Guiding the Process of Dying: The Personal Impact on Nurses

Dianne White, MS, RN; Mary Ann Meeker, DNS, RN, CHPN

Disclosures

Journal of Hospice and Palliative Nursing. 2019;21(5):390-396. 

In This Article

Results

Study participants were female nurses with 1 male nurse, between the ages of 23 and 54 years with an average age of 31 years. Most nurses had been employed for less than 9 years. Eighty-five percent of participants were white, 65% had completed a bachelor's degree, and 58% held certification in specialty areas of nursing. Nurses in the study worked on average 35 hours per week.

Nurses caring for patients as they transitioned toward the end of life described how they were personally affected, what kinds of situations caused distress, where they found support, and how factors to enhance EOL care could benefit patients and their family members. The Figure depicts results of the analysis.

Figure.

Personal impact on nurses.

Sources of Distress

Nurses consistently described sources of distress as they guided the process of dying for patients and their families. Three main sources of distress were reported. The first was moral distress, which occurred when nurses understood what action should be taken, but faced constraints that were beyond their control. The second source of distress involved the complexities of managing analgesia for EOL patients. Finally, the impediments that nurses faced as they "flipped a switch" caring for patients that were cure focused juxtaposed with those that were comfort care focused were another source of distress.

Moral Distress. Moral distress occurred when nurses believed that patient treatment continued beyond the point when a cure was probable and especially feared inflicting unnecessary harm to patients. The nurses lamented the inability to comfort a restless patient and struggled when there was conflict between family members.

Another source of distress came from family members' decisions that failed to honor the patient's wishes. One nurse reported that a patient communicated a desire to die and pleaded with the nurse to stop care, but he would not communicate those wishes to family members, who were urging the patient to fight for life. When participating in decision-making conversations, they attempted to educate the family without bias and tried to be present and supportive without being intrusive.

Nurses felt distressed when they perceived that patients had false hope related to options offered by well-intended physicians. Sometimes this occurred because patient or family misunderstood that interventions being offered were solely palliative, such as radiation for pain management. Other times, patients were being urged to accept curative interventions with little chance of success. Participants reported that some physicians lacked confidence and directness when delivering news of poor prognosis. In those cases, nurses felt distress as the patient and family interpretation of the prognostic conversation was starkly different from the physician's documentation of the event.

The personal impact on nurses heightened when family members pressured nurses to care for patients in a way that conflicted with their professional judgment and moral compass. As one nurse reported regarding a colleague, "She felt as though the family was pressuring her to medicate the patient to the point where she was in tears because she felt like she was being forced to do something that she did not want. It affected her so much that she called in the next day."

Managing Analgesia. For nurses supporting patients and their families at end of life, distress occurred from uncertainty as they administered pain medication for relief of suffering. Nurses strived to achieve the delicate balance of calm, comfort, and as much mental clarity as possible. Variability occurred from nurse to nurse. Some nurses feared hastening death, whereas others discussed unease caused by observing patients who were undermedicated. They relied on patient assessment and response, clinical judgment, and experience to determine dosing. More experienced nurses, confident in their own practice, often expressed frustration and concern when assessing patients who were undermedicated due to nurse inexperience or lack of comfort in administering EOL medication.

"One thing I would say is I'm probably a little bit more generous with increasing the pain medication infusion… than our inexperienced nurses. I'll see them increase by like a ¼ mg an hour, and I'm just like, "What are you doing there?" If they're actively groaning and moaning and flailing their arms, like why are you just increasing by a ¼ mg of morphine? So I'd say… the more experienced nurses, myself included, are more generous with increasing, and I'm not one that's afraid of being the last person to turn that drip up. That doesn't scare me at all; I'm fine with that."

Nurses sometimes felt pressure from family to increase medication contrary to their assessment of patient need. Nurses experienced significant angst when they perceived that the patient's family was pressuring them to give increased doses of medication. In some scenarios, families watched the clock and requested medications even though the patient did not appear to be in any distress. Nurses strived to ease suffering but at the same time did not want to oversedate or speed the dying process.

Care/Cure Dichotomy. Nurses in the study frequently described the internal conflict associated with patient care assignments that required them to move between care that was cure focused to care that was comfort focused. One nurse stated, "They're like open heart—you know, fresh open-heart patients, so it's hard to have somebody on our floor that's had an open-heart surgery a day ago and then also have a patient that is comfort measures only." Several nurses experienced competing demands for their attention. One nurse described the angst she felt when her assigned comfort-care patient died alone while she was participating in a resuscitative code in the next room.

Nurses needed time to establish relationships that facilitated communication and fostered effective EOL decision-making conversations. Several nurses described the need to change gears as they moved between patients. One nurse said, "You have to walk in there and just kind of turn a switch, because you're taking care of patients who are cure based, and then you walk into that room literally right next door, and it's totally different."

Primary sources of distress including moral distress, managing analgesia, and the care/cure dichotomy illustrated the challenges and anguish experienced by newer nurses as well as experienced nurses as they endeavored to provide quality EOL care.

Sources for Support

Nurses in the study described sources of distress that they encountered each day, but also reported the strategies that they used to cope with the work of providing EOL care. Nurses responded to the distress they experienced by accessing sources for support that included self-care tactics and support from colleagues. They recognized the value of effective nurse leaders and acknowledged leadership's role in attending to their key care concerns.

