The Vortex: Families’ Experiences With Death in the Intensive Care Unit

Abstract

• Background Lack of communication from healthcare providers contributes to the anxiety and distress reported by patients’ families after a patient’s death in the intensive care unit.• Objective To obtain a detailed picture of the experiences of family members during the hospitalization and death of a loved one in the intensive care unit.• Methods A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate.• Results The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members’ best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients’ condition and reactions. Although some participants were satisfied with this information, they wished for more detailed explanations of procedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, and family decisions honored.• Conclusions Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient’s suffering pervade families’ end-of-life experiences in the intensive care unit. Families’ information about the patient is often lacking or inadequate. The best antidote for families’ uncertainty is effective communication.

A Systematic Review of Satisfaction with Care at the End of Life

“…Although the overall themes were the same, different concerns were more prominent in specific situations. A focus group study evaluating intensive care 12 and an interview study of family members of patients who had died in the hospital 13 found that lack of physician availability or continuity and insufficient information and discussion of options were important concerns. An interview study of inpatient hospice patients found that feeling at home in the hospice setting, hospitality and helpfulness, confirmation of the person, the value of touch, respect, and supporting dignity and control were important.…”

A scoping review of family experience and need during end of life care in intensive care

“…Information from physicians and nurses was used by families to match against what families saw in critical care (Chamber-Evans & Carnevale 2005) to come to terms with events. However, detailed explanations of procedures and consequences was an area highlighted by families as lacking (Kirchhoff et al 2002, Fridh et al 2009). Comprehensive information was important as it acted as cues to families (Gutierrez 2012) and was significant in helping families understand events and reframe the critical illness (Swigart et al 1996).…”

“…Physical space was seen as important by families to create privacy for family discussion and decision-making. Kirchhoff et al (2002) and Fridh et al (2009) identified the need for families to be near to, or present with the family member in intensive care. In addition, a range of resources were identified by families as being helpful at this time including: speakerphones in patients rooms to allow family members to communicate with staff, unrestricted visiting, a visitor's beeper, open visiting hours (Counsell & Guin 2002, Warren 2002 and flexible car parking practices (McHale Wiegand 2006).…”

‘Viewing in slow motion’: patients', families', nurses' and doctors' perspectives on end‐of‐life care in critical care

“…While several studies have qualitatively explored the critical illness experience related to end of life (EOL), these tend to focus on others' experiences, notably nurses (Yang & McIlfatrick 2001, Halcomb et al 2004, Trovo de Arujo & De Paes Silva 2004, Badger 2005, Robichaux & Clark 2006, Bach et al 2009, Fridh et al 2009, Popejoy et al 2009, Stayt 2009, Long-Sutehall et al 2011 or sometimes families (Abbott et al 2001, Counsell & Guin 2002, Kirchhoff et al 2002, Cassell et al 2003, Evans et al 2009). Issues around decision-making predominate in these studies.…”

“…Consensus guidance has tried to deal with critical illness and EOL issues (Truog et al 2008), but the unique trajectories in cancer critical illness can create difficulties, particularly in relation to shared care between oncologists and critical care doctors. The emotional implications of EOL issues in critical care and cancer are documented for nurses (Kelly et al 2000, Stayt 2009) and families (Kirchhoff et al 2002, Evans et al 2009), which is an important issue for those carrying out EOLC. The studies described in the literature emphasise the lack of a complete picture of end-of-life care in critical care, and this study sought to explore this picture from each experience and perspective.…”