ABSTRACT
BACKGROUND: Evidence suggests that there is a gap in advance care planning (ACP) completion between vulnerable and disadvantaged populations compared with the general population. This review seeks to identify tools, guidelines or frameworks that have been used to support ACP interventions with vulnerable and disadvantaged adult populations as well as their experiences and outcomes with them. The findings will inform practice in ACP programmes. METHODS: A systematic search of six databases from 1 January 2010 to 30 March 2022 was conducted to identify original peer-reviewed research that used ACP interventions via tools, guidelines or frameworks with vulnerable and disadvantaged adult populations and reported qualitative findings. A narrative synthesis was conducted. RESULTS: Eighteen studies met the inclusion criteria. Relatives, caregivers or substitute decision-makers were included in eight studies. SETTINGS: hospital outpatient clinics (N=7), community settings (N=7), nursing homes (N=2), prison (N=1) and hospital (N=1). A variety of ACP tools, guidelines or frameworks were identified; however, the facilitator's skills and approach in delivering the intervention appeared to be as important as the intervention itself. Participants indicated mixed experiences, some positive, some negative and four themes emerged: uncertainty, trust, culture and decision-making behaviour. The most common descriptors relating to these themes were prognosis uncertainty, poor end-of-life communication and the importance of building trust. CONCLUSION: The findings indicate that ACP communication could be improved. ACP conversations should incorporate a holistic and personalised approach to optimise efficacy. Facilitators should be equipped with the necessary skills, tools and information needed to assist ACP decision-making.
ABSTRACT
PURPOSE: While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes. METHODS: This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants' existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. RESULTS: Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants' attitudes and their written document congruence were limited, but advance care planning was seen as helpful. CONCLUSIONS: This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.
