Who am I? Self-Fulfilment and the Persisting Evolving Self: Decision-Making and Ireland’s Assisted Decision-Making (Capacity) Act 2015

Martha: A Case Study

The case study of Martha acts as a lens for exploring how law and ethics can both construct and silence personhood.

Ethical Foundations: Gewirth’s PGC

An initial question arises as to why the PGC should be used in this article as a normative framework for analysing an application of Irish law on capacity. Notwithstanding the fact that the PGC is less prominent in recent legal discourse than alternative rights-based reasoning (including liberal, feminist and disability-rights frameworks), the PGC, nonetheless, offers a distinctive advantage for analysing supported decision-making regimes because, according to it, rights are derived from the standpoint of agency itself. This framework is useful because it allows an analysis of moral obligations to flow directly from the idea of agency itself and not from principles that are externally imposed. Gewirth’s approach does not begin with externally asserted moral values. Instead, he asks what commitments are logically required of agents to understand themselves as acting freely and purposively in the world. ²¹ Gewirth’s argument develops dialectically. Agents understand themselves as pursuing worthwhile purposes. In so doing, they are rationally committed to recognising that freedom and well-being (the generic conditions of agency (GCAs), which are explained in more detail below) are necessary conditions for the pursuit of any purpose whatsoever. ²² These are the GCAs that every agent must claim as rights for themselves. ²³ The PGC requires agents to recognise that these same generic rights must be granted to all agents, due to the fact that no rational basis exists to privilege one agent’s claim to the GCAs over another’s. ²⁴

The ADMCA and the PGC in Practice

O’Neill and O’Keefe show how making decisions for older people about nursing home care may be in their best interests because of considerations such as safety, but other interests are often insufficiently considered, such as the person’s right to take a risk, to boldly go where others may have foolishly gone in the knowledge that so doing is what they really want to do, need to do, but the doing may not necessarily be the most sensible action. ⁴⁴ The right to be unwise in judgement, particularly as it applies to the strong need and right to remain in one’s own home, is not embedded in an autonomy-maximising model. I have illustrated elsewhere how decisions that are made as a result of concerns about patient safety, which are made in the best interests of the patient, have the potential to upend the dearest wishes of the person who is often last in the queue when it comes to decisions relating specifically to them. ⁴⁵ Can the new Act be true to the self of Martha and allow for the flourishing of her wise and unwise judgements?

From Persisting Self to Persisting Evolving Self in the Iterative Journey Towards Self-Fulfilment

I have written elsewhere about self-fulfilment and what I call the persisting self. ⁴⁹ In that discussion, I outlined how the personhood of the person at the end of life or mid-way through an incapacitating disease does not exist in and of itself at that point in time. Rather, a persisting self exists in which the deeply held beliefs, principles, desires, wants, and aspirations of the person endure into an infinity of time, encompassing the self that endures through the bivouacs of life.

As discussed, self-fulfilment involves the legitimate search for what is deeply desired. It equates to striving for the attainment of deeply held desires, wants, convictions and goals that are embedded historically and emotionally, psychologically and, occasionally, spiritually in the persisting self. Gewirth identifies two forms of self-fulfilment. He calls the first aspirational self-fulfilment, and this comes into play when the agent objectively recognises the facts that exist in the process towards the achievement of purpose. ⁵⁰ The second iteration of self-fulfilment is capacity self-fulfilment. ⁵¹ This involves choices at two levels: the choices the agent makes and those they ought to make if they were to act in line with, in my view, their persisting self or in accordance with their deeply and dearly held beliefs.

