Address Work Avoidance

Several times during the three family meetings, one or more of the family members avoided AW by changing the topic and refocusing the discussion from AW to technical aspects of treatment. When this occurred, the HCPs responded by use of the behaviors identified above to support decision making, support hope, and strengthen the therapeutic relationship. Using empathy and compassion, they explained to the family what to expect and reassured the family that the patient would not be abandoned and that pain and symptoms would be managed. As the daughter pointed out in the interview, these techniques helped “with the scariness of it” so that the family was able to focus on the adaptive challenge. After using the supportive techniques, the HCPs then refocused the conversation on the AW that needed to be done and on the goals of the patient.

An example of this occurred during the second family meeting when Son 1 diverted the conversation from goals of care to technical aspects of the ventilator

treatment. The PC answered the question, gave a brief explanation of the disease process and quickly shifted the conversation back to goals, saying:

The reason we’re even having any of this discussion is we don’t want him to suffer, and I can look at your faces and know that there’s a ton of compassion and love for this gentleman…our job is to find out what his wishes are and try to abide by that. So we have a job to keep you all informed and educated, [and] we have a job to make sure he’s not suffering because of what we’re doing to him.

In this response, he used empathy, compassion, and positive regard as ways to

strengthen the therapeutic relationship and promote adaptation. Then he refocused the discussion to the AW that needed to be done.

3.5 Discussion

When HCPs recognize an impending death and support the family’s ability to do AW through AL behaviors, the family should be able to more readily face the adaptive challenge and do the AW required to navigate the transition from curative to palliative care. However, when HCPs instead focus conversations on technical solutions, the family members may not recognize that they are facing adaptive challenges and may have more difficulty doing the adaptive work necessary to make decisions on behalf of their loved one. The consequences for the patient may be prolongation of the dying process and increased suffering, for the family increased anxiety and stress, and for society increased cost of dying (Meier & Brawley, 2011; Nelson, Cox, Hope, & Carson, 2010).

Use of Adaptive Leadership is consistent with current standards for EOL care in the ICU, which are based on the premise that family/patient-centered care and shared decision-making are ideals (Davidson et al., 2007; Truog et al., 2008). In this study, we examined a case of withdrawal of life support in the ICU through the lens of AL and identified adaptive challenges and AL behaviors that facilitated family/patient centered

care and shared decision-making. By providing information in clear language, the HCPs ensured that the family members and the health care team had a shared understanding of the patient’s prognosis and expected outcomes. By providing decision support, supporting realistic hope, and addressing work avoidance, the HCPs facilitated care that was centered on the goals of the patient and family.

We identified several difficult adaptive challenges faced by family members as the patient’s condition deteriorated. These challenges included understanding that their loved one was not responding to technical interventions, changing their beliefs about their loved one’s ability to thrive, identifying their goals and values for the patient, making trade-offs, reframing their hope from hope of survival to hope of peaceful death, and coping with loss and grief. Use of AL behaviors supported the family’s AW as they navigated the transition from curative to palliative care.

Characteristics of the AL approaches used by the HCPs included use of clear, honest, and direct language to provide information about the challenge of patient’s condition and explain that the technical solutions were failing to improve his chances of survival. This study provides evidence that this enabled the family to engage in AW beginning with understanding that they were facing an adaptive challenge.

In addition to providing information about the challenges, the HCPs used AL behaviors to facilitate AW by providing decision support. These behaviors included

explaining the prognosis and expected outcomes, describing the options available and the trade-offs inherent in those options, and helping the family identify and clarify their goals and preferences as well as expressed goals of the patient. These behaviors

facilitated AW by providing a holistic understanding of the nature and consequences of the decisions. In response to these behaviors, the family accomplished adaptive work by gathering information, reevaluating what they hoped for, applying their understanding of the values of the patient to make a decision, identifying the patient’s goals and making decisions based on those goals, coming to terms with the impending death, accepting that the patient was dying, and preparing to say good bye.

The HCPs in this study facilitated AW by supporting realistic hope. Although many people view hope in terms of an expected outcome, such as survival, hope may also be defined as trust or reliance on others, such as family, community, or a higher power (Tulsky, 2002). The HCPs in this study supported hope for an outcome by gently and gradually helping the family to reframe their hope from hope for cure to hope for peaceful death. They also nurtured a hope for trust and reliance on others by

demonstrating compassion, empathy, and an abiding presence; assuring non- abandonment; foreshadowing; allowing time to process information; and assuring adequate pain and symptom management. By fostering realistic hope, the HCPs created the opportunity for the family to do AW without becoming overwhelmed with

hopelessness and despair.

Adaptive work is often avoided because it requires effort and might create fear and loss (Heifetz et al., 2009; Thygeson, 2013). Because of the adaptive challenges involving fear and loss faced by family of members of patients dying in the ICU, family members in this situation tend to avoid doing AW (D. E. Bailey, Jr., et al., 2012). This study illustrated some of the avoidance behaviors described in the AL framework, including changing the topic from AW to technical work. The HCPs responded to the family’s avoidance in ways that supported the family while refocusing the discussion to the AW that needed to be done.

Because the AL framework is new to the field of healthcare, adaptive leadership behaviors have not yet been fully operationalized (D. E. Bailey, Jr., et al., 2012). The findings from this study offer preliminary definitions for the concepts in the AL

framework in health care. By examining the interactions between HCPs and the family members through the lens of AL, using a taxonomy of AL behaviors developed by experts in the emerging field of AL in healthcare (MT), we were able to identify and describe adaptive challenges, technical challenges, adaptive and technical work, and specific AL behaviors used by the HCPs to facilitate this family’s transition from curative to palliative care. Future studies building on this knowledge will help to develop the framework by further delineating these challenges and behaviors with the

ultimate goal of improving practice by providing useful guidelines to communicate with patients and family members who are facing adaptive challenges.

3.6 Conclusion

When family members of a dying patient in the ICU have not recognized the need to do AW, they may continue to focus on technical solutions and insist on aggressive treatments. However, when HCPs recognize an impending death and support the family’s ability to do AW through AL behaviors, the family is able to more readily face the adaptive challenge and do the AW required to navigate the transition from curative to palliative care. Use of AL techniques by HCPs throughout the trajectory of an ICU stay will help family members develop a realistic understanding of the

prognosis, expected outcomes, the options, and the inherent trade-offs and to make decisions that are consistent with the goals of the patient and family.

This study is one of the first to use the AL framework to examine HCP behaviors and the first to use AL to examine the behaviors used by HCPs interacting with family members of a patient at EOL in the ICU. The findings are significant to the fields of critical care medicine, nursing, and palliative care because they provide a framework for understanding how to support family members and facilitate the difficult transition from curative to palliative care.

4. Family Perspectives of Nursing Strategies with Family