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Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study
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Intensive and Critical Care Nursing (2014) xxx, xxx—xxx
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/iccn
ORIGINAL ARTICLE
Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study Richard B. Arbour a,∗, Debra L. Wiegand b a b
In-Patient Liver Transplant Coordinator, Thomas Jefferson University Hospital, Philadelphia, PA, USA University of Maryland School of Nursing, Baltimore, MD, USA
Accepted 16 December 2013
KEYWORDS Palliative care; End-of-life; Nursing roles; Family presence; Patient/family advocacy
∗
Summary Background: Critical care nurses frequently care for dying patients and their families. Little is known about the roles experienced and perceived by bedside nurses as they care for dying patients and their families. Objectives: The purpose of this study was to understand the experiences of critical care nurses and to understand their perceptions of activities and roles that they performed while caring for patients and families during the transition from aggressive life-saving care to palliative and end-of-life care. Methods: A descriptive, phenomenological study was conducted and a purposive sampling strategy was used to recruit 19 critical care nurses with experience caring for dying patients and their families. Individual interviews were conducted and audio-recorded. Coliazzi’s method of data analysis was utilised to inductively determine themes, clusters and categories. Data saturation was achieved and methodological rigour was established. Results: Categories that evolved from the data included educating the family, advocating for the patient, encouraging and supporting family presence, managing symptoms, protecting families and creating positive memories and family support. Participants also identified the importance of teaching and mentoring novice clinicians. Conclusions: The results of this study have important implications for clinical practice, education and research for optimal preparation in providing end-of-life care. © 2014 Elsevier Ltd. All rights reserved.
Corresponding author. Tel.: +1 215 549 1158; mobile: +1 267 243 1470. E-mail address: [email protected] (R.B. Arbour).
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Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Implications for Clinical Practice • • • •
Many nurses may be unprepared for roles they encounter providing care for dying patients and their families. Study benefits include improved education for nurses in caring for dying patients and their families. Education about anticipated roles may better prepare nurses for the demands of patient and family care at end-of-life. Study findings can be incorporated into nursing orientation/preceptorship, undergraduate and graduate nursing education. • Future research should be directed at best practices to mentor, teach and prepare nurses to provide optimal end-oflife care.
Introduction Critical care nurses provide care to dying patients and their families. In critical care units the mortality rate ranges between 6.04% and 14.4% depending on diagnosis (Society of Critical Care Medicine, 2012). One context of care for dying patients and their families is when a patient dies despite aggressive curative care. A second context is caring for dying patients and their families when decisions have been made not to pursue aggressive curative care or resuscitation. This second circumstance applies to most patients who die in critical care units as decisions to withhold and withdraw life-sustaining therapies are made by families and health care teams with patient care transitioning from life-saving to palliative and end-of-life care (Wiegand, 2008). Several factors influence how nurses care for dying patients and their families as well as roles and role expectations during the transition from aggressive curative to palliative and end-of-life care. Nurses may be influenced by prior experiences such as the death of a family member as well as death and dying in the clinical setting. If nurses perceive role confusion during the care of dying patients and their families this increases the degree of stress experienced, limiting effectiveness in providing care and compounding their grief responses (Stayt, 2007). The degree of coping effectiveness in response to imminent and actual patient death may also be affected by role confusion and stress experienced during care of dying patients and their families (Stayt, 2007). Avoidance and compartmentalisation of feelings and grief without expression may lead to cumulative stress, ineffective coping and burnout (Gerow et al., 2010). Nurses have reported that ritualistic caring practices such as ceasing unnecessary monitoring, discontinuing aggressive treatments and making the deceased or dying patient look ‘‘good’’ or ‘‘presentable’’ for the family helps with coping (Shorter and Stayt, 2010). Nurses provide vital care to patients and families at the end-of-life. Researchers have described the important role that critical care nurses perform when they ‘‘plant the seed’’ beginning pivotal discussions regarding goals of care (Fridh et al., 2009; McMillen, 2008; Norton & Bowers, 2001). After nurses plant the seed, important meetings are often held so that discussions can occur with families, advance directives can be discussed and end-of-life decisions can be made (Fridh et al., 2009; McMillen, 2008). Additional vital aspects of family care include ensuring that patients do not suffer, helping relatives feel less uncomfortable and more accepting of the dying process as well as using nursing ‘‘presence’’ so families feel comforted and supported (Fridh
et al., 2009). Critical care nurses have a vital role in facilitating meetings between families and the critical care team. After decisions are made to cease aggressive, curative treatment, critical care nurses play an active role in facilitating the timing of withdrawal of aggressive treatments as well as ensuring that families have time to spend at the patient’s bedside to say good-byes (Fridh et al., 2009; McMillen, 2008). Coordinating optimal timing of treatment withdrawal is important to family members and communicates dignity and compassion (McMillen, 2008). Addressing symptoms of distress, making the environment more comfortable for the patient and family, facilitating a comfortable death and managing one’s own emotional state are important across multiple disciplines (Waldrop and Nyquist, 2011). Although critical care nurses frequently care for patients and their families as care transitions to palliative and endof-life care little is known about how this is experienced by individual nurses with particular regard to the roles they perform. The purpose of this study was to improve understanding of the role perceptions experienced by critical care nurses during transition from aggressive, life-saving care to palliative and end-of-life care. Understanding the roles performed by critical care nurses during these transitions is important in the education, training and orientation of critical care nurses.
Methods This descriptive, phenomenological study sought to answer the question, ‘‘What do critical care nurses experience and what are their perceptions of their roles while caring for patients and their families during the transition from aggressive, life-saving to palliative and end-of-life care. Coliazzi’s methodology (Coliazzi, 1978; Sanders, 2003) for conducting phenomenological research was used to guide the investigation. Following research proposal development and review, the protocol, with supporting documents, recruiting tools, scripted interview questions and demographic questionairre was submitted for approval to the Institutional Review Board of Albert Einstein Medical Center, where this study was conducted. Following IRB approval, participant recruitment and data collection began. One investigator (RA) conducted all interviews. The investigator encouraged study participants to describe the lived experience of caring for dying patients and their families. A broad question was asked initially followed by additional follow-up probing questions to gain further insight into the lived experience to understand each nurses perceptions of their roles. This research reported in
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Self-described nursing roles experienced during care of dying patients and their families this article has been carried out in accordance with The Code of Ethics of the World Medical Association (Declaration of Helsinki).
Sample and setting Study participants were recruited from the medical and surgical critical care units of a tertiary care medical centre. Inclusion criteria consisted of having had the experience of caring for dying patients and their families in the critical care setting including when care transitioned from aggressive to palliative and end-of-life care. A purposive sampling strategy was used to obtain a sample of 19 critical care nurses. The intent of the sampling strategy was to recruit a sample that included a wide spectrum of participant ages, ethnicity and duration of clinical practice.
Recruitment procedures Participant recruitment was accomplished using multiple techniques including advertising in the institutional newsletter for employees of the medical centre, describing the study in critical care shared governance meetings and in unit-based staff meetings, and distributing recruitment notices for study participation through the hospital e-mail system. A final technique that was most effective included directly approaching and asking critical care nurses to be study participants. Upon recruitment, written informed consent was obtained from each study participant.
Study procedures Initial recruiting contacts with study participants took place within the critical care complex of a tertiary care referral centre. Upon agreeing to study participation, the individual nurses met with one of the investigators (RA) in a private office within the critical care complex. Written informed consent was obtained. Each participant completed a demographic data questionnaire. Each interview was guided by an interview guide. The duration of each interview varied with interviews ranging from 20 to 100 minutes. Audiotaped interviews were transcribed verbatim as soon as possible following data collection. Observations were made and field notes including basic descriptions of nonverbal communication from the study participants such as eye contact, posture, tone of voice, speech patterns and emotional responses were recorded. As appropriate, the researcher asked additional questions for follow up.
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feelings were extracted. The meanings of each significant statement were identified and formulated. Emerging commonalities as well as common themes were identified. The themes were referred back for validation to the original transcribed interview. The themes were further analysed and grouped into clusters and then categories. Data collection and data analysis continued until consistent categories emerged. The results were integrated into a description of the phenomenon being studied. Data saturation was achieved and methodological rigour was established. An audit trail was established. Two researchers independently performed data analysis. They met and reviewed the emerging themes, achieving consensus for most of the themes. Differences were discussed and agreement was reached on final themes. Both researchers worked together to determine clusters and categories. Six of the 19 critical care nurses reviewed and confirmed themes extracted from their individual interviews, confirming the credibility of the final summary of the phenomenology.
