Advance care planning (ACP) should include discussion with the patient (while they still have capacity) as to their wishes for future healthcare provision. Originating from the United States and sometimes previously referred to as a ‘living will’, advanced care planning has been in evidence in the United Kingdom (UK) since the mid–1980s.
Current guidelines in the UK recommend that patients with a life-limiting illness should be offered ACP but all too frequently there seem to be obstacles preventing the realisation of these plans. Knowledge about ACP is becoming more important for ambulance crews as they increasingly encounter patients with individual plans in place.
This qualitative study set out to explore a wide range of professionals' (both clinical and non-clinical) experiences and opinions about ACP in the clinical areas of dementia and palliative care.
Undertaken in the North East of England between September 2009 and January 2011, purposive sampling was used to recruit participants from palliative care, dementia care, social services, legal professions, the voluntary sector, primary care and the ambulance service.
In total 95 people participated in this study: 77 in focus groups and 18 in individual interviews allowing exploration of topics such as participants' experiences of ACP; enablers and barriers to the use of ACP; education and training related to ACP.
Although no specific detail is given about the characteristics of participants, 15 of the individuals who participated in focus groups were identified as coming from the ambulance service.
Through an iterative process of thematic analysis, three key areas emerged: value and usefulness of ACP (including delivering patient choice and achieving desired outcomes); defining ACP and associated legal issues; practicalities of implementing ACP (including roles and responsibilities; documentation; timing; financial costs of legal processes such as lasting power of attorney).
In general, the palliative care specialists, community nurses and solicitors had greater experience in this area and appeared more confident than other participants, with general practitioners and ambulance staff expressing uncertainty about several aspects of ACP implementation.
A mixed picture emerged from the data with the researchers reporting that generally participants thought ACP was good in theory but, at the same time, they state ‘although some participants were positive about implementing ACP, most were not convinced of its value and usefulness to patients or health-care providers and expressed concerns about their ability to actually deliver patient choice’.
One area of ACP that ambulance staff identified as challenging is the use of an advance directive for refusal of treatment (ADRT) such as ‘Do Not Resuscitate’/’Do Not Hospitalise’ orders. There were concerns about management of specific conflicts such as if the patient's wishes change over time, or, alternatively, if the relatives want to overrule the ADRT. Many participants were unclear on the boundaries of ACP especially when it came to the legal status of core components—in particular ADRTs.
Further confusion existed around professional roles and responsibilities in ACP especially in relation to timing including when to introduce the concept of ACP to the patient, as well as when to implement the plan itself, particularly in the area of dementia care where the illness trajectory is so unpredictable.
From their findings, the authors conclude with useful recommendations for practice for all professions but, in particular, suggest that community based staff such as ambulance staff might benefit from additional education and practical scenario-based training to enable them to become better equipped to manage decision-making in these types of complex situations.
This is a timely piece of research especially with policy initiatives heralding ACP as best practice in palliative and dementia care. Participants identified several barriers to achieving ACP and the researchers highlight a need for additional research to include further exploration of healthcare professionals' concerns (raised in this study) as to the value and usefulness of ACP. Clearly future research should include other key stakeholders in this process—namely patients and their families.