Nurses and other healthcare providers identify end-of-life (EOL) decision making as the most frequent ethical dilemma faced in care of the critically ill (Oberle & Hughes, 2001; Svantesson, Sjokvist, Thorsen, & Ahlstrom, 2006). In EOL care (EOLC), during which resuscitative efforts may be futile or against the wishes of the patient or surrogate, inappropriate prolongation of life can violate patient dignity and inordinately affect limited resources. The administration of "aggressive care," when the patient is not expected to benefit from that care, produces the highest level of moral distress for critical care staff nurses (Elpern, 2005).
What responsibility do nurses have with EOLC? Two fundamental components of professional nursing are patient advocacy and respect for the inherent dignity, worth, and uniqueness of every individual (American Nurses Association, 2001). Responsibility goes farther for the profession that provides services vital to humanity and the welfare of society (Joel, 2003; Mappes & Degrazia, 2005). In essence, the nurse's primary focus is patient advocacy, with an extended responsibility to the community at large. The American Association of Critical Care Nurses' (2006) public policy statement adds that the critical care nurse is to "respect and support the right of the patient or the patient's designated surrogate to autonomous informed decision making."
What are key issues for patients and families in EOLC? Not surprisingly, spiritual beliefs greatly influence the death experience and decisions made at EOL. Much literature focuses on the role of the nurse in the use and termination of life support, and volumes are available on spiritual care. However, relatively little is written on the influence that spiritual beliefs have on the decisions patients and families make at EOL. Yet, a knowledge of these beliefs is essential to assisting the patient and his or her family in making choices about care.
Clearly, resources are needed to help healthcare professionals care for patients near EOL. Specifically, more definitive documentation tools are needed for gathering data related to EOLC decisions. This article addresses key issues in EOLC and offers a new assessment GUIDE (Figure 1 on next page) to facilitate spiritual assessment so that patient and family wishes can be better represented in EOLC.
WHAT IS IMPORTANT?
Violation of patient dignity and autonomy is a primary concern in EOLC. In a study involving 340 patients, 332 families, and physicians and other care providers, more than 70% of all the respondents rated decisions about treatment preferences among the most important items in EOLC. Helping others come to peace with God was rated as having greater importance to patients than to physicians (Steinhauser, Christakis, Clipp, McNeilly, McIntyre, & Tulsky, 2000), suggesting that an understanding of spiritual needs is paramount. Nurse researchers Kirchhoff and Beckstrand (2000) found in a study of 1,999 critical care nurses that the fourth leading obstacle in providing care to dying patients and their families was "providing life-saving measures at families' request even though the patient had signed an advance directive requesting no such care (p. 99)."
In support of patient dignity and autonomy, the following strong recommendation was made in the 2003 Challenges of End-of-Life Care in the ICU: Statement of the 5th International Consensus Conference in Critical Care (Thompson, 2004):
Respect for patient autonomy and the intention to honor decisions to decline unwanted treatments should be conveyed to the family. The process is one of negotiation, and the outcome will be determined by the personalities and beliefs of the participants.
Another key issue is what patients and families understand. In EOLC situations, family members frequently are asked what they want to have done. However, they may not fully understand what treatments are appropriate in a given situation. Decisions regarding levels of resuscitative efforts, feeding tubes, use of dialysis and vasoactive medications, and use and termination of mechanical ventilation can pose difficult dilemmas for patients and families. Use of "do not resuscitate" terminology may cause families to feel guilt that they are not doing everything possible to maintain the life of their loved one.
Much advanced technology is now available to prolong life, but often there is a lack of preparation or documentation of how the patient and family wish EOLC to be orchestrated. A study of 864 critical care nurses confirms that family lack of understanding about lifesaving measures is a prominent obstacle in providing EOLC (Beckstrand & Kirchhoff, 2005).
