A nurse demonstrated caring by helping the family members to: (Select THAT all apply)

Heart Lung. Author manuscript; available in PMC 2015 Sep 1.

Published in final edited form as:

PMCID: PMC4150813

NIHMSID: NIHMS567883

Judith A. Adams, PhD, MSN, RN, FNP-BC

Post Doctoral Fellow, Durham VAMC, Adjunct Faculty, Duke University School of Nursing 508 Fulton Street, Durham, NC 27705 (828) 551-5703

Sharron L. Docherty, PhD, PhD, PNP-BC, FAAN, Associate Professor

Duke University School of Nursing 307 Trent Drive, DUMC 3322 Durham, NC 27710 (919) 668-3836

James A. Tulsky, MD, Professor of Medicine and Nursing

Chief, Duke Palliative Care DUMC 2706 Durham, NC 27710 919-668-7215

Karen E. Steinhauser, PhD, Associate Professor of Medicine

Durham VAMC 508 Fulton Street, Durham, NC 27705 (919) 286-0411

Donald E. Bailey, Jr., PhD, PhD, RN, FAAN, Associate Professor of Nursing

Duke University School of Nursing 307 Trent Drive, DUMC 3322 Durham, NC 27710 (919) 681-3003

Abstract

Objectives:

To explore how family members of ICU patients at high risk of dying respond to nursing communication strategies.

Background:

Family members of ICU patients may face difficult decisions. Nurses are in a position to provide support. Evidence of specific strategies that nurses use to support decision-making and how family members respond to these strategies is lacking.

Methods:

This is a prospective, qualitative descriptive study involving the family members of ICU patients identified as being at high risk of dying.

Results:

Family members described five nursing approaches: Demonstrating concern, building rapport, demonstrating professionalism, providing factual information, and supporting decision-making. This study provides evidence that when using these approaches, nurses helped family members to cope; to have hope, confidence, and trust; to prepare for and accept impending death; and to make decisions.

Conclusion:

Knowledge lays a foundation for interventions targeting the areas important to family members and most likely to improve their ability to make decisions and their well-being.

Keywords: Palliative Care, Nursing Communication, Family Members, End-of-Life, Critical Care

Introduction

Fifty percent of U.S. hospital deaths occur during or after a stay in an intensive care unit (ICU), 1 and two thirds of ICU deaths involve an active decision to limit treatment. 2-6 Because most ICU patients are not able to make decisions for themselves, 7-10 family members must make these difficult decisions on behalf of their loved ones. When doing so, they may worry that their loved one has suffered or that they have given up too soon, and they frequently harbor lingering feelings of doubt, regret, and guilt. 11,12 During this vulnerable time family members rely on healthcare professionals to guide them through the decision-making process.

ICU nurses are positioned uniquely to provide such support because they have the most contact with both patient and family. Nurses deliver intimate, personal care allowing them to develop trusting relationships with patients and families, assess their needs, 13,14 and observe the responses that family members have to the changing condition of the patient. Some experts have advocated that nurses facilitate end-of-life (EOL) communication in the ICU; 15-18 however, little evidence points to which specific strategies are effective in this setting. 19 Without knowing which approaches family members find helpful or harmful, nurses rely on intuition 20 or personal preferences to guide them, or they avoid such discussions altogether.

Research indicates that physicians can learn to communicate better about difficult topics and that intuition alone is a poor guide. 21 Some communications skills described for physicians treating patients at the end of life may translate to nursing practice; however, the role that nurses play is distinct enough that strategies specific to nurses are likely to be more effective. Thus, empirical evidence about what strategies are perceived as effective by family members is needed so that nurses can guide their practice by knowledge of what works rather than relying on intuition. This study explored, from the perspective of family members of ICU patients at high risk of dying, the specific communication and support strategies that nurses used and how family members responded to these strategies.

Methods

We used a prospective, qualitative descriptive design, identifying patients likely to need complex decision-making and interviewing their family members. We recruited participants from two 16-bed adult ICUs in a tertiary care university hospital system in the Southeastern United States. Because physicians are better able to discriminate between survivors and non-survivors than scoring systems, 22 to determine eligibility, we asked the attending physician or fellow to identify patients whom they deemed to be at high risk of dying or needing complex decision-making.

