Introduction

Euthanasia is a form of physician-assisted dying that is legal in some nations but remains prohibited in others. It allows patients facing terminal illness and in extreme pain the option of ending their suffering. It is classified into three categories: voluntary, non-voluntary, and involuntary euthanasia. Euthanasia is considered non-voluntary in cases when a patient is unable to consent, and involuntary when it is conducted explicitly against a patient’s will; both are unethical and universally illegal. Voluntary euthanasia can be further classified as active or passive; passive involves withholding treatment as per the patient’s wishes, and active involves deliberate and direct action on the physician’s part (NHS, 2018). In this paper, I will be discussing active, voluntary euthanasia and some of the ethical dilemmas the process poses through the case of Mrs. A, a Dutch woman who underwent EAS in 2016 following a previously penned AED.

In the Netherlands, EAS is legal for patients above the age of 16 (Miller et al., 2018). The Termination of Life on Request and Assisted Suicide (Review Procedures) Act 2001 regulates the performance of EAS; it ensures all cases in which EAS is conducted are sent to the Regionale Toetsingscommissies Euthanasie (RTE). These are regional committees that review each case to determine whether or not EAS was administered as per the ‘due care criteria.’ Physicians must confirm that a patient’s request is voluntary, informed, and well-considered, and that the patient is experiencing unbearable suffering with no other viable alternative. Physicians must also be certain that there are no contraindications or signs that the patient no longer wishes their life to be terminated (Regionale Toetsingscommissie Euthanasie, 2016b). For patients suffering from neurodegenerative conditions, EAS is typically conducted under an AED written by the patient before the onset of their condition.

AEDs allow patients to preemptively make decisions that their condition may prevent them from making in the future. For instance, a patient recently diagnosed with dementia (who is certain that they do not want to live with the effects of the condition) may sign an AED before their cognitive ability is significantly impaired (Regionale Toetsingscommissie Euthanasie, 2016b). In a majority of cases, this does not raise concerns, as even after experiencing cognitive impairment, patients’ wishes remain congruent with their AEDs. Therefore, this paper does not aim to critique AEDs or EAS in general, but to examine the ethical dilemma of cases in which a patient’s wishes post the onset of their condition do not align with those previously made through the lens of personal identity.

Review of the case studies

Mrs. A lived in the Netherlands and was diagnosed with Alzheimer’s disease towards the end of her life. Having seen her mother struggle with dementia, she was certain that this was not a fate she wanted to experience. Before the onset of her condition, Mrs. A penned an AED, stating she wanted to undergo EAS when she was ‘no longer able to live at home’. Her AED was revised a few years later to state that she would like to undergo EAS whenever she felt ‘the time is right’ (Miller et al., 2018).

As her condition worsened, she reportedly avoided discussing the procedure with her physician. Eventually, her condition progressed to the point at which she could not be adequately cared for by her family members, and she was admitted to a nursing home. According to her caregivers, she would express inconsistency in her wishes when discussing EAS, often expressing the desire to delay the procedure, saying, ‘It’s not that bad yet.’ She exhibited restless, depressive, and occasionally aggressive behavior, causing her physicians to conclude that she was suffering unbearably. Once it was confirmed that the legal criteria were met, her physicians conducted EAS in the presence of Mrs. A’s close family (Pascoe, 2017).

The RTE found several issues in how the procedure was conducted, such as the use of a sedative without the patient’s knowledge, and the fact that the patient had to be restrained at a point during the procedure. This indicated a withdrawal of consent and, in conjunction with the patient’s previously expressed uncertainty, led to this case being recorded as an example of non-compliance with due care criteria. The RTE prefers a restrictive interpretation of AEDs, and the wording used by Mrs. A, although broad, reflected her implicit assumption that she would make the final decision. The physicians, however, cited the degradation of Mrs. A’s cognitive ability as an indication that her decision-making capacities were impaired (Miller et al., 2018).

