Patient experiences of nurse-facilitated advance care planning in a general practice setting: a qualitative study

Abstract

Background Advance care planning (ACP) can offer benefits to patients and their families, especially when delivered in outpatient settings, but uptake remains low. Common barriers for health professionals include a perceived lack of time and adequate training, experience, and confidence in conducting ACP. Patient-reported barriers include a lack of awareness of ACP or discomfort initiating or engaging in discussions about end-of-life. Methods We aimed to explore patients’ perspectives of an ACP intervention designed to address common barriers to uptake in the general practice setting. We provided training and support to doctors and general practice nurses (GPNs) to initiate and lead ACP discussions at their respective practices (2014 to 2015). Following the intervention, we conducted interviews with patients to explore their experience of engaging in ACP in the general practice setting. Thematic analysis was used to inductively code transcripts and identify key themes from semi-structured interviews with patients. Results Six major themes relating to patient experiences of GPN-facilitated ACP were identified: working through ideas, therapeutic relationship with nurses, significance of making wishes known, protecting family from burden, autonomy in decision-making, and challenges of family communication. The patients valued the opportunity to speak about issues that are important to them with the GPN who they found to be compassionate and caring. The patients felt that ACP would lead to significant benefits not only to themselves but also for their family. Despite encouragement to involve other family members, most patients attended the ACP discussions alone or as a couple; many did not see the relevance of their family being involved in the discussions. Some patients felt uncomfortable or reluctant in communicating the results of their discussion with their family. Conclusions With adequate training and support, GPNs are able to initiate and facilitate ACP conversations with patients. Their involvement in ACP can have significant benefits for patients. Psychosocial and relational elements of care are critical to patient satisfaction. Our findings show that some patients may feel uncomfortable or reluctant to communicate the results of their ACP discussions with their family. A future larger study is required to verify the findings of this pilot study.

Barriers, enablers and initiatives for uptake of advance care planning in general practice: a systematic review and critical interpretive synthesis

“…When considering barriers to ACP in general practice from an individual perspective, there were very few general practice studies directly involving patients 14 39–43. A few studies described patient experience by proxy through opinions obtained from GPs.…”

“…Attitudes of individuals about ACP were reported to vary widely. Studies reported the perceived irrelevance of ACP was a barrier, with the relevance of ACP described with ambivalence when associated with an existing state of wellness or absence of terminal diagnoses 13 14…”

“…Poor family relationships were reported as a barrier for some. Not wanting family involved, or not wanting to burden family members was also a consideration 14. Difficulty conversing with family about ACP and the need for assistance to achieve these conversations was raised.…”

“…There appear to be significant differences in how ACP is conceptualised in Australia,11 and uncertainty about where in the system responsibility lies for initiating an advance care plan. Many studies suggest primary care is optimal for initiation of discussions,12–15 though a 2019 multicentre audit determined ACP in general practice to be as low as 3% 16…”

General practice physicians’ and nurses’ self-reported multidisciplinary end-of-life care: a systematic review

“…59 Once barriers are overcome, GPNs can play a beneficial role in undertaking advanced care planning. 60 GPNs already play a significant role in co-ordinating and working with multidisciplinary teams, and providing support for people with advanced chronic disease and frailty. [61][62][63][64] An expanding role for GPNs to be involved in ACP is being explored.…”