We applied a purposive sampling technique using maximum variation, 24,25 varying on attributes shown to explain differences in attitudes about the use of life support, including ethnicity, gender, and socioeconomic status (SES). 26,27 Ethnicity was stratified into 2 main groups, African American and Caucasian; SES was stratified into presence or absence of private insurance (including Medicare with a private supplement). We attempted to recruit at least two cases from each combination of these attributes with the goal of a maximum of 16 cases. Data collection ended when we achieved acceptable variation in attributes and redundancy of themes in analysis.

We followed each case until one of the following occurred: the patient died, the patient was discharged from the ICU, a decision was made to either withdraw life support or perform a tracheostomy for long-term life support. Because a two week time period prompts physicians to discuss EOL decisions, 29 we followed each case for up to two weeks. We interviewed each participating family member up to three times. We began each interview by asking the participant to tell the story of how the patient came to be in the ICU. We then asked directed questions, such as “what things have the nurses said or done that made it easier (or harder) for you,” and “how was the nurse helpful (or unhelpful) in making decisions?” The hospital’s Institutional Review Board approved the study, and all participants signed informed consent.

Between October 2012 and February 2013, one of the authors (JA) spent a minimum of four hours daily for six days per week on the units observing interactions among staff, family members, and patients; engaging in informal discussions with the staff and family; and attending rounds and family meetings. Data collected included patient and family demographics, observations of family meetings, daily flow sheet of patient condition, and narrative style recorded family member interviews. Daily field notes were used to provide context and assist with data interpretation. Interviews were transcribed verbatim, and the accuracy was verified by comparing the transcription to the recorded interview. 30 We used ATLAS.ti qualitative data analysis software system 31 to aid in coding, organizing, and managing the data.

We applied qualitative content analysis to these data. 30 To increase trustworthiness, we kept an audit trail of coding decisions and theme development. 30 In addition, we used reflexive memos to explore assumptions. 32 To identify family member responses to specific strategies that nurses used when supporting family members making EOL decisions, we used provisional coding 33 with a priori codes based on a review of the literature and our own pilot work. 19,34 We also used open coding, 35 identifying nursing actions and family members’ responses to those actions. 33 Once the data were coded using both a priori and a posteriori codes, we used pattern codes to categorize the data and explore emerging themes. 33 The coded text were arranged into categories and subcategories based on how the codes were related. 32 In order to understand the underlying meaning of the data, categories were linked to emerging themes, which involved interpretation and explanation. 36,37 This combination of inductive and deductive coding allowed us to go beyond the codes from the literature to develop a greater depth of understanding of how family members perceive nursing strategies.

Results

We identified 17 cases (see Table 1) and completed a total of 42 interviews with 32 family members. We achieved variation in the attributes of the family members with regard to gender (24 female, 8 male) and ethnicity (7 African American, 25 Caucasian). We also had variation in age and relationship of the family member to the patient. The income and education levels indicate a higher SES status than the general population.

Table 1

Description of Cases and Demographics

Note. W = Withdrawal of life support L=Limitation of treatment DNAR=Do not attempt resuscitation OWE=One way extubation C=Caucasian A=African AA=African American F=Female M=Male HCPOA=Health care power of attorney COPD=Chronic obstructive pulmonary disease ARDS=Adult Respiratory Distress syndrome AML=Acute Myelocytic Leukemia MOSF=Multisystem organ failure ALL=Acute Lymphocytic Leukemia CKD=Chronic kidney disease MVC=Motor vehicle accident

Of the 17 patients, 11 died; eight died in the ICU. Nine of the 11 deaths involved decisions to limit or withdraw treatment. These decisions included a “one-way extubation” (removing the endotracheal tube in hope that the patient will survive but with a pre-set plan to not re-intubate if the patient does poorly), an unaggressive approach to infection, a do not attempt resuscitation (DNAR) order, and a decision to withdraw life support.

NURSE COMMUNICATION STRATEGIES

Family members’ descriptions of nurse communication strategies and responses were collapsed into five categories described below and in Tables 2-​6. The family members’ responses to these strategies are summarized in Table 7. The categories are equally weighted in importance but presented in an order that shows cumulative logic, where suitable. For example, the fifth category, supporting decision-making, relies on the foundation of the first four categories.

