I. Introduction
The exercise of self-determined choice by competent adults is a cornerstone of medical law and underpinned by respect for autonomy. Competent refusal of treatment must be honoured by healthcare providers even if this leads to the otherwise avoidable death of a person.
It has been suggested that autonomous self-determination should extend even further to include physician assisted suicide and voluntary euthanasia.Footnote 1 In one of his last publications the late Professor David PriceFootnote 2 offered a spirited defence of the exercise of autonomy in circumstances such as these. His non-relativistic approach aligns readily with the notion that intrapersonal perspectives serve to better protect individual interests. The basis for this is autonomy, which Price then elevates to the status of a “futuristic paradigm” in the context of allowing a positive “choice” for euthanasia.
Price's thesis prompted us to reflect further, and in some depth, on the concept of autonomous self-determination specifically for competent refusals of life-sustaining treatment, a context where it applies as a consummate principle. In our view the application of Kantian autonomy as the paramount model is questionable as it fails to capture the more subtle nuances of self-determination in situations such as these. We have conceived an alternative model which we term “holistic determination for oneself” and this is posited as a potential contender to the Kantian construal of autonomous choice. In this paper we present the theoretical basis for our proposed paradigm.Footnote 3
Our arguments are presented as follows. Section II considers autonomous self-determination in terms of Kantian orthodoxy. We then present what we have termed the “Alpha Beta conundrum” based upon two situations inspired by clinical events whereby prospective refusal of treatment posed several pragmatic challenges. Section III analyses the subtle and nuanced changes that have emerged through models of collaborative decision-making. These have already encroached upon the understanding of autonomy in its traditional sense. Section IV contains our conceptualisation of self-determination as “holistic determination for one-self” and in so doing we draw upon Kantian conceptions of autonomy and heteronomy. Our paradigm is positioned as an integrated principle that serves equally to empower self-regulation. Our conclusions are presented in Section V.
II. Autonomous Determination
A. Autonomy: The Traditional Paradigm for Competent Refusal of Treatment
Autonomy is the bedrock of medical law. It is trite that a competent person has the right to refuse even life-saving medical treatment. The right to self-determined choice in this context must be respected irrespective of whether the motives behind that choice are rational, irrational, unknown or even non-existent.Footnote 4 Provided that a person has capacity then the principle of sanctity of life must yield to autonomous self-determination in respect of refusal of life-saving medical treatment.Footnote 5 A competent person's refusal must be obeyed even if patently contrary to her own best interests (as objectively assessed) and even if it is plain that an adverse outcome may result.
The law also robustly protects the competent adult's prospective right to refusal of treatment.Footnote 6 In the face of perceived ambiguity it has been argued that a presumption should lie in favour of respecting an advance refusal rather than in favour of preserving life in order to protect autonomy.Footnote 7 In English law respect for prospective autonomy is enshrined in the Mental Capacity Act 2005 through a range of safeguarding provisions.Footnote 8 Prospective autonomous choice is protected by way of advance decisionsFootnote 9 as well as the ability to create lasting powers of attorney.Footnote 10 Thus, autonomy is embedded in law as the paramount principle that underlies self-determination for refusal of medical treatment either contemporaneously, or prospectively.
Autonomy is generally understood as self-governance, self-regulation or self-direction. This concept has been linked with notions of liberty, dignity, integrity, individuality, independence and freedom from obligation as well as the absence of external causation.Footnote 11 It further encompasses privacy and the right to freedom of choice.Footnote 12 The key element of the concept of freedom is absence of external influence in that one's action or choice is one's own.
In modern Eurocentric thinking autonomy is derived predominantly from Kantian philosophy.Footnote 13 Kant's thesis is concerned primarily with the non-domination of one's own inclination by those of others.Footnote 14 An agent's self-regulation in accordance with autonomy is (alone) worthy of respect. Self-regulation represents freedom from domination by one's own inclinations as well as those of others. A unique dignity is thereby conferred which is stated expressly as acting in accordance with the universal laws of reason which, for Kant, is the way to free oneself from subjection to the laws of nature. The effect of autonomy is that free action of the will preserves and promotes free activity itself, on the part of the agent, as well as others who might be affected by those actions. Autonomy can be understood, therefore, as a continuing freedom in setting and pursuing particular ends for oneself.Footnote 15 Autonomous agents are those who defy the causality of nature and ground their actions on the causality of freedom.
As observed through a Kantian lens autonomy represents transcendental freedom of the will to choose an end for oneself. Denial of this freedom would mean subjection of oneself to extraneous influence(s) and in so doing would make any subsequent action that flows “unfree” since this would not truly be an action that one wills for oneself.Footnote 16 The paradigm of autonomous action is that this originates in oneself whenever one decides, simply on the basis of considering it. One does not consult desires, or any other empirical conditions, as this would mean subjecting oneself to the causality of nature. Therefore, autonomy arises spontaneously from the rational processes of one's own free will and rationality does not ascribe to any natural force or empirical causality.Footnote 17
Kantian ideology takes this argument one step further: autonomy arising from spontaneous rationality equates with morality and failure to act morally is to act irrationally. The inherent value of autonomy arises from the notion of acting on the basis of a transcendentally free rational will which belongs to the noumenal sphere (of understanding). This ascribes moral value to autonomy.Footnote 18 In this context self-determination arises from a model that underpins autonomy as the general authority by which an action of an agent endows the action as being “good”.Footnote 19 Autonomy is considered to be an essential constituent of agency and is proportional directly to our effectiveness as moral agents.Footnote 20 Therefore only agents acting autonomously (in this sense) deserve moral esteem.
In sum, therefore, an action that is derived autonomously and conditioned upon a transcendentally free will is one that alone acquires pre-eminence in the moral hierarchy. Translated into end of life decision-making (in respect of (refusal of) medical intervention) this means only autonomous self-determination is worthy of moral respect. Whilst this line of argument may seem intellectually seductive, we would beg pause to reflect on whether the paradigm of autonomous self-determination is wholly real in a universal sense, or illusory. One's ultimate desire must be reflective in a knowledgeable way as a normative requirement of internal wants.Footnote 21 There is self-interest in determining one's ultimate desire at end of life which depends upon the nurturing and support of others and requires families and communities to protect and provide for the wellbeing and needs of individuals whenever necessary.Footnote 22 In contemporary society reliance upon the support of others must at least be considered plausible and it seems inevitable that influences such as these might impact upon decision-making. Although a person might reason and perform an action that is exercised autonomously, part of that reasoning might well have been influenced by sensus communis. The universality of traditional Kantian conceptions of self-determination is called into question. There is an urgency to re-consider an alternative paradigm whereby instinctive, sensory and emotional responses that belong to the phenomenal sphere take a degree of precedence,Footnote 23 and this is considered further.