When EAS is conducted as per an AED rather than immediately as per oral request, the issue of AED validity is complex. An effective AED requires specificity in terms of when the EAS must be conducted: patients and medical professionals alike benefit from a precise directive with no room for misinterpretation. However, it is an incredibly difficult task for a patient to predict at exactly which point they will be suffering enough to want to end their lives. In most cases, patients underestimate their ability to adapt to their condition and write their AED under the assumption that they would want to go through with EAS sooner rather than suffer for longer (Menzel, 2018a). According to a survey conducted by Nakanishi et al. (2021), clinicians have raised concerns about the implementation of AEDs in Canada for this reason, particularly noting the difficulty in determining when to implement a directive.

Like Mrs. A, it is extremely common for patients to adapt their AED or make verbal requests as they approach the date of the procedure, as they grapple with the complicated realization that they will soon lose their lives. AEDs do, therefore, have some flexibility in terms of how and when they are carried out; patients can, of course, change their minds about certain conditions of the AED or having an advance directive at all. In cases involving purely physical conditions, this doesn’t often pose much of an issue, as there is no doubt about the state of their decision-making ability while requesting a change; however, this is not the case for patients like Mrs. A, whose conditions affect the mind rather than the body (Okonkwo et al., 2007).

This is not to say that all cases involving dementia patients play out in the same manner. According to a report published by the RTE in 2016, the same year of Mrs. A’s case, a majority of dementia patients who penned AEDs were consistent in their wishes up until their deaths. Patients who chose to terminate their lives while they were still in the early stages of their condition were able to clearly state their wishes, and patients who underwent EAS in the advanced stages of dementia still displayed verbal and non-verbal signs that their wishes had not changed (Regionale Toetsingscommissie Euthanasie, 2016b). An example of this is the case of Ms. C, who faced Alzheimer’s disease as well. She had discussed EAS with her physicians for several years before the onset of her condition, and in an AED finalized 2 years before her death, she specifically described the conditions she considered unbearable. Although her ability to communicate was hindered as her condition progressed, physicians noted that she would often have moments of lucidity during which she would clarify her wishes, and appeared ‘visibly happy’ once she was told she would receive EAS (Kim et al., 2021). The RTE concluded that this was a case of compliance with due care criteria, as she was able to express a valid request despite aphasia and cognitive decline (Regionale Toetsingscommissie Euthanasie, 2016a). Unlike Mrs. A, Ms. C demonstrated congruence in her wishes even after reaching an advanced stage of dementia – therefore, her case is an example of EAS carried out ethically, honoring the patient’s wishes.

The psychological continuity theory

If a patient suffering from a neurodegenerative condition changes their mind about an AED after the onset of their condition, a grey area is created in which physicians cannot be certain whether to follow the AED’s instructions as the patient’s past self- intended or to respect what the patient currently desires. The goal of professionals is still to honor the patient’s wishes, but there now exist two conflicting sets of wishes, both of which could be considered valid. The problem arises if the patient’s decision-making ability is impaired; should their past wishes take precedence over their current ones?

Known as the ‘then-self vs. now-self’ problem, this dilemma centers around the fact that a person (Mrs. A in this case) with an outwardly singular identity has held two completely contrasting beliefs at different points in time; the ‘then-self’ being the version of Mrs. A who wrote the directive, and the ‘now-self’ being the version of herself who did not wish to be euthanized, at least at that present moment. The main conflict behind this issue is the fact that Mrs. A (past) had created her wishes with the knowledge that Mrs. A (present) would be unable to make decisions. If viewed through this lens, a past and present version of the same person is implied, but with such a drastic difference between their minds that the question arises of whether or not to consider them the same person at all (S. Shoemaker, 2008). Assuming her past and present selves were the same identity, her change of mind could simply be considered an effect of impaired decision-making and not true to her actual wishes (Menzel, 2018b). However, I strongly disagree with this standpoint.

The Neo-Lockean perspective on personal identity is a theory of psychological continuity; to understand this, one must make the distinction between minds and bodies. According to Shoemaker (1970), the two are coincident entities which make up a human, but cannot be considered the same, as they have different persistence conditions. This is proved by the fact that the human ‘animal’ (the physical body) persists before the formation and after the degradation of the human mind. The persistence condition of the mind, which forms one’s identity, is a continuous chain of memories which can be traced through thought. If this stream breaks, a person’s identity becomes fragmented, and the past self cannot be considered the same person as the present self (Olson, 2023). Since this case involves the loss of memories, I believe this theory is apt in the context of the situation.

