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| Author | Research design | Setting/sample | Themes |
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| Bach et al. [39] | Grounded theory | 2 Critical care units in teaching hospital; 14 nurses; Canada (Ontario); 14 nurses | Supporter: be present with families and listen.
Advocate: help family to understand the implications of decisions, question physicians, speak up and give opinions at family meetings, and help family think about what patient would want. Initiate discussion with physicians, explain things to family in lay terms, and give honest information without taking away hope. Outcomes: “Enabling coming to terms” and “helping to let go.” |
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| Baggs et al. [33] | Literature paper | ICU; US | Information broker: nurse as information broker and mediator. Outcomes: decrease costs and LOS and improved communication with multidisciplinary/collaborative interventions. |
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| Baggs et al. [15] | Ethnographic | ICU; 34 case studies; US | Advocate: nurses timed EOL discussions for when a physician was on rotation who was seen as open to discussing EOL issues. |
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| Barthow et al. [40] | Qualitative descriptive | Tertiary cancer center; 21 nurses; New Zealand | Information broker: provide and clarify information. Supporter: coaching, facilitating, and offering choices.
Advocate: help clarify goals and help family to understand ramifications of decisions. |
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| Bushinski and Cummings [37] | Qualitative" “appreciative inquiry” (Hammond). | Outpatient palliative care and a MICU; 8 nurses; US (Minnesota) | Information broker: interpret what physician said.
Arrange for family meetings. Supporter: build trust, acknowledge emotions, explore statements, pause, allow time, be present recognize cues of readiness to talk, support, sit close and make eye contact, turn off phone and beeper, do not look at watch, rephrase, and explore emotions. Advocate: ask leading questions. |
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| Calvin et al. [38] | Qualitative descriptive | Neuro ICU; 12 nurses; US | Information broker: translate medical terms. Suggest and set up care conferences Supporter: listen, maintain close connection with family, reassure. Advocate: elicit values, thoughts, and understandings from families, push family to make decisions at times, try to get MD to see big picture. “If she's not getting better, not waking up, then that's a sign that her brain is not functioning...and that should tell you that you need to take mom home and you need to love her and make those last days of her life more comfortable than being poked or prodded.” page 147 |
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| Calvin et al. [44] | Qualitative descriptive | CVICU; 19 nurses; US | Advocate: Acknowledge physician authority, and walk a fine line. Try to prepare family member try to tell families without really telling them. Some would tell family even at risk of being reprimanded Supporter: Promote family presence. |
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| Engstrom and Soderberg [47] | Qualitative: focus groups | ICU; 24 nurses; Sweden | Supporter: nurses felt it was important to maintain hope and not give false hope. Balance hope with realism. Hope for good death. Advocate: difficulty being honest when given conflicting info from physician and when doing treatments nurse disagrees with. |
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| Espinosa et al. [12] | Descriptive phenomenological | ICU; 18 nurses; US | Information broker: tell family members what they need to ask the physician. Supporter: build a trusting relationship with families. |
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| Fox-Wasylyshyn et al. [27] | Descriptive correlational | ICU; 29 family members; Canada | Information broker: explain equipment. Advocate: explain prognosis. Outcomes: increased satisfaction with care. |
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| Frank [48] | Literature paper | Acute care and hospice settings; 9 articles; UK | Information broker: communicate honestly
Supporter: allow patient time to make decision, support patient, recommendations of how nurses should enact their roles, engage in process with patient and physician, and develop trusting relationship based on power sharing. Advocate: Be assertive. Outcomes: assertion that nurses can increase the likelihood of a good death. |
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| Fry and Warren [28] | Phenomenology | ICU; 15 family members with varied ethnic and cultural backgrounds; US | Supporter: build trusting relationships, introduce self to family and explain equipment, and demonstrate openness and willingness to talk. Advocate: give honest information about how patient is responding to treatment. Outcomes: developing trusting relationship allows family to feel that they can ask the nurse about the patient and trust that they will get the truth. |
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| Harris [10] | Grounded theory | ICU; 9 nurses; UK | Advocate: advocated for care conferences. |
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| Haslett [53] | Cross-sectional explanatory descriptive | Acute care; 278 nurses (68% response rate); US | Information broker: educate 68%, give information 58%. Advocate: advocate 81%. Only 7% assumed role of decision-maker (determining whether DNR was appropriate). |