Gewirth notes that different interpretations of the self, whether defined by religion or philosophy, are in some way modified by time, history, geographic space, gender, race, and other variables. Nature, destiny and values, according to Gewirth, impinge upon these iterations of the self because their genesis is non-stagnant and is susceptible to the vagaries of contextual factors. ⁵² The PGC does not allow for that susceptibility because it is a supreme moral principle and the interpretation of self, and the journey towards the fulfilment of self, to the realisation of dreams and aspirations inherent in the vivification of personal, deeply held aspirations is a finite stance where the journey is founded on principles of human rights and the GCAs lie at the heart of the voyage to personal thriving. All variables, including gender and race, are accommodated within Gewirth’s PGC. There is an acceptance within the PGC that different humans have different histories, different geographies, different genders, but they are linked by the same striving towards the generic features of successful action. ⁵³ Gewirth argues that

The self that enters into self-fulfillment is a continuing or enduring embodied entity that is aware of itself as a distinct person, that can anticipate a future for itself, and that has desires on which it can reflect. It can evaluate these desires on the basis of second-order desires that take account of its relevant abilities or capacities. ⁵⁴

Every person has rational autonomy. They are self-controlling, self-developing agents who relate to other persons based on mutual respect and cooperation. Gewirth says that agents are not dependent, passive recipients of others. ⁵⁵ There is a duty upon agents to refrain from hindering the rights of others and to provide needed assistance to an agent so that they are recipients of proximate necessary preconditions of self-fulfilment. There is no positive duty to self-fulfilment. The duty that exists is in refraining from hindering the self-fulfilment of others. ⁵⁶

The concept of self-fulfilment is intrinsically linked to the concept of personhood and to the value that is placed upon what I have argued elsewhere is the ‘persisting self’: the self that exists not in a linear, diminishing way, but has existed and will exist into the future as the essential self. ⁵⁷ The romantic poets and philosophers, such as Rousseau, had the idea of the self linked to a beginning goodness and to a persistence throughout life, an innate nearness to the divine. ⁵⁸ It is this persisting self that was threatened in the pre-reform approach to capacity and best interests. With the PGC fully aligned, others could act for the vulnerable person without being sufficiently mindful of the persisting self or of the need for the person to lead a purposeful, voluntary life that leads to self-fulfilment. Under the old regime, Martha’s best interests would have been considered, albeit from a distance, insofar as best interests were determined with the adage of paternalism, where others could determine what was good for Martha.

I now recognise that there was a gap in my previous work on the concept of the persisting self. ⁵⁹ A subliminal presumption was made in my argument that the self, in some way, remained unchanged. There was a lack of recognition in this finding that, yes, the personhood persisted, but I now hold that personhood was not stagnant. The diminishing cognition and cognitive capacity of the person can change over time, with the onset of dementia (or, indeed, other debilitating conditions). As the person’s capacities diminish, so too does their ability to display the characteristics of agency. This means that changes happen to the persisting personhood. Accordingly, the structure of rights attribution, ultimately, also change. Instead of seeing a persisting self as something that persists in an unchanged way into the future, we see a persisting evolving self where the essential personhood exists, but the form of protection of the generic rights to which the agent is entitled also changes and evolves. Conceivably, the years bring wrinkles on the self as well as the manifestation of the self through action. The persisting evolving self allows for changes in the characteristics of agency in ways that perhaps the persisting self didn’t.

Essentially, the persisting self holds the idea that personhood endures despite diminishing capacity. The evolving self recognises that this personhood is not static. It changes, regresses and adapts as cognition diminishes. The persisting evolving self denotes the continuity of identity and values over time. This continuity occurs alongside the transformations that vulnerability and cognitive decline bring to all aspects of the person. My view of the persisting evolving self differs from static, persisting models because it acknowledges that regression and adaptation are integral to personhood. They are not threats to it, but are inherent elements of the striving towards life itself and self-fulfilment within that life. Ultimately, the idea of the persisting evolving self provides a bridge between Gewirth’s rights-based agency and the lived reality of people living with dementia, whose self endures, persists and evolves in the autumnal shadows of their lives.

The persisting evolving self is an integrative concept in which the two concepts of self are actively integrated: the persisting self relates to the core identity, values, and relationships that endure. The evolving self implies a change in the characteristics of agency. There is an important implication if this definition of the self is accepted: legal and ethical frameworks must adapt to the evolving capacities of the person while respecting the persisting personhood. Thus, the persisting evolving self remains the same person, differently expressed. How does this perception of the self find congruence with other definitions of the self?

