Malloy, Pam MN, RN, OCN, FPCN; Virani, Rose MHA, RNC, OCN, FPCN; Kelly, Kathe BSN, RN, OCN; Munévar, Carla MD
Author Affiliations: Pam Malloy, MN, RN, OCN, FPCN, American Association of Colleges of Nursing (AACN), Washington, DC
Rose Virani, MHA, RNC, OCN, FPCN, City of Hope, Duarte, CA
Kathe Kelly, BSN, RN, OCN, City of Hope, Duarte, CA
Carla Munévar, MD, City of Hope, Duarte, CA
Address correspondence to Rose Virani, MHA, RNC, OCN, FPCN, City of Hope, 1500 E Duarte Rd, Duarte, CA 91010 (firstname.lastname@example.org).
The authors declare no conflict of interest.
A nurse working on the night shift enters the room of a patient newly diagnosed with late-stage ovarian cancer. In the still darkness of the night, the terrified patient asks the nurse, "You don't think I will die of this, do you?" In the same hospital, an anxious spouse who has been waiting in the ICU lobby approaches her husband's nurse to seek her advice as she has been asked to consider ventilator withdrawal for her husband who had a massive aneurysm.
In the same hospital emergency department, a nurse talks with an overwhelmed son who has just arrived and has been asked to make decisions about care for his elderly mother transferred from a nursing home with an apparent stroke. The son acknowledges understanding the physician's explanation of her medical status but tells the nurse he wants his mother to be a "full code" because he is certain "God will pull her through" and that many people are praying for her. While these are difficult case scenarios, each of these cases illustrates the challenges for nurses in communication related to palliative care.
Effective and compassionate communication is the foundation of palliative nursing care. Clinical assessment and attention to physical symptoms and psychosocial concerns, responses to suffering, listening to expressions of loss and grief, and recognition of ethical or spiritual concerns are all contingent upon good communication. To respond to these needs, nurses providing palliative care across a variety of populations and settings must be trained in skillful communication.
Communication in nursing practice is not a simple, naturally occurring process, but rather a complex endeavor. Like other skills of professional nursing, communication requires intense education and practice.1,2 The need for expert communication is universal in nursing care but takes on special importance during intense times such as serious illness and end-of-life care.3,4
A significant amount of communication literature in palliative care is related to physician-patient communication, with most of that literature related only to breaking bad news.5,6 Yet nurses are the constant presence across clinical settings, and it is often the nurse who will spend critical time with patients and families helping them to interpret bad news and listening to their emotional responses to such information.6-10
The opportunities for nurses to positively influence patient care through effective communication mirror the phases of serious illness. Most patients/families have fears and concerns about the dying process and death. Patients fear being in pain, unrelieved symptoms, and abandonment. At the initial time of a bad diagnosis, nurses actively participate in providing information, clarifying medical information, and listening to the patient and family responses as they evaluate treatment options. During active treatment such as chemotherapy, nurses are key in listening to patient concerns and symptoms and coaching patients to share these concerns. In recurrent or late-stage disease or for those approaching the end of life, communicating about decisions of significant concern is essential.
There has been significant literature in the field of palliative care regarding communication. A number of authors have developed or used protocols for breaking bad news.1,11 Several authors have proposed that communication skills must be learned and that inclusion of this content in formal curriculum is important. Several authors have addressed the special issues regarding communication with family members.5,6,12,13 Imparting accurate information so that individuals can make informed decisions is essential. Studies have shown that there are also differences in communication needs between patients and family members. Communication needs of patients include the need for information, assistance in the relief of pain and symptoms, an opportunity to disclose feelings, maintaining a sense of control, and a need for knowing that their life had meaning and purpose. Communication needs of family members include the need for information; permission to speak, and to be listened to as they face the decline and death of their loved one.14-16 There is growing consensus that formalized procedures such as routine family conferences and effective use of translators for non-English-speaking patients can facilitate communication.12,17-20
This study adds to the literature by assessing nurse's perspectives on communication in palliative care, which is rapidly a growing field. As our population ages and nurses are increasingly involved in this specialty, this area of palliative care will become even more important. The data provide direction for future educational endeavors and research.
A survey was distributed to 333 RNs attending one of five End-of-Life Nursing Education Consortium (ELNEC) programs. The ELNEC courses (http://www.aacn.nche.edu/elnec) prepare nurses in essential content areas such as pain and symptom management, communication, culture, ethics, grief, and care at the time of death. Subjects voluntarily completed the survey at the start of the course prior to receiving course content. This article reports on survey data collected from these 333 nurses who rated the difficulty of conversations in palliative care and shared their clinical experiences in communicating with patients and families. The project was approved by the institutional review board, and subjects provided consent on the survey for use of the data.
The survey was constructed by the authors and derived from extensive literature review on the topic. The quantitative survey consists of 11 items (Figure 1) asking the nurses to rate common issues in palliative care and nursing communication. The survey items were consistent with aspects of communication identified by key sources including the National Consensus Project for Quality Palliative Care21 and key literature describing communication issues related to nurse-patient communication.2,3,7 The survey was reviewed for validity by a panel of nurse experts and pilot tested by nurses attending an ELNEC course. Nurses rated the aspects of communication on a scale of 0 = not difficult to 10 = very difficult. Additionally, the participants were asked two open-ended questions in which they were invited to share examples of positive and negative experiences they had related to communicating with seriously ill patients or families.
Study findings are presented in Table 1. The participants were an experienced group with a mean length of time in nursing of 20 years, and the nurses were from diverse practice settings. The nurses' ratings are presented according to which ELNEC course they attended. This included ELNEC specialty courses in pediatrics, geriatrics, critical care, or the general core course. Overall group ratings indicate that the most difficult areas were communicating with patients and families from different cultures, talking to patients after they had received bad news, and talking about palliative care issues or religious/spiritual issues.
