Experts in critical care recommend early and ongoing discussions between clinicians and patients/families in the intensive care unit (ICU)1 to explain patient's status, provide prognostic assessments, and explore what the patient and/or surrogate identify as important values and life philosophies that drive medical decision making.2 In shared decision making, a partnership is established among providers, patients, and their loved ones with the goal of exchanging information and reaching consensus. One in 5 Americans die after receiving care in the ICU3; decision making is particularly complex due to the quantity and complexity of data being presented, the rapid change in the course of the patient's condition,4 and differing expectations regarding prognosis between physicians and surrogate decision makers.5 This article aims to review some of the challenges that arise with medical decision making for patients and families facing serious illness in the ICU by presenting a simulated case study and highlighting the practice of the clinical nurse specialist (CNS) in the critical care setting.
SIMULATED CASE STUDY: Mrs Z. was found down at the office where she worked. She was 58 years old, with 3 young adult children, a partner of 30 years, and large extended family. Mrs Z. suffered a devastating stroke; she was unable to speak for herself when she arrived in the emergency department, and she was subsequently admitted to the ICU on a ventilator. She did not have an advance directive; various family members sat at her bedside around the clock. The intensivist provided daily medical updates to the person who was present at the bedside with the expectation that information would be shared among the family. After more than 2 weeks, Mrs Z. was still unable to express herself or meaningfully interact with her environment; she was dependent on the ventilator, and discussion was initiated about placement of tracheostomy and percutaneous endoscopic gastrostomy feeding tube. Unfortunately, family members were not in agreement about the best way to proceed with Mrs Z.'s care, and numerous attempts to establish consensus during family meetings were unsuccessful.
Because Mrs Z. was not able to identify someone to speak on her behalf and in the absence of a written advance healthcare directive, her physician and healthcare team had to determine who would be her most appropriate surrogate decision maker. In the state of California, because there is not an automatic hierarchy, the person may or may not be Mrs Z.'s next of kin. The most appropriate decision maker is the person who knows Mrs Z. the best.6 That person would ideally have a close, caring relationship with Mrs Z., someone who is aware of her beliefs and values, and someone who is willing and able to make necessary decisions.7 As it turns out, Mrs Z.'s partner/husband was determined to be the best person to speak on Mrs Z.'s behalf. One of the many challenging aspects of this case was that Mr and Mrs Z. did not share the same values as the patient's parents and extended family.
The medical decision maker in this case would weigh the benefits and burdens of placing a percutaneous endoscopic gastrostomy feeding tube and tracheostomy with the hope that Mrs Z. would be able to participate in rehabilitation and ultimately return to her prestroke cognitive and functional status. After several meetings with 3 different neurointensivists, Mr Z. concluded that his wife would never be able to live independently. Mrs Z. would likely live in a facility where she would require around-the-clock care. Meaningful communication and purposeful interaction with her environment were not expected. Mrs Z. would not be able to safely swallow, and she would be dependent on a feeding tube for the rest of her life. Although Mr and Mrs Z. did not have personal experience with breathing tubes and artificial nutrition, Mr Z. recalled the numerous conversations that he and his wife had years ago when a legal case of a woman in Florida was a top news story. Mrs Z. had repeatedly told her husband that she would “never want to live like that [woman, Terry Schiavo].”
PATIENT AND FAMILY CHALLENGES
Various factors contribute to the challenges regarding ethical medical decision making in the ICU. Many critically ill patients are unable to speak for themselves, and decisions are often made by family members who may not know the values, life philosophy, or preferences of the patient. Surrogates are frequently inaccurate or overly optimistic about the patient's chance of survival,8 and in some family culture, religion/spirituality plays a significant role, and individuals trust that a higher power will determine the outcome of the ICU stay. Biases/beliefs such as “he will beat the odds” or “she is a warrior/fighter” are not uncommon.
Although medical decision makers and family welcome prognostication as it provides an opportunity to prepare emotionally and practically for the possible death of a loved one,8 discordance often exists between medical staff prognosis and family/decision maker estimates. Family members often have optimistic expectations of a loved one who is critically ill. The optimistic prognosis may be grounded in an alternative value system such as religious or spiritual practice.5 A surrogate decision maker may also have his/her own self-biases influencing the interpretation of a prognosis.
