Supporting Hope and Prognostic Information: Nurses’ Perspectives on Their Role When Patients Have Life-Limiting Prognoses

Abstract

Context

Clinicians often feel challenged by the need to deliver difficult prognostic information to patients with a life-limiting illness while, at the same time, supporting their hopes. Few studies have examined nurses’ perspectives on their roles in meeting these patient and family needs.

Objectives

Our objectives were to 1) describe nurses’ perspectives on meeting patients’ needs for hope and illness information; and 2) offer insights for interventions designed to improve communication about end-of-life care for patients and their families.

Methods

Using experienced interviewers, we conducted one-on-one, semi-structured interviews with 22 nurses caring for patients with advanced chronic obstructive pulmonary disease or cancer. Interviews were analyzed using a limited application of grounded theory.

Results

Three themes emerged: 1) Nurses support patients' hopes by understanding individual aspects of these hopes, focusing on patient quality of life, and building trust with patients; 2) Nurses provide prognostic information by assessing what the patient knows and following their lead. Nurses report doing these two activities independently; and 3) Nurses identify activities associated with the provision of prognostic information that required collaboration with physicians. Important barriers that complicate effective discussion of prognosis with patients and families were identified.

Conclusions

Nurses describe behaviors that are useful when meeting patients’ and families’ needs for hope and which they are comfortable implementing in practice, without collaboration with other clinicians. By contrast, most behaviors related to meeting patients’ and families’ needs regarding prognostic information are completed collaboratively with physicians. These findings provide insight for the development of interdisciplinary interventions targeting communication around end-of-life care.

Introduction

Patients diagnosed with chronic, life-limiting illnesses experience a wide range of emotions, often using hope to cope with the consequences of living with these diseases. The therapeutic value of hope has been well established (1–3) and numerous studies have examined the meaning of hope for dying patients (4–9). However, clinicians often report that preserving hope is a major barrier to discussing prognosis or end-of-life care with patients (10, 11). The importance of the need to balance truth-telling and hope within professional relationships has been recognized (2, 12). Clinicians are often challenged by the desire to help patients maintain hope while not promoting a sense of false hope in the context of life-limiting illnesses (13). Thus, there are many factors that clinicians need to take into account when contemplating prognostic discussions, including taking an individualized approach to determine patients’ information needs and acknowledging possible resistance to receiving prognostic information (12, 14). We have previously described patient and clinician perspectives on supporting hope while honestly discussing prognosis (14, 15). Prior studies have not examined nurses’ perspectives on specifically how they support hope while providing or supporting information about prognosis for patients with chronic and life-limiting illnesses. This lapse in the literature is notable because, compared with other health care professionals, nurses spend the most time with dying patients; furthermore, nurses have identified the important roles communication and hope play in these interactions (4, 16, 17). Exploring nurses’ approaches to supporting patients’ hope while supporting prognostic information may offer insight for interdisciplinary interventions aimed at improving communication about end-of-life care.

Although many types of health care professionals deliver and support information about diagnosis, prognosis and treatment to patients and patients’ families, specific role responsibilities in the provision of such information are often ill-defined (18). The initial disclosure of information is often the role of the patient’s physician, with other members of the health care team assisting patients and their families to integrate a new diagnosis or prognosis into their day-to-day life. Studies have shown that patients with cancer want honest information about their disease and prognosis, but do not want clinicians to take away their hope (19–24). Studies also suggest similar concerns among patients with chronic obstructive pulmonary disease (COPD) (25, 26). Inability to provide honest and accurate information while maintaining patients’ hope may result in adoption of approaches that cause physicians and nurses to avoid discussing prognosis or end-of-life care (10, 11, 27, 28). Improved communication among the interdisciplinary team may offer an opportunity to overcome this common but problematic approach.

This report is part of a qualitative study exploring the perspectives of patients, family members, physicians and nurses on ways to support patients’ hopes while providing or supporting truthful information about prognosis (14, 15). In this report, our specific aims were to examine nurses’ perspectives on how they do or do not support patient and family hopes while also providing and supporting honest prognostic information. Understanding how nurses conceptualize their roles and the barriers they encounter may offer new insights for the development of interdisciplinary interventions to improve communication about end-of-life care among patients and the entire health care team.

