient’s wishes differs from what they understood from discussions with the patient, or when multiple surrogates disagree about the best care option. It is important to understand the surrogate’s perspective about what makes decision making more or less difficult.
Enhancing Accuracy of Surrogates’ Decision Making
Recognition that surrogates’ decisions may not always reflect the patients’ wishes has clarified the need to identify potential strategies for enhancing the accuracy of these decisions (Kirk, 2010). Although older adults are encouraged to document their preferences for specific life-prolonging procedures in an advance directive, many do not do this or even discuss their preferences for end-of-life care with a surrogate decision maker (Black et al., 2009). In addition, increasing evidence exists that the advance directive alone may be insufficient to prepare patients and surrogates for difficult health care decisions (Kirk, 2010; McMahan, Knight, Fried, & Sudore, 2013). More structured approaches are needed to help surrogate decision makers understand their role and the preferences of the patient.
Nurses can help surrogates by asking strategic questions that encourage the surrogate to think about what his or her loved one would want. For example, instead of asking, “What do you want us to do for your mom?” the nurse might ask, “What do you believe your mom would choose if she could speak for herself?” or “If your mom were sitting here now, what do you think she would say if she were asked whether she wanted surgery to insert a feeding tube?” (Kirk, 2010; Mahon, 2010).
It is important for surrogate decision makers to be aware of the “life story” of the patient so that they understand the goals and values of the individual. One approach that has been found to be effective in helping surrogates represent the wishes of their loved ones is the use of narratives. Surrogates are asked to consider the life story of the patient, share their reflections with the patient’s professional caregivers, and work with the health care team to make decisions that appear to be consistent with the patient’s previous choices and experiences (Kirk, 2010).
Decreasing Stress for Surrogate Decision Makers
Studies of surrogate decision making consistently demonstrate that stress can be minimized by improving communication between surrogates and clinicians (Iverson et al., 2014; Kirk, 2010; McAdam & Puntillo, 2009). As central contacts in ICUs, hospital units, and nursing homes, nurses can play an important role in ensuring that clear and consistent communication occurs among patients, surrogates, nurses, and other health care professionals. They can also be helpful in encouraging surrogates to seek consultation with ethics committees when they are unsure about what to do.
Promising interventions are emerging to decrease stress for surrogate decision makers. McAdam and Puntillo (2009) noted that structured care conferences have been shown to significantly reduce symptoms of PTSD, anxiety, and depression in family decision makers. White et al. (2012) piloted a nurse-led intervention that included a nurse family support specialist to assess family needs each day and coordinate and interpret vital information for family members throughout the patient’s ICU stay. Findings from the study indicated that approximately 90% of both physicians and surrogates reported that the intervention (a) improved the quality and timeliness of communication, (b) facilitated discussion of the patient’s values and treatment preferences, and (c) improved patient-centeredness of care. The authors emphasized that for this type of liaison to be effective, all members of the health care team need to provide support by ensuring that time is carved out from other responsibilities for the family support specialist role and that necessary resources are available. In this way, surrogates can engage with professional caregivers as thoughtful partners in the care of their loved ones.
Kirk (2010) described two interventions to improve communication: (a) regular family meetings and (b) written information related to decision making. Regular meetings between families and health care staff provide opportunities for surrogates to obtain important information and have their questions answered. The planned consultations also help decrease instances of conflict between family members and caregivers. These meetings are especially important when the patient’s condition changes, or when a reevaluation of goals for the patient is needed. Written information in the hospital visitors’ area or other readily accessible locations may also help enhance communication by providing basic facts that can then be built on through discussions with members of the health care team.
Nurse as Educator, Advocate, and Compassionate Listener
Nurses play an important role in helping surrogates make meaningful decisions with less stress. A primary role for nurses in advance care planning is that of educator. Nurses can provide helpful information about advance care planning, as well as what to expect when choosing a treatment option. Because they work closely at the patient’s bedside, nurses can effectively initiate discussions with patients and surrogate decision makers. Advance care directives are a routine part of admission procedures, but nurses can play an important role by ensuring that continued discussions occur throughout the patient’s stay, when both the patient and family may be more comfortable in discussing the topic.
Nurses may also serve as patient advocates, promoting the patient’s wishes with family members and health care providers and providing the patient with the information necessary to choose a surrogate. In addition, because end-of-life decisions are influenced by multiple beliefs, the nurse can serve as an important advocate to help elicit patient values and ensure that surrogate decision makers understand those values. Nurses can also clarify medical information or questions that the patient or surrogate may have concerning advance care directives and help ensure that surrogates understand their role.
Sometimes surrogates may simply need a compassionate listener to help them think through a decision they are about to make or reassure them about a decision they have already made. As described above, many surrogates experience extreme anxiety and stress, and the environment of a hospital or nursing home may seem too busy or unwelcoming to find someone to discuss the emotions experienced during the decision-making process. Nurses who serve as compassionate listeners can help reduce the deleterious after-effects of a heart-wrenching decision.
Iverson et al.’s (2014) study of factors affecting stress experienced by surrogate decision makers suggested the “important and pivotal role nurses can play as a reliable, compassionate, trusted and understandable source of information and support” (p. 10). Although choosing a surrogate and clarifying one’s values for health care decisions are well-accepted behaviors for advance care planning, these are complex and difficult tasks that may involve making multiple decisions over time. Patients and surrogates often do not know how to accomplish these tasks. It is important that nurses and other health care professionals become knowledgeable about how to support surrogates who struggle with how best to make decisions for others. More research is also needed to better understand the unique challenges and experiences of surrogate decision makers.
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