How does this version of the self find congruence with other philosophical perspectives? Much of Parfit’s early work concerns the problem of personal identity and challenges the embedded assumptions that identity is dependent on biological and metaphysical continuity. ⁶⁰ Parfit responds to conflicting disagreements about the place of philosophical perspectives on the self, including reductionism, consequentialism and contractualism, but his response does not fully resolve these competing debates. ⁶¹ Parfit’s work on personal identity challenges the idea that a fixed and indivisible self exists. He argues that what matters most is not strict numerical identity but relations of psychological continuity and connectedness across time. This account is significant in the context of dementia, where psychological continuity may diminish although the individual remains the same biological person. The concept of the persisting evolving self presented here differs from Parfit’s reductionist approach by retaining the moral centrality of agency. While Parfit shows that identity may diminish over time, the Gewirthian framework maintains that persons remain the bearers of moral status because their characteristics of agency persist in varying degrees. Equally, bioethical accounts such as those offered by Dresser and Jennings emphasise the relational and narrative dimensions of personhood. In these perspectives, the self is understood as emerging through social relationships, shared narratives and recognition by others. The persisting evolving self does not deny the importance of relational context, but locates the moral grounding of personhood in the internal characteristics of agency identified by Gewirth. As those characteristics of agency evolve over time, the way in which the person’s rights are protected also evolves, shifting from will-rights to interest-rights as the manifestation of the characteristics of agency diminishes.

In the perspectives offered by Dresser and Jennings the change that happens to personhood is, for the most part, socially embedded. External relationships, external variables that have an impact upon the self: family relationships, societal mores and values all interact with the change in persona of the person in cognitive decline. The alternative perspective offered by the persisting evolving self suggests that, while relational factors remain important, the persisting evolving self locates the primary normative grounding of personhood in the characteristics of agency. The evolution process arises internally, as the characteristics of agency displayed by the person change as they move from a person with will-rights to one with interest-rights. In this way, the persisting evolving self offers a synthesis between philosophical accounts of identity and a normative framework grounded in the PGC. It explains how a person may remain morally significant throughout cognitive decline, even as the forms of protection owed to them change. This provides a conceptual bridge between philosophical debates about identity and the practical operation of supported decision-making regimes, such as the ADMCA. The empowering ethos of the ADMCA is, in many ways, aligned with this because the relevant person’s voice is heard and can be amplified if the supportive structures function as envisaged.

The Persisting Evolving Self and the Tiered Approach of the ADMCA

To what extent does the ADMCA recognise, validate and apply the idea that the human personhood is comprised of a persisting evolving self with related rights? Why is this application important? The tiered approach involves applying the evolution of the relevant person to their self. It is both persisting and evolving. It traces the reduction in the characteristics of agency, as capacity diminishes, in terms of the level of support or interventions needed to enable and empower the person to still achieve self-fulfilment within the confines and the strictures of that diminishing capacity.

In support mechanism Tier I the relevant person will probably still exhibit characteristics of agency, but these characteristics are possibly reduced. If they have sufficient characteristics of agency, the relevant person will still have will-rights and still be able to make foolish decisions, as long as they do not interfere with the generic rights of others. In Tier II, the relevant person may still exhibit the characteristics of agency, but there will likely be a reduction in the manifestation of these characteristics. Unwise decision-making that is in line with will and preferences can form part of the decision-making process, as long as the rights of others are not compromised.

Tier III (appointment of a DMR) involves a clear reduction in the characteristics of agency is identified. At this stage, will-rights will decline, and the person’s generic rights are mainly protected through interest-rights, which grounds a duty of protection. This is the point at which will-rights diminish, and interest-rights are dominant. A significant change exists here. Obviously, a more paternalistic approach is adopted, and the best interests of the relevant person are implicitly protected in a manner not done in Tier I and Tier II, but will and preferences are still crucially important.

The tiered model of the Act can be seen as a legal indicator of this, that individuals hold on to an enduring identity while also undergoing various forms of transformation as their cognitive abilities weaken, since it provides graded forms of support that respect and vindicate personal voice and agency at each Tier. The ADMCA’s tiered framework calls on decision-makers to remain attentive not only to the person’s past wishes but also to the understated, evolving ways in which preferences and values continue to be expressed, albeit in changing ways. Thus, the persisting evolving self links Gewirth’s concept of agency with the lived reality of diminishing capacity.