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| Heland [42] | Qualitative descriptive | ICU; 7 nurses; Australia | Information broker: arrange for family meetings, and coordinate the meetings to get all the interested parties together. Advocate: explain the patient’s condition to the family. |
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| Hildén and Honkasalo [34] | Qualitative interview | Acute, long-term, and home settings; 17 Nurses; Finland | Information broker: provide information to the physician Supporter: provide emotional and existential support. Advocate: clarify information given by the physician by presenting it in a way that they can understand in lay terms. Help family understand the pros and cons of decisions. Lead the family and help them to see reality. |
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| Hildén et al. [55] | Descriptive: questionnaire | All areas of care; 408 Nurses (51% response rate); Finland | Advocate: 95% nurses felt it was their responsibility to talk to MD about a patient's LW if it was not being respected. 50% reported that they participated in DNR discussions with families when patient unable to communicate. |
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| Hiltunen et al. [11] | Narrative content analysis | 5 hospitals; 23 nurse facilitators; US | Supporter: “Midwife-one who understands the process unfolding and can be present, with the family” page 132. Skill, patience, being present and sharing the experience with the family. Outcomes: move the family along in the decision making process. |
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| Ho et al. [52] | Survey | ICU, NICU, peds; 611 nurses; New Zealand | Advocate: 78% of participants said they were “actively involved” in EOL decisions. 42–54% actively discussed EOL issues with patient or family. Actively involved defined as “active discussion with patients, families, or physicians in the decisions to withdraw life support or withhold cardiopulmonary resuscitation.” |
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| Hov et al. [7] | Qualitative: phenomenology | ICU; 14 nurses; Norway | Supporter: presence, see changes, holistic. Advocate: interpret what is going on with the patient and give their interpretation to the physicians “using different strategies” (these strategies not described). Help physician understand the suffering. Go to physician meetings and express their opinion. |
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| Hsieh and Shannon [22] | Qualitative content analysis | ICU; 51 family meetings; US | Advocate: actively participate in family meeting. Relate to family what patient said before becoming unconscious. (very eloquent description of what patient wanted given by a nurse in a family meeting). Ask what pt. would want. |
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| Jezewski and Finnell [32] | Grounded theory | Acute oncology settings; 21 nurses; US (New York) | Information broker: be a third party to mediate among family members or between family and providers. Tell the physician what patient's wishes are. Supporter: be sensitive to family members' emotions. Listen, caring, assess emotional readiness. Advocate: help patient and family understand what DNR means. Be sure they are informed and support their decisions. |
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| Kennard [23] | Descriptive | Acute care; 1427 patients/surrogates, 696 nurses; 5 settings; US | Information broker: 95% reported that they gave information to the medical team about patient's medical status
Advocate: on day three, 67% had no knowledge of their patient’s preferences. 53% reported not advocating for patient preferences. 17% discussed prognosis with patients, 32% offered recommendations to the family or patient. 58% discussed options and educated about the treatments. Outcomes: 50% of patients or surrogates thought conversations with nurses were “very much” or “quite a bit” helpful in their decision making. 25% felt that nurses preferences had “quite a bit” or “very much” influence on their decision. |
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| Kirchhoff et al. [46] | Cross sectional qualitative descriptive | ICU; 21 nurses; US | Supporter: introduce the nurse coming in on next shift, show confidence in that nurse, facilitate shift change, and show you care. Allow time to accept, facilitate, allow family to participate in care, make time and space for family rituals. Advocate: nurses believed it is physician’s responsibility to give family information on prognosis initially. Fear of taking away hope, do not like to see families being given false hope. Families “look to nurse for “real” answer.” page 39 |
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| Latour et al. [21] | Descriptive correlational using survey | ICU; 62 nurses; UK, Netherlands, Italy, Norway, Sweden | ADVOCATE: 75% reported active involvement in decision. 39% reported being asked to participate by MD. 64% said they had initiated discussions w MD, 52% said they were not actively involved in discussions w physician colleagues. |
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| Liaschenko et al. [8] | Qualitative: focus group | ICU; 27 nurses; US | Information broker: “Nurses are nodal points for exchange of information” page 227 nurses obtain info from physicians, families and synthesize the info to develop a comprehensive picture of what is happening. Supporter: supporting journey. Build trust. Advocate: helped families see the “big picture,” including QOL and continued deterioration. Tell families about consequences of interventions. “what are the chances of improving their quality of life.” Outcomes: one nurse expressed a belief that they can have a significant impact on the outcomes and the need to be sure they are advocating for the patient. |