Family culture, religious beliefs, and faith influence medical decision makers as the majority believe that God influences the outcome of their loved one's illness through either direct intervention or predetermination; this precludes the physician's prognosis.8 God is omnipotent; one's death or dying process is in God's control, and the value of life and the support of a faith community are important considerations for decision makers.9 Families value the medical information provided by physicians and nurses, and they identify that interventions by pastoral care and social workers offered effective support while their loved one was in the ICU.10 It is often the bedside nurse in the ICU who identifies spiritual or psychosocial needs and consults with other disciplines, who then dialogue with family in exploring the significance and meaning of cultural, religious, and faith-based decisions.
Decision makers may also have self-biases that influence decision making in the critical care setting that may include the need to maintain hope and optimism in efforts to positively impact the patient's outcome.5 Loved ones believe that the patient has unique strengths, such as “a strong will to live, a fighting spirit, or tremendous faith,” which is unknown to the physicians/medical staff,8 and these nonclinical factors are taken into account when making decisions.11 Although the positive support can be beneficial and supportive to the patient's overall healing, it may lead to an unrealistic expectation. These life philosophies and values can be interpreted by providers as a bias toward optimism, which leads to an incongruent view of the situation. Interestingly enough, when decision makers were given a prognosis, they approached the situation from the “lens of success for survival” when the only other option was death.8 In other words, it seems that decision makers focus on the outcome of survival alone and may not have a clear understanding of the meaning of quality of life as defined by their critically ill loved one.
A CNS in the ICU with palliative care training has a unique combination of skills, which include expertise in clinical practice with education in advanced pathophysiology, an influential role as patient and nurse advocate, and the ability to view systems with the intent of enhancing the patient and family care experience. As an educator with specialized communication skills, the CNS is equipped to manage complex conditions,12 conduct family conferences, navigate sensitive goals-of-care discussions, coordinate care with all providers, and improve quality13 by ensuring that the patient's life philosophies and values are honored.
In the simulated case study, the conflict experienced by Mrs Z.'s family members and the moral distress experienced by those caring for her present a challenge. The discordance can potentially be mitigated by the careful intervention of a palliative care CNS from the outset of admission and throughout the course of a patient's stay in the ICU. Exercising expertise within the Nurse Sphere of Influence, a CNS provides education and support to bedside ICU nurses. The evidence-based techniques and strategies for IMPACT-ICU (Integrating Multidisciplinary Palliative Care into the ICU) are intended to train and support bedside nurses in a more effective communication to improve collaboration and enhance patient care.14 The CNS models expert communication techniques and champions the use of evidence-based practice to achieve the best possible outcomes.15
Bedside nurses are pivotal in optimizing communication across disciplines in the ICU; however, many report insufficient training in communicating prognosis and goals of care and inadequate skills to support critically ill patients and their families.16 Fewer than 40% of ICU nurses reported being competent in the palliative care domain; moreover, many of these nurses reported higher levels of moral distress seemingly related to the lack of palliative involvement.17 Virtually all ICU patients and their families have palliative needs10; family members report that, in addition to providing prognostic information, it would be helpful for clinicians to explain the disease process in lay language and how this estimated time frame was determined.18 Although the evidence is scant, we suggest that having a designated palliative care CNS in the ICU would enhance ethical decision making by providing medical information to patients and families in language they could understand, empowering critical care nurses with communication tools and educating them to facilitate goals-of-care discussions. Most important, this intervention would lead to improved patient outcomes by skillfully navigating the challenging situation such as faced by Mrs Z. and her family.
While education of critical care nurses provides a strong foundation, discordance can still exist between providers and decision makers. The palliative care CNS assesses the family structure, identifies that a decision maker may be feeling overwhelmed, and provides support in medically complex decision making. In Mrs Z.'s case, early primary palliative care intervention by the bedside nurse would facilitate ethical discussions with the proper medical decision maker. As Mrs Z.'s case becomes more complicated, the role of specialty palliative care and the CNS is highlighted.
The CNS has the unique perspective of the bedside nurse and the advanced practice provider with the skills to describe to patients and families likely functional and cognitive trajectories once the patient has been discharged from the ICU and eventually leaves the hospital. This may include reframing what it means to “get better.” Early integration of the palliative care CNS on the critical care team builds rapport with patients and families, which facilitates understanding and enhances dialogue during challenging conversations. Ultimately, the interventions by the CNS enhance ethical decision making in the critical care setting to achieve the best possible outcomes for patients and their families.
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