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Demoralisation Syndrome and the end of life

The term ‘demoralisation syndrome’ (DS) has gained currency in the psychiatric and palliative care literature in recent years (1,2). It first came to the attention of SAVES during the 2003 National Palliative Care Conference in a paper ‘The psychological, physical and social correlates of demoralisation in palliative care’, presented by Dr Simon Wein. While this newsletter cannot give a comprehensive discussion of the literature, there are aspects that may be of interest to the readership, especially the possible implications for end-of-life care.

The Oxford English Reference Dictionary defines ‘demoralise’ as ‘to destroy the morale of’, or ‘make hopeless’ (3). Demoralisation syndrome is a new psychiatric condition listed in the Diagnostic and Statistical Manual of Psychiatric Disorders (DSM-1V). Diagnostic criteria for its use are

symptoms of existential distress: meaningless, pointlessness, hopelessness
Sense of pessimism, ‘stuckness’, helplessness, loss of motivation to cope differently
Associated social isolation, alienation and lack of support
Phenomena must persist for more than two weeks (13).

While DS is a separate classification to clinical depression, it is also deemed to be important in the development of a person’s desire to die (4). At the heart of demoralisation are the hallmarks of existential despair (5). These are feelings that have always been understood as being part of the human condition, and understandable responses to grief and loss.

The difference between DS and clinical depression is that depression denies a person the experience of pleasure at the current moment, whereas the ‘demoralised’ person, while able to enjoy certain immediate pleasures, is denied any anticipatory pleasure, as they regard their future as hopeless (6). It has been argued that by DS being diagnosed as a specific psychiatric condition in the terminal phase of a terminal illness there will be the opportunity for patients to be assisted in overcoming these negative emotions.

It has also been argued that it is important to regard DS as an ‘abnormal state’ in its severe form, for to consider it as normal minimises its clinical importance (7). This presupposes that patients who request assistance to die must be suffering from a psychiatric disorder, so it is considered imperative to determine whether or not severely ill patients may respond to psychological treatment, restore meaning in their lives, and reduce feelings that may lead to requests for assistance to die.

To put forward the perspective that demoralisation is a very human and understandable response to impending death is not to suggest that people no longer need psychological treatment or support, or that they simply ‘accept their lot’. Patients and their families are regularly supported, comforted, and indeed palliated by a range of appropriate psycho-social approaches.

Supporters and opponents alike of the right to choose an assisted death generally agree that the diagnosis of clinical depression may influence the ability of a patient to give informed consent, including requests for assistance to die. In fact South Australian legislation proposing a change to the law to allow voluntary euthanasia or physician-assisted suicide in prescribed circumstances includes a series of safeguards. One of these is excluding people with untreated clinical depression. However, as one commentator has argued, accepting 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 … a persistent request for assistance to die would remain an irrational request, implying the existence of DS (8).

The Diagnostic and Statistical Manuals, now used extensively in mental health, evolved out of a need to develop uniformity in psychiatric hospital statistics in the early 1900s. This was followed by more comprehensive information based on a system developed by the American Armed Forces, and subsequently modified by the American Psychiatric Association (Clark et al 1995). The rationale was to facilitate clinical practice and communication, but the history of the DSMs has also been one attracting ongoing debate. For instance it has been argued that the DSM is seen to be pathologising an increasing number of behaviours over time, so that rather than classifying real disorders, it is forever expanding the medicalisation of human problems (11). When considering any new diagnostic category such as DS we must always question the broader influences at play, as ‘social evolution affects medical classification and medical classifications reflect deeply held opinion, values and goals’ (9).There is no reason to suggest that the development of this new diagnosis is motivated by drug companies seeking to promote new forms of pharmacological treatments, as the proposed condition is managed by psychological interventions. It would also be churlish to imply that proponents of this new diagnostic category are not acting out of a true desire to reduce human suffering. However what cannot be overlooked is that

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 (10).

This position has supported the ‘sanctity of life’ doctrine founded upon the Judaeo-Christian religious heritage. What has not been questioned is whether proponents of this new proposed diagnosis are specifically influenced by religious doctrines that are opposed to medical assistance in dying.

When every request for assistance to die can be ‘pathologised’, or considered irrational, what can be ‘defined away’ is an individual’s capacity and therefore right to choose voluntary euthanasia or assisted suicide. This has obvious implications for the rights and personal freedoms that are sought, but still to be realised, by nearly 80% of Australian citizens.

Julia Anaf

1. Kissane, D; Clarke, D; Street, A. (2001) ‘Demoralization syndrome: a relevant psychiatric diagnosis for palliative care’, Journal of Palliative Care: 17: 12-21
2. Clarke, D; Kissane, D; (2002) ‘Demoralization: its phenomenology and importance’ Australian and New Zealand Journal of Psychiatry 36 733-742
3. Pearsall, J; and Trumble, B; (eds) Oxford English Reference Dictionary 2nd Ed.
4. op cit Kissane et al (2002) p 734
5. Parker, M (2004) ‘Medicalizing meaning: demoralization syndrome and the desire to die’, Australian and New Zealand Journal of Psychiatry; 38:765-773
6. Ibid Parker, (2004) p 766
7. op cit Kissane (2002)
8. op cit Parker (2004) p 767
9. ibid Parker (2004) p 768
10. ibid Parker (2004) p 770
11 Kutchins, H & Kirk, S (1987) Making us Crazy, New York: Free Press
12. Clark, L.A., Watson, D. & Reynolds, S. (1995) ‘Diagnosis and Classification of Psychopathology: Challenges to the Current System and Future Directions’. Annual Review of Psychology, 46:121-153.
13. Reported in Australian Doctor, 27the Sept 2002