#but that wider perspective means that each moment itself needs less internal contrast

[ferociouslycreativemystery]

Excellent video on the effects of colour grading and on storytelling

[bluewatsons]

Malcolm Parker, Medicalizing meaning: demoralization syndrome and the desire to die, 38 Australian & New Zealand J Psychiatry 765 (2004)

Abstract

Objective: To critically analyse the proposed new psychiatric condition, demoralization syndrome, and the implications drawn by its proponents for the clinical–ethical status of requests by terminally ill patients for assistance to die.

Method: The diagnostic features of demoralization syndrome, a proposed new psychiatric disorder, recognizable particularly in palliative care settings, are summarized. The consequences of proposed therapeutic interventions are described, one of which is relief of the desperation which motivates some demoralized patients to consider ending their lives and to seek assistance in dying. The connections between the proposed condition and the desire to die are analysed in the context of the continuing tensions surrounding the ontological status and sociopolitical implications of psychiatric categories and the pervasive medicalization of modern life.

Results: The analysis suggests that by medicalizing existential cognitions at the end of life, the proposed diagnostic category also normalizes a particular moral view concerning assistance in dying.

Conclusions: While further research into the issues described in this provisional syndrome may benefit some patients, the categorization of demoralization as a medical diagnosis is a questionable extension of psychiatry’s influence, which could serve particular social, political and cultural views concerning the end of life.

Existential distress and despair, hitherto exempt from direct medical concern, are beginning to receive attention in different clinical settings, including palliative care. Australian palliative care health professionals have recently described the demoralization syndrome (DS), and propose that it be recognized as a mental disorder for the purposes of treatment, training and research [1,2]. These researchers identify DS as a conceptual/clinical theme common to a number of conditions, both physical and psychiatric, especially conditions which ‘threaten life or integrity of being’ [2].

The core phenomena of the proposed new psychiatric category are hopelessness, helplessness, powerlessness to cope and to change things (impotence or incompetence), the loss of a sense of control and security and meaninglessness: in short, existential despair. Existential distress and despair arise from the ‘givens of our existence: our death, the meaning of life, aloneness, our responsibilities with their inherent freedom and choices, and our worth as a person’ [3]. Severe existential distress is one of the ways in which we partake in the universality of human suffering [4]. It is the internal experience, more than the outward symptomatic expression of that experience, which proponents of DS emphasize, although from a diagnostic perspective, the symptomatology is clearly important. The internal experience is ‘a frightening experience that attacks one’s self-efficacy and esteem’ [2]. Demoralization is not an experience of the body, or of the mind, but is suffering experienced by the person due to an assault on his sense of self [2]. In fact, the distinction between the symptoms and the experience of demoralization is somewhat blurred, given that the symptoms are expressions of existential feeling states, including feelings of apprehension and threat, feelings of incompetence and loss of control, hopelessness, isolation and meaninglessness [2].

It is suggested that if we recognize DS as a distinct condition in the terminal phase of serious illness, this will help overcome the situation where the demoralized patient must struggle with symptoms usually regarded as appropriate for this context and consequently as not requiring specific treatment or support. It is also said to be important to regard DS as always abnormal [2] (my emphasis), since regarding it as a normal response to adversity is to minimize its clinical importance. This is not to say that it is not understandable in the contexts in which it arises. To characterize the condition as an adjustment disorder is also said to be insufficient to alert clinicians to the maladaptiveness of the cognitions which occur [2,5], and inappropriate because the boundaries of adjustment syndrome appear to be too indistinct [6].

In terms of the construct validity of DS, multiple factors are thought to operate, including early environmental factors, which may influence levels of resilience and ideas of self-worth, lifetime losses and tragedies and familial relationships [1]. Demoralization syndrome is distinguished from depression in that loss of motivation can be an associated, but not a defining feature, as it is in depression [1,2]. Depressed people may ‘know what to do’, but lack the motivation to carry out the appropriate action, whereas demoralized people are prevented from acting by not knowing what to do. While depression prevents the sufferer from deriving pleasure in the present moment, demoralized patients can enjoy present pleasure but are denied anticipatory pleasure. The future is perceived as hopeless from a present state of pessimism, helplessness, loss of purpose and meaning and entrapment [1]. There may be associated social isolation but this too is not essential to the diagnosis. Researchers cite evidence of other associations, including old age, disfigurement, disability, dependency, concern about being a burden on others, fear of loss of dignity and importantly, a desire for death [1,2,7]. Demoralization is the common factor in people who express a wish to die, including those who are personality-disordered, have cancer or are depressed [2].

