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Hope and terminal illness: false hope versus absolute hope. Eve Garrard and Dr Anthony Wrigley. Centre for Professional Ethics, Keele University, Keele, UK.
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Hope and terminal illness: false hope versus absolute hope Eve Garrard and Dr Anthony Wrigley Centre for Professional Ethics, Keele University, Keele, UK E-mail: [email protected]

Abstract Sustaining hope in patients is an important element of health care, allowing improvement in patient welfare and quality of life. However in the palliative care context, with patients who are terminally ill, it might seem that in order to maintain hope the palliative care practitioner would sometimes have to deceive the patient about the full nature or prospects of their condition by providing a ‘false hope’. This possibility creates an ethical tension in palliative practice, where the beneficent desire to improve patient welfare through sustaining hope appears to be in conflict with an autonomy-based requirement not to deceive patients about their condition. In order to resolve this ethical tension, we provide an analysis of the concept of hope and argue that there is at least one conception – the ‘absolute’ conception of hope – which when properly understood allows practitioners to foster hope in terminally-ill patients while avoiding any need to deceive them about their condition. Practitioners therefore do not need to shy away from using the language of hope in the palliative setting, as on this understanding of hope it can be used in a way that both promotes patient welfare and respects patient autonomy.

‘The natural flights of the human mind are not from pleasure to pleasure, but from hope to hope.’ Samuel Johnson: The Rambler (March 24, 1750)

Eve Garrard is Senior Lecturer in the Centre for Professional Ethics at Keele University. Prior to taking up this post she worked for several years for the Open University, and has a strong interest in teaching philosophy to adult beginning students. Much of her teaching is in applied ethics, to health-care (and other) professionals, particularly in the field of palliative care. Her research interests are in moral theory (especially theory of motivation); applied ethics, including bioethics; and also philosophical issues connected with the concepts of evil and forgiveness. She has published papers in these areas, and also on issues in euthanasia, palliative care ethics and research ethics, and has co-edited a book on moral philosophy and the Holocaust. Anthony Wrigley is Lecturer in Ethics and Director of the Knowledge Transfer Research Ethics Committee Training Programme at the Centre for Professional Ethics, Keele University. His research interests span both philosophy and applied ethics, with a particular interest in how the application of central areas of theoretical philosophy, such as metaphysics, can help resolve problems in ethics. His recent work has focused on the Non-Identity Problem and genetic essentialism in the area of reproductive ethics, moral authority in relation to personhood and advance directives, and the concept of harm. He has also written papers on the analysis and theoretical foundations of mental illness as well as ethical appraisals of legislation governing medicine, in particular advance directives and mental health. He is currently co-authoring a book on research ethics commissioned by the European Union.

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Introduction Hope, with its in-built orientation towards the future, is a centrally important part of every person’s life. Without hope, we can hardly form intentions to act, or see reasons to do so. To take away a person’s hope is to consign that person to despair and its concomitant paralysis of action. Sustaining hope in the patient, therefore, is an important element in all health care. But how are we to think about hope in the context of palliative care, where we are dealing with people who are terminally ill, and who know themselves to be so? Here as elsewhere, the welfare and quality of life of a patient is likely to be substantially better if she can maintain an attitude of hope towards achieving positive goals. And if we take seriously the dictum, widely endorsed throughout palliative care, that ‘patients should live until they die’, then supporting the patient’s hope may seem to be an important part of the palliative carer’s activities. However, there is an obvious ethical problem with sustaining hope in this way. In order to maintain hope in a terminally-ill patient, the kind of hope that would prevent a descent into depression and despair, it seems that the health-care practitioner might have to deceive the patient in some way about the likely (in some cases well-nigh certain) outcome of her illness. A practitioner who engaged in such a deception could be acting with entirely benevolent motives, but nonetheless the deception, by its very nature, would amount to a failure to DOI: 10.1258/ce.2008.008050

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respect the patient’s autonomy by encouraging her to adopt false beliefs about her future prospects. Benevolent paternalism of this kind is not currently well thought of in palliative care – honesty towards patients, even where this involves giving them very bad news, is a central pillar of much current palliative practice. Many practitioners would find it ethically unacceptable to deliberately deceive a patient on so important a topic.1 On the other hand, the loss of hope in a terminally-ill patient could have a dramatically adverse impact upon her welfare. So hope presents an ethical challenge in the palliative setting: can we instill and maintain hope in patients without misleading them about the inevitable outcome of their medical condition, or should palliative care practitioners be wary of using the language of hope, for fear of engaging in deception of their patients?

