The Influence of Nursing on End
of Life Care in the Adult ICU:
Stacey B. McNutt
The high level of care required by patients in the intensive care unit is often felt to be in conflict with the goals of the patients who will die there. Advance directives are frequently not in place to direct the care of the dying patient. The highly technical curative culture of the ICU may negatively impact the ability of patients and their families to make critical care decisions. ICU nurses may feel inadequately prepared to care for dying patients. Suggestions for improving the care delivered by nurses to dying patients in the ICU are offered based on available research.
I have been an adult ICU nurse for 8 years. During my career, I have discovered that nurses working in ICU are very good at advocating for those patients who we feel will heal. We educate them about their illness and prepare them and their families for their return home. We discuss their care openly with both physicians and involved family members. However, we are often left floundering and at a loss when our goal switches from one of healing to one involving enabling a good death.
Early in my career, a respiratory therapist and I were discussing how we feel when a patient dies. She seemed to think that I had become a nurse to save lives. I agreed with her at first, but after reconsidering our conversation, I realized that I had become a nurse not to save lives, but to change lives. I felt there was a void in our ability as nurses to provide the best care possible to dying ICU patients and decided to investigate the literature. Our current health care climate requires nurses to be enormously efficient in rendering care to both healing and dying patients. The goal of this article is to provide education and increase awareness for nurses facing the uncertain circumstances of providing care to a dying ICU patient.The level of care required by patients in the Intensive Care Unit (ICU) is complex and their condition is often unstable. Nurses who work in the ICU understand on a first hand basis the intensity of the care required by their patients. One factor that remains stable is that the potential for catastrophic patient outcomes always exists. Despite receiving the highest level of care and the benefits of advanced technology, many ICU patients will die. This fact requires ICU nurses to engage in a paradigmatic shift from one of recovery to one of end of life care. A review of the literature of end of life care received by patients in ICUís yields discrepancies about how ICU nurses provide end of life care to their patients.
A recent study of ICUís in six states revealed that one out of five patients die after receiving care in an ICU (Angus, Barnato, Linde-Zwirble, Weissfeld, Watson, Rickert & Rubenfeld, 2004). As many as 50% of those dying patients received care that was beyond their wishes during their last days of life (Rocker, Shemie, & LaCroix, 2000). Statistics also demonstrate that patient deaths occur in increasing proportion to age, with 73% of all ICU deaths in patients over 65 years of age. Given the changing demographics in the United States and the projected doubling of the population of persons over 65 years of age by the year 2030, ICU nurses will face an increased challenge to the traditional curative model of ICU care (Miller, Forbes, & Boyle, 2001).
The advance directive has become the standard tool used for the direction of a patientís end of life care wishes. Ideally, each patient who enters into the healthcare system would have a specific advance directive that outlines the parameters of care desired when they are faced with their personal end of life care issues. The reality is that only a small percent of patients admitted to the ICU have an advance directive that communicates their wishes for the type and extent of treatment wished for at the end of life (Lang & Quill, 2004). Lang and Quill further discuss that the causes for this lack of advance planning are multifaceted and may include communication barriers or the intense emotional response patients and families feel when discussing death. These facts put the ICU nurse in the crucial position of being able to have an impact on the intensity of the care a patient receives at the end of their lives by acting as an advocate for the wishes of the patient.
The traditional culture of the ICU is one of focusing on cure of the patient. During the past century, improvements in biomedical technology have increased the ability of healthcare providers to repeatedly rescue patients from acute exacerbations of chronic disease, but rendering healthcare providers virtually incapable of determining when a patient is terminal. Medical and nursing interventions tend to intensify in small increments as a patientís health deteriorates until finally it is difficult to discern whether care is extending life or postponing death. Neither medicine nor nursing has mastered the ability to set limits of care or demonstrated a consistent awareness of when to cease curative interventions.
