Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important

Abstract

Background:The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap.Aim and design:This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families.Data sources:Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers.Results:Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients.Conclusion:This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.

Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

“…Research on family members in acute-care settings mainly concerns problems experienced by family members, e.g., experience of patients’ symptom burden and management, communication and relationships with professional caregivers, involvement in decision making, or their own needs for care (Robinson, Gott, & Ingleton, 2014; Steinhauser, Voils, Bosworth, & Tulsky, 2015; Virdun, Luckett, Davidson, & Phillips, 2015). The tendency to focus on life-sustaining treatment may encourage a disengagement from, and diminish recognition of, the acute-care environment as a setting for EoL care (Bloomer et al, 2013; Chan et al, 2017).…”

Implementing a palliative approach in the intensive care unit: an oxymoron or a realistic possibility?

“…It is conceivable that the four most important elements of end-of-life hospital care identified by inpatients and families in a recent systematic review are also relevant to the ICU setting (Virdun et al, 2015). The patients' and their families' wishes are: effective communication; expert care; respectful and compassionate care; and trust and confidence in clinicians (Virdun et al, 2015).…”

“…It is conceivable that the four most important elements of end-of-life hospital care identified by inpatients and families in a recent systematic review are also relevant to the ICU setting (Virdun et al, 2015). The patients' and their families' wishes are: effective communication; expert care; respectful and compassionate care; and trust and confidence in clinicians (Virdun et al, 2015). Within the context of ICU, a good death is achievable when ICUs adopt the principles of a palliative approach and the ICUs team communicates with patients and families and involves them in patient-focussed end-of-life care decision-making (Fonseca et al, 2012, Cook andRocker, 2014).…”

Palliative care in hospital: Why is it so difficult?

“…Virdun et al 9 in this journal have shown in their systematic review that there is no surprise about the things that matter to dying patients and their families -effective communication, expert and kind care and perhaps really importantly, trust and confidence in those looking after them.…”

“…Palliative Medicine 29 (9) But good stories encourage us. Julie Myerson, 27 novelist, described her mother-inlaw's death: Sandwiches were eaten, there was laughter, teasing, backchat.…”