Death and preferred end of life care can be a difficult discussion for any individual living with terminal illness. However, when that conversation is with someone diagnosed with dementia – and therefore, may not have the mental capacity to plan and organise for the future – it can become a lot more challenging.
Advanced Care Planning (ACP) is instrumental in ensuring a patient with dementia – and any other individual living with a life-limiting illness – has the right care and support in place to enable them to live their last days in peace and dignity. Yet, despite its obvious benefits, the responsibility of ACP doesn’t directly lie with one specific healthcare professional. Instead, it is up to any healthcare professional to raise the conversation when they think it is most appropriate for the individual.
Whilst in theory, this solution seems ideal as it means conversations around end of life care may be timed to cause as little upset as possible, in practice, it usually means these conversations are considered far too late or not at all. For patients with dementia in particular, this can prove difficult due to the unpredictable illness trajectory and loss of capacity. However, many patients may still be capable of making decisions at some point. It is therefore essential that ACP is actively considered throughout the illness trajectory, to ensure patients are supported with planning for their end of life care.
What are the current barriers?
Despite Government guidelines that healthcare professionals should be offering ACP, they are not specific in who should take on the role. Dementia patients will typically see a large number of healthcare professionals throughout their illness but none will have direct responsibility to discuss ACP. Therefore it’s easy to see how it could get missed off the agenda. Similarly, ACP is rarely discussed in patient review meetings early in a patient’s illness, which again can significantly jeopardise its place on the to-do list.
Another key factor that discourages healthcare professionals engaging in ACP is lack of training, in particular in advanced communication skills. End of life care is a sensitive and difficult subject and knowing when and how to have these conversations is crucial. Without this training many healthcare professionals will not have the skills or confidence to engage in these often complex discussions.
A further obstacle is a society-wide issue – there is reluctance in the UK to talk about death, dying and bereavement. Death is a taboo subject and isn’t something we normally speak about openly, not even to our loved ones and friends. For healthcare professionals, death is also often viewed as a ‘failure’, especially as we are so dedicated to prolonging life.
So, what needs to be done?
Without official guidance from the Government or regulatory bodies, it is difficult to designate the role of ACP to one professional group. Amongst healthcare professionals, there are differing opinions as to whether it should be the role of one group, many groups or even a new role. However, what may be beneficial now is to encourage GPs to become more responsive to the concept of ACP, as they tend to be the one constant healthcare professional for this group of patients.
To assist GPs and other professionals, the Gold Standard Framework could be more instrumental in focusing on ACP with dementia patients early in the illness trajectory. This will ensure that ACP is being offered when patients can be supported with decision making, enabling them to express their wishes for the future and avoiding interventions that would be considered futile and distressing. In addition, the use of more appropriate and accessible tools - designed specifically for ACP and patients with dementia - would be beneficial. This would help empower professionals and give them confidence to engage in ACP with patients.
Better collaboration between dementia and palliative care specialists could also improve ACP, and encouraging joint training programmes would enable the sharing of expertise. It is becoming more apparent that dementia specialists need to have ACP training to help them utilise key palliative care principles, whilst palliative care professionals need to have a greater understanding about the course of dementia.
Finally, we need to start talking about death and dying more – and encouraging other people to do so. Initiatives, such as ‘Dying Matters’ and ‘Death Cafes’, are starting to change people’s attitudes in a positive way but it essential that more people get involved. By spreading the word and helping to break down the taboo, we can hopefully get more people discussing dying and the type of care they would like to receive at the end of life.
ACP with patients with dementia is clearly a complex and challenging issue. However, by introducing a more coordinated and collaborative process, addressing barriers that make engaging in the process difficult, and talking about death and end of life care more, healthcare professionals can be confident that more patients with dementia will die with dignity.
Carolyn Spencer is a clinical nurse specialist at Birmingham St Mary’s Hospice. She recently conducted a research paper on ‘Advanced Care Planning with Dementia Patients’.