The standard account of hope Outside the theological view of hope as a virtue,2 the secular concept of hope has been widely treated as intentional – a state of mind oriented towards some desired state of affairs which is believed to be attainable.3 It is this view of hope which provides the underpinnings for the ethical dilemma which we have identified. On the standard account, hope is analysed into a belief – desire pair: a person hopes for a state of affairs, P, if and only if she desires that P, and believes that it is possible, though not certain, that P will come about. This pairing of beliefs and desires can explain many of the common uses of the term ‘hope’. For example, ‘I hope to catch the train on time’ can be analysed as my having a desire to catch the train on time, and also possessing the belief that it’s possible (but not certain) that I will do so. All sorts of variations, such as ‘I hope for a better life in the country’ or ‘I hope I don’t get caught’ can be understood in the same way. In each of these examples, the focus is on capturing the propositional content of hoping that something, with each example having a general form of ‘I hope that a state of affairs obtains’. It is a crucial feature of something being a genuine hope that satisfaction of the relevant desire is believed to be possible but not certain. For example, I don’t hope that I will get the job if I’m already certain that I have (or haven’t) got it. Just as we can’t hope for a state of affairs already known to obtain, so we can’t hope for it if we know that it doesn’t and won’t obtain. This allows hope to be distinguished from other, seemingly similar, attitudes such as wishing. When we wish rather than hope for something, we believe either that it is unobtainable or, at best, that it is very unlikely to come about. Hence we may wish for impossible things, but we cannot hope for them (and thereby we cannot hope for the ‘hopeless’). Hope is also different from optimism or ‘looking on the bright side’: unlike both of these, hope has a definite objective. Rather than being simply the disposition or tendency to believe that all outcomes will be ultimately for the best, hope on the standard account is focused on

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specific desires, and we can establish what counts as satisfying or disappointing them.4 We can assess the likelihood of the desires in question being satisfied, and proportion our hope for those satisfactions accordingly. Hope, on this analysis, can be rational or irrational: it is rational if it is proportioned to the probability of the desired outcome, so that the lower the probability, the weaker should be a rational hope for it. If it is highly likely that P will not come about, then on this analysis a strong hope for P will be irrational, and irrational hopes are false hopes. Maintaining hope in the patient for a desired outcome, whether it is remission from cancer, the development of a breakthrough cure, or the improvement of existing symptoms, is widely believed to have beneficial effects, ranging from bolstering the immune system to maintaining courage and avoiding a descent into depression.5 The maintenance or instilling of hope is therefore commonly seen to be part of the health-care practitioner’s duty to promote and safeguard the welfare of the patient. But there are many cases, particularly in the palliative setting, where the probability of the desired outcome happening is vanishingly small. Take, for example, an individual diagnosed with a terminal cancer, who may be hoping that she will live for another six months, in time to see the birth of her first grandchild. But her condition has advanced to a stage where the maximum expected life span is three months. It may be quite clear that maintaining her hopes would have a beneficial effect on the patient, whose life would be provided with a purpose and goal, and who would thereby be better able to cope with the privations of her condition. Without any such hope, the patient might live out what time remains to her in a state of despairing misery. But on the standard account of hope, her hopes are irrational ones – they are false hopes. Maintaining those hopes would involve, at best, misleading the patient about the likelihood of her living for another six months, or at worst, directly lying to her about her chances. The health-care practitioner who encouraged a terminally-ill patient to hope for recovery, perhaps by exaggerating the chance of miracle cures or the effectiveness of new treatments, would be instilling or sustaining a false hope by way of some kind of deception. It is this deception, and the failure to respect patient autonomy which it would involve, that seems so morally objectionable. The practitioner seems to be faced with a very unpleasant moral dilemma, in which whatever course of action he or she takes there will be unwelcome ethical implications. He can give the patient honest information about her prognosis, knowing that this may very well have a negative impact on her welfare; alternatively he can mislead the patient as to the probability of a cure or at least of lifeprolonging treatment, thereby allowing hope to be maintained, but also thereby deceiving the patient and failing to respect her autonomy. Either way there seems to be a clear breach of an important moral principle: one or other of the principles of beneficence and respect for autonomy will be flouted. What we need is a way of Clinical Ethics

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respecting the patient’s autonomy by not misleading her, while at the same time allowing her to benefit from maintaining a hopeful state. But this seems to be impossible, on the standard account of hope.