Let us look at how the ADMCA replaces the best interests view of adhering to or rejecting the decision of the relevant person with a will and preferences model. This means that the arguably substituted-judgement practice, which sometimes forms part of a best interests model, is replaced by a decision-making process that supports and enables the realisation of the relevant person’s will and preferences. It seems to me that the ADMCA is fully and seamlessly aligned with this model. It is equally aligned with the attainment of self-fulfilment in the following manner: (1) The Act endorses will and preferences, which are equal to those striven for to thrive in self-fulfilment; (2) The ADMCA clearly mirrors the dual steps of self-fulfilment. It fulfils the criterion of aspirational self-fulfilment by clarifying what steps are required to achieve the desired purpose. The clarity of these steps is to be seen, for example, in the manner in which the very specific roles and responsibilities of the various decision-makers in the Act are outlined. ⁶²

The Act outlines the relevance to healthcare workers. It provides a clear definition of will and preferences and, in its guiding principles, outlines its understanding of ‘unwise’ decisions. It sets out the support arrangements under the ADMCA, the way they are put in place, and the role/non-role of lawyers in that process. The Act clearly defines and delineates the specific roles of the decision-making assistant, the co-decision-maker, and the decision-making representative. It explores the decision-making arrangements which people can plan for in the future, including Power of Attorney and Advance Healthcare Directive. The role of the Designated Healthcare Representative is set out. All these constitute the ‘facts’ that the person now knows and comply with their aspirational self-fulfilment. The ADMCA endorses the capacity self-fulfilment of the relevant person. Many of the choices people make in challenging circumstances involve making decisions about meaningful aspects of life or care. For people to whom this Act applies, making these choices is now possible through the tiered availability of enabling support. This support enables people to make choices at that time that reflect their deeply held beliefs and values and their essential, persisting personhood (Assistant decision-maker/Co-decision-maker).

According to the Act, a decision-making assistant can be appointed to help them make decisions about personal welfare, finances and property. Section 14 sets out clearly the functions of the assistant, and s14(2) clearly asserts that the assistant ‘shall not make a decision on behalf of the appointer’. The ADMCA allows for the appointment of a co-decision-maker who can make decisions jointly with the appointer. Section 19(1)(b) sets out how this person advises the appointer and, importantly, ‘ascertains the will and preferences of the appointer’ and they are charged with assisting ‘the appointer with communicating the appointer’s will and preference’.

Equally, the ADMCA supports the choices people ought to make, in line with Gewirth’s self-fulfilment, insofar as, when a person reaches a stage where a decision-making assistant and/or a co-decision-maker are not appropriate, a representative can be appointed by the court under a Decision-Making Representation Order. ⁶³ The person appointed is usually one the patient knows and trusts, and their role is to ‘make certain decisions on behalf of a person if they are unable to make these decisions for themselves’. They must take the wishes of the relevant person into account and deal with matters relating to their welfare, property, and financial and familial affairs. This is an enabling device that permits the person to make choices by having choices/decisions made for them by court-appointed representatives. Of course, the potential for paternalism still exists. The possibility that ‘sensible’ choices will be made for the relevant person and not ‘by’ the relevant person, but, at this stage, such possibilities become almost unavoidable, and the emphasis placed in the ADMCA throughout on working in accordance with the relevant person’s will and preferences surely obviates or, at least, reduces the potential for paternalism to apply.

Self-Fulfilment and the ADMCA

How does the law allow for the thriving that is part of self-fulfilment? Gewirth argues that the PGC dictates that no obstacles be placed in the way of agents’ self-fulfilment and that assistance should be provided to them towards that end. Such assistance is now to be found in the provisions of the ADMCA, in the tiered approach adopted to support the relevant person in decision-making processes. Of course, self-fulfilment is not completely achievable. It remains something that is slightly beyond the rainbow, slightly beyond the human grasp. If the final destination of self-fulfilment is to make the best of oneself, then Gewirth believes that this is a process, rather than a finished product. According to Gewirth, the agent

can use its freedom and well-being in ways that positively develop both its capacities to achieve desirable purposes and its actual achievement of these purposes. There is no climactic Nirvana, but there can be sequences of self-improvement that overcome the effects of alienation and achieve cherished values. One’s best is never finalised, but it can be more fully approached. ⁶⁴

I think that the ADMCA provides a good vindication of a process-driven, collaborative journey towards giving voice and constructive action to the will and preferences of people who may, perhaps, have had their voices muted by diminishing capacity. Let us look further into how the Act promotes or, potentially, prohibits self-fulfilment.