More research is required to establish the validity and reliability of this condition and to delineate it from depression, with which it shares a number of features. But accepting DS as a provisional psychiatric category would arguably allow for wider investigation aimed at establishing whether or not it is subject to reliable recognition and effective treatment. Arguably, some people with terminal illnesses, who are experiencing despair, helplessness and loss of meaning, could be helped by an expanded medical sensitivity and skill-base. Because not all people experience these things as they approach their death, ‘demoralised’ patients are considered to be undergoing a process which should not simply be accepted.

Psychiatrists and other health professionals may help the demoralized patient through a range of modalities, including relief of physical and mental symptoms, cognitive behaviour therapy, goal setting and empathic understanding, but proponents emphasize the importance of ‘being with’ the patient and valuing the patient as a person and discussing the patient’s relationships, meanings, purposes and understandings of their life and their world [2]. Here especially, the doctor–patient relationship itself is seen as a potent therapeutic tool. Researchers also point out that treatment should not be over-professionalized, but this seems to be in the sense of not restricting care to specialized psychiatric help, rather than encouraging help from outside the health system [2]. The fundamental aim of treatment is to help restore, as much as reasonably possible, hope, purpose, meaning and connection, to the person who is facing a threat to his existence and also to help him achieve at least some resolution or acceptance in relation to major personal and family issues.

Demoralization, informed consent and the desire to die

Many people move calmly toward the end of their lives, accepting more limited activity and increasing dependence, satisfied with having led a fulfilling life and retaining a sense of meaning and purpose [3–5,8]. Questions seldom arise in relation to the decision-making competence of these people, unless they begin to suffer familiar maladies which impair cognition, such as stroke and dementia. In contrast, proponents of DS consider that the cognitions which constitute DS interfere with a patient’ s competence to make autonomous choices. Hopelessness and vulnerability can colour a person’s perceptions concerning treatment options, and they may fail to appreciate the potential for treatment of their condition [8]. There is evidence that hopelessness is a predictor of suicidal ideation [1,9] and demoralization can motivate the request for assistance to die, because it affords some sense of control over the otherwise hope- less situation [4].

These connections are not surprising: we might well expect feelings of hopelessness, dependency, meaning- lessness and the lack of a worthwhile life to motivate a person to seek to bring his or her life to a close. It is thought that the same feelings might also be transmitted to the staff of an institution caring for the person, leading to an affirmative response to the person’s request for assistance to die, in order to relieve their existential suffering [1]. Proponents of DS point to the dangers of the vulnerability of patients who may be tempted to imbue their death with meaning by opting for an assisted death. They urge the view that apart from cases of altruistic suicide, any managed death, while frequently perceived as rational and controlled, actually seeks to glorify mastery over any pain or shame in life [10] and that such managed deaths negate the worth of people’s lives.

The following claims support this position:

Clinicians need to recognize the hopelessness hidden beneath a rationally presented desire to die. While intellectually each one of us might conceive of a rational suicide, in clinical practice, making explicit the reasons that underpin this choice reveals a different narrative with complex circumstances [1].

Suicidal thoughts develop in the demoralized person who can see no other way out. Yet such patients may not be depressed and thus may be perceived by clinicians to rationally choose suicide as a merciful conclusion to their life [3].

Rational suicide is an intellectual notion . . . A request for euthanasia is invariably a cry for help [3].

This is an interesting and important set of claims. They suggest that people who make requests for assistance to die are necessarily suffering from a psychiatric disorder which should be treated. Of course, depression too, is a disorder which sometimes motivates requests for active assistance to die. Most people, whether they generally support or oppose voluntary euthanasia, would accept that depression should be excluded, and if present, treated until it remits, as a minimum condition of autonomous consent in any assisted dying program. Similarly, a patient whose life is being sustained by medical treatment and who requests that treatment be removed, should be carefully assessed for the presence of clinical depression, prior to the treatment being withdrawn. However, based on the claims stated earlier, the acceptance of DS as a psychiatric disorder would pathologise all requests for active assistance to die, including a request which persisted, despite the successful treatment of a depression which was thought to originally motivate it and where that success is based on the relief of symptoms other than the request. This is because, according to the claims above, a persisting request for assistance to die would remain an irrational request, implying the existence of DS. However, there are people who not only are not depressed, but also are not hopeless, despairing or isolated, and who do not lack for meaning in their lives, yet still request assistance to die.