Hope without deception What we need to avoid this ethical dilemma is another and different account of hope. Alternative accounts are indeed available, and the need for them becomes obvious as soon as we consider the very wide range of ways in which we use the term ‘hope’ (for example, I may hope, and indeed work, for peace on earth and goodwill towards all, without being at all deceived about the likelihood of this coming about any time soon). But we cannot simply dismiss the standard account as false. It seems to capture a great deal of what is happening in our everyday hopes. So although we do need to expand the account of hope to cover a broader spectrum of cases and situations, we will have to do so in a way which leaves room for the applicability of the standard account to many cases, while allowing us to explain how hope can be maintained in the palliative setting, without recourse to deception and the concomitant failure to respect the patient’s autonomy. For a start, hope does not have to be construed solely as an attitude towards a specific proposition, which is constituted by a belief – desire pairing. McGeer6 identifies among various authors not only the intentional cognitive attitude of the standard account, but also accounts of hope as an emotion, a disposition or capacity, a process or activity, or some combination of all these things.7 What these additional accounts of hope have in common is a move towards conceiving of hope as a broad state of mind, rather than simply as the possession of certain specific belief – desire pairs. Perhaps the most substantial theory of hope as something more than a specific belief – desire pairing is given by Gabriel Marcel.8 – 10 Marcel’s account of the experience of hope explains the possibility of what is sometimes called ‘hope against hope’;11 it purports to show why it can be both rational and indeed admirable to hope against the odds, to hope in a way which isn’t carefully calibrated to conform to the possibilities of desire – satisfaction. Such an account does not suffer from the problems of the standard account of hope, where to ‘hope against hope’ is to have a false hope, and where full realization of impending doom cannot co-exist with hope if hope requires the presence of a belief that the desired outcome is possible. But on Marcel’s account, the maintenance of hope is compatible with an open-eyed grasp of the inevitability of the undesired, sometimes catastrophic, outcome; he sees hope as ‘absolute’ or ‘unconditional’ (in ways to be explained below) rather than as a desire for a specific object or state of affairs with an associated belief about the relevant possibilities. This experiential conception of hope can enable us, so we shall argue, to resolve the ethical dilemma about the maintenance of hope in the palliative setting. Clinical Ethics

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Marcel’s account of hope stems from his reflections upon the experiences of prisoners in World War I. Marcel saw parallels between captivity and illness, since both involve what he took to be a central human experience: situations in life which are deeply and personally involving, and which also may prevent a person living in the ‘fullness of life’.8 These situations (which Marcel calls ‘trials’) are ones in which adverse outcomes are of profound personal importance – outcomes which any individual would find deeply meaningful, and would struggle to prevent, rather than merely to observe as a detached spectator. Hence they are also those situations that give rise to the temptation of despair, because they threaten to prevent a person from living a full life. Hope is conceived of as a response to this temptation to despair: ‘It is not merely a means to overcome some particular temptation, but a disposition to overcome all such temptations’.11 This means that hope – of the special kind which Marcel calls ‘absolute’ hope – can only exist where the temptation to despair exists. So while the standard account of hope may capture our mundane and everyday cases of hoping, Marcel’s account deals only with hope in those situations that are significant enough for the human condition to threaten us with despair. Since ‘absolute’ hope is intimately linked with despair by being conceived of as its direct opposite, it is not surprising that Marcel’s account explores the features of hope through a contrast with the features of despair. Marcel characterizes despair as having three central features: (1) capitulation to one’s fate; (2) the view that time is ‘closed’ and will bring no new factors for positive change in the future; and (3) a sense of solitude and withdrawal from the world. The first of these, capitulation, is not simply recognition of the inevitability of my fate, such as an acceptance of the fact that, for example, my illness is terminal and incurable. Rather, it is ‘to go to pieces under this sentence. . . to renounce the idea of remaining oneself’;8 where one becomes so absorbed by the idea of one’s own destruction that it is all that is anticipated. This aspect of despair leads us to abandon our sense of personal self and to identify instead with what it is thought the trial will make of us – to identify ourselves, that is, solely with the adverse outcome. Hope, in contrast to this state of despair, involves rising above the fascination of one’s inevitable end and finding some means of retaining personal integrity or sense of self in the face of it. As a feature of terminal illness, maintenance of this sense of self would inevitably be a significant part of understanding what it is to ‘live until you die’. The second aspect of despair, an experience of time as ‘closed’, is a matter of viewing everything as already fully determined. By experiencing the passing of time in this way, the belief is formed that time will bring no new possibilities but only a ‘repetition of the factors that effect my captivity’.4 This aspect of despair goes hand in hand with the first one – the anticipation of the inevitable outcome – as the passing of time becomes an impatient waiting for this end, and a refusal to engage with any perceived delay towards reaching that end. In opposition to this,

