What did we do?
As part of our consultation event to establish research priority setting for end of life care in Greater Manchester, stakeholders identified that further research on Advance Care Planning (ACP) was a key priority. We investigated this by synthesising the existing research literature pertaining to patients’ and carers’ perspectives on ACP discussions to address four broad objectives arising from the priority setting event:
Describe how ACP discussions are held with patients and carers;
Explore who patients and carers feel should be initiating ACP discussions;
Identify when patients and carers feel is the most appropriate time to have ACP discussions;
Identify the perceived value placed by patients and carers on ACP discussions.
Why was it important?
ACP is an internationally-recognised term to describe discussions between people, their families and informal carers, and health care professionals about a person’s future preferences for care. ACP can have positive effects on the quality of end-of-life and in the UK it is endorsed by a range of organisations including the Department of Health, NICE, and the General Medical Council. There is a body of guidance for professionals about the general principles of ACP, but there is a lack of clarity about how patients and carers feel ACP discussions should be implemented. This is important because there is a need to ensure that policy, practice, and research are aligned with patients' and carers' preferences about how ACP should be implemented.
How did we do it?
We systematically reviewed the existing research literature pertaining to patients’ and carers’ perspectives on ACP discussions. There is an abundance of literature reviews on ACP, therefore we conducted a ‘review of reviews’ to synthesise the information on patient and carer perspectives within these existing reviews. We included 55 literature reviews that helped us address the objectives arising from our priority-setting event.
ACP discussions are happening most often with patients who are older, white, female, well educated, and have cancer. The preferences of people with other conditions, and from other sociocultural groups, are less well understood.
There are many different ways that ACP discussions can be supported, including via a range of tools, and through print, video and computerised formats. All of these are generally acceptable to patients and carers.
Family carers have a strong influence on whether ACP discussions happen, and often mediate between patients and health care professionals. This is particularly the case in the contexts of dementia and long-term care.
Patients and carers prefer health care professionals to initiate ACP discussions. This should be a professional who knows the patient and family well, and who has a good relationship with them.
There are mixed views about the best time to begin ACP discussions. For people with dementia, patients and carers generally would prefer to begin earlier. For people with other conditions, the picture is much more variable: they may need time to come to terms with the shock of a diagnosis, may not understand the life-limiting nature of certain illnesses (e.g. COPD), and may prefer to wait until they feel ACP is more clinically relevant.
Patients and carers generally view ACP discussions as positive and worthwhile, helping them feel more confident about end-of-life issues, worrying less about the future, and feeling more at peace and in control. However, this is a not a universal finding. ACP discussions can also raise complex and conflicting emotions for patients and carers, as they can make people feel distressed, and can highlight tensions and differences of opinion between family members.
Sociocultural beliefs have an important influence upon the perceived value of ACP. For example, some groups may have strong religious beliefs meaning they are less likely to value ACP.
The emphasis placed by Western cultural values upon the ability of ACP to uphold individual patient autonomy may not always be the most important perceived benefit of ACP, as some patients may be more motivated to reduce potential future stress on their family members.
These findings highlight that there is a balance to be found between standardisation and flexibility of ACP implementation. In health care, standardisation of practice is often seen as the best way to improve quality of care. It could help ensure greater equity in who is offered ACP, improve transfer of information, and help practitioners feel more confident. However, it would also need to be able to respect the diverse preferences of patients and carers for how ACP is implemented, when, and by whom. Health care professionals need to be given the time, and the psychological and emotional skills, to explore individual patient and family preferences so that they can tailor ACP implementation to their specific context, and ensure that ACP is implemented in line with person-centred approaches to care.
Hall A, Rowland C & Grande G., 2019, How should end-of-life advance care planning discussions be conducted according to patients and informal carers? A qualitative review of reviews, Journal of Pain and Symptom Management
For more information please contact Michael Spence (Programme Manager).