Results The sample consisted of 19 critical care nurses with a mean age of 35 (range 21—52) years. The majority of the participants were female (n = 17, 89.4%) and the racial and ethnic background was largely Caucasian (non-Hispanic) (n = 14, 73.7%). There was a spectrum of educational backgrounds with 10.5% having an Associate’s degree, 47.4% with a nursing diploma, 36.8% with a BSN and 5.3% Master’s prepared in nursing. Most participants (84.2%) had the experience of transferring a patient from the ICU following withdrawal of life-sustaining treatments. The mean number of years in clinical practice was 9.9 (range 1—25) years and in critical care practice was 7.2 (range 1—25) years. Demographic data for the study participants is summarised in Table 1. Categories that evolved from the data included educating the family, advocating for the patient, encouraging and supporting family presence, managing symptoms, protecting families and creating positive memories and family support. The categories help to understand the experience of the critical care nurses and the roles they use when caring for dying patients and their families. Some of the study participants also described the obligation they felt to teach and mentor new nurses in providing care to dying patients and their families. A general pattern that emerged from the participant’s responses was a higher comfort level with role expression during care of dying patients and their families associated with older clinicians, longer times in practice and additional experiences dealing with death outside of the clinical setting.
Data analysis Educating the family Demographic data were summarised by determining frequencies and percentages. Coliazzi’s (Coliazzi, 1978; Sanders, 2003) method of data analysis was utilised to inductively determine themes, clusters and categories. Atlas.ti computer software was used to organise and manage data (Gerow et al., 2010; Konopasek, 2007) All transcribed interview data were carefully read to develop a ‘‘sense’’ of the lived experience of each participant. Each transcribed interview was again reviewed and significant statements and
The critical care nurses extensively discussed the importance of educating the family. Family education occurred as a normal part of nursing interaction with families and took multiple forms depending on family needs, background, characteristics and emotional state. Family education included what is entailed in withdrawal of mechanical ventilation and vasoactive medications as well as measures ensuring patient spiritual and physical comfort. Family education
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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R.B. Arbour, D.L. Wiegand Table 1
Description of participant demographics.
Demographic characteristics
n (%)
Participants (n) Age (years)
19 35 (mean) 21—52 range
Gender Female Male
17 (89.4%) 2 (10.6%)
Racial/ethnic background Asian or Pacific Islander Black, not of Hispanic origin White, not of Hispanic origin
1 (5.3%) 4 (21%) 14 (73.7%)
Marital status Single/never married Married/living with partner Separated/divorced
7 (36.8%) 9 (47.4%) 3 (15.8%)
Level attained in nursing education Associate’s degree Diploma programme Bachelor of science in nursing Master’s degree
2 9 7 1
Religious affiliation Protestant Catholic Buddhist None Other (Christian)
2 (10.5%) 12 (63.1%) 1 (5.3%) 1 (5.3%) 3 (15.8%)
Have you experienced transferring a patient out of the ICU following withdrawal of aggressive curative treatment? Yes No
16 (84.2%) 3 (15.8%)
Do you have any religious or philosophical views that impact on your nursing care in end-of-life situations? Yes No
8 (42.1%) 11 (57.9%)
Number of years in clinical practice 0—1 2—4 5—10 11—15 16—20 21—25
2 3 7 3 1 3
(10.5%) (15.8%) (36.8%) (15.8%) (5.3%) (15.8%)
Number of years in critical care practice 0—1 2—4 5—10 11—15 16—20 21—25
2 5 7 4 0 1
(10.5%) (26.3%) (36.8%) (21%)
Does your culture have any beliefs or teachings about end-of-life? Yes No
8 (42.1%) 11 (57.9%)
(10.5%) (47.4%) (36.8%) (5.3%)
(5.3%)
was most effective when perceived by family members as sensitive, respectful, patient-specific and empathetic. Teaching often was in response to perceived concerns on the part of the family. In one instance a nurse discussed morphine administration with a patient’s family, ‘‘they were very worried that the morphine would kill him and so they like got nervous when you went in to give him morphine.’’ The nurse understood that the family ‘‘wanted him to be comfortable but didn’t want like a Kevorkian style.’’ The nurse responded by explaining about misconceptions regarding analgesia, that ‘‘The medicine may decrease respiration . . . and lower the blood pressure a little bit but wasn’t what was killing him . . . wasn’t a direct cause of the death.’’ In a second instance, the family expected death to occur and had agreed to extubation. The nurse stated ‘‘. . .They already knew he was going to go, they just didn’t know what time it would be.’’ Here, family education took the form of explaining the dying process ‘‘like comfort issues . . . administering medications’’ as well as what to expect as the moment of death approached.
Advocating for the patient Another important role described was patient advocacy. One example of advocating for a patient included ensuring that appropriate pain medication was given. One participant stated: ‘‘. . .I feel they (the patient) suffered before we really got the doctors to pay attention to comfort issues and order appropriate pain medication . . . once the patient was more comfortable it was so much easier for him and his family.’’ Another example involved a critical care nurse advocating for the patient to document her wishes. The nurse described a patient who ‘‘really needed the power of attorney and an advanced directive before she got worse.’’ The nurse went on to say ‘‘so we got the case manager, social worker and her (the patient’s) person of choice in the room, sat down and talked with her. We got all the paperwork that needed to be done and it went smooth. I felt good about the referral and being able to follow through.’’ Part of the nursing role in patient advocacy was supporting and advocating for patient wishes to be honoured. In a third instance, the patient was twenty-two years old and the nurse felt for the mother and father with her (the patient) having ‘‘her whole life ahead of her.’’ When the parents came in, the patient had already ‘‘coded’’ six times. The father said ‘‘. . .please don’t let her die and there was nothing I could do and I knew. I put my arms around the mother and she said what can I do? I said . . . you’ve got to leave her go and they did.’’ Here, patient advocacy meant helping the family to let go. Patient advocacy also takes the form of truly listening to the patient. One critical care nurse described, ‘‘The patient said: ‘please, no more!’ Once the family understood what that (please no more) meant, I think there was a peace in the room. The whole atmosphere changed from being very tense to actual peace, the patient was put on hospice, he got the pain medication and we did no more. We could see the calm in the whole room, it was pretty amazing.’’ This expression of patient advocacy, helping the family to listen to and understand what the patient’s wishes were helped the
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Self-described nursing roles experienced during care of dying patients and their families family make appropriate decisions, withdrawing aggressive curative care and starting palliative and end-of-life care. This helped the entire patient and family dynamic in coming to terms with impending death. Nurses also described the importance of advocating for good pain management. As one nurse described, ‘‘. . .they (the patient) suffered because a lot of times physicians don’t want to administer pain medication . . . and the patients need more than just the minimum dose. I’ve had physicians order acetaminophen and I’m like, that’s just not going to cut it. I got them to order more appropriate drugs at the right dose and the patient was far more comfortable.’’
Encouraging and supporting family presence The critical care nurses described how important it was for them to encourage and support family presence. One participant felt that the visiting hour restrictions were not helpful and asking the family to leave would have not helped the situation. This was confirmed over the next several hours as the family members began saying: ‘‘Well maybe this isn’t the best thing for mom.’’ Or ‘‘Well maybe this isn’t what she wants.’’ As described by one participant: ‘‘It was like a Lifetime movie . . . all in there . . . and actually caring for the patient, you could almost see them embracing her and embracing the process of death. They knew at that point she’s going to die and she’s accepted it.’’ Encouraging family presence at the end-of-life allowed loved ones to say their final good-byes. One of the critical care nurses stated, ‘‘I felt good that they were going to be OK, you know and I know her husband would be OK because he felt better that she had that lucid period. That she was able to say that she loved him and that made him feel really good. . .. So I felt good that they (both) would be OK.’’ Family presence provided family members with important time to be together. One critical care nurse described, ‘‘Every family member just went around and wanted to say something . . . to tell a story. . .. I think that actually helped a lot with the family. That was a happy moment that was a happy death and dying.’’ Another critical care nurse mentioned, ‘‘. . .that having family presence at end-of-life was an opportunity to help family understand what was happening.’’ She went on to share; ‘‘When they were well aware of what’s happening. . .. I think they are OK with it.’’