Methods

Design

Our study utilized qualitative, in–depth interviews with patients (n= 55), family members (n =36), physicians (n=31) and nurses (n=22) to assess their perceptions of hope and prognostic information in the context of life-limiting illness (14). This report describes the findings from the nurse interviews. During these interviews, nurse participants were asked to discuss how they supported dying patients’ hope while also providing or supporting the provision of information about illness and prognosis. Some examples of the interview questions are: “Have you experienced a challenge or tension in providing both hope and information to your patients?” and “How have you approached this patient’s need for hope?” (complete interviewer’s guideavailable online at ) (29). All study procedures were approved by the Human Subjects Division of the University of Washington.

Participant Recruitment

Participants for the larger study were recruited using a nested approach, with physicians as the initial participants. Physician participants were selected to represent a broad spectrum of attitudes toward and experience with palliative care. Each enrolled physician was asked to identify four patients in their practices based on two eligibility criteria: 1) diagnosis of advanced cancer (defined as metastatic solid cancer or non-operable lung cancer) or severe COPD (defined as FEV₁ <35% predicted and oxygen dependent); and 2) the physician “would not be surprised if the patient died from any cause in the next year” (30). Patients were excluded if they did not speak English sufficiently well to participate in an interview.

Nurse participants were recruited using one of two strategies. Enrolled patients identified nurses involved in their care and with whom they had interacted. However, if patients did not identify a nurse, study staff asked the patient’s physician if he or she worked with a nurse who was involved in the participating patient’s care and this nurse was approached for participation in the study.

Data Collection

Semi-structured, one-on-one interviews were conducted by two experienced interviewers. Interviewers completed a minimum of five hours of interviews observed by an investigator before conducting solo interviews. Investigators observed interviews periodically throughout the study for quality-control purposes. Nurse participants were interviewed at their places of employment, between January 2003 and December 2006. Nurses were asked about their specific communication with the patient enrolled in the study and to discuss their communication with dying patients in general. Nurse interviews took, on average, 60 minutes (range 50–70) and were audiotaped and transcribed verbatim.

Qualitative Analysis

In order to examine nurses’ views of their role in supporting patients’ hope while providing or supporting truthful information about their illness and prognosis, we used a limited application of grounded theory (31, 32). One investigator (LFR) analyzed all interviews and used open and axial coding techniques. During the open coding phase, we identified categories and subcategories from nursing speech (e.g., supporting hope or providing information), as well as characteristics of each category and subcategory (e.g., determining the patient’s individual meaning of hope or assessing the patient’s knowledge level about their disease and prognosis prior to providing information). During the axial coding phase, we identified ways in which the categories related to larger themes as well as the relationships between themes (e.g., nurses’ approaches to support hope and provide prognostic information that is within their scope of practice versus their approaches that required collaboration with a physician.) Trustworthiness of the coding was established by recoding of a random sample of 30 data passages by a second investigator blinded to the initial coding results. Results of the recoding exercise yielded strong agreement (80%) (33).

Results

Description of the Participants

Nurse participants (n=22) were from the Seattle-Tacoma area. The majority of the respondents were female (91%) and three-quarters were white (77%), with an average age of 47 years (Table 1). The majority held a baccalaureate degree or higher (77%), including six masters-prepared nurses in advanced practice roles. Approximately one-half of the nurses worked in oncology, one-fourth in pulmonary, and one-fourth worked in general medicine, seeing both pulmonary and oncology patients. The average number of years in practice was 19, reflecting the aging demographics of the nursing profession.

Table 1.

Nurse Participants

	Nurses (n = 22)
Average Age (SD)	46.6 (8.6)
Female (%)	20 (91%)
Ethnicity (%)
Caucasian	17 (77)
African American	2 (9)
Asian	2 (9)
Hispanic or Latino	1 (4.5)
>1 ethnic identity	0
Nurse specialty (%)
Pulmonary	6 (27)
Oncology	10 (45)
Mixed	6 (27)
Nurse Education
BSN (%)	17 (77)
Staff Nurse	16 (72.7)
Nurse Practitioner	4 (18)
Clinical Specialist	2 (9)
Mean years in practice (SD)	19.3 (8.9)

Nurses’ Approach to Meeting Needs for Hope

Nurses perceived that patients and families wanted their hopes to be supported and often provided this support independent of interactions with physicians (Table 2). Through interactions with patients, several types of hope were identified, including hoping for a good day, hoping to be well enough to attend a granddaughter’s wedding, hoping for a cure, to hoping for a symptom-controlled death. One nurse practitioner working in an oncology practice explained the important role that having hope played for her patient and how, having been able to understand that role, she was better able to support and bolster her patient:

Table 2.