Table 2

Demonstrating Concern

Table 6

Supporting Decision-Making

Table 7

Family Member Responses

Note. FM = Family Member

Demonstrating Concern

Nurses exhibited a number of behaviors that demonstrated concern (or lack thereof) for the physical, emotional, psychosocial, and spiritual well being of the family and the patient (Table 2). These included ensuring that the patient and family member were comfortable, encouraging family members to express their emotions, having an optimistic outlook, and supporting spiritual practices. For example, the need for nurses to be flexible and allow liberal visitation was a recurrent theme. The wife of a patient who subsequently died expressed this need:

I know that there is a rule that there is only 2 visitors in there, but for me and both kids to be able to be in the room at the same time and not have to separate us as a family…means a lot so we can be there together…It helped me be with my kids…for their support…We need to be together as a family right now. (Wife of P11)

When family members perceived that the nurse was caring and compassionate, they were able to trust that the nurse would be “there for them” and their family member, that the nurse “had their back.” Having this trust and confidence allowed them to leave at night and be able to rest and take care of themselves and their other family members.

Some family members described nurses demonstrating lack of concern for them or their loved one. One example was a nurse who told the wife of a dying patient that the patient could not hear her:

We always just come in and get right down in his ear and say, ‘Hey how are you? We’re here.’ [The nurse] came up and said, ‘he can’t hear you.’ And I’m like, ‘well I don’t care if he can hear me or not, I’m still going to talk to him.’ Oh, it pissed me off…Don’t come in here and tell me he can’t hear me…That doesn’t leave you with a good feeling…I go to bed feeling agitated. (Wife of P11)

She stated that she was anxious about leaving her husband under this nurse’s care.

Building Rapport

Family members described strategies that strengthened the therapeutic relationship (Table 3), which included holding family members in high esteem, being approachable, and being affable. Example behaviors included encouraging family members to talk about themselves and the patient, making eye contact, sitting close, using touch, engaging in small talk, and using humor. These strategies helped family members feel personally connected with the nurse, to trust the nurse, and to be more confident in the nursing care.

Table 3

Building Rapport

Although family members reported mostly very positive experiences with nurses engaging with them, in three cases family members described encountering a nurse who did not seem to be engaged with the family. The behaviors they identified included looking at the computer and not making eye contact, turning their back to the family member, and not introducing themselves when the family member entered the room or at shift change. The daughter of a patient described her experience with one such nurse:

Normally at shift change, you’ll get the hug or the care from the one leaving and the invitation that, ‘everything’s going to be okay’ from the one coming on board. And at [one] shift change I got the care and concern from the one leaving, and the one coming on board wouldn’t even look me in the eye. And if you don’t look a person in the eye…I did not want to leave [my father]; I was like ‘dear Lord please I’ve got to leave this place.’…When I left, there was no eye contact, there was no attempt to shake my hand, not even turn the chair in my way. So he’s here with the nurse, I’m leaving …this is not good…[and] no you don’t sleep. (Daughter1 of P13)

Family members described experiencing difficulty coping, lack of trust and confidence in care, hesitancy to ask questions, anger, and dissatisfaction in response to nurses whom they perceived as not engaging with them.

Demonstrating Professionalism

Behaviors demonstrating professionalism included showing a professional demeanor, showing respect for the patient and family members, and providing evidence that the nurse was collaborating with other health care providers (Table 4). A calm and confident demeanor helped family members cope by allowing them to know that their loved one was in competent hands. Demonstrating respect for the patient and family also instilled confidence and helped the family members cope. Some family members described behavior that demonstrated a lack of professional ethics, such as chatting about non-work related issues and not paying attention to the patient’s needs, which resulted in difficulty coping and lack of trust.

Table 4

Demonstrating Professionalism

Perceived collaboration among health care team members instilled confidence in the care of the patient and trust that information received was consistent and truthful. Several family members described nurses working together as a team, helping each other for the greater good of the care of the patient. Family members also described collaboration between nurses and physicians. The daughters of one patient described seeing the nurse interact with the physician on rounds:

• Daughter2: It’s good interaction between the doctors coming through and [the nurse], and it just, it makes you feel good.

• Daughter1: For me it was like, ‘these people have their ducks in a row, and if anything happens to my father, I truly believe that he was at the best place, and he is getting the best care.’

• Daughter2: It made me feel that they’re not dropping the ball because they’re not communicating…At least they’re working as a team to try and help our father. (Daughter1 and Daughter2 of P13)

Providing Factual Information

Family members described nurses as an important source of information about the ICU environment, treatments, and the patient’s health status (Table 5). Having the nurse explain what was happening inspired confidence and allowed them to cope better. Some expressed feeling more prepared for what might happen next.