Managing symptoms One role was the importance of managing patient symptoms during the dying process. Many participants described a connection between their ability to assist in the patient having what they considered good symptom management (providing a comfortable death) and their respective satisfaction with their individual performance. As described by one participant, ‘‘Once the patient’s decision was made . . . the ventilator was discontinued and the morphine drip was started, he was finally able to get what he and his family wished. In the end, I was happy to be able to see that.’’ Some participants felt that providing and facilitating good symptom management or a good death had a bearing on how they felt after a particular working shift. In other words, making sure that everyone involved concentrated on dong ‘‘the
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right thing.’’ In one instance, ‘‘. . .When we see the patient die comfortably, on their own terms, it’s a more pleasant experience for everybody, for people to watch. That is (good symptom management/comfortable death) what you would want for anyone as a human being.’’
Protecting families and creating positive memories Multiple participants referred to protecting families as ‘‘TLC’’ and going beyond the ‘‘call of duty.’’ The role of protecting families was also articulated as protecting their memories by helping the patient to look as comfortable and clean as possible while minimising technology. One participant shared frustration when faced with transferring a dying patient to a general medical floor bed stating: ‘‘. . .I feel that’s very rude to the family . . . it’s rude to the patient and it’s a disservice to the patient . . . and personally stressful getting rid of that patient to get another crashing patient.’’ In doing this, so much more stress is experienced by the family. Having to transfer a dying patient out quickly under those circumstances ‘‘is . . . one of the crappiest things you can have a family watch, yes, I am passionate about this.’’ Another participant stated, ‘‘Death is supposed to be nice. It’s supposed to be comfortable (for the patient) and comforting (for the family). You want the last thoughts or memories to be nice rather than stressful.’’ Facilitating family involvement to make the patient’s death easier for family members and to help provide positive memories of the experience was common. As stated by one participant, ‘‘. . .If the family wants to see, let them come in . . . if the family wants to hold their hand, let them hold their hand.’’ This gave the family the experience of being these as much as possible, seeing a comfortable and dignified death and being able to say their final good-bye, preserving positive memories for the family as a result.
Family support Family support took the form of providing necessary information, advocating for family members while making health care decisions, providing emotional support, reassurance, acceptance and encouragement. A participant described ‘‘. . .Family members aren’t sure about continuing certain things . . . they need to be helped to understand . . . and the best thing you can do is make them comfortable.’’ This ‘‘making them comfortable’’ while they (family members) are unsure what to do ultimately is a statement of nursing’s role in family support as they move towards acceptance, understanding and making informed end-of-life decisions about someone they love. In supporting the family ‘‘. . .I kind of try to put myself in their position. You have to be tender (and supportive) when people are experiencing things like that.’’ Another participant had a ‘‘feeling’’ that death was imminent and supported the family by continuing caring and a non-judgmental attitude as ‘‘. . .they rescinded the DNR, I put myself in their position . . . what would I do at a time like this if a dying family member rallied and became lucid. It was important to support the family. . .. I didn’t have to agree because it was ultimately their decision.’’ This support kept an ongoing, caring relationship with the family
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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rather then put up barriers to trust and effective communication. Family support and advocacy took the form of seeing that family wishes were honoured by supporting the patient and timing of extubation and withdrawal of vasopressors pending the arrival of other family members. As shared by one clinician, ‘‘. . .it felt actually good when her (the patient’s) daughter made it there . . . and she died, with her daughter. It gave the daughter peace of mind and allowed her to say good-bye. Being able to support family like this also is where I get my peace of mind.’’ Following through on opportunities for family support in a form appropriate to individual family and situational needs was important to study participants and made a difference in satisfaction with family care, support and advocacy.
Mentoring and teaching Mentoring was identified by multiple participants as an important role. Eloquently stated by one participant; ‘‘I would like them to keep in mind anything that they do for this patient that this is someone’s husband, wife, grandmother, grandfather. . ..’’ As for assessing a novice’s level of comfort with a particular assignment; ‘‘A lot of times people have issues at home. They may be caring for a family member who is in hospice. To be pushed to take care of this (a dying patient) may not be the best thing for that graduate nurse, may not be the best assignment. I would want to assess what their level of comfort is.’’ In this context, mentoring is integrated with the practice of caring for a colleague. In a second example, a participant showed sensitivity to the needs of patient and family as well as the novice nurse. She described, ‘‘When you are precepting somebody I think it’s important that they have those experiences so that they can hear dialogue, so they can see what goes on, the chain of events, the course of action. I love it when orientees ask a lot of questions . . . what if type of questions.’’ It definitely needs to be a part of the orientation process. Another participant shared her experience. ‘‘I was fortunate to have her with me as a mentor one night. I had my first patient here who died and she was explaining a lot of that stuff to me, the gurgling, the fluids, like what it all meant. I think (as a part of orientation) it would be a good idea to sit with them (the novice) and talk about death and whether they had experienced death before with family members.’’ The availability of someone to mentor her through that first experience was clearly helpful and appreciated as shared by this participant. Another participant discussed the importance of teaching and mentoring new critical care nurses. She stated; ‘‘It’s important to work with people through the process, to make sure they don’t feel like they are being abandoned. Even guidance on things like creature comforts . . . enough chairs, tissues, water in the room . . . knowing that is very helpful for a new nurse to start with in helping the family.’’
Discussion The role of family support/advocacy may be operationalised by supporting families in decision-making processes,
providing spiritual support, practicing cultural sensitivity and providing emotional support as well as assisting family preparation for death (Kirchhoff and Faas, 2007). This supports findings of Wiegand (2006) who found that families perceived support from healthcare providers when they assisted with appropriate and timely information as well as accommodating stress and grief among family members (Wiegand, 2006). The role of family care encompasses protecting final memories of their loved one. In this context, expressions of caring such as attention to detail in helping the patient ‘‘look good’’ for the family as well as facilitating a more ‘‘homelike’’ atmosphere by playing music, removing all nonessential technology and monitors as clinically appropriate can help provide more positive and comfortable final memories. The role of optimal communication with family as well as healthcare team members will remain integral in caring for families of dying patients (Treece, 2007). The importance of providing a ‘‘good death’’ with effective symptom management and being able to manage the dying event is essential (Shorter and Stayt, 2010). Caring for dying patients and their families is complex. Frequently, patients are admitted to critical care settings with the expectation and goal of receiving, aggressive, curative care. Many patients do not progress towards recovery from acute illness or injury but rather experience continued decline in clinical status, ultimately dying. Patients may die suddenly during efforts to provide aggressive, curative care or over an extended time with family members and health care providers deciding not to pursue aggressive care, rather focusing on comfort, quality of life and effective symptom management. Providing care for dying patients and their families throughout this continuum calls upon the clinician to assume roles including family care/support, advocacy and symptom management as well as participating in shared decision-making among team members, family and the patient (Truog et al., 2001). Nursing is essential in that patients and their families frequently look towards the nurse attending to their loved one to provide honest information regarding what to expect as death approaches. Many study participants’ derived improved personal and professional satisfaction from effective role expression and optimal symptom management. The reverse is also true in that clinicians that feel inadequate role expression including less effective advocacy, symptom management or patient/family education experience negative consequences. These consequences may include increased stress, job dissatisfaction and patient as well as family dissatisfaction with end-of-life care. As such, identifying means to improve care is essential. Data from study participants offers insight into nursing roles experienced while caring for dying patients and their families. Significantly, roles are expressed in multiple forms as the individual clinicians sought not just to provide a comfortable and dignified patient death but also to make the family experience more positive and less stressful. Clinical implications of this study are multiple. One implication is that improving understanding of roles encountered by bedside clinicians can improve care delivery and patient/family satisfaction with end-of-life care. A second implication is that improved care delivery may enhance clinician selfesteem and encourage future initiative with dying patients and their families. In exploring the theme of encouraging
