Transition to comfort-focused care: Moral agency of acute care nurses

Abstract

Background:

Moving into the last phase of life comprises a developmental transition with specific needs and risks. Facilitating transitions is an important component of the work of nurses. When curative interventions are no longer helpful, nurses enact key roles in caring for patients and families.

Aim:

The aim of this study was to examine the experiences of registered nurses in acute care settings as they worked with patients and families to facilitate transition to comfort-focused care.

Research design:

Sampling, data collection, and data analysis were guided by constructivist grounded theory, chosen because of its strength in identifying and explicating social processes.

Participants and context:

A purposeful sample of 26 registered nurses working in acute care hospitals in one community in the northeastern United States participated in this study through semi-structured interviews.

Ethical considerations:

The study received approval from the university’s Institutional Review Board for the Protection of Human Subjects. Participants provided informed consent.

Findings:

Nurses facilitated transition to comfort-focused care by enacting their moral commitments to patients and families. They focused on building relationships, honoring patient self-determination, and maintaining respect for personhood. In this context, they discerned a need for transition, opened a discussion, and used diverse strategies to facilitate achieving consensus on the part of patients, family members, and care providers. Regardless of how the process unfolded, nurses offered support throughout.

Discussion:

Achievement of consensus by all stakeholders is critical in the transition to comfort-focused care. This study deepens our understanding of how nurses as moral agents utilize specific strategies to assist progress toward consensus. It also offers an example of recognizing the moral agency of nurses through listening to their voices.

Conclusion:

Increased understanding of effective nursing strategies for facilitating transition to comfort-focused care is essential for developing needed evidence for excellent care and strengthening end-of-life nursing education.

Keywords

Clinical ethics comfort-focused care empirical approaches end-of-life issues grounded theory method palliative care qualitative research

Introduction

Although nearly a third of natural deaths in the United States occur in acute hospital settings,¹ quality of care and quality of dying continue to be suboptimal.^2

–6 Among the shortcomings in hospital-based end-of-life (EOL) care are inadequate management of physical and emotional symptoms and failure to adequately involve patient and family in decision making^3,6; prolonged delivery of ineffective and burdensome interventions^4
–6; and failure to honor patient preferences for care, often despite the availability of advance directive documents specifying those preferences.^5,6

Recognizing that one is moving into the last phase of life presents a developmental transition with specific needs, risks, and opportunities.^7,8 For hospitalized patients, this transition is signaled by a change in plan of care from cure-focused to comfort-focused care, which is limited to interventions that are supportive and palliative. Although palliative care can co-occur with curative care, when the care plan is exclusively palliative, medications and other interventions are chosen based only on their contribution to symptom management and overall comfort, rather than having a life-prolonging intention. Overly aggressive cure-focused care pursued for too long in the illness trajectory^4,6 comprises a failure of timely transition to comfort-focused care and a default to ongoing curative care past the time when it can promote meaningful improvement for the patient and/or when the patient finds the burden of care worthwhile.⁴

In addition to increasing patient suffering, delayed transition and associated EOL care inadequacies can result in bad deaths that have enduring adverse effects for bereaved family members.^5,6,9
–11 Furthermore, given the complexity of EOL care in hospital settings and the high incidence of suffering, difficulties during this transition process put nurses at higher risk of moral distress.¹² Lusignani et al.¹³ found that among hospital nurses, many of the most morally distressing clinical situations involved care of dying patients and included providing what the nurse believed was care that increased suffering without benefit to the patient.

As the always-present clinicians, nurses are central to the provision of EOL care in hospital settings.^14
–16 Because facilitating transitions is an important component of the work of nurses,¹⁷ they enact key roles in caring for patients and families during the transition from cure-focused to comfort-focused care when curative interventions are no longer helpful. Care includes diverse forms of advocating,¹⁶ providing and interpreting information,⁸ and facilitating substituted judgment by surrogate decision makers.¹⁴

A recent metasynthesis provides preliminary modeling of the transition process as engaged by patients and describes some of their related needs.⁸ Well-timed transition to comfort-focused care is dependent on patient, involved family, and care providers coming to a shared recognition that recovery is highly improbable, and agreement on the value and appropriateness of comfort-focused care.⁸ While, as noted above, there is evidence describing various nursing roles, there is limited evidence explaining the transition process as a whole from the perspective of nurses themselves. Understanding the specific challenges encountered and strategies that nurses found effective can provide insight and guidance for new nurses and their educators, as well as greater understanding of the nursing role for other clinicians.

