Dr Sarah Hopkins is a geriatric medicine registrar and a BGS and Vivensa Foundation Clinical Doctoral Fellow at the University of Cambridge. She is researching advance care planning (ACP) with older people living with frailty. This blog explores some of the questions raised by an article just published in Age and Ageing, “New horizons in advance care planning: narratives, identity, and cultural humility”.
1. What if the goal of ACP was to enable patients to preserve their sense of self?
Trying to preserve a coherent sense of self is important for wellbeing and is central to older people’s experience of living with chronic illness towards the end of life. Research shows that older people long for continuity in how they perceive themselves across the past, present and future.1 Our sense of self comes from the life stories and narratives we tell ourselves and others about our past, our present and our future.2
Supporting patients to tell their stories, through advance care planning, can help them to make sense of illness and to assess their own life journey. This can help individuals link their sense of who they are now with their past self. Advance care planning can also help link patients’ perceptions of their future self with their current identity: by making decisions about what they want their future to look like, this envisioned future becomes part of the individual’s present identity.
How would your ACP practice differ if the primary goal was helping your patients to preserve their sense of self?
2. Is ACP culturally specific?
Dominant models of advance care planning are underpinned by culturally specific assumptions and values. These centre on the importance of control and acceptance through finding meaning in adversity. These values are often taken for granted as inherently good, but evidence suggests that they may have less relevance in some cultures. Realising that these values are culturally specific allows clinicians to question their relevance for individual patients and is a step towards cultural humility which begins with “recognising that professional norms are only one worldview”. This might help to address disparities in the quality of palliative care received by people from minoritised groups.3 Control may be less relevant when there is greater uncertainty over the disease trajectory, as is often the case for individuals living with frailty and advanced multimorbidity, for whom living well day-to-day may be a priority.
How would your ACP practice differ with a focus on cultural humility?
3. Is it a clinician’s job to help patients find meaning as they approach the end of life?
When, as part of ACP, clinicians share information with a patient about their illness and prognosis, they can contribute to how that person thinks about and makes sense of their illness. Some people believe it is also part of clinicians’ role to help patients to approach dying in a particular way, for example, by finding acceptance and meaning in the dying process. This can be seen in a NEJM clinical practice guideline on serious illness conversations which states that “clinicians should be able to help cultivate prognostic awareness and existential maturation”, where death is seen as a “nontraumatic outcome”.4 This implies a role for clinicians in shaping how their patients approach dying, and generates a tension between making clinicians responsible for helping patients tell a “good death” story, and the patient’s authority to tell their own story. So far, there has been no research looking at what role clinicians play in shaping patients’ life stories through ACP, nor at patients’ views or outcomes.
What role do you see for yourself in helping patients to find meaning towards the end of life?
We explore these questions, and the state of the current evidence, in our New Horizons article. If this has prompted you to reflect or if you’re interested in learning more, you can read the full article in Age and Ageing.