Responding to apparent cases of DS could result in some people withdrawing their requests for assistance to die (as treatment of depression sometimes does) and it is important to continue researching DS, to see how it is distinguishable from depression and consequently subject to alternative treatment modalities, which can help patients negotiate their painful experiences. However, the medicalization of the allegedly necessary connection between DS and requests for assistance to die deserves further scrutiny. It is built upon the ideas mentioned above, that DS should be regarded as always abnormal and that the cognitions constituting DS interfere with a patient’s competence to make autonomous choices. These claims appear to rule out the possibility that the characteristics and the experience of DS can ever be appropriate, that is, neither abnormal nor pathological. This seems odd, given that the proponents of DS provide sensible explanations of why it arises in the circumstances in which it does, for example: ‘People suffer and become demoralized because they have lost, or feel they are losing, something critical to their sense of self’ [2]. To respond to such normal reactions in order to help people in their struggles is one thing, but to pathologise them is a further, and critically powerful step. In order to see why this is the case, it will be helpful to examine the idea and history of medicalization, particularly within psychiatry.

Medicalization

Since Ivan Illich argued the oppressiveness of medical professionalism in Medical nemesis [11] and christened the mid-twentieth century the ‘Age of Disabling Professions’ [12], medicalization has come to be understood as a social/institutional process, sometimes with harmful consequences, as well as its clearly beneficial ones. Indeed, usage tends to align the term with the negative aspects of medical influence, making it ‘synonymous with the sense of a profession reaching too far: into the body, the mind, and even the soul itself’ [13]. Medicine’s role in the explosive progress of science, during the later nineteenth and the twentieth centuries, illustrates the activism and instrumentalism resulting from the increasing secularization of the West since the Enlightenment and the Industrial Revolution [14]. For some people, health seems to have become an end in itself, rather than one of the means to a good life replete with higher aspirations, now that the promise of an afterlife attracts less intellectual and individual support. Lifestyle interventions and preventive imperatives continue to influence personal and social life, as a result of the socially legitimated roles of medical and health experts in alliance with government strategies aimed at welfare provision and cost containment. Most experts still deal with individuals, who are the repositories of and sufferers of illnesses which need attention. Until relatively recently, patients were generally the passive recipients of ‘expert’ care. Health has become an important codifier for ideal individual and social states of affairs [15].

Illness increasingly includes categories previously accepted as deviance and the medical profession has played an increasing role in defining and regulating these categories. Fox points out that: however permissive and merciful it might be to expand the category of illness . . . there is always the danger that the society will become a ‘therapeutic state’ that excessively restricts the ‘right to be different’ and the right to dissent [15].

While independent arguments for the right to assisted death need to be made, it is likely that those who believe in such a right, including some people who may well be diagnosed as suffering from DS, would consider themselves the victims of a ‘therapeutic state’ which demanded that they be treated whenever a request for assistance in dying is made.

Our expectations and actions are influenced by whether or not something is regarded as a medical problem. Familiar examples are childbirth and homosexuality. Antenatal care has long been considerably medicalized with, only recently, a cautious retreat occurring from some of the assumed necessities of routine testing (e.g. obstetric ultrasound and urine dipstick testing), which have now been demonstrated to provide little or no benefit [16,17]. Debate has also recently developed over the medical normalization of prenatal genetic testing, with many parents and disability advocates rejecting the medical assumption that foetuses affected by abnormalities should be terminated [18,19]. Within the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association, the status of homosexualtiy has evolved from sociopathic personality disturbance (DSM-I), to personality disorder (DSM-II), to psychosocial dysfunction (DSM-III). DSM-IV makes no mention of homo- sexuality as a disorder, thus finally demedicalizing a category cast as a sin prior to its medical career [20].

