A Critical Dialogue on the Transformational Nature of Dementia: Response to Open Peer Commentaries on “Cognitive Transformation, Dementia, and the Moral Weight of Advance Directives”

This article refers to:

Cognitive Transformation, Dementia, and the Moral Weight of Advance Directives

I had hoped upon writing “Cognitive Transformation, Dementia, and the Moral Weight of Advance Directives” that the piece could spark a constructive dialogue amongst scholars regarding the transformational nature of dementia. Reading the 17 open peer commentaries that were produced in response to my article, it is my pleasure to discover that such a dialogue has indeed been sparked. All of the responses produced are not only insightful but are also deeply enriching to the ongoing debate as to whether advance directives (ADs) ought to have moral weight in medical decision-making (and if so, how much). In my article, I argue that having dementia is a cognitive transformative experience which can result in significant preference and value changes of the individual whom it affects. I argue that this fact has consequences for how much moral weight we ought to assign to a patient’s AD. Specifically, my argument advanced a conclusion that we ought to be cautious about the overall effectiveness of ADs and this, in turn, should reduce the moral weight we assign to them. I suggested that this approach better aligns philosophical thought with real clinical practice. Thus, there are four core areas in which it is important to receive feedback on: (i) Regarding the transformational nature of dementia, (ii) whether or not my view does align with real clinical practice, (iii) oversights of my view, and finally (iv) what reflections my view has produced about medical decision making moving forward. I will address each consideration in turn.

THE TRANSFORMED SELF AND DEMENTIA

I argue that dementia is a cognitive transformative experience which results in certain preference shifts and value changes. I suggest in my article that as we have no means of telling if these shifts result from neurodegeneration, or from the transformative experience of having dementia itself, we ought to take these new preferences seriously. Jongsma (2020) disagreed with this suggestion, claiming, “Walsh’s thesis that having dementia means one ‘gaining’ experiences is not a likely explanation for behavioural and value changes of people with dementia.” Along similar lines, Jox (2020) argues that patients with severe dementia lack the condition of possibility of experiencing a cognitive transformation, “If something is disconnected, however, it cannot be logically transformed. For experiences to have a transformative effect, they have to be stored, remembered and compared to each other.”

Both of these suggestions are insightful, and ones I did not give attention to in my article. With respect to the transformative experience framework, Paul (2020) suggests that there are two important tenets, “First, because [the transformative experience] is unlike other kinds of experiences they have had, in an important and distinctive sense, a person cannot imagine what the transformative experience will be like for them before they undergo it. Second, because it will change the kind of person they are, some central and important features of what they care about will change.” I take the crux of both Jox’s (2020) and Jongsma’s (2020) points to be that dementia patients in the severe stage of the disease are unable to fulfill the first condition, as they cannot adequately compare experiences. As such, experiences like dementia cannot reasonably be compared to the transformative experience of being in a war or having one’s first child. I concur that these two kinds of transformative experiences are different but want to resist the conclusion that we cannot deem having dementia to be a true transformative experience.

I concede with both Jox (2020) and Jongsma (2020) that certain patients with severe dementia may lack the capacities necessary to fulfil Paul’s (2020) first condition. However, this consideration does not apply to the majority of dementia patients who can fulfil this condition, and therefore do qualify as having a transformative experience, nor does it threaten to undermine my own argument. It strikes me that the requirement of storing, remembering, and comparing experiences is only necessary for the individual to realize they have been transformed. Must individuals know that they have been transformed to have been personally transformed? I want to suggest that we can still be transformed by events we fail to remember and store efficiently. For instance, we know that survivors of childhood abuse often fail to remember the event itself, and yet this experience is still transformative for them (Freyd 1998). The same can be said of other events, such as suffering a traumatic brain injury and failing to remember your loved ones after the event. In spite of this rebuttal, both Jongsma (2020) and Jox (2020) have highlighted to me the importance of producing a richer account of the differences between dementia and other kinds of transformational experiences.