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Self-described nursing roles experienced during care of dying patients and their families and supporting family presence, a nurses’ outcome that she ‘‘felt good and that they both would be OK’’ indicated a positive outcome for the nurse. These positive clinician outcomes can reinforce taking initiative such as encouraging and supporting family presence. Additional positive experiences can result in improved skill during care of dying patients and their families. A third implication is the interrelationship between effective role expression in end-of-life care, effectiveness of patient/family care and job satisfaction. Participants describing experiences in most identified themes articulated positive feelings of job satisfaction associated with effective patient/family care, advocacy and role expression. A significant nursing role explored was that of patient advocacy (McMillen, 2008). Advocacy may involve initiating discussions regarding end-of-life care, facilitating a comfortable and dignified death as well as education and encouraging family presence at end-of-life. Balancing aggressive versus palliative care, information and expectations and intimacy versus distance was central to roles of establishing rapport with patient/family and preparing families for patient death (Boroujeni et al., 2009). Self-care and peer support remain paramount in mutual support, facilitating staff sharing feelings with one another, healthy grief expression and avoiding compartmentalisation of feelings and experiences as well as compassion fatigue (Wilson and Kirshbaum, 2011). The recurring role of patient advocacy takes the form of facilitating communication between physicians and family members as well as reconciling a patient advance directive with plan of care. Expediting family ability to make end-of-life decisions by facilitating communication is reported as a satisfying role expression (Calvin et al., 2007). A finding not previously explored was the concept of mentoring as preparation for novice clinicians to care for dying patients and their families. Participants gave specific ideas on how best to accomplish this, taking into account the developmental stage of the clinician, providing appropriate levels of support and providing a caring, healthy work environment where this takes place. Education and personal/professional development may take the form of more formal educational experiences and include grief and bereavement as well as self-care strategies (Wright, 2011). This may also be facilitated by evidence-based content presented in formal didactic and blended formats including participation of students in ongoing presentation and sharing of content (Kavanaugh et al., 2009). In practice, optimal learning and assimilation of roles encountered and practiced delivering care to dying patients and their families are learned from mentoring and precepting by more experienced colleagues. The roles of mentoring and precepting, while stressful, are integral to teaching, skill development and role expression in nursing students and new nurses in clinical practice (Omansky, 2010). Role development and expression are enhanced by balancing professional boundaries and closeness to patients and families. Relationships between nurse and patient/family can provide family support and actualise this role during the dying process. Close collegial relationships among peers enhance a nurses’ ability to manage grief, loss and other workplace stressors (Zander et al., 2010). Peer support, managing compassion fatigue among team members
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and individually is a significant role expression because it directly affects quality of care. Emotional fatigue and ‘‘burnout’’ can lead to attendance issues and causing individuals to leave specialty areas where they experience exposure to patient death (Aycock and Boyle, 2009). Role of peer support and individual recognition/management of symptoms of distress consequent to providing end-of-life care may help prevent and manage vicarious traumatisation and long-term harm from work-related stress (Sinclair and Hamill, 2007). Additional supporting roles identified include senior clinicians supporting and mentoring novice nurses as they experience caring for a dying patient and family. Patient and family advocacy in care planning with assessment of acuity and accurate, timely information to family members becomes a significant role expression (Calvin et al., 2009).
Study limitations Since one investigator collected all data there was potential researcher bias in data collection. This was addressed by reviewing a sampling of data with the respective study participants to ensure that no significant role identification was missed. A second limitation was the investigator worked in this facility, raising the possibility of less complete responses by participants out of a concern for privacy. This was addressed by careful and thorough discussion during the informed consent process and having an additional data collector available if discomfort was communicated regarding the investigator as data collector. Demographics are an additional possible study limitation. The overwhelming majority of participants were female clinicians and white, limiting generalisability of results.
Study implications Potential study benefits include improved education for nurses in caring for dying patients and their families. Optimising care, responses to patients and their families during end-of-life situations by optimal role delineation and expression can improve patient and family satisfaction. Improved job satisfaction improves stress management among staff, delivery of care and potentially staff retention. Education for nursing professionals about roles encountered when providing care to dying patients and their families may result in better preparation for the demands imposed by palliative care situations where both the patient and family require additional mental, physical, psychological and spiritual resources. Findings from this study can be incorporated into nursing orientation, undergraduate and graduate nursing education. Study findings may also be integrated into preceptorship in which more experienced clinicians, coordinating with advanced practitioners, model behaviours and responses to assist novice clinicians in learning to deal with death and dying. This may result in clinicians being prepared to more effectively care for patients and families during end-of-life situations as well as decreasing staff turnover and institutional loss of investment costs incurred during nursing recruitment and orientation.
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Additional research is needed regarding how best to prepare nurses to care for patients as care transitions from aggressive curative care to palliative and end-of-life care. It is unknown how nurses best learn the knowledge and skills that they need to provide palliative and end-of-life care to patients and families. Future investigations may compare teaching techniques such as classroom discussion, case-based approaches and patient simulation. Nurses can also be followed over time to see how increased palliative care knowledge and experience influence their competencies in the provision of care.
Conclusions Study findings have important implications for clinical practice, education and research. Critical care nurses may be unprepared for roles that they may need to fill in clinical practice when caring for dying patients and their families. Critical care nurses may be unprepared for three reasons. One reason is length of time in practice. Clinicians with limited time in practice may not have as much exposure to caring for dying patients and their families. Lack of this experience may lead to anxiety and possibly reluctance in taking initiative with role expression when faced with end-of-life care. A second reason may be related to clinician age and prior experiences dealing with death of a friend or family member. Younger nurses with little or no prior context dealing with their own feelings associated with death of a loved one may be less prepared for feelings they may encounter during their initial experiences caring for dying patients and their families. A third reason is that teaching death and dying in nursing education programmes is, when provided, more likely to be didactic rather than experienced-based learning. Teaching these roles effectively in nursing education and critical care orientation is essential. Future research should be directed at best practices to mentor, teach and prepare nurses to provide optimal end-of-life care.
Role of the funding source This study was supported by a $2000.00 grant from the Southeastern Pennsylvania Chapter of the American Association of Critical-Care Nurses.. The study sponsor did not have a role in study design, data collection, data analysis, data interpretation in manuscript writing or choice of publication/journal for submission.
Acknowledgements The researchers thank the nursing staff for their support and participation in this study. Release time support for proposal development, revision and data collection/interview of participants was provided by Albert Einstein Medical Center.
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Boroujeni AZ, Mohammadi R, Oskouie SFH, Sandberg J. Iranian nurses’ preparation for loss: finding a balance in end-of-life care. J Clin Nurs 2009;18(6):2329—36. Calvin AO, Kite-Powell DM, Hickey JV. The neuroscience ICU Nurses’ perceptions about end-of-life care. J Neurosci Nurs 2007;39(3):143—50. Calvin AO, Lindy CM, Clingon SL. The cardiovascular intensive care unit nurse’s experience with end-of-life care: a qualitative descriptive study. Intens Crit Care Nurs 2009;25(4):214—20. Coliazzi P. Psychological research as the phenomenologist views it. In: Valle RS, King M, editors. Existential phenomenological alternatives for psychology. New York: Oxford University Press; 1978. p. 48—71. Fridh I, Forsberg A, Bergbom I. Doing one’s utmost: nurses’ descriptions of caring for dying patients in an intensive care unit. Intens Crit Care Nurs 2009;25(5):233—41. Gerow L, Conejo P, Alonzo A, et al. Creating a curtain of protection: nurses’ experiences of grief following patient death. J Nurs Scholarsh 2010;42(2):122—9. Kavanaugh K, Andreoni VA, Wilkie DJ, et al. Developing a blended course on dying, loss and grief. Nurs Educ 2009;34(3):126—31. Kirchhoff KT, Faas AI. Family support at end of life. AACN Adv Crit Care 2007;18(4):426—35. Konopasek Z. Making thinking visible with Atlas.ti: computer assisted qualitative analysis as textual practices. Historical Soc Res 2007;19(Suppl.):276—98. McMillen RE. End-of-life decisions: nurses’ perceptions, feelings and experiences. Intens Crit Care Nurs 2008;24(4):251—9. Norton SA, Bowers BJ. Working toward consensus: providers’ strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 2001;24:258—69. Omansky GL. Staff nurses’ experiences as preceptors and mentors: an integrative review. J Nurs Manag 2010;18:697—703. Sanders C. Application of Coliazzi’s method: interpretation of an auditable decision trail by a novice researcher. Contemp Nurse 2003;14(3):292—302. Shorter M, Stayt LC. Critical care nurses’ experiences of grief in an adult intensive care unit. J Adv Nurs 2010;66(1):159—67. Sinclair HAH, Hamill C. Does vicarious traumatisation affect oncology nurses? A literature review. J Oncol Nurs 2007;11(4):348—56. Society of Critical Care Medicine. Critical Care Statistics in the United States 2012. http://www.sccm.org/SiteCollection Documents/StatisticsBroch d4.pdf [accessed 31.10.12]. Stayt LC. Nurses’ experiences of caring for families with relatives in intensive care units. J Adv Nurs 2007;57(6):623—30. Treece PD. Communication in the intensive care unit about the end of life. AACN Adv Crit Care 2007;18(4):406—14. Truog RD, Cist AFM, Brackett SE. Recommendations for end-oflife care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 2001;29(12):2332—48. Waldrop DP, Nyquist K. The transition from routine care to end-oflife care in a nursing home: exploring staff perspectives. J Am Med Dir Assoc 2011;12(2):114—20. Wiegand D. In their own time: the family experience during the process of withdrawal of life-sustaining therapy. J Palliat Med 2008;11(8):1115—21. Wiegand DL. Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: interactions between patients’ families, healthcare providers and the healthcare system. Am J Crit Care 2006;15(2):178—87. Wilson J, Kirshbaum M. Effects of patient death on nursing staff: a literature review. Br J Nurs 2011;20(9):559—63. Wright PM. Innovations in bereavement education. J Nurs Educ 2011;50(8):476—8. Zander M, Hutton A, King L. Coping and resilience factors in pediatric oncology nursing. J Pediatr Oncol Nurs 2010;27(2): 94—108.