Table 1 also highlights some differences across the various courses. It is interesting to note that, in all four groups, talking with patients once they have received bad news and talking with physicians about palliative care issues were rated as key concerns. Talking with patients about spiritual concerns was also rated as very difficult. Talking with nurse colleagues about palliative care and talking with patients about pain or symptoms were rated as not difficult.
Figure 1 illustrates the difference of responses of the nurses surveyed according to years of experience. Nurses with less experience (2-10 years of nursing) reported more difficulty speaking with patients once they received "bad news" (mean = 6.7 on a scale of 0 = not difficult to 10 = very difficult) versus nursing with more experience (>10 years, mean = 4.3; >20 years, mean = 3.8; >30 years, mean = 2.7). The survey also illustrated that nurses with less experience (<10 years) reported having more difficulties than experienced nurses (>10 years) in the following areas: talking with family members of seriously ill patients (mean = 4.3); discussing decisions such as advanced directives, DNR orders, and so on (mean = 3.5); talking with physicians about palliative care issues (mean = 5.3); and talking to patients or families about hospice (mean = 3.6). However, nurses with less than 20 years of experience had more difficulty speaking with patients or families of different cultures (<10 and 20 years, mean = 5.1 and 5.2, respectively) compared with nurses with more than 20 years' experience (21-30 years, mean = 4.4; 31-47 years, mean = 4.4). In reference to Question 3, an interesting finding was that nurses with less than 10 years and 21 to 30 years of experience had more difficulty speaking with patients and families about spiritual/religious concerns (mean = 4.7 and 4.3, respectively) than nurses with 11 to 20 years of experience (mean = 3.5). Nurses with greater than 30 years of experience reported the least difficulty speaking with patients/families about spiritual/religious concerns (mean = 2.3). Another interesting finding was that nurses with more years of experience (>30 years) found it more difficult to remain silent and listen to difficult feelings from patients or families (Question 5) (mean = 3.4).
Tables 2 to 5 present examples of the narratives provided by the participants as they shared examples of their experiences of bad and good communication with patients and families. Table 2 presents examples from the pediatric group; Table 3 from geriatrics; Table 4 from the ELNEC core course, which included hospital and hospice nurses; and Table 5 from critical care. The narratives offer rich insight as to the vital roles of nurses in communication with seriously ill patients and their families. Nurses often described instances where they were called on to communicate or validate difficult news. There was one account where a resident from a hospice was dying of a chronic disease. Her son, who was also a physician, was notified and flew in immediately. It had been some time since he had last seen his mother and felt it his responsibility to now have her in his care. Having medical knowledge, he began inquiring about his mother's laboratory work. The nurse gently explained to him that his mother was surrounded by great physicians who had been doing the best for her and that he was her son. This communication provided the son valuable time with his mother. He cried and was with great relief and thanked the nurse for giving him permission to be the son.
Nurses also frequently described how their actions spoke much more than words. Nurses were present, offering their ability to be with patients, to remain present at the most difficult times and to listen. One narrative described how a patient previously had cervical spine surgery and as a result had to wear a neck brace. This particular neck brace provided more comfort since it included heat and aromatherapy features. While repositioning the patient, her neck brace got caught and tore. The family was very moved as the nurse took the neck brace and sewed it back together. Through this small gesture, the family saw how committed the patient's nurse was to the patient and family.
The nurses' narratives often described instances in which they served as advocates for the patients' preferences or as agents when there was conflict. An example of this taken from one of the narratives shares how a nurse caring for one of her patients in the pediatric unit became very close to the patient and family. A child, knowing that he would be dying soon, became increasingly aware of his spiritual needs and began asking the nurse questions about God and asked her to read from a children's Bible his grandmother had given him. The child would hide the Bible every time the father would come to visit, and later the child explained to the nurse that his father was opposed to him having any religious beliefs. One night, as he sensed that his death was coming soon, he asked the nurse if she could baptize him in the bathtub. She did baptize him, and the boy died the following day. She was pleased to hear his concern and respond to meet his need. Such narratives also illustrate the very complex family dynamics in palliative care.
The narratives generally included communication with family caregivers and illustrate how frequently nurses support families as a key component of care. The narratives illustrate the nurses' frustration in these complex care situations and communication concerns, while many narratives also depicted tremendous satisfaction by the nurses when they felt that they had been able to foster effective communication.
The study was limited to nurses attending palliative care training, and this may have been a select population. Future studies should include more diverse samples of nurses. Intervention studies are also needed to provide communication training and to evaluate the outcomes of that training on patient, family, and nursing outcomes.
Communication is a cornerstone of basic nursing practice and a fundamental skill across all settings of care to identify the patient's goals of care. In the field of palliative care, recent literature has emphasized the role of medicine in "breaking bad news" with much less emphasis on the role of nursing in supporting patients and families after bad news has been received and throughout the course of illness and until the time of death.21-26
The narratives provided by the participants demonstrate powerful and often emotional accounts of nurses' experiences. The data illustrate the needs for support as nurses have difficult conversations and the need for skills-based learning such as through role play so that nurses can practice their skills.
Results of the study reveal many aspects of communication that are challenging for nurses yet vital for patient care. There are opportunities for addressing communication in both undergraduate and graduate education and for continuing education of nurses in the clinical setting. As patients and families continue to face serious illness, transition to palliative care, and make difficult decisions, nurses will play a critical role and remain as the predominant professionals at the bedside.
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