A person over 18 years of age with a trusting relationship with the relevant person can be appointed where the relevant person believes their capacity is in question or may shortly be in question. ⁶⁵ A co-decision-maker, equally, includes a person aged 18 or above who is appointed by a person who believes that their capacity is in question or may shortly be in question. ⁶⁶ Interestingly, this means that for these two options, the relevant person self-declares the need for support. There is no graduation in the specific need of the relevant person, who may require either an assistant decision-maker or a co-decision-maker. In either situation, there is no requirement for the relevant person to fail the functional test for capacity. This does allow for freedom for the relevant person and promotes collaboration when the support request comes from the relevant person.

The role of capacity law should be to ensure the attainment of the self-fulfilment of citizens. Through the ADMCA, support mechanisms are in place to ensure that the processes are there to enable the achievement of self-fulfilment. How do the different types of supports comply with self-fulfilment/the PGC? Under the Act, at certain times, the three approaches should allow the relevant person to achieve their self-fulfilment through the support mechanisms in place. The assistant and co-decision-makers are unusually involved at an earlier stage regarding loss of capacity. The relevant person still has some capacities/abilities to be involved in the decision-making process, to have their self-fulfilment realised. When a decision-making representative is needed (minus the technicality that will be addressed), the law gives the relevant person a voice through the representative, allowing their will and preferences to be brought to the fore. When is the representative appointed, and are there any difficulties around that? There are difficulties when the representative is appointed in situations where an assistant decision-maker or a co-decision-maker cannot be appointed.

Are the tiers clear, or how does the relevant person know at what stage they are at? The same criteria apply to assistants and co-decision-makers. Greater clarity is needed on when or why you would move from assistant to co-decision-maker. There is more clarity in relation to the DMR because, in that case, you have to fail the functional test (i.e. lack capacity) except when it comes into play in the case where an assistant or co-decision-maker cannot be found and where the Co-Decision-Maker is not suitable. In situations where the relevant person lacks capacity, and the DMR kicks in, that approach is sensible. The problem relates to the technicality–situations where the assistant or co-decision-maker cannot be appointed, and the court-appointed DMR needs to get involved.

How does the persisting evolving self relate to all of this? There is always that conundrum–all these different supports/approaches are getting to the core of who the person is (except in the situation mentioned above, and even there, pragmatism plays a role because if there is no one willing to act as an assistant/co-decision-maker, then at least there is someone appointed (with the relevant skills) to represent the relevant person and to act, as far as possible, in accordance with the relevant person’s will and preferences, although this may be hard to decipher at times). The mechanisms are there in a way that allows for the attainment of self-fulfilment. Can the persisting evolving self be re-explored to allow for the different interventions happening here? Arguably, the technicality does not promote the self-fulfilment of the persisting evolving self (but it is a good-faith attempt to act pragmatically for the relevant person when no one else is able or willing to stand up for him or her). Proper support systems are needed to allow the persisting evolving self to flourish and reach self-fulfilment. This Act allows for the deeply held wishes of the relevant person to be respected and valued, pushing him or her into the realm where the real self can be realised.

Thus, the tiered support model of the ADMCA is aligned with the persisting evolving self. Each tier corresponds to a stage in which agency is reduced but not erased. The applicable rights shift from will-rights to interest-rights as the characteristics of agency are diminishing. The evolving part of selfhood is not reflected in a binary capacity/incapacity model, but in the allocation of graduated supports whose gradation complies with the diminishing evolution of the characteristics of agency seen from the vista of personhood, which is still retained but has evolved.