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| Limerick [29] | Grounded theory | ICU; 4 hospitals in a system, 17 surrogate decision-makers; US (Texas) | Information broker: provide information Supporter: support, caring, sensitive, build trusting relationships. Advocate: help family member to understand what is happening with the patient and recognize futility. Outcomes: help move family along in the decision making process by helping to build trust and help family member to understand the futility of the situation. |
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| Lind et al. [30] | Grounded theory | ICU; 3 University hospitals, one district hospital, 27 family members; Norway | Information broker: nurse communicated about everyday issues not about prognosis or decision making. Nurses were vague and reluctant to give information. Some reported that the nurse did give information and was clear. Those were the families who reported shared decision making. Nurses rarely involved in family meetings, nurses did not answer questions. Outcomes: shared decision making with increased involvement of nurse seemed to improve family members understanding of prognosis and they were more prepared to cope with death. |
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| McMillen [18] | Grounded theory | ICU; 8 nurses; UK | Information broker: provide medical team with information about families’ viewpoint and about clinical status of patient. Supporter: support the family, prepare them for the bad news, find out what is important to them, how they see the situation. Help family with practical needs. Also attend to families' practical needs. Advocate: drop hints to physician. Question physician. |
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| Murphy et al. [13] | Content analysis | 5 hospitals; 20 nurses; US | Information broker: educate about the disease process. Facilitate communication between family and staff. Supporter: presence, listening, empathy, explaining, clarifying, storytelling, and life paper, assessing readiness. Advocate: discuss prognosis with family members and expected outcomes of treatment. Outcomes: nurses expressed sense that families were burdened by being offered futile care. |
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| Reckling [24] | Multiple case study. | ICU; 16 family members, 29 health care professionals including 15 Nurses; US | Advocate: nurses did not participate in the initial discussions about withdrawal but did talk to families once the physician had brought it up. Of the 15 nurses observed, only 3 took a strong advocate role, the other 12 were either moderate advocate or neutral. |
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| Robichaux and Clark [35] | Qualitative: narrative analysis | ICU; 21 nurses; US | Information broker: educate, consult other services, such as requesting an ethics consult. Supporter: establish trust, assess when is the right time to initiate discussions. Advocate: advocate, speak up for patient even if it risks being reprimanded. One nurse spoke in front of family when physician was not being honest. One refused to carry out orders that were against patients expressed wishes. Help family to reframe their hope. Speaking to family on patient's behalf. Help family to understand the situation, for example, ventilator does not help a person feel better. Show family what it is like (let them see suctioning, decubiti, etc.). One nurse told a mother, “we're torturing him.” page 487 |
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| Scherer et al. [54] | Descriptive correlational using survey | ICU; 210 nurses (21% response rate); US | Advocate: 96% had helped inform patients or families of condition and treatment options. 98% counseled patients or families about AD, 85% initiated discussion of AD. |
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| Silén et al. [9] | Qualitative content analysis | Dialysis units and nephrology wards; 13 nurses; Sweden | Supporter: support physicians, be available for patients and physicians to talk to. Advocate: question physicians while at the same time recognizing the difficulty of the physicians’ position. Information broker: convey information, for example, tell physician about patient wishes and any questions that families have raised. Outcomes: belief that the family may be burdened by the responsibility and feel they “held the patient's life in their hands.” page 168. |
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| Sorensen and Iedema [45] | Grounded theory | ICU; 30 nurses; Australia | Information broker: nurse feels caught between family and physician. Family wants to talk to physician, nurse asks physician to talk to family, and physician says he/she has already talked to them Supporter: let family express their feelings, be sensitive to feelings. Establish a rapport, prepare families. Advocate: some of the nurses in study did not advocate for patient and did not give any professional opinion to the physician about the appropriateness of continuing aggressive care. Others talked to MD and told them of patient's preference to stop treatment. Nurse expressed putting in his/her “five cent’s worth” at the family meeting. Nurses often left out of meetings. Importance of ongoing discussions of the plan of care and what the next steps would be if treatment does not work. |
