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Keywords

Critical care, End-of-life decision making, Nursing care

 

Authors

  1. Erickson, Jodi MSN, BA, RN

Abstract

Bedside nurses in the critical care setting deal with death on a regular basis. Historically, end-of-life decision making has been addressed by physicians with the family and patient, yet nurses may be a better resource for families during the decision-making process. The purpose of this article was to provide a brief review of literature surrounding end-of-life decision making. As patient advocates, nurses should be more actively involved with facilitating the end-of-life decision-making process for critically ill patients and their families.

 

Article Content

An elderly woman in an intensive care unit (ICU) had an emergency total colectomy. The patient's resuscitation status was full code, even though her prognosis was quite poor. A large wound in her abdomen added to the instability of her cardiopulmonary status. At change of shift, the off-going night registered nurse (RN) stated she felt the code status should be discussed with the family. The oncoming RN was new to critical care. She discussed her patient's code status with her preceptor who replied, "That is not my job." In caring for this patient, it became evident to the new critical care nurse that the patient would probably not survive her condition, and, if she did, her quality of life would be severely compromised. The entire situation felt torturous, and as seen in the patient's sister's face, similar emotions were evident. Since the caring RN felt comfortable discussing the meaning of the different code statuses, it seemed almost unethical to not at least broach the subject with the sister. At this point, the patient was completely nonresponsive. The sister appeared relieved by the discussion of possible options for the care of her family member. Although she was not the decision maker for her sister's care, she expressed feeling comfortable discussing it with the doctor and said she would ask the doctor to talk to her sister's husband who was physically unable to be at the hospital. Later, this RN told her preceptor that she had discussed code status with the sister. The preceptor replied, "I am so uncomfortable talking about that to families[horizontal ellipsis] it is completely out of my comfort zone."

 

In the critical care setting, nurses often feel the stress of working with patients and family members who are facing end-of-life decisions.1 Traditionally, the responsibility for end-of-life discussion belongs to the physician. Nurses often feel ill-prepared and awkward in addressing the topic with the patient and family.2 As patient advocates, nurses should be more actively involved with facilitating end-of-life decision-making process for critically ill patients and their families. Advocating for patients is an ethical imperative for nurses.

 

Traditionally, the responsibility for end-of-life discussions belongs to the physician.

 

This article provides a brief review of the literature addressing the role of nurses in the end-of-life decision-making process. Articles focusing on nurse attitudes about end of life, informal family roles in end-of-life decision making, communication strategies when interacting with families and patients, and ideas for empowering decision making will be reviewed. With a more empowered outlook, nurses can better advocate for their patients in making these decisions. Although there are many articles in the literature that focus on end-of-life care after the decision has been made, there are fewer that actually discuss the decision-making process and the involvement of the bedside critical care nurse. The article is not meant to be all inclusive but rather present the highlights of this topic.

 

REVIEW OF THE LITERATURE

Reviewing Nurse Attitudes

Nurses feel personal distress in situations where families have a difficult time making end-of-life decisions.1 Registered nurses also feel stress when the patient wants and the physician wants are not congruent. This can lead to real moral distress in the nurse.3 Hinderer1 examined 4 themes when studying nurses' reactions to death: (1) coping, (2) personal distress, (3) emotional disconnect, and (4) inevitable death. Nurses find that they are better able to cope with death the longer they are nurses1; however, there are times when a nurse has more trouble coping than others. Coworkers often provide the support nurses need when a patient dies.

 

Nurses often express personal distress when a patient is dying.1 Nurses know which interventions will prolong a person's life. When death is inevitable, and these interventions may be futile, those treatments may feel agonizing to the patient, the family, and the nursing staff. The harder it is for families to confront death, the harder it is for the nurse who is providing care for the patient. Families often do not understand the meanings of various code statuses.2 At times, the attention turns from the patient to the family. Often nurses will take extra time with the family when the patient is comfortable.

 

Hinderer1 found that many nurses deal with the death of a patient by emotionally disconnecting from the situation. Experience has taught nurses to be less involved with the emotions of death. This can be considered an essential skill for nurses to maintain balance between work and home. Disconnecting emotionally is not always possible.

 

The final theme Hinderer1 identified is that nurses must realize that death is inevitable. Every person is born and will at some point die. Nurses experience loss and death in their personal lives, which may make deaths at work more difficult for a time. Nurses in her study recognized that death is part of life and, in that recognition, find it easier to deal with death.

 

Clarifying Family Roles

Although clinicians have relatively clearly defined roles in providing care to a patient, families develop roles as well, many of which are informal.4 There are eight identified roles. First, if a person is ill prior to their stay in the ICU, there is usually a family member who is the "primary caregiver." This person may or may not also be the primary decision maker. The second and third roles are that of "primary decision maker" and "family spokesperson."4 The primary decision maker may have been designated legally by way of an advance directive prior to the illness or more informally by the family. Ideally for the clinicians, a family will designate a spokesperson who will be the primary contact for other family members and who will contact other family members when changes occur. This situation is often ideal for family members too because, if communication is good, everyone can be on the same page regarding end-of-life decisions.

 

The fourth role of "out-of-towner" can add complexity to the family dynamics.4 The out-of-towner often has time limitations and feels the need to arrive and get things completed before heading home again. This can be a blessing to decision making or can cause extra family angst. The fifth role of "patient's wishes expert" can enhance the family's feeling of knowing what the patient wanted.4 This person may have discussed the patient's wishes with him/her prior to the ICU stay. Needless to say, the patient's wishes may be open to interpretation by the individual family members.

 

The fourth role of "out-of-towner" can add complexity to the family dynamics.