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Intensive and Critical Care Nursing (2014) xxx, xxx—xxx
Available online at www.sciencedirect.com
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ORIGINAL ARTICLE
Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study Richard B. Arbour a,∗, Debra L. Wiegand b a b
In-Patient Liver Transplant Coordinator, Thomas Jefferson University Hospital, Philadelphia, PA, USA University of Maryland School of Nursing, Baltimore, MD, USA
Accepted 16 December 2013
KEYWORDS Palliative care; End-of-life; Nursing roles; Family presence; Patient/family advocacy
∗
Summary Background: Critical care nurses frequently care for dying patients and their families. Little is known about the roles experienced and perceived by bedside nurses as they care for dying patients and their families. Objectives: The purpose of this study was to understand the experiences of critical care nurses and to understand their perceptions of activities and roles that they performed while caring for patients and families during the transition from aggressive life-saving care to palliative and end-of-life care. Methods: A descriptive, phenomenological study was conducted and a purposive sampling strategy was used to recruit 19 critical care nurses with experience caring for dying patients and their families. Individual interviews were conducted and audio-recorded. Coliazzi’s method of data analysis was utilised to inductively determine themes, clusters and categories. Data saturation was achieved and methodological rigour was established. Results: Categories that evolved from the data included educating the family, advocating for the patient, encouraging and supporting family presence, managing symptoms, protecting families and creating positive memories and family support. Participants also identified the importance of teaching and mentoring novice clinicians. Conclusions: The results of this study have important implications for clinical practice, education and research for optimal preparation in providing end-of-life care. © 2014 Elsevier Ltd. All rights reserved.
Corresponding author. Tel.: +1 215 549 1158; mobile: +1 267 243 1470. E-mail address: [email protected] (R.B. Arbour).
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Implications for Clinical Practice • • • •
Many nurses may be unprepared for roles they encounter providing care for dying patients and their families. Study benefits include improved education for nurses in caring for dying patients and their families. Education about anticipated roles may better prepare nurses for the demands of patient and family care at end-of-life. Study findings can be incorporated into nursing orientation/preceptorship, undergraduate and graduate nursing education. • Future research should be directed at best practices to mentor, teach and prepare nurses to provide optimal end-oflife care.
Introduction Critical care nurses provide care to dying patients and their families. In critical care units the mortality rate ranges between 6.04% and 14.4% depending on diagnosis (Society of Critical Care Medicine, 2012). One context of care for dying patients and their families is when a patient dies despite aggressive curative care. A second context is caring for dying patients and their families when decisions have been made not to pursue aggressive curative care or resuscitation. This second circumstance applies to most patients who die in critical care units as decisions to withhold and withdraw life-sustaining therapies are made by families and health care teams with patient care transitioning from life-saving to palliative and end-of-life care (Wiegand, 2008). Several factors influence how nurses care for dying patients and their families as well as roles and role expectations during the transition from aggressive curative to palliative and end-of-life care. Nurses may be influenced by prior experiences such as the death of a family member as well as death and dying in the clinical setting. If nurses perceive role confusion during the care of dying patients and their families this increases the degree of stress experienced, limiting effectiveness in providing care and compounding their grief responses (Stayt, 2007). The degree of coping effectiveness in response to imminent and actual patient death may also be affected by role confusion and stress experienced during care of dying patients and their families (Stayt, 2007). Avoidance and compartmentalisation of feelings and grief without expression may lead to cumulative stress, ineffective coping and burnout (Gerow et al., 2010). Nurses have reported that ritualistic caring practices such as ceasing unnecessary monitoring, discontinuing aggressive treatments and making the deceased or dying patient look ‘‘good’’ or ‘‘presentable’’ for the family helps with coping (Shorter and Stayt, 2010). Nurses provide vital care to patients and families at the end-of-life. Researchers have described the important role that critical care nurses perform when they ‘‘plant the seed’’ beginning pivotal discussions regarding goals of care (Fridh et al., 2009; McMillen, 2008; Norton & Bowers, 2001). After nurses plant the seed, important meetings are often held so that discussions can occur with families, advance directives can be discussed and end-of-life decisions can be made (Fridh et al., 2009; McMillen, 2008). Additional vital aspects of family care include ensuring that patients do not suffer, helping relatives feel less uncomfortable and more accepting of the dying process as well as using nursing ‘‘presence’’ so families feel comforted and supported (Fridh
et al., 2009). Critical care nurses have a vital role in facilitating meetings between families and the critical care team. After decisions are made to cease aggressive, curative treatment, critical care nurses play an active role in facilitating the timing of withdrawal of aggressive treatments as well as ensuring that families have time to spend at the patient’s bedside to say good-byes (Fridh et al., 2009; McMillen, 2008). Coordinating optimal timing of treatment withdrawal is important to family members and communicates dignity and compassion (McMillen, 2008). Addressing symptoms of distress, making the environment more comfortable for the patient and family, facilitating a comfortable death and managing one’s own emotional state are important across multiple disciplines (Waldrop and Nyquist, 2011). Although critical care nurses frequently care for patients and their families as care transitions to palliative and endof-life care little is known about how this is experienced by individual nurses with particular regard to the roles they perform. The purpose of this study was to improve understanding of the role perceptions experienced by critical care nurses during transition from aggressive, life-saving care to palliative and end-of-life care. Understanding the roles performed by critical care nurses during these transitions is important in the education, training and orientation of critical care nurses.
Methods This descriptive, phenomenological study sought to answer the question, ‘‘What do critical care nurses experience and what are their perceptions of their roles while caring for patients and their families during the transition from aggressive, life-saving to palliative and end-of-life care. Coliazzi’s methodology (Coliazzi, 1978; Sanders, 2003) for conducting phenomenological research was used to guide the investigation. Following research proposal development and review, the protocol, with supporting documents, recruiting tools, scripted interview questions and demographic questionairre was submitted for approval to the Institutional Review Board of Albert Einstein Medical Center, where this study was conducted. Following IRB approval, participant recruitment and data collection began. One investigator (RA) conducted all interviews. The investigator encouraged study participants to describe the lived experience of caring for dying patients and their families. A broad question was asked initially followed by additional follow-up probing questions to gain further insight into the lived experience to understand each nurses perceptions of their roles. This research reported in
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Self-described nursing roles experienced during care of dying patients and their families this article has been carried out in accordance with The Code of Ethics of the World Medical Association (Declaration of Helsinki).