Independent Nursing Activities and Prognostic Information

	Theme	Example Quote
Hope	Determine the individual’s meaning of hope	I assess his hope at every visit, knowing it can change every day. I totally support whatever kind of hope he possesses (Nurse #14, Nurse Practitioner, Oncology Practice)
	Focus on quality of life	I get to quality of life by asking how they want to live their life, we have to live until we die (Nurse #31, Clinical Nurse Specialist, Oncology Practice)
	Build trusting relationships with patients	Nurses are the first point of contact so patients confide in us and we build upon that relationship. (Nurse #19, Staff Nurse, Oncology Practice)
Information
	Assess what the patient knows about the disease/prognosis	I always begin with their understanding of the illness then what gives their life meaning (Nurse #26, Clinical Nurse Specialist, Palliative Care)
	“Follow the patient’s lead” to determine their information needs	I let the patient and family guide me on what info they want and to what degree (Nurse #26, Clinical Nurse Specialist, Palliative Care)

I assess his hope at every visit, knowing it can change every day. There is a fine line of hope and denial, the sword we walk…that we sharpen every day. I totally support whatever kind of hope he possesses. (Nurse #14, Nurse Practitioner, Oncology Practice)

Nurses acted independently when supporting patients’ and families’ needs for hope. Three activities commonly were reported with patients and their families: a) asking them to describe what they were hoping for; b) talking about quality of life issues; and c) building trust.

Asking patients and families about their hopes

By ascertaining what patients and families hoped for, nurses avoided false assumptions and were also better able to provide support for articulated hopes and goals. One oncology infusion nurse noted:

Every patient has different types and layers of reactions to their illness and prognosis. The key is to get to know the person, what they hope for and how they cope, so you can tailor your support. (Nurse #18, Staff Nurse, Oncology Practice)

Talking about quality of life was identified as one of the ways nurses assisted an individual patient to obtain his/her goals for living each day as he/she desired. If possible, it included helping patients reach realistic milestones. It also included management of pain, dyspnea, and other symptoms.

I get to what quality of life is for them by saying this: “You understand your disease is…. gonna take your life at some point in time. We don’t know exactly when. So how do you want to live your life? And what do you want to do with your life?” We all have something that is going to do us in and take our lives, but we have to live until we die. (Nurse #31, Clinical Nurse Specialist, Oncology Practice)

Building trust with patients was identified by nurses as key to successfully meeting their patients’ and families’ needs for hope.

Nurses are the first person the patient sees, so there are a lot of things they tell us that they don’t tell the physician. This helps us establish a relationship which helps us support their sense of hope. (Nurse #19, Staff Nurse, Oncology Practice)

Nurses discussed how the trust arising out of being available and present for patients and their families provided support during times when patients’ or families’ own hopes faltered.

When a patient feels overwhelmed with whatever they have just come across, you cannot play down that feeling of hopelessness…It’s something they have to go through and I try to be there for them, talk and listen, then you can eventually lead them in the right direction of building up hope again. (Nurse #23, Staff Nurse, Pulmonary Practice)

Nurses’ Approach to Meeting Needs for Illness Information

In contrast to this independent approach to addressing patients’ and families’ needs for hope, nurses emphasized their dependence upon interactions with the patient’s physician when providing and supporting informational needs (Table 3). While their roles included some independent activities (i.e., assessing patients’ baseline knowledge), more activities required interdisciplinary coordination and collaboration (i.e., clarifying and resolving communication issues). Some respondents reported a perception that prognostic information was outside nurses’ scope of practice entirely and reflected on the clinical challenges this presented.

Table 3.

