Continuing our occasional series of posts from members of the ACTION Consortium about their European study that aims to investigate how to help people with advanced cancer to have a conversation about preferences and wishes.
Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK, and a member of the ACTION Consortium, says it’s time to start talking.
The purpose of this blog post is to open up debate about the timing of advance care planning (ACP) conversations. The one consistent message that I hear is that there is no perfect time to conduct an ACP conversation. Almost invariably, health professionals are concerned about ACP conversations being either too early or too late. So when is the ‘right time’? And when is it the right time for whom – health professional, patient or family member? In this context, ACP is defined as “a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. […] It is recommended that with the individual’s agreement this discussion is documented, regularly reviewed, and communicated to key persons involved in their care.”
ACP is increasingly being recommended as a way to capture the preferences and wishes of patients about treatment and end-of-life care, in case they lose the capacity to express their views. It is predicated on the assumption that there is open disclosure of diagnosis and prognosis and that patients are able and willing to contemplate their own demise. However, these are difficult conversations to have for all parties involved, as we have discovered within a European Commission funded project called ACTION. The project involves an international cluster randomised clinical trial testing a modified version of the ‘Respecting Choices’ ACP conversation with patients who have either advanced lung or colorectal cancer (Rietjens et al 2016). Although we did not specifically investigate this, one of the emerging issues is about correct ‘timing’ of ACP conversations. Let us consider some of the arguments put forward:
Commonly there are concerns about raising the topic of ACP when patients are at early stages of treatment because it might mean they have less ‘faith’ or confidence in the treatment options offered. Likewise, there are concerns when patients are feeling well either because they have not yet started treatment or because they have recovered from the immediate effects of surgery or chemotherapy. Health professionals have fears that discussing ACP will be seen as disheartening and discouraging, and therefore it should be left to later in the disease process. In many conditions, there is real prognostic uncertainty so health professionals may perceive that there is no urgency for undertaking ACP conversations.
Equally, often there are concerns that offering ACP conversations comes too late because the patient is imminently dying and therefore there are few real choices to be made. Once again, these are concerns, driven by compassion, that inviting a very ill patient to contemplate end-of-life care, may increase their distress and those of their family members. Likewise, symptom burden such as breathlessness and fatigue may make it difficult for patients to concentrate on expressing their wishes.
Therefore the window of opportunity appears to get smaller and smaller – in that brief moment between being ‘too early’ and ‘too late’. One way forward is to gradually raise the topic – explaining what ACP conversations are and what they are not. For example, it is important to dispel fears that the preferences cannot be changed, or that they are a strategy to save health service money. The timing of ACP conversations then becomes at the discretion of the patient, and for some, the time might never be right. While those patients, who in all probability are thinking about the impact and likely outcomes of the disease, may welcome an opportunity to talk through their preferences and wishes, even if they choose not to formalise them in an advance statement or directive.
Planning for the worst, while hoping for the best, may be the right way forward. What do you think?
Please share your comments below. With so many different cultural and legal factors involved in different countries in Europe and beyond, this could be the start of a great debate.
National End of Life Care Programme. Advance Care Planning: A Guide for Health and Social Care Staff, 2nd ed. Leicester. 2008.
Rietjens J.A, et al (2016) Advance care planning – a multicentre cluster randomised clinical trial: the research protocol of the ACTION study BMC Cancer 16:264 DOI 10.1186/s12885-016-2298-x.
Read more posts from the ACTION Consortium on the EAPC Blog.