Oncology Nurses' Narratives About Ethical Dilemmas and Prognosis-Related Communication in Advanced Cancer Patients

Susan M. McLennon, PhD, RN: Margaret Uhrich, BSN, RN, Sue Lasiter, PhD, RN: Amy R. Chamness, BA, Paul R. Helft, MD

Disclosures

Cancer Nurs. 2013;36(2):114-121. 

In This Article

Results

Ethical Dilemmas

The types of ethical dilemmas reported by the oncology nurses fell into 3 main categories: (a) truth telling, (b) conflicting obligations, and (c) futility. Similar concepts were grouped into 4 subcategories and labeled "nurse uncertainty," "physician barriers," "hope," and "informed consent," which were then labeled as a main category truth telling. Concepts related to nurses' perceived responsibilities were grouped into subcategories labeled "family" and "culture," which were then labeled as the main category conflicting obligations. Finally, concepts related to the patients' quality of life were labeled futility. An abstraction diagram (Figure 1) depicts the concepts, subcategories, and main categories derived from the analysis

Figure 1.

Abstraction diagram: Ethical dilemmas

Truth Telling

Nurse Uncertainty

Incomplete information. Many nurses described feeling uncertain about the extent of the prognostic information that had been given to their patients. One participant described this lack of information that she felt inhibited discussions. "I'm not always sure what the doctor has told the patient, and I don't want to confuse the patient." Another nurse explained, "Most of the apprehension…. is based on not having the complete picture…."

Put on the spot. Nurses described feeling uncomfortable when asked by patients to explain their prognosis. One nurse described the following situation, "as a very new oncology nurse, I was instructed by the physician to relay prognostictype information to a patient and his family… I just wasn't stating things as directly and simply as I should have… it was a nightmare for me and the poor patient and his family!" Yet another said that prognostic questions from patients "can be embarrassing when… you pretend not to know the answer.

Taking risks. Barriers to truth telling were described by nurses when they were unsure about the best course of action. "Most of the problems arise because of MD's reluctance to discuss… one is left with very difficult decisions as to exactly what and how much information that can be given without conflicting with MDs and, by extension, the nursing supervisor." Finally, a potential consequence of risk taking was explained by a nurse who wrote, "I reviewed stages of cancer with patient and family and told them the prognosis, which was completely different from the MD. Both family and patient became irate/angry with me and refused to allow me to give chemo.

Physician Barriers

Evasion. Some nurses explained that physicians' avoidance of discussing or clarifying end-of-life issues places the nurse, patients, and families in unnecessarily distressing situations. "I find the doctors do not talk with their patients about end-of-life issues when dying with cancer. Then that puts a burden on the RNs who deal with the patients." Also, "Advanced ovarian cancer reoccurrence…. physician never faced issues head on with patient and husband. DNR status finally obtained… from a covering physician. Family was relieved especially husband." The use of vague terminology was also discussed. For example, a nurse reported, "I have problems with physicians using words like probably aren't going to survive this… they latch on to the word probably." Also, "doctors talk to the patients, but they don't use the word 'dying or near death.' It saddens me when I hear later–'I wish they would have told us sooner.

Optimism. Overly optimistic discussions may set the stage for unrealistic expectations and make prognosis-related discussions difficult for nurses, "It's difficult if the MD still paints a rosy picture," wrote 1 nurse. Another stated, "physicians almost always overestimate life expectancy when asked, even if the death is close within weeks to days."

Hope

Taking away hope. Concerns with taking away hope from patients may also limit healthcare providers' willingness to disclose life-limiting illness information. One nurse wrote, "I don't like to diminish hope," and another explained feelings about a particular type of patient that "conflict occurs when [the] patient is young adult and has a strong denial regarding end of life…. concern with 'taking away hope,' 'causing psychological pain.' I tend to retreat.

False hope. In addition, there were some situations where nurses thought patients had been given false hope. "I had a patient recently who had no other options… the doctor told me this and then told him, but then also told him that he would check over the weekend to see if he could find anything else, but the doctor knew he wouldn't. So the patient was given false hope over the weekend." The following statement overlapped with the clinical ethical dilemma of nonbeneficial treatment, "when treatment is not going well, sometimes a doctor may collude with a patient's false sense of hope. Sometimes, patients continue treatment when it doesn't seem to be of benefit.

