Nursing patients with chronic critical illness and their families: a qualitative study

Background: chronic critical illness (CCI) is a complex syndrome with a high risk of dying in hospital. Intensive care unit nurses are well-positioned to lead conversations integrating palliative and end-of-life care, yet have reported limited involvement. Aim: To generate further understanding of nurses' experiences of patients with CCI and their families. Design and methods: This qualitative study followed Thorne's interpretive description methods. In 2012, 16 intensive care unit nurses from one academic hospital participated in interviews. Results: Our primary theme was that of internal tension generated through participants' knowledge of patients' anticipated and protracted dying, while wanting to shield families from suffering. This internal tension resulted from responsibilities to preserve hope for patients and families, while at the same time wanting to provide them prognostic information. Participants experienced challenges of: (i) preserving family trust, (ii) determining when and how to engage families in discussions and (iii) providing possibilities of a 'good' death. A secondary theme described constraints to acting on their insights because of interprofessional team dynamics or limited communication, within the team and with the family. Conclusion and relevance to clinical practice: Internal tension, as experienced by participants reflects the challenges of transition from acute to palliation and end-of-life care, made more complex in CCI, because of its poorly defined terminal stage. Nurses' ability to manage the complex process of supporting hope while gradually providing information to build family understanding of CCI highlights their central role in facilitating what and how prognostic information is given, while managing the emotional implications and family response. To better support nurses do this, we advocate for formal structures enabling nurses to participate in decision-making regarding timing of transitions using palliation and end-of-life care.