Aim

The aim of this study was to examine the experiences of registered nurses (RNs) in acute care settings as they worked with patients and families to facilitate transition to comfort-focused care.

Design

This research was guided by constructivist grounded theory method,¹⁸ chosen because of its strength in identifying and explicating social processes. We sought to understand theoretically how nurses in acute care settings interacted with patients and their family members during the transition to EOL.

Participants, procedure, and data collection

A purposeful sample of RNs working in multiple acute care hospitals in one community in the northeastern United States was recruited via two School of Nursing listservs that reached RNs in clinical practice. In addition, network sampling was used to identify additional participants among their coworkers. Participants met these inclusion criteria: minimum of 1 year as a staff nurse in a hospital in-patient setting and experienced in caring for patients whose care plan transitioned to comfort measures only. Nurses working in intensive care settings were excluded since transition to comfort-focused care in that setting commonly involves withdrawal of life-sustaining treatment at the very end of life, a phenomenon that has been studied frequently and that we believe differs as a social process.

Twenty-six RNs, of whom 70% worked full-time, participated in this study. They ranged in age from 23 to 54 years, with mean age of 31.2. They reported practicing as RNs for 1–24 years, with mean of 4.7 years. Caucasians comprised 84.6% of the sample. Individual semi-structured, audio-recorded interviews were completed with each participant; professionally transcribed verbatim; and verified by the researchers prior to analysis. The researchers are two female nurses experienced in providing EOL care, enhancing theoretical sensitivity.¹⁸ Both have experience and training in grounded theory methods at the PhD level. The relationship with each participant began when interest in the study was expressed by telephone or email. At that time, additional information about the purpose and procedures of the study was provided, questions answered, and an interview scheduled. No one expressing interest subsequently declined to participate. One-time interviews averaged 1 h in length, with 22 completed face-to-face and 4 completed by telephone at the request of the participant. In-person interviews were conducted in a quiet private location, such as the researcher’s office, chosen by the participant. An interview guide was used; open-ended questions focused on the nurses’ experiences in caring for patients designated for comfort-focused care, their interactions with patients’ families, comfort-focused care decision making, and variations in practice. Using probes and prompts elicited specific examples and rich descriptions of the nurses’ experiences. Demographic data were collected following the interview. Supermarket gift cards ($25) were given as honoraria.

Data analysis

Transcripts were analyzed using constant comparative methods.¹⁸ Data collection and analysis occurred iteratively. To begin analysis, the transcript was verified by listening to the recording. Then the transcript was examined line by line, and codes were assigned to identify conceptually what was happening in the data. As coding progressed, memos, lists, and diagrams were used to build and characterize categories. Throughout the analytic process, we constantly compared codes, sub-categories, and categories to understand their relationships. We regularly returned to the data to validate or refine our coding and categorization. See Tables 1 and 2. Atlas.ti 7.5 software¹⁹ was used to assist with data management. Later in the analysis, theoretical sampling¹⁸ was employed. For example, many nurses commented about the importance of honesty to their relationships with patients, and sampling theoretically for a variety of specific experiences helped provide a fuller understanding of how participants enacted that value. Similarly, we identified and explored conceptual variability in nursing practice related to having EOL discussions. Toward the end of each interview, we asked nurses how their practice in caring for dying patients differed from that of coworkers. For those participants who perceived a difference, descriptions of their observations further illuminated their own values and practices.

Table 1.

Coding example.

Quotation	As nurses, I feel as though we have this gut feeling that it’s not right; he’s not going to come back, which is what we all felt.	The fact that the treatment’s not working and they’re getting worse. The kidneys are starting to shut down, the liver’s starting to shut down, there’s no quality of life.
Code	Using intuition	Burden greater than benefit
Sub-category	Identifying dying
Category	Perceiving the need

Table 2.

Categories, sub-categories, and codes.