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hope is, at least partially, characterized by a view of time as open rather than closed. To have such an experience of time is to have an ability to wait, but to wait patiently and actively rather than impatiently. So although the inevitable outcome is clearly perceived, it is not fixated upon, it does not fully and obsessionally dominate one’s consciousness; and one’s normal pattern of life is maintained without being distorted by one’s inevitable demise. Time therefore also remains a creative process, containing the possibility of new experience, rather than the closed experience of life as having nothing more to offer. As time seen as closed is also a conception of time as enclosing or imprisoning us, this leads to the third aspect of despair – solitude and a withdrawal from the world.8 Despair, when characterized in terms of solitude, is not the physical isolation of being alone, but rather the turning inwards of oneself to focus only on the inevitable end, thereby abandoning involvement with other people. Hope, in contrast, maintains this communal aspect to life. This is perhaps what distinguishes Marcel’s account of hope most dramatically from the standard account. Absolute hope is not primarily hope for a specific object or state of affairs. It is best understood as ‘hope in someone’,11 and this communal aspect of hope is one of the most distinctive features of Marcel’s account, and also one of the most challenging to explain. One way of understanding this final element is as a form of hope that is not self-centred or wanted ‘for my own sake’.4 Absolute hope is not so much hope for myself but rather hope in terms of the sharing of life and outcomes. This does not require (though it certainly lends itself to) a theistic conception of communion and salvation in order to make sense; rather it is the belief that hope can be manifest in the bonds involved in all forms of relationships: for example between patriot and country, between mother and child, between patient and carer, and so on. So absolute hope, as Marcel conceives it, has three central aspects which oppose it to despair. Firstly, hope rises above the inevitability of one’s fate and maintains one’s integrity in the face of it. This means that hope is not crushed by the recognition of one’s inevitable fate, but also does not struggle against it. Although it recognizes the inevitability of destruction it refuses to anticipate it in a self-obsessed way. Secondly, hope incorporates a view of time as open and filled with the possibility of experience. Thirdly, hope refuses to turn inwards into solitude: it has a communal aspect, which involves hope in others. This account of absolute hope radically diverges from the standard account of hope in terms of a specific belief – desire pairing. Absolute hope is an overall stance towards life, and a fundamental part of human experience. And this construal of hope offers us a way of resolving the ethical dilemma that initially arose with the standard conception of hope. The preservation and maintenance of absolute hope would be entirely congruent with protecting the welfare of the patient, as absolute hope is just what prevents the descent into despair. However, awareness of one’s fate or inevitable end is also a central feature of

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absolute hope, so it seems to be fully in accordance with respecting the patient’s autonomy.