Self-Support Strategies. Nurses recognized the need to understand their own feelings about providing EOL care and appreciated the opportunity to develop meaningful relationships with patients and their families. Equanimity came from knowing that they had done all that they could for the dying patient. Many used self-care strategies such as exercise or journaling to manage stress. They needed to disconnect mentally and emotionally at times to maintain their own stability and sought counseling as needed for additional support. One nurse stated, "At our core, we would crumble if we were completely emotionally tied to that patient. It is hard because sometimes you go home and you are literally shaking because you're exhausted, you're hungry, your emotions are flying high because of what went on in the unit."

Support of Colleagues. Given the emotional toll of providing EOL care, nurses turned to colleagues for support. Nurse-to-nurse support included strategies such as teamwork, debriefing sessions, and reflective conversation. Nurses relied on one another for decision-making consultations related to family engagement, medication administration, and evaluation of patient condition. They frequently conferred to evaluate the need to seek physician support. Together, these nurses often used humor as a coping mechanism.

Nurses described the unique bond that formed among professional colleagues on their units. They drew together as a team at the time of a patient death to manage care of the deceased and care of the family. This esprit de corps eased their burden. Nurses in the study coped with the frequent occurrence of death and relied on debriefing conversation and reflective practice to manage the personal impact.

Participants reflected on their own experiences as new nurses and reported that it was typical to be nervous, even fearful. As new nurses, they often found coping with distressed families to be challenging, and some remembered avoiding these difficult circumstances when possible. The nurses reported the positive influence of strong mentor colleagues that role modeled EOL care and helped them to develop their own professional ways of knowing. With this, they gained confidence and the ability to better advocate for the patient and family. This nurse reported how she, in turn, supported newer nurses. "Usually if I'm there, and I know they have a comfort care patient, I'll try to explain some things to them like the different breathing patterns or changes in the skin or changes in mentation, or even after death, you know, how you wrap the body, and I'll take you to the morgue so it's not scary."

Effective Leaders. Nurses in the study valued effective nurse managers and acknowledged the importance of leadership's role in attending to their sources of distress. They wanted frontline managers to distribute workload in a manner that recognized the time-intensive nature of care required to meet the needs of a dying patient. The nurses appealed to senior administrators to attend to their care concerns, supply an adequate number of nurses, and provide education.

Nurses in the study described the significant contribution and relief found in working with leaders who specialized in EOL care. Strong, experienced palliative care providers (physicians and nurse practitioners) were highly regarded and often reduced nurse burden. One nurse illustrated this regard saying, "The woman who does the palliative care consult is wonderful. She could talk me into comfort care. She is just so reassuring and so wonderful. I love her. As soon as they call her in, you just know that she knows what is in the best interests at that point."

Enhanced EOL Care

Not surprisingly, nurses in this study had clear ideas on what needed to happen to improve the quality of EOL care. They identified the need to strengthen educational and experiential preparation and recognized the value of early EOL decision-making conversation and communication to facilitate the provision of quality EOL care. They also described the unique personal fulfillment that occurred when dying went well for patients and their families and identified factors that increased the likelihood of experiencing this deeply satisfying professional gratification.

Educational and Experiential Preparation. Nurses recognized that there continues to be a significant need for palliative care and EOL educational and experiential preparation for nurses, physicians, and others who deliver care in this setting. Nurses reported that new residents and some physicians were afraid to prescribe adequate doses of opioids, and some struggled to initiate EOL decision-making conversations. Seasoned nurses experienced significant angst when observing the delivery of care they deemed inadequate provided by new, inexperienced clinicians.

Nurses recommended classroom and situational training, as well as the use of strong, highly proficient mentors. One nurse shared, "I had a great mentor, the nurse who precepted me as a new nurse, and he's very passionate about end-of-life care, so he's taught me to start having conversations with people. I like to encourage patients and their families to start having those discussions while the patient can still actively participate."

Study participants recalled that as new nurses they lacked educational preparation, experience, and confidence, yet found themselves in the uncomfortable, sometimes fearful position of providing care to dying patients and their families.

"As a new RN, my first patient was put on comfort care; "What do I need to do here?" I was googling things; "I don't want this to go badly for them or the loved one because I'm new, and the only thing I've done is an online competency about how to take care of someone dying. These are precious moments.' I think there are just so many more things that we could do."

Decision-Making Conversations. Nurses in the study were very clear about factors that strengthened the care experience and made good EOL care more possible. Achieving family consensus was vital to nurses as they guided the processing of dying. One nurse described the benefit of early decision making and the alleviation of burden on family.

"He was still coherent; he still had capacity. I think he was the one who signed the DNR/DNI (do not resuscitate/do not intubate) on the MOLST (Medical Orders for Life-Sustaining Treatment) form. His family was understanding, too, because he was one of those people who had been independent his whole life, and he had that whole pride thing, where he didn't want feeding tubes and he didn't want to be put on a ventilator; so, yeah, from a nursing perspective, knowing that that's what he really wanted, then it felt better, in a way."

Nurse Fulfillment. Nurses recognized the unique satisfaction found in providing EOL care to patients and their families. They viewed it as an honor to advocate for and protect patient wishes and described their involvement as one of the greatest gifts of the profession. Many nurses described the gratification and sense of pride that they achieved while caring well for dying patients and their families. One nurse stated, "In giving you receive; truly, you do when you just take time." Another stated, "This is the most beautiful sacred experience of the human existence."

A nurse in the study described how she felt when a family came back to thank her for advocating for their father and protecting the patient's wishes. She stated,

"Hearing that is like—I feel like it's when an athlete wins an Olympic medal, you know… Being there when they're passing out of this world… making sure they keep their dignity, their loved ones are supported, they're comfortable, and it's not prolonged unnecessarily, I think is one of the greatest gifts that I receive as a nurse, if not THE greatest."

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