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| Sorensen and Iedema [25] | Ethnographic | ICU; Tertiary care hospital, 13 case studies, 15 family conferences, 29 focus groups with nurses, interviews with medical and nursing management; Australia (Syndey) | Information broker: provide information about patients' emotional and psychological status. Nurses contribute knowledge about psych and emotional issues to the team. What seemed to be missing was “a therapeutic engagement” of the nurse with the patient and family. Advocate: nurses see suffering but may be reluctant to speak frankly to family. |
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| Thompson et al. [49] | Grounded theory | Acute care; 2 hospitals, 10 nurses; Canada | Information broker: empower by giving information, mediate, clarify information given by MD. Advocate: assess what patient/family understand, educate about disease process and possible outcomes, communicate honestly, cue patient/family and physician about signs of poor prognosis, push for DNR order from MD, encourage family to consider what pt. would want. Outcomes: “Smooth lane change” leads to collaborative care plan, appropriate level of care, ability to address symptoms, psychological support. Failure to do so leads to false hope for patient/family, moral distress for nurses, inability for nurse to be honest with patient/family, family may question why patient is not getting better and become angry. |
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| Todd et al. [36] | Exploratory mixed methods design | Acute care; 2 teaching hospitals, 17 Acute Care Nurses; Canada | Advocate: initiator, 76% used the term advocate. One nurse reported nurses argued with physician about a decision to place PEG where patient died soon after. Nurses do not always actively seek to be part of decision making process. Information broker: educator, teacher, provided information and answered questions. Liaison with physician or mediator. Nurses encouraged patients to talk to their physician and ask questions. Supporter: support provider. |
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| Verhaeghe et al. [31] | Grounded theory | ICU; 1 University, 1 regional hospital, 22 family members; Belgium | Information broker: family identifies the nurse who gives adequate information. Some nurses give information that leads to false hope. For example, if the nurses says his BP is stable, family may interpret that as good, when really the patient is doing much worse. Supporter: caring, telling little details about daily care or patient. Advocate: inform family about how the patient's condition is progressing, are things “moving in the right direction.” More than just facts, but interpretation of facts. Outcomes: families may misinterpret facts as a good prognostic sign. The way the information is given to the family affects their ability to come to terms with the ICU experience and dying process. |
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| Viney [26] | Phenomenology | ICU; 5 physicians 5 nurses; UK | Information broker: relay information between family and physicians. Speak to physician on behalf of family, “put in two pennyworth.” Supporter: empathy, prepare family for withdrawal. Advocate: game playing, indirectly influencing the physician. Not actively involved in the decision making process |
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| Weber et al. [50] | Grounded theory | ICU; 3 ICUs in 1 hospital, 10 Physicians 23 Nurses; US | Advocate: advocate to physicians and to family. Use results of prognostic tool to initiate EOL discussions with physician and family. |
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| Wise [51] | Mixed methods | Acute Care; 3 hospitals, 1 6 nurses (Phase 1), 100 nurses (Phase 2); US (Florida) | Advocate: intervene with physician, explain things to family, help them see futility, start EOL discussions. Get help and advice from more confident or experienced nurses. Nurses reported “standing up” to the physicians to advocate for patients. |
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| Zaforteza et al. [41] | Qualitative | ICU; 14 observations, 6 nurse interviews; Spain | Information broker: gave meaningless information, such as “he/she has had a good night,” or “he/she has slept more or less.” Supporter: nurses ignored family members, did not introduce themselves but focused on technical activities. Nurses did not try to establish a relationship with the families. Advocate: did not give any interpretations about how patient is doing. |
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| Zomorodi and Lynn [43] | Qualitative descriptive | ICU; 9 nurses; US | Information broker: ask physician to speak to the family. Supporter: calm, flexible, communicate with others well, pain and symptom management. Nurse sets own opinion aside and allows family to make decision. When decision made to withdraw, nurse takes a step back to allow family time with patient. One nurse described allowing a family member to get into the bed and lay down beside a dying relative. Advocate: when asked what would you do, answer “what do you think the patient would want.” Talk to physician and be frank about assessment that care is futile and should change direction. Be assertive with physicians. |
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