B. The Alpha Beta conundrum
Two case studies are described to illustrate some of the complexities surrounding self-determined refusal of life sustaining treatment. These provide a backdrop against which the traditional formulation of autonomous choice can be evaluated.Footnote 24
1. Alpha
Alpha was 58 years old when she developed signs that indicated the onset of Alzheimer's disease. Over the next three years her symptoms progressed slowly and insidiously. She indicated on several occasions to her husband and other family members that if ever she reached a stage where she needed repeated hospitalisation for treatment of complications (such as chest or urinary tract infections) at a time when she might no longer able to decide for herself, she would prefer not to receive treatment and allow nature to take its course. She was particularly insistent that no active medical intervention should be given to her if she became doubly incontinent in addition to lacking capacity. She understood the implications of her decisions since she was a medical practitioner herself. However, she also asked her husband to do what he thought she would have wanted for herself, since he knew her best of all.
Over the next few years Alpha was admitted to hospital repeatedly for antibiotic therapy to treat chest infections as well as to receive intravenous fluids for rehydration. During this time her disease progressed relatively rapidly with fewer and less frequent periods of (apparent) lucidity until she lacked capacity entirely. She also became doubly incontinent. During one acute exacerbation she was admitted to hospital. Her verbally expressed previous wishes (this case predates the Mental Capacity Act 2005) were well-known to her husband, family and friends, and the medical team agreed that in the circumstances further active treatment should not be commenced.
Alpha's son (who had emigrated to the United States) and daughter (who lived in Australia) returned to England to visit their mother and other family members. Both son and daughter insisted that their mother ought to receive active treatment and a family conference was arranged.Footnote 25 From information gathered it is believed that the principal reason behind the treatment request, in full knowledge that this was contrary to their mother's previous wishes, was because they felt that it was only “fair” that their mother received every opportunity to benefit from treatment. Their father agreed that on balance his wife ought to receive treatment (there was no issue of impaired capacity in the father, nor was there any evidence of duress or coercion). Treatment was provided and Alpha survived. After two further episodes of hospital admission with active treatment and intervention, Alpha eventually died at home in the presence of her husband.
2. Beta
Beta, a practising solicitor, developed a progressive degenerative neuromuscular disorder. The prognosis was poor and his life expectancy (at best) was just a few years from diagnosis. The disease was such that whilst it did not affect his decision-making capacity he would inevitably develop neuromuscular paralysis which would progress to bulbar paralysis and total respiratory depression. In these circumstances treatment would involve assisted ventilation and even if he did survive his life-span would be reduced significantly. It was almost inevitable that he would suffer repeated and worsening episodes of respiratory collapse until death intervened.
His wife was appointed as his attorney under a healthcare and welfare lasting power of attorney. He indicated clearly and repeatedly that should he require assisted ventilation, at a time that he lacked capacity to decide, he would not wish to receive treatment because of his prognosis. This was his informed and considered decision even though he realised that, with treatment, he might survive a critical episode.
As anticipated, Beta went into neuromuscular decompensation and was admitted to hospital with imminent respiratory failure. His previous wishes were communicated to the medical team by his wife acting as his attorney. During Beta's stay his wife received repeated requests from Beta's parents and other family members to agree to life sustaining treatment. Further requests came from senior and respected members of Beta's community, as well as religious leaders. It was considered that if Beta was to survive, even if only for a short time, this would bring considerable emotional benefits to his children and family from the knowledge that he was “still there”. Active medical intervention was subsequently provided and Beta survived.
After being informed about what had transpired he re-considered his position. With full capacity he revoked the lasting power of attorney and his wish to refuse life-sustaining treatment should he experience a further critical episode. About three months later Beta became seriously ill and was ventilated. Following the development of multi-organ failure he died after a prolonged and turbulent clinical course.
III. COLLABORATIVE DETERMINATION
A. Family Involvement
At the end of her life Alpha was an (older) incompetent adult. Irrespective of whether her previous wishes amounted to a valid advance refusal of care the strong involvement of her children in the decision-making process was apparent at the time she became seriously ill. This was endorsed by her husband who had been told to do “what she would have wanted for herself” although she was equally emphatic about not wanting treatment in specific circumstances. The views of those interested in the welfare of incompetent persons will factor into the determination of best interests,Footnote 26 although their views are not the only consideration and the weight attached to determinative factors will be circumstance specific.Footnote 27 Close family members can be expected to have some insight about the incompetent patient's conception of the “good” as well as their previous values and preferences, although the intervention advocated by the family would need to fall within the range of clinically indicated options.Footnote 28 There is an argument that the family's collective and considered decision should not necessarily be interfered with even if this fails to maximise the incompetent person's best interests, as objectively assessed. A balance must be struck between the potential for harm weighed against the possible benefit.Footnote 29
The moral responsibility that families often assume over their elderly incapacitated relatives will tend to sway the outcome of healthcare deliberations and the decisions that health professionals take. Even in the absence of advance care planning there is no legal, or even necessarily moral, obligation on family members to provide or to be involved in the care of their relatives. It is certainly apparent that the obligation of adult issue towards their older parents is a poor foil compared to the duties owed by those same parents to their dependent children of decades before. Although children, who are now adults, may well have benefited from their parents' benevolence this cannot oblige recompense for their earlier dependency.Footnote 30 This is not meant to imply that there should be no obligation to care for elderly parents. Whilst intergenerational care and concern might be borne out of fairness, love and reciprocity the extent to which decisions can be allowed to impact upon a previously competent individual's prospective decision is problematic.Footnote 31 A family might well be expected to play an important and beneficent role in decision-making for an older person and more particularly if that person lacks capacity to decide about serious medical treatment.Footnote 32 In fact, the failure of health professionals to engage with the family at times such as these could lead to breakdown of trust and alienation,Footnote 33 and more especially in cultural groups where senior family members are expected to make decisions on behalf of their sick relatives.Footnote 34 The inclusion of sons and daughters in medical decision-making for elderly parents is not uncommon in some cultures and the moral basis for this rests upon the concepts of filial piety and “family autonomy”.Footnote 35
Confucian bioethics embeds principles of filial piety which emerge as strong cultural values and a primary social duty.Footnote 36 Thus, the involvement of adult issue in decision-making about parents (particularly for medical decisions) could be perceived to be a duty. Although in English jurisdiction adult progeny do not have authority to make decisions on behalf of their parents who lack capacityFootnote 37 decision makers have a duty to take into account, if practicable and appropriate, the views of anyone interested in the person's welfare.Footnote 38 The ethical basis of this duty is grounded on beneficence and involving others in decision-making may extend, at times, even to patients with capacity particularly for serious treatment decisions.Footnote 39 This tendency to protect and oversee, from a Western perspective, can appear intrusive and redolent of paternalistic beneficence of a bygone age.
If family autonomy is considered to be an incommensurable principle it follows that self-determined choice will reflect the decision-making of the family as an entity, rather than an emanation of any individual in isolation. In this regard, a competent patient may consider benefits to members of the family and conversely family members might expect their reciprocal interests to be taken into account, particularly where the decision will impact upon the group.