Category	Sub-categories	Codes
Relationship-based caring	Being honest	Using sensitivity Sharing difficult information Choosing self-disclosure (or not)
	Respect for personhood	Learning patient’s pastIndividualizing carePersonalizing environmentRemembering dignity
	Primacy of autonomy	Keeping patient autonomy primaryHonoring wishesFollowing advance directives
Perceiving the need	Identifying dying	Burden greater than benefitUsing intuitionNo quality of lifeFalse hopeUnrelieved sufferingWaiting too long
	Observing family dynamics	Open/closed awarenessPatient compliant (to family or physician)Lack of acceptanceLack of understandingBeing a fighterBeing in denialGrieving
Opening a discussion	Establishing rapport	Expressing caring interestTaking timeResponding to questionsMeeting voiced needs
	Discerning an opening	Responding to cuesExploring gentlyValidating perceptions (nurse’s)Judging receptivity
	Creating an opening	Initiating conversationAsking general questionsRaising issue with physicianChoosing receptive family memberPersisting/revisitingAllowing timeExploring concerns
Facilitating consensus	Whole picture	Concerns beyond fixing/curingEncouraging observationPrompting empathy with patientViewing holisticallyQuestioning physicians
	Contextualizing	Providing informationDrawing connectionsMaking data meaningfulFraming informationInterpreting observations
	Coaching	Facilitating substituted judgmentPrioritizing patient wishesEncouraging assertivenessPromoting self-trustPromoting focus on patientPrompting communication with physicianHelping patient plan ahead
	Mediating	Being present for meetingsClarifying communicationsRemaining neutralVoicing patient needsInvolving teamIntercedingFacilitating careful listening
Supporting	Providing excellent physical care	Symptom managementHygienePhysical comfortEstablishing calm environment
	Providing emotional support	Being availableMaking space for griefRecognizing unique needsEmpathizingExpressing compassionProviding presenceReassuringMeeting information needsEncouraging family to trust their decisions

Rigor was enhanced by prolonged immersion in the data.¹⁸ To ensure dependability, memos documented the researchers’ thought processes around emerging categories and relationships, analytic reflections, and methodological decisions.²⁰ To reinforce credibility, ongoing research meetings with both researchers occurred until consensus was reached in the analysis.²¹ Memos and regular analytic discussions also served reflexivity²² by addressing personal positions and responses to the data. Credibility and reflexivity were enhanced by intermittent discussions of evolving analysis with a multi-disciplinary EOL research team that included members from nursing, social work, and communication science, and whose diversity of perspectives could help illuminate any implicit assumptions. Consolidated criteria for reporting qualitative research (COREQ) criteria have been followed.

Critical to grounded theory is the sampling of sufficient incidences of the phenomenon being studied to reach informational redundancy and theoretical saturation of categories.²³ Therefore, participants were invited to narrate multiple specific instances of their experiences with patients designated for comfort-focused care. Interviewing concluded when data analysis no longer generated new conceptual information. Transcripts were not returned to the participants for feedback.

Ethical considerations

Institutional review board approval was secured from the researchers’ university (protocol MOD00000771). Participants provided informed consent. Data were de-identified, and recordings destroyed following verification.

Findings

All participants described a multi-faceted process of assisting patients and families during transition to the end of the patient’s life. How they provided care was explicitly grounded in their ethical commitments as nurses. See Figure 1.

Figure 1.

Caring during transition to end of life.

Relationship-based care

Throughout their narratives, nurses emphasized that their relationships with patient and family were foundational to facilitating a transition to comfort-focused care. A close and trusting relationship formed the ethical foundation upon which strategies to facilitate transition were enacted. They reported that “you can really build that relationship” (N13) and “we just have a click with some, so it’s always the ones [nurses] they grow close to that they rely on the truth from” (N08). Within their provision of relationally based care, nurses were guided by the moral principles of honesty, patient autonomy, and respect for personhood.