As noted, guilt feelings can influence patients' and family members' EOLC decisions. Typically, this is a greater problem for the family because only 3 to 4% of critical care patients can participate in EOLC decision making (Benner, 2001, Prenergast, 2000). A 2006 National Institutes of Health report confirms the difficult feelings that influence care decisions by families:
A recent survey found most family caregivers involved in a recent decision to withdraw or withhold life support from a relative reported feeling uncertainty, guilt, regret, and anger. Those caregivers who accepted their role and believed they were doing the right thing were more at ease with their decision, felt they had learned from the process, and grew closer to other family members. (p. 1)
The End-of-Life Nursing Education Consortium (ELNEC) believes it is crucial for patients and families to acquire freedom from health professionals to make their decisions without guilt or feelings of failure and to see that their decisions are being carried out. The competency necessary for nurses to provide high-quality EOLC includes the assessment and treatment of spiritual needs (ELNEC, 2006).
Better communication with families can decrease guilt and stress in EOLC. A recent multisite study in Paris, France, with spouses and children of 126 patients dying in ICUs found that when the physicians and nurses were given a VALUE mnemonic to use in care and the families received a brochure about bereavement, families experienced 25% less guilt, stress, anxiety, and depression at the time of death and 90 days later (Azoulay, 2007; Lautrette et al., 2007). The VALUE mnemonic stands for Value what family members say, Acknowledge emotions, Listen, Understand who the patient is by asking questions, and Evaluate. Implementation of better communication may be easier than thought. Azoulay and colleagues report that healthcare staff received no training but simply were asked to use the mnemonic in communicating in family conferences.
DO ADVANCE DIRECTIVES HELP?
Unfortunately, advance directives may be of limited value in EOL decision making (Tulsky, 2005). In 2001, it was estimated that only 15 to 25% of Americans had advance directives despite the Patient Self-Determination Act passed in 1990 (Habel, 2001). When patients have advance directives, some researchers have concluded that the patients' preferences for resuscitation are not routinely known and, alarmingly, in some studies advance directives had no affect on EOL treatment decisions (O'Rourke, 2000). Educational programs for healthcare providers appear to be more promising than advance directives for ascertaining and instituting patients' wishes (Hanson, Tulsky, & Danis, 1997).
In advance care planning, perhaps too much emphasis is placed on specific treatment choices and not enough on responding to patient and family emotions, beliefs, and goals for care (Tulsky, 2005). Although advance directives may have a significant effect, their use may not prove to be the ultimate solution for improved EOLC decision making (Roter, 2000).
A "GOOD" DEATH?
More than 2.4 million deaths are recorded yearly in the United States. Most of these deaths (80%) occur in hospital settings, where one-fifth of intensive care unit (ICU) patients die (Beckstrand & Kirchhoff, 2005). Nurses working in ICUs and hospices are more likely to perform EOLC on a regular basis than nurses practicing in any other area (Badger, 2005). Because nursing is concerned with providing quality care at EOL, what do we know about this process and what literature calls a "good" death? What role do spiritual beliefs play?
The hallmark Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) examined more than 9,000 patients (SUPPORT Investigators, 1995) with the objective of improving EOL decision making and reducing the frequency of a mechanically supported, painful, and prolonged process of dying. The results showed several shortcomings in the care of seriously ill hospitalized patients, including communication between patient, family, and physician and the physician's knowledge of his or her patient's preference not to be resuscitated. Not surprisingly, more proactive measures related to communication were recommended.
A 2004 study concluded that family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience than those whose decedents died in hospitals (Teno et al., 2004). Hospice spiritual assessment forms include issues such as fear of death and abandonment, spiritual emptiness, unresolved grief, unresolved past experiences, confusion or doubts about beliefs, and the need for reconciliation, comfort, or peace (Dudley, Smith, & Millison, 1995).
Sadly, many studies have explored behaviors of healthcare providers that influence EOL decision making by patients and families without mention of spiritual considerations (Thelen, 2005). Suggestions made by 485 critical care nurses to facilitate a good death included advocating dignity in the dying experience, treating pain, facilitating earlier limitations of life-sustaining treatment or not initiating it, demonstrating presence, gaining information and carrying out wishes, and communicating effectively across the healthcare disciplines (Beckstrand, Callister, & Kirchhoff, 2006). Spiritual considerations were not specifically mentioned.
INCORPORATING SPIRITUAL CARE
It might be assumed that spiritual or religious beliefs are incorporated into a person's worldview and that the individual will respond accordingly. However, when faced with complex issues at EOL, patients and families may be unsure of what they consider ethical or may not know how their spiritual beliefs apply. A 2005 study of 44 nurses concluded that "nurses' greatest frustration with EOL transitions did not involve patients' care but was related to dealing with the complex emotions and indecisiveness of patients' families" (Badger, 2005, p. 519).