Benefit for the family unit, as an entity, may at times be achieved at some cost to the individual. Beta might have decided to ascribe benefits to the family as a higher priority by withdrawing his refusal of treatment. He did so with full capacity and satisfied in the knowledge that his revised decision would bring emotional benefit to his family. It could be argued that in doing so he bore the burden of a more protracted period of clinical interference at the very end of his life. Alpha's situation is more complex. We know that she lived for a few months after her treatment episode. Her condition remained frail, she was fully conscious although not competent. Arguably, it is less open to doubt that Alpha did have to bear a burden during her final months. Her lack of capacity makes it a considerable challenge to weigh this burden against the ostensible psychological benefits to the family (and particularly her children) in knowing that “all that possibly could have been done for her had been done.” Yet, she had (whilst competent) told her husband to do what he thought she would have wanted for herself, since he knew her best of all. If we accept her husband's decision for her as some form of substituted judgement then he acted knowing that she would be content with receiving treatment thereby prolonging her life with its attendant disadvantages.Footnote 40
In the context of end of life decision-making a collaborative model for the decision-making process has been proposed with emphasis being given to individual wishes and interests, as well as to those of the family unit.Footnote 41 The difficulty with models of shared decision-making is the potential lack of a clear locus of decisional authority which could arguably militate against autonomous choice. Nevertheless, inclusion of family perspectives might help prevent moral abdication of family members and serve to enhance social and moral relationships with the person who is close to death.
The potentially beneficial influence of family involvement in the decision-making of competent persons has received little attention and empirical evidence is relatively sparse. Most of the literature focuses on the involvement of the patient's spouse or partner.Footnote 42 In a survey on medical decision-making by patients in the family context almost ninety percent of patients and their relatives agreed that decisions ought to be made jointly by the patient, the family and the clinician. Other studies similarly reveal the perceived relevance of familial opinion in medical decision-making, a finding borne out by empiricism.Footnote 43
A recent study using in-depth interviews of patients with long-term illnesses, and their relatives, was carried out in six NHS Trusts in England to evaluate family involvement in clinical decision-making.Footnote 44 Relatives participated actively in discussions with clinicians and were involved at several stages of the decision-making process. Patients made efforts to share information with relatives and this interaction had a demonstrable positive influence on the decision itself and particularly so for major clinical events.
The findings above reflect a relational approach to shared decision-making based on all parties having relevant and adequate information. Relatives offered informational, psychological and emotional support. Although all patients had the final say in their decisions these were nevertheless influenced by their relatives' views and input. It is of particular note that following his recovery Beta (above) altered his decision out of recognition of the strong views of his family.
B. Interests of Others
Broad acceptance of Kantian autonomy as the sole, or pre-eminent, paradigm for self-determination at end of life is precarious and insufficiently sensitive to the nuanced factors that inevitably coalesce in personal decision-making. From the considerations of Alpha and Beta it appears that self-determined choice at end of life can necessitate the balancing of values of fundamental significance: respect for self-determined choice as well as protection and promotion of the wellbeing of the person within the family and society.Footnote 45 While it may appear paradoxical to consider the interests of others, even if there are ties of love and affection, it is apparent that the interests of others may impact upon a person's wellbeing, or at least peace of mind.Footnote 46 In making a self-determined choice an individual may wish to evaluate the outcome that can be expected to materialise consequent to that person's choice, alongside other factors likely to engage in any given circumstance. These might include the individual's interests, as measured against the good of others and the interrelationship of the individual's wellbeing with other personal interests.Footnote 47
A competent person making a decision through self-determination may apply principles that are similar to the legal principles that a court will apply when making a decision of best interests (for a person who lacks capacity). Whereas “best interests” is decided on an external objective evaluation a person with capacity will decide her own interests from an internal subjective position. Several cases (regarding best interests) have considered the extent to which the interests of others may form part of decision-making.Footnote 48 Although Munby LJ pronounced that “the rights and responsibilities of partners and other carers have in the final analysis to give way to the best interests of a vulnerable adult,”Footnote 49 other decisions indicate that the interests of others can be relevant factors. The centrality of human relationships in best interests assessments was recognised by Hedley J. who considered that the determining factors were wider than health and physical care needs and engaged “the emotional dimension, the importance of relationships, the importance of a sense of belonging in the place in which you [live], and the sense of belonging to a specific group in respect of which you are a particularly important person.”Footnote 50 By analogy, a competent person's strong altruistic regard for inter-relationships and the good of others could inform a self-determined decision that may appear counter to self-determination based upon the paradigm of autonomy.Footnote 51
The attitudes of others and their interest in the welfare of the person cannot be ignored in the decision-making process. In similar vein, this is reflected in the welfare principle that pertains to children and their upbringing.Footnote 52 Whilst the child's welfare is the ultimate consideration, interests of others nevertheless are relevant and may bear upon that consideration. Arguably one of the most compelling reasons for including the attitudes of those who are close in the decision-making calculus is because of the tendency for enduring relationships within families, and closely knit social groups that are characterised by shared and possibly distinctive values. In fact, this fundamental notion may extend even wider to include the interests of progeny, parents and significant others in the making of crucial decisions about what is perceived to be in the welfare best interests of an individual. A patient-centred perspective of self-determined choice may not in itself resolve the issue of decisional authority and there is a need to consider the precise nature of purported interests. This may be linked to transmitting commonly held values at end of life, as well as fostering values of intimacy and cohesion at the deathbed.
Parents are not expected to always set their children's interests above their own, or those of other family members, when making decisions that affect the child: a situation that contrasts directly with court's duty to make the child's welfare the paramount consideration in decision-making.Footnote 53 The courts consider the child as an isolated individual, as opposed to a member of a family, or even the wider society. Herring suggests that although the courts have found ways of protecting parental interests (despite the welfare principle) and a more inclusive consideration that aligns more readily with family dynamics is called for.Footnote 54 This was recognised by Ward LJ in that “[Welfare] is one of the relevant facts, choices and other circumstances which a reasonable person would take into account. We do not live in a vacuum and our choices have to be made for ourselves as well as our children in the realisation that we sometimes have to sacrifice self for the greater good of social order.”Footnote 55
Modern interpretations of autonomy focus on formulations of either “relational” or “rational” autonomy. Relational autonomy acknowledges individuals as agents but who are, nevertheless, reliant on others to support their autonomous decision-making. It is based upon a dynamic reciprocity between the individual and those others who are closely involved with that person's life.Footnote 56 End of life decisions tend to be made in social contexts and some will consider that individuals have at least an ethical duty to respect and to take into account the interests of close relatives and significant others. In the context of life prolonging treatment, it has been argued that if this has a detrimental effect on relatives' lives, then dying patients have a moral responsibility to refuse such treatment so as not to be a burden.Footnote 57 The opposite of this radical view is that the dying individual has a duty to strive to stay alive for as long as possible because death and the loss of a loved one (even though inevitable) might (at that particular time) impose a greater burden on the family than at some time in the future. The moral justification for this stance may lie in understanding that family relationships impose reciprocal responsibilities and just as a relative may be expected to support a dying family member, that person has concomitant duties to choose that option which is most acceptable to those same relatives.Footnote 58 Whilst a view such as this calls for a radical reconfiguration of thinking, it does not contend that a patient's preference should be overridden or subjected to duress or coercion by relatives' interests.Footnote 59
From a relational perspective it is important to ascertain whether persons intend that their relatives will be involved in decision-making and if so, to what degree. The exercise of autonomy does not necessarily preclude attention to the interests of others. The total indifference of relatives and significant others would seem to be implausible in the context of shared experiences and values and medical decisions may well be subject to the influence of others.Footnote 60 Any suggestion to the contrary is to deny the fabric of human interaction which, for most, is a fundamental aspect of life and its processes. Relational autonomy, however, does not deny the importance of personal freedom and aims to provide individuals with the ability to make healthcare decisions, underpinned by autonomous choice.