Interdependent Nursing Activities and Prognostic Information

Theme	Example Quote
Being informed about what the physician has said	I had no idea what the doc just told him…this could have destroyed the patient’s trust in us (Nurse #20, Staff Nurse, Oncology Practice)
Communicating information from patients back to physicians	Sometimes I have to go gently into the [physicians] office and say “This is what is going on with the patient and have you two talked about this?” (Nurse #23, Staff Nurse, Pulmonary Practice)
Nurses continue discussions after the delivery of bad news	I consider my job to reinforce and give the patient information in a way that leaves them with hope, like providing them with resources to help them cope. (Nurse #15, Staff Nurse, Medicine Clinic)

Independent Nursing Activities

Assessing what the patient already knows about his or her disease or prognosis was viewed as a communication skill that laid the groundwork for assessing patients’ and families’ illness information needs. This action was described as something that could be done independently and was within the nurses’ scope of practice.

I need to know specifically what they understand about their condition, because that’s the launching off point. If they say, “Well, I’m about to get better,” that re-directs your conversation. So I always begin with what they understand about their illness, what’s important to them and what gives their life meaning. (Nurse #26, Clinical Nurse Specialist, Palliative Care)

Following the patient’s lead was another approach nurses relied upon to determine the patient’s and families’ information needs and desires:

I think it is a challenge to sort out how much information about their disease they want, so I always let the patient and family guide me on what they want and to what degree. I ask them, “How much information do you want me to share with you. Do you want all of the details or just the big picture?” (Nurse #7, Staff Nurse, Intensive Care Unit)

Coordinated/Interdependent Nursing Activities

In contrast to these independent communication behaviors, nurses identified activities that required coordination, support and, at times, negotiation with physician colleagues.

Being informed about what the physician had already told the patient was critically important for these nurses to be able to meet patients’ and families’ needs for prognostic information. Nurses discussed the ramifications of not being informed of the specifics of physicians’ conversations with patients about the patient’s disease status. To address this gap in interdisciplinary communication, nurses would “feel out” what the patient had already been told by the physician. Nurses voiced concern that patients and families may feel distrustful of the health care team when what appeared to be conflicting information was provided by the team or when nurses’ communication was guarded.

When you haven’t been given the info and you don’t know what’s going on with the patient, it’s not a team approach; it makes it very difficult. I had no idea that he was just given bad news and I went in and my approach was inappropriate for the situation. I think if I hadn’t built a relationship with the patient, he would have thought “Here’s a team of people that don’t communicate” and that could destroy his trust in us. (Nurse #20, Staff Nurse, Oncology Practice)

Importantly, the failure of a physician to provide full information to patients made it challenging for nurses to navigate patients’ prognostic questions and statements.

One of our doctors has a hard time being upfront with the patient and telling them what their status is. Then the patient said to me, “Well I’m not terminal or anything am I?,” and I am thinking, “Of course you are…you have lung cancer.” It’s a hard thing when the doctor hasn’t told the patient what is going on with them. So sometimes I’ll just say to the doctor, “Can you please tell them because they don’t have a clue that things are not going well here.” (Nurse #28, Staff Nurse, Oncology Hospital-Based Practice)

When nurses felt that patients had not been given full information about their prognosis, they used a number of different strategies to address patient questions and education needs, such as being present during the physician’s conversation with the patient or checking with the physician prior to their encounter with the patient.

So when the [physician] didn’t address life expectancy with him and then he asked me those questions, I tried to answer to the best of my ability. But my area of expertise is not prognosis. So I felt like it created tension between me and the patient because they want accurate information and I could only provide some of it. So if possible, I will try to be present during the visit with the physician and the patient. (Nurse #20, Staff Nurse, Oncology Practice)

Communicating information from patients back to physicians was another way in which nurses reported playing a role in supporting information needs and communicating how the health care team works together:

We’re very direct and honest with one another [nurse and physician] and our interaction in front of the patient is to make them feel like they are family and we work really well together. We create an environment that is not intimidating for them and they are comfortable asking us if they need more information. (Nurse #19, Staff Nurse, Oncology Practice)

For some, the team role was difficult and challenging. One nurse reported worrying about offending her physician colleague when raising issues about communication with patients.

