Abstract
Introduction
National guidelines suggest that patients in the last year of life should be identified, their prognosis and future care options discussed, with advance care planning (ACP) recorded. Goals-of-care should be discussed with hospitalised patients at risk of deteriorating or with life-limiting conditions. The stated purpose of ACP and goals-of-care discussions is to increase goal-concordant care (i.e. patients receiving treatments they would wish to receive, and not receiving those they would not want). This literature review investigates the evidence-base for these policies and outcomes.
Review question
What is the evidence for goals-of-care and ACP discussions with hospitalised frail older people?
Methods
Systematic literature review and narrative synthesis. Electronic search of MEDLINE, CINAHL, ASSIA, PsycINFO, and Embase databases from January 1990 to September 2017. An updated search until May 2019 is currently underway.
Results
Of 8077 unique articles identified, 17 met inclusion criteria. There is no evidence that goals-of-care discussions lead to increased goal-concordant care; there is observational evidence that they increase the accuracy of documented preferences. Currently, rates of goals-of-care discussions are variable (38-72%), and there is poor concordance between patients’ actual and documented preferences, with agreement in only 31-33% of cases.
Present rates of ACP are very low (0-3%), with mixed evidence for benefits of ACP. One single-centre randomised controlled trial suggests ACP improves outcomes for patients who die within 6 months of discharge, including increased goal-concordant care and reduced family distress.
There is very limited evidence concerning patients’ and family members’ experiences of these discussions, their reasons for wishing (or not) to participate in discussions, or their perceptions of the important outcomes. Most (80%) patients would like to be involved in decisions about their care; 48% consider these conversations very important. The views and experiences of healthcare professionals have been little studied.
Conclusions
The asserted aim of goals-of-care and ACP discussions is to increase goal-concordant care; the extent to which this reflects patients’ priorities is unknown. In younger patient populations, while 40% of patients consider goal-concordant care the most important outcome, one third of patients consider family-related outcomes to be more important. Further research is needed to understand the perspectives of frail older patients, their families and clinicians, in order to make these discussions and subsequent care truly patient-centred.
‘We need a physician who is a human being too’: exploration of barriers and facilitators for hospitalised palliative patients and their families to discuss advance care planning