Rational autonomy focuses on the ethical importance of not simply choosing, or making a choice, purely because of an independent ability to do so but choosing specifically in a rational way.Footnote 61 Proponents of rational autonomy base their paradigm on the Millian notion that repudiates mere independence of choice in favour of reflective choosing, thereby ascribing moral value to the choice that is made. Reflective choosing is developed and modified by that individual's culture, nature and character, thereby adding value for oneself as well as for others.Footnote 62
Reflective choosing underscores the thesis of the internal conditions that govern the making of choice.Footnote 63 Desire is a natural starting point for considerations such as these. Is an agent autonomous in acting in a manner that fulfils her desire? One approach to answering this question is that in doing what she desires, the action of the agent represents an action of free will provided that there is a second-order desire, a conative state that endorses her first-order desire. A first-order desire is a primary desire. This want or need or wish is one which is fulfilled at that particular moment in time. However, it is at that same time linked to a second-order desire which is the desire to fulfil the first, and which acts as the impelling influence that governs the former. The moral significance ascribed to choosing a first-order desire endorsed by a second-order desire is greater than choosing purely on the basis of first-order desires. This is because the latter (second-order desire) represents the motivational drive for that initial desire.
The proposal for hierarchical states of volition has not been without challenge.Footnote 64 It has also been argued that rational autonomous choosing may not always lead to an ethically superior choice.Footnote 65 However, acting autonomously, or of one's own free will, must involve a higher order volitionFootnote 66 if moral status (from a normative perspective) is to be ascribed to such an act. Consider the case of Beta. Following his critical episode he reconsidered his position with regard to life-sustaining treatment and withdrew his previous refusal. For all intents and purposes this decision was an act of self-determined choice. Yet, if his previous self-determined refusal was autonomous, then how can his current decision also be self-determination made through the same erstwhile construct of autonomous determination? One approach might lie in contemplating self-determination against the fabric of motivation. Beta's motivation might have been the expected beneficial effects of his continued (albeit short) survival on the thoughts and feelings of others. The motivational construct behind self determined choice represents freedom for that individual.
IV. HOLISTIC DETERMINATION FOR ONESELF: A NEW PARADIGM
A. Should self-Determination Always Equate with Kantian Autonomy?
Self-determination incorporates self-regulation which in itself is founded upon autonomy. Kantian autonomy is a property of the will by which it is a law to itself.Footnote 67 Its total independence from any other property or objects of volition forms the basis of the dignity of human nature for which an individual (agent) is owed a distinctive respect as a rational being. For Kant the concept of a rational being is such that it must regard itself as giving universal law through all maxims of its will. Judging oneself and one's actions from such a standpoint leads to the (very) fruitful concept of a realm of ends,Footnote 68 which in turn results in a common solidarity of all rational beings.Footnote 69 Kant further asserts that whilst autonomy is the basis of rational nature, morality is the condition alone under which a rational being can be an end in itself.Footnote 70 The mutuality between morality and autonomy may be synoptically rendered by stating that only in acting morally is one a rational and fully free human being.Footnote 71
Transposing this into context at end of life, does this mean that self-determination is “moral” only if it is free from any extraneous volition including a regard for the thoughts or hopes of near and loved ones? A construction such as this kindles an uneasy sense of counter-intuition. As agents who live and act in a common moral world we have the ability to construct moral ideals that can be shared because of reason, and which are reinforced a fortiori through self-determination.Footnote 72 Whilst autonomy demands respect, the way in which an agent may exercise self-governance merits regard even though it may seem at odds with the orthodox formulation of autonomy.Footnote 73 Difficult questions remain as to whether standing, in the moral order, can be diminished on account of how self-determination can best be achieved by an individual.
To a large extent self-determination is a matter of how an agent exercises her capacity for voluntary activity. The character of self-determination may change as a person matures and develops in rational capacity. A mature individual possesses a critical dimension which is to have her own character and one becomes who one is on account of a range of experiential factors including the way in which self-determination has been exercised previously. A person raised in a certain way, and in a certain tradition, to the exclusion of seeing or doing things any differently (and who might not even think of acting in any other way) might still exercise autonomy and self-governance in leading her life, because to do so is an expression of her own innate character.Footnote 74 Autonomy in relation to a particular act, or a particular person, is therefore, at least to some degree, dependent and conditional upon embedded behavioural characteristics.
From a perspective of teleological behaviour there is no single stimulus in the environment that can reliably cause a particular pattern of behaviour to be exhibited by an individual. Teleological behaviourism holds that there is a range of extrinsic social reinforcements in addition to the intrinsic value of an activity that underlies behaviour patterns.Footnote 75 Viewed in this way, autonomy is not an intrinsic property of an individual act, nor is it generated from a feeling within the person, but it becomes instead a matter of perception for both the person and the observer.
Once society has differentiated between vicious and non-vicious acts it is questionable as to why acts that are non-vicious (and which may in turn be highly valued by the actor) should not be ascribed moral status, irrespective of whether they are volitional, cognitive or spiritual, a state that is unobservable or even unknown to others. It would be a mistake to attribute morality only to the Kantian ideal of autonomy since self-determined choice exercised through the medium of other theoretical principles may be underpinned equally by virtuousness. Normative frameworks that require respect for paradigms that underpin self-determination are likely to remain merely notional unless the way in which self-determination is exercised is able to actualise and sustain that framework. The challenge that remains is why should there be any diminution of moral respect on account of the way in which one exercises self-determination or why self-determination should be grounded only upon the concept of Kantian autonomy.
