Dementia affects over 50 million people worldwide, and that number is only expected to increase as populations age and the average lifespan increases. At a global scale, the care provided to people with dementia by informal caregivers has an estimated value of over a trillion dollars.
Given its prevalence, it is likely that someone you know and care about has been impacted by dementia, either by being directly afflicted with the condition or by serving as a caregiver to a person with dementia.
Furthermore, the characteristic symptoms of dementia (cognitive decline, memory issues, irascibility) are traits that complicate medical decision-making. They are also traits stereotypically associated with old age more generally. Since getting old is a potentiality for everyone, we all have (some) reason to care about how those with dementia are cared for when the advanced stages of their condition render them dependent on others.
Our existing theoretical frameworks and practices provide limited guidance.
Over the last several decades, theorizing about medical decision-making has centered patient autonomy. There are good reasons for doing so. Centering patient autonomy has led to the development and improvement of practices like informed consent procedures that many now take for granted. However, defining what autonomy means for those living with dementia is challenging, particularly as their dependency on their caregivers increases over time.
In practice, when patients lack the competency to make important decisions about end-of-life care, advance directives (ADs) are typically consulted. However, an AD must be made when a person is legally competent to make these decisions. Many with dementia find themselves diagnosed too late to issue an AD for end-of-life care planning or face financial and bureaucratic barriers that make doing so challenging. Even those who manage to do so may find their AD called into question or overridden as their dementia symptoms worsen. Furthermore, existing definitions of end-of-life do not account for the uncertainty in the trajectory of dementia.
When someone lacks decision-making capacity, a surrogate decision-maker is selected. Often in cases of dementia, the surrogate decision-maker and caregiver roles are occupied by the same individual. However, the surrogate decision-maker/caregiver is still left to confront the same challenges that rendered the AD and other decision-making mechanisms ineffective.
In addition, they must confront these questions as the dependency of the cared-for increases, while simultaneously navigating changes in the personality and relational ecology of what is often one of their most significant relationships. Studies have shown that caregivers for people with dementia experience higher rates of social isolation, making the care work involved fraught with emotional and social burdens that can impact decision-making.
Finally, unlike other leading causes of death, little progress has been made in identifying treatments or cures for dementia. Recent exposure of fraudulent research in once-promising leads for a treatment or cure has further set back progress. Given that symptoms tend to worsen over time, those with dementia and their caregivers are forced to confront and re-confront existential questions about life, meaning, and purpose.
As we can see, making decisions regarding end-of-life care plans with or for people who have dementia are caught in a web of challenges that require a different theoretical framework and set of practices to untangle.
So, how can we overcome the limitations of our existing theoretical frameworks and care practices? I suggest that we begin by centering a person’s legacy, instead of just their autonomy.
Why legacy? In the broadest possible terms, a legacy is who and what a person leaves behind. As such, the concept draws our attention to the impact a person can have even after they pass and the narratives that their shape life story.
Many philosophers have established that narratives are a primary way that we make sense of ourselves and others. The pioneering work of Rita Charon has demonstrated empirically measurable benefits of incorporating narrative into the education of healthcare professionals and into everyday medical practice. Adriana Cavarero and Hilde Lindemann Nelson draw attention to the ways narratives constitute our identities.
Developing an understanding of a person’s place in the world and their connections to those around them promotes empathy and sensitivity toward their experience, which can result in care that better meets the needs of the cared-for. At the same time, such an approach offers resources for confronting existential questions to those who cannot cling to the hope of reversing their condition. The meaning-making potential inherent to the narrative lens of a legacy-centered approach thus benefits both the cared-for and their caregiver.
Finally, legacies are future-oriented. They provide avenues for cultivating and sustaining hope to those afflicted with dementia and those who care for them.
In the context of end-of-life care planning, a legacy-centered approach should 1) emphasize a person’s intergenerational connections, 2) attend to the values, experiences, and relationships that give shape to a person’s life story, and 3) consider who and what a person will leave behind when they pass.
One might wonder what justifies using the insights we gain from legacy-centered approaches to guide decisions regarding end-of-life care. If the very thing it provides us with insight into (i.e., the person’s values, relationships, and character) is subject to change as their condition progresses, it seems that centering legacy does not get us any further than a focus on autonomy.
However, if we truly center legacy as I’ve described above, we will also normalize thinking about the declines and increasing limitations of dementia (and of aging more generally) as part of the life cycle of a human being. Such thinking is conducive to continuing to regard those with dementia as individuals deserving of dignity in ways that exclusive focus on individual autonomy is not. A legacy-centered approach also benefits caregivers and other loved ones by framing shifts in the personality and abilities of those with dementia as natural changes rather than irrevocable losses. In this way, centering legacy allows caregivers to synthesize what they continue to learn about the person they care for through their caregiving with their shared history and knowledge of who the person has been.
Adopting a legacy-centered approach is particularly important for end-of-life care decisions because we value not just discrete experiences, but also, as Dale Doresy argues, how they are sequenced and the shape of a life they construct. How a person spends their final days, who they are remembered by, and what they are remembered for have the potential to redraw the shape of their life story in a positive way. Normalizing such considerations in end-of-life care decision-making by centering legacy is thus beneficial for all of us who are fortunate enough to grow old.
Kelly Ann Cunningham
Kelly Ann Cunningham is a Lecturer in the Philosophy Department at Bentley University, where she teaches courses in ethics, applied ethics, and the history of philosophy. Her current bioethics research focuses on identity, aging, and end-of-life care practices. She is also interested in questions about trust, friendship, and human flourishing.