Honesty

All participants emphasized the importance of rigorous, though sensitive, honesty when responding to questions about patient status or supporting family members in decision making. This nurse acknowledged the simultaneous importance of honesty and sensitivity:

I try to do it, you know, very gently, say things like, “It’s a very high risk surgery,” and a lot of times I’ll say, “I haven’t seen patients who were in your loved one’s state—I haven’t seen them improve very often,” things like that. (N26)

Some differentiated honest answers about the patient’s status from honesty in sharing a personal viewpoint. There was considerable variability in what participants believed about the value of self-disclosure in the service of supporting patient and family and in how they handled questions about “what they would do” as commonly posed by family members. One nurse reported, “I never tell them what I would do because I think I have my personal beliefs, and like I said, I don’t want to bias them in any way. It’s really got to come from them, not me” (N19).

Others were willing to self-disclose to some extent, though all carefully avoided offering advice that conveyed what they believed another “should” do. This nurse reflected on how sensitive these conversations were:

You’ll get family members or patients that say, “If it was you, what would you do?” or “If it was your mom, what would you do?” and you have to be very careful, because I don’t know what this patient has been through. I don’t know—everybody is so different, and I try to choose my words very carefully. (N11)

One participant noted how her practice had shifted somewhat over time, and that she had become more willing to share with family what values would guide her own decision making: “Usually families find peace when you answer them like a true person instead of just the person that’s taking care of them and sticking with the generic answers” (N17). Opting for a high level of self-disclosure, another nurse said, “I believe in being forthcoming, 100% honest, putting myself in their shoes and saying what I would do in that situation, my situation, and just [provide] support and empathy” (N08).

Primacy of autonomy and respect for personhood

Respect for personhood pervaded nursing strategies to facilitate a transition to comfort-focused care. Expression of this ethical value included emphasis on honoring the patient’s choices as well as protecting the personhood of the patient as much as possible. All participants agreed that the patient’s preference, whether voiced previously or contemporaneously, should determine care. As one nurse stated, “As a nurse—we advocate for the patient and the family, but the patient comes first” (N26).

The nurses actively supported patient autonomy whether or not they agreed with the decision a patient made. Their focus was to make sure the patient clearly understood their options. “I support my patient; whatever my patient chooses, whether I agree with them or not, I’m very focused on it’s not my choice; it’s my patient’s choice. I do everything I can to support that” (N15).

One nurse commented that she found it helpful to learn about the patient’s life and see photos or other artifacts (e.g. paintings they had done) conveying that person’s life, saying “Or they were the head of a company or they were in the military or they had a career, you know what I mean? It just gives them dignity” (N09). Another nurse talked about a transition to comfort care as protecting personhood and sustaining identity:

I feel, if to treat the condition would cause greater suffering,…and if you truly grasp a sense of the person, who they are, and to trying to prolong their life would take away from that, I feel like maybe the last time that they have left should be preserved in trying to keep them who they are,…as much as possible. (N03)

Perceiving the need

The acute care nurses in this study explained how they cared for patients and family members when cure or restoration was unlikely or impossible, medical interventions were becoming burdensome, and a comfort-focused approach to care appeared most appropriate. The nurses were highly consistent in perceiving the need and appropriateness for transition and identifying what factors made transition, in their view, the best path for care.

Nurses synthesized multiple pieces of information as they began to recognize that the patient was likely to die. They observed changes in patients who had been admitted several times. They considered scan reports, blood work, involvement of additional organs, and increase in both physical and emotional symptoms. They saw interventions fail to produce any significant improvement in the patient’s status, and began to experience distress themselves because of their perception that the patient was suffering, but receiving no benefit. Nurses watched as the balance of benefit and burden shifted in a negative direction. Efforts to slow or halt the process of decline seemed only to increase suffering. Some nurses spoke of just knowing or using intuition: “You just know they’re not just right—from experience, and you just know there’s nothing that can be done to help this patient. And you see them deteriorate more and more” (N09).

Nurses were often the team member who first raised the concern that a shift in the approach to care might be warranted. They were more likely than others on the healthcare team, especially physicians, to acknowledge that recovery was becoming less likely.

More often than not, the nurses are the ones that are questioning, “Why are we continuing with all this treatment? The patient is just getting sicker and sicker and sicker. What is the goal? Where are we going with this? What does the patient want?” (N11)

Opening a discussion

When questioned, it was extremely rare for a nurse to report having cared for a patient receiving comfort care that he or she believed should be continuing curative care instead. The reverse of that—a patient the nurse believed would be best served by a comfort-focused approach, but who was continuing active disease-targeted treatment—was universal in the nurses’ narratives. After coming to the belief that a transition in care was potentially in a patient’s best interest, the nurses varied in what they chose to do next. Some watched for an opening and raised the topic with the patient or a family member, while others first raised their concern with the medical providers.

