This article provides an overview of advance care planning (ACP), discusses why ACP is important, highlights the barriers to having conversations and discusses the role of the nurse in supporting patients with ACP.
Around half a million people die each year, and about three quarters of these deaths are expected (NHS Improving Quality, 2014). There is, therefore, the potential to improve how the care of people is managed in the final year, months or days of their life. The End of Life Care Strategy (Department of Health (DH), 2008) highlighted that, although individuals may have a differing opinion of what constitutes a good death, for many this would involve being treated as an individual, with respect and dignity, being free of pain and other distressing symptom, being in familiar surroundings and having close friends and family close by. However, the report goes on to suggest that, despite the fact that some people do achieve a good death, this is not the reality for many.
Reports such as the independent review of the Liverpool Care Pathway (Neuberger, 2013) and Leadership Alliance for the Care of Dying People (2014) have highlighted that, despite evidence that there are examples of good end-of-life care, there remain inconsistencies, with many patients dying in pain, distress and not in a place of their own choosing.
The Parliamentary and Health Service Ombudsman (2015) stated that a major topic for complaints about end-of-life care is communication, in particular the fact that there is not always open and clear communication between health professionals and patients, to enable patients to make their choices and wishes known in a timely manner. One of the main recommendations in the End of Life Care Strategy (DH, 2008) is that patients should have the opportunity to have their needs continuously assessed, and their wishes and preferences documented in a care plan that is available to all those—family and healthcare practitioners—who come into contact with the patient.
One way to ensure the patient receives individualised patient-centred care, which takes into considerations their wishes and preferences is to have an advance care plan.
What is an advance care plan?
ACP is a process that supports patients at any stage of health, and is a means of extending autonomy by planning for future care in the event if someone becomes unable to make their decisions or wishes known (Brinkman-Stoppelenburg et al, 2014; Izumi, 2017). In essence, it is a process of discussion about treatment and no treatment options, and recording the preferences for care of patients who in the future may lose capacity or the ability to communicate (Box 1).
ACP is a continuous process, involving many conversations with the patient and the people important to them. Box 2 summarises the relevant documentation to support an advance care plan and its implementation, namely an advance decision to refuse treatment (formerly referred to as a living will), an advance statement and a lasting power of attorney.
Why is advance care planning important?
There are a number of reasons why ACP is important, the chief being that it (Thomas and Lobo, 2011; Mannix, 2017):
However, there are barriers that can inhibit ACP conversations, and these are highlighted in Table 1.
| Patient |
|
| Capacity | Does the patient have capacity to make decisions? |
| Environment | Not conducive to sensitive conversations |
| Time | Not enough time (rushing a conversation), the wrong time (left it too late) |
| Health professionals | Lack of training, knowledge (lack of knowledge to recognise an appropriate opportunity to commence an advance care planning conversation), skills, and confidence |
| Family | Unaware of need to have conversation |
| Public awareness | Improvements in health care have changed the experience of illness, in postponing dying and offering hope and cure |
Source: Thomas and Lobo, 2011; Mannix, 2017
The role of the nurse
Conversations about a patient's health and future care are part of the remit of all health professionals, but particularly nurses, which is due to the nature of their role in caring for patients. Nurses should adopt a proactive approach in terms of ACP, in the same way that midwives support pregnant women to develop birth plans, knowing that during labour they may not be able to effectively express their preferences and wishes (Mannix, 2017; Lyons, 2018; Royal College of Physicians, 2018).
The development of ACP is underpinned by the first theme of the Nursing and Midwifery (2018)Code, ‘Prioritise people’, which states that nurses should put the interests of the patient first, ensuring that they are treated as individuals, with dignity, and that nurses should listen and respond to their preferences and concerns. This requires nurses to have the necessary skills and qualities to engage and facilitate such conversations. Nurses must therefore have a good understanding of the Mental Capacity Act 2005 and how a lack of capacity, whether permanent or fluctuating, can affect a patient's care and decision-making (National Institute for Health and Care Excellence, 2018).
The authors have devised an acronym that highlights the key considerations to having ACP conversations (Figure 1).
Conclusion
This article highlights the importance of open and honest conversations with patients regarding their future care, and their wishes and preferences. Although there are barriers to facilitating these conversations, the nurse has a pivotal role within the healthcare team in ensuring the conversations happen in a timely manner and are facilitated by compassionate, confident and skilled individuals.