A neurodegenerative condition like Alzheimer’s disease would cause high levels of fragmentation, considering its impact on the thoughts and memories of a person; therefore, the argument could be made that Mrs. A would not be considered the same person as she was when she wrote the directive. If the directive was written by Mrs. A for herself, but her identity fragmented and she was no longer considered herself, one could liken it to her facing the effects of someone else’s directive. Say, for instance, a couple signs a marriage contract. Soon after the wedding, one of the parties is replaced by a clone; nearly identical, save for the fact that the clone holds just about a fraction of the memories held by the original. Could the clone be expected to stay in a marriage which not them, but their predecessor, agreed to? I would liken the marriage contract to the AED, and the replaced individual to Mrs. A. It seems unreasonable to hold her to an agreement she did not sign. Since the ‘now-self’ and not the ‘then-self’ faces the effects of the directive, it stands to reason that the present version’s desires should supersede the past’s.

This does not mean all AEDs should be considered invalid, however. When the present self cannot consent due to cognitive impairment, the only logical alternative decision-maker is the past self, making AEDs necessary. The issue arises only when the ‘then-self and now-self’ hold different desires. Ms. C, for instance, would have also held different identities before and after the onset of her condition, according to the psychological continuity theory. Yet, as her present and past selves held the same desire to undergo EAS, the application of the procedure was far more moral, respecting both her past wishes and current autonomy.

Evaluating the counterarguments

There are, however, multiple critiques of the psychological viewpoint as well. Say, for instance, Mrs. A’s identity was fragmented, and she therefore couldn’t have been considered the same person. Rather than this meaning she has a separate, second identity, it could also be said that she has no identity, considering this ‘fragmentation’ never ceases to a degree that could allow a second identity to be considered valid. Following this train of thought, it could be said that the best course of action is to fulfil the AED, as it holds the last wishes made by the patient before the loss of her identity, which respects the patient’s wishes just as much as the opposite course of action does.

Secondly, if a persistence condition of the mind is an unbroken chain of memory (Olson, 2023), the argument could also be made that Mrs. A never had a break in psychological continuity as she remembered the existence of the directive, as well as other details from her past. Of course, there were several areas in which her chain of memories was broken, but this applies to all of us; everybody loses memories and experiences confusion about the past, regardless of cognitive function. It would therefore seem as though nothing separates Mrs. A’s case from anyone else’s life; that either nobody has an unfragmented identity or that Mrs. A does.

Another critique of the psychological continuity theory’s application in this case is the implication that there are two clearly distinct ‘before fragmentation’ and ‘after fragmentation’ identities of Mrs. A. In reality, it is completely unlike this, as the onset of a condition like Alzheimer’s disease is not something which can be pinpointed. Although a general period during which symptoms begin to appear can be identified, an exact moment that marks the end of one identity and the beginning of another cannot. It would be more accurate, I suppose, to say there are three versions of Mrs. A: one without Alzheimer’s disease, one facing initial effects, and one who certainly does face the condition. The condition, however, is also one which worsens over time; one could say there is also a fourth identity, which is described as having the most severe version of the condition. The argument can be taken further until there are infinite versions of Mrs. A, making her lifespan appear more of a spectrum than a series of differing identities. This highlights the lack of distinction between these supposed differing identities of Mrs. A, weakening the argument that there is a distinct split in identity at all. It is more than likely that Mrs. A was facing symptoms of her condition even while drafting her AED for the first time, which certainly blurs the lines of which actions were conducted by which ‘identity’. Although this does not disprove the use of the psychological continuity theory entirely, the presentation of the onset of her condition as a gradation rather than an immediate transformation certainly weakens any points made regarding a ‘then-self’ and a ‘now-self’, as it is now made unclear which actions (specifically, conversations about the directive) were conducted by Mrs. A’s then-self and which by her now-self.