Those nurses who reported that they would open a discussion with a family member often referenced the importance of the relationship and described proceeding gently and tentatively. They emphasized listening and paying careful attention to what the family might be ready to discuss. Some mentioned the role of nursing intuition. Regarding opening a discussion of comfort-focused care, one nurse said,

If you ask—I don’t want to say indirect questions, but if you get the feel like if you ask basic questions like, “How long have you guys been dealing with this?” you can get a feel from the family if they’re approachable. (N17)

Facilitating consensus

Having identified that a particular patient might helpfully consider transition to comfort-focused care, the nurses attempted to mediate diverse and often conflicting needs and views. Transition could not occur until providers, patient, and family reached consensus on the best plan for care. In facilitating consensus, nurses orchestrated a complex pattern of strategies guided by shared moral principles in response to the unique conflicts and barriers that arose in any particular situation. The strategies were guided by the nurse’s perceived responsibility to advocate for patient self-determination and family well-being. These nursing strategies included looking at the whole picture, contextualizing information, coaching, mediating, and supporting.

Considering the whole picture

Nurses worked to help family members and other clinicians consider the whole situation of the patient. They reported that physicians focused, often exclusively, on solving individual medical issues such as an unstable blood pressure. In discussing the frequent need to prompt physicians to look at the whole situation, one nurse reported,

A lot of times—I don’t want to say they’ll sell them a dream, but they’ll tell them, “We can put this central line in and we can give them this medication to raise their blood pressure, and yada, yada, yada” instead of explaining to them, you know, because of their situation, this is why they’re as sick as they are, and even if we do all the curing in the world, we’re never really going to help them at this point. And it’s the nurses that sort of remind the physicians, “Let’s look at the bigger picture here.” (N17)

Similarly, another nurse commented on care she observed on her unit, where focusing on electrolytes or blood gases, for example, could thwart seeing the whole picture, saying,

I think we get so focused on saving lives and making all of our numbers…look good…and it’s like “does the patient want you to do all this to them?” Why are we doing a blood gas on this patient? We chase a lot of numbers. (N11)

Contextualizing information

Nurses contextualized the medical information family members were receiving from multiple care providers to help family members understand what they were seeing and to move from a binary of living versus dying to a more nuanced understanding that “living” could have many gradations. Often a patient or family member was unrealistic about what was possible in the current circumstances and what range of choice was actually available to them. Nurses assisted patient/family to grasp the meaning of health changes and possible interventions, offering a big picture understanding, and helping them gradually come to recognize that the patient was approaching the end of life.

Coaching

When the patient wanted comfort care and the family was encouraging them to continue treatment, one of the nursing strategies was to coach empathy. Nurses endeavored to help the family member understand what the patient was experiencing and to shift their focus from their own needs to understanding what the patient wanted. When surrogate decisions were required, nurses coached the surrogate to utilize substituted judgment as their ethical guide.

Nurses also coached patient or family member, as needed, to be clear and direct in communicating their choices to physicians. Patients were sometimes afraid to tell the physician that they wanted to stop active treatment but would share honestly with the nurse. When this happened, the nurse would coach the patient to be honest with the physicians:

If you have a patient who keeps telling you that they don’t want to keep going, and you tell the doctors, and a lot of times the doctors say, “Well, they don’t say that to us.”

And we tell the patient, “You need to tell the doctors. You need to tell the doctors.” (N06)

Mediating

In situations of conflict or difficult discussions, nurses intervened to promote reconciliation of differing perspectives. Closely related to coaching a family member to understand the experience of the patient, at times the nurse facilitated discussion of divergent views between patient and family. In this example, a nurse helped a family member to really listen to the patient, who wanted to go home with hospice care and relinquish treatment:

She [the niece and proxy] just couldn’t understand, and I think that sometimes they were just talking at each other,…and not really listening. I was able to just say, “Stop, stop and listen,” and I think that just having that person there to kind of facilitate and say, “You know, stop and just absorb what they’re saying right now.” I would kind of listen and I would ask questions for clarification too, to kind of facilitate making sure the understanding was there on both sides. (N15)

In another example, the patient was uncertain how to talk with his family about his wishes, so the nurse offered to facilitate the conversation, saying, “ ‘Well, if they’re going to be in today, how about if we all talk about it together?’ and following up when they come in” (N13).