Caring for dying patients is often an uncomfortable situation for nurses. Nurses tend to limit involvement with and actually withdraw from dying patients, according to Quint (as cited in Miller et al., 2001). This happens for a variety of reasons ranging from lack of education to the natural behavior that occurs in anxiety provoking situations. Nurses may also feel a sense of frustration and powerlessness because of their inability to change the ultimate outcome for the patient or the grief felt by the family (Chapple, 1999). The reasons for this behavior in ICU nurses can be expanded to include the curative goal of ICU care and the lack of empirical data to support how care of the dying ICU patient can best be delivered (McClement & Degner, 1995).
The highly technical environment of the ICU may overwhelm the senses of laypersons, causing them to feel more stressed and confused and less able to make decisions. There is often a lack of communication between the ICU medical staff, whose goal is to utilize technology for the cure of the patient, and the patientís family, whose goal is simply for their loved one to return home to share life with them. When the patients and their families are confused and conflicted, negative feelings may result. This may cause families to respond with increased anxiety and decreased coping abilities.
The ICU nurse can have a positive impact by responding in a compassionate manner that helps decrease the anxiety patients and families might feel in this situation. Research into the care of patients who had recently died in Canadian ICUs discovered the highest degree of satisfaction among those surviving family members who felt health care providers had treated them with compassion and care. The degree of compassion shown to the family members of the dying patient was rated as more important even than how the providers had treated the patient (Heyland, OíCallaghan, & Cook, 2003). This suggests that, as the probability of the death of the patient becomes more evident, the focus of supportive care and compassion needs to expand to draw the family members in more closely.
Nurses can advocate for improving the care given to dying ICU patients by becoming proactive and involved agents of change within their own organizations. If one does not already exist within their organization, the development of a multidisciplinary end of life palliative care committee may be the first step toward assuming a proactive position to enhance end of life care for patients dying in the ICU and their families. In order to act in the best interests of patients, nurses can learn to bring together the ideas of curative care and palliative care to exist on the same continuum (Rocker, et al, 2000). For example, both ICU and palliative care expert nurses share a strong focus on pain control, relief of distressing signs such as dyspnea, and strong communication skills. The collaboration between ICU caregivers and palliative care experts can result in timelier decisions regarding life-sustaining treatments (Campbell & Guzman, 2003). ICU nurses need to begin discussing the possibility of death with patients and their families, even when the focus is still on cure.
Further, nurses must challenge the traditional paradigm of informed consent from one that includes only the physician and patient to one that includes the nurse and family as active members in the direction of care. The first phase of the Robert Wood Johnson-funded Study to Understand Prognosis and Preference for Outcomes and Risks of Treatment (SUPPORT) trials was able to document serious shortcomings in communication between patients and physicians. Only 47% of physicians knew what their patientís desires for endĖof-life care were. The second phase of the SUPPORT trials demonstrated little improvement in this area. Patients and family members often turn to nurses to translate communications with physicians in complex technological situations (Miller, et al, 2002). The information goes on to state that patients and families look to nurses to advocate for the patient when they feel they are unable to adequately do so. They also look to nurses for input into that decision making process.
Shared decision-making for patient care may include not only the patient, but also the physician, nurses and family (Karlawish, 1996). Nurses may be supportive to families by providing needed information about the changing goals of treatment from curative to palliative. Nurses who are able to be honest regarding the failure of curative treatment without taking away all hope for the ailing family member are perceived as being the most effective (McClement & Degner, 1995). When nurses are not involved, patients and families report increased stress levels associated with the planning of end of life care.
Nursing is a holistic practice, and death is a part of life. To care for a dying patient in the ICU puts the intimate act of dying in a sometimes cold and technological environment. Because of the changing demographics of our society, the future of ICU nursing will expand to include more frequent care of dying patients. Whether the dying patient is being cared for in the ICU by virtue of a decision to terminate intensive treatment or through a lack of communication with the physician, nurses can positively effect the patientís care by becoming both intensive and palliate care experts. In order to adequately meet the needs of the changing population, ICU nurses must shift their focus of care and make care of the dying patient familiar territory.
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I would like to gratefully acknowledge Kathleen Poindexter, PhD(c) RN Associate Professor, Ferris State University, for her guidance, support and encouragement in the composition of this manuscript.
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