 

The sixth and seventh roles, the "protector" and the "vulnerable family member," often walk hand in hand.4 The protector may take on the role of protecting the other family member from distress or pain. Perhaps it is a child who wants to protect his/her parent, for example, a son wanting to make his father's death as easy on the mother as possible. It may even be a loved one who wants to protect the patient from knowing the truth of their condition.

 

The final role identified was that of the "healthcare expert."4 In every family, there is usually a person who works in or around healthcare, and often the family members who are not familiar with the healthcare system will ask the "expert" for clarification. At times, this can be helpful for communication between family members and clinicians, but in certain situations, it can lead to conflict, especially if the healthcare expert family member does not agree with the care provided.

 

Each family has different dynamics and must be treated individually. That being said, the ICU nurse and the healthcare team may be able to better meet the needs of the patient and family if they have an idea of informal roles within the family system.

 

Communicating With Families and Patients

There are many barriers to effective communication during the end-of-life decisions.5 Families are under extreme stress, and clinicians have a variety of concerns about all their patients or may not be trained to adequately communicate during these critical conversations. Also, the fast-paced healthcare system itself does not lend well to time-consuming, end-of-life decision making. Advance directives may or may not be present on admission and may or may not always be respected for a variety of reasons.3 One such reason is the wishes of the family may be different from those of the patient.

 

White5 proposed a set of 5 interventions to be used by nurses when communicating with family members regarding end-of-life decision making. These interventions are congruent with a nurse's incredibly important role as patient advocate. The first intervention is for the bedside nurse to help prepare the family to be the surrogate decision maker. The second intervention is to plan regular, interdisciplinary meetings, including the family. The third intervention is to prepare the family for the meeting. The fourth intervention is to support and encourage the family during the meeting to speak up and to ask their questions. Finally, the fifth intervention is to stay with the family after the meeting to answer any remaining questions and to provide additional support.5

 

Better communication has been directly linked to more positive outcomes for families in the critical care setting.6 Intensive care unit nurses often know the patient and his/her family members better than do other members of the interprofessional team, having spent the most time with them.5 Bedside nurses could indeed assist the family more actively through the process, helping them proactively discuss the decision with the primary care provider. Unfortunately, a bedside nurse often has more than 1 patient, and the time constraints could prove challenging. In addition, it may be difficult to adequately train all nurses on the fine art of mentoring a family. White5 proposes that a solution to this could be for a designated nurse other than the bedside nurse to be responsible for facilitating these discussions.

 

Encouraging Decision Making

In the ICU setting, patients and families often feel out of place, insecure, and possibly oppressed.7 Communication is key to encouraging decision making. According to Browning,7 decision making is a process requiring daily interaction. Things can change quickly in the ICU setting, and creating a safe environment for people to share their thoughts and fears can truly benefit the patient.7 The literature identifies a number of open-ended questions that can be used in encouraging discussion. Families often perceive that withdrawing life support is killing someone when it can be framed as preserving the dignity of a critically ill patient, when medical interventions would be futile. Open communication can facilitate these discussions and help enhance the understanding of the process. The families may find it easier to make these difficult decisions when open communication is in place.7

 

Communication is key to encouraging decision making.

 

CONCLUSION

The literature provides copious amounts of information as to how to provide care to the ICU patient once end-of-life decisions are made. However, the challenging aspect of end of life for many ICU RNs is not providing care once the decisions are made, but rather helping facilitate the decision-making process itself. Although there are helpful suggestions in the literature, a structured system actively involving bedside nurses in facilitating the end-of-life decision-making process is crucial to optimal patient outcome. Educating nurses to more comfortably initiate and facilitate these discussions is essential to creating an open discourse between healthcare professionals and family members. Death will never be considered "easy." As nurses, we are obligated to meet our patients where they are and to advocate for our patients and their families. In the future, research should focus on programs to best teach nurses to help facilitate end-of-life discussions with families, patients, and other healthcare professionals, helping create a less awkward, more collaborative environment for patients, families, and healthcare providers. A change in practice, allowing nurse-initiated end-of-life orders, could be explored as well. The nurse who felt out of his/her "comfort zone" would be able to provide information in these situations.

 

References

 

1. Hinderer KA. Reactions to patient death: the lived experience of critical care nurses. Dimens Crit Care Nurs. 2012; 31 (4): 252-259. [Context Link]

 

2. Beckstrand RL, Kirchhoff KT. Providing end-of-life care to patients: critical care nurses' perceived obstacles and supportive behaviors. Am J Crit Care. 2005; 14 (5): 395-403. [Context Link]

 

3. Beckstrand RL, Callister LC, Kirchhoff KT. Providing a "good death": critical care nurses' suggestions for improving end-of-life care. Am J Crit Care. 2006; 15 (1): 38-45. [Context Link]

 

4. Quinn JR, Schmitt M, Gedney Baggs J, Norton SA, Dombeck MT, Sellers CR. Family members' informal roles in end-of-life decision making in adult intensive care units. Am J Crit Care. 2012; 21 (1): 43-51. [Context Link]

 

5. White DB. Rethinking interventions to improve surrogate decision making in intensive care units. Am J Crit Care. 2011; 20 (3): 252-257. [Context Link]

 

6. Scherer Y, Jezewski MA, Graves B, Wu YB, Bu X. Advance directives and end-of-life decision making: critical care nurses' knowledge, attitude, and experience. Crit Care Nurse. 2006; 26 (4): 30-40. [Context Link]

 

7. Browning AM. Empowering family members in end-of-life care decision making in the intensive care unit. Dimens Crit Care Nurs. 2009; 28 (1): 18-23. [Context Link]