The International Society of Advance Care Planning and End of Life Care (ACPEL) Conference began today, with addresses from leading practitioners and researchers from across the world. Set in Munich, Germany, the opening panel discussion examined factors contributing to successful advance care planning implementation, and discussed how implementation might progress in European countries.
The panel discussed a range of issues, including the value and importance of consumer involvement in co-designing ACP resources, and the ethics of conducting randomised controlled trials to study ACP, an intervention that some might consider a basic patient right in healthcare. An overarching theme emerging from these discussions was that there is something in the concept of ACP that goes to the core of medicine, healthcare and clinical relationships. That ACP has a disruptive and revolutionary quality that can change the nature of how we deliver and receive healthcare, not just improve the quality of end of life care.
Along with this discussion came the inevitable practicalities – whose task is this? When is it done? The resounding consensus from the panel is that ACP is everyone’s business, and should infuse everything we do in healthcare. From this perspective, ACP is to be seen as something much bigger than just preferences for end of life care. Instead it is about the ongoing, evolving and deepening discussions that clarify values, goals, expectations and preferences – negotiated in an environment of shared decision making.
Having established the breadth of ACP, and its relevance across so many areas of healthcare, leads one to question the ‘partnership’ between ACP and palliative care. The discipline of palliative care, and the specialised skills of palliative care practitioners, may lend themselves to high quality ACP discussions. However the danger in one specialty group taking ‘ownership’ of a process as broad as ACP is simply that no one specialty can undertake the volume of work required, or reach all of the patients for whom it may be beneficial. Further, there is a danger that ACP will be wrongly seen in a narrow sense, as being related only to end of life care. This could make it harder to promote the benefits to patients, families and the broader community.
Leigh Manson shared insights from the highly effective work underway to implement ACP across New Zealand. Far from situating advance care planning with any particular group, the strategy here has been to provide broad-based education to all health professionals. In addition, consumer groups have been educated and empowered to take their own messages into their communities, using co-designed ACP resources and sharing their own personal stories. Stories, Leigh said, have the capacity to resonate with individuals and generate community change.
With this said, I would argue that it is still important to work towards refining and defining the concept of ACP, so that we have a shared language around its use. Perhaps more importantly, in a broad and complex process like ACP, we might expect that it will incorporate a range of different components. Understanding which of these components are effective in improving outcomes for which patients, and under which circumstances, might be the next important direction for ACP research.
The ACPEL 2015 conference runs until Friday 11th September. To keep in touch with further news from the conference follow #ACPEL2015 on twitter.
Agreed! Love the title. I was just saying to one of our HPM fellows in clinic yesterday that ACP is really for more upstream discussions. If you are very sick and on the verge of a potential crisis/hospitalization then you are not doing any planning in advance, you are planning for right now and you need a more nuanced conversation about your current medical condition with your clinicians.
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Absolutely! I was at a meeting last week talking about ACP and the Chair asked me to also talk about end of life care plans. I kept saying (no doubt in a very annoying way!) that I did want to talk about end of life care, but it was a separate issue to ACP so had we finished with that first. It was funny because he kept jumping between the two issues, but by the end of the meeting was saying, “Yes I KNOW they are separate issues…. but..”
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