Table 5

Providing Factual Information

Much of the information that family members received was simply factual without interpretation. Nurses told them the vital signs and lab values, often focusing on the positive aspects of this information. Family members described how they came to an understanding of the prognosis by combining what they were seeing with what they were told by the nurses and physicians. At times, the family members’ interpretations were overly optimistic, as evidenced by the following quote from the wife of a patient who was doing poorly and for whom the nurses and physicians had expressed no hope of survival. She described to me why she was more hopeful:

When I asked about the labs. And I noticed that he’s not getting any more… blood; so if he’s not, my gut is those levels are okay. He’s putting out the hundred [cc of urine] an hour, [it] seems [that] he’s putting out something—that’s better than nothing. He’s still not moving any less than he had been. Um…I noticed the tube feeding amount has changed, and they’ve increased it, and he’s tolerating that. Respiratory was just in there, and I asked how his lungs were, and apparently they’re better today than they had been. I know these are just little things. (Wife of P5)

Although family members appreciated how busy the nurses were, having one come to the phone when the family member called for an update was crucial to their ability to cope. Being told to call back later was described as excruciating for some as they wondered what was happening to their loved one.

Although most often the family members found the nurses to be informative and forthcoming, in a few instances the family members described strategies that blocked information, such as being unable to answer questions, giving vague answers, guessing at what might be wrong, and giving inaccurate information. This decreased trust and coping ability. One family member described her response to being given inaccurate information:

Some will say, ‘well nothing’s changed since last night,’ and then I will find out, yes he [had] a seizure, …well that to me is important to know in the overall scheme of things. So, I’m thinking that he didn’t have a seizure for two days, when actually he did have one the day before. (Domestic Partner of P8)

Supporting Decision-Making

Family members described that nurses supported decision-making by remaining unbiased in the face of decision-making, including leaving the decision to the family member, avoiding personal opinions, and accepting the decisions that the family member made (Table 6). Few participants described nurses openly discussing prognosis or formally delivering bad news. In many cases, nurses avoided discussing EOL decisions, deferring to the physician and focusing on other approaches, such as demonstrating concern and building rapport. However, some described that nurses interpreted information in more subtle ways, hinting at the prognosis by reminding the family member that the patient was still very ill, pointing out that the patient’s condition had worsened or was unchanged from day to day, verbalizing uncertainty about the prognosis, and using body language and facial expressions to indicate a poor prognosis.

The response of family members to this approach varied. Several described that they expected to hear the prognosis from the physician, after which the nurse would discuss it. Several family members expressed an appreciation for the ability of some nurses to indicate a poor prognosis in ways that allowed them to be informed and prepared but also to remain hopeful. Other family members described nurses whom they perceived as pushy, judgmental, or callous. An example was the wife of a patient with liver failure who described two nurses as being pessimistic and judgmental when they tried to discuss the prognosis. When probed further, she explained that what she found difficult was the way they delivered the information; she expressed resentment and mistrust because of their tone of voice and failure to make eye contact. She related that other nurses were able to “tell it like it was” with a good attitude and a positive outlook. She described these nurses as “real people people,” saying they could let her know how sick he was but do it with kindness.

Family members described nurses discussing the nature of decisions after the physician had initiated such discussions, including discussions of available options and consequences of those options, goals and values of the patient, and code status. They described nurses as sometimes approaching these discussions indirectly by hinting, for example, that a patient might have been expressing a desire not to continue life support. Some were more direct, such as the nurse who discussed the patient’s quality of life, saying, “oh yeah we can keep him on the ventilator for years, but then you have to look at the quality of life that they are going to have.” (Wife of P11)

The daughter of a patient who subsequently died told a story of a nurse who explained that continued aggressive care would cause pain for her mother and who expressed his/her own desire not to inflict unnecessary pain. The daughter said:

[The nurse] said, ‘As long as I’m here taking care of her, I’m going to do everything that I can to make her as comfortable as possible’…I came to a point where I’ve got to accept it…I felt very comfortable; I even slept better at night knowing that [this nurse] was here with mom; so I felt better. (Daughter of P15)

This nurse’s ability to frankly explain what continued aggressive treatment would entail and to reassure that the patient would be comfortable helped this family member to reframe her hope, to cope with situation, and to accept that her mother might die.

Some family members indicated that the nurses did not discuss any decisions with them and avoided bringing up the topic of EOL. One family member expressed dismay that nurses were not talking to her sister-in-law, who was the health care power of attorney, about EOL decisions:

The main thing they [nurses] are doing is just sitting there…I’m not criticizing them, but they will…say, “everything is about the same.”…I don’t know who…but it’s time…that somebody told her it’s time to start dwindling him off. Am I wrong to think that? Do you get how long this has been? (Sister of P5)

Although this participant was not the decision-maker, she indicated that what she perceived as avoidance of EOL discussions was delaying decision-making.