Informed Consent

Capacity. Concerns with patients who do not understand their illness and the associated treatment options also were described by nurses as dilemmas. "The largest problem with this issue is my patients' lack of education––they simply do not have the capacity to understand what is being told to them." Another nurse relayed situations about "patients with dementia that I know do not understand their prognosis."

Disclosure. Another related ethical issue was about situations where patients were not adequately informed. A nurse explained, "I do not believe the patients are given the whole picture of their disease in order to complete the trials they agree to take."

Conflicting Obligations

Family

Withholding information. Nurses described problematic situations in which families did not want the patient to know their prognosis. The nurses described feeling conflicted about the right course of action. For example, a nurse explained that "I will not often initiate conversations about prognosis but feel an obligation to answer questions honestly if the patients ask."

Confidentiality. Nurses reported conflicts when dealing with issues about keeping protected health information confidential when managing their patients and families. For example, a nurse explained situations where "she apparently had not told the family of his prognosis… his father was talking about patient 'getting back to work,' and I didn't therefore feel comfortable (Health Insurance Portability and Accountability Act) sharing that he was terminal, so I had to avoid these questions, which I felt was a disservice to his family.

Patient rights. Several nurses described issues of witnessing the family making decisions that countered the patients' wishes. In 1 case, a nurse described that "several months ago we continued to give daily chemo injections to a woman in her late 80s who was barely coherent. Her daughter did not want to stop treatment. The patient many times asked us to stop and 'let her go."'

Culture

Beliefs. Cultural issues were reported by many of the nurses. For example, some cultures have "learned responsibilities, and they do not believe in hospice as a possible choice…centered toward their families and promotion of life, not necessarily what's best for the patient." Religious beliefs also were of concern for nurses: "I have had experience of feeling ethically conflicted… with Jehovah Witness with diagnosis of any type of acute leukemia," and "when the patient and family…. repeat 'we're going to get the miracle we've been praying for."

Language. Other than differing cultural beliefs, non––Englishspeaking families and patients accounted for nurses' concerns about ethical issues related to end of life. "In my institution, there are significant language barriers with a large percentage of patients. I can provide care… using limited language skills and gestures, and…. translator phone services, I would not feel secure in having a prognosis-related discussion in these circumstances."

Futility

Quality of Life

Overly aggressive treatment. Several nurses commented about advanced cancer patients who received treatments that nurses perceived were reducing quality of life, particularly in older adults. "93 years old… aggressive treatment and blood product support even though they are refractory and doctor tells nursing staff patient has days to weeks to live––but hasn't told patient/family." A nurse relayed this story (that overlaps with the category of patients' rights): "We then find ourselves giving chemo to 95+-year-olds whose family does not want to go against the MDI very challenging for the healthcare providers.

Nonbeneficial treatment. There were also situations where nurses had concerns about treatments that were not beneficial to their patients, particularly older adults. "In the elderly population we treat at my facility, I think that often there would be increased quality of life and longer life expectancy with no treatment than with it."

Prognosis-related Communication

Analyses of the textual data for the second survey question that offered space for additional comments about prognosis related communication from the nurses were coded and then grouped into the subcategories labeled "Who should talk about it?" "Nurses' role," "Nurses' advice," "What do nurses need?" and "Why it is important." The diagram depicted in Figure 2 illustrates the concepts, subcategories, and the main category derived from data analysis.

Figure 2.

Abstraction diagram: Comments. Abbreviation: MD, medical doctor.

Who Should Talk About It?

Physician-nurse teams. Nurses described ways that physician nurse teams functioned together to manage prognostic conversations in their own practices. One nurse described her work experiences this way: "The physician group I work with does an excellent job of speaking to their patients about prognosis. I nearly always go with the physician… because if I know exactly what the doc has said I can more easily answer further questions…. I make it a practice to stay in the room a few minutes longer" (overlaps with nurses' roles). Finally, the benefit of teamwork was summarized by a nurse in this way: "I think if prognostic discussion was more collaborative in my institution, physicians would feel that they have more backup when dealing with patients and families."

Nurse practitioners. All of the nurse practitioners that commented about their role in giving prognostic information expressed having adequate comfort and training for the task. "As an oncology nurse practitioner, I see patients every day who are seeking information about their prognosis. It is within my scope of practice to discuss this with them, and I have the experience and knowledge to do so."