The exercise of autonomy has been ascribed value through intelligent or reflective choosing as developed and modified by that individual's culture and society.Footnote 76 In a classic analysis a distinction has been drawn between routine choosing and that form of choice which reflects second order desires.Footnote 77 The added value of autonomous choice lies in choosing not merely first order desires (those which focus on immediate gratification) but making a choice that reflects one's second order desires (those which are ascribed with moral significance).Footnote 78 The capacity for choosing which reflects second order desires is offered as being morally significant. It has been suggested that this approach may be flawed because of failure to demonstrate that such choices can be perceived as having value.Footnote 79 However, a fundamental question in this regard is whether there might be some disposition, other than desire, that leads individuals to choose what they are convinced they ought to do. One approach to this is to distinguish between “preference” and “desire”.Footnote 80 In this conceptualisation there is a need to distinguish not only between a first order desire and one of a higher second order, but also between the latter and an even higher order preference. Preference differs from desire. Preference is regarded as a disposition to choose, given the opportunity that incorporates higher evaluation and discretion.
A first or second order desire is a function of mental capacity whereas a preference is a “metamental” filter to achieve a higher evaluation. Autonomy depends upon the exercise of one's capacity for such evaluation and cannot be de-linked from cognitive life. The evaluation of desire is supported and explained by the heuristic of plasticity resulting from elevated mental exercise.Footnote 81 When considered in this context, cognitive plasticity reflects reciprocity between intrinsic factors such as experience, inter-relationships or inter-connectedness with the environment and others, as well as extrinsic factors such as social, political and cultural systems. On this analysis an autonomous choice is one that follows a metamental ascent of preferences to that of an “ultra” preference. An ultra preference is more than simply a preference over preferences, or a counterfactual influence of one preference over another, but is in effect a power preference over the preference structure.
Stated differently, self-determination is not merely choosing between options, or satisfying desires, or exercising a hermetically sealed standalone internal property of the will. It is determination for oneself through a choice over the direction of choosing. The autonomous choice will be that preference (the ultra preference) that the individual prefers to have.Footnote 82 In a situation at end of life this ultra preference may depend upon some state of the individual that may not be discernible to others. This could be secular, faith-based, cognitive, experiential or any permutation of these. What matters is that the ultra preference, which is ascertained through an ascent of preferences, represents freedom of choice and is therefore autonomous.
B. Heteronomy Contra Autonomy
Non-conformity with the Kantian formulation of autonomy is termed heteronomy. According to Kant, heteronomy results from any action of the will, other than total independence and unaffected by external influences, whatsoever.Footnote 83 Kant accepts however, that agents with the power to choose may do so either autonomously, or heteronomously. Footnote 84 The key distinction is that heteronomous principles acquire justification from elsewhere, whereas autonomous principles take justification from nowhere else. On this basis a heteronomously derived principle is morally unacceptable: it cannot form the basis of a universal law because it may have application only for some, and not for every agent, universally. Kant holds that heteronomous reasoning invokes personal external assumptions and is ultimately defective because of a reliance on individual or private reasons, thereby diminishing or even negating its value of universalisability as a “law”. This does not mean, however, that heteronomous principles inevitably result in malign choices. Heteronomous choices may be morally acceptable. As a heteronomous choice has to rely on an external authority (whatever that might be) the problem that arises is that by chance some choices may be morally conformist whilst others are not.Footnote 85
The idea of a determination based on the expectation this can be achieved solely and wholly free of taint from any sentient influence imparts a sense of surrealism.Footnote 86 The concept of Kantian autonomy as self-sufficient self-legislature was rejected by Levinas on the basis that such a notion violates what he terms “alterity”. Alterity is the schema by which the rational subject seeks to develop an understanding of the world by bringing diverse events and people within the framework of her own terms.Footnote 87 Levinas argues that it is only through such sensibility that an individual can gain knowledge. Kant's version of autonomy that derives entirely and wholly from within the self stifles the richness of heterogeneity to a common single denominator thereby contravening alterity.Footnote 88
Viewed through a lens such as this the architecture of alterity is a state of self-knowledge that is approached (and elected to) through experiential terms. The self is indebted to “the other”, the non-self, and is “ruled” in a reciprocal relationship. This concept can perhaps best be understood in terms of meaning that whenever one is engaged with another person or persons, such relationships are significant ultimately because of the obligation that falls upon one to respond to the other's needs and existence. While one may not be conscious of such capacity, the need to respond (responsibility and responsivity) is always an aspect of relationships with one another and irrespective of whether this is consciously recognised.Footnote 89
Kant rejects experiential reasoning as a principle for self-determination on the grounds that this equates with following one's own desires, emotions and (most likely) self-interest and therefore is spurious to morality. Yet heteronomously derived reasoning aligns with and promotes values such as diversity and inclusivity, both creeds being fundamental to the ethical basis for self-determination. The grounding of ethics within a common rationality is undoubtedly necessary, but inflexibility raises the issue of what becomes of one's obligations to others. If these obligations are denied then de facto the rationality of others equally is also denied. Such a notion is not merely unpalatable but is also alarming since one only has to believe that some people are not really the same and a “door is opened for a holocaust”.Footnote 90 Freedom through self-determination is a laudable primary goal of autonomy. Yet everything contra-autonomy cannot be viewed typically as an imposition on freedom. Within a framework of heteronomy freedom is equally possible through external sensibilities that permit one to make a responsible choice, and one that a subject is morally free to exercise through her will.Footnote 91
MacCormick suggests that the very character of law is (relatively) heteronomous.Footnote 92 There is a need for universally held rules, decisions and determinations (which is what the law does) whilst engaging self-governing assent. Law is fundamentally a rule-based doctrine that authoritatively determines essentially practical questions. As a result, an inevitable feature of legal determinations is that they are ultimately coercive in nature and an individual's will is subjected to forceful (but never quite overwhelming) pressure to conform with societal norm based (heteronomous) judgements rather than those that are private or self-engendered (autonomous). One individual's freely chosen acknowledgement of authority may represent another's unwilling bondage. An individual's attitude towards rules and rule – based paradigms can assume at least three forms: whether the content of the rule is endorsed; whether the rule being determined by an authority constitutes a reason for accepting it as binding (quite apart from its content); and whether one assents to sanctions in the event of breach of the rule, even if the breach is by one's self. Thus, one may assent to the authority of a rule, or paradigm, without assenting to its content. Alternatively, one may at least assent to accede to the imposition of sanctions if the rule is breached, even of laws to which one does not assent; or one might accept and assent to the authority of the rule but nonetheless reasonably justify alternative underlying paradigms for that rule. From this perspective it comes as little surprise that autonomy is not necessarily the only paradigm for self-determination at end of life.
C. An Integrated Concept
Let us return to what we have termed the “Alpha-Beta conundrum.” Alpha had been adamant that if she required repeated admission for serious infections she would prefer not to receive treatment. She was particularly insistent that active medical intervention should be withdrawn if she became incontinent. Given that her situation predated the Mental Capacity Act 2005 evidence of her instructions, if valid and applicable, might have amounted to an advance directive although the matter was complicated in that she had informed her husband that he was best placed to decide for her given that he knew her thoughts and wishes.Footnote 93 We have no definitive evidence as to what Alpha may have thought of the later change (although her husband later commented that she would have undoubtedly approved). In Beta's case, we know that following his initial short period of recovery, and whilst competent, he withdrew his lasting power of attorney and refusal of treatment suggesting at least some re-alignment of his thoughts in respect of overriding his earlier refusal. The two scenarios illustrate a complex interplay of factors underlying autonomous self-determination. On a prima facie analysis an immediate response might be that in both situations there was an unlawful abrogation (by “undutiful” surrogates) of all accepted decision making principles although this would seem to be a harsh interpretation. When viewed through the prism of life in real-time, experiences such as these call for a revision of thinking in this area.