Sometimes I have to go gently into the [physician’s] office and say ‘This is what is going on with the patient and have you two talked about this?” You know we aren’t going to point fingers at anyone, but you just have to say, “Listen...this is what he’s feeling and you need to have a conversation with the patient.” But you have to approach the doctor in a way that they’re not offended. (Nurse #23, Staff Nurse, Pulmonary Practice)

Nurses continue discussions after delivery of bad news

Nurses discussed how they reinforced or provided additional information to patients and family members about treatments or their disease processes after the physician provided the diagnosis or prognosis. Sometimes they felt they were “picking up” where the physician left off in the bad news discussion and found themselves supporting the patient’s hope.

I consider my job to reinforce and give the patient information in a way that leaves them with hope. Like providing them with resources to help them cope. I can’t tell them how to respond to the bad news, there is no right or wrong way. (Nurse #15, Staff Nurse, Medicine Clinic)

Nurses’ Scope of Practice

Most registered nurses in this study said that it was not their role to initiate a discussion of advance directives, provide prognosis, or deliver bad news. Exceptions were nurses who practiced in oncology or palliative care. Nurses in these settings reported that they pushed the boundaries of traditional nursing practice by discussing prognosis and delivering bad news.

I give bad news but it’s different than the doctor’s bad news. My bad news is more about day-to-day fluctuations in symptoms or management of complications. The doctor’s bad news is “the cancer is back.” (Nurse #21, Staff Nurse, Hospital Oncology Unit)

Nurses in advanced practice roles also reported routinely discussing prognosis, bad news, and advance directives in their practices. However, they stated that they framed these conversations around quality of life issues rather than focusing on survival statistics.

When I talk about advance directives, I start off by asking them “What else do you want to accomplish in your life?” (Nurse 26, Clinical Nurse Specialist, Palliative Care)

Discussion

This study explored nurses’ perspectives on their roles in meeting patients’ and their families’ needs for hope and truthful illness information, focusing on patients with severe COPD or advanced cancer. One important and challenging finding from these analyses is that nurses feel that they must often rely on cooperation, collaboration and negotiation with their physician colleagues in order to meet patients’ and families’ information needs. Since most end-of-life care is delivered by interdisciplinary teams, this finding suggests future interventions should promote effective interdisciplinary communication concerning prognosis and end-of-life care. Studies have shown that patients and families view interdisciplinary communication as a key aspect of good end-of-life care (25, 34).

Despite several studies documenting the importance of interdisciplinary communication, few effective approaches to develop these skills have been identified. One study examined the effect of a multidisciplinary intervention in which a nurse practitioner was included in the inpatient medical team and daily multidisciplinary rounds were instituted (35). Physicians reported greater collaboration with both staff nurses and the nurse practitioners. However, staff nurses reported no differences in levels of communication and collaboration with physicians. This negative finding for staff nurses may reflect different perceptions between nurses and physicians for what constitutes effective communication and suggests that a shared view of effective communication may be important for future interventions. This finding was confirmed by a study that tested the effects of implementing a standardized framework aimed to improve communication among the diverse professionals working in palliative care (18). Physicians preferred informal ad hoc dialogue and nurses valued formal meetings. The nurses explained that meeting the needs of their patients was often contingent upon receiving information from physicians and participation in formalized interdisciplinary meetings facilitated information sharing.

In our study, nurses identified the challenges of supporting patients’ and families’ informational needs when physicians have not fully disclosed information about the patient’s disease status or prognosis. Withholding or not disclosing prognostic information to patients with limited life expectancy has been well documented. Some of the reasons for these behaviors include: lack of communication training, lack of time to attend to the patient’s emotional needs, fear of a negative impact on the patient, and uncertainty about prognostication (12, 36). Regardless of the reasons, physicians’ withholding of information from patients may place nurses in challenging situations of not wanting to overstep professional boundaries by providing information or by contradicting the physician, yet needing to answer patients’ legitimate care-related questions. Nurses in our study identified negotiating these situations as a challenging aspect of their jobs. Prior studies have demonstrated that prognostic discussions conducted by expert, collaborative teams enhanced patients’ feeling of hope (37, 38). These findings highlight the importance of new approaches to interdisciplinary communication (39).