Similarly, nurses sometimes helped mediate discussion between family and physicians. “Listen to what the doctors tell you. If you feel like they’re not telling you enough, express that to me. I can sit in there with you…and we can broaden this conversation” (N20).

Supporting

Throughout their care for patients and families during advanced illness and EOL decision making, nurses offered emotional support. Supporting included practices of listening; responding to questions; providing presence or, conversely, protecting privacy for those who did not want a clinician present except briefly; and conducting all interactions with compassion.

The focus is obviously more on helping the family and the patient cope and come to terms with accepting that this is going to happen, it’s imminent. You have to help them emotionally…I feel like nurses really step in, and that’s how we care for the patients. (N03)

Many of the participants spoke about the importance of supporting family members during and following decision making for comfort care. They acknowledged the difficulty of such a decision and the inevitable uncertainty in many situations:

They need reassurance I think is the big thing. It is such a huge decision that I think families struggle with. There’s no good response; there’s no good answer. I think a lot of times there’s always going to be regret either way. (N26)

Following a transition to comfort-focused care, continuing to support the family became the major focus of care. One nurse talked about supporting family to stay firm in their decision rather than second-guessing themselves. “You let them make their decision and stand by them because that’s not an easy decision to make by any means” (N20). Nurses indirectly supported family by continuing to provide excellent care to the patient, “making them feel that you care, truly, about [the patient’s] life and what’s left of their life” (N07) and directly by offering emotional support to the family: “Listen and hear what people have to say and how they’re feeling; just helping people grieve” (N04).

When curative care continued

Not all patients and families with whom nurses endeavored to facilitate a transition to comfort-focused care made that transition. When timely transition was thwarted by conflicting viewpoints and lack of consensus, nurses perceived that avoidable harm was inflicted. When function-supporting and cure-focused care continued in a patient for whom such care was futile, nurses perceived that patients suffered a great deal and unnecessarily. One described her distress as she recalled a particular patient:

I just don’t feel okay taking care of him anymore; I don’t feel okay about it. When I go home, I feel like a terrible person, and this is my job. I feel like I have a duty to him, like to advocate for him to make sure that he gets—he has written down three pages of directives. I feel like I have a duty to make sure that these are taken care of. (N10)

When seemingly useless curative care continued, nurses recognized not only the harm of continued suffering but also the harm of a patient having no chance to prepare for death or to have the death he or she preferred. As one nurse commented on pursuing curative care for too long, “it’s too late to go home and see their dog again, it’s too late to go home and see their house again; everything is too late” (N08).

Discussion

Although caring for dying patients in the acute care setting is emotionally intense, complex, and challenging, nurses in this study endeavored to enact their moral commitments to promote the well-being of patients and families during transition to comfort-focused care, as evidenced by their focus on building a trusting relationship, honoring patient self-determination, maintaining respect for personhood, and providing ongoing support. Findings from this study are congruent with the multi-perspective understanding of the process of transition from cure-focused to comfort-focused care, during which achievement of consensus is a critical juncture that all stakeholders must navigate for the process to move forward.⁸ Our findings advance understanding of this process by adding more detailed evidence of the nursing role.

Leading to our sub-category of identifying dying, participants reported that it was usually nurses who began to wonder about the direction of care for a particular patient. Given the emphasis of nurses on respect for personhood and caring for a person holistically, in contrast to a focus on treating disease and dysfunction, nurses sooner than others acknowledged that it was time to include dying in the scope of possible outcomes.^24,25 Thus, they were likely to include it in the scope of their own considerations and eventually in the scope of conversations with patients and families through opening a discussion. Practices consistent with our categories of being honest, identifying dying, and opening a discussion have also been described for intensive care unit nurses working with patients during transition to EOL.²⁶ While this agreement validates shared nursing practices for patients at EOL, acute care nurses who are not working in intensive care are likely to have greater opportunity to open a discussion earlier in the illness trajectory while the patient has capacity to make self-chosen decisions, giving the nurse greater opportunity to understand and honor patient wishes.