Purist ideology adopts a binary approach inasmuch as autonomy (from a Kantian perspective) either prevails, or does not. Contemporary versions (of relational or rational autonomy) are constructed upon the model of a uni-axial continuum of self-determination that extends from a total self-centred independence to one of complete dependence on external factors. None of these is satisfactory as a paradigm that sufficiently captures the intricacies of nuanced person-specific decision making. Inter-relationships and time-dependency of decision making that is driven by interactive cognitive and emotional processes at end-of -life calls for a paradigm that is multi-axial, multidimensional, and which may invoke alternative principles.
The paradigm of autonomous self-determination presents at least three potentially problematic issues as it stands. First, the emphasis on self-determination centres on the term “self”, which implies that such a determination is made almost exclusively by oneself by way of introspection. This seems unrealistic. Individuals do not usually live their lives in splendid isolation and the norm is to gather experiential feelings and thoughts which, whilst being external to that individual, are nonetheless internalised and will impact therefore upon any decisions made by that individual. Second, determination at end of life seems to suggest that determination occurs as a single event at a particular moment in time, rather than the more likely cognitive process of development that culminates in a collage of a range of ancillary decisions. Third, the term “autonomous” places autonomy as the sole and principle paradigm in the decision making process.
Our proposed conceptual model for decision-making is the paradigm of “holistic determination for oneself”. Holistic determination for oneself is based upon a synthesis of a series of decisions at discrete points in time.Footnote 94 Each decision forms a sub-determination and is a composite of ancillary decisions based upon temporo-spatial experiential interactions that will be unique to each individual decision-maker. The final integration of sub-determinations will form the determination. Each sub-determination involves a choice relevant to each particular individual, and for the final outcome or determination.
This can be understood as follows. Consider a person at the end of life who must choose whether or not to refuse treatment and we agree that the decision is more likely to have been made over a period of, rather than at a single point in, time. The starting point in time is t 1 and the end point, being the time that the decision is declared, is t z. During t 1 to t z a number of sub-determinations may contribute to the final determination. These sub-determinations might be Sa, S b, S c…., S n with each of these dependent upon a range of ancillary factors. Thus, in making sub-determination S a, for example, factors such as f a1, f a2, f a3,….., f am [j=1,2,3,…m] will engage to form ancillary decisions which feed into sub-determination Sa. Likewise, other factors will drive sub-determinations S b, S c, …, S n. The integration of all the sub-determinations will form the final outcome of “determination for oneself”.Footnote 95
The ancillary decisions that feed into each sub-determination will depend upon prevailing experiential and relational influences thereby contravening purist notions of autonomy. In Kantian language this represents heteronomy. However, it would be wrong to regard all heteronomous choosing as coercion, duress, “non-choice” or failure to exercise free will. Heteronomous choice can be free choice but differs from its counterpart, namely Kantian autonomous choice, since the latter is made irrespective of the object. A heteronomous choice in respect of an ancillary decision in the process of determination will be made relative to the object. At time t, each sub determination process could be an aggregation of the subjective importance of each factor {Si}t, [i=a,b,c,…n].
The outcome at the end of the decision making process will be an expression of preference regarding a binary choice which is either “Yes, I want X” or “No, I do not want X”.Footnote 96 This is a synthesis of thought processes that encompasses each of the ancillary decisions and sub-determinations at discrete points in time. It is autonomous in that “I freely choose this outcome. This is my (self determined) choice”. The discrete points or issues in the determination will be integrations of sub-determinations which in the context of end of life decisions may be focused between t 1…. t z but in reality will consist of a multiplicity of factors that have evolved and developed over time and which interplay at each of the points of sub-determinations a, b, c ….z-1 within the timeframe of end of life determination. The integration of all the sub-determinations at t z forms the final holistic determination for oneself which can be expressed as:Σi{Si}t=ΣiΣj{w ij}t where w is the subjective weight that is freely (and autonomously) assigned to each individual factor.
The paradigm of holistic determination for oneself accommodates stimuli that are internalised and processed into the final determination. These stimuli sensed by the antennae of life may be experiential or relational and are time-evolving, rather than fixed in time. The interaction of these stimuli cannot be ignored and to say that these are not relevant is mere pretence. At the levels of ancillary decision making and sub-determinations heteronomous reasoning may be deployed, and the outcome or “determination for oneself” which integrates the sub-determinations will have been freely and voluntarily chosen.
Purists may baulk at the idea of “hetero-autonomous” decision making as part of determination for oneself principally on the grounds that from a Kantian perspective heteronomy is imputed with lower moral standing. Decision making by oneself has two components: self-creation and self-engenderment. Self-creation is about reaching that decision from the start until the point that it is engendered. “Autonomous self-determination” implies that a decision is self-created entirely. It would seem to be virtually impossible for a decision of a sentient, or previously sentient, person to be entirely self-created and unaffected by the experiences or stimuli of life. Arguably this is a paradox, or even a non sequitur as the sole reference point would be the “isolated” individual, a concept that does not align readily with reality.Footnote 97 The reduction of individuals to isolated atomistic existence would, in itself, undermine the concept of autonomy since autonomy must co-exist with influences and obligations arising from contiguous relationships.Footnote 98
Decision-making is dependent upon multi-attribute strategies. The “most important dimension” hypothesis suggests that people make decisions that are superior premised on the most important dimension.Footnote 99 In making a judgement the value placed upon an attribute that is self-created (as to be expected in forming a purely self-willed decision) or one that is not, is critical in forming a self-engendered decision.Footnote 100 A schema for decision making for oneself that is dissociated from relational affects of life is illusory in the modern world of experiential sharing through globalisation and electronic communication. Within a collective context, the term “self-determination” is wholly unsatisfactory.Footnote 101 “Determination for oneself”, on the other hand, encompasses a wider ambit and acceptance of experiential factors that might contribute to decisions made by oneself and for oneself. Self-engenderment is about making a decision (for oneself) and communicating that decision. While this can be articulated or expressed at a specific moment in time a decision will be the accretion of a synthesis of human thought that evolves over time and is characterised by parts of a mosaic that coalesce to form the final picture.
A paradigm for determination for oneself based on autonomy and heteronomy might be viewed by critics as corruption of Kantian theory. The purpose of any paradigm is to create a basis for a generalisation that is universally acceptable and has moral significance. Holistic determination (like self-determination based on Kantian autonomy) offers individuals freedom to decide for themselves at end of life by an approach that incorporates the mutuality of individual relationships, as well as the evolving nature and effect of such relationships and experiences over time. As a concept it is both multi-axial and multidimensional and may draw on empiricism. A determination that is freely made can be achieved through the exercise of Kantian autonomy, but it is not necessary that autonomy thus understood is the sole pathway to achieving that freedom. The extent to which one is free to make a determination for oneself is not an absolute that is given a priori, but is a matter of degree that may be derived empirically.