I believe all three criticisms rely on a misunderstanding of the psychological continuity theory. The essence of the point being made is not necessarily that there are exactly two distinct identities, the ‘before’ and the ‘after,’ but that there is a difference between the before and the after. In a sense, the second criticism responds to the first; Mrs. A must have still had an identity, considering she was conscious and held some memories connecting her to her past. It would be a stretch to say she had no identity, and this claim would deny the very real thoughts, feelings, emotions, and behaviors she expressed after the onset of her condition. Her identities may have changed, but an identity was still present, and she was, therefore, still a person. There was, however, a change significant enough to recognize a distinction between Mrs. A initially and Mrs. A closer to her death. Perhaps it would be more accurate to say she had a distinct ‘before’ identity and a fragmented, non-distinct ‘after’ identity, which existed as a shadow of her previous self.

Additionally, it is completely natural for humans to have a loss in memory; all of us do, whether through unconsciousness during sleep or with time. In terms of the psychological continuity theory, a chain of continuous consciousness does not mean one should be able to trace back one’s entire life through a series of memories; it simply means one should have mental causal connections between the present and all the past selves that have existed before (D. Shoemaker, 2019). It is in this vein that patients emerging from comas and experiencing amnesia effectively begin life anew, having to rebuild relationships from scratch and experience things for the first time again; their previous identity has ended, and a new one has begun since the incident.

For a patient like Mrs. A, the situation is admittedly more complicated, as the patient has memories of their past selves before the onset of their condition; however, there is still a significant break in continuity. Mrs. A mistaking the other residents of the home for schoolchildren that her ‘past self’ used to teach shows a connection with her past, but a clear break in continuity. To compare this with the small and insignificant breaks in psychological continuity that the average human experiences with memory loss, I think it is fairly evident that there is a great difference in severity between the two cases. The theory of psychological continuity, when applied to this case, would state that Mrs. A, although having remnants of her past self in her identity later in life, was also distinct enough from her previous self that she could not be classified as the same identity. She would, of course, still be classified as a person, perhaps as the same person overall, just with a different identity. This would give her the right to deny EAS, and her change of heart to be accepted as the patient’s current wishes (Buchanan & Brock, 1990/2004).

The criticism of her condition having developed over time and not all at once is valid, because this fact is indeed true. Her condition developed gradually and, similarly, gradually worsened. It is, therefore, nearly impossible to pinpoint a moment in which one identity ended and another began; to this extent, I agree with the critique posed. However, I would like to highlight that pinpointing the exact moment her identity fragmented is not any more useful to the exploration of the case than simply recognizing that her identity had changed at all. Even if we cannot tell when the change happens, there is certainly a change; when taking a step back to look at the life of Mrs. A (or any other patient with a similar condition), it is incredibly evident that the patient after the onset of the condition is, at least outwardly, extremely different from who they were initially. Especially when dealing with a condition such as this, differences tend to accumulate over time; this makes it difficult to recognize changes in a person’s identity as they occur, but does not invalidate the presence of these changes.

Animalism

The psychological continuity theory is not the only one which has been used to approach cases such as this. Another popular viewpoint is animalism, which states that identity is tied to the persistence of the human animal rather than psychological continuity (Blatti, 2014). A human animal, therefore, is the same as its past self as long as it undergoes the same biological processes as its past self. To understand the application of animalism to this case, one must understand the distinction between the person, the human animal, and the physical body. The physical body is simply that: the skin, bones, and flesh that physically make up a human. While this includes brain structure, it does not include consciousness or identity. The human animal is the physical body experiencing consciousness and the state of being alive; this is limited, however, to nutritive states. Although the physical body persists until decay or destruction, the human animal persists for only as long as the human animal is alive. Finally, the person is the human animal who experiences more complex mental states, such as the ability reason.