The ADMCA and the PGC: Working in Tandem

The assessor fills in a capacity statement under part 5 of the Act. ⁶⁷ This guidance document provides a template for completion that lists exhaustively several important variables that reflect a good faith attempt to ensure that the relevant person’s state of capacity and ability to make decisions are tabulated in a manner that appropriately identifies the supports given to aid decision-making, the specific decision-making/communication capacities of the relevant person, and details of the past and present preferences and values of the relevant person. This guidance is clear, succinct, and manifestly recognises (1) the state(s) in the decision-making process inhabited by the relevant person; (2) supports needed; and (3) vindicates the importance of the relevant person’s will and preferences. It goes some way towards filling the gap left by the ADMCA’s lack of clarity on how the relevant person moves from needing different types of support. From a Gewirthian perspective, this guidance is aligned with precautionary reasoning. The ADMCA recognises this precaution because s38, which appoints a DMR, entails the provision of a level of support that may be paternalistic in application but still has validity. It recognises that the incapacitated person doesn’t have the same level of characteristics of agency as the person with capacity, and the courts owe the relevant person in these circumstances a commensurate duty of protection. This does not advance the idea of different kinds of agency. It refers, instead, to differing degrees of manifested characteristics of agency. There are just different levels of possession of the characteristics of agency, which give rise to different forms of protection.

Martha Revisited Under the ADMCA Through the Lens of the PGC

Let us now reimagine how Martha’s progress or regression in life could or could not have been reconceptualised within the active operation of the ADMCA. Let us determine if this journey is aligned with Martha’s persisting evolving self.

Martha, before dementia, is an apparent agent with fully intact will-rights. During the stage of early dementia (Tier I), she needs some assistance, but she articulates her preferences. As her dementia progresses, her characteristics of agency are weakening. The Co-Decision model is appropriate for her (Tier II). When Martha’s dementia becomes advanced, her interest-rights are safeguarded via the DMR (Tier III). There is a duty of protection owed to her. Thus, Martha’s evolving self is protected at each tier, but her self is always recognised as persisting.

The presumption for pre-dementia Martha must be that she was an apparent agent. It is only when she demonstrates a lack of characteristics of agency that we can determine that she is an ostensible non-agent. It may be that Martha exhibits some characteristics of agency in relation to some tasks but not to others. This is in line with the functional test for capacity. The functional test ultimately complies with the PGC’s concept that, even if Martha lacks characteristics of agency, she still owed a duty of protection.

In Tier I, the appointment of a Decision-Making Assistant implies that Martha is largely agential. She still possesses many of the characteristics of agency. In Tier II, when a Co-Decision-Maker is appointed, it can be accepted that Martha displays fewer characteristics of agency, but her unique voice is preserved. In Tier III, when the DMR is appointed, Martha has interest-rights only. Some degree of paternalism is unavoidable here, but this is mitigated by the obligation to adhere to will and preferences principles.

How can this legal shift be conceptualised and vivified through the depiction of the experience of Martha in the context of her persisting evolving self? Martha has been married to Henry for 35 years. Henry and Martha jointly recognise that her memory is slipping, her cognitive processes are declining, and her ability to make decisions based on her long-held beliefs, practices and values is receding. Martha, as she is now, still retains the essence of herself: her vivacity remains the same, her interest in country music remains the same, her enduring and abiding love for Henry remains the same, but the expression of it is changing in some respects. She forgets that he likes wearing patent black shoes, but she remembers the brown shoes that he wore on their wedding day. Her grasp of the present is not as acute as her grasp of the past. The essence of her personhood is the same certainly, but is evolving, not in a linear way, but in a two-steps forward, three-steps backwards kind of way that is difficult to quantify, difficult to tabulate, but Martha is as she was and as she will become, but there is a shift, an evolution in the persisting (non-changing) self.

Somewhere, Martha and Henry recognise that the status quo is shifting irrevocably and that Martha’s way of processing the world is changing, not diminishing, not regressing, but evolving. They have now decided that something is needed to help them jointly make decisions. They know about the ADMCA. They go to the website and fill out the paperwork so Henry can become a co-decision-maker. They realise that the assistant decision-maker’s role has probably passed, and that a new stage has begun in which she and Henry will make decisions that have legal standing and help them navigate the difficult pathways ahead.