A second key finding that may help guide future interventions is that nurses perceived that they offer patients with terminal and life-limiting illnesses, specifically severe COPD or advanced cancer, a unique and independent source of support for hope. This finding is not surprising given the nursing profession’s focus on caring as a defined therapeutic approach, including offering emotional support and hope to patients and their families (40). Hope plays an important role in the lives of dying patients, their families and nurses (4, 41–44) and can range from hoping for a miracle to hoping for a good death (14). Hope-fostering and hope-hindering clinician behaviors have been previously described (21) and our findings confirm the importance of patients’ and families’ needs for hope and nurses’ roles in supporting that hope. These findings confirm that, in complement (14) to their physician colleagues, nurses provide this support by individualizing care, responding to quality of life issues, and developing trusting relationships with patients and families. This role could be supported in future interdisciplinary interventions to improve communication about end-of-life care.

A third important finding that may also help guide future interventions was the apparent influence of the nurses’ work setting, advanced training, and attitudes towards professional scope of practice on nurses’ provision of prognostic information to patients. Nurses in our study described the roles they believed were within their scope of practice and the roles that pushed the boundaries of their practice. As would be expected, nurses in advanced practice roles (nurse practitioner and clinical nurse specialist) described delivering bad news and providing prognostic information as within their normal clinical practice. However, registered nurses who did not have advanced training but who practiced in oncology settings and palliative care practice also reported delivering bad news and discussing prognostic information. The registered nurses in our study reported that their roles were limited to supporting the information about illness and prognosis that has been provided to patients by physicians or to providing more limited bad news, such as discussing implications of the prognosis for activities of daily living. Our findings suggest that nurses in advanced practice roles and staff nurses practicing in specialized settings need communication skills training, similar to their physician colleagues, to be able to meet the diverse needs of patients with life-limiting illnesses and their families. Development of these skills in an interdisciplinary setting may improve patient-clinician communication by the health care team.

This study has several limitations. First, as is common with qualitative studies, we did not intend to assess the prevalence of the identified themes. Rather, the goal was to describe with breadth and depth how nurses view these questions. Future quantitative studies will need to address whether the roles described above are equally characteristic of larger and more generalizable samples. Second, the quotes and examples provided contributed to our development of nursing role conceptualizations and are included here to illustrate that development. They are not intended as guidelines or examples of best communication practices. Rather, they are designed to characterize current perceptions and approaches and may, in some cases, suggest opportunities for improvement and change. Third, the sample included a mix of staff nurses, clinical nurse specialists and nurse practitioners which likely affected the responses. However, the mixed sample also helped to clarify the range of roles and the boundaries of registered versus advanced practice nursing roles. Finally, we identified nurses caring for patients with two specific diseases: advanced cancer and severe COPD. Prior studies have suggested some differences in patients’ perspectives about the importance of hope between these two diseases (26). We did not identify differences between these diseases in the current study, but this study was not designed or powered to detect such differences.

We have described how nurses support patients’ hopes while providing or supporting prognostic information for two life-limiting diseases, severe COPD and advanced cancer. The findings highlight that nurses’ current practice involves supporting patients’ hope by finding out what hope means to each individual patient, focusing on quality of life needs and building trusting relationships with patients and families. These activities are ones that our sample reported as being able to complete independently. By contrast, nurses emphasized the need to work with physicians to provide or support the provision of prognostic information for patients. Our findings may be used to inform future interventions and highlight the need to improve interdisciplinary team communication to be able to accomplish both these important tasks—support for patient’s hopes and the provision of accurate prognostic information. Nurses, like physicians, need communication skills training in order to improve their ability to effectively work with patients with life-limiting illnesses (45, 46). This training may be most effective if done with interdisciplinary teams where physicians, nurses and other members of the health care team have the opportunity to explore innovative strategies to address current gaps in communication. Patients with life-limiting illnesses and their families need and want consistent, honest and compassionate information and may suffer when clinicians’ communication occurs in silos (39, 47). These findings highlight the potential for coordinated and collaborative interdisciplinary approaches to supporting the end-of-life needs of patients and families and provide insights for development of interventions to improve end-of-life care.