Sample and setting Study participants were recruited from the medical and surgical critical care units of a tertiary care medical centre. Inclusion criteria consisted of having had the experience of caring for dying patients and their families in the critical care setting including when care transitioned from aggressive to palliative and end-of-life care. A purposive sampling strategy was used to obtain a sample of 19 critical care nurses. The intent of the sampling strategy was to recruit a sample that included a wide spectrum of participant ages, ethnicity and duration of clinical practice.
Recruitment procedures Participant recruitment was accomplished using multiple techniques including advertising in the institutional newsletter for employees of the medical centre, describing the study in critical care shared governance meetings and in unit-based staff meetings, and distributing recruitment notices for study participation through the hospital e-mail system. A final technique that was most effective included directly approaching and asking critical care nurses to be study participants. Upon recruitment, written informed consent was obtained from each study participant.
Study procedures Initial recruiting contacts with study participants took place within the critical care complex of a tertiary care referral centre. Upon agreeing to study participation, the individual nurses met with one of the investigators (RA) in a private office within the critical care complex. Written informed consent was obtained. Each participant completed a demographic data questionnaire. Each interview was guided by an interview guide. The duration of each interview varied with interviews ranging from 20 to 100 minutes. Audiotaped interviews were transcribed verbatim as soon as possible following data collection. Observations were made and field notes including basic descriptions of nonverbal communication from the study participants such as eye contact, posture, tone of voice, speech patterns and emotional responses were recorded. As appropriate, the researcher asked additional questions for follow up.
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feelings were extracted. The meanings of each significant statement were identified and formulated. Emerging commonalities as well as common themes were identified. The themes were referred back for validation to the original transcribed interview. The themes were further analysed and grouped into clusters and then categories. Data collection and data analysis continued until consistent categories emerged. The results were integrated into a description of the phenomenon being studied. Data saturation was achieved and methodological rigour was established. An audit trail was established. Two researchers independently performed data analysis. They met and reviewed the emerging themes, achieving consensus for most of the themes. Differences were discussed and agreement was reached on final themes. Both researchers worked together to determine clusters and categories. Six of the 19 critical care nurses reviewed and confirmed themes extracted from their individual interviews, confirming the credibility of the final summary of the phenomenology.
Results The sample consisted of 19 critical care nurses with a mean age of 35 (range 21—52) years. The majority of the participants were female (n = 17, 89.4%) and the racial and ethnic background was largely Caucasian (non-Hispanic) (n = 14, 73.7%). There was a spectrum of educational backgrounds with 10.5% having an Associate’s degree, 47.4% with a nursing diploma, 36.8% with a BSN and 5.3% Master’s prepared in nursing. Most participants (84.2%) had the experience of transferring a patient from the ICU following withdrawal of life-sustaining treatments. The mean number of years in clinical practice was 9.9 (range 1—25) years and in critical care practice was 7.2 (range 1—25) years. Demographic data for the study participants is summarised in Table 1. Categories that evolved from the data included educating the family, advocating for the patient, encouraging and supporting family presence, managing symptoms, protecting families and creating positive memories and family support. The categories help to understand the experience of the critical care nurses and the roles they use when caring for dying patients and their families. Some of the study participants also described the obligation they felt to teach and mentor new nurses in providing care to dying patients and their families. A general pattern that emerged from the participant’s responses was a higher comfort level with role expression during care of dying patients and their families associated with older clinicians, longer times in practice and additional experiences dealing with death outside of the clinical setting.
Data analysis Educating the family Demographic data were summarised by determining frequencies and percentages. Coliazzi’s (Coliazzi, 1978; Sanders, 2003) method of data analysis was utilised to inductively determine themes, clusters and categories. Atlas.ti computer software was used to organise and manage data (Gerow et al., 2010; Konopasek, 2007) All transcribed interview data were carefully read to develop a ‘‘sense’’ of the lived experience of each participant. Each transcribed interview was again reviewed and significant statements and
The critical care nurses extensively discussed the importance of educating the family. Family education occurred as a normal part of nursing interaction with families and took multiple forms depending on family needs, background, characteristics and emotional state. Family education included what is entailed in withdrawal of mechanical ventilation and vasoactive medications as well as measures ensuring patient spiritual and physical comfort. Family education
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R.B. Arbour, D.L. Wiegand Table 1
Description of participant demographics.
Demographic characteristics
n (%)
Participants (n) Age (years)
19 35 (mean) 21—52 range
Gender Female Male
17 (89.4%) 2 (10.6%)
Racial/ethnic background Asian or Pacific Islander Black, not of Hispanic origin White, not of Hispanic origin
1 (5.3%) 4 (21%) 14 (73.7%)
Marital status Single/never married Married/living with partner Separated/divorced
7 (36.8%) 9 (47.4%) 3 (15.8%)
Level attained in nursing education Associate’s degree Diploma programme Bachelor of science in nursing Master’s degree
2 9 7 1
Religious affiliation Protestant Catholic Buddhist None Other (Christian)
2 (10.5%) 12 (63.1%) 1 (5.3%) 1 (5.3%) 3 (15.8%)
Have you experienced transferring a patient out of the ICU following withdrawal of aggressive curative treatment? Yes No
16 (84.2%) 3 (15.8%)
Do you have any religious or philosophical views that impact on your nursing care in end-of-life situations? Yes No
8 (42.1%) 11 (57.9%)
Number of years in clinical practice 0—1 2—4 5—10 11—15 16—20 21—25
2 3 7 3 1 3
(10.5%) (15.8%) (36.8%) (15.8%) (5.3%) (15.8%)
Number of years in critical care practice 0—1 2—4 5—10 11—15 16—20 21—25
2 5 7 4 0 1
(10.5%) (26.3%) (36.8%) (21%)
Does your culture have any beliefs or teachings about end-of-life? Yes No
8 (42.1%) 11 (57.9%)
(10.5%) (47.4%) (36.8%) (5.3%)
(5.3%)
was most effective when perceived by family members as sensitive, respectful, patient-specific and empathetic. Teaching often was in response to perceived concerns on the part of the family. In one instance a nurse discussed morphine administration with a patient’s family, ‘‘they were very worried that the morphine would kill him and so they like got nervous when you went in to give him morphine.’’ The nurse understood that the family ‘‘wanted him to be comfortable but didn’t want like a Kevorkian style.’’ The nurse responded by explaining about misconceptions regarding analgesia, that ‘‘The medicine may decrease respiration . . . and lower the blood pressure a little bit but wasn’t what was killing him . . . wasn’t a direct cause of the death.’’ In a second instance, the family expected death to occur and had agreed to extubation. The nurse stated ‘‘. . .They already knew he was going to go, they just didn’t know what time it would be.’’ Here, family education took the form of explaining the dying process ‘‘like comfort issues . . . administering medications’’ as well as what to expect as the moment of death approached.
Advocating for the patient Another important role described was patient advocacy. One example of advocating for a patient included ensuring that appropriate pain medication was given. One participant stated: ‘‘. . .I feel they (the patient) suffered before we really got the doctors to pay attention to comfort issues and order appropriate pain medication . . . once the patient was more comfortable it was so much easier for him and his family.’’ Another example involved a critical care nurse advocating for the patient to document her wishes. The nurse described a patient who ‘‘really needed the power of attorney and an advanced directive before she got worse.’’ The nurse went on to say ‘‘so we got the case manager, social worker and her (the patient’s) person of choice in the room, sat down and talked with her. We got all the paperwork that needed to be done and it went smooth. I felt good about the referral and being able to follow through.’’ Part of the nursing role in patient advocacy was supporting and advocating for patient wishes to be honoured. In a third instance, the patient was twenty-two years old and the nurse felt for the mother and father with her (the patient) having ‘‘her whole life ahead of her.’’ When the parents came in, the patient had already ‘‘coded’’ six times. The father said ‘‘. . .please don’t let her die and there was nothing I could do and I knew. I put my arms around the mother and she said what can I do? I said . . . you’ve got to leave her go and they did.’’ Here, patient advocacy meant helping the family to let go. Patient advocacy also takes the form of truly listening to the patient. One critical care nurse described, ‘‘The patient said: ‘please, no more!’ Once the family understood what that (please no more) meant, I think there was a peace in the room. The whole atmosphere changed from being very tense to actual peace, the patient was put on hospice, he got the pain medication and we did no more. We could see the calm in the whole room, it was pretty amazing.’’ This expression of patient advocacy, helping the family to listen to and understand what the patient’s wishes were helped the
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Self-described nursing roles experienced during care of dying patients and their families family make appropriate decisions, withdrawing aggressive curative care and starting palliative and end-of-life care. This helped the entire patient and family dynamic in coming to terms with impending death. Nurses also described the importance of advocating for good pain management. As one nurse described, ‘‘. . .they (the patient) suffered because a lot of times physicians don’t want to administer pain medication . . . and the patients need more than just the minimum dose. I’ve had physicians order acetaminophen and I’m like, that’s just not going to cut it. I got them to order more appropriate drugs at the right dose and the patient was far more comfortable.’’