Time goes by, and Martha’s autumnal goodbye to her capacious self is becoming more apparent. She, as the relevant person, cannot understand information relevant to particular decisions, she cannot retain the information long enough to make a voluntary decision, she cannot use and weigh that information as part of the decision-making process, and she cannot communicate her choices. Thus, she does not satisfy the functional test for capacity. The assessor comes to the conclusion that, even with the assistance of Henry, in his capacity as co-decision-maker, Martha lacks the capacity to make the specific decisions. It is also determined that she is unlikely to recover her capacity to make the relevant decisions. The doctor has a chat with Henry about this. Henry remembers the smile on her face when they first met, the way she practised the piano for hours on end, her laughter, her empathy with people, the way she dragged her feet on a long walk, unenthusiastically accompanying his journey. He knows Martha and loves her, but he also knows that his ability to take the next step towards becoming a DMR is limited by his declining agility and health.

Their son, Roy, who is 34, lives locally and has a wonderful relationship with his parents; he is happy to take on this role in his stead. Although using a mechanism, such as Enduring Power of Attorney or Advanced Healthcare Directive, could have offered Martha a means of preserving some autonomy, the rapid progress of her condition meant that there was not sufficient time and she did not have sufficient commitment to establishing such arrangements. For Roy, the ADMCA provides a framework that responds to circumstances where formal advance planning had not occurred. The court is content to appoint him as DMR on the basis that he is Martha’s son, that he is aware of the complexity of the decisions ahead, and that he shows the ability and interest to engage with them. There is no apparent conflict of interest, and he meets the technical requirements regarding who should not be appointed. Crucially, he knows Martha’s wishes, values, and the force of her persisting evolving self; he knows and loves that self, and he is prepared and willing to make decisions on her behalf that reflect and are true to her will and preferences. Roy takes on this role and responsibility. Roy has lived beside his mother for all his adult life. He understands her commitment to the local church and the religious principles by which she lived her life and by which she would want to live out the rest of her life. He understands her financial situation and is prepared to work with the court to make such financial provision for her care as is appropriate. He knows her friends and her interests. He is aware of her past principles and all that was central to her spiritual and physical well-being. He is living her present alongside her and is committed to being her loving advocate into the future.

In this regard, Roy is working to ensure that Martha attains self-fulfilment. At this stage, Martha’s diminishing characteristics of agency mean that she has interest-rights. She is still owed a duty of protection under the precautionary thesis, and the role of the DMR fully fulfils that protective role. Gewirth says that the GCAs are objective variables ‘from which true moral judgements are derived’. They are not arbitrary. ⁶⁸ They pertain to all actions and the requirements that follow them are binding on all agents. Knowing that Martha has interest-rights means that this is a consequence. That is a logically necessary requirement, but it sets obligations for agents who can grasp their necessity. ⁶⁹ Martha may have diminishing capacity, but there is an obligation on those who interact with her to accept their duty to protect her and to vindicate her interest-rights.

We have, thus, seen in Part II that the Act broadly is aligned with the PGC. Challenges, however, exist in the application of the Act at the levels of law and society, as well as in the current model of care for the person with diminishing capacity. For people who lack capacity, the road to self-fulfilment is not as straightforward as it is for those who have capacity, but it remains a path nonetheless. Just because people lack capacity does not make them less worthy of, or less deserving of, self-fulfilment. The ADMCA gives primacy to will and preferences and so maximises the opportunity for the exercise of the generic rights to freedom and well-being. For those Court-mandated representatives (DMRs), it could be argued that there is an interference with their rights in the implicit paternalism implied by this course of action. However, this intervention is aligned with self-fulfilment because it gives the relevant person who has interest-rights the protections owed to him under the precautionary thesis, and it supports self-fulfilment in the way in which it promotes the persisting evolving self. If the relevant person lacks the capacity to make decisions, the decisions don’t go away. They have to be made in a manner that respects the core of the relevant person, the persisting evolving self of the relevant person. Although the relevant person only has interest-rights, the representative’s duty is to safeguard the relevant person from harm and to make decisions that are inherently related to the relevant person’s core wishes, beliefs, and values.