Problems with the concept of absolute hope Before discussing the final direct application of absolute hope to the palliative setting, a number of objections to this conception of hope need to be addressed. We shall deal here with three of the most pressing ones: (1) whether maintaining this form of hope in the palliative field can lay patients open to exploitation; (2) whether this form of hope is anything more than merely the platitudinous injunction to ‘always look on the bright side’; and (3) whether this conception of hope is sufficiently similar to our common understanding of the term to justify seeing it as a form of hope, rather than as another kind of phenomenon altogether. (1) There is a genuine welfare concern that the promotion of hope in the case of the terminally ill might leave them vulnerable to exploitation by others, such as those offering ‘miracle cures’, or, more subtly, those who rely upon the patient’s hope to make her choose options to which she otherwise wouldn’t consent, such as exposure to significant risks. In the palliative context, a patient with terminal cancer might be led to take up ‘alternative cures’ that falsely offer remission or significant prolongation of life. Alternatively, such a patient might be persuaded to take part in risky or distressing research or clinical trials, because their hopes lead them to a different and unrealistic assessment of the risk – benefit ratio.12 It is true that the presence of absolute hope may lay the patient open to such exploitation. But this claim is a trivial one (unlike the exploitation itself, of course, which isn’t at all trivial). This is because anyone in those circumstances is open to exploitation, regardless of the conception of hope with which we are operating – it is as true of the standard account as of the absolute conception. So this cannot count as a special objection against the absolute conception of hope. The provision of accurate information about efficacy and outcomes is a practical and regulatory problem affecting all professionals working in palliative care. In the case of absolute hope, the appropriate maintenance of this form of hope is directly reliant upon facing and coming to terms with the inevitability of a terminal condition. So while it is true that one crucial element of absolute hope is to view time as filled with potential possibilities, it is not characterized by, and indeed is not compatible with, a desperate search for any cure or prolongation of life. An obsessive desire to seek out new potential cures is no part of absolute hope, so in fact the scope for exploitation is limited. This does not mean that genuine new treatment options will be rejected, but it does mean that the possession of absolute hope will not lead to a clouding of one’s judgement in these matters. Moreover, it may well be part of the professional’s ethical duty to maintain such hope in terminally-ill patients by clearly indicating the extremely low Clinical Ethics

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probability of a successful outcome through pursuing such methods, a procedure which stands in marked contrast to the instillation or maintenance of false hope. (2) Does absolute hope really amount to anything more than a general encouragement of optimism, perhaps by deploying vacuous platitudes about looking on the bright side? The link between optimism and hope seems intuitively obvious – both seem to have a positive outlook on what the future holds. However, any conflation of the two (a conflation which is specifically rejected by Marcel) is illusory. Optimism is the belief that everything will turn out for the best.13 Absolute hope involves no such claim. It acknowledges that some things will definitely not turn out for the best, but it refuses to allow that truth to saturate all other aspects of life. It remains open to such goods as are still available, and it intimately involves the individual in her relationships with the rest of the world. In contrast, optimism, according to Marcel, focuses on some better future in a way which is detached from the individual; it is a stance which is ultimately that of the spectator, and hence it has the potential to distort the individual’s involvement with the world. (3) Finally, there is a concern that absolute hope is not in fact what we mean when we commonly use the term ‘hope’. This objection is to some extent correct. There are many varieties of ‘hope talk’,4 and indeed there would have been no reason to call the standard account of hope ‘standard’ if it did not provide an intuitively acceptable analysis of a very common use of the term. However, as we have seen, the standard account of hope does not seem to adequately capture what is needed in the palliative setting. The absolute conception of hope, however, provides another account of hope that we can appropriately draw on when we talk of hope for terminally-ill patients.14 Marcel’s account of absolute hope is based upon an account of despair. We all have some intuitive grip on what a despairing person is, and that the alternative is a hopeful person, and this supports the claim that absolute hope is indeed a variety of hope, rather than of some other state. There is also some degree of overlap between the two accounts of hope. Absolute hope does leave room for there to be specific things that are hoped for, and believed possible to attain, on the model provided by the standard account. But on the absolute conception, such belief – desire pairings are not the only, nor even the primary, ways in which hope figures in our lives.