Encouraging and supporting family presence The critical care nurses described how important it was for them to encourage and support family presence. One participant felt that the visiting hour restrictions were not helpful and asking the family to leave would have not helped the situation. This was confirmed over the next several hours as the family members began saying: ‘‘Well maybe this isn’t the best thing for mom.’’ Or ‘‘Well maybe this isn’t what she wants.’’ As described by one participant: ‘‘It was like a Lifetime movie . . . all in there . . . and actually caring for the patient, you could almost see them embracing her and embracing the process of death. They knew at that point she’s going to die and she’s accepted it.’’ Encouraging family presence at the end-of-life allowed loved ones to say their final good-byes. One of the critical care nurses stated, ‘‘I felt good that they were going to be OK, you know and I know her husband would be OK because he felt better that she had that lucid period. That she was able to say that she loved him and that made him feel really good. . .. So I felt good that they (both) would be OK.’’ Family presence provided family members with important time to be together. One critical care nurse described, ‘‘Every family member just went around and wanted to say something . . . to tell a story. . .. I think that actually helped a lot with the family. That was a happy moment that was a happy death and dying.’’ Another critical care nurse mentioned, ‘‘. . .that having family presence at end-of-life was an opportunity to help family understand what was happening.’’ She went on to share; ‘‘When they were well aware of what’s happening. . .. I think they are OK with it.’’
Managing symptoms One role was the importance of managing patient symptoms during the dying process. Many participants described a connection between their ability to assist in the patient having what they considered good symptom management (providing a comfortable death) and their respective satisfaction with their individual performance. As described by one participant, ‘‘Once the patient’s decision was made . . . the ventilator was discontinued and the morphine drip was started, he was finally able to get what he and his family wished. In the end, I was happy to be able to see that.’’ Some participants felt that providing and facilitating good symptom management or a good death had a bearing on how they felt after a particular working shift. In other words, making sure that everyone involved concentrated on dong ‘‘the
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right thing.’’ In one instance, ‘‘. . .When we see the patient die comfortably, on their own terms, it’s a more pleasant experience for everybody, for people to watch. That is (good symptom management/comfortable death) what you would want for anyone as a human being.’’
Protecting families and creating positive memories Multiple participants referred to protecting families as ‘‘TLC’’ and going beyond the ‘‘call of duty.’’ The role of protecting families was also articulated as protecting their memories by helping the patient to look as comfortable and clean as possible while minimising technology. One participant shared frustration when faced with transferring a dying patient to a general medical floor bed stating: ‘‘. . .I feel that’s very rude to the family . . . it’s rude to the patient and it’s a disservice to the patient . . . and personally stressful getting rid of that patient to get another crashing patient.’’ In doing this, so much more stress is experienced by the family. Having to transfer a dying patient out quickly under those circumstances ‘‘is . . . one of the crappiest things you can have a family watch, yes, I am passionate about this.’’ Another participant stated, ‘‘Death is supposed to be nice. It’s supposed to be comfortable (for the patient) and comforting (for the family). You want the last thoughts or memories to be nice rather than stressful.’’ Facilitating family involvement to make the patient’s death easier for family members and to help provide positive memories of the experience was common. As stated by one participant, ‘‘. . .If the family wants to see, let them come in . . . if the family wants to hold their hand, let them hold their hand.’’ This gave the family the experience of being these as much as possible, seeing a comfortable and dignified death and being able to say their final good-bye, preserving positive memories for the family as a result.
Family support Family support took the form of providing necessary information, advocating for family members while making health care decisions, providing emotional support, reassurance, acceptance and encouragement. A participant described ‘‘. . .Family members aren’t sure about continuing certain things . . . they need to be helped to understand . . . and the best thing you can do is make them comfortable.’’ This ‘‘making them comfortable’’ while they (family members) are unsure what to do ultimately is a statement of nursing’s role in family support as they move towards acceptance, understanding and making informed end-of-life decisions about someone they love. In supporting the family ‘‘. . .I kind of try to put myself in their position. You have to be tender (and supportive) when people are experiencing things like that.’’ Another participant had a ‘‘feeling’’ that death was imminent and supported the family by continuing caring and a non-judgmental attitude as ‘‘. . .they rescinded the DNR, I put myself in their position . . . what would I do at a time like this if a dying family member rallied and became lucid. It was important to support the family. . .. I didn’t have to agree because it was ultimately their decision.’’ This support kept an ongoing, caring relationship with the family
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rather then put up barriers to trust and effective communication. Family support and advocacy took the form of seeing that family wishes were honoured by supporting the patient and timing of extubation and withdrawal of vasopressors pending the arrival of other family members. As shared by one clinician, ‘‘. . .it felt actually good when her (the patient’s) daughter made it there . . . and she died, with her daughter. It gave the daughter peace of mind and allowed her to say good-bye. Being able to support family like this also is where I get my peace of mind.’’ Following through on opportunities for family support in a form appropriate to individual family and situational needs was important to study participants and made a difference in satisfaction with family care, support and advocacy.
Mentoring and teaching Mentoring was identified by multiple participants as an important role. Eloquently stated by one participant; ‘‘I would like them to keep in mind anything that they do for this patient that this is someone’s husband, wife, grandmother, grandfather. . ..’’ As for assessing a novice’s level of comfort with a particular assignment; ‘‘A lot of times people have issues at home. They may be caring for a family member who is in hospice. To be pushed to take care of this (a dying patient) may not be the best thing for that graduate nurse, may not be the best assignment. I would want to assess what their level of comfort is.’’ In this context, mentoring is integrated with the practice of caring for a colleague. In a second example, a participant showed sensitivity to the needs of patient and family as well as the novice nurse. She described, ‘‘When you are precepting somebody I think it’s important that they have those experiences so that they can hear dialogue, so they can see what goes on, the chain of events, the course of action. I love it when orientees ask a lot of questions . . . what if type of questions.’’ It definitely needs to be a part of the orientation process. Another participant shared her experience. ‘‘I was fortunate to have her with me as a mentor one night. I had my first patient here who died and she was explaining a lot of that stuff to me, the gurgling, the fluids, like what it all meant. I think (as a part of orientation) it would be a good idea to sit with them (the novice) and talk about death and whether they had experienced death before with family members.’’ The availability of someone to mentor her through that first experience was clearly helpful and appreciated as shared by this participant. Another participant discussed the importance of teaching and mentoring new critical care nurses. She stated; ‘‘It’s important to work with people through the process, to make sure they don’t feel like they are being abandoned. Even guidance on things like creature comforts . . . enough chairs, tissues, water in the room . . . knowing that is very helpful for a new nurse to start with in helping the family.’’