Social evolution affects medical classification and medical classifications reflect deeply held opinions, values and goals. What counts as a disease depends on whether it gets in the way of individuals’ or groups’ goals and purposes [21]. When considering any new category such as DS, we should think critically about the sense in which it is being proposed as something to be resolved. Is it a state of affairs, for which good reasons to rectify or treat it, always exist? Are there different ways of responding? I suggest that there are good reasons not to restrict ourselves to a medical treatment response in all cases of DS. In certain cases and perhaps following efforts to provide effective treatment, it will be appropriate to accede to the wishes of patients to be assisted to die. In others, it may be most appropriate to simply be with a person as he experiences his grim situation.

Assisted dying has itself been criticised as medicalization gone amok. Many people see an assisted death as the medicalized (pejorative sense) death par excellence, as an inappropriate exercise in medical influence and activity. However, conceptualizing medicalization normatively requires care. For example, Jane-Elizabeth Seymour has pointed to the taken-for-granted polarization of technology and natural death, and the consequent reification of natural death, within the recent literature on dying [22]. She found in case studies of deaths in the intensive care unit – a setting obviously medicalized in the neutral, narrowly technical sense – that a ‘natural’ and acceptable process of death was preserved for the companions of the dying patients, because they could understand the technology and see that it served the good intentions of the carers and perceived it to fit in with the current context of the patients’ lives. Medicalization is thus a social institution, informed by values and purposes, not simply a technological process.

I propose that to regard the features of DS, at least in the terminal illness setting, as characterizing an entity which should always be medicallly treated, is to illegitimately medicalize an aspect of human reality, where medicalization is understood to be the annexation to medical dominion of areas of life previously categorized differently, through the exercise of institutionalized medical power [23]. Such annexation is an example of psychiatric colonization, whereby psychiatry extends its positivist aspirations to behaviours which are better viewed as strategies for coping. Because psychiatry is rightly but also so generally absorbed with the preven- tion of suicide, it cannot brook suicide as a rational strategy in the face of the demoralization which attends terminal illness, but insists on the presence of a disorder requiring the intervention of experts.

Psychiatric nosology, values and power

Just as ‘medicine medicalizes reality’ [21], the development of the DSMs has been described as a process of medicalizing psychiatry [24]. This is an acceleration of a process which began with the Hippocratic inclusion of madness in naturalistic, as opposed to supernatural and demoniacal, explanatory schemata [25]. The purpose of the new frameworks was practical treatment

by physicians and the relief of distress [26]. Porter suggests (against Foucault’s and others’ more extreme claims that institutional psychiatry grew largely out of the need for efficient social control in the emerging industrial society) that asylums developed during the eighteenth and nineteenth centuries for a variety of purposes (segregation, profit, the protection of families’ social status), but also that psychiatry began to develop in order to better manage the incarcerated and to help at least some patients achieve cure [26]. This was stimulated by the twin Enlightenment values of scientific progress and liberal individualism. However, because many physicians at this time claimed that madness was a category of moral problem, they offered various explicitly ‘moral’ therapies over which they had monopoly [27]. While most modern psychiatrists would protest that they no longer utilize moral treatments of any kind, DS illustrates how modern psychiatry may threaten individual freedom in a less explicit way, through defining DS as an inappropriate, maladaptive response.

Academic psychiatry initially developed in response to and as part of Enlightenment thinking, and began to place importance on observation and on non-organic and acquired psychological dysfunction, although numerous organic theories and categories continued to be put forward as well, culminating in Kraepelin’s natural history-based nosology at the end of the nineteenth century. Freud defended psychoanalysis as scientific, but psychodynamic ideas and therapies took psychiatry some distance from developing mainstream medicine until the middle of the twentieth century, when the first of the effective psychotropic drugs was discovered. Pharmacotherapy and the alliances between researchers and drug companies redirected psychiatry toward organic, technical medicine and strengthened psychiatry’s aspirations to be a respected category of the medical firmament. The development of the DSMs has served those aspirations by increasingly systematizing psychiatric categories.

DSM-1 (1952) and DSM-II (1968) were succinct lists of then-accepted diagnostic categories, but with DSM-III (1980) a substantial increase in detailed descriptors, the inclusion of comorbid conditions and the introduction of multiple diagnostic axes made the system considerably more useful for communication, teaching, research and treatment [28]. This expansion was extended with DSM-IV (1994), for which 150 applications were received for the inclusion of new clinical categories [28].