In a similar spirit to these responses, Menzel (2020) raised that we cannot be certain that patients with moderate-severe dementia authentically change their mind in the way I have suggested in my article and that this fact throws us into the then-self/now-self problem. This problem, simply put, is whether the person who wrote the AD still counts as the same person who has to live with the consequences of the AD. Menzel 2020 argues that whilst this problem is a legitimate one, “the presence of this problem destroys very little of a directives moral weight.” Limbaugh et al. (2020) disagree, claiming that “the application of an AD is prudent only insofar as one is highly confident that it is being applied to the person who signed it.” They produce a sophisticated philosophical defence of the argument that in cases of severe dementia we lack this confidence entirely. Whilst I am in agreement with Limbaugh et al. 2020 on this, Menzel’s (2020) commentary also highlighted to me the need to think more critically about the motivations behind why people want to write ADs in the first place. This is an important point and will be addressed in §3 of this response.

Various respondents also identified that the transformational nature of dementia cannot be limited to the realm of cognition, as this ignores the extent of the transformational nature of the disease. Viaña et al. (2020) poignantly point this fact out, “Cognitive changes and cognitive transformative experiences are not the only, or arguably primary, experiences of people with dementia. They could also undergo behavioral and social transformations, should they experience neuropsychiatric symptoms and/or be socially positioned in a way that limits their opportunities for decision-making.” Lyreskog et al. (2020) echo this oversight of my account of the transformational nature of dementia, “Throughout the progress of dementia and the cognitive transformative experience that it entails, the values, preferences, and the very identity of patients can be observed to be co-shaped by–and co-shape–those of people around them.” Both of these commentaries enrich my own account of the transformational nature of dementia and have encouraged me to think far more critically about the limitations of my own account by narrowing in on cognition. The social transformation cannot simply be ignored or placed aside. In fact, Rempala et al.’s (2020) commentary advocates for a medical decision making approach which situates people with dementia in a community context by making it the case that people with dementia are supported as autonomous individuals via community engagement. They argue that this community-centric approach “represents a morally superior alternative to advance directives, as it undermines neither previous nor remaining autonomy.”

CLINICAL PRACTICE: CHALLENGES AND COMPATIBILITY

Several of the clinical commentators suggest that my framework as it stands is out of touch with clinical practice itself, which is problematic given my attempt to align clinical practice with philosophical thought. Wasserman and Navin (2020) argue that my proposal does not align well with, or best explain, real-world clinical practice. They argue, “Walsh’s complicated story about the [transformative experiences] associated with dementia is irrelevant to real-world clinical decision-making. In the clinic, whether a patient gets what they want depends not on what caused their preferences, but whether a patient possesses [decision making capacity] relative to that preference.” My response to this suggestion is that one cannot easily divorce what causes one’s preferences from one’s assessment of a patient’s decision making capacity, as the two are intimately interconnected. This is illustrated beautifully in Viaña et al.’s (2020) commentary which articulates that “Malignant social positioning of people living with dementia (Kitwood 1990) can significantly reduce their opportunity to be involved in various decisions.”

Fong and Chiong (2020) suggest that my account is misguided because it fails to account for the fundamental role ADs play in advance care planning (ACP). They argue, “Advance care planning, understood as a process, has well-established clinical benefits.” Significantly, they suggest that ADs play a core role in ACP, fulfilling three purposes: as a tool to begin discussions regarding end of life care, as a means of identifying surrogate decision makers, and that ADs confer legal authority to selected surrogates to make decisions on a patient’s behalf. I concede with Fong and Chiong (2020) that it is an oversight of my proposal that it fails to engage with the ACP literature. In spite of this critique, however, I do not find my philosophical framework fundamentally at odds with their suggestion regarding the importance of ADs in ACP.

The clinical perspective put forward which best aligns with my own philosophical framework is found in Bosisio and Barazzetti’s (2020) commentary. They align my own view with their endorsement of ACP in dementia care. They agree with my proposal that it is problematic for ADs to bear moral weight for reasons of precedent autonomy (Bosisio and Barazzetti 2020). Instead, they propose, “We contend that, in order to bear moral weight, advance directives ought to be integrated in ACP as processes which allow for the respect of [person with dementia]’s autonomy as a “capacity to value” (Bosisio and Barazzetti 2020; Jaworska 1999).