The animalistic viewpoint implies that one does not need functions of the mind, such as rationality, to have a persisting identity. Mrs. A would have, therefore, been considered to have the same identity before and after the onset of her condition, as her physical brain and consciousness persisted throughout her life, whether or not her cognitive ability deteriorated. The directive would then have been carried out on the same person who wrote it. Under these premises, a human animal lacks certain mental properties possessed by the complete ‘person’; to equate this with the case at hand, the ‘person’ Mrs. A would have written the directive with the intention that she would lose parts of her mental faculties which she had at the time, and that the directive would be enacted on her human animal. Although she may not have been the same person as she was when she wrote the directive, she still possessed the same identity according to this theory, therefore potentially justifying the decision of the physicians to carry out the directive.

Yet, this does not provide a reason for her change of mind to not be taken into account. If Mrs. A’s identity was unchanged, it is reasonable to assume the wishes she held simply changed and should have, therefore, been respected. Furthermore, although the human animal she constitutes is tied to her identity due to their persistence conditions (if the human animal were to cease to exist, so would the identity connected to it), I believe that her decision to go through with the directive or not should be seen as independent of this. Choosing whether or not to undergo EAS is a decision involving reason, which a person is capable of, but a human animal is not. Suppose one assumes her personhood is impacted due to Alzheimer’s effect on her rationality. In that case, the directive should still not be carried out on the remaining human animal, as the decision-making process involved came from a function of the person separate from the identity which remains. Suppose one assumes her personhood is not impacted, as she is still exhibiting some rational behavior. In that case, her wishes towards the end of her life should have been respected, as they would have been made rationally by the same identity. Regardless of whether she is assumed to have held different identities or not, the decision to conduct EAS would not have been ethical.

Broader implications

The use of AEDs in cases of neurodegenerative conditions can lead to complex, challenging situations like Mrs A’s, because of which it is not permitted at all in nations such as Canada (although their introduction has been discussed in parliament). Medical Assistance in Dying (MAID) is permitted only for patients who can give informed consent on the day of the procedure (Government of Canada, 2024), meaning that dementia patients may only undergo the procedure during the early stages of their condition. This legal framework relies on the belief that the present self’s wishes must be prioritized, but eliminates the emergence of the ‘then-self vs. now-self’ problem altogether; the post-fragmentation version of a patient would never exist, thereby eliminating the chances of conflict between a past and present self’s wishes and ensuring EAS is conducted on the identity which desires it.

Leila Bell, a Canadian citizen, was diagnosed with Alzheimer’s disease at 82 years old. In an interview with Frangou (2020) for The Guardian, she detailed her experience deciding to undergo MAID. She highlighted her certainty that MAID was the course of action she wished to take, and appeared to be happy as she passed, reportedly smiling and expressing gratitude before her death. Yet, she stated that she felt ‘forced’ to make the decision earlier than she would have liked, to avoid her condition progressing far enough that she was unable to decide at all – before her passing, Bell hugely advocated for the introduction of AEDs for patients suffering from neurodegenerative conditions. Bell’s case demonstrates another consequence which arises from the complex issue of EAS and neurodegenerative conditions; not using AEDs, although avoiding involuntary EAS, can lead to patients ending their lives earlier than desired. This demonstrates how, despite their potential for ethical implications, AEDs still provide the best possible solution for patients’ lives to end on their own terms.

Conclusion

Although AEDs may result in situations with complicated ethical implications, they are still incredibly valuable for patients facing neurodegenerative conditions, and currently the most effective means to maintain a patient’s autonomy and preserve their right to die with dignity. Exceptional situations such as Mrs. A’s can, and have, occurred, however, highlighting the importance of physicians’ thoroughness when analyzing a patient’s wishes. While the desire to undergo EAS often does not change after the onset of one’s condition, if a patient does exhibit a change of heart, I strongly believe it is only moral to respect this decision and supersede the terms of the AED, as it is the patient’s current self who will be affected by it. Considering the strong role of memory and cognitive ability in this issue, I believe philosophical theories of personal identity are best suited to evaluate this – both the psychological continuity theory and animalism can be used to support the stance that, in a case like Mrs. A’s, EAS was immoral and should not have been conducted. Whether by viewing a dementia patient’s life as two distinct periods in which two different identities lived, or as one identity which faced significant change, the same conclusion can be reached: that a patient’s most recent wishes ought to take precedence over their previous ones.