The difference between the reception of DSM-III and that of DSM-IV was significant. By 1994, science in general was no longer seen as knowledge resulting from pure unmediated observation and the idea of any atheoretical and value-free classification of the world (or of a patient’s symptoms) had been abandoned [29]. Psychiatric classification must accommodate multiple theoretical constructs, so the achievement of a concise, empirically objective and uniform classificatory system is unrealistic. Some critics have called for a demotion of the dominance and influence of the DSMs, because of the severe limitations in scientific knowledge in psychiatry, but point out that this would mean that psychiatry is not really a part of medicine, which would defeat one of the aims of the DSM system [30]. The detail and systematization of the DSM-IV tends to reify and essentialize the disorders described and this is, according to these critics, an unwarranted assimilation of psychiatric disorder to the medical model.

Accepting the impossibility of a purely objective description of psychiatric disorder depends in part on accepting that our judgements of health and disease involve both descriptive and evaluative elements. We need to understand how and to what extent human interests can determine what we take to be the facts of our classificatory systems [31].

As Sadler indicates:

The awareness of values in diagnostic classification is not limited to just the negative values of suffering from symptoms and their consequences . . . values shape what is clinically relevant (what the clinician sees or doesn’t see); what clinical evidence is salient, useful, or otherwise important; the criteria of pathology; the credibility of the diagnostic process, even the priorities in designing a classification [32].

Some critics of mainstream psychiatry are somewhat stronger in their disagreement with its apparent rationale as an arm of beneficent medical practice. While less trenchant than Thomas Szasz and the UK antipsychiatry movement of the 1960s and 1970s, the UK Critical Psychiatry Network, for example, currently argues a more political–industrial line, suggesting that the biological turn in psychiatry in the second half of the twentieth century arose as a result of an alliance, often unwitting, between academic leaders and pharmaceutical companies, which significantly extended the reach of psychi- atry [33]. Clinical categories which facilitated this development include social anxiety/phobia, characterized as the medicalization of shyness and post-traumatic stress disorder, initially ‘discovered’ when the suffering of Vietnam war veterans was recognized, but subsequently expanded to include less extreme situations encouraged by compensation claims [34]. The current governmental, clinical and individual focus on the apparent world-wide explosion in the incidence of depression is also argued by some commentators to draw attention away from political and environmental factors which lead to distress (e.g. the screening tools available for public use in the beyondblue National Depression Project arguably tend to medicalise mild to moderate everyday distress: http://www.beyondblue.org.au/site/) and to feed the drug companies’ demands for new markets for their products.

To what extent such political influences may be at work in the development of DS is difficult to say. It is certainly not the case that the development of this new diagnosis is motivated by a desire on the part of its proponents or drug companies to prescribe more medications, since the suggested treatments consist of empathic support, psychological exploration, cognitive behaviour therapy and family therapy [2,5]. These modalities are more difficult and time-consuming to provide than medications and require more direct contact and ongoing work with patients. Nor is there any reason to believe that advocates are not primarily motivated, at least consciously, by the desire to ameliorate human distress, rather than to maintain the status quo concerning assisted dying.

Nevertheless, power is exerted in many ways, including unconscious ones. There is reason to think that the proponents of DS are exerting the power, not of a specif- ically biological psychiatry, but of mainstream psychiatry and its background medical culture nonetheless, for purposes which go beyond the relief of psychological distress. As shown above, the aim of providing relief to particular patients by establishing a new formal diagnostic category has also defined requests for active assistance to die as pathological, because they are deemed irrational. Thus, the package of diagnostic and treatment proposals includes, implies and consequently helps to further entrench the long-standing social–moral position taken by the medical profession against assisted dying. Whether this is an intentional result or a convenient one, it illustrates how human interests and purposes may well partly determine what we take to be the facts of our classificatory systems.

Medicalizing meaning at the end of life

Whether a state of affairs or practice becomes medicalized usually depends on changes in cultural beliefs, assumptions and values, which lead to the perception that it is most appropriately dealt with through the application of medical methods. Prior to this and more fundamentally, it depends on the perception that it is a state of affairs which is somehow bad and needs intervention and resolution. Medicalization, for good or ill, is the recategorization of an aspect of social or personal life as a medical matter, through the exercise of institutionalized medical power. The modern process of medicalization is usually regarded as part of the general secularization of society and as the natural consequence of the rapid expansion of science during the later nineteenth and twentieth centuries. But medicalization can also occur in reaction to social change and may not always develop in a secular direction.