Furthermore, an appropriate clergy or hospital chaplain is not always available in crisis situations and may lack the rapport the nurse has established or have insufficient knowledge of the patient's history, wishes, and plan of care. The nurse's role as patient advocate and care coordinator should include consideration of spiritual issues. Nurses should not defer this responsibility but should work in close collaboration with the chaplain or clergy. With greater understanding of the patient's spiritual beliefs, the nurse may be better equipped to assist the patient and family in connecting spiritual values and beliefs to decisions.
Recognizing this, the American College of Critical Care Medicine issued clinical practice guidelines in February 2007 for the support of patients and their families in the ICU including:
"spiritual support, encouraging and respecting prayer and adherence to cultural traditions, which help many patients and families to cope with illness, death, and dying. In addition to formal spiritual counseling by a chaplaincy service, educated members of the ICU staff might help to accommodate the spiritual traditions and cultural needs of patients and families" (Barclay & Lie, 2007, p. 620).
SPIRITUAL BELIEFS AND EOLC
In times of serious illness and impending death, spiritual and religious beliefs influence the course of action a person believes is appropriate (Boyle, 2003; Kaldjian, Jekel, & Friendland, 1998). Religious beliefs usually are associated with a particular organized system of beliefs and practices or rituals. Spiritual beliefs are related to human needs for meaning and purpose, hope, forgiveness or acceptance, and peace of mind (Ferrell & Coyle, 2006). Both are critically important at EOL, yet organized protocols are scarce that help healthcare providers assist patients and families to identify their spiritual beliefs and process how these beliefs influence EOLC decisions. One author summarized the issue of spiritual assessment saying, "Perhaps it would not seem so difficult if protocols for assessing spiritual needs became as routine as protocols for assessing vital signs" (Johnson, 2005, p. 25).
Do spiritual and religious beliefs matter? The most recent American Religious Identification Survey (Kosmin, Mayer, & Keysar, 2001) found that 81% of American adults claim a specific religion; 77% identified themselves as Christians, although this number was estimated to slip below 70% in 2008 (Ontario Consultants on Religious Tolerance, 2008). Of the 77% in 2001, 52% identified themselves as protestant and 24.5% as Roman Catholic. Additionally, 1.3% stated that they were Jewish, and 0.5% claimed to be Muslim, Buddhist, agnostic, or atheist, respectively. Only 14.1% said they followed "no religion."
In 2002, a Gallop poll found that 50% of Americans consider themselves "religious," 33% "spiritual but not religious," and 10% "neither spiritual or religious" (Ontario Consultants on Religious Tolerance, 2008). Although the demographics of religion and spirituality are changing in America, spirituality remains an important part of life.
Unfortunately, much of the research relating to the nurse's perceived role in EOLC has focused on nurses' experiences with dying patients, coping strategies after a patient's death, and perceived behaviors of nurse experts (Beckstrand & Kirchhoff, 2005). Nurses need to be educated comprehensively with regard not only to the physiologic but also to the psychological, emotional, cultural, social, and spiritual status of patients and families.
It is beyond the scope of this discussion to expound on multiple religious belief systems, and readers are referred to other helpful sources (Ferrell & Coyle, 2006; Galanti, 2004; Kirkwood, 2005). In a multicultural society, nurses are challenged by understanding, assessing, and caring for patients of cultures and faiths different from their own. Without sufficient knowledge and understanding of patients' and families' spiritual beliefs, the nurse may not accurately process how to assist them in arriving at decisions (Jacob, 2002; Kirkwood, 2005). In the practice setting, a critical need exists for nurses to have convenient access to information on belief systems.
The nurse can assist patients and families in EOLC decision making by recognizing their unique view of death based on their system of beliefs. Spiritual beliefs, especially those related to the afterlife, can significantly affect the decisions patients and families make about EOLC. Nurses need to approach the topic of spiritual beliefs related to death with ease and expertise. It can be tragic when an individual's wishes have not been articulated due to lack of knowledge, lack of opportunity to formulate and facilitate their wishes, or both.
