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.