OVERSIGHTS

There are three significant oversights in my article as it stands. The first oversight of my proposal is exposed by Earp et al., (2020) who have produced a series of experiments testing ordinary people’s intuitions on the cases explored in my article to assess whether their intuitions match my own. Their findings suggest both the content of the AD and the direction of change experienced by the person with dementia matters as to whether ordinary people think an AD should be implemented or not. This is significant, as neither of these factors are considered in my article. Their findings are fascinating, as they also discover that, “Specifically, agreement that the post-transformation patient was a different person was highest when there was no AD mentioned at all,” suggesting that the identity problem is more likely to be viewed as a legitimate problem if there are no ADs (Earp et al. 2020).

The second oversight of my proposal is that it involves a narrow conception of why ADs are important in the first place. Commentators who emphasize this issue include Menzel (2020), Persad (2020), Jongsma (2020), and Widdershoven et al. (2020). Persad (2020) argues that, “Ultimately, some people are right to fear or avoid the transformative experience of dementia, either because they do not value being transformed (Paul’s (2020) view), or because they do not value being transformed in that way” (Callard 2018). Persad suggests that people have good reason for writing ADs if either of these holds for them. Relatedly, Widdershoven et al.’s (2020) account explores an alternative purpose ADs serve, as they suggest that ADs “are not instructions for the future, but instruments that enable future meaning-making and orientation.” Their account highlighted to me the need to think more critically regarding how different people conceptualize ADs. It would be greatly beneficial if an experimental study, like the ones conducted by Earp et al., (2020) could assess whether ordinary people view ADs as instructions for the future or tools for future meaning-making, as I had only considered the former in my article.

The final oversight of my proposal is articulated by Lanphier and Fyfe (2020). They argue that my proposal leaves the legal problem unresolved, “Either the author accepts that advance directives should be legally permissible, and therefore given legal force, or thinks the moral risk of changed preferences should render the legal scheme impermissible. The middle ground we suspect Walsh hopes to inhabit is untenable.” Wright’s (2020) commentary echoes this legalistic concern, highlighting that my article fails to adequately consider healthcare decision-making law. Wright’s (2020) account advances a legalistic alternative to my account, “Specifically, I argue that formal supported decision making can be a better means of ensuring healthcare decisions consider current preferences, values, and interests after a transformative cognitive experience such as having dementia, doing so in a manner consistent with trends in disability and guardianship law.” I am sympathetic to this view, but recognize the limitations of the nullification of ADs, particularly given the fact that they are valued by ordinary people and clinicians alike as a useful tool in end-of-life decision making.

MOSAIC MEDICAL DECISION MAKING

At present, I have been sympathetic to two views in the clinical and legal commentaries, Bosisio and Barazzetti (2020), and Wright (2020), whose views appear in conflict with one another. After all, we cannot maintain that ADs be assigned more moral weight if they are incorporated into an ACP plan and also maintain that ADs should not be given any legal weight. However, there seems to be a middle legal ground, proposed by Goering (2020), which could help bridge this gap between clinical and legal practice. Goering’s (2020) proposal is that “advance directives be permitted but treated as advisory.” Goering (2020) suggests that “using the AD as guidance also resonates with Joseph Fins’ proposal (2018) for “mosaic decision making” in the context of minimally conscious patients who are returning to “voice” if not competency.” Mosaic medical decision making then seems compatible with both clinical perspectives as well as perspectives of patients who value ADs as a tool in end-of-life care, as it does not leave ADs with no legal or moral weight whatsoever. Moreover, the spirit of my proposal, insofar as I want to expose the uncertainties involved in ADs and expressed preferences in dementia without wrongly discounting either, is captured by Goering’s (2020) recommendations here.

CONCLUSION

I would like to express deepest gratitude toward all of my commentators for taking the time to write such insightful commentaries and for their critical engagement in this dialogue regarding the transformational nature of dementia. These commentaries have provided valuable insights into areas my article lacks critical insight on: (i) the extent of the transformational nature of dementia, (ii) setting precedent autonomy aside, reasons why ADs are important and (iii) the practical, clinical, and legal problems with my prescriptive approach as it stands.

ACKNOWLEDGEMENTS

I would like to thank Alexander Miller Tate for providing insightful comments on this response. I am indebted to him for his friendship and encouragement.

DISCLOSURE STATEMENT

No potential conflict of interest was reported by the authors.