Albany physician Dr Kirsten Auret discusses her team’s research into advanced care planning.
I’m a physician living in Albany, which means I may look after a person from first presentation of nasty symptoms, supporting their disease management to maximise quality of life and on to providing palliative care at the end of their life.
This kind of practice has inevitably meant some of my patients have experienced medical crises before communicating what they would have us do in such circumstances and suffering unnecessarily.
These clinical experiences dovetailed with a growing interest in advance care planning (ACP) and the passage of Western Australian legislation in 2010 that strengthened the law around end-of-life care provision. At about that time, my colleague, psychologist-researcher, Dr Craig Sinclair, joined me in the Rural Clinical School of WA. Hence the start our small team’s wonderful five years of researching ACP in the Great Southern.
Going through the steps
We have come to regard ACP as a health behaviour where patients may be more or less ready to engage in such types of conversations and documentation based on their particular illness experiences, their culture and their social circumstances. Framing ACP, like we do smoking cessation, with a change model in which people may be in precontemplation, contemplation, preparation, action or maintenance phases has been supported by our discussions with elderly residential care patients, those with cancer and those cared for in general practice.
A simple prompt to consider ACP coming from a trusted doctor, especially following a change in health such as a new diagnosis or a recent hospitalisation seems to be a quick way of moving some patients into contemplation or action. Equally there are a minority for whom ACP is really ‘not for them’ and they are unlikely to ever engage in the process, rather preferring to leave management decisions at times when they may be unable to speak for themselves to the family or doctors.
Our work in the Noongar community and with Dutch and Italian migrants suggest that ACP is a safe topic across these cultural groups but there may be differences in how people would like these discussions to occur and how willing they are to express and document individual preferences.
Cultural and social factors
As an example, the Noongar people we spoke with said that it was important that ACP was understood as being something “for all Australians” and that such conversations were first raised in safe, community-based settings, rather than when a person was acutely unwell and perhaps isolated in hospital.
Exploring how ACP best happens in rural general practice and hospitals shows us that there is keen interest in ACP and that most healthcare professionals in our region feel that the GP is a central facilitator of the process. Interestingly there are quite clear gaps between discipline groups in regards to who does what.
No one seems to feel it is his or her role to ensure documentation is appropriately distributed or intermittently reviewed. Something that clinical teams still need to thrash out in their own contexts!
The Albany hospital has been a great collaborator and, through working with frontline clerical staff, we have successfully created a locally accessible electronic register of ACP documents, which means it is much more likely that a patient’s plan will be available to the treating doctor in a timely manner.
We are now seeing that engagement with clinicians about ACP has gradually resulted in changed culture and practice, with ACPs being done earlier and with patients themselves participating (rather than just their family) and the content of ACP documents being referenced in the clinical decision-making record.
Negotiating through conflict
At times, ACP can be a tricky process to negotiate, especially if there is family conflict, and we’ve found some things that help.
The first is that some of the skill set used by professional mediators in interest-based negotiation can be used successfully in the clinical context. This supplements the skills we are taught about breaking bad news and running family meetings.
The Respecting Patient Choices model of using a trained nurse facilitator to provide time and practical assistance to patients and families in completing ACP does work in our setting and has been particularly successful in a recent project based in rural general practice and in the tertiary hospital setting.
Helping a vulnerable cohort
We are now completing a three-year study in partnership with Dr Fraser Brims’ group at SCGH Respiratory Unit looking at ACP in severe respiratory disease. The ‘surprise question’ was asking if the doctor would be surprised if a particular person died within the next 12 months. It has helped us identify a very sick cohort with over 30% not living out a year.
We have clearly demonstrated that the nurse facilitation model does increase uptake of ACP in such patients. We look forward to reporting on the health-related quality of life, satisfaction with care and actual end-of-life care experienced by our participants. As part of this work, we will also be able to explore the health economic impact of ACP within our state health system.
Important results are anticipated!