Advance care planning—factors influencing stability of preferences

Key Points

• Preferences can change over time.

• Advance care plans need regular review.

• Stability of preferences can be influenced by family and social support.

What is advance care planning

Advance care planning (ACP) is a series of conversations that is refined over time, enabling individuals to define goals and preferences for their future healthcare, should they lose the capacity to make these decisions. These conversations are discussed and recorded with healthcare providers and those close to them [1]. The content of such conversations is non-prescriptive but may include what matters most to them, treatment escalation planning, appointing a lasting power of attorney and preferred place of care and death [2].

Assumption of stability and family involvement

Exploring and achieving a patient’s preferred place of death has long been considered a key indicator in establishing the quality of death [3]. Previous research has focused on whether patients’ wishes are respected at the end of life, and although acknowledged that such conversations should be re-visited, there is limited research exploring how unstable patients’ preferences are. Policies and practices assume that patients’ choices for their end-of-life care are stable over time [4] but where studies do exist, they support the idea that preferred place of care and death are not fixed concepts [5, 6]. It is well recognised in the literature that where family members act as ‘surrogate’ decision-makers; they can incorrectly predict their relative’s wishes and preferences for healthcare, which can be seen as a threat to their autonomy [7].

Factors that influence stability

Kawaguchi et al showed that in their longitudinal study of 1,200 independent Japanese older people between 2016 and 2019 aged over 65, only 40% had stable preferences [8]. As mirrored in other studies, those with a spouse at home and a strong support network are more likely to choose home as their preferred place of death [3, 8]. Generalisability of these findings is limited; together with geographic limitations, the average age of participants was 72.9 and 90% had self-reported good health. Research suggests that seriously ill patients tend to have more stable end-of-life preferences, and that those who know their prognosis or are in pain are more likely to choose home as their preferred place of death [9]. In their systematic review, Gomes et al. report that 80% of people did not change preferences as illness progressed [10]. We also know that culture, religion and socioeconomic variability can influence choices [11].

It has been suggested that those with greater access to home-based palliative care and social care services are more likely to choose to and die at home [4] and the aetiology of terminal illness will impact on preferred place of death. In their study, Fereidouni et al. found that those with haematological malignancies were twice as likely to die in hospital, but that, overall, more than 50% of patients with cancer would choose to die at home [3]. Higginson et al. report that those with non-cancer diagnoses were more likely to prefer hospital based palliative care units; but this of course depends on availability, as such units rarely exist within the UK [12].

It is worth noting that throughout the literature, there is a large variability of concordance between preferred and actual place of death for a variety of factors, including the availability of medical and social support, further prompting the need for thorough and honest conversations [3, 12].

Re-evaluation over time

Together with socioeconomic factors, failures or successes in care will also influence patients’ preferred place of death [12]. As death nears, or at times of crisis, preferences can change, which should act as a prompt for re-discussion. Auriemma et al. report that preferences to receive therapies had greater instability than preferences to forgo therapies [4], mirrored in the John Hopkins Precursors Study with a 3-year follow-up phase suggesting that reassessment is critical for patients who desire more aggressive care [13]. Turner and Flemming introduce the idea that ‘home’ is a concept rather than a physical location, suggesting that, to some, ‘home’ may be the idea of being surrounded by family and familiarity rather than being physically at home [14].

Conclusion

The very aim of ACP is to ensure that patient’s wishes and preferences are respected at the end of life. Kawaguchi et al. highlight that if preferences are too unstable, it can be difficult to provide quality end of life care [8]. If we are able to recognise the factors that lead to instability in care preferences, this can prompt us as healthcare professionals to revisit conversations with patients and family members in a timely manner and ultimately improve the quality of end-of-life care.

Although the availability of social support at home no doubt has an impact on preferred place of death, there are likely to be a huge number of other factors including, but not limited to, cultural beliefs, formal social and palliative care services availability and symptoms at the end of life.

Previously, it has been assumed that family members can be a threat to patients’ autonomy and to be cautious of their involvement in ACP conversations; yet, the emotional and instrumental support being received and provided is likely to have implications on the stability of preferences, so patients may wish to include family in conversations to a greater degree than previously thought. This, in turn, may help to improve the family’s bereavement reactions.

Often, where research exists it focuses on younger patients or those with cancer diagnoses. Further research is required to look at the complexities of the frail, older population and the impact of prognostic uncertainties that are so prevalent within this group. We therefore need to be conscious that priorities may change over time and have a responsibility to ensure advance care plans are reviewed at regular intervals and accurately reflect our patients’ wishes.

Declaration of Conflicts of Interest

None.

Declaration of Sources of Funding

None.

References