Since the ADMCA has only come into operation recently, empirical evidence in relation to its practical implications is quite limited. Initial empirical analysis of the Act is limited, but academic commentary has pointed to both the transformative potential of the Act and the practical challenges involved in establishing a complex decision-support infrastructure. ⁷⁰ Doherty and Matthews argue that, since the implementation of the ADMCA, there is ‘significant legal uncertainty’ in the treatment of patients who lack capacity in acute hospital settings. ⁷¹ They identify specific gaps where the ADMCA or the Mental Health Act 2001 do not provide authority for intervention: eating disorders where feeding is required, refusal of life-saving treatment and unsafe discharges, and potentially patients who require immediate life-saving treatment. ⁷² In these circumstances, the Inherent Jurisdiction of the High Court has become the default mechanism. They argue that this raises issues of consistency, cost, proportionality, and delay. ⁷³ According to them, the ADMCA is poorly linked to the interface of the Mental Health Act 2001, especially for patients who are detained under the 2001 Act’s provisions, but lack the capacity to consent to treatment. This gap also has implications for those who have a mental illness and are treated in an acute hospital. ⁷⁴ From a practical perspective, Doherty and Matthews point out that rollout of structures, such as the DSS was slower than expected ‘with backlogs in registering decision-support arrangements’. ⁷⁵ They say that the ‘more cumbersome features of the ADMCA have not been frequently required within the acute hospital setting’ and the shift from best interests to will and preferences ‘has been more subtle than initially thought, with patient preference already considered part of pre-existing best interests decision-making’. ⁷⁶ The authors claim that the most common reasons for relying on ADMCA procedures include when ‘a patient appears to assent to care or discharge planning, but whose family objects, perhaps with concerns about risk or finances’. ⁷⁷ The fact that the High Court now has to step in and use its Inherent Jurisdiction is problematic: this, according to Doherty and Matthews, ‘has led the High Court, to some extent, to recreate the Wardship provisions through its Inherent Jurisdiction’. ⁷⁸

Donnelly recognises this change in Irish law ‘will at times give rise to challenges, conflicts and tensions’ that will have to be resolved. ⁷⁹ She acknowledges the positive way in which the voice of the relevant person is now being listened to more acutely and that the representatives can now act as appropriate conduits of the relevant person’s message. ⁸⁰ The hearing of voice is an important way of humanising the relevant person in court proceedings, but Donnelly points to the need to amplify this voice through meaningful interventions. Notwithstanding the positivity surrounding this new Act, Donnelly identifies the fact that the relevant person rarely has a physical presence in court proceedings. In fact, O’Connor J explained in In the Matter of AB ⁸¹ that in only 7% of court proceedings is the relevant person’s voice actually heard. ⁸² Normally, this person is represented by someone else, who is working judiciously on behalf of the relevant person, but lacks the physical presence of that person in the Court. Hayland J in the case of In the Matter of KK alludes to the importance of the voice of the relevant person. ⁸³ This may be of particular relevance in complex cases involving property and assets, where often the siblings, due to perceived conflicts of interests cannot act as representatives and the voice of the relevant person may become occluded by the cold objectivity of external representatives, who may not have a full historical understanding of the relevant person’s life history and embedded will and preferences. Donnelly asserts the need to examine and include data pertaining to the relevant person’s voice. ⁸⁴ This is of crucial relevance as the ADMCA is evaluated and assessed in terms of future implementation.

This emerging analysis is pointing an acerbic eye on practical aspects relating to the implementation of the ADMCA. The passing of time, emerging cases and, perhaps, some amendments in relation to improving the connection between the ADMCA and mental health law may address these challenges. These challenges do not negate the validity of the ethos and the Gewirthian endorsement of the central tenets of act pertaining to will and preferences and supported decision-making. These challenges do, however, raise questions about whether the ADMCA, as implemented in practice, fully realises the empowering potential of its inherent intent and purpose.

The analysis offered in this article aims to contribute to the ongoing evaluation and development of the application of the Act, and as new data come to light, there will be a closer bridge between theory and practice.