Psychiatry medicalizes in order to provide better treatments, but also in an attempt to achieve the objectivity traditionally attributed to organic medicine and to thereby achieve both the respect and standing of organic medicine. As suggested above, nobody still seriously maintains that the expanding systematization of psychiatric classifications through the DSMs consists entirely of purely objective descriptions of psychopathological realities, diseases or disorders which occur ‘in’ people. The existence and operation of the evaluative elements in diagnostic categories and practices are now reasonably well understood and accepted. This does not necessarily detract from the utility of the classificatory schemes for clinical practice, research and education, but it places important caveats on the kinds of claims which can be made for them. It is important to remain aware of the moral and evaluative presuppositions which inhabit diagnostic classifications and the different purposes for which we might designate something a condition or a disorder.

Just the name ‘demoralization syndrome’ should set our antennae buzzing. If to be demoralized is to suffer and feel anxious about death, to be ambivalent about the value of one’s life, to be devoid of meaning and purpose and without hope, it is to be in a state which does not unambiguously call for purely medical management. Responding to such a state requires us to interact with many complex concepts and evaluations, which are much more than observable symptoms and demand more than medical expertise.

All people desire a good death. It is somewhat ironic that proponents of DS concede that

Differing views on a dignified death will affect the decisions made by doctors, the choices they offer, and their support for the choices made by dying people. Medical responses to such requests are influenced by moral and theoretical positions on medical roles in relation to patient autonomy [35].

This appears to be a concession that if DS were to be accepted as a psychiatric category, choices concerning death would be constrained by the views of its developers on what constitutes a dignified death, which is a central theme of this paper. It is to endorse Sadler’s observation (above) that ‘values shape what is clinically relevant’. Given that the prevention of suicide is regarded as a central task for psychiatry because of the strong though

contingent links between suicide and mental disorder, and given that the proponents of DS appear to pathologise all requests for assistance to die as maladaptive and harmful, the proposed category would then effectively and ‘scientifically’ define out of contention what many people now see as a matter of social choice, and the subject of social debate, not just of medical research. This would seem to valorize science as a new dispenser of truth, or perhaps more accurately, to represent as science traditional Christian values such as the sanctity of life, which medical practice has long supported, by ruling out any alternative ways in which this particular experience could be understood and responded to.

To choose to die, or lose the will to live, should be seen as rational or irrational in virtue of what motivates it and its context, not by conformity to a psychiatric diagnostic category [36], yet this is the rigidity which DS delivers (recall the claims listed earlier). The inference that we should intervene with medical treatment, even when people are struggling with symptoms hitherto deemed as appropriate in view of the circumstances, is open to question. Hopelessness and demoralization, more than being just appropriate, are authentic emo- tional cognitions and intervention may amount to a refusal to allow such cognitions to exist through the inability to bear that they do exist. While it is true that patients can be abandoned as a result of physicians’ discomfiture concerning dying, it is likewise true that they are vulnerable to expert medical insistence on the abnormality of their feelings and thoughts about coming to the end of their lives.

How should human beings respond to the suffering of their fellows? It is natural to want to relieve suffering – this is a motivational and ethical cornerstone of medical practice. But the question is whether suffering is always a problem to be solved by specialists in new specialties like palliative care [13]; whether all those who fit the proposed criteria for DS, or those who express a considered desire to die, are best responded to with medical treatment only. Daniel Callahan suggests that society should strive to relieve only that suffering which is not an unavoidable part of life’s other values and aspirations [37]. Accordingly, the medical duty to relieve suffering is important, but limited to the first of two levels of suffering at which we can understand it. At the first level, there are the psychological phenomena of fear, uncertainty and anguish associated with coping with illness and its meaning; secondly, there is the meaning of suffering for the meaning of life itself. According to Callahan, physicians should draw a line at dealing with problems such as the lack of meaning of life or the pointlessness of suffering, because medicine has no competence here. Now Callahan uses the distinction between the two levels of suffering to argue that euthanasia is illegitimate, because he perceives euthanasia as being used to solve the second order of problems, not the first [37]. But the same argument would also rule out DS as an illegitimate diagnosis for medicine, since it is constituted by existential distress, which is suffering of the second type.