Discussion

We examined 17 cases of patients who were at high risk of dying to explore their family members’ responses to nursing communication and support strategies. We identified five categories of strategies: Demonstrating concern, building rapport, demonstrating professionalism, providing factual information, and supporting decision-making. These findings support and extend prior data from the nursing literature indicating that family members rely on nurses as they navigate this difficult transition. 19

The nursing literature indicates wide variation in how nurses approach discussions of EOL issues and a lack of clarity about their role. 19,38 Our study shows that nurses varied in their approaches with some avoiding EOL discussions and deferring to the physician, some using indirect approaches, and others openly discussing EOL issues. In addition, recent literature demonstrates that nurses often give family members technical information without interpretation. 39 We also saw this tendency in our study; however, some nurses were able to place the factual information in a broader context and help the family member understand the prognosis.

Findings from studies of family members of ICU patients indicate that family members look to physicians for medical decisions and discussion of prognosis. 40,41

However, one study found that some family members expressed appreciation for nurses who gave them clear prognostic information, affirmed their decisions, and helped them with decisions, such as whether to try to take their loved one home. 41 Our study demonstrated that, although some family members expected the prognosis to come from the physician, others were open to hearing prognostic information from nurses, especially if the topic had been initially addressed by the physician.

Previous studies have reported numerous needs expressed by family members of ICU patients, the most important being the need for information, having questions answered honestly in lay terms, and knowing the prognosis. 40,42,43 Other studies reported that family members also express a strong need to be heard, to feel connected with nurses and physicians, and to have frequent contact with their loved one. 44,45 We found that, although family members were hungry for information, they also highly valued nurses caring and relationship building skills and the ability of nurses to deliver information in a way that supported hope. This study demonstrated that the style of communication and the strength of relationship had a strong influence on how family members responded, regardless of the professional role of the messenger. Nurses who had developed strong connections with family members by demonstrating concern, building rapport, demonstrating professionalism, and providing information, at times were able to support decision-making by discussing the prognosis and goals of care. However, when family members perceived a nurse as uncaring, disconnected, or unprofessional, they voiced mistrust and distress at that nurse’s attempts to engage in EOL discussions.

Limitations

Because of the inherent uncertainty in determining a patient’s prognosis early in the ICU stay, participation of seven of our enrolled cases did not involve a transition from curative to palliative care; either the patient survived (n=5) or died (n=2) before any EOL decisions were made. Although data from these cases did not contribute to understanding of EOL decision-making, they did contribute to the understanding of strategies nurses use with families to demonstrate concern, build rapport, demonstrate professionalism, and provide information. The study time period of two weeks also limited the findings because several patients were in the ICU for more than two weeks. Three patients died after they had completed the study, and EOL decision-making occurred after they were no longer in the study. Additional limitations included lack of participants representing lower socioeconomic status. Additionally, the presence of the researcher on the unit and the knowledge that the researcher was a nurse might have affected how the family members responded.

Implications for Practice

Approaches to demonstrate concern and build rapport are crucial to the ability of family members to cope. When nurses use strategies such as making eye contact, facing the family, and coming to the phone when a family member calls, they instill trust and confidence, helping family members to cope. In contrast, being curt, telling a family member that their loved one cannot hear them, avoiding eye contact, and making family members wait unnecessarily for updates on the condition of their loved one are a few examples of behaviors that erode trust and make it more difficult for a family member to cope. Nurses can and should be taught these specific skills.

Implications for Future Research

Given that many of the family member participants were open to hearing prognostic information from nurses, potential research areas emerge, including investigation of how family members respond to nurses who take a leadership role in approaching discussions of goals of care. If family members are accepting of nurses engaging in such discussions, interventions could be developed and tested for their effects on family member outcomes, such as depression, anxiety, post traumatic stress disorder, regret, and guilt.

Conclusion

When interacting with family members of patients who are transitioning from curative to palliative care in the ICU, nurses use strategies that help family members cope; to have realistic hope, confidence, and trust; to prepare for the impending loss; to accept that their loved one is dying; and to make decisions. Nurses also use harmful strategies that negatively affect family members’ trust and confidence in the nurses, increase their difficulty coping, and, in some cases, might delay decision-making. Although physicians are typically the first health care professional to deliver bad news of a poor prognosis, these data suggest nurses can employ identifiable strategies that serve as an important source of information and support for family members making EOL decisions in the ICU.

Abbreviations

Footnotes

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