Experienced nurses. Years of working with cancer patients increased comfort levels. "I worked hospice for 10 years, so feel comfortable discussing end-of-life issues." Another nurse stated the value of experience with this comment: "The comfort level is dependent on experience in the oncology field."

Nurses' Role

Advocate. Nurses acted as advocates for patients by independently communicating with physicians about their patients' prognoses and treatment plans. "Most of the times, it is nursing who has to ask, 'Why are we putting the patient through so much if the prognosis is poor?"' Another wrote, "Most oncology nurses are excellent patient advocates, and patients relate/rely on them during all different stages of their treatment."

Facilitate. A number of nurses described the ways that they assisted patients and their families with prognosis-related communication. For example, a nurse said, "I always start asking the patient what he wants…. and have the doctor come in and listen to them, and that helps avoid delays." Another nurse said, "I can inquire with individual patients if this has been discussed or if they would like a discussion with the physician regarding prognostic factors, etc.

Support. They also explained ways they were able to provide support to the physicians and patients by corroborating and clarifying prognostic information. "Nurses are the ones who help the patient process what was said––in small moments during their care." "I have been in the room numerous times when a patient hears their prognosis only to have them say 5 minutes later that the doctor never told them. I think it is all overwhelming and needs to be gone over several times."

Prognosticate. Some nurses felt comfortable discussing prognosis-related information. "Most oncologists are very uncomfortable discussing prognosis––end-of-life issues. That's where I come in."

In contrast, others thought these types of communications were not the nurse's role. For example, "It's not the nurse's responsibility to tell a patient their prognosis. It's the doctor's responsibility," and "I feel discussing prognosis with patients and their families is strictly out of the nursing scope of practice and should always be addressed by the doctor."

Nurses' Advice

Cues from the patient. Nurses described ways that they knew that it was time to begin such discussions, for example, when patients say things like "I'm dying aren't I?" and when asked by patients "How long do you think I have to live?" The nurses also explained the importance of understanding when to have these types of discussions. For example, "I feel it is important for each patient to have the information they need when the person wants the information." One nurse explained that there were circumstances where it was helpful to initiate these types of discussions: "I'm more likely to do this with patients who are clearly progressing––or those failing treatment––so as to nudge them toward acceptance and moving along toward end-of-life planning."

Individualization. A number of nurses responded that, when assisting patients and their families with these types of discussions, there was a need to tailor it to each situation. "Every situation is different and must be evaluated for readiness to know prognosis" and that "while guidelines are appropriate, patients should be assessed individually as to what they need and/or want to know."

What I say. A few nurses offered advice for how to talk about prognosis with patients, "an average life expectancy with this cancer is ____, can be offered." Another advised, "I might say something like, 'Given my experience with other patients in your situationI I'd say weeks-to-months (for example) and likely less than a year."'

What Do Nurses Need?

Working in the dark. Many nurses commented about not knowing enough information to initiate discussions or support their patients with understanding prognoses. "I don't know what they are told. Our patients go to the clinic then come to the infusion center. There is no doc note in the electronic record from that day…. working in the dark regarding prognosis." The nurses' need for physician documentation about the status of prognostic communications was clearly expressed. "I don't think end-of-life discussion is dictated in detail by the doctors. That dictation would help nurses to know where patient concerns are at, and what the patient is already aware of, for our conversations with the patient.

Critical area of education. Nurses thought healthcare providers wanted and needed more education in this area. "This is a critical area of education for the RN. Most RNs and many MDs are not good at breaking bad news." Even among experienced nurses, the need for specific education in this area was suggested by a nurse who wrote, "I work with very experienced BMT (bone marrow transplant) staff who I believe are not adequately educated on addressing prognostic-related questions."

Why It Is Important

It's about the patient. The importance of discussions about disease status and future options was emphasized by a nurse who wrote that "people need to and want to know if they are going to die and how soon." Some nurses thought that prognosis-related discussions did not take place soon enough for patients to benefit from hospice care. "There are too many oncology patients being referred to hospice at the very end. A lot die within days of admission." This statement by a nurse exemplified the benefit for patients, "but at end of life, I would like to say our patients are well informed."

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