Discussion The role of family support/advocacy may be operationalised by supporting families in decision-making processes,
providing spiritual support, practicing cultural sensitivity and providing emotional support as well as assisting family preparation for death (Kirchhoff and Faas, 2007). This supports findings of Wiegand (2006) who found that families perceived support from healthcare providers when they assisted with appropriate and timely information as well as accommodating stress and grief among family members (Wiegand, 2006). The role of family care encompasses protecting final memories of their loved one. In this context, expressions of caring such as attention to detail in helping the patient ‘‘look good’’ for the family as well as facilitating a more ‘‘homelike’’ atmosphere by playing music, removing all nonessential technology and monitors as clinically appropriate can help provide more positive and comfortable final memories. The role of optimal communication with family as well as healthcare team members will remain integral in caring for families of dying patients (Treece, 2007). The importance of providing a ‘‘good death’’ with effective symptom management and being able to manage the dying event is essential (Shorter and Stayt, 2010). Caring for dying patients and their families is complex. Frequently, patients are admitted to critical care settings with the expectation and goal of receiving, aggressive, curative care. Many patients do not progress towards recovery from acute illness or injury but rather experience continued decline in clinical status, ultimately dying. Patients may die suddenly during efforts to provide aggressive, curative care or over an extended time with family members and health care providers deciding not to pursue aggressive care, rather focusing on comfort, quality of life and effective symptom management. Providing care for dying patients and their families throughout this continuum calls upon the clinician to assume roles including family care/support, advocacy and symptom management as well as participating in shared decision-making among team members, family and the patient (Truog et al., 2001). Nursing is essential in that patients and their families frequently look towards the nurse attending to their loved one to provide honest information regarding what to expect as death approaches. Many study participants’ derived improved personal and professional satisfaction from effective role expression and optimal symptom management. The reverse is also true in that clinicians that feel inadequate role expression including less effective advocacy, symptom management or patient/family education experience negative consequences. These consequences may include increased stress, job dissatisfaction and patient as well as family dissatisfaction with end-of-life care. As such, identifying means to improve care is essential. Data from study participants offers insight into nursing roles experienced while caring for dying patients and their families. Significantly, roles are expressed in multiple forms as the individual clinicians sought not just to provide a comfortable and dignified patient death but also to make the family experience more positive and less stressful. Clinical implications of this study are multiple. One implication is that improving understanding of roles encountered by bedside clinicians can improve care delivery and patient/family satisfaction with end-of-life care. A second implication is that improved care delivery may enhance clinician selfesteem and encourage future initiative with dying patients and their families. In exploring the theme of encouraging
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Self-described nursing roles experienced during care of dying patients and their families and supporting family presence, a nurses’ outcome that she ‘‘felt good and that they both would be OK’’ indicated a positive outcome for the nurse. These positive clinician outcomes can reinforce taking initiative such as encouraging and supporting family presence. Additional positive experiences can result in improved skill during care of dying patients and their families. A third implication is the interrelationship between effective role expression in end-of-life care, effectiveness of patient/family care and job satisfaction. Participants describing experiences in most identified themes articulated positive feelings of job satisfaction associated with effective patient/family care, advocacy and role expression. A significant nursing role explored was that of patient advocacy (McMillen, 2008). Advocacy may involve initiating discussions regarding end-of-life care, facilitating a comfortable and dignified death as well as education and encouraging family presence at end-of-life. Balancing aggressive versus palliative care, information and expectations and intimacy versus distance was central to roles of establishing rapport with patient/family and preparing families for patient death (Boroujeni et al., 2009). Self-care and peer support remain paramount in mutual support, facilitating staff sharing feelings with one another, healthy grief expression and avoiding compartmentalisation of feelings and experiences as well as compassion fatigue (Wilson and Kirshbaum, 2011). The recurring role of patient advocacy takes the form of facilitating communication between physicians and family members as well as reconciling a patient advance directive with plan of care. Expediting family ability to make end-of-life decisions by facilitating communication is reported as a satisfying role expression (Calvin et al., 2007). A finding not previously explored was the concept of mentoring as preparation for novice clinicians to care for dying patients and their families. Participants gave specific ideas on how best to accomplish this, taking into account the developmental stage of the clinician, providing appropriate levels of support and providing a caring, healthy work environment where this takes place. Education and personal/professional development may take the form of more formal educational experiences and include grief and bereavement as well as self-care strategies (Wright, 2011). This may also be facilitated by evidence-based content presented in formal didactic and blended formats including participation of students in ongoing presentation and sharing of content (Kavanaugh et al., 2009). In practice, optimal learning and assimilation of roles encountered and practiced delivering care to dying patients and their families are learned from mentoring and precepting by more experienced colleagues. The roles of mentoring and precepting, while stressful, are integral to teaching, skill development and role expression in nursing students and new nurses in clinical practice (Omansky, 2010). Role development and expression are enhanced by balancing professional boundaries and closeness to patients and families. Relationships between nurse and patient/family can provide family support and actualise this role during the dying process. Close collegial relationships among peers enhance a nurses’ ability to manage grief, loss and other workplace stressors (Zander et al., 2010). Peer support, managing compassion fatigue among team members
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and individually is a significant role expression because it directly affects quality of care. Emotional fatigue and ‘‘burnout’’ can lead to attendance issues and causing individuals to leave specialty areas where they experience exposure to patient death (Aycock and Boyle, 2009). Role of peer support and individual recognition/management of symptoms of distress consequent to providing end-of-life care may help prevent and manage vicarious traumatisation and long-term harm from work-related stress (Sinclair and Hamill, 2007). Additional supporting roles identified include senior clinicians supporting and mentoring novice nurses as they experience caring for a dying patient and family. Patient and family advocacy in care planning with assessment of acuity and accurate, timely information to family members becomes a significant role expression (Calvin et al., 2009).
Study limitations Since one investigator collected all data there was potential researcher bias in data collection. This was addressed by reviewing a sampling of data with the respective study participants to ensure that no significant role identification was missed. A second limitation was the investigator worked in this facility, raising the possibility of less complete responses by participants out of a concern for privacy. This was addressed by careful and thorough discussion during the informed consent process and having an additional data collector available if discomfort was communicated regarding the investigator as data collector. Demographics are an additional possible study limitation. The overwhelming majority of participants were female clinicians and white, limiting generalisability of results.
Study implications Potential study benefits include improved education for nurses in caring for dying patients and their families. Optimising care, responses to patients and their families during end-of-life situations by optimal role delineation and expression can improve patient and family satisfaction. Improved job satisfaction improves stress management among staff, delivery of care and potentially staff retention. Education for nursing professionals about roles encountered when providing care to dying patients and their families may result in better preparation for the demands imposed by palliative care situations where both the patient and family require additional mental, physical, psychological and spiritual resources. Findings from this study can be incorporated into nursing orientation, undergraduate and graduate nursing education. Study findings may also be integrated into preceptorship in which more experienced clinicians, coordinating with advanced practitioners, model behaviours and responses to assist novice clinicians in learning to deal with death and dying. This may result in clinicians being prepared to more effectively care for patients and families during end-of-life situations as well as decreasing staff turnover and institutional loss of investment costs incurred during nursing recruitment and orientation.
Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002
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Additional research is needed regarding how best to prepare nurses to care for patients as care transitions from aggressive curative care to palliative and end-of-life care. It is unknown how nurses best learn the knowledge and skills that they need to provide palliative and end-of-life care to patients and families. Future investigations may compare teaching techniques such as classroom discussion, case-based approaches and patient simulation. Nurses can also be followed over time to see how increased palliative care knowledge and experience influence their competencies in the provision of care.
Conclusions Study findings have important implications for clinical practice, education and research. Critical care nurses may be unprepared for roles that they may need to fill in clinical practice when caring for dying patients and their families. Critical care nurses may be unprepared for three reasons. One reason is length of time in practice. Clinicians with limited time in practice may not have as much exposure to caring for dying patients and their families. Lack of this experience may lead to anxiety and possibly reluctance in taking initiative with role expression when faced with end-of-life care. A second reason may be related to clinician age and prior experiences dealing with death of a friend or family member. Younger nurses with little or no prior context dealing with their own feelings associated with death of a loved one may be less prepared for feelings they may encounter during their initial experiences caring for dying patients and their families. A third reason is that teaching death and dying in nursing education programmes is, when provided, more likely to be didactic rather than experienced-based learning. Teaching these roles effectively in nursing education and critical care orientation is essential. Future research should be directed at best practices to mentor, teach and prepare nurses to provide optimal end-of-life care.
Role of the funding source This study was supported by a $2000.00 grant from the Southeastern Pennsylvania Chapter of the American Association of Critical-Care Nurses.. The study sponsor did not have a role in study design, data collection, data analysis, data interpretation in manuscript writing or choice of publication/journal for submission.
Acknowledgements The researchers thank the nursing staff for their support and participation in this study. Release time support for proposal development, revision and data collection/interview of participants was provided by Albert Einstein Medical Center.
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Please cite this article in press as: Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs (2014), http://dx.doi.org/10.1016/j.iccn.2013.12.002