Perhaps DS proponents would suggest that they are dealing only with first level of suffering, that is, the manifestations of existential distress. However, as we have seen, they place emphasis on the core experiences of the patient, including meaninglessness and hopelessness.

One of the problems with the defining features of DS is the lack of clarity of terms such as meaning, hopelessness and pointlessness. To feel that there is no hope for a satisfactory future because of one’s condition is not the same thing as feeling generally hopeless about one’s life. To feel that there is no point in continuing one’s life is not the same thing as feeling that one’s life is and has been without point. Despair, understood as abandoning hope for the future because there is no hope that one’s future will be any better than the unacceptable present, is surely sufficient motivation for a rational desire to die.

I suggest that on Callahan’s criteria for legitimate medical involvement, euthanasia arguably emerges the better candidate, in some cases, than the persistent treatment of DS. Euthanasia does not purport to solve the problem of the meaning of life for people who have not resolved that issue, just as treating DS should not. It offers an end to life for people whose meaninglessness, pointlessness and loss of purpose often reside in the unacceptable way their lives are being lived now. Because we appear to be creatures who demand that our lives have overall meaning and a purpose, it is also not surprising that, when we know that life is coming to an end, we feel the loss of these sustaining frames of reference, identity and continuity. Perhaps the best response to this is that of a general ‘being with’ the person; that is to say, whether one is the person’s brother, daughter or doctor, to be with that person as he confronts the existential abyss, may be the response which best combines our personal and professional obligations. On this view, demoralization is never abnormal and dealing with it necessarily involves the pain of accepting that there is an ultimate hopelessness and meaninglessness about living, which is the fact of our dying.

Demoralization syndrome by contrast, in addition to being with the patient, sets out to restore meaning, purpose and worth to those who face death without, apparently, having reached a satisfactory resolution of these things during their lives. If compassionate and non-coercive medical support and management can afford some reduction in fear and anguish, there seems little to object to. But this falls short of requiring the realization of meaning in order to secure a peaceful death, which is suggested by the way DS and its purported connections to the desire to die are described.

How would the DS proposal deal with a patient who refuses to be treated – for example, a patient who competently insists that there is no meaning or justification for his suffering, but that he does not wish to explore this further? If it is true that factors such as early environmental influences on levels of resilience and ideas of self-worth, lifetime losses and tragedies, personality styles and familial relationships are causally involved in the development of this condition and if some patients do, in fact, remain hopeless because of a persistent cognitive style [5], then it follows that medical management in such a case would need to be enforced.

Yet apparently, this is not the case. For example, Kissane concedes that:

When death is premature or marred by severe disfigurement or disability, suffering cannot be fully ameliorated. Here the physician’s task is to sustain support and accompany the dying person on their journey – never abandoning them to their plight. For some a spiritual means of transcendence of suffering may prevail; for the extreme case, pharmacological relief with deep sleep may be needed [38].

Conclusion

We are left with a puzzle. Demoralized, terminally ill patients should all be treated it seems, except in extreme cases, where pharmacological oblivion is acceptable. However, this amounts to accepting the rationality of suicide/assisted death in some cases, but for the moral distinction between pharmacological oblivion and active euthanasia, a distinction which is commonly advanced by opponents of euthanasia. Now, at no point in the proposals for DS do we find reference to cases where a request for the withdrawal of life-sustaining treatment should alert the clinician to the presence of DS. This is a telling omission, for why would such a request not represent the same kind of despair, meaninglessness and distress, as that which motivates requests for active assistance? What else would motivate such a request but an assessment that one’s future is without sustaining hope? The best explanation for the absence of such cases in the accounts of DS is the belief by its proponents that the removal of life-sustaining treatment is morally acceptable, but assisted death is not. In other words, a particular moral view is determining whether or not the scientific phenomenon (i.e. the new diagnosis) is there to be discovered.

We are therefore justified in being skeptical about whether the DS proposal, at least as it is deployed in the setting of terminal and palliative care, is a purely clinical development aimed only at diagnostic and therapeutic progress. We are entitled to argue, as I have done here, that the diagnosis also serves to rule out the possibility of assisted dying, by defining within the sphere of medicine, psychiatry and pathology, all requests to that end.

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