D. Translating Theory into Practice: an Illustrative Example
We now demonstrate how the concept of holistic determination may be applied practically to self-regulated decision-making. In so doing we expand upon the mathematical expression of the paradigm and illustrate how this might have applied to Beta's decision for acceptance of life-saving intervention following his recovery from the critical xepisode that he had suffered.
During the time t 1 to t z, from Beta's recovery to the time he makes his own self-regulated decision, a number of sub-determinations may have contributed to his final decision. The determination Dt for Beta at a point in time t, would be driven by a set of n sub-determinations: {Si}t; [i=a, b, c, …., n].
For example, at t 1, the first time point, the set of sub-determinations are: {Si}1=Sa1, Sb1, Sc1, ….. Sn1. Each of these will be driven by a set of m (experiential and relational) factors: {f ij}t; [j=1,2,3,…m]. So, at point in time t 1, sub-determination Sa1 might depend upon the ancillary factors f a11, f a21, f a31, ….., f am1. For Beta, Sa1 might be consideration of the effect of his death on his child if this occurred in the very near future compared with a few months, or even a year, later. This consideration might, in turn, depend upon other ancillary factors such as the child's stage of schooling, an imminent birthday and so on. Associated with each ancillary factor is the subjective weight (or an implicit subjective correlation with the sub-determination) assigned by the individual to reflect the importance of that particular factor in the formation of the sub-determination in question. So, w 1a1, w 1a2, w 1a3, ….., w 1am are the corresponding subjective weights at time t 1 associated with factors f a11, f a21, f a31, ….., f am1.
A further sub-determination for Beta at this time, Sb1, might include consideration of the possible impact of his refusal of treatment (and not just his death) on his wife. Similarly, this might depend upon ancillary factors f b11, f b21, f b31, ….., f bm1 and so forth, such as her current employment circumstances and the emotional impact caused by the responsibility of acting as his attorney. For sub-determination Sb1, w 1b1, w 1b2, w 1b3, …, w 1bm are the respective weights associated with the ancillary factors f b11, f b21, f b31, …, f bm1 and so on.
At every time t, each sub determination process could be an aggregation of the subjective importance of each factor {w ij}t to give: {Si}t=Σj{w ij}t. The value of {Si}t could be positive, negative or zero, indicating a “benefit”, “burden” or “neutral” expression respectively. The absolute magnitude represents the degree of the “benefit” or “burden” of that particular choice. So, at t 1 sub-determination Sb1=w 1b1+w 1b2+w 1b3+…..+w 1bm, might be positive, negative or neutral.
Let the numerical value of each {w ij}t be such that – 1 ⩽{w ij}t ⩽1. In other words, a weight of −1 implies that the associated factor impacts the sub-determination in a highly adverse way whereas a factor with a subjective weight of +1 has a significantly positive impact on the formation of the associated sub-determination.
Suppose that at the end of time period 1, t 1, there are just two sub-determinations that integrate to contribute to the decision regarding Beta's final determination about life-saving treatment (or its refusal). These are (as above) Sa1 (issues in Beta's mind in relation to his child) and Sb1 (issues in Beta's mind in relation to his wife). For simplicity of exposition, assume that each sub-determination is driven by only two factors. Then, Sa1=w 1a1+w 1a2 and Sb1=w 1b1+w 1b2.
Beta assigns a subjective weight to each factor based on his election of the relative importance of each, in the totality of circumstances as he sees it. Suppose the subjective weights assigned to each factor have the following values: w 1a1=1 (child's imminent birthday), w 1a2=−1 (child's level of schooling), w 1b1=0 (wife's current employment circumstances) and w 1b2=0.2 (emotional impact on wife from acting as attorney). Therefore, Sa1=1−1=0 and Sb1=0+0.2=0.2. Then, the final outcome is given by: Dt=Max {Σi{Si}t, 0}=Max {(Sa1+Sb1), 0}=Max {0.2, 0}=0.2. How might one interpret this value? What this means is, that in the aggregate after considering all sub-determinations and ancillary processes, the determination outcome at t 1 is marginally in favour (about 20%) of accepting life-sustaining treatment. The pros and cons of deciding to accept the treatment as expressed through the ancillary processes have a “neutralizing” impact in the formation of sub-determination Sa1 (since Sa1=0) and a marginally “positive” impact in the formation of sub-determination Sb1 (as Sb1=0.2). So, in this case, sub-determination Sb1 “is the more important dimension”.Footnote 102
At each time point there may be (up to) n sub-determinations, each one dependent upon (up to) m ancillary factors. Between t 1 and t z there may be (up to) z -1 sub-determination time points. The integration of all the sub-determinations at t z forms the final holistic determination for oneself which can be expressed as:Σi{Si}t=Σ iΣj{w ij}t. The value associated withΣi{Si}t could be positive, negative or zero. A positive value would be Beta's acceptance of future life-saving treatment and withdrawal of his power of attorney.
The paradigm of holistic determination may have implications for health professionals caring for patients at the end of their lives. Doctors must be satisfied that competent patients' decisions to accept or refuse clinical interventions are voluntary and based upon sufficient information. Doctors will no doubt perceive that this duty is enhanced for vulnerable patients and where treatment refusal may be fatal. Even in situations such as Beta's, which involved acceptance of treatment (notwithstanding his prior refusal), there might be legitimate clinical concern that continuation of treatment could prolong the dying process and compromise the dignity and care of that individual.
Doctors must hold a reasonable belief that patients have capacity to make decisions whether to accept or refuse clinically indicated treatment. The inherent worth placed upon this principle is grounded on the paramount position of autonomous choice. There is no reason to believe that this would be altered if a patient's decision was made based upon the paradigm of holistic determination for oneself. The decision would still have been made for that patient and by that patient, but it would not be claimed to have been reached in a vacuum divorced from insights and consideration of factors of personal significance. This is because holistic determination, like autonomous determination, reflects self-regulation. It is the principle of self-regulation that empowers and secures dignity and value.Footnote 103
A potential problem that could conceivably arise would be where a later decision, based on holistic determination, runs counter to one made earlier based ostensibly on autonomous choice. Why this should present a problem is questionable since in any event one may choose autonomously to vary an earlier decision. Consider Beta's situation, for example. He initially chose to refuse life saving treatment, yet subsequently, he decided to accept such treatment. In the discussion above we have attempted to explain in practical terms how his later decision might be better understood using the framework of holistic determination. It would be counter intuitive to state that in Beta's case a later holistic determination would be in some way “tainted”, but a later autonomous determination would not, when both are expressions of self-regulation. Yet arguably such a paradox may emerge if a supposition of undue influence arises as prevailing upon a person such as Beta.