hence practitioners need not be wary of employing the language of hope as part of their care for their patients. The absolute conception does not seek to replace the standard account of hope, which is appropriate for many commonplace cases where we hope that a specific outcome will be achieved. Instead, it allows for a modicum of integration: within the absolute conception there is still room for specific objects or states of affairs to be hoped for. Unlike the standard analysis, however, the absolute conception provides a substantial account of hoping that applies to some of our most profound life experiences – those in which there is a significant temptation to despair. One final issue should be mentioned: can absolute hope be maintained in situations that appear entirely hopeless, where the terrible facts of the matter are that nothing but pain and suffering awaits an individual? Such a view of hopelessness is, arguably, something of a hangover from the standard account of hope, with its reliance on beliefs about probabilities. Even cases of abject misery in the palliative setting may leave room for absolute hope, involving a constant engagement with others and negotiation with the world, even within extremely limited boundaries.6 In some situations, of course, this may be a desperately difficult thing to do. Not to give in to despair and to maintain hope in these cases may only be possible for the strongest and most virtuous of agents.15 We do not wish to underestimate the difficulties here, nor to engage in cheap boosterism16 about the availability and efficacy of hope. But we should not ignore the possibility that even in such circumstances, there may still be an active role both for patients and professionals to play. Attempting to foster hope rather than leading a battle against the odds, attempting to explore even the most restricted range of goals within the limits of a life, is something that is deeply congruent with the palliative goal that patients ‘should live until they die’.

Acknowledgements We would like to thank Angus Dawson, David Garrard, David McNaughton, Philip Stratton-Lake and Stephen Wilkinson for some very useful discussion, comments and help with this paper. We would also like to thank colleagues from PEAK who formed part of the original research group where ideas for this paper (and others) were first discussed.

Hope and palliative care The absolute conception of hope fits well into the palliative setting. In particular, it offers a solution to the problem we started with: the ethical dilemma that faces professionals working with the terminally ill. Fostering absolute hope provides the welfare benefits of helping patients to cope with a terminal condition, while also respecting their autonomy by providing a full and accurate explanation of the prognosis. On this construal, the maintenance of hope requires no deception of patients about the severity of their condition or the prognosis, and Clinical Ethics

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References and notes 1 This commitment to telling patients the truth is a central part of the current palliative care ethos. However, private communications from practitioners suggest that sometimes they do find it very difficult to refrain from supporting, or at least failing to challenge, hopes which are clearly false 2 St Augustine Enchiridion. In: Bourke VJ, ed. The Essential Augustine. New York, NY: New American Library, 1964 3 Day JP. Hope. American Philosophical Quarterly 1969;6:89– 102 4 Godfrey JJ. A Philosophy of Human Hope. Dordrecht: Martinus Nijhoff Publishers, 1987

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5 Ferrell BR, Coyle N, eds. Textbook of Palliative Nursing. 2nd edn. Oxford: Oxford University Press, 2005 6 McGreer V. Trust, hope and empowerment. Australasian Journal of Philosophy 2008;86.2:237–54 7 Establishing the extent to which these varying accounts actually differ involves addressing some interesting metaphysical issues, but we do not have space to do justice to them here 8 Marcel G. Homo Viator: Introduction to the Metaphysics of Hope. 3rd edn. Crauford E [translator]. New York, NY: Harper & Row, 1965 9 Bloch E. The Principle of Hope. Plaice N, Plaice S, Knight P [translators]. Oxford: Blackwell, 1986 10 Kant I. Critique of Practical Reason. Beck LW [translator]. New York, NY: Macmillan, 1985 11 Stratton-Lake P. Marcel, Hope and Virtue. In: Giles J, ed. Sartre and the French Existentialists. Amsterdam: Rodopi, 1999:139–53

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12 Martin A. Hope and Exploitation. Hastings Center Report 2008; 38.5:49 13 This is the conception of optimism to which we are contrasting absolute hope. There are of course other and less crude construals of optimism, and some of them may be more akin to Marcelian hope than the conception which are considering here 14 This does not, of course, mean that other accounts of hope cannot be (or are not) employed in this context, as there may be other accounts of hope that are used in various ways. What is important to emphasize here is that the absolute conception of hope is particularly well-suited to the palliative setting 15 We use ‘virtuous’ here in the sense given by virtue theory. It is not meant to be pejorative that individuals cannot maintain an excellent ‘ideal’ of character in such circumstances, as this may be the preserve only of the ‘saintly’ or most outstanding of characters 16 Murphy J. Getting Even. Oxford: Oxford University Press, 2003

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