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.
Background
To develop an electronic resource, called Communicating Health Alternatives Tool (CHAT) that was compatible with hospital medical records software to facilitate preliminary patient-centered decision-making across health settings for frail older adults with progressive chronic disease.
Methods
Mixed methods including literature review; user-directed specifications; web-based interface development with authentication, authorisation, and secure cloud services; clinician and consumer co-design, iterative user testing; and developer integration of feedback.
Results
An internet-based conversation guide to facilitate clinician-led advance care planning was co-developed covering screening for short-term risk of death, patient values and preferences, and treatment choices for chronic kidney disease and dementia. Printed summary of such discussion could be used to begin the process in hospital or community health services. Clinicians, patients, and caregivers were generally accepting of its contents and format and supported its use in routine clinical practice.
Conclusion
CHAT is anticipated to enhance clinicians’ confidence in initiating these sensitive but important discussions with their older patients near end of life. CHAT is available to health services for implementation in effectiveness trials of patient-centered care to determine whether the interaction and documentation leads to formal decision-making, goal-concordant care, and subsequent reduction of unwanted treatments at the end of life.
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