The reason for a possible conflict, as above, may be due to greater visibility of the diverse factors that enter into holistic decision-making. These include discernible engagement and reciprocity with others, as well as additional strands that are of significance in the sub determinations that form the final determination. A doctor might therefore have an enhanced duty to satisfy herself in respect of her patient's capacity, and also to obtain objective assurance of a voluntary, informed and non-coercive decision made by her patient. In practical terms operation of the paradigm might call usefully for deeper engagement between a doctor, the patient and other relevant parties through frank and open dialogue. This would accord readily with the principles of good medical practice.Footnote 104
E. Holistic Determination and Self-Regulation
At first glance the suggestion of a paradigm for self-engendered determination that incorporates heteronomous choosing might seem to run counter to traditional conceptions of the self-regulated agent. It is trite that autonomy is the property of the will by which it is a law unto itself, and independent of any property of the objects of volition.Footnote 105 A law is “not an object of the senses, and consequently does not belong among appearances” but can be apprehended and acted upon only by a transcendentally free will.Footnote 106 The implication is that transcendental freedom of the will is a necessary condition of autonomy even though such freedom, by itself, will not necessarily entail autonomy.Footnote 107
For Kant, free will “must find a determining ground in the [moral] law but independently of the matter of the law”.Footnote 108 What this means will depend upon what Kant might have meant by “determining ground.” GuyerFootnote 109 offers an exegesis of Kantian thought on two contrasting interpretations. If the free will must always have a determining ground (a formal principle) which alone suffices to establish autonomy, then transcendental freedom will always entail autonomy. In the alternative, if free will must have a determining ground in order to act “rationally” then an action of free will not be predicated necessarily on a link between transcendental freedom and autonomy.Footnote 110 To give an example at the furthest end of the spectrum, one may freely and autonomously choose not to be free. In follows therefore that transcendental freedom is not the only condition sufficient for the realisation of either autonomy or an action of the will exercised with liberty.
Kant also asserts that all rational beings should be treated as ends (in themselves) and never solely as a means to an end.Footnote 111 Therefore, a moral duty exists that requires the exercise of free will to be so guided to achieve this principle.Footnote 112 This implies a subjunctive equilibrium of mutuality between one actor and another. Guyer claims that autonomy cannot simply be the greater freedom of the will, but needs to be understood within the context of the aim that a person with free will must adopt, if such freedom is to be promoted in any ordinary sense.Footnote 113 Autonomy allows one to choose freely to subvert inclinations and is not identical solely with a noumenal act of freedom. Autonomy is a condition dependent upon an a priori principle but realised in the empirical world, which we can freely choose to realise and maintain, or to subvert or to destroy”,Footnote 114 thereby actualising self-regulation. This is conceived as a condition of mastery over inclinations in our choices and actions, as a condition of co-operation with others (but not dominated by them) and a condition by which we can maintain free choice for oneself.
Complete elimination of inclinations as the source of needs would be an extreme position and is labelled (in Kantian terms) as autarky (autarchia). Absolute autarky, as a goal for human conduct, leaves individuals in a vacuum with no means with which to express activity. It is counterintuitive to imagine that this might be a desirable state. Kant does not suggest striving towards autarky but that the ideal of self-regulation should be put into practice through autocracy, or self-mastery. This rule of autocracy seeks to maintain command over oneself so that one is capable of performing self-regarding activities.Footnote 115 Achieving autocracy as a realisation of autonomy in the actual circumstances of human existence in life can be complex and multi-faceted and represents a composite of cognition as well as experiential input. Cognitive powers include not only the concept of pure reason but other mental powers such as understanding, judgement, reciprocity, imagination and creativity. These cannot be isolated or divorced from temporally acquired, as well as instant and new experiences. In our view, it is this combination that provides the basis for “self government” during the end of life and is the very essence of decision-making.
Let us not lose sight of the predicaments of Alpha and Beta. Against this background, consider the paradigm of holistic determination for oneself at end of life. Deploying the term “determination for oneself” rather than “self-determination” marks a shift away from the concept of transcendental freedom (Kantian autarky) to one of empirical realisation of self-regulation in actual circumstances. This is what Alpha did when she recognised the inexorable progression of her illness and decided to refuse medical intervention in the future, subject to the proviso that if necessary her husband could to do what he thought she might have wanted. Her decision was made freely, incorporating an element to effect an empirical realisation of her choice. Beta's position was no different. He chose to withdraw his earlier refusal for life-saving treatment in recognition of the effect that his (short) period of recovery would have on his family.
A determination such as this is not a “single point” event but in fact represents a synthesis of several sub-determinations which (may) incorporate principles of autonomous or heteronomous reasoning or a combination of both, dependent upon specific individual factors thereby comprising a “holistic determination”. The final outcome or determination is an integrative process, freely arrived at and chosen by the individual without duress, or coercion. Beta knew that his medical circumstances had not improved so why should he have re-considered his position the second time around? Perhaps the initial decision was because of an absolute inwardly developed autonomous choice (the transcendentally free will). His second decision, which was also freely given, could be better understood through the paradigm of holistic determination since it was an integration of time dependent sub-determinations both preceding, and after, his first critical medical event. Holistic determination for oneself is therefore a paradigm that adds value to self-regulation.
V. Conclusion
Kantian autonomy offers a model of a reflective agent who engages in transcendentally free determination. This paradigm effectively disengages the influence of a multitude of other potentially intangible factors that are likely to be involved in decision-making.
We argue that Kantian based autonomous reasoning is unlikely to be the paramount paradigm in end of life decision-making. Drawing upon two clinical scenarios where competent advance refusals of treatment had been made it is proposed that even within this context, where orthodoxy accepts the paradigm of “autonomous determination” matters remain problematic. The purpose of providing these cases was not to provide an analysis of the legal matters, nor to use them tendentiously, but to use these as platform to air and discuss real issues and to stimulate debate about alternatives to autonomy at end of life. It is anticipated that this might be a first step towards translational benefits at the interface of theory and practice.
We propose the paradigm of “holistic determination for oneself” at end of life as an alternative to the Kantian conception of autonomous determination. The paradigm of holistic determination for oneself is conceptualised on the basis of sub-determinations which coalesce to form the final determination. Sub-determinations are each based upon a range of factors and may be made using autonomous, heteronomous, or any combination of reasoning prior to convergence to form the final determination. The integration of sub-determinations through an ascent of preferences forms the freely chosen final outcome or “determination for oneself”. This paradigm offers a unique perspective that is multi-axial (based on the levels of decision-making) and multi-dimensional (based on an on-going temporal inter-relational and integrative synthesis of decisions at all levels). In our view holistic determination for oneself offers a paradigm for making decisions that is tempered and universal and which we consider to be optimal for contemporary pluralistic societies. We conclude simply that holistic determination for oneself “is a far, far better thing to do than has been done before.”Footnote 116