Nurses in our study demonstrated specific strategies to facilitate consensus, including considering the whole picture and encouraging others to do so as well, contextualizing information, coaching, and mediating. Although many of the strategies reported by our participants could be conceptualized broadly as advocating, we deliberately chose to avoid such an inclusive term and instead pursue a more detailed understanding of strategies employed in facilitating a transition to comfort care. While advocacy is an expected nursing role²⁷ and as such has been studied conceptually,²⁸ philosophically,²⁹ and empirically,³⁰ we believe revealing a finer-grained understanding of what nurses were actually doing in diverse instances of advocating can underpin more meaningful education in interactional and communication skills for nursing practice.

Moral agency

While we did not undertake this study oriented by the consideration of moral agency, the nurses’ narratives clearly expressed and illustrated their moral agency in the transition to comfort-focused care. Moral agency comprises the nurse’s ability to recognize, reflect on, and actively respond to moral responsibilities.³¹ It is through their narratives that the moral agency of nurses is most clearly revealed.³² Consistent with our findings on relationship-based caring, moral agency is expressed in particular contexts and through specific relationships^31,33 rather than being exclusively grounded in autonomy and rational decision making. Core to our participants’ stories are careful attention to building and sustaining trusting relationships with patients and family members, as well as an appreciation for the unique contextual aspects of the patient’s situation and his or her personhood.

Because evidence reveals that normative hospital culture includes widespread avoidance of human agency in undertaking proactive goals of care discussions²⁵ and a pervasive practice of exhausting all options to rescue very ill patients,^25,34 the exercise of nurses’ moral agency in supporting EOL decision making and facilitating transition to comfort-focused care, as described by the study participants, is essential.

Implications

Given the centrality of nursing during transition to EOL, it is concerning that nurses continue to report feeling inadequately prepared and to request additional didactic and experiential preparation for this work.^24,35

–38 Indeed, EOL discussions are commonly regarded as difficult conversations.^37,39 Our findings demonstrate the capacity of some acute care nurses to recognize or foster openings and to utilize those openings to move into highly sensitive conversations about dying. They also highlight other specific strategies and communication skills that participants found valuable. These strategies can be taught and role-modeled in basic and continuing nurse education. Having a designated palliative care champion to provide practice mentorship on the unit would further help nurses develop their skills and confidence.³⁸

In one area of communication that we believe needs further research and enhanced education, nurses in this study reported widely varying responses to the common question from family members of, “What would you do if you were in my situation?” Nurses need to be equipped with evidence-based guidance and practice-related knowledge to support them in assessing and responding to questions such as this one, while fulfilling their ethical commitments to those for whom they care. The lasting effects of EOL experiences for family members are too significant for this facet of communication practice to be as variable and person-dependent as reported by our participants. Furthermore, research is needed to identify cultural variation in the process of transition to comfort care and associated communication needs. None of our participants raised this element in their narratives.

Limitations

Our study was limited by the fact that only nurses willing to talk with us about how they care for dying patients volunteered for the study. It is likely that the nurses in our sample had higher interest in, concern for, and comfort with EOL care than those who did not volunteer. Thus, we were unable to attain a fully comprehensive description of care practices during transition. Although limited to one urban/suburban community in the northeast of the United States, the nurses worked at multiple acute care hospitals within that community, providing for a regional rather than institution-specific awareness. Our findings are also limited by our sample being predominantly White women.

Conclusion

Acute care nurses are front-line care providers who are uniquely positioned to perceive the need to initiate a dialogue regarding EOL decision making. As the professionals who likely spend the most time with patient and family, the onus is on nursing to hone these communication skills, operationalize effective strategies, and educate future generations of nurses. It is clear that the moral agency of nurses is quintessential to effective transition to comfort-focused care for dying patients and their families.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this research was provided by the Institute for Person-Centered Care, University at Buffalo, the State University of New York.

ORCID iD

Mary Ann Meeker

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