Unfortunately, in many arrest situations, there may not be time to explore the patient's view of death and consider EOLC wishes. Family members or surrogates may not be available to speak for the patient. Once a patient is "in the system," he or she will be resuscitated unless there is indication otherwise. Elderly populations living at home and in extended care facilities urgently need to be targeted for appropriate advance directives to be put into place. Although some cultures do not believe in advanced care planning or are uncomfortable with it, many older adults want to discuss EOLC wishes.
A GUIDE FOR ASSESSING BELIEFS
The EOLC assessment GUIDE (Gather, Utilize, Inform, Document, and Evaluate) (Figure 1) is a tool to facilitate spiritual assessment and communication so patient and family wishes can be better represented in EOLC decision making. The GUIDE tool provides a framework to assist nurses in gathering, organizing, and documenting data related to EOLC patient and family decisions. The instrument incorporates the spiritual beliefs of the patient and family, taking into consideration how these beliefs may influence EOLC decisions.
The GUIDE was formulated from EOLC literature and observations from the author's experience caring for the critically ill. This instrument was reviewed by ICU physicians and nurses who agreed the GUIDE could provide the healthcare team with documented information that could be reviewed and updated easily. The GUIDE can be initiated during initial patient and family assessment, with updating as appropriate. The goal is to enable the healthcare team to assist the EOL decision-making process more effectively and improve patient care outcomes. It is the intention of the author that the tool be used for future research in clinical settings and refined.
More controlled research assessing the effect of spiritual interventions is needed to determine methods that can be used to support spiritual well-being (McClain, Rosenfeld, & Breitbart, 2003). The GUIDE can provide documentation essential for research, quality management, and accreditation.
Questions in the GUIDE related to spiritual beliefs can assist families in articulating and working through unresolved issues and then coming to decisions with which they are at peace. The GUIDE addresses concerns raised in prior research and asks questions that help the healthcare team understand the patient and family. Use of the GUIDE can help nurses to address issues that allow families to feel more comfortable with life-sustaining measures appropriately aligned with the patient's wishes. The GUIDE may better facilitate the articulation and ongoing documentation of patient and family wishes. However, instead of mechanical completion of the GUIDE in one setting, the instrument is meant as a tool in the process of care.
The need for nurses to maintain open lines of communication with patients and families is well established in the literature. The innovative GUIDE presented in this article can provide a means of guiding and documenting communication in an organized and detailed format. Most patients do not have enough knowledge about their medical condition and potential treatments to prepare advance directives (Scherer & Jezewski, 2006). This underscores the importance not only of educating patients but also of helping them process the information to make EOLC decisions congruent with their beliefs and wishes. The nurse may need to assist patients and families by clarifying terms and assisting them with identifying and prioritizing their values (DeWolf Bosek, & Savage, 2007).
Written information related to life support and resuscitation should be developed and presented in lay terms according to the policies of a given institution. Such information could serve nurses as an easily accessible reference. Questions to be considered in teaching include "What could be the burden(s) imposed on the patient as a result of the treatment?" and "What is the hope of benefit to the patient?"
The GUIDE is designed to aid the nurse in helping patients and families work through the EOL decision-making process and document this process. The instrument can be modified to provide a way of tracking information from shift to shift and day to day. With this information in hand, members of the healthcare team can enter a family conference with a firmer knowledge base from which to proceed and make decisions with the family that reflect with greater accuracy the patient's desired plan of care.
a Glance
EOLC decision making is the most frequent ethical dilemma faced in care of the critically ill
A significant problem in EOLC is inadequate communication between patients, families, and healthcare providers
Spiritual beliefs play a major role in EOLC decision making, yet few tools exist for helping providers assess and incorporate beliefs into EOLC
A new GUIDE provides a framework for Gathering, Utilizing, Informing, Documenting, and Evaluating data related to EOLC
Web Resources
* End-of-Life Nursing Education Consortium (http://www.aacn.nche.edu/ELNEC/about.htm)
* End of Life: Helping With Comfort and Care (http://www.nia.nih.gov/HealthInformation/Publications/endoflife/)
* http://CaringInfo.org DOWNLOAD YOUR STATE'S ADS (http://www.caringinfo.org/stateaddownload)